TDSN New Parent Handbook by Billy Liggett

NEW PARENT

HANDBOOK

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NEW PARENT HANDBOOK

Office Number: (919) 803-0515 24-hour Information Line (919) 788-3646 www.triangledownsyndrome.org facebook.com/TriangleDownSyndromeNetwork twitter.com/triangledsn

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ABOUT TDSN The Triangle Down Syndrome Network is a nonprofit support, resource, and advocacy organization for individuals, families and professionals. Our mission is to support, educate, and connect individuals with Down syndrome, their families and communities in North Carolina. We believe that the community benefits when individuals with Down syndrome are understood, respected, and appreciated. Lives are enriched when they are included in schools, recreation, workplaces, neighborhoods and faith communities. We support individuals with Down syndrome and the communities they live in so that everyone can achieve their full potential. We are funded primarily through donations and small grants and rely on the help of volunteers to carry out activities throughout the year. While we are a grassroots organization, we look forward to continued growth to support new members and build awareness, understanding, and acceptance in our community. TDSN serves more than 600 families in 49 counties throughout North Carolina, with the majority of families living in Wake County.

STAFF Lindsay Tipton (director), Wendy Davidson (technical assistant)

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From the Director Dear Families, Congratulations on the newest addition to your family! Welcoming a new child brings many changes to the family, and when you are welcoming a child with special needs, there are additional worries, concerns, questions and emotions. The Triangle Down Syndrome Network is a support, resource and advocacy organization here to support you through your journey. You may want to read all the information you can get your hands on or just need some time to process. You may want to talk to other parents of children with Down syndrome at different stages in their lives or you may not want to talk at all. Your feelings are ok, no matter what they are. We are here for you when you are ready, in any way that will best support your family. This book was first put together as a binder by a group of parents hoping to offer the support they wished they had at the time their child was born. Over the years it has been bound, updated, and built upon. Parent stories, sibling stories, medical information and basic facts about Down syndrome will provide some information and hopefully answer some questions. Above all, we hope this book will give you the courage and foundation to believe in yourself and your child as you travel down a new, likely unexpected path together. Please feel free to contact the office at any time to request additional information, resources, peer connections or any other form of support you may be looking for. We will do our best to get you the information you need. For additional information on the Triangle Down Syndrome Network, please feel free to visit our website at www.tdsn.org. There you will find additional information and resources as well as details on upcoming events. We hope to meet your family soon. Until then, enjoy getting to know your new baby. Best wishes, Lindsay Tipton Program Director lindsay@triangledownsyndrome.org

NEW PARENT HANDBOOK

Welcome to Holland By Emily Perl Kingsley

am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice Holland has windmills… and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.

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24 - H o u r I n fo r m a t i o n L i n e : ( 919 ) 8 3 5 - 37 3 9

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Congratulations on the birth of your new baby!

f you are reading this now, then you have probably found out that your baby may have Down syndrome. Take a deep breath and relax. We have been where you are and understand the complex feelings of finding out that your child has an extra 21st chromosome. Remember that your baby is a baby first, Down syndrome or not. Now is the time for you to get to know each other. You will have questions, of course, and hopefully will find the answers to many of your questions in this book. You may have preconceived notions about Down syndrome, what your child will be like or accomplish, based on someone you knew who grew up in an earlier generation but try to let that go. Accept no limitations. The higher your expectations, the more likely your child will grow to his or her greatest potential. Because of Early Intervention Programs, children with Down syndrome are able to reach higher potentials than they were just a generation ago. Nothing you did or didn’t do during the pregnancy caused your child’s genetic defect: your child has had 47 chromosomes since conception. Each parent contributes 23 chromosomes to the child. In the case of Down syndrome, there is an extra 21st chromosome which occurs when there is a faulty cell division. And while it is more common that women aged 35 and over will conceive a child with a genetic defect, you will find many, if not most, of the mothers in our group were younger than 35 when their child was born. The Triangle Down Syndrome Network is not “just a support group.” This is an education group and a way to connect with others to form lasting friendships for yourself and for your children. As members, we have found that we learn a tremendous amount from each other — often more than we learn from our own doctors, therapists, and

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other specialists. We have many member families involved with our group, from all walks of life — painters and programmers, doctors and lawyers, clerks and waiters, farmers and pharmacists — and from many different cultural and ethnic backgrounds. We want you to know that we are here for you. There are no fees associated with becoming a member of TDSN or receiving our newsletter by email or USPS. This book is yours to keep as a gift. It was compiled by local families and contains • Health and Developmental Checklists, which you will want to share with your child’s pediatrician • Resource listings of local and national agencies and organizations • Early Intervention programs which will help your child dEvelop his greatest potential • Family Stories from local families of children with Down Syndrome. You may find it comforting to at first just browse through the book, looking at the pictures and perhaps reading some of the family narratives. Later, when you’re ready, take a look at the fact-sheets and share the medical articles and growth charts with your pediatrician. While you may not feel comfortable talking to someone you do not know, we encourage you to make that first contact, either by phone or email or just browsing our website. If your child has specific medical issues, there are members willing to talk about their child’s experience and share their insight. The first weeks after any baby’s birth are stressful and hectic for all families. Be sure to allow yourself time to relax and get to know your precious angel.

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AN INTRODUCTION What is Down Syndrome? •

One in every 691 babies in the the United States is born with Down syndrome, making Down syndrome the most common genetic condition. PAGE 10

From Birth to Adulthood •

With proper support, people with Down syndrome thrive from birth through adulthood and give back far more than they receive. Undoubtedly, people with Down syndrome enhance our world. PAGE 14

Myths & Truths •

Today there are still many misconceptions about Down syndrome and those who have it. This guide dispels some of the common myths about Down syndrome. PAGE 16

FAMILY PERSPECTIVES Supporting, Empowering the Family •

Sadie’s Story •

Some health problems are more common among people with Down syndrome than among the general population. However, given knowledgeable and well-resourced medical care, most of these can be successfully treated or managed. PAGE 18

•

Down syndrome was first described by Dr. John Langdon Down in 1866, though the term wasn’t commonly used until nearly 100 years later. Scientists learned of the cause in 1959. PAGE 20

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Local parents share their personal experiences, from learning of their child’s diagnosis and the journey that followed. Matthew, Seth, Ryan, Wesley, Caroline Grace, Gabriel, Alyssa, Laney, Jamie, Brett, Eleanor, Maggie, Benjamin, Gabriel II, Abigail, William, George and Matthew II. PAGE 36

Family Perspectives | Siblings •

Trisomy 21 | History of Down syndrome •

“I am not proud of all the things I thought in those first few hours or days after receiving the diagnosis but I am also not ashamed. It is OK to think and feel whatever you are feeling.” PAGE 32

Family Perspectives | Parents

Health & Medical Issues •

There are a number of vital factors within each family which will influence its ultimate wellbeing. One is the emotional and physical health of each parent individually. PAGE 26

Brothers and sisters of children with Down syndrome write about what they’ve learned from their sibling and hwo they became better people. Mary Evelyn. Laney, Markus and Matt. PAGE 53

Family Perspectives | Grandparents •

Grandparents write about being their for their children and sharing in their experience of having a child with Down syndrome. Josi, Emily, George, Caroline Grace and Steven. PAGE 57

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HEALTH & FINANCES Milk to Table Foods •

For children with Down syndrome, learning to coordinate tongue and mouth movements from the first bites of baby cereal to eating table foods takes longer and can cause parents concern. PAGE 62

ADVICE & RESOURCES The Unplanned Journey •

Feeding & Swallowing •

Children with Down syndrome often have significant impairments in oral motor function which place them at risk for feeding and swallowing disorders (dysphagia) and nutritional compromise. PAGE 68

Social, Communication Issues •

•

Your Are Not Alone •

One of the most frequently asked questions by parents of children with Down syndrome is how their child is doing compared to other children with Down syndrome? PAGE 74

The Ears & Heart

Caring for the ears and hearing of children with Down syndrome is among the most challenging aspects of parenthood, according to doctors.And approximately half of all infants born with Down syndrome have a heart defect. PAGE 82

The birth of a child with a disability, or the discovery that a child has a disability, can have profound effects on the family. In “You are Not Alone,” Patricia McGill Smith offers the insights that she and others have gained through their own experience of having a child with a disability. In this article, we will provide additional information to support the life cycle, health, and well-being of the family when a member has a disability. PAGE 112

If you have recently learned that your child has a developmental delay or a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it. PAGE 116

Triangle area groups, resources •

A detailed listing of organizations and groups in the Triangle and other parts of North Carolina that can help you and your family. PAGE 122

Physical, Occupational Therapy •

Early physical therapy makes a decisive difference in the long-term functional outcome of the child with Down syndrome. PAGE 84

Estate Planning •

By going through the important steps of special needs planning, you have a chance to avoid potential pitfalls that families with special needs often encounter. PAGE 92

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NEW PARENT HANDBOOK

AN INTRODUCTION

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ou probably have many questions, concerns and fears right now. That’s okay. The most important thing to keep in mind is that a Down syndrome diagnosis is not as “life changing“ as the fact that you have a new baby. And in most ways, your baby will be just like other infants. Every baby needs to be fed, held and most of all, loved. There will be challenges in raising your child, but there will also be many joys. It’s normal to be nervous about what lies ahead, but remember that Down syndrome is a condition your baby has, it is not who your baby is. Now is the time to begin learning all you can about Down syndrome and this section is a great place to start. WWW.TDSN.ORG

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What is Down syndrome?

n every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm — although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

One in every 691 babies in the the United States is born with Down syndrome, making Down syndrome the most common genetic condition. Approximately 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the United States each year. For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn’t until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down the recognition as the “father” of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity. In recent history, advances in medicine and science have enabled researchers to investigate the characteristics

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of people with Down syndrome. In 1959, the French physician Jérôme Lejeune identified Down syndrome as a chromosomal condition. Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down syndrome. It was later determined that an extra partial or whole copy of chromosome 21 results in the characteristics associated with Down syndrome. In 2000, an international team of scientists successfully identified and catalogued each of the approximately 329 genes on chromosome 21. This accomplishment opened the door to great advances in Down syndrome research. TYPES OF DOWN SYNDROME There are three types of Down syndrome: trisomy 21 (nondisjunction), translocation and mosaicism. TRISOMY 21 (nondisjunction): Down syndrome is usually caused by an error in cell division called “nondisjunction.” Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95 percent of cases, is called trisomy 21. MOSAICISM: Mosaicism occurs when nondisjunction of chromosome 21 takes place in one - but not all - of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism accounts for about 1 percent of all cases of Down syndrome. Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess. TRANSLOCATION: Translocation accounts for about 4% of all cases of Down syndrome. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an WWW.TDSN.ORG

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extra part of chromosome 21 causes the characteristics of Down syndrome. WHAT CAUSES DOWN SYNDROME? Regardless of the type of Down syndrome a person may have, all people with Down syndrome have an extra, critical portion of chromosome 21 present in all or some of their cells. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. The cause of nondisjunction is currently unknown, but research has shown that it increases in frequency as a woman ages. However, due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age. There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents’ activities before or during pregnancy. The additional partial or full copy of the 21st chromosome which causes Down syndrome can originate from either the father or the mother. Approximately 5% of the cases have been traced to the father.

LIKELIHOOD Down syndrome occurs in people of all races and economic levels, though older women have an increased chance of having a child with Down syndrome. A 35-year-old woman has about a one-in-350 chance of conceiving a child with Down syndrome, and this chance increases gradually to 1 in 100 by age 40. At age 45, the incidence becomes approximately 1 in 30. The age of the mother does not seem to be linked to the risk of translocation. Since many couples are postponing parenting until later in life, the incidence of Down syndrome conceptions is expected to increase. Therefore, genetic counseling for parents is becoming increasingly important. Still, many physicians are not fully informed about advising their patients about the incidences of Down syndrome, advancements in diagnosis, and the protocols for care and treatment of babies born with Down syndrome. All 3 types of Down syndrome are genetic conditions (relating to the genes), but only 1 percent of all cases of Down syndrome have a hereditary component (passed from parent to child through the genes). Heredity is not a factor in trisomy 21 (nondisjunction) and mosaicism. However, in one third of cases of Down syndrome resulting from translocation there is a hereditary component — accounting for about 1 percent of all cases of Down syndrome. The age of the mother does not seem to be linked to the risk of translocation. Most cases are sporadic — chance — events. However, in about one third of cases, one parent is a carrier of a translocated chromosome. Once a woman has given birth to a baby with trisomy 21 (nondisjunction) or translocation, it is estimated that her chances of having another baby with trisomy 21 is 1 in 100 up until age 40. The risk of recurrence of translocation is about 3% if the father is the carrier and 10-15% if the mother is the carrier. Genetic counseling can determine the origin of translocation. DIAGNOSIS PRENATALLY: There are two categories of tests for Down syndrome that can be performed before a baby is born: screening tests and diagnostic tests. Prenatal screens estimate the chance of the fetus having Down syndrome. Most of these tests only provide a probability. Diagnostic

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tests can provide a definitive diagnosis with almost 100 percent accuracy. Most screening tests involve a blood test and an ultrasound (sonogram). The blood tests (or serum screening tests) measure quantities of various substances in the blood of the mother. Together with a woman’s age, these are used to estimate her chance of having a child with Down syndrome. These blood tests are often performed in conjunction with a detailed sonogram to check for “markers” (characteristics that some researchers feel may have a significant association with Down syndrome). New advanced prenatal screens are now able to detect chromosomal material from the fetus that is circulating in the maternal blood. These tests are not invasive (like the diagnostic tests below), but they provide a high accuracy rate. Still, all of these screens will not definitively diagnose Down syndrome. Prenatal screening and diagnostic tests are now routinely offered to women of all ages. The diagnostic procedures available for prenatal diagnosis of Down syndrome are chorionic villus sampling (CVS) and amniocentesis. These procedures, which carry up to a 1% risk of causing a spontaneous termination (miscarriage), are practically 100% accurate in diagnosing Down syndrome. Amniocentesis is usually performed in the second trimester after 15 weeks of gestation, CVS in the first trimester between 9 and 11 weeks. AT BIRTH: Down syndrome is usually identified at birth by the presence of certain physical traits: low muscle tone, a single deep crease across the palm of the hand, WWW.TDSN.ORG

a slightly flattened facial profile and an upward slant to the eyes. Because these features may be present in babies without Down syndrome, a chromosomal analysis called a karyotype is done to confirm the diagnosis. To obtain a karyotype, doctors draw a blood sample to examine the baby’s cells. They use special tools to photograph the chromosomes and then group them by size, number, and shape. By examining the karyotype, doctors can diagnose Down syndrome. Another genetic test called FISH can apply similar principles and confirm a diagnosis in a shorter amount of time. IMPACT ON SOCIETY Individuals with Down syndrome are becoming increasingly integrated into society and community organizations, such as school, health care systems, work forces, and social and recreational activities. Individuals with Down syndrome possess varying degrees of cognitive delays, from very mild to severe. Most people with Down syndrome have cognitive delays that are mild to moderate. Due to advances in medical technology, individuals with Down syndrome are living longer than ever before. In 1910, children with Down syndrome were expected to survive to age 9. With the discovery of antibiotics, the average survival age increased to 19 or 20. Now, with recent advancements in clinical treatment, most particularly corrective heart surgeries, as many as 80 percent of adults with Down syndrome reach age 60, and many live even longer. More and more Americans are interacting with individuals with Down syndrome, increasing the need for widespread public education and acceptance. NEW PARENT HANDBOOK

From birth to adulthood With proper support, people with Down syndrome thrive from birth through adulthood and give back far more than they receive. Undoubtedly, people with Down syndrome enhance our world. HEALTH While there is no “cure” for Down syndrome, experts in pediatric medicine consider it a treatable condition. Indeed, the single most dramatic change effected by our community has been the astounding improvement of the health of people with Down syndrome. Through the caring innovation of medical professionals, the typical lifespan of an individual with Down syndrome now approaches the average for all people. Equally important, advancements in cardiology, nutrition, the behavioral sciences and so much more have opened a 14

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high quality of life for most if not all people with Down syndrome. GENETIC COUNSELING To locate a genetic counselor near you, visit the National Society of Genetic Counselors Web site at www. nsgc.org. • Genetic counseling may be helpful once your child is born or if you have a prenatal diagnosis. • The chance of having a child with Down syndrome increases with the mother’s age. • For those who have a baby with trisomy 21, the chance of recurrence in future pregnancies is approximately one percent. However, for those whohave a child with translocation Down syndrome and a parent carrier, thechance increases significantly. • After the birth of a child with Down syndrome, many genetic counselors, physicians and parents suggest WWW.TDSN.ORG

amniocentesis or Chorionic Villus Sampling (CVS) in future pregnancies so that parents can prepare for their new baby’s arrival. Though generally reliable, amniocentesis and CVS results are not 100 percent accurate and these tests slightly increase the chance of miscarriage. • The NDSC offers a free publication entitled Light at the End of the Tunnel for those who have received a prenatal diagnosis. CHROMOSOME VARIATION • Ninety-five percent of people with Down syndrome have an extra 21st chromosome in every cell of their body. This is known as trisomy 21. • Four percent have an additional 21st chromosome attached to another chromosome. • This is called translocation Down syndrome. In this case, a parent may be a carrier of a balanced translocation. • About one percent of people with Down syndrome have an extra 21st chromosome in some cells, but not in others. This is called mosaic Down syndrome. DEVELOPMENTAL ASPECTS Children with Down syndrome are more like other children than they are different. During the first few months of life, a child with Down syndrome behaves like most other infants and generally needs the same care, attention and love. • Children with Down syndrome usually are smaller than other children. • Language, motor and intellectual development are generally delayed in children with Down syndrome. • Most people with Down syndrome experience some degree of cognitive delay, though there is a wide spectrum of mental abilities, developmental progress and behavior in children with Down syndrome. Research shows that the development of a child with Down syndrome is positively influenced by a caring and enriching home environment, early intervention and improved educational efforts. In many cases, full inclusion in an educational and social community serves the needs of a child with Down syndrome in the most positive way. EARLY INTERVENTION AND PRESCHOOL Early intervention is provided to children with disabilities and their parents to facilitate learning WWW.TDSN.ORG

Physical attributes of infants with Down syndrome. Graphic from the Lucinda Foundation.

development. These services should begin soon after birth. Just as early intervention programs foster the development of a child with Down syndrome, preschools, both private and public, play an important role in a young child’s life. Exploring the environment beyond the home enables the child to successfully participate in a broader world and continue to grow in self-awareness. In addition to a fundamental education, continued school experiences assist the child in feeling a personal identity, self-respect and self-confidence. Inclusion in regular classrooms provides an opportunity for children to engage in sharing relationships with others and develop academic skills. ELEMENTARY AND MIDDLE SCHOOL YEARS Because of the federal Individuals with Disabilities Education Act (IDEA), every child with Down syndrome, as any other child with differences, is guaranteed the right to a free, appropriate education in the least restrictive environment. All public school systems must comply with the law. Least restrictive environment is most often your NEW PARENT HANDBOOK

neighborhood schoolâ&#x20AC;&#x2122;s general education classroom. HIGH SCHOOL As is true for all high school students, teens with Down syndrome enjoy many aspects of the high school experience. These often include assisting in student government and athletics, participating in theater productions and attending campus clubs, sporting events, dances and special events â&#x20AC;&#x201D; like prom. Many high school students with Down syndrome graduate with full diplomas. POST SECONDARY EDUCATION A variety of college experiences ranging from junior colleges to settings where students live on campus are now available to people with Down syndrome. The length of time educational services are provided for students with special needs varies by state. These services occur within schools or as part of a transition program. WORK Work opportunities for individuals with Down syndrome range from supported employment to independent employment. In many states, services help support people with Down syndrome as they enter the work world. A supported employment service provider assists people with Down syndrome as they get to know their job. People with Down syndrome have proven to be excellent employees and assets in their places of work. Increasingly, employers find that directly hiring people with Down syndrome, without additional support, is also beneficial. ADULT LIFE People with Down syndrome enjoy living settings as varied as the rest of the world. People with Down syndrome live alone or with a spouse, with a roommate or family members, in creatively supported settings or in more traditional supported settings. People with Down syndrome enjoy living in communities with transportation, entertainment, shopping and dining options and places of worship. People with Down syndrome vote, pay taxes and volunteer in places such as fire departments, offices, hospitals, schools and churches. People with Down syndrome are accomplished writers, musicians, photographers and poets. When people with Down syndrome are given greater opportunities, their achievements grow correspondingly.

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Myths & Truths Today there are still many misconceptions about Down syndrome and those who have it. This guide dispels some of the common myths about Down syndrome. MYTH: Down syndrome is a rare genetic disorder. TRUTH: Down syndrome is the most commonly occurring genetic condition. One in every 691 babies in the United States is born with Down syndrome, approximately 6,000 births per year. Today, there are more than 400,000 people living with Down syndrome living in the United States. MYTH: People with Down syndrome have severe cognitive delays. TRUTH: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome. MYTH: Most people with Down syndrome are institutionalized. TRUTH: Today people with Down

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be placed in segregated special education programs. TRUTH: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees. MYTH: Adults with Down syndrome are unemployable.

syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways. MYTH: Parents will not find community support in bringing up their child with Down syndrome. TRUTH: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. Visit www.ndss. org to find a Down syndrome group in your area. MYTH: Children with Down syndrome must

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TRUTH: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few. MYTH: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage. TRUTH: People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry. MYTH: People with Down syndrome are always happy. TRUTH: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior. For more information on Down syndrome and NDSS, visit www.ndss.org or call 800-221-4602

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Health & medical issues Some health problems are more common among people with Down syndrome than among the general population. However, given knowledgeable and well-resourced medical care, most of these can be successfully treated or managed.

irtually all of the health issues that occur in people with Down syndrome also occur throughout the wider population. Therefore, general advances in medical care for all children and adults have also benefited those with Down syndrome. General medical advances and equal access to them are the main reasons for the increased life expectancy observed for people with Down syndrome in developed countries. Supporting these improvements are evidence-based, preventive medical care guidelines. There are specialist medical interest groups established in the UK and Ireland and in the USA that provide evidence-based healthcare 18

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guidelines. In the US, medical care guidelines are also issued by the Committee on Genetics of the American Academy of Pediatrics. INFECTIONS Respiratory infections are more common among people with Down syndrome, especially during the first five years of life. Infections of the skin and the bladder also tend to be common. There is evidence that people with Down syndrome have this increased susceptibility to infection because their immune systems have some abnormalities, though the mechanisms involved remain unclear. HEART DEFECTS Heart defects occur in around 47 percent of individuals with Down syndrome and 10 to 15 percent of babies with Down syndrome have a severe heart defect that requires surgical intervention during the first few months of life. The ability to repair major heart defects has had a major impact on infant survival for children with Down syndrome in WWW.TDSN.ORG

countries with appropriate facilities and expertise. Almost all babies with Down syndrome who have a severe heart defect would die by school age without modern cardiac surgery. With early surgical intervention, 80-90 percent of these infants survive beyond 5 years of age. LEUKEMIA Children with Down syndrome have a 10 to 20 fold increased risk of developing leukaemia. The cumulative risk for leukaemia by the age of 5 years is around 2 percent. Many children with Down syndrome and acute leukaemia can be successfully treated with appropriate treatment. THYROID Thyroid disorders are more prevalent among individuals with Down syndrome. The exact extent and mechanisms of thyroid abnormalities, effective screening regimes and treatment approaches remain an area of active research and debate. Once diagnosed, hypothyroidism can be simply and effectively treated, though this treatment and further monitoring is required throughout the individual’s life. HEARING Up to 80% of children with Down syndrome experience hearing loss, sometimes severe. Even mild hearing loss will lead to difficulties in speech and language development. A number of factors have been identified as contributing to hearing loss among people with Down syndrome, including increased incidence of chronic ear diseases, partly due to anatomical differences and also exacerbated by weaker immune systems. Common problems include wax in the external ear canal, conductive loss due to ‘glue’ in the middle ear, middle ear infections and sensori-neural hearing loss. Hearing is vital for mental development and learning, especially for the development of speech and language and social skills. Although a mild hearing loss is not usually considered serious in other children, it may have a significant effect on learning for children with Down syndrome. While ‘glue ear’ may only lead to mild or moderate hearing losses (30dB to 60dB) this will make hearing and discriminating words much more difficult for children learning new words (for example, “cat”, “hat”, “mat” and “sat” may all sound like “a”). Hearing loss will also interfere with the accurate perception and subsequent production of speech sounds. In other words, hearing loss will delay vocabulary acquisition and compromise clear speech. A variety of interventions are now available to treat or ameliorate the effects of hearing loss. Where children

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• Some health problems are more common among people with Down syndrome than among the general population • Given knowledgeable and well-resourced medical care, most of these can be successfully treated or managed

are having difficulty earning to talk because of hearing loss, signing may also help. However, there are potential complications associated with some treatments and longitudinal studies examining long-term developmental outcomes are required to investigate overall benefits. VISION People with Down syndrome are more likely to experience vision disorders such as short sightedness, long sightedness and astigmatism. They are also more likely to have squints and to experience delays in developing effective focusing, depth perception and sharpness of vision. Many of these problems can be corrected to give good vision with the use of spectacles. SLEEP PROBLEMS Studies have reported a high incidence of sleep disturbance among children and adolescents with Down syndrome. Poor sleep can lead to behaviour problems and impair learning. Unfortunately, we do not understand enough about diagnosing or treating sleep problems in children with Down syndrome. DEMENTIA Although physiological indications associated with Alzheimer disease are present at death in almost all people with Down syndrome over the age of 30, the observed prevalence of dementia of the Alzheimer type varies widely. Recent population-based studies of adults with Down syndrome have observed Alzheimer-type dementia in approximately 10 percent of those aged 40 to 49 years and 26 percent of those aged 50 and over. OTHER PSYCHIATRIC DISORDERS Although most people with Down syndrome do not have psychiatric or neurobehavioral disorders, there is an increased prevalence of behavioural, autism-spectrum and attention deficit disorders among young people with Down syndrome. One study has suggested that the incidence of autism spectrum disorders among children with Down syndrome may be as high as 7 percent compared with less than 1 percent in the general population. NEW PARENT HANDBOOK

Trisomy 21 | History of Down syndrome Down syndrome was first described by Dr. John Langdon Down in 1866, though the term wasn’t commonly used until nearly 100 years later. Scientists learned of the cause — a triplication in the 21st chromosome — in 1959 By Len Leshin, MD, FAAP Copyright 1997, 2000, 2003. All rights reserved.

he formal story began in 1866, when a physician named John Langdon Down published an essay in England in which he described a set of children with common features who were distinct from other children with mental retardation. Down was superintendent of an asylum for children with mental retardation in Surrey, England when he made the first distinction between children who were cretins (later to be found to have hypothyroidism) and what he referred to as “Mongoloids.” Down based this unfortunate name on his notion that these children looked like people from Mongolia, who were thought then to have an arrested development. This ethnic insult came under fire in the early 1960s from Asian genetic researchers, and the term was dropped from scientific use. Instead, the condition became called “Down’s syndrome.” In the 1970s, an American revision of scientific terms changed it simply to “Down syndrome,” while it still is called “Down’s” in the UK and some places in Europe. In the first part of the 20th century, there was much speculation of the cause of Down syndrome. The first people to speculate that it might be due to chromosomal abnormalities were Waardenburg and Bleyer in the 1930s. But it wasn’t until 1959 that Jerome Lejeune and Patricia Jacobs, working independently, first determined the cause to be trisomy (triplication) of the 21st chromosome. Cases of Down syndrome due to translocation and mosaicism were described over the next three years. THE CHROMOSOMES Chromosomes are thread-like structures composed of DNA and other proteins. They are present in every cell 20

TRIANGLE DOWN SYNDROME NETWORK

Down syndrome was first described by Dr. John Langdon Down in 1866. He was a physician in England with a special interest in mental disabilities. While he was the first to describe some of the distinctive characteristics of people with Down syndrome, it wasn’t until 1959 that the cause of Down syndrome, an extra chromosome 21, was discovered by Dr. Jerome Lejeune who was studying chromosomes (a speciality called cytogenetics).

of the body and carry the genetic information needed for that cell to develop. Genes, which are units of information, are “encoded” in the DNA. Human cells normally have 46 chromosomes which can be arranged in 23 pairs. Of these 23, 22 are alike in males and females; these are called the “autosomes.” The 23rd pair are the WWW.TDSN.ORG

People normally have 23 pairs of chromosomes in each cell. Each chromosome is made of a coil of DNA which contains our genes. These give instructions to our body to tell it how to work. Down syndrome occurs when a person has an extra copy of chromosome 21 (red arrow). Having this extra genetic information is what causes the physical and mental characteristics of people who have Down syndrome.

sex chromosomes (‘X’ and ‘Y’). Each member of a pair of chromosomes carries the same information, in that the same genes are in the same spots on the chromosome. However, variations of that gene (“alleles”) may be present. (Example: the genetic information for eye color is a “gene;” the variations for blue, green, etc. are the “alleles.”) Human cells divide in two ways. The first is ordinary cell division (“mitosis”), by which the body grows. In this method, one cell becomes two cells which have the exact same number and type of chromosomes as the parent cell. The second method of cell division occurs in the ovaries and testicles (“meiosis”) and consists of one cell splitting into two, with the resulting cells having half the number of chromosomes of the parent cell. So, normal eggs and sperm cells only have 23 chromosomes instead of 46. Many errors can occur during cell division. In meiosis, the pairs of chromosomes are supposed to split up and go WWW.TDSN.ORG

to different spots in the dividing cell; this event is called “disjunction.” However, occasionally one pair doesn’t divide, and the whole pair goes to one spot. This means that in the resulting cells, one will have 24 chromosomes and the other will have 22 chromosomes. This accident is called “nondisjunction.” If a sperm or egg with an abnormal number of chromosomes merges with a normal mate, the resulting fertilized egg will have an abnormal number of chromosomes. In Down syndrome, 95 percent of all cases are caused by this event: one cell has two 21st chromosomes instead of one, so the resulting fertilized egg has three 21st chromosomes. Hence the scientific name, trisomy 21. Recent research has shown that in these cases, approximately 90 percent of the abnormal cells are the eggs. The cause of the nondisjunction error isn’t known, but there is definitely connection with maternal age. Research is currently aimed at trying to determine the cause and timing of the nondisjunction event.

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Facts • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. •Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome. • There are more than 400,000 people living with Down syndrome in the United States. Down syndrome occurs in people of all races and economic levels. • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age. • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. •A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all. • Life expectancy for people with Down syndrome has increased dramatically in recent decades — from 25 in 1983 to 60 today. •People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways. •All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. 22

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Three to four percent of all cases of trisomy 21 are due to Robertsonian Translocation. In this case, two breaks occur in separate chromosomes, usually the 14th and 21st chromosomes. There is rearrangement of the genetic material so that some of the 14th chromosome is replaced by extra 21st chromosome. So while the number of chromosomes remain normal, there is a triplication of the 21st chromosome material. Some of these children may only have triplication of part of the 21st chromosome instead of the whole chromosome, which is called a partial trisomy 21. Translocations resulting in trisomy 21 may be inherited, so it’s important to check the chromosomes of the parents in these cases to see if either may be a “carrier.” The remainder of cases of trisomy 21 are due to mosaicism. These people have a mixture of cell lines, some of which have a normal set of chromosomes and others which have trisomy 21. In cellular mosaicism, the mixture is seen in different cells of the same type. In tissue mosaicism, one set of cells, such as all blood cells, may have normal chromosomes, and another type, such as all skin cells, may have trisomy 21. THE 21ST CHROMOSOME AND DOWN SYNDROME The chromosomes are holders of the genes, those bits of DNA that direct the production of a wide array of materials the body needs. This direction by the gene is called the gene’s “expression.” In trisomy 21, the presence of an extra set of genes leads to overexpression of the involved genes, leading to increased production of certain products. For most genes, their overexpression has little effect due to the body’s regulating mechanisms of genes and their products. But the genes that cause Down syndrome appear to be exceptions. Which genes are involved? That’s been the question researchers have asked ever since the third 21st chromosome was found. From years of research, one popular theory stated that only a small portion of the 21st chromosome actually needed to be triplicated to get the effects seen in Down syndrome; this was called the Down Syndrome Critical Region. However, this region is not one small isolated spot, but most likely several areas that are not necessarily side by side. The 21st chromosome may actually hold 200 to 250 genes (being the smallest chromosome in the body in terms of total number of genes); but it’s estimated that only a small percentage of those may eventually be involved in producing the features of Down syndrome. Right now, the question of WWW.TDSN.ORG

This recent advertisement for World Down Syndrome Day from Down Syndrome International uses socks to represent the extra set of genes (the genes that represent Down Syndrome) in the 21st chromosome. Down Syndrome International encouraged the world to wear brightly colored “Lots of Socks” logo socks on World Down Syndrome Day to raise awareness. Learn more about their effort at www.worlddownsyndromeday.org

which genes do what is highly speculative. However, there are some suspects. One of the more notable aspects of Down syndrome is the wide variety of features and characteristics of people with trisomy 21: There is a wide range of mental retardation and developmental delay noted among children with Down syndrome. Some babies are born with heart defects and others aren’t. Some children have associated illnesses such as epilepsy, hypothyroidism or celiac disease, and others don’t. The first possible reason is the difference in the genes that are triplicated. As I mentioned above, genes can come in different alternate forms, called “alleles.” The effect of overexpression of genes may depend on which allele is present in the person with trisomy 21. The second reason that might be involved is called “penetrance.” If one allele causes a condition to be present in some people but not others, that is called “variable penetrance,” and that appears to be what happens with trisomy 21: the alleles don’t do the same thing to every person who has it. Both reasons may be why there is such variation in children and adults with Down syndrome. WWW.TDSN.ORG

TOWARD THE NEXT CENTURY Researchers are busy in their attempts to map out the full structure of the chromosome, including the Human Genome Database. Because of the small size of the 21st chromosome and its association with Down syndrome, it is the second-most heavily mapped human chromosome. Research is focusing on trying to identify genes and their effects when overexpressed. However, it would be a mistake to assume that the clinical features of Down syndrome are only due to a handful of genes being overexpressed. You can think of the overexpressed gene products interacting with a number of normal gene products, each product individualized by the person’s unique genetic makeup, and thus being thrown “out of genetic balance.” This would then make the person more susceptible to other genetic and environmental insults, leading to the features, diseases and conditions associated with Down syndrome. It is this complex arrangement that scientists will be addressing in the second century of Down syndrome research.

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FAMILY PERSPECTIVES

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he birth of every child will fundamentally change the day to day lives of a family. A birth of a child with Down syndrome is not different, and it brings along with it added anxieties, worries, joys, appreciation and profound love for a child with a disability. Parents who have traveled this road before have found comfort in the success stories of other families who have overcome their challenges and found a rainbow on their road through life. In this section, we are providing you a perspective from several viewpoints, the Down syndrome young adults themselves, the parents, the grandparents and then from siblings. Although we havenâ&#x20AC;&#x2122;t included the specific contact information for each author, each author is very willing to talk to you in person about their experiences. If a particular story touches you, contact our support line at (919) 788-3646 and ask that the author of a particular story contact you. WWW.TDSN.ORG

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Supporting and empowering the family Reprinted with permission from: NICHCY News Digest Second Edition #ND20, February 1997

here are a number of vital factors within each family which will influence its ultimate wellbeing. One is the emotional and physical health of each parent individually. Because it is generally the parents who confront the issues associated with their child’s disability (e.g., dealing with medical practitioners, caring for the child), while simultaneously trying to maintain the household (e.g., holding down jobs, shopping, cooking, cleaning up, taking care of other children), it is not surprising that many parents of children with disabilities report times of feeling overwhelmed. It is, thus, very important for you, as parents, to take some time to care for yourselves as individuals: getting enough sleep, eating regular meals, trying to exercise every day, even if it is just taking a short walk. As one mother relates: 26

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“I would sometimes retreat to my “tower” and pretend that I had no responsibilities other than to amuse myself with a good book or a soothing tape. The respite usually didn’t last more than a half hour, and it was never enough, but it helped me break the “martyr” pattern of thinking I was required to live and breathe only for my children. In those brief moments of quiet reflection I could renew my sense of self and remember that I was important, too; that I was Kate, a person, with lots of abilities and interests that did not all coincide with my role as Mommy. I came to realize that a little selfishness is not a bad thing. If I could enjoy myself more, I could enjoy my children more.” This sentiment is echoed throughout most of the literature written by parents. As Rhonda Krahl remarks, “What your child needs most is a healthy, loving parent. You can give him that by taking care of yourself.” Many families will be single-parent families, but for WWW.TDSN.ORG

those who are not, the relationshipbetween the parents is a factor that can influence the family’s well-being. When the parents’ relationship is a strong and supportive one, it enriches family life for all members.Conversely, when there are problems in the relationship, the tension affects the rest of the family as well. This is stating what most of us already know, as is saying that marriages undergo change with the birth of a child — any child. But when a child in the family has special needs, “the changes (in the marriage relationship) will be greater and more demanding.” For a number of reasons, parenting a special needs child can create stress and conflict between the parents. For one, fathers and mothers may react differently to the fact of the disability. Mothers typically respond more emotionally than fathers, who are apt to focus more on the future and the long-term concerns of the child. At times, one parent may be actively experiencing grief and may feel alone if the other parent is unable to express his or her grief and sorrow. At other times, decisions must be made about the child’s care, and parents may not agree. And when all is said and done, the sheer demands of parenting can leave each partner exhausted and drained. “With all the time you must spend with and for your child, it’s easy to forget to take time for your mate... You can easily lose track of what your mate is thinking, feeling or doing as you concentrate on keeping up with family routines.” Much of the literature written by parents discusses ways for parents to protect their relationship. One point emerges again and again, and that is the importance of making time for each other: meeting for lunch, getting away for a few hours together, sharing an activity. “This isn’t neglecting your responsibilities. If the relationship crumbles you will face even more duties. Taking time to preserve your relationship makes good, practical sense, even if something else has to suffer temporarily” (Krahl, 1989, p. 14). Talking to each other and really listening are also important — and conversations do not always have to revolve around the children in the family. Finding other topics to discuss can do much to revitalize parents and preserve intimacy between them. It is also important to recognize that there are times when one partner needs to have space. As Peggy Finston puts it, “We need to accept how our mate distracts himself or herself.” Sharing the duties of providing care is also necessary, although couples report that they often have to work hard at communicating in order to achieve the “we-ness” that goes behind WWW.TDSN.ORG

teamwork. Many parents have found it is necessary and helpful to seek joint counseling. Through this process, they grew to understand each other’s needs and concerns more fully and found ways of discussing and resolving their differences.

Brothers and Sisters: The Sibling Story We know from the experiences of families and the findings of research that having a child with a disability powerfully affects everyone in the family. This includes that child’s brothers and sisters. Many authors and researchers have written with eloquence about how the presence of a disability affects each sibling individually, as well as the relationships between the siblings. Some books dealing with sibling issues are listed in the resources section of this document. The impact, according to the siblings themselves, varies considerably from person to person. Yet there are common threads that run through their stories. For many, the experience is a positive, enriching one that teaches them to accept other people as they are. Some become deeply involved in helping parents care for the child with a disability, often assuming responsibilities beyond their years in terms of that individual’s care and the maintenance of the household. It is not uncommon for siblings to become ardent protectors and supporters of their brother or sister with special needs or to experience feelings of great joy in watching him or her achieve even the smallest gain in learning or development. Increased maturity, responsibility, altruism, tolerance, humanitarian concerns and careers, a sense of closeness in the family, self-confidence, and independence are among the other positive effects noted in siblings. In contrast, many other siblings experience feelings of bitterness and resentment towards their parents or the brother or sister with a disability. They may feel jealous, neglected, or rejected as they watch most of their parents’ energy, attention, money, and psychological support flow to the child with special needs. The reaction and adjustment of siblings to a brother or sister with a disability may also vary depending upon their ages and developmental levels. The younger the nondisabled sibling is, the more difficult it may be for him or her to understand the situation and to interpret events realistically. Younger children may be confused about the nature of the disability, including what caused it. They may feel that they themselves are to blame or NEW PARENT HANDBOOK

may worry about “catching” the disability. As siblings mature, their understanding of the disability matures as well, but new concerns may emerge. They may worry about the future of their brother or sister, about how their peers will react to their sibling, or about whether or not they themselves can pass the disability along to their own children. Clearly, it is important for you to take time to talk openly about your child’s disability with your other children, explaining it as best you can in terms that are appropriate to each child’s developmental level. As Charles Callahan remarks, “Information, even concerning a painful subject, is preferable to ignorance distorted by imagination.” Some of the books listed in the resources section under “Siblings” can help you open up the lines of communication and address the needs of your nondisabled children. As services for families grow, you may also find there is a support group available to your children, which can provide a forum for siblings to share their feelings with others in a similar situation and to exchange factual information about disability and illness.

The Child with Special Needs Much of how you raise your child with a disability will depend on your family’s personal beliefs about childrearing, your child’s age, and the nature of his or her disability. An important point to remember is that most of the regular child-raising issues will apply — children with disabilities will go through the usual childhood stages. They may not go through stages at the same age, at the same rate, or use the same words as children without disabilities, but they are children and kids are kids. We, as parents, may believe that all children should be treated the same, but in practice that is usually not the case. Why? Because anyone who has been around children, even infants, knows they have different personalities and react differently to similar situations. We encourage and coax the shy child and set limits for the rambunctious one. We tell the loud ones to be quiet and the quiet ones to speak up. We offer different activities to the child who loves to paint than to the one who wants to play ball. Children just are not the same — but they should have the same opportunities. Among their opportunities should be the chance to assume increasingly greater degrees of responsibility and independence. There may be many ways in which your child can help himself or herself or other members of 28

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the family, including doing chores around the house. You will need to consider what these activities might be, given your son or daughter’s disabilities and capabilities. As you expect and encourage your child to assume responsibility, his or her sense of pride and competence will also increase. As Ivonne Mosquera remarks: “Even though I’m blind, even though it may take me a bit longer to do certain things, I can still do them... Once you accomplish a goal, you’ll be the person who feels good about it. Whether or not other people congratulate you for it, you’ll feel better, and you’ll know that you did it because of you — because you never gave up.” Conversely, to not expect or encourage your child to contribute to self-care or household matters may send the message that he or she is not capable of helping. Dependence is fostered instead, as Teresa discovered with her daughter Betsy. “First, they were little things like turning on the bathwater. Then she wanted me to carry her instead of using crutches. She refused to even try using them. I couldn’t make myself say no, yet I knew that somehow this was going too far.” Of course, the nature and severity of your child’s disability may affect how much he or she is able to WWW.TDSN.ORG

participate in household duties and so on. Peggy Finston remarks: “The issue, then, for each of us is what is a “realistic” amount of normality to expect from our child? If we expect too much, we run the risk of rejecting him as he is. If we expect too little, we will fail to encourage him to do the most he can with himself. There is no one answer for all of us, or even for all of us dealing with the same condition. The best we can do is to realize that this is an ongoing question that we need to consider.” Perhaps some of the most encouraging words for parents come from children who have disabilities, whose experiences and feelings are described in numerous books. One consistent idea they express is that when parents expect a child with a disability to develop his or her capabilities — whatever these may be — this empowers and strengthens the child. This sense of empowerment can be found, for example, in the dedication Tom Bradford wrote for his book about hearing loss; he dedicated the book to his mother “who never let me know that my hearing loss could have been a limitation.” Eli, a 12-year-old whose stroke resulted in several physical disabilities, writes, “My friends and family helped me overcome my fears. They encouraged me to try everything, even if I was determined that I couldn’t.” Fourteen-year-old Sarah says that, despite her artificial leg, “my parents sent me to a regular nursery school, to swimming lessons and camp — everything other kids did...I think my family’s encouragement has a lot to do with the fact that I have such a positive attitude. They never sat me in front of the TV or stopped me from doing anything I wanted to try. They gave me a normal childhood.” Robert, who has cerebral palsy, remembers that his mother said to him one day, “Robert, why don’t we focus on what you can do instead of what you can’t do?” This was, he believes, “my biggest turning point — I took off like a rocket!”

Grandparents Grandparents are often greatly affected by the birth of a child with a disability; the pain they feel may be two-fold — pain for their grandchild and pain for you, their own child. It is important to remember that they will need support and information, too, and that “the way you relate to them can create the setting for how WWW.TDSN.ORG

they will help or not help you, or how they will deal with the child.” Some grandparents may have difficulty accepting their grandchild’s disability, which is as normal as the stage of denial parents themselves may have experienced. Others will be a great source of help and support, and their involvement can benefit the nuclear family. (Seligman & Darling, 1989). Therefore, your parents and other members of the extended family need to be given opportunities to get to know your child as a person and not just a person with disabilities (Routburg, 1986, p. 32). Allowing them to become involved with your child may also allow you some much-needed time away from the responsibilities associated with caring for a child with special needs.

Child Care: From Babysitters to Respite Care All parents, at some time, will probably seek child care. For families with a child who needs more supervision or specialized assistance, child care may be difficult to find — or feel comfortable with. However, even if you do not work outside the home and do not need regular child care, you may benefit greatly from having child care on a periodic or even an ongoing basis; this will give you time to take care of personal matters, enjoy some leisure activity, or be relieved of the constant need to care for a child with a disability or chronic illness. Indeed, families who use child care on a regular basis report that it “not only gave us something to look forward to but also broke time down into pieces we felt we could handle.” Child care, particularly following a crisis, may be an essential factor in maintaining your family’s health, stamina, and equilibrium. The mother of a child with a chronic illness writes: “The week that our family stayed at the beach was the most wonderful gift... it gave us the opportunity to stand outside the situation and view it from a distance. It enabled us to review what had gone on before, to put things into perspective, think and plan. We were also physically restored, and were able to go on with much more strength ... caring for our daughter.” Basically, child care falls into several categories, ranging from the care provided by relatives, neighbors, or friends who help out, to babysitters, to the more specialized care provided through daycare facilities/ providers, respite care services, and nurses/medical

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specialists. Each family will need to determine its own level of need at any given time. The type of child care you select will depend upon a number of factors, including the nature of your child’s disability, the cost involved in the care, and the length of time for which the care will be provided. If your child requires more supervision or attention than normal but does not need specialized medical care per se, you might have a relative, family friend, or a responsible babysitter occasionally take care of your son or daughter with special needs. Child care also can be important for the well-being of children with disabilities, because it presents an opportunity for them to socialize with other children. Parents often want their child with disabilities to have the same opportunities as other children and have been disappointed to find that many daycare or preschool settings were not available or accessible to youngsters with disabilities. This kind of discrimination is now illegal. The Americans with Disabilities Act (ADA) calls for full access to daycare for children with disabilities. In some cases, the needs of a child will be such that a particular child care provider or center may not be equipped to care adequately for that child. The law now provides for flexibility in these cases; often, parents will have to be resourceful to help a provider become equipped or knowledgeable about how to care for the needs of a child or to find other sources of help. You can help child care providers by being as honest and direct as possible about your child’s needs. It may also be helpful to let providers know how much their care is needed by and supportive to your child. The partnership between parents and child care providers is very important, but it is especially so when the child has a special need. Research has shown that preschool and child care centers have the most success in integrating children with disabilities when staff accept and value diversity in the children they serve. Another option is respite care, a system of temporary child care provided by people familiar with the needs of children with disabilities. “Temporary” can range from an hour to several months, depending on the respite care provider and the needs and desires of the family. Many respite care providers have undergone specialized training and can knowledgeably care for children whose needs may range from close supervision to medical care.

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Respite care can be provided to infants, teenagers, or adults with special needs. In some cases, the Respite provider may be able to provide care only for the child with the disability; in other cases, care may be available for siblings as well. Respite care generally differs from daycare in that it is not available on a daily basis to allow a parent to return to the work force. Increasingly, respite care can be obtained through organizations that offer home-care or out-of-home services, either on an emergency basis or on a regular schedule. In many states, mental health agencies provide services which are either free of charge or priced on a sliding scale (according to parents’ ability to pay). To find out more about the respite services available in your vicinity, seek out groups or professionals who work with children your child’s age. The school system may be able to provide information, as may a local parent group. Another valuable source of information on respite care is the ARCH National Resource Center for Crisis Nurseries and Respite Care Services. ARCH operates the National Respite Locator Service whose mission is to help parents locate respite care in their area. Contact information for ARCH is provided in the “Organizations” section at the end of this News Digest. Other places to inquire: • Parent Training and Information Center (E.C.A.C. of North Carolina) • Disability organizations within the state • State Department of Mental Retardation • State Developmental Disabilities Council • State Program for Children with Special Health Needs • Departments of Health and Human Services, or Social Services; Department of Mental Health; • State and local Departments of Education; and • State Protection and Advocacy Agency.

Many of these organizations are listed in the telephone directory; NICHCY also makes available a State Resource Sheet, which lists telephone numbers and addresses for many of these programs or groups. Although many parents initially may feel reluctant to leave their child with special needs in the care of someone else, those who have tried it give ample testimony to its value in restoring their energy, sense of humor, and perspective.

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SADIE’S STORY

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FAMILY PERSPECTIVES | PARENTS

“

I am not proud of all the things I thought in those first few hours or days after receiving the diagnosis but I am also not ashamed. It is OK to think and feel whatever you are feeling.” BY CINDY DEXTER

O Fibrosis.

ur story begins in 2008 when we were pregnant with our son, Sam. During routine blood work, it was determined that I was a carrier for Cystic

We were told it was “nothing to be concerned about yet” and to have my husband come in with me to my next appointment and they would run his blood work and determine if he was also a carrier. The odds were very small that we would both carry the gene. Test results came back and he was a carrier as well. This began our path with genetic counseling and we opted to have an Amniocentesis to find out if our son would have Cystic Fibrosis. We had to wait a few agonizing weeks for the window to schedule the amnio and then another week or two for the results. I remember the phone call well. “Your test results are back and your baby is not even a carrier for Cystic Fibrosis!” All the other tests, Trisomy 18, 21, etc. all came back good as well. I didn’t really process anything past the remark that our baby was not even a carrier for CF. What a miracle! We were blessed! Skip ahead four years, we had contemplated expanding the family several times over the years. We waited and talked about the risks then returned to the genetic counselors to discuss our options. Basically there was no guarantee and it was too much money to not be guaranteed. So, we put our faith in the Lord and began trying to conceive our second child. A few months later we were pregnant. We went in for our first appointment to see the little swimmer and hear WWW.TDSN.ORG

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that precious little heartbeat. We informed our OBGYN that we would be opting to have the amnio again because this mama is all about being prepared. This time we were going to find out the gender, too, so I could prepare that pink nursery that my husband was so sure we were going to need. We waited patiently for the time to schedule the amnio. I was feeling very good about things and not nearly as worried as I had been the first time around. Although, there was always that conversation we had about how perfect our son was and how blessed we were that he wasn’t even a carrier. Could we be so lucky again? The ultrasound that they did along with the amnio went great. They did not pick up on any physical signs of anything abnormal. The heart looked great. We left feeling very good about things and waited patiently for the call with the results. It was a Thursday afternoon, and it had been a really busy day at work. I work from home which is a huge blessing but it made my husband nervous with the pregnancy as he works on the other side of town. It was a stormy day and I was ready for it to come to an end. The phone rang. “Hi, this is ....,” the voice said. I knew right away I was talking with the genetic counselor who had been helping us through this process. “Hi, yes,” I answered quickly, eager to get some good news. 34

TRIANGLE DOWN SYNDROME NETWORK

“Is this a good time,” she said in a soft tone. I could tell by her tone that the weather outside was not the only storm brewing that day. My heart sank. “Well, I am at home but my husband is not here. I take it you have the results?” I asked not really ready to hear what she was going to say. “Mrs. Dexter, I am sorry to inform you that your test results came back showing that your baby has Trisomy 21, otherwise known as Down syndrome,” she stated. I really can only piece together the conversation at this point. I told the counselor that I needed to call my husband and asked her to hold. I reached for my cell phone and called my husband at his office and he did not answer. I called his cell and he answered. “Hey baby! How are you doing?” he said in his typical cheerful voice. “Where are you right now?” I asked. “I am at the office sitting in my car,” he said and went on about something with his radio. “I have the genetic counselor on the other phone,” I said most likely interrupting his response. He could barely understand me through my tears. “The baby has Down syndrome.” “OK, is it a girl or a boy?” I love my husband. From the very first moment, he WWW.TDSN.ORG

wasn’t really shaken by the information I had just shared with him. He moved right on to get to the important information. Was he right about the gender? I switched back to the other phone and asked about the gender. “It’s a girl,” the counselor shared and I passed it on to my husband. And then one of us thought about the Cystic Fibrosis, “What about the Cystic Fibrosis?” I asked the counselor. “The baby has your genome for Cystic Fibrosis, so she will be a carrier,” she informed us. I shared the information to my husband. “Mrs. Dexter,” the counselor interrupted. “We will be providing the results to your OBGYN so they will have all the details as well. They will be calling you as well. Do you have any questions for me? We can refer you if you need to speak with someone. You don’t have much time to make a decision ...” I may have been a bit overly emotional, but I cut her off right there. “This testing was for information only. I just need time to process. Thank you.” I said, gathering myself for a moment. We said our goodbyes and I returned to the phone with my waiting husband. “Can you come home?” I asked. My husband said he would wrap things up and go get our son and come home. I messaged my boss at work, and he told me to sign off for the day. I left my desk and went straight to our bedroom and crawled in bed and cried like I have never cried before and tried to go to sleep. My husband began the commute home in a monsoon. A normal one-and-a-half hour commute from his office, to my son’s preschool, and then to the house turned into a three-hour commute with the torrential downpour and traffic. I was in and out of sleep trying to erase the information that I had received. Baby girl was very active and would not settle down, which only made things worse, because I couldn’t pretend for one moment that it wasn’t real. Those were the longest three hours of my life. I am not proud of all the things I thought in those first few hours or days after receiving the diagnosis, but I am also not ashamed. It is OK to think and feel whatever you are feeling. How would this affect our marriage? How would this affect our son? What will her life be like? What will our life be like? Can we take her in public? Will people stare at us? Will she graduate from high school? What about college? What about getting married? Will our family and friends accept her or just tolerate her because they have to? I felt like someone had snatched my healthy baby from inside of me and replaced her with this baby girl with

Down syndrome. I felt like I was being punished. I felt like I had done something wrong. This had to be my fault. Did I take my vitamins like I was supposed to? I admit I missed a few early on. Why me? Why us? It truly was like I was grieving the loss of a child while still pregnant with a new foreign child. And all of those little movements inside of me I so desperately wanted to stop was her way of reminding me that she was going to be OK. We had a little over four months between receiving the diagnosis and her due date. I shed a lot of tears during that time, but I am truly grateful for it. For me, I needed to cleanse my soul of those negative feelings. We spent that time preparing as we would have prepared for any other baby. We did read a few books and we had some additional appointments with the specialty hospital for additional ultrasounds to ensure everything was still going well. We contacted TDSN and they put us in touch with a wonderful family near us. They have beautiful twin girls, one of them just so happens to have Down syndrome. And slowly I healed. Our little girl came right on time. I went into labor on my due date (Oct. 28) and she came into the world on Oct. 29, at 1:23 a.m. Sadie Elizabeth Dexter.

Email me at cindydexter@hotmail.com if you need someone to talk to. This is a judgment-free zone. WWW.TDSN.ORG

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embarrassed by him but we’ve been embarrassed by our other boys as well. He has lots of friends and our families love him. We love him dearly and try to be parents that make him proud.

MATTHEW

STILL YOUR ‘NORMAL’ FAMILY

y son, Matthew, was born on Oct. 22, 17 years ago. It was, without question, the happiest day of my life. It was also the saddest. Matthew was four hours old when the pediatrician we’d never met came to tell us that our perfect, precious child had Down syndrome. It wasn’t possible ... my AFP was normal ... it was an easy, planned pregnancy ... we’d done everything right. After three days in the intensive care nursery, we brought our son home. It was overwhelming to be entrusted with this new life — this new life with very special needs. I grieved — for my son, for the “normal” child I didn’t have, and for myself. Would Matthew go to college, marry, drive a car? Would he be happy? Would people make fun of 36

him? Would we be embarrassed by him? ould he have friends? Would our families love him? Would we be the parents he needed? These are the questions I asked myself, my husband, and other parents. I still don’t know the answers to the first three questions but I do know that he’s happy (most of the time), I’ve never heard anyone make fun of him, and yes, we have been

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Matthew was in regular education classes through seventh grade but as the academics got more difficult we moved him to more resource classes. As a high-schooler he is in the Occupational Course of Study where classes are geared toward his level, job training as well as regular education electives. He was welcomed with open arms by the theater company and enjoys the Middle Earth Club meeting every week. He LOVES high school! Matthew is active in community theater, enjoys movies, video games and hanging with his brothers. He also picks on his brothers, sometimes ignores his parents, and doesn’t like vegetables. All in all, it’s turned out much better than I thought possible 17 years ago. — Michelle WWW.TDSN.ORG

SETH

FIND TRUE HAPPINESS

h, my gosh I was pregnant again. It was 5 months into the pregnancy before I knew I was having a baby. I found this out at the OBGYN office for the appointment to start the process of having my tubes tied. My husband and I were very worried as our last child was a very difficult pregnancy. To this day I feel that God had hidden this little life in my womb until I could do nothing else but have him. He came premature via emergency c-section at 36 weeks. Tiny body with these huge brown eyes. I was to ill to see him for three days. I was not told he had Down syndrome until one day afterward. I remember dragging my tubes and machines down the hall all by myself to meet the new life. The moment I first held him in my arms was the first and the last time I cried for him. With all that was going on, I could not bring myself to name him. The interns called him Seth Angelo (God’s anointed angel). Introducing him to my family was proving to be trickier than I had anticipated. My family is very extended and had already experienced the early loss of one person with Down syndrome. At first they did not know what to make of Seth. But as time went by, he became the sweetheart of the family. He is the forever sunshine in our lives. I remember one day, watching my daughter Michelle show Seth how to dress himself. She had to repeat the steps more than 10 times. Now Seth puts together his own outfits. My son knows no strangers and is cool and

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hip to the latest songs, dance moves and movies. Earlier on I worried about how the two older ones would accommodate Seth in their play lives. My oldest son put it in a very clear but simple perspective. “Mom, he said, “Seth is not just Down syndrome, he is my brother also.” If you want to be Zach’s friend, you have to be Seth’s friend, because Zach is not going anywhere without Seth. Thank God for his many blessings, because now I know that Seth will always have Zach and Michelle looking out for him long after mom and dad are gone. We have all pulled inspiration from Seth’s life. We no longer talk of what we cannot do, only on what we need to try again or look at differently. Let me conclude by repeating a conversation I had with an emergency room nurse. “Madam,” she said, “what is wrong with your child?” I explained he has a fever, etc. “No,” she clarified, “why does he talk like that?” I explained he has Down syndrome. “I am so sorry,” she said. “That’s just terrible.” Perplexed by her reaction, I thought she still doesn’t know. So I let her in on the secret to a joyful life. In order to find true happiness, you must first have a child with Down syndrome. — Elizabeth | (919) 419-9161

RYAN

STOP, SMELL THE ROSES

hen my son Ryan was born, he was quite a surprise. I refused the testing during pregnancy thinking all would be well, and if not, we knew we would not terminate the

pregnancy. Adoption was also not an option for us. I do not think anyone would or could love this child the way he should be loved or would be loved by me, his mother. So no one knew, not even the doctors, that he had Down syndrome until he was born. I didn’t know until the doctor told me hours later and only because he stopped breathing, or they would have waited for the correct testing to confirm trisomy 21. We had no knowledge regarding Down syndrome or any special needs child. I wondered as I looked at him why his nose looked different from my other son. Other than that, I could not tell he had Down syndrome just by looking at him. He looked perfect to me. It was difficult to listen to all the nurses and doctors giving me information regarding Down syndrome. At the time, I was still looking at Ryan and saying, “I still don’t see anything,” and “he looks like all the other baby’s except for his nose.” A lot of information that was given was scary and confusing, to say the least. When we left the hospital and went home, we automatically fell right into the baby routine. Nothing was different about caring for Ryan other than eating; he ate slowly due to breathing difficulties because of endo cardio cushion defect (heart defect). We held him the same, dressed him, bathed him, put him to sleep, talked to, loved, hugged and kissed him just like our first son. The only thing that I kept finding myself saying to Ryan that was different was, “I’m so sorry.” “I’m sorry for all the things that NEW PARENT HANDBOOK

FAMILY PERSPECTIVES | PARENTS you are going to go through.” Testing, doctor appointments, surgery. I could not help how badly I felt that he needed to go through all of that. After he was 3 months old, he had his open-heart surgery to repair his “boo boo” heart. We would tell his big brother that he had a boo boo heart and needed to get it fixed. That was the worst few days of our lives. Terrified would be the word to describe waiting for them to come and tell us he was all right and would be in the NICU shortly so that we could touch him and tell him we were there and love him with all our hearts. “Please get well,” was what I kept saying in replace of “I’m sorry.” Many prayers during this difficult time. We made it through. I am grateful that people now realize that babies born with Down syndrome are a special gift from God. The only thing I could say that sets them apart from all others is their innocence, I truly do not think they are capable of being prejudiced or hateful to anyone or anything. As I write this, Ryan is 4. He does not talk much yet, but I love to hear him call me the way only Ryan can — “Moum.” I always know that in the end, he has made me a better person — more patient, understanding, compassionate and most of all, more loving. Ryan touches everyone that he knows in a positive way. I think anyone that knows him will tell you that he literally makes you stop to smell the roses. — Danielle

WESLEY

A FATHER’S PERSPECTIVE

ne look at the geneticist’s face, and we knew. No matter how much I had been preparing myself for the worst, I cringed when I heard the words Down syndrome. In complete ignorance, I envisioned a child’s mind trapped in a grown body; a vegetable being spoon-fed in the corner while staring off into space. I had no idea. After the doctor left, I held my wife. We sobbed in each other’s arms. With each tear, I let go of another dream, all the visions that had collected over time of what my son would be and do. He was supposed to exceed all my good qualities and make up for all my bad. We had no choice but to quickly pull ourselves back together. Our son needed us. Despite being born full-term, Wesley was only five pounds. He was also born with a duodenal atresia — he didn’t have all his intestines. We hadn’t caught it soon enough, which gave him time to suck a lot of vomit into his lungs. This turned into pneumonia before doctors had the chance to perform surgery. That first week was the worst. No one knew if he was going to make it. It seemed Wesley was fighting for every breath. I spent countless hours sticking my finger through the porthole of his incubator. I was always surprised at how strong his grip was; he held on tightly as if he had purpose, as if he wanted to keep going.

quite sure which of us was doing the comforting. He suffered through a lot the weeks following surgery, yet doctors were amazed at his recovery. We were told to expect a minimum of six weeks, but we took him home on his one month birthday. I was amazed. Once he was home, I looked at this tiny little baby, scarred and bruised, but smiling. It struck me — here was the strongest human being I’d ever met. In the three years since, Wesley has proven his inner strength again and again. I am amazed at how hard he pushes himself. He tackles each new goal with the drive to succeed. But whether his ambitions are as significant as learning to walk or as small as learning to eat with a fork, he refuses to give up until he has solved the problem. Every new accomplishment is an opportunity for our whole family to celebrate. As I write this, Wesley is upstairs sleeping soundly, listening to the local classical music station. He will get up at dawn, then quietly play with his toys, waiting for the rest of the house to stir. When we call breakfast, Wesley will bound downstairs greeting each family member with smiling and waving. That’s how Wesley lives. He owns each new day with cheerful gusto, excited to learn what adventure the day will bring. It seems silly now, realizing how far off base my initial assumptions were. I have the greatest love and admiration for Wesley. I am so thankful he’s my son. — Anthony

It was at those times I was never 38

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CAROLINE GRACE HEART & INSPIRATION

xpecting Caroline… Caroline is my first born, and when I found out I was pregnant I was so surprised. We had tried to have a family for three years with no luck. My husband and I were so excited. All of her non-invasive testing that is normally done throughout a pregnancy came back normal, until the Level II ultrasound. At 22 weeks into my pregnancy, the doctors found a heart defect: AVSD (atrioventricular septal defect). With this discovery also came the risk of Down syndrome at 30 percent odds. We had to know, and did the amnio in the office that day. We were phoned with the results the next day and confirmed our worst fear, or so we thought at the time. That was a Friday. We were devastated. We had some serious soul searching to do over the weekend. We had a cardiology appointment that following Monday to find out more about the heart defect. We read everything we could get our hands on about Down syndrome as well as the AVSD in order to make an educated decision going forward. We knew this would affect our relationship for the rest of our lives and had to play out every scenario before making our decision. The fact that we had such a hard time conceiving, my Catholic faith, and just the answer to the question of whether or not I personally could move on if we chose not to continue the pregnancy, all had a huge impact on our decision. After meeting with our excellent cardiologist (Dr. Milazzo at Duke Childrens), I knew that I could do this. Tackle the Down syndrome and the AVSD, that is. So that was WWW.TDSN.ORG

Caroline Grace (top right) plays with friends on the merry-go-round at a local park.

our decision. We read and watched everything we could get our hands on and talked to people about our situation. That seemed to help and prepare us more than anything. I joined Triangle Down Syndrome Network within two weeks of our diagnosis and attended a Mom’s Night Out, as well as the Buddy Walk during my pregnancy. It was all scary, but it was what I needed to do to be prepared. I didn’t

want the birth of my daughter to be anything less than a celebration of a new life. I wanted all of the uncertainty and apprehension over with prior to her arrival. And for the most part it was; but don’t think I didn’t hold onto that 1 percent of hope that our prenatal test could be wrong. The minute I laid eyes on her, I knew the doctors were right. I spent all of one second focused on Down syndrome. From then on it was all NEW PARENT HANDBOOK

FAMILY PERSPECTIVES | PARENTS about my little Caroline and her health, not about Down syndrome. In the beginning, I always wondered if people could tell when they looked at her. Now she’s 2 and a half. I have no time to worry about what people are thinking or saying, I’m so focused on her and what she’s into. Matter of fact, I don’t even see the Down syndrome anymore. I only see my beautiful little girl, Caroline! Not a day goes by that I don’t count my blessings as I replay those crucial days over and over in my head, and I am just so glad that we made the decisions that we did. I can’t imagine life without her. You always hear people say, “I wouldn’t change it if I could.” Well that’s true to an extent. I wouldn’t change her at all, I love everything about her. What I would change is the perspective people have toward any person with a disability. She has taught us so much and brought us so much joy as well as everyone around her. She is my heart and my inspiration. — Jane

GABRIEL

GIFT SENT FROM GOD

y name is Jessica, and I would like to tell you how my son has brought so much joy to our lives. It all began when my doctors diagnosed my child with down syndrome when I was 7 months pregnant with him. At first I really did not know what to think. I had every question in my head on what I possibly did wrong. The doctors told me over and over that my husband and I had nothing to do with this. I stayed in denial for sometime. 40

I started my research on everything possible and truly realized they were all right. My next emotion was, how am I going to give everything that this little boy is going need? By the time little Gabriel was born, the sight of his face took all the fear away. I knew he needed me and from that moment on, I knew I had needed him. Gabriel was born very healthy. He does have a thyroid problem and began having infantile spasms at the age of 6 months, but with medication we were able to control everything. He has physical therapy, occupational therapy and speech therapy every week. He is doing fantastic. If I would have any advice for new parents is breathe and take one step at a time. My son is so loving and tender hearted. Every time you look at him to make eye contact, he just gives the most beautiful smile no matter what the situation is. For all of the time that I spent worrying for him and being scared of not knowing what to do, his joy and love showed me everything was going to be okay. I see Gabriel as if he does not have this at all and I hope everyone else will too. He was a gift sent from God, and I thank him every day for him. — Jessica

ALYSSA

IMMEASURABLY BETTER

o answer the question we all asked at the birth of our child: Yes ... life as you know it is over. As with any major life change, you are set irrevocably upon a new course now that you have a baby. Add the fact that your precious

TRIANGLE DOWN SYNDROME NETWORK

child has Down syndrome, and you will learn that you are embarking on a privileged journey of enlightenment and inspiration. We were blessed with Alyssa’s arrival ten years ago. There is so much we could tell you, but we have chosen to share the most important lesson we have learned. Alyssa is a child created purposefully by God to carry out His plan in this world. He did not make a mistake in creating her. He can and will use her life for good. There is hope and joy in this child’s existence. Focusing on this lesson has freed us to dream big for Alyssa’s future. You may be mourning the loss of the dream “ideal” child. You may be focusing on limitations. But we’re here to tell you that so much is possible. Educate yourself by reading about and meeting people with Down syndrome. Trust that you are the expert on your child and build a new vision in the rubble of your old dreams. Focus on your vision and do not waver from it as you make decisions over the years. Your child can use the unique gifts given to him or her by God. Your child can meaningfully participate in our community. Your child is a terrific person! Alyssa continues to be an inspiration to us. We don’t know if we will ever fully appreciate her challenges. We are, however, now more fully aware of what qualities are truly important in a person. Honesty. Discipline. Perseverance. Faith. Courage. Integrity. These are the essentials of good character and what we nurture in Alyssa. No ... life will never be the same again. It will be immeasurably better. WWW.TDSN.ORG

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LANEY

PERFECT LITTLE REDHEAD

aney Elizabeth Macario came into the world and changed our lives forever, much as any child does. We had a positive AFP test, giving rise to the possibility of having a child with Down syndrome. After two separate level-two ultra-sounds, and opting not to have amnio, the doctors all but assured us we had little to worry about. The chances of our daughter being born with Down syndrome were remote at best. What a hectic week, that early part of September before she was born. Laney’s father Michael was starting a new career, heading off to the Raleigh Police Academy. Laney’s brother Garrett was off to a new year at school. Laney’s mother Lisa was dealing with the final stages of pregnancy. After an OB visit, given Lisa’s history of hypertension, the decision was made to induce labor. This part actually went quite smoothly. A few hours of druginduced labor and out came Laney. All in all, it went better than expected. Laney certainly didn’t cry as much as Garrett did when he was born seven years earlier. In fact, it seemed all she did was sleep. She was a bit smaller than we thought she might be. Those tiny little ears, those perfect little lips, those precious little hands and feet – yep, everything as it should be. The most remarkable feature was all that beautiful red hair! We didn’t know a baby could be born with so much hair. Thank God 42

Laney Elizabeth Macario

she looks like her mother! Our perfect little daughter to go with our perfect son — our family now seemed complete. It was the second morning after the birth. Michael had to go to the Police Academy because his formal training would begin in two days. The grandparents were keeping a watchful eye over Lisa and Laney. Garrett was off to school. A sergeant at the Police Academy noticed Michael walking through the hall and asked what he was doing there. Michael replied that he was there for work. The sergeant, having almost unbelievable intuition, told Michael to go be with his wife. On the way from the Academy back to the hospital, Michael received a phone call from his father-in-law, seated in the hospital room with Lisa and Laney. “Get here as soon as you can” were the only words

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he could say. Without knowing anything else, Michael already knew the story. At the hospital room, there were Lisa and her mother, both crying. Lisa’s father sat in silence. And there lay Laney, sleeping soundly, unaware of any changes in her life. “I can’t say it” said Lisa, as her husband walked toward her. “Laney has Down syndrome.” There you have it. Down syndrome. We heard of it, thought we knew some people whose children may have had it, and knew little to nothing about it. Our family followed the same stages many go through when difficult incidents occur. There was denial, anger, bewilderment, total confusion and then, ultimately, acceptance. There were the family members who tried to find that one feature on Laney that would reveal WWW.TDSN.ORG

the truth, like an extra finger or a third leg. Some believed she would grow out of it. Others told us she didn’t look like anything was wrong. And then there were the throngs of supporters, try as they might, who assured us that God chooses special families for special children. If one more person told us that, watch out! As the months passed, we grew hungry for knowledge. Lisa, in particular, began to read and call and reach out. She has gone from a parent in complete denial to one of the strongest advocates for special needs children out there today. Her passion, not just for Laney, but for all children, fuels her desire to help others. Michael only sees his perfect little red-headed girl, a daughter so special and wonderful, even his most vivid dreams and hopes could not have come close the person Laney really is. Garrett only sees his little sister and his role as protector. He tells everyone she is annoying but his love for her shows no bounds. Laney is the sweetest, gentlest, warmest, brightest, most stubborn, thoughtful, beautiful, loveable, cutest bundle of complete bliss that a family could ever hope for. Her mission on Earth, coming straight from God, is to make people smile. That is what she does each day. She is surrounded by joy and light, even in the midst of her most frantic tantrums (and she has many these days). In her eyes — those beautiful blue, thoughtful eyes — the world is revealed to us. It is a world where all is not perfect, plans don’t always go the way people intend them, WWW.TDSN.ORG

and the littlest ones teach us more about the way life really works than we ever thought possible. We have learned so much from Laney and Garrett. As a family, we have come to understand our limitations, re-think our purpose, re-evaluate our priorities, and give thanks to God for the tremendous blessings bestowed upon us. No, this is not the way we thought it would be… IT’S FAR FAR BETTER! — Lisa and Michael

JAMIE

SO MUCH ‘WONDERFUL’

y name is Tina McGhee and I’m excited to congratulate you on the birth of your new little one. Having a baby is such a beautiful and rewarding experience and I’m sure you will be the greatest parents. I know that it may not seem like it right now, but you have so many wonderful things to look forward to. Your new baby will reach all the baby milestones, just at a little slower pace. Life does go on and in a very, very special way. You have now entered into a new breed of people — parents of children with special needs. And what a wonderful, compassionate, loving breed of people we are. I have a beautiful daughter named Jamie who will turn 24 on Nov. 14, 2014. Jamie has been such a blessing to us and all those around her. We would not change a thing if we had it to do over again.

Miracle League softball, was a cheerleader for the Super Stars and loves bowling, singing, swimming, drama ... the list goes on. She plays hand bells at our church and she is also in the music signing choir with typically functioning peers. She loves to visit assisted living and rest homes. She will sing, dance, talk, pray or whatever the men and women want to do while she is there. They just love her. Jamie is very self sufficient and self confident because we have treated her no differently than our son, Jesse. We allowed her to explore, and attempt things on her own. We never sheltered her or made her feel different from her peers. She is very capable of doing anything she sets her mind to. It’s amazing and incredible. I never thought this would be possible when we were first told that Jamie had Down syndrome. One very important piece of advice I would like to give you is to love your child like there’s no tomorrow and it’s very, very important that you as parents are your child’s No. 1 advocate. Please, don’t settle for anything less than what you want for your child from day one through out their lifetime. I wish for you so much joy, happiness and love with your special new baby. Just remember, there are all kinds of supports available to you anytime you need it. God Bless and keep you and your new little one! — Tina

Jamie is very active in the community and church. She played NEW PARENT HANDBOOK

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BRETT

HAPPY, CHARMING, LOVING

rett was born two weeks early, and we barely made it to the hospital before he arrived. The labor was quick, and he was letting us know that he was ready to arrive. After he was born, something just didn’t seem right. The baby that had been kicking and seemed perfect before didn’t open his eyes and barely moved. That first night, I just stayed up and held him. The next morning, while my husband was home with our daughter, a pediatrician came in and said that they suspected that Brett had Down syndrome. I was shocked and really didn’t know what to think. I didn’t know much of anything about Down syndrome before Brett. We had chosen not to do the test during pregnancy because to us, it wouldn’t have changed anything. And I am glad we didn’t because it would have changed things, rather than allowing me time to meet and fall in love with my wonderful son… I would have been worried and unsure for so many months of my pregnancy. I had to be the one to tell my husband that day. Stupid me decided to tell him on the phone — not very smart — but I was very upset. I didn’t know what to think, what it meant… anything. When my husband returned to the hospital, the hospital personnel gave us this New Parent Handbook from TDSN. At first, I really didn’t want anything to do with it. I was convinced that they were wrong, and I wouldn’t be swayed until I got the test results. But in the back of my mind, I kept thinking about the dreams I started 44

having (out of the blue) in my last month of pregnancy… that my baby had Down syndrome. I couldn’t believe what they were telling me. I kept going back in my mind trying to determine what I did wrong. Why me? What about all my dreams for my son? Brett the quarterback (named after Brett Favre), Brett the Prom King, Brett the handsome surfer with the bronzed skin and that gorgeous smile, Brett and his beautiful model wife that would give me two gorgeous grandchildren. My husband and I tried to stay positive but would slip back to the same questions. What would become of my beautiful son? Would people make fun of him? Would he be accepted? Would he ever find anyone to love who would love him in return? Would he ever have the opportunity to be independent? Those first couple of weeks until we got the test results and a few weeks after that were filled with questions and sadness, but yet at the same time a joy whenever I would hold him or watch him sleep, realizing that he was my beautiful baby boy. It took a couple of weeks after the test results were confirmed for me to change. I finally realized God doesn’t give you anything that you can’t handle, and He chose me to be Brett’s mom. I stopped thinking about all the things in life that I thought that Brett wouldn’t be able to do, and I dedicated myself to allowing Brett every opportunity to make his life the best it could be. Brett is such a happy, charming and loving little boy. I can’t imagine our family without him. His smile lights up any room. His laugh warms my heart. We celebrate every accomplishment. He is a typical little

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boy in every sense of the word. He loves to chase around the “big kids” and make them play with him. He flirts with every blond girl he ever meets. (He’s been known to take off the other way chasing after young teenage girls.) He chases our dogs and tries to pull their tails. He tries to climb on and get into everything. He loves watching football with Dad and tries to steal the remote whenever he can. He does whatever it takes to make you laugh and clap for him. And if you forget to clap, he will do it for you. He loves anything with music, dancing, laughing, being the center of attention, swinging, going down slides, swimming in the pool and walking along the beach. He also loves pizza, spaghetti, pancakes, sweet tea, orange juice, cheese and ice cream. Oh and don’t forget — he loves Elmo. Don’t get me wrong, there have been some struggles. He was hospitalized with pneumonia four times before he was 18 months. He continues to struggle with chronic fluid behind his eardrums, which has delayed his speech. He has to wear glasses to see up close, and keeping them on can be a chore. And boy can that child be stubborn. Sure, life is different since he came into our lives, but that’s true of any second child. Our whole family has grown together over the past couple of years, and I wouldn’t change a thing. His relationship with his older sister, Bree, is such a blessing to me. They can fight like any siblings can, but they love each other so much! She is so good with him, and you can tell that he would follow her to the ends of the Earth. However, he does love to knock her over and jump on her. And she likes to hold him down and tickle him. Our family hasn’t been held back WWW.TDSN.ORG

by Down syndrome. We are more active than most people we know, and Brett not only adapts, he enjoys the ride. I still struggle sometimes allowing myself to get too caught up in Brett’s future and making sure he becomes whatever he can. So my advice is (and I tell this to myself all the time) — none of our children’s futures are guaranteed, so do the best you can, put your faith and trust in God, provide all the opportunities you can provide, but most of all, enjoy every minute. It’s so worth it! — Nicki

ELEANOR

EVERYTHING AND MORE

he day Eleanor was born everyone was over-the-top excited because we had waited so long — and struggled so hard — to have a second child (her brother Will is four years older). It was a shock to find out she had Down syndrome. We had all the nonevasive testing done and the doctors never discovered any problems with the pregnancy. We held out hope that they were wrong. We had to wait two weeks for a complete genetic testing to be done to be sure. We sat stunned as the doctor called my husband and me in a little office and told us that she did indeed have Trisomy 21. There was someone from the hospital named Cindy who joined us at that meeting and told us that she also had an adult child with Down syndrome. She told us that although we couldn’t see it at the time, we would grow to see Eleanor as a truly blessing. I think back at that moment, WWW.TDSN.ORG

Eleanor and her brother WIll.

and although I can remember the pain and anguish of the moment, I couldn’t agree with Cindy more. Our Eleanor is sweet and gentle and kind. She is everything we wanted our little girl to be and more. Sometimes I wonder if she was sent here to show people what unconditional love is. Everywhere we go, people stop and talk to Eleanor. Sometimes they just smile or wave, other times they want to hold her and hug her. I realize how stinking cute she is because I’m her mom, but I have to admit that the

genuine fondness people show is overwhelming to me. With all that said, Eleanor is not treated any differently at home. She has her chores, including helping to feed the cat, clearing her plate and helping clean up her messes (and boy is she messy). She struggles with some self-help skills, but we are working on that along the way. Her older brother still dresses with his shirts on backwards, so I can’t complain. Eleanor has her playmates, mimics everything her brother does, aggravates the cat, rides a horse, NEW PARENT HANDBOOK

FAMILY PERSPECTIVES | PARENTS carries a pocketbook and loves pretending to play “house” with her dolls. She looks gorgeous in pink and breaks out a pretty funny dance move every time the music comes on. She is a stereotypical little girl. Sometimes we bring Eleanor’s brother along to some of the therapy sessions so he can appreciate how hard his little sister is working. I can see an unspoken understanding in his eyes as she works through speech therapy and as we all celebrate the little successes of that day. He is growing to be a more compassionate person because of his sister, and it’s not anything I ever had to teach him. I can honestly say that I, too, have become a better person because of her. She has tremendous love and acceptance of everyone. She humbles me. The best thing we did for our family when we realized we had entered “disability world” was to learn everything we could about Down syndrome and join TDSN to get support and information. I can honestly say that I have learned more from the parents within TDSN than from the internet. These families share the same ups and downs, loves and pains, joys and frustrations. They know you better than you do right now. If you reach out to them, they will help you and show you the joy of being a parent with a child with Down syndrome without doing anything other than being themselves. So to make a long story short, life as you know it is about to change — for the better! You will have your share of challenges (as with all children), but they will be outweighed by the joys and accomplishments as your child grows. The great part is that you will grow too.

MAGGIE

OUR LITTLE PRINCESS

y wife and I have been married for more than 11 years. After getting married in Texas and then moving her up to Cary, we spent the first couple years making sure that we knew each other well enough to add a third person to the mix. We started trying to have children starting about the sixth year of our marriage and after three miscarriages were blessed to have an embryo survive past 12 weeks. At week 10, they offered us the CVS and protein algorithm diagnostic to assess the probability of genetic abnormalities. We decided on the protein algorithm. The results showed that we had a reasonable chance either way. At week 14, they offered us amniocentesis and we immediately took their offer. The results from the amnio came back positive for Trisomy 21. We were contacted by our friends from the Duke Genetics Clinic and they gave us lots of educational material — including the New Parent Handbook from TDSN. They asked us what our plans were, and I remember my wife asking, “You mean for the summer?” They seemed surprised by her answer and more specifically asked about the baby and our intentions of keeping the pregnancy. My wife responded without hesitation that we had agreed that we were blessed with whatever baby chose us to have us as parents and they would be seeing a lot more of us. They seemed pleasantly surprised with our decision. I assume our pregnancy was

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not to unlike most pregnancies where the clinicians know that they are working with a high-risk pregnancy. Between Dr. Wills and his staff, Dr. Bass and his staff, and Dr. Milazzo and his staff, we had every angle covered that we or they could imagine. However, after all the ultra sounds, checks on fluids, developmental milestones,and signs of good health, we could not detect any challenges — everything seemed like clear skies as far as we could see. At 20 weeks, however, we found that we had a placenta previa, and Cindy was confined to bedrest in the hospital for the 14 weeks that were left before they would end up having to deliver Maggie early. 34 weeks, 2 a.m. on New Years Eve: I sprung instantly from the air mattress I had been sleeping on next to Cindy’s hospital bed to hear Cindy’s calm request for me to get a nurse. The nurse quickly connected Cindy to the monitors and called our doctor. The doctor noted that we were closer to the “safe” zone and that for many good reasons it would make sense to go ahead and do the C-section — he gave us a quick rundown on how the C-section should go and estimated about 45 minutes for the whole thing end to end. Three and half hours after the C-section began, Cindy was wheeled into the surgical ICU for recovery from a previa acretia operation. Maggie was fine and in the Neonatal Intensive Care Unit where I had a chance to hold her and change her for her first time. Cindy was back in her room later that night and in the NICU a day later to see her new baby girl. Maggie had temperature control for a couple days and light treatment

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for a couple days. Ultimately, she spent about 4-5 weeks in NICU before she was able to take all her food by mouth and we took her home. She had passed all of her echocardiogram monitoring with flying colors and all of the intestinal and kidney related issues appeared to be normal. We had waited about two weeks before officially naming her — Margaret Kay Ward — “Maggie.” Maggie is now a healthy 24 month, 30-pound, 28-inch blond, blue-eyed smiling baby girl. Our friends, family and even strangers tell every time that they play with Maggie that she is the happiest baby they have ever had the pleasure to know. Her godmother reminds us daily that “If God made anything sweeter, he kept it for himself.” In her short time here on Earth, she has already done more of God’s work than most people do in a lifetime. We, of course, believe all the good stuff — but we are constantly amazed at the number of people that are captivated by Maggie and her “smiling being.” Someone told us that she doesn’t just smile with her mouth and her eyes, but that she smiles with her whole body and it intoxicates/heals people who get a chance to spend time with her. We have been surprised just how many people are drawn to Maggie whether it is in the grocery store, Target, Home Depot, walking in the park, cruising around the neighborhood or even eating in a restaurant. We have had people come to see us after they finish their meal in a restaurant to tell us that her playful spirit captivated them and left them feeling joyful. Co-workers are known to “hijack” Maggie from me when Cindy drops WWW.TDSN.ORG

her off and pass her around until everyone has had a chance to get their “Maggie fix.” I think they call it that because I have heard more people than I can count tell me that Maggie has fixed the bad day or the bad week that they were having. Cindy and I are convinced that when Maggie is asleep at night, she is actually traveling around the world as an angel taking care of people who are in need. She has been a blessing to us, and we can’t imagine a moment without her. She has some of the proudest grandparents who cherish every small accomplishment, three god parents who go out of their way to check in on her all the time, and more adoptive parents in this community and around the United States than any child has ever had the honor of calling “family.” We know that she has many angels in her life and can’t thank the nurses at WakeMed, coworkers, family, and friends for all of their support, gifts, and love that they have provided throughout the pregnancy, the challenging, birth, and the resulting glory that is in every fiber of Maggie’s existence. Thank you, we love you all, and can’t wait to share Maggie’s life with you. — Brent and Cindy

BENJAMIN GABRIEL ABIGAIL

ONE BEAUTIFUL FAMILY

“A

re these children from a home?” The words were spoken in a demanding and demeaning tone by the lady

handing out samples in the frozen food section as we did our grocery shopping. The clear implication from her tone was that my children are defective and do not need or deserve a good home with a loving family. Obviously they are from some kind of a home. This was not the first time we had received a question of this nature — and it certainly won’t be the last — but this one hit my heart. Please allow me to explain. God has blessed us with five beautiful children, two through birth (Josiah, 12; and Zechariah, age 2), and three through adoption (Benjamin, 7; Gabriel, 4; and Abigail, 3). Benjamin, Gabriel and Abigail all have Down syndrome. Benjamin has been very healthy, but both Gabriel and Abigail have heart issues among other medical concerns. Gabriel has been healthy since his heart surgery at 7 months old, but Abby continues to struggle with serious medical issues. She has had three heart surgeries, many hospitalizations and still requires g-tube feedings, 24-7 oxygen and pulse oximeter monitoring. I admit that our family stands out in a crowd. Two double strollers, bulging diaper bag, oxygen tank and monitor. Then a pair of shoes or glasses flies across the aisle followed by squeals of laughter from the offender. Since we home school, we might be out on a field trip during the school day, and we are always trying to learn something new from every situation. We hear many of the same questions and comments over and over. The most common one is some variation of, “Boy, you really have your hands full!” We try to answer with a smile, “Yes, we have been so very blessed!” Another favorite is, “Are all of NEW PARENT HANDBOOK

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these children yours?” When asked by someone genuinely interested and kind we usually answer, “Yes and each one is a blessing from God!” But if the question comes in a biting tone implying that by having two children and adopting three we are somehow trying to single-handedly overpopulate the earth, we try to smile and say, “Yes, but the other 10 are at home with a sitter!” One question that threatens to send me off the deep end is, “Which ones are your real children?” My husband and I are both psychologists, so that question always makes us wonder how many imaginary people they see. Giving them the benefit of the doubt, though, we usually answer, “All of our kids are real.” Many times the question people seem to really want to ask but aren’t sure if they should is, Why would you want to adopt children with Down syndrome when they have so many problems?” That is often the perception that others have of our beautiful children because they have heard little pieces of secondhand information or stories. I wish anyone who sees my kids as problems could spend a day at our house because it might change their minds! They would see many of the things they expected, such as Benjamin still potty training at 7 years old and Gabriel not nearly ready to start potty training at 4 years old. They would see medical and therapy equipment. A constant stream of therapists and doctor’s appointments. Broken sign language. Meltdowns with building frustration. But if they will look a little closer, they will see that the WWW.TDSN.ORG

meltdown does not last long and is usually followed by big smiles and a sincere apology. If they could see what I see everyday, many of them would rush out and do exactly what we’ve done in adopting some very special children and giving them a loving family to blossom in.They would see the smiles of joy and triumph in the smallest things. They would see children who have to work hard to learn every skill, and are so very proud of themselves when they succeed. They would see children sharing from the depths of their heart all of the joy and peace that is within them. I cry when I watch my two amazing, typically developing children learning to give of themselves by helping their brothers and sister. They are learning to serve and care for others, as well as to learn from them. It warms m heart when people come up to us at the grocery store, church, etc. to share a story about someone with Down syndrome who has touched their lives or just to tell us we have beautiful children. They often want to encourage us that everyone does not agree with society’s assessment of our children as damaged, broken or barely deserving to live. It broke our hearts to learn that nearly 80 percent of babies are aborted when the mother has a prenatal screening that suggests Down syndrome. So why did we choose to adopt three children with Down syndrome? Because God broke through our own preconceived notions and showed us the wonderful blessing awaiting us. Yes we have some tough days, but we have learned so much more from all our five of our dear children than we could possibly

teach them in a lifetime. If you are reading this article, then someone with Down syndrome has probably touched your life. If so, you know the struggles and probably understand why some people look at us a little cross-eyed. But you also see what many others miss because their eyes are closed to the inherit worth, dignity and value of our precious children who just happen to have an extra chromosome. You know the late nights and the worries, but you also know the smiles of joy at such sweet, simple things. Our kids have taught us so much about acceptance, perseverance, enduring hardship and the value of a human life. Perhaps you have also grown tired after many therapy and medical appointments, and you’ve wanted to give up trying to practice just one more skill. As you go about your busy day, my prayer for you is great patience, kindness and perseverance, for you will need all of these to care for your very special child. But I also pray that God will show you the very special part of Himself that is deep within your child’s heart. That special smile. That sweet, sharing spirit. The simple things of life being lit up. My children have taught me so much and I am grateful for each of them every day. So what did I say to the lady who wanted to know if my kids were from a home? After a split second of pitying her for being much more disabled in her heart than my kids are in their bodies, I said, “Yes, they live in my home. These are my beautiful children!”

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WILLIAM

COUNTING OUR BLESSINGS

hen William was born, we had no idea he had Down syndrome. We also had no idea he had a heart with two large holes in it that would require open heart surgery at the tender age of 2 1/2 months. We also didn’t know how he would touch our lives, our hearts and forever change the way we and everyone in his life now sees the world around them. Will has been a fighter from the very beginning — battling pneumonia at 6 weeks, followed by more than a month of numerous tests for unexplained fevers and an extended hospital stay, ultimately leading to the surgery to repair his tiny 12-week-old heart. What a miracle! He survived the surgery and has been a picture of health since he was a small baby. Will continually amazes and inspires us with every medical, physical, developmental and emotional challenge he faces. His smile lights up a room and he seems to steal the spotlight from his siblings most of the time. Even when he is being a ‘typical 5-year-old’, you can’t help but laugh at his antics. Will is now a picture of health — walking, running and jumping as he tries to keep up with all of his friends. He talks non-stop and there isn’t much he can’t do that all of his peers can do too. We have realized over the past five years that Will is much more like his friends than he is different. He loves sports. Will swims in the summer, plays in the snow in the winter, is learning to ride a tricycle, rides horses 50

and plays Pop Warner flag football. He also loves to play outside, color and even fights with his sister and brother. We had our proudest moment this year when Will started kindergarten. He walked right in, joined the other children and barely noticed our leaving as we walked out in joyful tears. He now rides the bus to school everyday, along with his sister and neighbors. He is also learning to read and write and very much enjoys school. When Will was born, we could never have imagined the joy, love and fulfillment he would bring to our entire family and circle of friends. He is our little miracle and we are so thankful God has given us Will to open our eyes to his bright, beautiful world. Counting our blessings everyday! — The Sipe Family

GEORGE

THE CHILD WE PRAYED FOR

o, this is not a story about my dog, remote control or Lazy-Boy chair. It’s about my 3-year-old son George who has Down syndrome. It would have been impossible three years ago to imagine how incredibly lucky I am to have George as my son and how thankful I am for the privilege it is to be his father. Our initial response to the news from the hospital pediatrician was disbelief, fear and sadness. Our son had Down syndrome. After a twohour cry, my wife and I composed ourselves and began to read stories like this from other parents. Recently I heard about a father

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whose 2-year-old daughter has Down syndrome. He learned that his wife is pregnant with a son and announced, “Unfortunately, he does not have Down syndrome.” Some of the blessings I have received from George are: • I love to teach my son; even the simplest activities are so rewarding. • He has taught me patience. • He is always beaming with joy, and he greets me every night when I come home from work with a big hug and back pats. • He loves to sit near me, just to be around. • He’s always up for wrestling, ball throwing, sliding, running around the house and playing hide and seek. • Has taught me unconditional love and I appreciate my other children even more. George is affectionate. Compassionate. Kind. Happy. Curious. Determined. Tough as nails. Social. Funny. I am convinced that we should call Down syndrome “Up syndrome” because everything about the personalities of people with Down syndrome brings people up, up to a higher level of love, understanding, patience and joy. George’s life has enriched me as a person and has impacted our entire family for the better. My wife has learned that all of our children have special needs — George’s are just different. Ironically, his older sister has a congenital heart defect. He really is the child we prayed for; he just wasn’t the image we expected. I hope you don’t have to wait until you’re on your death bed to realize what life is really about, and that you will celebrate the opportunity you WWW.TDSN.ORG

now have, gifted by your special son or daughter, to live an extraordinary life.

He includes everyone; he is very sensitive to everyone’s needs and has to make sure Mom and Dad hug often. He seems to know when we especially need it the most.

— Gabriel

MATTHEW

This child is a wonderful teacher! Matthew has taught me to open my intuition and listen to my heart and mind. Because his speech is delayed, we must tap our underdeveloped wordless communication. And yes, we communicate quite well with Matthew. We almost always understand Matthew. Matthew has a different way of doing some things, but don’t all children? If we let them explore, they do. Thank you, Matthew, for being such an inspirational teacher.

ALL ARE UNIQUE, ALL ARE ONE

he immense joy and smiles Matthew brings to us every day are overwhelming. As we travel life’s journey and gain experiences to fulfill our lives, his father and I are closer because of Matthew’s light. But to no surprise, Matthew’s brother has also fulfilled our lives with his journey. We see Matthew as our child. Period. Once in a while, we wonder what will happen in the future— where will he work, where will he live or will he be married. But we ask the same questions of Matthew’s brother. And yes, once in a while we remember Matthew has Down syndrome. We would like to share with you some enlightening insights we’ve learned from Matthew. An Uplifting Message: Place no limitations on your child. Allow your child every opportunity to grow and develop to his fullest potential and being. Matthew’s cardiologist Dr. Walker Long at UNC Children’s Hospital spoke these words to us when Matthew was born. These statements always stay with us. There are many limiting and hopeless opinions from doctors and others, but the attitude from Matthew’s doctors at UNC lifted us and gave us the positive energy we were searching for. Since then, we always seem to find others who continue to offer us supportive, positive energy. What Do I Do First? First, enjoy your baby! Do only a few things right now so you can settle in, enjoy your baby and create a special family bond.

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Matthew

Follow any immediate medical concerns like heart, feeding or digestion. Contact Early Intervention (ECI) in your county for infant specialist services. Contact the Comprehensive Chromosome Clinic at Duke Medical Center. They are knowledgeable on all the specific needs for Down syndrome children. Read at least one positive book on Down syndrome — it is easy to get lost with all the information out there. You’ll have time to dive into the information later. Matthew is a teacher: Tomorrow, Matthew will have a party for his third birthday. Matthew plays, likes ice cream and pizza and loves birthday parties. Matthew has friends, plays in Gymboree and sings and dances in Kindermusik. He loves Dad’s motorcycle and horses. Matthew learns a little slower than other children his age, but he learns.

I am a pioneer: Did I ask to be a pioneer? I don’t know, but I am one. Matthew was born and I realized this. I am always a pioneer; we are all pioneers. I am here to make positive, joyful change. Oneness: The trees are one, but each is unique. Large trees, short trees, straight, bent, many leaves, few leaves. All are unique, all are one. Each one is a part of the whole forest. Home to frogs, bats, birds and squirrels. In all trees they play, feed, birth and sleep. Life flows through all trees, not more or less with each tree. The Oneness. The children are one, but each is unique. Brown hair, blond hair. Some can walk, some cannot walk. Some have blue eyes, some have slanted eyes. All are unique and all are one. Each one of is us a part of the whole humankind. Homes to Life, Love, Joy and Play. Life flows through all children and all people, not more or less with us. We are one. — Maria

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MARY EVELYN FINDING A BLESSING

eople usually care passionately about things that have happened or affect them personally. Sometimes blessings are hard to realize at first. They can be disguised as a burden, but as time passes and people learn more, it’s hard to imagine your life without what was originally thought of as a hardship. I thought some things only happened to other people, other families, but then it happened in my family. While it took some learning and acceptance, my life was changed in a positive way because of it. My redheaded sister, Mary Evelyn, was born at “The Women’s Birth and Wellness Center” in Chapel Hill, and I remember being so excited when my grandpa came and picked my siblings and me up from school and brought us to us to the birth center. Everyone was holding Mary Evelyn, taking pictures and laughing. I loved holding her because she was so small, soft and fragile. Everything seemed to be fine, but I was soon to learn that it was not. I got worried when my dad called my two older sisters and me outside to talk to him. He told us that Mary Evelyn had been born with Down syndrome. I had no idea what he was talking about. “What’s that?” I remember asking. My dad tried to explain quickly that it was a disability that some people were born with, and that she might have to have heart surgery. He had to speak fast because an ambulance was called to take her and my mom to UNC Hospitals. My parents didn’t want my little brothers and sisters there when the ambulance WWW.TDSN.ORG

Moira and Mary Evelyn

came, so we had to leave right away. I sat in the car not knowing what I was supposed to be feeling. Happy that I had a new baby sister? Or sad because she had this Down syndrome thing? Both? I looked in the rearview mirror and saw tears running down my older sister’s face. That night I couldn’t sleep. How could my sister have been born with a disability? I knew that many families had disabled people in them, but I had never considered someone in my own family being disabled. The next day was much better because my dad was able to explain about Down syndrome in more detail. He said that people who have it usually take a longer time to learn things and may have to go to physical, speech and occupational therapists. He also said that like half of all people born with Down syndrome, Mary Evelyn had heart problems and would need heart surgery. I have to say that scared me.

Even though all of this was a total shock to me, I felt better because I was starting to understand what was going on. The whole experience didn’t feel real, it felt more like a dream than my life. As time went on, I began to learn less about the science of Down syndrome, and more about the people who have it. My mom showed us all of these different articles and stories that people wrote about their children, brothers, sisters, aunts, uncles and cousins all who have Down syndrome. They talked about the way they felt when they found out and how their life has changed because of it. But they spoke the most about the people that have the disability, and how loving, fun and caring they are. I then began to learn that what they said was true, through my own experiences with my sister. — Moira

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FAMILY PERSPECTIVES | SIBLINGS God and I wouldn’t do anything to change him. He has given me so much insight and inspiration for my future career.

LANEY

A BROTHER’S LOVE

y little sister Laney has Down syndrome. But I still love her. I am her big brother Garrett, and I am 10 years old.

— Ashley

MATT

NOTHING IS IMPOSSIBLE

Most of my friends have little sisters and brothers and most are younger than Laney. They mostly ask why can’t she talk clearly like my little sister or brother? So then I have to tell them that Laney has Down syndrome and she learns slower. But I also tell them she can do everything their little siblings can do. I love to go to her gymnastics class. She loves it, too. I don’t care if she has Down syndrome. I love Laney so much! — Garrett

MARKUS

OUR BLESSING FROM GOD

y name is Ashley and I’ve just graduated from Leesville Road High School. I will be attending East Carolina in the fall with plans to pursue a career in allied health services. Mark Brooks is my 3 1/2-year-old brother. When he was born he was diagnosed with Down syndrome. I was a little apprehensive about how much my family’s life was going to change. Life was a whole new world when we brought him home. My eyes were opened to many different procedures, systems and schedules. I had been an only child up to this point. As Mark has grown older, he has established 54

t’s hard to know where to begin when talking about Matt. He’s my brother, my big brother and he will always remind you of that if you meet him. I know I’m partial, but Matt is the greatest brother and inspiration that I’ve ever met.

Laney and Garrett

a unique role in our family. He is always so happy, unless he is hungry or tired. If one of us is having a hard day, he’ll quickly give hugs and kisses. He is filled with a lot of love. A student in my child development class asked me if I wished Mark had been a “normal” sibling. I told her absolutely not. Mark is wonderful, and he always brightens up my day. He gets so excited when I come into the room. When he learns something new it is an accomplished task — not just an everyday event. Mark has made all of our lives different, and he makes us realize how much we take life for granted. In our family we refer to him as our “Blessing From God.” I actually call him “Gerber Baby” or “Markus” and he calls me “Sissy.” He is his own person and is such a strong individual. I love having him around to play with. He always makes me smile. Mark is a true blessing from

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There was never a time that he didn’t think he could do something, and really never a time in his own way he hasn’t succeeded. He graduated high school with me where he was voted “Most School Spirit.” He’s an Eagle Scout, held a job with the city for 10 years and has been a volunteer fireman for the last 15. Matt is truly amazing, but it’s not all the things that he’s done or even that he’s done them all with what the world would call a “disability,” it’s the way he sees the world and teaches by “being,” that makes him the greatest brother in the world. I’ve seen Matt in many situations be the ultimate center of peace. He’s walked into times of sorrow and times of fear and calmed them all. There is one Matt story that for me epitomizes his spirit. It was a snowy February in rural West Virginia when my mother was in a severe traffic accident. She walked away with broken bones, a black and blue face and a painful neck injury. Matt and I were both kids and I remember it really scared me to see her. Not Matt, he was there, holding her hand telling her WWW.TDSN.ORG

“it would be OK.” She was hurt very badly. I’ve seen this before with Matt, but it’s like he was hurting too and you couldn’t pull him away. He wanted to do something and told her he wanted to get her flowers. I told him it was February and there was snow on the ground. Mom told him not to go outside, it was freezing. She cried into her bandaged hands as Matt bundled himself up and trudged out and began to dig in the snow where the spring flower beds usually were. Mom prepared herself to soothe a sad Matthew, telling him it was okay and that she loved him for trying.

Matt and Maari

Matt appeared in her bedroom doorway with his red cheeks and running nose, his pink hands cupped. Just as mom was about to start with the soothing Matt opened his fingers revealing a perfect frozen pink rose bud. My mother was astonished and started to cry. Matt said, “don’t worry mom it’s okay. I’ll get some water to thaw it out.”

for 10 years and has been a volunteer fireman for the last 15. Matt is truly amazing, but it’s not all the things that he’s done or even that he’s done them all with what the world would call a “disability,” it’s the way he sees the world and teaches by “being,” that makes him the greatest brother in the world.

That is my brother Matt, nothing is impossible and what we deem impossible is possible to him. I think sometimes that I really am the “disabled” one. I see impossibilities where Matt sees a limitless world. Like I told you, the greatest brother ever. It’s hard to know where to begin when talking about Matt. He’s my brother, my big brother and he will always remind you of that if you meet him. I know I’m partial, but Matt is the greatest brother and inspiration that I’ve ever met. There was never a time that he didn’t think he could do something, and really never a time in his own way he hasn’t succeeded. He graduated high school with me in ‘98 where he was voted “Most School Spirit.” He’s an Eagle Scout, held a job with the city WWW.TDSN.ORG

I’ve seen Matt in many situations be the ultimate center of peace. He’s walked into times of sorrow and times of fear and calmed them all. There is one Matt story that for me epitomizes his spirit. It was a snowy February in rural West Virginia when my mother was in a severe traffic accident. She walked away with broken bones, a black and blue face and a painful neck injury. Matt and I were both kids and I remember it really scared me to see her. Not Matt, he was there, holding her hand telling her “it would be okay.” She was hurt very badly. I’ve seen this before with Matt, but it’s like he was hurting too and you couldn’t pull him away. He wanted to do something and told her he wanted to get her

flowers. I told him it was February and there was snow on the ground. Mom told him not to go outside, it was freezing. She cried into her bandaged hands as Matt bundled himself up and trudged out and began to dig in the snow where the spring flower beds usually were. Mom prepared herself to soothe a sad Matthew, telling him it was okay and that she loved him for trying. Matt appeared in her bedroom doorway with his red cheeks and running nose, his pink hands cupped. Just as mom was about to start with the soothing Matt opened his fingers revealing a perfect frozen pink rose bud. My mother was astonished and started to cry. Matt said, “Don’t worry mom it’s OK. I’ll get some water to thaw it out.” That is my brother Matt, nothing is impossible and what we deem impossible is possible to him. I think sometimes that I really am the “disabled” one. I see impossibilities where Matt sees a limitless world. Like I told you, the greatest brother ever. — Maari NEW PARENT HANDBOOK

FAMILY PERSPECTIVES | FIRST-PERSON

ALYSSA

is Jars of Clay. I like the songs because they have great words, especially “Overjoyed.”

My hobbies are singing, swinging on the play set, theater, dance, writing, riding my scooter, and going to concerts. I love to listen to music and sing along. I like the bands of Rachel Lampa, Jars of Clay and Jennifer Knapp. I went to a Jars of Clay and Jennifer Knapp concert for my birthday. I would like to be in a concert with Jars of Clay.

MY FAMILY, MY FRIENDS y name is Alyssa. I am 13 years old and I was born in New Hampshire. My family moved to Hershey, Pa., then to Raleigh. I live with my parents and my brother. My family is wonderful. My mother is my teacher and is a great cook. She is a good singer too. My father works at SSE. He is a good fixer — he can fix anything! My brother’s name is Stuart. He plays soccer and t-ball. We have three pets. Our dog’s name is Cocoa. She is a mixed black Labrador. Our hamster’s name is Maggie. We got her when she was a baby. Our cat’s name is Piper. My mother got her before I was born. I am home schooled. In the morning, I get dressed, brush my teeth and have my breakfast. Then I go upstairs to our school room to do my school work. In language arts I learn about the eight parts of speech, write paragraphs, learn vocabulary, and read. I’m doing multiplication in math. In gym I play baseball and other games. In science I learn about God’s creation. I also go to a learning co-op. This year I studied sign language, anatomy, Shakespeare, and poetry. We have our own piano, and I like to play it. I just started lessons from my mother. I can play Old Macdonald, Jolly Old Saint Nicholas, and the Echo Song.

I have taken Modern Dance for four years. There are lots of exercises and dances. It’s a good workout. I like to dance for Jesus. Maybe next year I will take jazz! Another hobby is watching “America’s Funniest Home Videos” on television. I watch it with my family on Sundays. We always laugh together. I have been in three big plays and had tons of lines to memorize. In the play “The Empress’ New Clothes,” I was Angelica. In “Cinderella,” I was a townschild. In “The Princess and the Pea,” I was Princess Temporal. I hope we do “Sleeping Beauty” or “Little Women” next year. When I grow-up I want to be a singer, writer or actress. I also want to sponsor a child from Africa. My friends are Amy and Crystal and Rachel. I like them. We always play together. We like to talk, write stories and dress up. They understand me.

My favorite foods are spaghetti, tacos and rolls. My favorite subjects are reading, writing, and singing. My favorite books are The American Adventure series. My favorite group 56

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MITCHELL

A BUSY, BUSY LIFE

y name is Mitchell Akin, I am 26 years old and I have Down syndrome. I live with my parents in Raleigh. I have one older brother, Brad, who is in graduate school at Northwestern University in Chicago. Brad and I were born in Chicago and we moved to Raleigh when I was six years old. I graduated from Leesville Road High School in 2005. I do a lot of exciting and fun activities. I am a board member for the Triangle Down Syndrome Network. I go to Wake Tech two days a week. I work part-time at Target and IMAX. I volunteer at the YMCA. I am a member of S.T.A.R, Special Theatre Arts of Raleigh. We have performed several plays in the past 10 years, including “Grease,” “Cinderella” and “The Wizard of Oz.” I do swimming, track, bocce and bowling in Special Olympics and I have won many medals. My favorite things to do are hanging out with my friends and watching movies. I bowl every week with a group of my friends and then we all go out to eat. My best friend, Peter, and I have been friends since I was six years old. We still love to hang out together. — by Mitchell

— by Alyssa Sue

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FAMILY PERSPECTIVES | GRANDPARENTS

JOSI

PRAYERS GOT HER THROUGH This article originally appeared nationally in Down Syndrome News in April 1999

ur daughter Kristin and her husband Jim presented us with our fifth grandchild on February 11, 1998. Her name is Josephine (Josi) Berkley. As a family we have been blessed with her arrival, and we give thanks continually for her good health, her lovely, happy personality and her steady growth and development. Jim and Kristin have a 2-year-old son named Allen, so when Kristin became pregnant, we all hoped for a little girl. Our wishes came true. Kristin’s obstetrician suggested she have an ultrasound done in her fourth or fifth month. It was at that time that Jim and Kristin were told they were expecting a baby girl— with Down syndrome. We grieved and reached out for each other as a family. Kristin and Jim’s doctor asked them, “What do you want to do about it?” Without hesitation they said they would bring their baby to full term. The next step in all of our lives was information gathering. Kristin and Jim live in Raleigh, North Carolina, and we live in Wyomissing, Pennsylvania. They turned to the Internet and found the NDSC. I called Kristin’s pediatrician, a good friend of our family’s, Dr. Peter Muhlenberg, and he told me about our local Arc. They contacted the NDSC for us and we received a packet of information. The same packet was sent to our WWW.TDSN.ORG

daughter and son-in-law. We read everything we could get our hands on. Our local hospital set up a time for my husband and me to view a wonderful, local video geared toward grandparents of children with Down syndrome. Kristin and Jim began putting services into place prior to Josi’s birth.

We attribute Josi’s miraculous growth and development to the many constant prayers for her. I cannot describe how wonderful it feels just holding and watching her!

Josi was born two months premature because she was not eliminating the amniotic fluid. Kristin had to have a Cesarean section at the University of North Carolina Hospital.

WATCHING HER GROW

There were complications when Josi was born and she was on life support for two weeks. All us relatives visited Josi, talked with her and sang to her. Every timethey took her off the respirator during those first two weeks she couldn’t breathe on her own. People from all over the country were praying for her when our dear little Josi started breathing on her own. The doctors had to insert needles to remove all the fluid in her lungs. Though born two months premature, Josi was a large baby. Not too long after that they removed the feeding tube. After many trials and against the odds, Josi began to breastfeed. When she was born, the doctors told Jim and Kristin not to get their hopes up with regard to Josi’s homecoming. They predicted she “might” be ready to go home on her own on her “real” birth date in the middle of April, but she was home three weeks after her birth. Thankfully, Josi’s heart, digestive system and bowels checked out normally. She had leukemia blood levels, which had to be monitored regularly, but her blood work continues to indicate normal levels.

— by Stella Jo Paul

EMILY

y daughter Julie asked me to write a letter to go in the TDSN Parent Book. She suggested I write it from a Nana point-of-view since I’m the Nana. So here goes. Having a granddaughter with Down syndrome has been a blessing in that it has given me time. Since I did not live in the Triangle area when Emily was born, I was afraid I would miss so much of the early development of my grandchild. I wanted to watch her grow and change, but I couldn’t see her everyday. Down syndrome means the child progresses slower than a typical child, so if I couldn’t be with Emily every day, I didn’t feel I was missing much. I’ve been able to watch her learn to roll over, sit up, crawl and walk. After Emily was born, my husband and I decided to move to the Triangle to be close enough to help whenever needed, and to be able to see our grandchild more often. We’ve had so much fun being able to go out to dinner together where I love feeding Emily. Of course now she doesn’t need me quite so much since she’s learning to feed herself, but we still have fun together. I’ve always enjoyed shopping trips with my daughter so now it’s even NEW PARENT HANDBOOK

FAMILY PERSPECTIVES | GRANDPARENTS

more fun to go shopping with my granddaughter too. Obviously she’s learning that Nana will buy her things — especially ice cream. (But it’s really because Nana loves ice cream too.) Emily loves the mall. She sits up in her stroller and waves to everyone. Her face lights up into such a beautiful smile that she can melt the hearts of total strangers. Everyone says she is such a beautiful child, but they don’t need to tell me. I know it! She’s beautiful from the inside out. I could never have asked for a more beautiful grandchild. She’s the blessing I never expected. — by Pam

GEORGE

MY FAVORITE GRANDSON

mpossible, I thought, when I heard my new adorable 5-pound, 4-weeks-early grandson had Down syndrome. I had just been with this beautiful little boy and he was perfect! Yes, he is perfect and the absolute light of my life. Now 3-and-ahalf years later, I can’t imagine my life without him. The rest of my grandchildren (10 of them) tease me that George is my favorite! I don’t put up much of an argument on this subject but only say he is very special to me. My time with him is so joyful and so much fun. He is the sweetest, most

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affectionate little guy. I love him and thank God for him as he has brought so much love into my life and to the rest of my extended family. My compassion and patience has increased so very much because of him. He is with us for a reason and I cherish that thought. — George’s very proud grandmother, Victoria

CAROLINE GRACE

MY LITTLE PUNK ROCKER

ur precious angel, Caroline Grace arrived on the day before Thanksgiving.

Upon seeing her for the first time, she looked just perfect. All fingers WWW.TDSN.ORG

and toes there, color was good, the most beautiful deep blue eyes you ever did see and a little tuft of red hair that seemed to be moussed up in the punk rock style. I think I called her my little red headed punk rocker. She was so adorable and we were so proud to have her. She is our first grandchild and a true joy to our family. Caroline had heart surgery for a major defect at three months of age and her recovery was just amazing. My husband and I were at the hospital with her and he was singing to her as he often does, when she looked up and gave a small smile in his direction. We felt such relief and knew that she was going to be okay. She recovered nicely and continues to do well. We are all so excited at each feat she is able to accomplish, but realize that there are many hurdles in her way and will just have to be there to help her over them. We thank God daily for our little darling and pray that she can have a good, long life with lots of love. She truly is our little bundle of joy. Upon learning of the heart defect and Down syndrome, I really don’t know how to describe my feelings of concern for everyone and the grief that seemed to consume me for a short while. I believe it was much like being told that you have a terminal illness and the stages that one suffers through finally being able to accept the diagnosis. Denial is the first one. “There has been a mistake and everything will be okay” you say to yourself. Anger sometimes is next, followed with bargaining, depression, and finally acceptance. I progressed through them quickly WWW.TDSN.ORG

and realized that “it was okay.” She would have lots of love and I’m sure that she was given to the only family who could love her as much as we do for just as long as we have each other. We had to realize as parents and grandparents that this is one thing that can’t be fixed. No amount of money, kisses, medicine, or band-aids can make that extra chromosome and repercussions from it disappear. We are so thankful that her parents are strong and will insist that she be afforded every opportunity that is available and perhaps see to it that even more become a reality. Remember the old saying, “it’s the squeaky wheel that gets the oil.” Don’t be afraid to challenge those teachers or doctors. No one knows your child better than you! — Caroline’s Gam, Dianne

STEVEN

THE BEST IN ALL OF US When our daughter Susan was pregnant in 1997, it was a long nine months. After some ultrasound testing, doctors suspected something was wrong with the baby. We worried and prayed, and prayed and worried. Steven was born on Oct. 11, and Sue and Mike were told there was a possibility that their child had Down syndrome. We had to wait several days for the diagnosis to be confirmed, but confirmed it was. I can still see Susan that day, carrying this beautiful baby into the house with Mike beside her, both of them having received the news. With broken hearts we all cried. Mike advised us to grieve for 30 minutes, and then to move forward.

Sue’s main concern was for Steven’s happiness; would he have a happy life My concern was for my beautiful daughter. Why couldn’t I have had to raise a child with Down syndrome instead of her? Would Susan and Mike have happy lives? We have all come a long way since that day. This child of wonder and delight has brought all of us great happiness and moments of joy. Each step in his development has been marveled at and appreciated. When he could hold his little head up unaided, when he finally sat up alone, when he rolled over, crawled, and now that he’s standing and walking around the coffee table. They are all major events. All of the routine things that happen with other children are small miracles for us. We have come to appreciate and marvel and thank God for each and every step in our little Steven’s progress. To see his beautiful face light up with joy as he communicates with us using sign language is surely a moment with an angel; the joy is so pure. The gift that Steven is to our family is something unasked for and at first unappreciated. Now that he has been with us for two years, we don’t know how we could ever do without him. He brings out the best in all of us. Among other things, Steven is teaching us patience and an infinite appreciation for the development of a child. News of each milestone is spread around the family and received with delight and gratitude for his progress. God has blessed us with a special child, and that child is teaching us life lessons we never would have known without our precious gift. — Steven’s Grandma NEW PARENT HANDBOOK

HEALTH & FINANCES

TRIANGLE DOWN SYNDROME NETWORK

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ecause Down syndrome is so common, nearly every family physician provides medical care to at least one family with an affected child. The care of the infant or young child with Down syndrome can be complicated and may involve a myriad of immediate and long-term medical problems and psychosocial issues. Routine health maintenance is important because infants and children with Down syndrome are more likely to have otitis media, thyroid disease, congenital cataracts, leukemoid reactions, dental problems and feeding difficulties. WWW.TDSN.ORG

NEW PARENT HANDBOOK

earning to eat foods, from the first bites of baby cereal to regular table foods is a long process. For children with Down syndrome, learning to coordinate tongue and mouth movements from the first bites of baby cereal to eating table foods takes longer and can cause parents concern. It helps to understand the developmental stages and skills children must go through learning to chew. This article discusses what chewing skills to look for before changing the texture of food and how to encourage and teach your child with Down syndrome to chew different foods. With this information you can sit back and enjoy the fun and messiness of discovering foods together with their child. There is little information available to parents explaining what to look for when introducing new food textures to children with Down syndrome. Most information is 62

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written for children without disabilities and presents the introduction of different food textures as an age-related table. The ages for different types of foods (strained baby food, pureed, ground, chopped foods) reflect the typical age that certain tongue and jaw movements develop. Some children with Down syndrome will follow these tables and have little trouble with the introduction of foods, or chewing. Others will experience delays because of lower muscle tone or a smaller mouth cavity. Understanding chewing development and the key tongue and jaw movements that signal readiness for a new food texture such as going from strained, pureed foods to thickened, pureed foods is essential to the process (table 1, next page). Before your baby is offered her first bite from a spoon, she is getting her food through breast-feeding or from a bottle. The mechanism for swallowing during that time is called, suckling, which is combination of extension and retraction of the tongue, forward and backward jaw WWW.TDSN.ORG

Down SyndromeSolutions and Breastfeeding Information Technology There is no question that all babies benefit from human milk and the experience of breastfeeding.

F e e di n g P r o bl e m s When addressed early, feeding problems in children with Down syndrome can be easier to manage .

B r e a s t F e e d i ng Infants with Down syndrome may have more difficulty with breast feeding. When given the right training and support, breast feeding is possible .

Infants with Down syndrome can breastfeed. They just may have more difficulties breastfeeding. Detecting possible problems quickly and providing specialized therapy can significantly increase a baby’s success.

Breastfeeding benefits particular to a baby with Down syndrome: Immune system: Human milk has immune protection properties that can help protect against infection. Babies with Down syndrome tend to have increased respiratory, viral and ear infections. The action of the tongue, lips and jaw used during breastfeeding can increase muscle strength and help ensure that these muscles are used correctly for feeding and speech development.

To ng u e Pro t ru s io n We use specialized therapy techniques that can reduce common tongue protrusion patterns noticed at rest and during feeding. Our exercises can minimize or eliminate the tongue protrusion patterns that are often seen in children with Down syndrome.

Feeding Difficulties 

Coughing and choking

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Aspiration (down the wrong tube)

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Vomiting milk through nose

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Tires before finishing feeding

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Poor sucking patterns

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Difficulty latching

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Tongue protrusion

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Limited milk transfer

Potential Problems 

Low muscle tone

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Tongue thrust

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Respiratory problems

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Heart issues

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GI issues

Helpful Ideas: CPD Ca n H e lp With over 17 years of feeding expertise, we have helped children and their families work through even the most difficult feeding challenges.

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Provide supportive positioning by swaddling or providing support to your baby’s head, neck and upper back. Calm surroundings help with organization and can reduce fatigue or sleepiness. Classical music can also help organize a baby during feeding. Make sure that all feedings are enjoyable.

At CPD we can help make breastfeeding not only possible, but enjoyable for you and your baby. If your baby is having difficulty breastfeeding, we are here to help. We are in-network with most insurances. Contact Carolina Pediatric Dysphagia to obtain more information or to make an appointment 3714 Benson Drive, Raleigh, NC 27609 (919-877-9800) www.feeding.com

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NEW PARENT HANDBOOK Check out our blog: http://www.trianglemom2mom.com/features/ask/

CHEWING DEVELOPMENT WITH SUGGESTED FOOD TEXTURES

movements, and a loose closure, or connection, of the lips around the nipple. Throughout those first months of breast or bottle feeding, your baby builds strength in her tongue and mouth and a new pattern begins to emerge which Is called sucking. Sucking includes a more rhythmic up and down jaw movement, an elevation of the tip of the tongue, and a firm closure of the lips around the nipple, which creates a negative pressure in your baby’s mouth. It is usually shortly after this sucking period begins that the first bites of baby food are introduced, commonly between four and 6 months of age. That first bite of baby cereal is a big event for everyone involved. Not only is it a new developmental stage, but it is a change in the relationship between your baby and everyone around her. Eating requires more participation and interaction from her. Those who feed her will learn to listen to her cues regarding how fast or slow to present each bite.

TRIANGLE DOWN SYNDROME NETWORK

In these early interactions the groundwork is laid for other give-and-take situations. It is a natural time for parent and child to develop an awareness of overall body tone, stamina, and to develop a feeling of mutual trust and respect. Those first bites of baby cereal are also very messy. Generally babies will lose a certain amount of the cereal as they try to coordinate their tongue and jaw movements to this new, foreign food. Babies with Down syndrome often lose more food than those without Down syndrome as they coordinate these movements. If too much food is lost, your baby’s jaw movements may still be more of a suckling pattern — tongue and jaw thrusts resulting in loss of food — than a sucking pattern. A good rule of thumb to use is if your baby with Down syndrome seems to be losing 75 percent or more of the food from each bite, it might be best to wait a few days and try a bite of cereal again. Once she is eating baby cereal successfully, follow the typical pattern for

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introducing first baby foods. This category of foods is called, strained, pureed foods which includes baby cereals; jarred, strained baby foods; and homemade, pureed, strained foods.

gagging after most bites of food, check with your doctor or speech pathologist to make sure she is swallowing safely. As your baby gets accustomed to strained, pureed foods, she will begin to develop a strong sucking action.

If your baby continues to lose a lot of food with each bite due to jaw and tongue thrusts, there are some things you can do to help her learn to control her mouth and tongue while eating:

Once your baby is proficient with strained, pureed foods, which you can tell by the stronger sucking action, it is time to begin thickening her foods. While eating these thickened, pureed foods your child learns to use her tongue to move food in her mouth. To thicken foods, add instant potato flakes, wheat germ, bread crumbs, or dry baby cereals. Using wheat germ to thicken foods is also an excellent way to increase fiber. When you thicken strained, pureed foods, there are a few things to remember:

• Check your child’s positioning. The best position is as near a sitting position as possible, with her legs, head, back, and feet supported as needed. • Your baby should be able to look straight ahead at you or the person feeding her during her mealtime. Looking up to see the person feeding her causes her to lift her head back and makes swallowing more difficult. • Spoons full of food should be small. Too much food makes the process more tiring and frustrating for both of you. It’s easier to move a small amount of food around in her mouth than a large one. • Present the spoon from slightly below your baby’s mouth. As she accepts the spoon, place the bowl of the spoon firmly (but do not push hard) on the centerfront of her tongue. This helps her keep her jaw and tongue from thrusting forward. • Remove the spoon straight out of her mouth (don’t lift the spoon to scrape food off). This will encourage her to use her lips to close around the spoon to get the food. • Watch your baby’s cues. Learning to handle food is not easy. Wait for her to completely finish her bite before offering her another. It may take her extra time to coordinate her movements between bites Watch for her receptiveness for each bite rather than providing the spoonful of food before she is ready. • Watch for signs of fatigue. Tiring early in a meal is very common for children with Down syndrome, particular in the beginning stages of eating. Try not to push her past her limit to frustration. If she tires too early to get enough calories, consider more frequent meals for her (6-8 times in a day). Focus on increasing the length of each meal until one or more can be eliminated from the daily schedule without sacrificing calories.

Give yourself and your baby some time together at this stage. It takes practice to develop a rhythm you are both comfortable with. Some children will have tongue thrusting movements and continue to lose food as they eat. If she is eating her foods without coughing or gagging, then she has most likely found a way to adapt her tongue movements. If she is coughing, gasping, gulping, or WWW.TDSN.ORG

• Foods will continue to thicken after you are done mixing. Check the consistency of the food every three bites or so. You may need to add some liquid so it doesn’t become too pasty. • Use a thickener (baby cereal, potato flakes, and so on) that makes sense for the food you are thickening. Strained pears with potato flakes have a funny flavor. Rice cereal might be a better choice because it has a less distinctive flavor.

During this stage (thickened, pureed foods), your child will develop what is called a phasic bite reflex which is a rhythmic bite and release pattern that looks like she is opening and closing her mouth when something touches her gums (a toy, a spoon, some baby food, or your finger). This is a good time to let her explore with a spoon or an empty cup. Although this stage does not signal time to change your child’s food texture, it is an important step to being able to accept different textures. Allowing her to chew on things such as wash cloths and toothbrushes help her get used to the feeling of different textures in her mouth. This is helpful later when she is trying out new and different foods. The next chewing stage to look for is munching, which is when your child moves food in her mouth by flattening and spreading her tongue while moving her jaw up and down. For some children with Down syndrome, this may look something like a flattening on the roof of the mouth followed by a pushing outward of the tongue to move the food as she opens her mouth. When you see she is beginning to munch, it is time to introduce some finely ground foods, such as cooked, mashed vegetables; scrambled eggs, or cottage cheese. This is your child’s first experience with texture in her food. She may be surprised or react strongly. Be prepared for a lot of messes. If she rejects a food (throws it, spits it out, smears NEW PARENT HANDBOOK

it all over), don’t take it personally. Offer a small amount again in a few days. Eventually the food will make it to her mouth. It is not uncommon for children with Down syndrome to continue to struggle with low oral motor tone at this stage. Some children may find ways to move foods with their tongue that is slightly different from what is considered “typical.” Again, if your child is choking, gasping, or gagging a lot, ask for help from your doctor or speech pathologist. If, however, she is handling foods without choking or gagging, but is having trouble coordinating her chewing or tongue, here are some things you can do to help encourage her eating skills: • During a meal, sit directly in front of your child. Place your thumb on her chin bellow her lower lip. Your index finger will be back by the joint of her jawbone and your middle finger under her jaw behind her chin. Gently encourage her jaw movements in an up and down action. Do not force this movement. If she protests and asks you to remove your hand, it’s best to respect her wishes. • Place food (scrambled eggs and small graham cracker pieces are good) between her gums or molars on one side of her mouth. This encourages her tongue to get the food • If your child seems to prefer to chew on one side of her mouth, place food on the other side. This works especially well if it is a favorite food. • Offer toasted bread strips, strips of soft cheese, and other appropriate finger foods (see table 2). It is safest to hold on to one end of the food as she chews so she doesn’t get too much at once. • Do not mix food textures! Foods that have more than one type of texture such as spagettio’s , most junior foods (spaghetti with meatballs) or lumpy ground foods, require different chewing movements. It is confusing to your child to have more than one texture to deal with at a time in a bite of food. • To encourage her to move her tongue from side-to-side (a skill needed for rotary chewing), offer ice cream cones to lick or place small dabs of smooth peanut butter in the corners of her mouth to lick off.

When your child is able to move foods from side-to-side with her tongue, it is time to introduce finely chopped foods. Use foods from the family meal that you chop very small. It’s best to begin with foods that are easy to chew, such as chopped pasta, cooked vegetables, cooked potatoes (without the skin), or canned or very ripe fruits. Let her 66

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watch you remove her food from serving dishes so she sees it is the same as what the rest of the family is eating. This usually makes these new foods particularly interesting to experiment with and eventually eat. As she becomes comfortable with finely chopped foods, gradually increase the size of her foods to bite-sized pieces. During this time, your child will slowly work toward a mature rotary chew, which uses the tongue to move food from side-to-side in the mouth along with a coordinated movement of the jaw in vertical, lateral (side-to-side) and diagonal movements. A mature rotary chew looks like a smooth, circular motion while the jaw opens and closes to chew. For many children, with and without Down syndrome, this is easy to observe because it is difficult to do with their lips together, eliciting the familiar comment, “chew with your mouth closed!” For children with Down syndrome, it is quite helpful to understand what your child is learning to do as you introduce new food textures. Rather than using age to decide when to introduce a new texture, watch your child eat and look for the skills she needs to progress. It takes children with Down syndrome longer to chew their food, which continues for many years or may be life long. This could be because of low oral motor tone, motor planning (coordinating the movements to do the WWW.TDSN.ORG

chewing), or from general fatigue from the work of eating. Regardless of the reason, it is something to keep in mind at meal times, particularly as you help her learn to eat. It may also be something to consider at day care, preschool, and as your child enters school; she may need more time for to eat her lunch and snacks. Learning to eat foods and progress through textures is more than developing chewing and swallowing skills. Though these skills are necessary to successfully eat regular table foods, there are many things that must be considered beyond chewing for your child to be able to eat well, including what goes on during the family meal. As with most things, there will be times of frustration along with joy in accomplishments. Sometimes, in the middle of the frustrations we feel coupled with day-to-day living, it is hard to remain positive. When you are feeling frustrated, here are some things to remember that may be helpful: • Learning to eat is a messy, messy process. This can be the hardest to remember.However, a lot of learning takes place in the midst of the mess. While exploring food, children learn about the feel, smell, and temperature of foods (and sometimes the sound as they plunge to the floor). • Children with Down syndrome often take longer to progress from baby food toregular table foods. However, that doesn’t mean you have to forfeit table manners. Your child is learning about table manners from everyone around her. It’s a great time to remind others to eat politely and to encourage the same, whe appropriate, for your child with Down syndrome. • Try to make mealtime pleasant. Learning to eat, use utensils, and try new foods is a lot to do. Children with Down syndrome may become overwhelmed if too much is going on around them during meal time. Try to limit the amount of extra activity where your child is eating or at your family table by turning off the television radio, video games, and so on. • Remember your child is always growing. The seating position that is best for your child will change as she grows. It is most important to consider upper body support and a place to rest her feet so her knees are at a 90-degree angle. These two things will affect her ability to feed herself as well as her ability to chew and swallow safely. If she has to add the work of supporting her upper body or her legs while eating, she will not want to also work on using her spoon or fork. • Eating takes time for children and adults with Down syndrome. It is worthwhile to allow for extra time whenever possible. Offer new foods one-at-a-time. As your child grows, continue to introduce new foods WWW.TDSN.ORG

along with old favorites. This is good for all family members. Do not force her to try “just a bite”. Instead offer a small amount over the course of many meals. Consider it a side dish. Eventually she’ll give it a try. • Establish a family meal time. It is important for your child to be a part of the family meal. Whenever possible, even as a baby, include her in the family meal time so she can see how others eat and talk with each other. Try to serve foods that are as similar to what the rest of the family is eating (either in color of type of food) as possible.

There are times when despite your best effort, or because of medical complications, your child with Down syndrome may not be moving from baby cereal to table foods in the way you expected. Early Intervention Team members are available to ask questions about feeding your child. Each team usually has a speech pathologist, an occupational therapist, and some will have dietitians all who are familiar with feeding concerns. In some cases, it may be necessary to consult a group of professionals who specialize in feeding concerns. If you are unsure if you need to consult a feeding team, guidelines are available to help you, your Early Intervention Team Members, or your pediatrician decide. Learning to eat is a delightful time for parents and children. It’s a time full of new experiences and creative ways to explore foods, utensils, and the reactions of others Understanding when and why to introduce new foods to children with Down syndrome makes it possible to move forward while you relax and enjoy the messes together. Some foods require caution for any child who is still learning to handle foods in her mouth. If your child has not yet mastered a “mature rotary chew,” only offer the following foods with strict, attentive supervision (or not at all). • • • • • • • • •

Nuts Seeds Popcorn Raisins Hard Candies Raw Carrot Sticks Chips Snack Puffs Hot Dogs

NEW PARENT HANDBOOK

Feeding and swallowing difficulties By Joan D. Comrie Carolina Pediatric Dysphagia Raleigh (919) 877-9800

hildren with Down syndrome often have significant impairments in oral motor function which place them at risk for feeding and swallowing disorders (dysphagia) and nutritional compromise. Children with Down syndrome tend to have similar patterns of oral motor difficulties which in part can be due to macroglossia (large tongue), their underlying hypotonia (low muscle tone), small oral mechanism (mouth), and tongue protrusion. Additionally, children with Down syndrome are predisposed to respiratory, cardiac and gastrointestinal problems. All three of these factors may negatively influence feeding patterns placing children at risk for dysphagia. 68

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There is growing recognition of feeding problems in children with Down syndrome. It has been reported that parents of children with Down syndrome do not spontaneously report difficulties with their childâ&#x20AC;&#x2122;s feeding unless specifically inquired. The purpose of these frequently asked questions is to inform parents of children with down syndrome of the specific feeding and swallowing, complications that their child may experience and ways tofacilitate the development of the oral motor skills necessary for safe feeding as well as speech development. Because my baby is gaining weight no one seems concerned that it takes my baby an hour to feed. Am I wrong to be concerned? Parent gut feelings are usually correct. It should not take your baby longer than 30 minutes to take in her required amount of breast milk or formula. Your baby should be content and not exhausted or frustrated during WWW.TDSN.ORG

Down Syndrome andSolutions Feeding Problems Information Technology

Feeding Problems When addressed early, feeding problems in children with Down syndrome can be easier to manage . Breast Feeding Infants with Down syndrome may have more difficulty with breast feeding. When given the right training and support, breast feeding is possible .

T o ng u e P r o tr u sio n We use specialized therapy techniques that can reduce common tongue protrusion patterns noticed at rest and during feeding. Our exercises can minimize or eliminate the tongue protrusion patterns that are often seen in children with Down syndrome.

Infants and children with Down syndrome often have feeding difficulties that can make feeding challenging. Prompt identification and evaluation of feeding difficulties and potential problems that can interfere with feeding development, enables early management. Early management of feeding difficulties can reduce potential nutritional and medical complications. Our therapists at Carolina Pediatric Dysphagia can teach you and your child specialized feeding techniques based on individual needs. We work closely with you and your child to ensure that your goals are met and that your child obtains adequate nutrition for growth and development. For many children with Down syndrome, feeding therapy is a vital component of early intervention. Our goal is to help your child develop strong oral motor patterns for feeding, speech development and oral and facial development.

Feeding Difficulties 

Coughing and choking

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Aspiration (down the wrong tube)

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Difficulty breastfeeding

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Vomiting milk through nose

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Tires before finishing feeding

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Poor sucking patterns

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Difficulty coordinating breathing and swallowing

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Tongue protrusion

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Chewing difficulties

Potential Problems 

Low muscle tone

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Heart defect

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Respiratory/breathing problems

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Reflux and constipation

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Prematurity

CPD Can Help

With over 17 years of feeding expertise, we have helped children and their families work through even the most difficult feeding challenges.

Whether you need help with breast feeding, spoon feeding, chewing or speech development, we can help. At CPD we work closely with parents to help educate and empower them about their child's feeding or speech development. Our goal is to help your child reach his/her maximum potential. If your child is exhibiting any common feeding difficulties or if you are concerned about your child’s feeding or speech skills, ask your medical provider for a referral. We would be happy to help you and your child reach your goals. We are in-network with most insurances. Contact Carolina Pediatric Dysphagia to obtain more information or to make an appointment 3714 Benson Drive, Raleigh, NC 27609 (919-877-9800) www.feeding.com

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Check out our blog: http://www.trianglemom2mom.com/features/ask/ NEW PARENT HANDBOOK

or after feeding. Because sucking and swallowing may be challenging for your baby, it may take a long time to complete a feeding. Generally, if feeding takes longer than 30 minutes, babies are expending more calories trying to feed than the calories they are eating. My daughter had difficulty sucking as a young infant, is that characteristic of children with Down syndrome? Yes. Due to the influences of low muscle tone, tongue size and tongue functioning, babies with Down syndrome often present with difficulty latching on to the nipple and initiating a strong suck pattern that is rhythmic and well coordinated with respiration. I find spoon feeding frustrating because my child shoots back everything I place in her mouth. What can I do? Recycling, (which happens when you place as much in your child’s mouth as she pushes back during swallowing), can be very frustrating for the feeder as well as the child. Recycling is common in children with Down syndrome secondary to tongue protrusion used during swallowing. Your oral motor feeding specialist can give you more specific advice but to start off with, try using the spoon technique by placing a flat bowled spoon on the middle of your child’s tongue and provide firm but gentle downward pressure encouraging your child to suck the food off of the spoon. In addition to reducing tongue protrusion during the swallow, this will eventually stimulate active top lip movements necessary to clean the spoon. Good muscle tone of the top lip can also “remind” the tongue to stay inside the lips. For some babies, placing the spoon in laterally will help reduce the tongue protrusion. My child usually has his mouth open with his tongue out most of the time. I know that this is typical for children with Down syndrome but is there any exercises to reduce the tongue protrusion? If airway compromise or obstruction (large adenoids) is ruled out, your oral motor feeding specialist can provide your child with a variety of exercises and activities which strengthen lips provide more jaw stability and facilitate a more neutral tongue rest position. These activities can lessen the stereotypical 70

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look of a child with Down syndrome and possibly facilitate clearer articulation of speech sounds, making communication easier for the child. I can not get my 18-month-old child to eat anything but smooth baby food. What should I do? The transition to textured foods can be very difficult for a young child with Down syndrome. Again, low muscle tone and tongue functioning impacts a child’s ability to learn to move their tongue to efficiently handle increased textured foods resulting in gagging, vomiting and refusal of textured foods. Do not force your child to eat foods that their mouth is not ready to handle. Find a speech pathologist who specializes in pediatric feeding and swallowing disorders to provide therapy for your son so that he can develop the strength and skills necessary to efficiently and safely manipulate food textures. Won’t my child just figure it out one day? Every one tells me that he will out grow his texture refusal. Unfortunately, most children do not just outgrow texture refusal. Additional feeding complications or behavioral issues may result if the refusal is not thoroughly evaluated and managed. Some children become very “strong willed” and may eventually refuse all textures. Some children produce a gag or vomit in response to the sight, smell, taste or texture of the food. Some children may accept textured foods, often reluctantly at first, and then learn to swallow them whole or inadequately manipulated. This situation is dangerous as it can result in airway obstruction or gastrointestinal compromise. In these cases, the skills necessary for chewing have not been developed. Please see FAQ on Swallowing Food Whole, Is My child Chewing? and Reflux for more information. How do I know if my child is at risk for dysphagia (swallowing disorder)? When children have oral motor problems and difficulty eating, they are at risk for dysphagia. The modified barium swallowing study (MBS) is the standard for evaluating dysphagia. The MBS uses video x-rays to evaluate oral/pharyngeal (mouth and throat) structure and function during eating. It is the only evaluation tool that can rule out aspiration and obstruction. A 1996 research study used the MBS to WWW.TDSN.ORG

evaluate the swallowing function of 19 children under four years of age diagnosed with Down syndrome. This research study identified the following disorders: • Oral stage difficulties related to jaw strength and tongue functioning. • Mild to severe delayed swallow. The swallow was initiated in the pharynx (throat) after hesitation or pooling. A typical swallow is initiated in back of the mouth. • Aspiration (the entrance of food or liquids into the airway). Ten of nineteen children aspirated during the modified barium swallowing study. Eight of those who aspirated, aspirated silently. Silent aspiration is particularly dangerous because the aspiration occurs without simulating a protective cough response. The production of a cough could protect the airway by expelling the aspirated food or liquid.

Now I’m concerned. How do I know if my child is aspirating or is at risk for aspiration? This study confirms what several pediatric dysphagia studies reveal: clinical identification of aspiration is very difficult. The following are aspiration red flags indicating the benefit of a modified barium swallow study:

• Wet sounds congestion or rattling during or after feeding • Wet cough • Hard audible swallows • History of frequent colds or congestion- especially if they last a long time • Pneumonia

What do I do if my child has one or more of these aspiration risks? If you suspect that your child aspirates or is at risk for aspiration, immediately contact your physician who can refer you for an oral sensori-motor feeding evaluation and if indicated, a modified barium swallow study (MBS). These evaluations will provide the information necessary to individualize a therapy program with goals and home program activities to facilitate the oral sensori-motor skills necessary for safe feeding and swallowing. For these and other FAQs related to feeding and swallowing and speech and language or for more information on Carolina Pediatric Dysphagia please call (919) 877-9800 x114 or visit www.feeding.com.

• Choking or coughing WWW.TDSN.ORG

NEW PARENT HANDBOOK

Growth charts Growth charts for children with Down syndrome can be found online at http://www.growthcharts.com/ charts/DS/charts.htm. Each chart shows five percentile curves. An example of how percentiles work is as follows: Suppose we

http://www.growthcharts.com/charts/DS/mali0to3.gif

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sample 100 children with DS (all the same age) and arrange them according to ascending height. We can find the 10th percentile by plotting child number 10, and the 90th percentile would be the height of child number 90.

http://www.growthcharts.com/charts/DS/feli0to3.gif

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If you plot your child’s data, and he or she is shown as being in the 50th percentile, you could assume if we lined up 100 children your child’s age, that 49 would be shorter and 50 taller than he or she.

http://www.growthcharts.com/charts/DS/mawp0to3.gif

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http://www.growthcharts.com/charts/DS/fewp0to3.gif

NEW PARENT HANDBOOK

Social and communication issues By Thomas L. Layton, Ph.D. Center for Children with Down Syndrome, NCCU (919) 530-7231 and TLayton@wpo.nccu.edu

and preschool ages. The Developmental Chart has not been scrutinized by colleagues or parents, and, therefore, provides only our best judgment of what can be expected.

It is important to point out that all children, even typically developing children, do not look alike. Each child is different and progresses at his or her own rate: each presents with particular strengths and demonstrates inherited weaknesses. This, of course, is the same for children with Down syndrome.

ne of the most frequently asked questions by parents of children with Down syndrome is how their child is doing compared to other children with Down syndrome? They are curious as to whether their child is keeping up with typically developing children, but realize that it is more important to judge their child with other children with a similar syndrome. To assist in the answer to this question, I have developed a Developmental Chart for Children with Down syndrome. The Developmental Chart provides the best information I know about young children with Down syndrome seen in our clinic as well as what we have read in the literature. It also provides what typically developing children demonstrate during infancy, toddler, 74

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It is hard to just present a picture of what a child with Down syndrome looks like at a particular age. A lot depends upon the childâ&#x20AC;&#x2122;s medical and health issues. For instance, has the child had a problem with hearing, especially middle ear pathology? If so, this can slow down or affect the development of speech production and expressive language. Does the child demonstrate related difficulties such as autism? This clearly can affect the social interaction and rate of language acquisition. Does the child have a severe oral-motor problem? Again, this problem can delay speech production, can affect WWW.TDSN.ORG

the quality of spoken speech, and can alter expressive language skills. It is important, therefore, for a parent to understand these issues when seeking information about what to for their child and what services are available. How a speechlanguage pathologist helps a child is clearly related to these and other social, cognitive, emotional, and health issues. There are several publications available to help parents better understand these issues. It is not the intent to delve deeply into these areas, but instead to present the communicative skills of young children with Down syndrome. DEVELOPMENTAL CHART FOR CHILDREN WITH DOWN SYNDROME The Developmental Chart begins at Birth and increases in 6 months steps until age 24 months, at this point it progresses in 12-month steps. The Chart ends when the child is just turning 6 years of age (or 71 months). The reason for the difference in the early ages compared to the later ages is that younger children, even children with Down syndrome, progress more rapidly in the younger ages than they do in the older ages. This is especially true for motor skills as well as language skills. The following guidelines are what we have found to be true for most children with Down syndrome. BIRTH TO 5 MONTHS During the first stage, Birth to 5 months, a parent can expect their child to react to a sound sometimes and not at other times. The reason for this is that the child may be congested with a middle ear fluid, or just may not be attending as readily to his environment. Inconsistent responses to sounds are a common occurrence at this age. Because of this, the child with Down syndrome may or may not turn his/her head toward the sound source and may or may not be watching the parents’ face when they talk. It is strongly suggested that a child should be seen for an audiologic evaluation since it is well known that middle ear problems are common and children with Down syndrome are more often prone to have a sensorineural hearing loss. It is, therefore, important to have the child’s hearing checked early. Children with Down syndrome seldom vocalize during the first 5 months of life, which often concerns parents. This concerns us too, but as long as the child’s hearing has been checked and the child does not demonstrate oral-

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motor problems, it should not be too alarming. Just keep talking to your child and read books together on a daily basis. Reading is an excellent teaching tool for speech, language, and cognitive development. We find many young children, even 4 – 5 months of age, love to be read too. 6-11 MONTHS The children during the second stage, or 6-11 months, begin to watch their parents’ face when being talked too and localize where a sound has come from, especially when the sound is sudden or unexpected. These children notice their parents’ reprimands, such as, saying “no-no”; but, understanding of words is not really expected yet. Most children with Down syndrome do not begin to babble or “talk to themselves” until around 10 months of age. Babbling is an important indicator as to how well the child is doing and whether he or she will be a talker later on, it helps to determine whether a child will or will not have trouble with spoken speech. Just because a child does not babble does not necessarily mean he or she will not talk later on. It may, however, indicate that more oral-stimulation and speech-stimulation is needed to assist the child in developing the needed movements for later speech productions. 12-17 MONTHS The children at this age are beginning to show signs of language understanding. Parental reports of vocabulary development indicate these children demonstrate an understanding of about ten words and try to communicate by looking at the parent, gesturing, or moving as if to say something. These children want to communicate, but the motor speech are of the brain is not developed sufficiently to allow for it. Thus, we encourage the use of manual signs to allow the children to express his/her wants and needs. Signing has also been demonstrated to facilitate speech production as well as higher language skills in children with Down syndrome. Oral-motor skills have improved so that now they can chew semisolid foods, blow bubbles, and can stand up if allowed to hold onto something. When this occurs, it is a strong indicator that spoken words are about to appear. 18-23 MONTHS Comprehension of words, during this stage, has grown to 20 words. The child now should be chewing solid foods, sucking through a straw, standing, and walking. NEW PARENT HANDBOOK

Children now like to listen to simple stories and are beginning to point to objects and pictures in the story. These children are more interested in producing sounds and attempt to repeat sounds, especially sounds of animals. However, there are still no intelligible spoken words yet. Feelings are beginning to be displayed more openly, such as showing displeasure when a toy is removed or throwing a toy on the floor when it will not work. The child, at this stage, has a clear choice of favorite toys and seeks or requests them, often with gestures. 24-35 MONTHS This stage is marked by the obvious comprehension of language. The child has a wide understanding of words, including nouns, verbs, adjectives, and some prepositions. He or she is a social person: one who wants to interact with others and be a part of family “events.” The child wants to show others a favorite toy or retrieve an object on request: the child watches others carefully, by holding good eye contact, waiting, and responding when talked too, or repeating an activity when asked to do something again. Unfortunately, many children (i.e., approximately 40 percent) demonstrate signs of poor oral motor skills. These poor oral motor skills are quite obvious at this stage and can have an effect on the child’s eating, chewing and swallowing. They also can have an effect on spoken words. Typically, most children with Down syndrome, at this stage, still do not produce spoken words. 36-47 MONTHS Do have concepts and social exchanges that are more like the typically developing The child of 36-47 months is now ready to begin to speak. This is when the child says his/her own name, labels animals, requests “bottle” or “juice”, and calls for “mommy” and “daddy.”

48-59 MONTHS Children at this stage are more talkative and typically produce 20-30 intelligible words, combined with other non-intelligible words. Parents often report that the child, at this stage, is trying to say phrases and sentences, but no one can understand them. Comprehension has now grown to where the child understands as many as 500 words. These children listen to much longer stories and attend to stories that are 15-20 minutes long. Some spoken twoword combinations are heard, and the child may ask a question by raising his/her pitch at the end of the phrase. The word “why” is often heard. Speech sounds, produced during this stage, are typically those that develop early: p, m, n, w, h. However, they are often omitted at the ends of words. Since most of these children have a weak auditory memory and demonstrate poor sound-to-symbol associations, this could account for the poor speech production. Children with oral motor impairments tend to produce words with just vowels and produce more sounds that are formed toward the back of oral cavity, such as, k and g. They have less ability to use their tongue tip or close their lips when producing sounds. It is for this reason that intelligibility is so poor for this group of children. We recommend oral motor games and massage to stimulate lip closure and tongue tip movement. A variety of whistles, blowing through straws, sucking through juice boxes, and musical straws are some lip rounding activities. Tongue exercises include licking a lollipop up-and-down, running the tongue around the lips that have been coated with a flavored substance, and holding a life-saver candy to the top of the mouth.

During this stage, the child should have approximately 10-15 intelligible words. Comprehension also has grown to where the child understands as many as 75 different words. The child points to his/her toes, eyes, and nose, and follows a simple one step command, such as, “put the block on the chair,” or “put the book away, please.” The child is also interested in listening to simple stories, either those being read or those being told by someone else, especially about the child’s adventures for that day.

60-71 MONTHS During this stage, the children become conversationalists: they engage in short dialogues with others and often use 3-4 word sentences. They actually produce hundreds of intelligible words, although there still may be many sound errors. Typically, these sound errors include substitutions (i.e., t for s, t for th, p for f) or distortions, especially fricatives (i.e., f, v, s, z, sh, ch, zh). These fricatives distortions are not produced with a high clear frequency sound, but instead are produced more like a “slushy” sound.

The child with an oral motor problem, however, is less productive in spoken words. He or she may attempt to speak several words, but few individuals, or only a family member, can understand them. There may be one or two words that others understand clearly.

Children now begin to ask simple questions, recognize nearly all of the primary colors, use both verbs and adjectives in their sentences, and use some morphemes like plurals (dog, dogs), irregular past tense (went), and actions (-ing, running). Pronoun use includes I and

TRIANGLE DOWN SYNDROME NETWORK

WWW.TDSN.ORG

me in the subject position; as well as, you, mine, and your. Sometimes the child uses the pronouns he and she appropriately, while other times they are confused with the gender. Children, with oral motor impairments, produce many omitted sounds. The omitted sounds occur in the initial position (“-ar” for “car”), in the medial position (“boel” for “bottle”) as well as the final position (“bi-” for “big”). However, their comprehension is similar to other children with Down syndrome, i.e., approximately 500 – 900 words: it is the production of speech that clearly differentiates the two groups. COMPARISON WITH TYPICAL CHILDREN It is obvious that children with Down syndrome do not keep up with the rate of communication skills of typically developing children, although there are some noticeable similarities between the groups. For one thing, at the younger stages (i.e., Birth to months, 6-11 months, 12-17 months and 18-23 months), the children with Down syndrome seem to be only around 6 months behind their typically developing peers. An exception to this is the number of spoken words, where the children with Down syndrome tend to lag as much as a year behind. Also a dissimilarity exists in the rate of vocabulary comprehension, where the children with Down syndrome appear to increase their vocabulary comprehension from stage to stage, but just not as fast as their typically WWW.TDSN.ORG

developing peers. There are, however, quite a few similarities in gestures, socialization, and playing with toys. These areas seem to lag only slightly behind. At the later stages, beginning at around 24 months of age, the gap between the children with Down syndrome and the typically developing peers seems to widen. CONCLUSION It is hoped that the Developmental Chart has provided clarification for where children with Down syndrome fit compared to typically developing peers. It is hoped that it sheds some light on how your individual child is doing. The value of early intervention, oral motor training, speech stimulation, joint-book reading, and language training has not been discussed. It is important to realize that many children with Down syndrome are fully included in regular education classrooms. These children started off much different from their typically developing peers, but through strong parent advocacy and professional assistance, they made outstanding gains. Your child can do this too. It is my expectation that in 5 years the Developmental Chart will be outdated: the stages will need to be altered because early and appropriate intervention has made a difference among children with Down syndrome. Until then, use the chart to determine your child’s progress and use it to help plan for the next stage.

NEW PARENT HANDBOOK

Emergent literacy By Thomas L. Layton, Ph.D. Center for Children with Down Syndrome, NCCU (919) 530-7231 and TLayton@wpo.nccu.edu

urrent thinking views literacy as an interaction between listening, speaking, reading, and writing. Each is an important function for the other. Listening, for instance, is an important part of comprehending the theme of a story; whereas learning to read can help to produce sounds correctly, or to develop vocabulary skills, as well as for expanding longer sentences. Writing teaches the child spelling, left to right orientation, correct production, and fine motor skills. Other concepts involved in emergent literacy include: learning to read from left to right, understanding print is related to speech, knowing letters must be learned, and organizing language through appropriate grammar (van Kleeck, 1990). 78

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It has been documented that typical developing children are highly exposed to literacy before entering school. For example, children from literate homes usually have over 1,000 hours of informal reading and writing encounters before entering school. In recent years, a few investigations have reported on book reading between parents and children with Down syndrome. The findings suggest that more and more parents are reading earlier and more often with their children. Furthermore, parents do expect their children to be able to read independently and for pleasure. The intent of this brief article is to introduce some of parent-child reading methods to help increase early reading for children with Down syndrome. Some parents may already apply these methods. Nevertheless, it is hoped that the suggestions will stimulate additional reading between parents and child. In our clinic, we encourage parents to introduce reading in a naturalistic setting even before the child has learned to WWW.TDSN.ORG

speak. For instance, environmental print can help the child develop initial symbol awareness. This can be done by cutting pictures and words from the child’s favorite food products, toys, games, etc. The parent can collect the pictures in a box for future use or laminate them and attach stick-on-magnets so they can be displayed on the refrigerator (or a magnetic black-board). We have even taken our camera and went around town snapping pictures of favorite places to visit, like McDonald’s, Winn Dixie, the Library, Toys R Us, etc. We then laminate the pictures along with written words and place them on the refrigerator. The child can go to the refrigerator and select the picture when he/she wants to get something, or go somewhere. Parents can also select the pictures and talk about getting ready to go to the library and then put the Library picture in a special spot. When it is time to really go to the library, the child can go and get the picture and take it with him/her. (This type of activity helps the child to associate pictures with an activity, to talk about future events, and to anticipate what is going to happen.) Later on when dad arrives home from work, the child can go find the picture, show it to dad and talk about where he/she went. Thus, the child is talking about past events. Reading stories on a daily basis is important. There are several strategies that can help the child attain higher language skills, learn to express the meanings of stories, and help to acquire early word concepts. First, the child should pick out the story. Successful reading begins with an interest in the story. However, the books should contain a repeated line throughout the story. Some of our favorite books are Brown Bear, Brown Bear, What Do You See?, The Very Hungry Caterpillar, and the Napping House for young beginners, like age 14 to 30 months. For a little more advanced children, i.e., 3 to 5 years, parents might want to consider: Stone Soup, Are You My Mother? and Just Grandma and Me. Reading the story aloud is important. During the reading the parent should ask lots of questions. What is this? What do you think is going to happen next? Where is he going? Reading the same story over and over, on different days, also prepares the child to answer the questions. If your child answers the questions with only one-word utterances, expand them to two words. Or, if he/she answers with short phrases without auxiliaries (i.e., is, are, was) or with missing articles (i.e., a, an, the), insert these elements in the child’s phrases. WWW.TDSN.ORG

While reading the story stop and try to discuss the story applying it to some real life experience that your child had. Always, comment on your child’s contributions during the story (even if most of what your child is saying is unintelligible). You should point out words in the story, and see if your child can find the same word on the next page. After you have read the story a few times, pause at important times during the story so the child can complete the sentence; for example, in the book Brown Bear, Brown Bear, What Do You See? the repeating line is the title of the book followed by, “I see a red bird looking at me.” The parent could stop after the title line to see if the child can repeat the next line. If not, provide part of it, such as, “I see a red (pause)” and wait for the child to respond. The parent can also make purposeful errors for the child to correct; for example, for the previous line the parent could say, “duck” instead of “bird”, i.e., “I see a red duck looking at me.” This allows the child the opportunity to change the sentence by correcting the parent. This is a powerful language skill and tells the parent the child was listening. The parent can introduce writing along with the story. You can begin simply with drawing a picture of the story, such as, drawing a red bird, yellow duck, white dog, etc. Have the child tell you what he/she is drawing and then label each picture. Then, the next time the story is read the child’s picture can be used to help find the pictures and words in the story. The parent can also have the child simply copy meaningful words from the story. The parent simply writes the word on the paper and has the child copy it. Remember that initially the child’s copying may not look anything like the adult’s. Regardless, praise the child and show it off. It is the doing that is more important than the product. We have also found that writing and tracing daily improves hand strength, coordination, as well as, letter identification. Practicing drawing and writing is important. Another important strategy is to teach the child to write his/her name. This is most rewarding and is a good first word to learn: it teaches the child individual letters, form, and shape. Most children want to learn to write their name. The parent could begin with tracing and copying. Parent-child book reading and writing are excellent ways to help a child learn his/her sounds and to improve language skills. Not only that, it is fun. It is a easy and enjoyable method of teaching your child. So, go have fun and good luck in your book reading.

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Ear and hearing considerations By Thomas L. Layton, Ph.D. Center for Children with Down Syndrome, NCCU (919) 530-7231 and TLayton@wpo.nccu.edu

s ear, nose, and throat surgeon and audiologist, caring for the ears and hearing of children with Down syndrome is among the most challenging but yet rewarding aspects of our practice.

spine instability. But the effort to improve hearing and to reduce the number of ear infections is more than made up as we watch the children grow and develop successfully to their maximum potential unimpeded by hearing loss and repeated ear infections. In this discussion I would like to share with you our approach to the care of your children. EXTERNAL EAR CANAL

Special considerations of anatomical differences (such as small ear canals, alterations in the skull base causing eustachian tube dysfunction) and unique physiology (such as atlanto-axial instability, middle ear and inner ear hearing loss) need to be taken to ensure successful outcomes.

The ear canals of children with Down syndrome are almost universally much smaller and more narrow. This allows cerumen (wax) to block the canals and make examinations and procedures more difficult. At times general anesthesia in the OR is required to clean and inspect the ears.

A normally straight forward procedure such as placing tubes and removing adenoids requires special equipment, skill, and resolve to deal with the small ear canals and special X-ray studies and positioning on the operating room table to avoid problems of cervical

TYMPANIC MEMBRANE (TM, EARDRUM), MIDDLE EAR, EUSTACHIAN TUBE

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Children with Down syndrome have poor eustachian tube function leading to chronic middle ear fluid and WWW.TDSN.ORG

hearing loss. The eustachian tube, designed to ventilate the middle ear, must in the majority of children be bypassed via the use of small tympanostomy tubes (pressure equalizing or PE tubes) which straddle the eardrum and allow air to pass into the middle ear. Unfortunately the tubes stay in place only from six to nine months and may need replacement. HEARING EVALUATION The following is taken verbatim from an article in Down Syndrome Quarterly, volume 2, number 4, December 1997, pages 1-4 by Dr. Nancy Roizen, University of Chicago: The majority of children with Down syndrome have some type of hearing loss. Therefore, all children with Down syndrome must have the status of their hearing determined within the first few weeks of life. Children without a hearing loss on the first evaluation still need continued monitoring in light of the high incidence of conductive hearing loss in relation to middle ear effusions. Children with hearing losses need a clarification of the type of hearing loss (conductive, sensorinerual, or mixed) and treatment of the hearing loss medically with antibiotics and surgically with tympanostomy tubes. Because of the persistence of middle ear problems, the frequency of extremely small external ear canals, and the need for open external canals free from cerumen, many children with Down syndrome need to be monitored every three months by an otolaryngologist.

testing, and formal ABR testing. Continued follow-up every two to three months is a must. 3. Routine monitoring of middle ear effusions and prompt appropriate antibiotic reatment is recommended. If the effusions persist, then tubes should be placed 4. Hearing aid amplification should be provided if there is an uncorrectable conductive hearing loss or if a sensorineural loss is detected.

UPPER AIRWAY OBSTRUCTION The craniofacial characteristics of children with Down syndrome (flat skull base, midface narrowing) are responsible for the increased incidence of nasal blockage and discharge, obstructive sleep apnea, and mouth breathing. Enlargement of tonsils and adenoids may also block the upper airway and lead to the need for tonsillectomy and adenoidectomy (T&A). Unfortunately T&A does not lead to as dramatic relief as in children without Down syndrome. If T&A is to be performed, then x-rays of the neck to rule out instability of the cervical spine (atlanto-axial instability) must be performed.

Many cases of hearing loss including both sensorineural and conductive types are responsive to the therapy. Hearing aids need to be considered. Educational intervention and speech therapy are extremely important. Nothing less than aggressive management of hearing problems in children with Down syndrome is acceptable. We agree most heartily with Dr. Roizen, especially in the need for aggressive management, i.e. doing all that is possible to correct any hearing loss, not to pass off any hearing loss as inconsequential, and not to assume that the hearing loss will correct itself over time. Our current recommendations are as follows: 1. Meticulous otologic examinations, with cleaning of cerumen in the OR as necessary 2. In the first month of life, referral to a pediatric otolaryngologist and pediatric audiologist for complete and comprehensive medical and audiometric evaluation including tympanometry, acoustic reflex

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The heart and Down syndrome (c) The National Down Syndrome Society

bnormalities of the cardiovascular system are common in Down syndrome. Approximately half of all infants born with Down syndrome have a heart defect. Many of these defects have serious implications and it is important to understand them and how they may affect the child so that appropriate medical treatment may be provided. WHAT ARE THE MOST COMMON HEART DEFECTS IN CHILDREN WITH DOWN SYNDROME? The most common defects are Atrioventricular Septal Defect (formally called Endocardial Cushion Defect), Ventricular Septal Defect, Persistent Ductus Arteriosus and Tetralogy of Fallot. 82

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WHAT IS AN ATRIOVENTRICULAR SEPTAL DEFECT? An Atrioventricular Septal Defect is caused by a failure of tissue to come together in the heart during embryonic life. This results in a large opening in the center of the heart, with usually a hole between the two pumping chambers (a Ventricular Septal Defect) and between the two collecting chambers (an Atrial Septal Defect) as well as abnormalities of the two atrioventricular valves, the mitral and tricuspid valves. Of those children with Down syndrome who are born with congenital heart disease, an antrioventricular septal defect is the most common. In less severe cases, Ventricular Septal Defects and Atrial Septal Defects can also occur separately.

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WHAT IS PERSISTENT DUCTUS ARTERIOSUS? The ductus arteriosus is a channel between the pulmonary artery and the aorta. During fetal life it diverts blood away from the lungs because prenatal blood is already oxygenated from the mother. After birth this channel usually closes on the first day of life. If it does not close, it is termed “persistent” and results in an increased flow of blood into the lungs. WHAT IS TETRALOGY OF FALLOT? • This is a term given to a heart condition composed of four abnormalities: • Ventricular septal defect • A narrowing of the passage from the right ventrical to the lungs • An overenlarged right ventrical because of the backup of blood • An overenlarged aorta, which carries blood from the left ventrical to the body

WHAT IS THE RELATIONSHIP OF HEART DEFECTS TO THE RESPIRATORY SYSTEM? The lungs of children with Down syndrome do not develop as fully as in the general population. Consequently, the growth of blood vessels throughout the lungs is limited. The narrowed arteries of the lungs hold potential for lasting consequences due to the increased pressure and flow of blood through the lungs.

syndrome who is born with a normal heart. There may be residual defects (such as imperfect valves in cases of Atrioventricular Septal Defect), but their effect on health is often minimal. WHAT ARE THE GUIDELINES FOR CHOOSING A HOSPITAL? Look for a medical center in a major metropolitan area which has experience in open heart surgery on infants, and experience in operating on infants with Down syndrome in particular. A hospital which conducts at least 10 such operations a year and has a good survival rate would be considered an experienced hospital. WHAT SHOULD BE CONSIDERED IN SELECTING A SURGICAL TEAM? Again, experience, together with the parents’ rapport with the physician, should be the determining factor in the choice. It is important that an experienced anesthesiologist be selected, as children with Down syndrome often have airway problems. — See more at: http://www.ndss.org/Resources/ Health-Care/Associated-Conditions/The-Heart--DownSyndrome/#sthash.9IQBxfvf.dpuf

HOW ARE THE DEFECTS DIAGNOSED? Some children with Down syndrome and major heart defects will present with heart failure, difficulty breathing and failure to thrive in the newborn period; however, because in some children the defect may not be at first apparent, it is important that all children born with Down syndrome, even those who have no symptoms of heart disease, should have an echocardiogram in the first two or three months of life. Some heart conditions are also identified during prenatal ultrasounds. WHAT IS THE RECOMMENDED TREATMENT? Heart surgery to correct the defects is recommended and it must be done before age five or six months in order to prevent lung damage. Although the complexity of the defects raises the risk of surgery slightly above that of surgery on children without Down syndrome, successful surgery will allow many children with heart conditions to thrive as well as any child with Down WWW.TDSN.ORG

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Physical therapy By Patricia C. Winders Down Syndrome Quarterly

he appropriate goal of physical therapy for children with Down syndrome is not to accelerate their rate of gross motor development as is commonly assumed. The goal is to minimize the development of abnormal compensatory movement patterns that children with Down syndrome are prone to develop. Early physical therapy makes a decisive difference in the long-term functional outcome of the child with Down syndrome. Beyond this goal, there is an additional opportunity that physical therapy makes available to parents. Because gross motor development is the first learning task that the child with Down syndrome encounters, it provides parents with the first 84

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opportunity to explore how their child learns. There is increasing evidence that children with Down syndrome have a unique learning style. Understanding how children with Down syndrome learn is crucial for parents who wish to facilitate the development of gross motor skills as well as facilitating success in other areas of life including language, education and the development of social skills. The mother of an infant with Down syndrome recently asked about beginning physical therapy for her child. She began the meeting by asking: â&#x20AC;&#x153;If we start physical therapy now, what difference will it make when my child is 9 or 10 years old?â&#x20AC;? What a great question! It is exactly how she should be thinking about physical therapy, and, in fact, it is exactly how she should be thinking about all the services for WWW.TDSN.ORG

her child. She has focused on the long-term functional outcome for her child. That question and that focus have guided my work for many years. This paper will answer her question. What difference, indeed, will it make years from now, when a child is an adolescent or an adult, whether or not he or she had physical therapy as a child? This article will address the goal of physical therapy for children with Down syndrome, and then looking beyond that goal, will discuss an additional opportunity that is available to parents while their child is receiving physical therapy. THE GOAL OF PHYSICAL THERAPY Before discussing what the goal of physical therapy for children with Down syndrome is, it is necessary first to understand what the goal is not. The goal of physical therapy is not to accelerate the rate of gross motor development. This statement is more controversial than it may initially seem to be. Many parents, many physical therapists and many insurance companies assume that the value of physical therapy can be measured by whether or not a child is achieving motor skills more quickly. Some therapeutic techniques promote themselves by saying that children who are treated with that technique develop motor skills earlier. If, however, one begins with the premise that the goal of physical therapy is to accelerate the rate of gross motor development, then one needs to answer the question posed by that mother. What difference will it make in 9 or 10 years that a child with Down syndrome walked at 21 rather than 24 months of age? How will that three-month difference affect a child’s long-term functional outcome? I do not believe that it will make any difference whatsoever, and, therefore, I do not believe that it is the appropriate goal for physical therapy for children with Down syndrome. The rate of gross motor development in children with Down syndrome is influenced by a number of factors, including: • • • •

hypotonia ligamentous laxity decreased strength short arms and legs.

These factors are determined by genetics, and although some may be influenced by physical therapy, they cannot be fundamentally altered.

So then, what is the goal of physical therapy for children with Down syndrome? Children with Down syndrome attempt to compensate for their hypotonia, ligamentous laxity, decreased strength and short arms and legs by developing compensatory movement patterns, which, if allowed to persist, often develop into orthopedic and functional problems. The goal of physical therapy is to minimize the development of the compensatory movement patterns that children with Down syndrome are prone to develop. Gait is a primary example. Ligamentous laxity, hypotonia and weakness in the legs lead to lower extremity posturing with hip abduction and external rotation, hyperextension of the knees, and pronation and eversion of the feet. Children with Down syndrome typically learn to walk with their feet wide apart, their knees stiff, and their feet turned out. They do so because hypotonia, ligamentous laxity and weakness make their legs less stable. Locking their knees, widening their base, and rotating their feet outward are all strategies designed to increase stability. The problem is, however, that this is an inefficient gait pattern for walking. The weight is being borne on the medial (inside) borders of the feet, and the feet are designed to have the weight borne on the outside borders. If this pattern is allowed to persist, problems will develop with both the knees and the feet. Walking will become painful, and endurance will be decreased. Physical therapy should begin teaching the child with Down syndrome the proper standing posture (i.e., feet positioned under the hips and pointing straight ahead with a slight bend in the knees) when he is still very young. With appropriate physical therapy gait problems can be minimized or avoided. Trunk posture is another example. Ligamentous laxity, hypotonia, and decreased strength in the trunk encourage the development of kyphosis, which is often first seen when the child is learning to sit. Children with Down syndrome typically learn to sit with a posterior pelvic tilt, trunk rounded and the head resting back on the shoulders. They never learn to actively move their pelvis into a vertical (upright) position, and therefore, cannot hold their head and trunk erect over it. If this posture is allowed to persist, it will ultimately result in impaired breathing and a decreased ability to rotate the trunk. Physical therapy must teach the child the proper

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sitting posture by providing support at the proper level even before the child is able to sit independently. First, the therapist provides upper trunk support, then middle trunk support, then support between the scapula and the waist, then support at the waist and finally pelvic support. The support provided at each level keeps the spine and pelvis in proper alignment until the child develops the strength to hold that segment in alignment himself. Appropriate physical therapy can minimize problems with trunk posture. Physical therapy services: • should be concerned with the child’s long-term functional outcome; • hould seek to minimize the development of compensatory movement patterns; • should be based on a thorough understanding of the compensatory movement patterns that children with Down syndrome are prone to develop; • should be strategically designed to proactively build strength in the appropriate muscle groups so that the child with Down syndrome develops optimal movement patterns; • should focus on gait, posture and exercise.

So the answer to that mother’s question is that physical therapy for the young child with Down syndrome will make an enormous difference not only when the child is 9 or 10 years of age, but also when he or she is an adolescent and an adult. It can and should result in adults who are healthier and more functional. THE OPPORTUNITY OF PHYSICAL THERAPY If physical therapy has achieved the goal of minimizing the development of abnormal movement patterns, it will have influenced the health of the child with Down syndrome throughout the course of his or her life. But there is actually an opportunity beyond the development of motor skills of which parents may wish to take advantage while their child is receiving physical therapy. There is mounting evidence that children with Down syndrome do not learn in the same manner that typical children do. They have a different style of assimilating information, and, therefore, the usual methods of instruction are less effective. The development of gross motor skills is the first learning task that the child with Down syndrome and his parents will face together. There are many other challenges to come 86

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including language, education, and the development of social skills, but learning gross motor skills is the first developmental challenge. The opportunity is for parents to use the arena of gross motor development to begin to understand how their child learns. Knowing how to facilitate their child’s learning will be critical to their success in collaborating with their child throughout his or her lifetime. Wishart (1991), a psychologist at the University of Edinburgh in Scotland, has done leading edge work in studying how children with Down syndrome learn. She writes: Despite the absence of an adequate developmental database, theory and practice in this area have nonetheless continued to assume that the process of learning in children with DS is essentially a slowed-down version of normal cognitive development. An increasing number of recent studies are suggesting that this ‘slow development’ approach may be ill founded and that learning may differ significantly in structure and organization from that found in ordinary children ... Infants with DS consistently showed evidence of underperforming, with avoidance routines being produced on many of the tasks presented, regardless of whether these were above or below the infant’s current developmental level. New skills, even once mastered, proved to be inadequately consolidated, often disappearing from the infant’s repertoire in subsequent months. Follow-up studies using a wider range of tasks provided additional evidence of this tendency to ‘switch out’ of cognitive tasks, with many children failing on items which should have been well within their capabilities and which had been passed in earlier sessions… Regardless of whether these irregular performance profiles reflect genuine developmental instability or are the result of fluctuating motivation in assessment-type situations, it remains that if test behaviour is typical of behaviour in other, everyday situations, development itself must be compromised.

Investigation into the learning style of children with Down syndrome is in its early stages. Kumin (2001) and Oelwein (1995) also have made important contributions in this area. In her book, “Classroom Language Skills for Children with Down Syndrome: A Guide for Parents and Teachers,” Kumin discusses how the insights of Howard Gardner can be applied to children with Down syndrome. Gardner’s book, Frames of Mind, presents the theory of multiple intelligences, which postulates that intelligence is multi-faceted. The theory holds that

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besides linguistic and mathematical intelligences, there are also spatial, interpersonal and musical intelligences, to mention only a few. Kumin notes that it has been her experience that many children with Down syndrome learn well using music. She has also written about the unique learning style of children with Down syndrome, and how it pertains to learning speech and language in her book, “Communication Skills in Children with Down Syndrome: A Guide for Parents” (Kumin, 1994) Oelwein (1995) also has written about the learning style of children with Down syndrome and how it impacts education. She has highlighted the need to consciously assist children with Down syndrome with how information can be effectively filed, stored and retrieved. Her book, “Teaching Reading to Children with Down Syndrome: A Guide for Parents and Teachers,” provides a comprehensive, step-by-step guide to teaching reading to children with Down syndrome. All of this work points to how important it is for parents to have an understanding of how their child assimilates information so that they can be successful partners in their child’s learning. It has been my experience in 20 years of providing physical therapy to children with Down syndrome that they do indeed learn differently and that it is necessary to modify my approach if I wish to obtain the best result. I consider it an important opportunity of my work to help parents begin to understand how their child learns. The following “tips” are provided from many years of working with children with Down syndrome. They are offered to provide a starting point 88

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for both parents and therapists to begin to explore the unique learning style of the child with Down syndrome. 1. Children with Down syndrome have a decreased ability to generalize. This means that a skill learned in one setting does not necessarily transfer to another setting. For instance, a child may be quite competent climbing the stairs at home, but when confronted with stairs at the clinic, he or she may regress to a much more primitive stairclimbing strategy until he or she has relearned the skill in the new setting. 2. Children with Down syndrome need information to be delivered in small bite-sized pieces. It has been my experience that if a child appears to have plateaued, the problem is most likely to be that the next piece of information is too large and needs to be further broken down. 3. The setup is crucial and needs to be as close to perfect as possible. Children with Down syndrome need structure, consistency and a familiar environment if you hope to get their best performance. Do not try something new or challenging when the child is tired, hungry or not at his best for some reason. The quality of the work you do together is more important than the quantity. Minimize distractions in the environment. 4. Follow the child’s lead. The child must be motivated to perform a particular skill. Trying to impose your will on a child with Down syndrome is a losing game. I often try to model my style of interaction after the parent’s. It is familiar to the WWW.TDSN.ORG

child and most likely to be successful. 5. Be attentive to how the child reacts when learning new gross motor skills. Some children are cautious, and others are risky. A cautious child prefers to stay in one position, while the risky child prefers to be in motion. For example, when learning to walk, the cautious child will want lots of support and will be upset if he or she falls. The risky child will like walking because it involves movement and will not be concerned about support or care how many times he or she falls. 6. Know when to quit. Some children will only give you two repetitions at a particular skill and then insist on moving on. Other children will gladly give you a dozen repetitions. Set up the game so that the child is successful and avoid frustration. 7. Be strategic in planning your session. Practice what the child is ready to learn. Tackle the most difficult skills first before the child becomes tired. Alternate difficult skills with easier ones to give the child time to recover his strength. 8. Be strategic in providing support. Children with Down syndrome tend to become quickly dependent on support. Provide as little support as possible while still allowing the child to succeed and remove the support as soon as possible. 9. Skills will be learned grossly at first and then refined. For instance, children will initially learn to walk with a wide base and their feet externally rotated. This is not the optimal gait pattern, but it needs to be allowed initially and then refined through the post-walking skills. 10. Do not interfere with an established skill in which the child has achieved independence. You will not be successful in introducing change and the child will only experience you as nagging. Changes will need to be made at the next level of motor development. For instance, some children, instead of learning to creep on both knees, learn to creep on one knee and one foot. Once this pattern has been established and the child is proficient in its use, you will not be successful in altering it and will succeed only in angering the child. Teach the child to use both knees in climbing up stairs rather than interfering with this established pattern. 11. Children with Down syndrome learn best through a gradual process. WWW.TDSN.ORG

• Introduction of the new skill is the first step. The new skill needs to be introduced slowly and carefully with the goal being simply to have the child tolerate the movement. • Familiarity is the second step. In this step the child becomes accustomed to the skill and how it feels physically. This is the “I get it” phase in which the child understands the game and what is being asked of him or her. • Collaboration is the third step. The child increases his collaboration and cooperation, and at the same time support is decreased. • Independence is the final step where the child has mastered the skill and can perform it independently without support.

These tips are offered tentatively, knowing that they are far from definitive answers. Much more research is needed to begin truly to understand the learning style of children with Down syndrome. It is crucial, however, that parents gain skill in facilitating the learning of their child. Otherwise, as Wishart (1995) says, we “could run the risk of changing slow but willing learners into reluctant, avoidant learners.” Parents who are newly assuming the responsibility of caring for a child with Down syndrome are confronted with a confusing array of treatment options and opportunities. It can be difficult to know where to focus limited time and resources. It is hoped this article will provide parents and caregivers with a starting point and a framework for making decisions about what is important. They should think about proposed therapies just like the mother described in the first paragraph, from the perspective of the child’s long-term functional outcome. Physical therapy is a crucial service, not because it will accelerate a child’s rate of development, but because it will improve a child’s long-term functional outcome by preventing the development of abnormal movement patterns that are likely to become even more serious problems in adolescence and adulthood. Secondly, because gross motor development is the first learning task a child faces, it provides parents and other caregivers with the opportunity to learn how a given child learns. The long-term functional outcome should be the guide in decisions about what to work on, and understanding of a child’s learning style should be the guide in how to work on them.

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f you are a parent reading this web site, you likely have a child with Down syndrome, as I do. My intent with this article is to provide you with some information about how an occupational therapist may be able to help you and your child. Occupational therapists who work with children have education and training in child development, neurology, medical conditions, psychosocial development, and therapeutic techniques. Occupational therapists focus on the child’s ability to master skills for independence. This can include: • self care skills (feeding, dressing, grooming etc.) • fine and gross motor skills • skills related to school performance (eg: printing, cutting etc.) • play and leisure skills 90

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When your child is an infant, your immediate concerns relate to his health and growth, development of the basic motor milestones, social interaction with you and others, interest in things going on around him, and early speech sounds and responses. At this stage an OT may become involved to: • assist with oral-motor feeding problems (this can also be addressed by Speech Pathologists). Due to hypotonia and weakness of the muscles of the cheeks, tongue and lips, feeding is difficult for some infants with Down syndrome. OTs suggest positioning and feeding techniques, and can be involved in doing feeding studies, if necessary. • help facilitate motor milestones, particularly for fine motor skills. Occupational therapists and Physical therapists work closely together to help the young child develop gross motor milestones (eg: sitting, crawling, standing, walking).OTs work with the child at this stage to promote arm and hand movements that lay the foundation for later developing fine motor skills. The low muscle tone WWW.TDSN.ORG

and loose ligaments at the joints associated with Down syndrome are real challenges to early motor development and occupational therapy can help your child meet those challenges.

cutting etc. They will also look at physical positioning for optimal performance (eg: desk size etc.) and assist with program adaptations based on the child’s physical abilities.

When your child is a toddler and preschooler, she will likely have some independent mobility and will be busy exploring her environment. To assist her development you will want to provide her with many opportunities for learning, you will want to encourage the beginning steps in learning to feed and dress herself, you will want her to learn how to play appropriately with toys and interact with other children, you will be encouraging speech and language skills, and you will continue to provide opportunities for refinement of gross motor skills. At this stage an OT may become involved to:

• facilitate self help skills at home and at school. As with all children, our kids with Down syndrome vary in personality, temperament, and motivation to be independent. Some children with Down syndrome have a desire to do things themselves, such as dress and feed themselves. These children may learn these skills by watching others and participating from a young age. Other children may be happy to let others do things for them, and may resist attempts to help them learn these skills. In these cases an OT may be able to help a parent work out these challenges, while helping the child develop better motor skills to be successful in self help skills.

• facilitate the development of fine motor skills. This is an important stage in the development of fine motor skills for children with Down syndrome. Now they will be developing the movements in their hands that will allow them to do many things as they get older, but many children need some therapy input to ensure that these movements do develop. Children do this through play; they open and close things, pick up and release toys of varying sizes and shapes, stack and build, manipulate knobs and buttons, experiment with crayons etc. Your child may face more challenges learning fine motor skills because of low muscle tone, decreased strength and joint ligament laxity. • help you promote the beginning steps of self help skills. An OT can help parents break down the skills so expectations are appropriate, and can suggest positioning or adaptations that might help the child be more independent. For example, a child may have more success feeding herself with a particular type of spoon and dish.

Then your child enters the school system and the focus of your energies changes somewhat again! You help your child adjust to new routines, you attend school meetings to plan your child’s educational program, you focus on speech and communication, you help your child practise fine motor skills for school (such as learning to print), you expect your child to develop more independence in self help activities, and you search out extracurricular activities that will expose your child to a variety of social, physical and learning experiences. At this stage an OT may become involved to: • facilitate fine motor skill development in the classroom. Many OTs work in the school system and provide programs to help children with Down syndrome learn printing, handwriting, keyboarding, WWW.TDSN.ORG

• address any sensory needs your child may have. Sometimes a parent has a concern about things their child does that may relate to the child’s sensory development. For example, a child may excessively put toys in her mouth, she may have poor awareness of her body in space, she may squeeze everything too hard or drop things a lot, or she may not tolerate very well some routines like washing and brushing hair. An OT can offer suggestions to help the child and parents deal with these issues.

As parents we must be concerned with the well-being of our child in all respects. We have so many things to think about and keep track of: medical and dental needs, motor and communication needs, educational needs, advocacy, social and behavioral needs: the list seems to go on and on! We need the help of trained professionals to guide us and to work with our children to help them achieve their potential in life. An occupational therapist is one member of the team that we can rely on to provide professional assistance throughout the growth and development of our children. In Canada, occupational therapy services for children with Down syndrome can be accessed through hospitals, home care programs, infant development programs, specialty nursery schools, public schools, and through private therapy services. Editor’s note: In the U.S., OT services can be obtained through Early Childhood Intervention programs, public and private schools, and from private therapists. Further information about fine motor development can be found in my book “Fine Motor Skills in Children with Down Syndrome”, published by Woodbine House (800-843-7323) in 1998.

NEW PARENT HANDBOOK

Estate planning By Beth LaPierre and Dave Woody

are more alike than different AND, estate and financial planning has very important do’s and don’ts. Whether a family has substantial means or a few assets, it is critical to take time to develop and implement a special needs plan.

Will they be cared for? By whom? To what degree? Will they be ok?

It is our hope that this short introduction will help you understand some of the industry lingo and get you ready for future meetings with your team which may consist of a financial expert, a qualified attorney, a tax professional, social services and/or potential future guardians.

hat keeps you up at night? If you’re like us, many things – including your unique dayto-day activities, ongoing to-do lists, chores, doctor appointments, various therapies, family and work time. And, what unifies us in the middle of the night is our question about what will happen to our children when we are not around anymore?

Dave Woody and I are especially equipped to help navigate these conversations because of our expertise in financial planning and because we are parents of children with special needs ourselves. We know the challenge of articulating (or even thinking about) how to plan for the worst case scenario while hoping for our child’s best case scenario. We know your language and your struggles and your triumphs. Yes indeed, we 92

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We encourage you to engage, to ask any and all questions, and to create your own plan. Your plan could be the single greatest gift you leave to your children. With heartfelt appreciation and respect, Beth LaPierre, Mom to Zach (DS) and Siena (typically developing) David Woody, CLU, ChFC WWW.TDSN.ORG

The Five-Step Planning Process Developing an effective plan usually involves five steps: • • • •

Step One: Focus on the Future Step Two: Think Holistically Step Three: Plan with Intention Step Four: Put Your Plan into Action

• Step Five: Keep it Current

Several unique considerations must be made when a person with special needs is involved. By going through the important steps of special needs planning, you have a chance to avoid potential pitfalls that families with special needs often encounter. Special needs planning involves a number of advisors, and it is important to seek guidance from financial, legal and social services professionals with expertise in the area of special needs. The purpose is to help you identify your financial goals and objectives, let you know where you stand relative to where you want to be, and provide you with a map to help get you to your goals. Step One: Focus on the Future Think for a moment about the quality of life you want for your loved one- not just today, but for decades to come. How can you ensure that person will have what he or she needs when you’re no longer able to provide care? The first step to achieving financial security for a person with special needs is to focus on the future – to develop a clear vision not just of your dreams and goals, but also when and how you plan to achieve them. Ask yourself: • What kind of life would you like the person with special needs to have? • How will he or she live without you? • Where and with whom (if anybody) would he or she live? • Who will provide care? • What lifetime opportunities do you want to provide for your loved one? • What experiences would you want him or her to have? • Have you consulted with an attorney and financial representative who specialize in special needs planning?

Step Two: Think Holistically Part of the challenge in providing a lifetime of support WWW.TDSN.ORG

for a loved one with special needs is estimating how much money you’ll need. Complicating this is the fact that every family has multiple goals that are also important. That’s why the second step in creating financial security for a loved one with special needs is to think holistically — to assess your current situation, determine the feasibility of your goals, set priorities, and then create an integrated plan to achieve them. Taking time to see “the big picture” is crucial to your family’s overall financial security, including that of your loved one with special needs. It is also extremely important in helping to ensure that assets are allocated, titled and passed on in an appropriate manner to preserve your loved one’s eligibility for state and federal benefits. Some of the questions you may want to ask yourself include: • Do you have a complete understanding of government benefits such as Social Security Income, Supplemental Security Income and Social Security Disability Income? • Does your loved one currently own assets with a total value greater than $1,000 or $2,000? • Is there any chance that the government programs or funding your dependent relies upon today may be reduced or eliminated in the future? • What might it cost to continue the serviced your loved one currently received once her or she is no longer part of the educational system? Also, will his or her current health insurance continue to provide coverage? • What if you were no longer able to work? Would your income be sufficient to support your family’s current lifestyle and reach future financial goals? • If you cannot take care of your loved one, will a fulltime caregiver be needed? • Do you expect other family members to be financially and physically responsible for your loved one? Are they willing? Do they have the means and ability to do so? • Will the person with special needs to be able to earn enough income to support him or herself? Should you begin setting aside money or increase the amount you’re already saving to help supplement his or her income?

Step Three: Plan with Intention Creating a comprehensive plan is essential to achieving your goals. That task becomes even more complex for families with special needs. That’s why the third step to creating financial security for a loved one with NEW PARENT HANDBOOK

disabilities is to plan with intention – to create a strategy that takes into account the financial, legal and logistical concerns that may impact your dependent’s quality of life over time. • To ensure your loved one’s needs are met, ask yourself: • Do you have a will? • Have you named a guardian? • If your loved one is a child, how likely is it that he or she will function as an adult? If not, who would apply for legal guardianship if you could not? • Do you have a Letter of Intent to help future caregivers carry out your goals and wishes? • Have you established a special needs trust and named a trustee, successor trustee and possibly co-trustee? • Have you provided adequate funding to ensure lifetime care and quality of life? • Will the funds come from existing assets, future savings and/or life insurance?

Step Four: Put Your Plan into Action A comprehensive financial plan can provide the necessary direction to help you achieve your objectives. But for your plan to succeed, it has to be implemented. That’s why the fourth step in creating financial security for a loved one with special needs is crucial: you have to put your plan into action. To do so, it is important to work with an attorney who can help draft the necessary documents with the appropriate wording to preserve your loved one’s eligibility to received benefits. The sooner you get started, the better. That’s because when you consider the legal, financial and government issues impacting a person with special needs, carrying out your plan’s recommendations may take weeks or even years. Properly drafted and executed legal documents are critical to ensuring your assets will be distributed according to your wishes and that the proper guardian is named for your dependent. • Have your legal documents, such as wills, trusts, powers of attorney, and health care proxies, been worded and prepared to ensure they protect eligibility for important government programs? • Will your financial assets, such as life insurance, annuities and pension/retirement programs, be transferred at your death in a way that does not jeopardize government program eligibility? 94

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• Is there a chance the person with special needs will directly inherit any assets from other relatives? • Have you coordinated planning with relatives to ensure any property to be transferred upon death is left to a special needs trust and not directly to a loved one with disabilities? • Should you register now for any programs from which your dependent would benefit either now or in the future?

Step Five: Keep it Current The financial markets and state and federal laws and regulations are constantly changing; so are the needs of a person with disabilities. This means your financial plan is a work in progress. That’s why the fifth step in creating financial security for a loved one with special needs is to keep it current – to make sure you review and update your plan regularly. By monitoring your plan at least annually, you can ensure it continues to help you progress toward your goals and reflects any changes in the level of care needed, funding provided, eligibility requirements or any other changes in your objectives or circumstances. • Periodically check with relatives to make sure they do not give (or name as direct beneficiary) assets to a loved one with special needs that equal $2,000 or more in value. • Keep all assets held in a special needs trust — separate from your loved one’s personal assets and income streams. • Create a list of important information that your beneficiaries, trustees, executors, and/or named guardians may need. Include the location of important records, legal documents, safety deposit boxes, investments and other accounts, insurance policies, employer or government benefits, and the names of any advisors. • Regularly check special needs trusts to make certain they are adequately funded. • Meet with your expert team of professionals at least once a year to monitor how your plan is performing relative to your objectives.

Estate Planning Defined The primary goal of estate planning is to take care of the people you care about. Estate planning includes deciding to whom, and how, your assets will transfer upon during your life time as well as upon your death. This planning takes on additional importance when WWW.TDSN.ORG

one of your beneficiaries is an individual with special needs, as the receipt of assets might affect that person’s eligibility for government benefits. Properly executed documents include will, trusts, powers of attorney, health care proxies and guardianship provisions should be included and reviewed with your attorney periodically. Protecting Eligibility for Government Benefits Medicaid and SSI • The two major government programs for people with special needs are Supplemental Security Income (SSI) and Medicaid (also called Title XIX). • SSI is the basic federal safety net program for the elderly, blind, and disabled who have little or no income, providing cash to meet the basic needs of food, clothing, and shelter. While the SSI program is administered by the Social Security Administration, eligibility for SSI benefits is based on qualified disability and financial need, not work history. • Medicaid is also a poverty program, paying for health services and long-term care for qualifying adults and children with disabilities.

Means Tested Programs Medicaid and SSI are “means-tested”, meaning the poorer the person is, the more likely he is to be eligible. • The asset and income eligibility limits for both programs are strict. An individual applying for SSI generally cannot have more than $2,000 in countable assets. See 20 Code of Federal Regulations  416.1205(c). The asset limit for Medicaid is similarly restrictive, but can vary slightly from state to state. In most states, SSI recipients are automatically eligible to receive Medicaid, and it is often access to Medicaid that motivates an individual to apply for SSI. • Providing for a person with special needs often involves structuring ownership of assets and other resources in such a way that they are considered unavailable to that individual and not counted toward the eligibility limit.

Specially drafted trusts, known as Special Needs Trusts or Supplemental Needs Trusts (SNTs) are often used to enable a beneficiary with special needs to enjoy the use of trust property, while still allowing the person to qualify for means-tested public benefits. • SNTs are divided in two broad categories based on the source of the funds that go into the trust. If the funds come from the person with special needs, WWW.TDSN.ORG

it is called a Self-Settled Trust (or “first party” or “payback” trust). If someone else funds the trust, it is called a Third-Party Trust. • The provisions creating a SNT can be put into many types of trusts, including an irrevocable life insurance trust (ILIT) or a testamentary trust.

A person with special needs can acquire assets in many unexpected ways, including through an inheritance or personal injury settlement. The challenge becomes how to structure these funds so that the recipient can use the money without risking disqualification for public benefit programs. Spend Down the Assets If the amount of money is small, it might be possible to spend the assets quickly. • After a person applies for benefits, he has a certain limited time period to spend excess resources. He can prepay for certain services or use money to buy assets that are not counted (“exempt assets”), such as personal and household goods, tuition, home improvements, an automobile, prepaid funeral expenses and burial plots. • He shouldn’t make gifts or transfer assets for less than fair market value. Dong so is considered a “divestment” and could results in disqualification for benefits for a time period.

Self-Settled Special Needs Trust (“Payback Trust”) Assets that are owned by the person with special needs can be transferred to a “first party) or “self settled trust” that will benefit him during his life. Assets in the trust are considered unavailable and are not counted for eligibility purposes. Although the assets come from the special needs individual who is also the trust beneficiary, the self-0settled trust must be established by a parent, grandparent, guardian or court. 42 United States Code (U.S.C.) 1396p(4)(A). The individual, even if competent, is not permitted to establish his own selfsettled trust. Also, he must be under age 65 and have a disability as defined under the Social Security Act. • Disbursements from the trust are generally used to supplement government benefits by paying for items not otherwise being paid for or provided. • A self-settled trust must benefit that individual only. • Any funds remaining in the self-settled trust at the beneficiary’s death must first be tendered to the state to pay back the amount of government NEW PARENT HANDBOOK

assistance (the “payback” provision). • A “Pooled Trust” is a special kind of self-settled trust arrangement established by a non-profit association. 42 U.S.C. 1396p(d)(4)(C). The pooled trust operates as a master trust with separate subtrusts maintained for separate trust beneficiaries. Each sub-trust qualifies as a self-settled trust. • A sub-trust can be established not only by a parent, grandparent, guardian, or court, but also by the beneficiary or his agent under a financial power of attorney. (This is the only type of SNT that can be established by the person with special needs.) • The assets remaining in a sub-trust of a pooled trust at the beneficiary’s death must be tendered to the state to pay back the assistance provided, or in some states, the funds can stay in the master trust for the benefit of other pooled trust beneficiaries.

If parents, grandparents or others transfer assets directly to a person with special needs, this may hurt eligibility. To preserve eligibility, it is generally wiser to create a Third-Party Trust to receive gifts or bequests. Third Party-Special Needs Trust The third-party Special Needs Trust must be created by someone other than other than the beneficiary with special needs, and all contributions must come from someone other than that beneficiary. • The trust can be established during the third party’s lifetime or it can be created at death under a will. If an irrevocable special needs trust is created during lifetime, it can receive gifts or bequest from others too (but not from the special needs beneficiary himself.) • The age of the beneficiary is not a factor in the creation of these trusts. • The trust is established so that the trustee is not required to make distributions to the special needs beneficiary — doing so could reduce eligibility for government benefits — but instead the trustee has discretion over the amount and frequency of trust distributions (and these can be made to pay for goods and services only; distributions of cash are not allowed). • Upon the death of the trust beneficiary, any remaining assets are distributed to the remainder beneficiaries. • There is no “payback” requirement.

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Comparison of Special Needs Trusts Age of beneficiary Can it be revocable? Can it be testamentary? Payback requirement?

Self-Settled 3rd-party Under 65 Any age No Yes No Yes Yes

Choosing a Trustee of a Special Needs Trust • Special Needs Trusts have peculiar and strict rules that the trustee must understand to avoid disqualifying the beneficiary for government benefits. For example, even if a trust is properly drafted and funded, a distribution of cash to the beneficiary is counted as income even if the money is to reimburse for an authorized expense. • If the trustee is an individual (e.g., a parent), the trust document should anticipate the possibility that the trustee might predecease the beneficiary or simply become too old to want to continue as trustee (i.e., it should contain procedures that address trustee resignation and selection of a successor trustee). • Given an SNT’s increased complexity and likelihood that the trust will endure for the beneficiary’s entire life, selecting a corporate trustee (or co-trustee) might be warranted.

Life Insurance in Special Needs Planning • Individuals with special needs are often taken care of by their parents. This might work while the parents are alive, but raises the question of what to do after the parents pass away. • Without parents around as caregivers or as a source of funds, it is often uncertain how the individual with special needs will be able to carry out activities of daily living or pay for professional care. Siblings are often unable to fill the gap. • Life insurance can provide funds at the parent’s death to help pay for caregivers or other resources that can maintain the quality of life for the person with special needs.

Who Should own the policy? • The policyowner should not be the person with special needs (or his revocable trust). • The policyowner could be nearly anyone else, including a parent or a trust. If the owner is an irrevocable trust, the special needs beneficiary should not have a right to withdraw gifts made to the trust (this “Crummey power” is a countable asset, and letting it lapse is a divestment).

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Who Should Be the Beneficiary of the Policy? • It is safest to name a properly drafted Third-party Special Needs Trust as the policy’s beneficiary. This assures that the death proceeds will be available to enhance the quality of life of the individual with special needs, while preserving eligibility for public benefits. • The person with special needs should not be the direct beneficiary of the life insurance, as the death proceeds would be a countable asset. If the beneficiary does receive the death benefit, legal assistance should be obtained to consider putting the funds in a self-settled SNT. • A sibling generally also should not be named beneficiary. The sibling might not use the money for its intended purpose or might have creditors that could attach the funds. Even if the sibling gives the money to the person with special needs, this could render him too wealthy to obtain government benefits.

Medicaid Basics It’s essential to understand that Medicaid rules are complicated and differ from state to state, so it is nearly impossible to give a “one size fits all” answer to most questions. Correspondingly, anyone seeking guidance about Medicaid (including how to qualify) should ultimately obtain the help of his own knowledgeable counsel – often an “elder law” attorney. What is Medicaid? Medicaid is a government funded health care program for the elderly, blind, disabled and certain other designated groups. Medicaid provides the funding for medical services as well as long term care to more than 68 million Americans, including one out of every four children. Medicaid is a federal program, but it is administered by the states. The federal government sets the general standards or criteria and provides matching payments to each state based on that state’s per capita income. Each state administers its own program, often adding its own limits and conditions for eligibility and service. Additionally, states may apply for a waiver to design and operate a program outside the federal guidelines. Because of this flexibility, Medicaid is different in each state, with no two Medicaid programs exactly alike. How is Medicaid different than Medicare? Medicare is a medical insurance program administered by the federal government for individuals who are 65

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and older and who have worked and paid into the Social Security system. It is financed primarily by payroll taxes. If you are under age 5, you can only become eligible for Medicare if you have been receiving Social Security Disability Insurance (SSDI) payments for at least 24 months or meet other limited exceptions. Medicaid is a medical payment program that is, essentially, for poor people. Work history within the Social Security system is not required. Because it is a poverty program, an applicant’s resources (assets) and income must fall below the program’s financial threshold to qualify for assistance. Even though it is a poverty program, however, not all poor people qualify for Medicaid. The applicant must fall within one of the eligible groups. Can someone be on both Medicare and Medicaid? Yes. Medicaid is a major supplement to Medicare. Six million low-income Medicare recipients – roughly 20 percent of the Medicare population – are also on Medicaid. Medicaid is often used to pay Medicare’s Part B premiums and the costs of other services (including co-pays and deductibles) not provided by Medicare. Medicaid is also the main source of payment for long-term care, covering one million nursing home residents and paying for 41 percent of all long-term care expenditures in this country. How does someone qualify for Medicaid? This answer depends on the state. Most Medicaid recipients (about 78 percent) qualify for Medicaid by first qualifying for Supplemental Security Income (SSI). In the majority of states, the elderly and people with disabilities who receive SSI are automatically eligible for Medicaid. Some states have slightly altered the SSI criteria or have established different criteria for eligibility, with federal approval. But in all states, financial eligibility for Medicaid is determined using two tests: • the asset test (generally having less than $2,000 of countable assets; see below), and • the income test

The applicant must meet both tests in order to qualify for Medicaid. As the majority of recipients qualify for Medicaid under the SSI financial limitations, more detail on those eligibility rules is provided below. But each state’s program can vary from the general rules. Your state may allow an applicant to keep more assets, or may impose stricter asset requirements. NEW PARENT HANDBOOK

A child out of sync By Linda King-Thomas, MHS, OTR/L, C/NDT Director Developmental Therapy Associates, Inc.

hildren with Sensory Processing Disorder (SPD) have difficulty organizing sensation effectively to interact with their environment socially, physically and emotionally. We live in a sensory world. All around us are sights, sounds, smells, tastes, touch and movement. The brain has a tremendous task of processing and organizing all this information for us to use when interacting with our environment. This process is called sensory integration. But what if our brains did not discriminate, coordinate and organize sensation effectively? What if being held by your parent was not comforting but felt prickly? What if swinging on the backyard tree swing scared you so much you cried and could not play with your friends? What if you wanted to join the fun at the birthday party but the noise hurt your ears so much you 98

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refused to go into the room? What if you wanted to play the new game with your classmates on the playground but you couldnâ&#x20AC;&#x2122;t figure out how to move your body? These children are experiencing difficulty organizing sensation effectively to interact with their environment socially, physically and emotionally. These are behaviors, which can be observed in children with Sensory Processing Disorder. Dr. Jean Ayres, an occupational therapist, researched the role of sensory systems on learning and behavior. Dr. Ayres estimated that 5-10 percent of the children have sensory processing difficulties. Behavior observation and parent/caregiver/teacher reporting provide valuable diagnostic information for the therapist when identifying Sensory Processing Disorder. Sensory Modulation Disorder is a diagnostic category of SPD. SMD is characterized by difficulty turning sensory messages into controlled behaviors that match the nature and intensity of the sensory information. WWW.TDSN.ORG

When the behavior response does not match the intensity of the sensory information problems arise in maintaining an optimal arousal level for the task at hand resulting in difficulty adapting to challenges in daily life. Several sub-categories have been identified which can occur individually or together. These sub-categories are sensory over-responsivity (a response to sensation which is more intense, quicker, and/or for a longer time), sensory under-responsivity (a slow response to sensation often requiring a high intensity or an increased duration of input to elicit an observable response) and sensory seeking/craving (actively seeking sensation often in ways that are socially unacceptable). Sensory over-responsivity (sometimes called Sensory Defensiveness) is demonstrated by an aversive or avoidance response to ordinary sensation. This affects the sympathetic autonomic nervous system creating a flight, fight or fright response. A child in a flight response may avoid group activities or messy tactile play (sand, shaving cream, mud); may refuse new foods or texture in foods; may avoid eye contact or always wear sunglasses; may cover his ears when hearing loud noises. A child in a fight or fright response may become upset and refuse dressing, bathing, tooth brushing, haircuts; may be afraid of movement, especially backward movement; may over-respond to hugs or physical prompts, especially if unexpected; may find smells ‘yucky’ or offensive. Sensory under-responsivity is demonstrated by a slow and/or diminished response to sensation. A child may appear “out of touch” with his body; may be unaware of messy hands, face or twisted clothing; may bump into walls or knock things over; may not notice visual details; may have difficulty adjusting the volume of his speech. Sensory seeking/craving is demonstrated by actively seeking sensation. A child may touch others too often and/or too hard; mouth or chew non-edible objects (hair, straws, clothing, pencils); may be overactive with bumping and crashing, jumping and running, walking on toes, squeezing or banging objects; may prefer loud noises or talk constantly; may like playing with flashlights, flickering lights and excessive time with video games; may sniff people and objects; may prefer strong and distinct tastes.

unfamiliar actions. It requires ideation, planning, modification and self-monitoring (feedback) for the execution of a task. Both cognitive and motor elements are involved. Children who have problems with the cognitive components of ideation planning and sequencing may have difficulty deciding what to do and how to do it, may have difficulty transferring ideas or images into language or actions for play or school, may have difficulty organizing a series of actions or figuring out how to play a new game. Children who have problems with the motor components may have difficulty smoothly executing gross motor actions with adequate timing and rhythm such as riding a bike and pumping a swing. Children may have difficulty smoothly executing fine motor activities such as cutting, dressing fasteners, shoe tying, opening food wrappers and coloring/writing. Dyspraxia can also have a negative impact on a child’s social relationships. The children may be socially rejected by peers during games due to poor motor skills, demonstrate poor social judgment due to difficulty discerning social and physical boundaries, and may have poor peer interaction due to difficulty reading non-verbal cues. If the behaviors listed above seem to describe a child you know, an evaluation by an occupational therapist with sensory integration training would be beneficial. Intervention includes therapy working with the child as well as the child’s environment. The goal of therapy is to provide the foundation for learning and behavior, which supports the child’s functional performance in play, self-care skills, schoolrelated tasks, and social relationships. Developmental Therapy Associates is a pediatric private practice which provides occupational therapy and speech therapy services. For more information on sensory integration, visit www.developmentaltherapy.com and www.spdfoundation.net

Dyspraxia is another diagnostic category of Sensory Processing Disorder. Dyspraxia involves a difficulty conceptualizing, organizing and executing new or WWW.TDSN.ORG

NEW PARENT HANDBOOK

Sensory integration Compliments of Pediatric Therapy Associates & Sports Medicine

hildren who are experiencing sensory integration dysfunction face each day and each different environment as a challenge. They can take nothing for granted. Most children do not have to think about how bright a room is, how warm or cold the room is, how noisy it is, how busy it is, what it smells like or that there are other children around that provide unpredictable behavior and situations. We don’t stop and think how “sensitive” some children are than others and many of the outward behaviors are often attributed to personality, emotional make-up, or behavioral tendencies. Children with sensory processing issues often have a need to control their environment, because if they are in control there is no unpredictability or 100

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surprises. An inability to process sensory information adequately will affect a child’s learning potential socially, physically, behaviorally, cognitively, psychologically and academically. Individuals who have this condition can, at times, cope with it better than others. Stressors such as fatigue, illness, anxiety and even hunger often seem to make the reaction more severe. Sensory related behaviors usually appear or surface when a child is feeling overwhelmed and can manifest themselves in the following outward behaviors, but the list is not all inclusive: • Avoidance of play interaction with peers in the classroom and on the playground. • Often prefer the company of adults. • Emotional outbursts hitting, crying, yelling etc over what appears to be simple matters such as not finishing work, a dropped toy or material, a peer brushing against or bumping him/her lightly by accident, being asked or directed to do something which the child perceives as difficult or a peer not WWW.TDSN.ORG

sharing when the child feels he/she should. • Appears to be day dreaming, not paying attention, not responding to directions or name being called. • Easily frustrated, low self esteem “I can’t” before even trying, making excuses why they can’t do something (I am sick, tired etc.) • Over reaction to loud or sudden noises.

Other behaviors can include hyperactivity, a very hypoactive child, clinginess, struggles with transitions, tantrums, uncooperative/stubbornness, inability to change routine, and impulsivity. Other behaviors associated sensory integration difficulties • An acute awareness of background noises • Fascination with lights, fans, water, taking things apart and things that spin • Repetitive motions • Walking on tippy-toes • Decreased awareness of pain or temperature • Coordination problems • Unusually high or low activity level • Difficult with transitions or change • Self-injury of aggression • Easily distractible, short attention span • Heightened sensitivity to smells, textures various clothing issues-tags

A sensory child’s behaviors are not always in their control therefore, it is important when disciplining an unwanted behavior to decipher is it pure bad behavior or is it behavior from the child’s inability to process sensory stimuli appropriately. To discipline a child’s behavior that is out of their control and a result of them already being stressed out, puts a negative connotation and increases the stress. It will most likely result in more behavioral episodes within the day. Reward programs used in schools and at home are great to help children identify appropriate behavior and the realization when they have pushed limits. It is just as important to help sensory children to identify when a situation is too over whelming and the appropriate ways to neutralize the situation verses acting out with negative behavior. The complement to using “time outs” for bad behavior that is controllable would be to offer the child “quiet time.” Acknowledge their feelings “I know your mad” WWW.TDSN.ORG

and discussing with the child the behavior “hitting is not nice” and then provide them with an out to calm down, “quiet time”. Quiet time area can be a reading corner or isolated area that allows a child to get away from the innocuous stimuli and calm down. Sensory Processing Sensory Integration is the neurological process by which sensation (such as from the skin, eyes, joints, gravity and movement receptors) is organized for use. Visual System The visual system allows one the ability to interpret and understand visual stimuli. Auditory System The auditory system allows us the ability to interpret what we hear and filter out the unnecessary sounds. Vestibular System The vestibular sense provides information related to head position and movement. The receptors of this system respond to gravity and motion, especially change of direction. This sensory system develops early and is related to functions such as balance, equilibrium responses, muscle tone, coordination of eye and head movements, ability to use both sides of ones body and making postural adjustments. Postural adjustments are small background movements made by the body to allow a task such as reaching for something, to be accomplished more efficiently. Generally these movements are made automatically without thinking about them. Proprioceptive System Awareness of body position is called proprioception. Receptors located in the muscles and joints sense the position of the body and then send this information to the brain. This information tells us where our body parts are and help us to plan out movements. This system is activated through push/pull type activities and activities that provide resistance and involve weight, deep pressure and/or firm touch. This kind of sensation is often calming to a child and may be helpful to a child who becomes easily disorganized. When one’s proprioceptive system fails to work, as it should, a child will have to consciously pay attention to things that should happen automatically. Conscious planning and executing these adjustments requires a lot of energy that most individuals can save for higher-level NEW PARENT HANDBOOK

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not bothered by. Common signs of tactile defensiveness include sensitivity to certain types of clothes or fabrics, preference or aversion to foods which seems texture related, avoidance of touching substances such as finger paint, mud or of getting one’s hands “messy, avoidance of walking barefoot on a particular surfaces such as sand or grass, a greater than normal resistance to having teeth brushed, hair combed or face washed, and a tendency to prefer to touch rather than be touched, especially when the touching is unexpected (as in approaching the individual from behind). Because we do not usually think much about our sense of touch or that some people are more “sensitive” that others, many of these behaviors are often attributed to personality, emotional make-up, or behavioral tendencies. However, enough cases of tactile defensiveness have now been documented for us to be confident that this is truly a neurological based condition which can create a great deal of discomfort and even turmoil for the individual who experiences it and their families. tasks. For these reasons, a child with poor proprioception often feels clumsy, frustrated and even fearful (for example it may be very scary to walk down stairs if you are not sure where your feet are). Tactile System One important role of our touch system is its protective function. Our tactile sense alerts us when something is sharp, hot, cold, or in some other way may present a danger. We learn to “notice” those things, which may represent harm or danger and we then respond by moving away from them. For some individuals, however, the aspect of the touch system that distinguishes between potentially harmful and harmless “messages” does not work normally. Occasionally children have an under active sense of touch. These children do not seem to feel pain as much as others and often seem unaware of tactile sensations that should be noticeable. More common, however, is a condition of inconsistent responsibility or hypersensitivity to touch. Dr. A. Jean Ayres described this as tactile defensiveness.

Our sense of touch is closely tied to our emotions. Perceiving frequent discomfort through this sensory system is likely to make and individuals demonstrate emotionally potent reactions. Thus children who experience this condition are often described as irritable, withdrawn, weepy, angry, etc. It is also difficult to pay attention if a person is thinking about how his clothes feel, or how much it bothered him when someone brushes against his skin in line. Individuals who have this condition can cope with it better at some times than others. Stresses such as fatigue, illness, anxiety and even hunger often seem to make the defensive reaction more severe. Sensory Modulation Sensory modulation is how one’s body takes in external stimuli and processes it for use. When a child’s body is not able to modulate efficiently you may see over or under registration of the stimuli. This is seen in outward emotional behaviors, talking too loud, an aggressive child or one that becomes very withdrawn, and one that is sensitive to sounds and/or textures.

An individual with hypersensitivity to touch or tactile defensiveness appears to overreact to sensations that most people do not particularly notice, or at least are 102

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Working with professionals Reprinted with permission from: NICHCY News Digest, Second Edition #ND20, February 1997

arent Cory Moore, speaking directly to professionals, writes, “We need respect, we need to have our contribution valued. We need to participate, not merely be involved. It is, after all, the parent who knew the child first and who knows the child best. Our relationship with our sons and daughters is personal and spans a lifetime.” Recognizing the central role of the family in a child’s life, many service systems now rovide assistance to parents and other family members using what is known as family centered support principles. Within this philosophy, the family’s influence is recognized as primary, both because of its direct impact on the child’s development and because the family serves as the link between the child and the outside world. Thus, you have the right to be fully informed and WWW.TDSN.ORG

involved in decisions affecting your child and family. Many of the books listed throughout this News Digest offer insight into how you might work together with professionals for the benefit of your child and family. The best relationships are characterized by mutual respect, trust, and openness, where both you and the professional exchange information and ideas about the best care, medical intervention, or educational program for your child. Information also must be exchanged about the needs of your family and about ways to take advantage of helping patterns that already exist within the family. Both you and the professional need to speak clearly about issues and listen carefully. Indeed, both of you have important expertise to share. You, for example, have intimate knowledge of your child with special needs; you live with and observe your son or daughter on a daily basis and can contribute invaluable information about his or her routine, NEW PARENT HANDBOOK

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development, history, strengths, weaknesses, and so on. To make an accurate diagnosis, determine appropriate therapy or other interventions, and understand both your child and the needs and resources of your family, the professional needs your perspective and unique insight. The professional, too, has specialized knowledge to contribute — that of his or her discipline. Often you must rely upon the judgment of the professional in matters that are critical to the well-being of your child, a position that may make you feel on unequal and uncertain footing. How comfortable you feel with the professional, how well you feel that individual relates to your child, and how openly he or she responds to your concerns and input will, in many cases, determine whether you continue to work with the professional or decide to seek the services of another. Thus, there should be a mutuality in the parent/ professional relationship. Both parents and professionals need to trust and feel trusted, both need to admit when they do not know or are wrong, and both need to negotiate with each other (Finston, 1990). Trust, respect, and open communication between parent and professional are, therefore, essential to building a good, working relationship. This can take time to develop and may require effort from both parties. To that end, many parent writers suggest: If you are looking for a specialist with whom you can work well, ask other parents of children with disabilities. Often, they can suggest the name of a good speech or physical therapist, doctor, dentist, surgeon, and so on. • If you don”t understand the terminology a professional uses, ask questions. Say, What do you mean by that? We don”t understand.” • If necessary, write down the professional’s answers. This is particularly useful in medical situations when a medication or therapy is to be administered. • Learn as much as you can about your child’s disability. This will assist you with your child, and it can help you participate most fully in the team process. • Prepare for visits to the doctor, therapist, or school by writing down a list of the questions or concerns you would like to discuss with the professional. • Keep a notebook in which you write down information concerning your special needs child. This can include your child’s medical history, test 104

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results, observations about behavior or symptoms that will help the professional do his or her job, and so on. (A loose-leaf notebook is easy to maintain and add information to.) • If you don’t agree with a professional’s recommendations, say so. Be as specific as you can about why you don’t agree. • Do whatever informed “shopping around” and “doctor-hopping” is necessary to feel certain you have explored every possibility and potential. As Irving Dickman says, “Shop. Hop. Hope.” • Measure a professional’s recommendations for home treatment programs or other interventions against your own schedule, finances, and other commitments. You may not be able to follow all advice or take on one more thing, feeling as Helen Featherstone did when she wrote, “What am I supposed to give up?...There is no time in my life that hasn’t been spoken for, and for every fifteenminute activity that has been added, one has to be taken away.” Peggy Finston points out that “most professionals won’t be familiar with the sum total of our obligations and will not take it upon themselves to give us permission to quit. This is up to us. It’s in our power to make the decision” (p. 188). In conclusion, it is important that the parent/ professional relationship empower the parent to be a full participant in information-gathering, information-sharing, and in decision-making.

However, it is ultimately up to you to decide what role(s) you want to take in this process and what role(s) you need help with. It is helpful to know that families do, indeed, choose different roles in relationship to professionals. Some parents want to allow professionals to make most decisions about their child, others want to serve as an informant to the professional, some want veto power, and some parents want a shared role in the intervention with their child. You are also free to change your mind about the role or level of involvement you may want or be able to assume regarding your child’s services. You may find that you choose different roles at different times for different purposes. Be as direct as possible about what you want or don’t want to take on in this regard. Addressing Financial Concerns The expenses associated with raising children can stretch a family’s resources. When a child has a disability, particularly one that involves high-priced medical care, a family can quickly become overwhelmed financially. WWW.TDSN.ORG

While it is often difficult to resolve financial concerns completely, there are a number of things parents can do that may help. Charlotte Thompson recommends that, as soon as parents find out that their child has a disability, two actions should be taken immediately. These are: • Start a program to organize and manage your new financial demands. “This not only means management of everyday money, but it also means keeping very careful track of your medical bills and payments.” There are a number of money management guides available that explain how to do this. • Seek information about any and all financial assistance programs. “If the state agency caring for handicapped children is contacted immediately, it may be able to assume financial responsibility for your child’s care right from the start.”

Often, so much attention is focused on the provision of health care that doctors and other medical staff may not mention available sources of financial aid. Many states have passed legislation intended to help families of children with a disability address their financial concerns, but parents will need to be “well focused and persistent” to get the answers they need. Many children with disabilities are eligible to receive Supplemental Security Income benefits, based upon their disability. A recent Supreme Court decision (Sullivan v. Zebley) has created changes in the eligibility requirements for these benefits. Because of these changes, many more children are now eligible than in the past. Some children who formerly were denied benefits (i.e., after Jan. 1) may even be eligible for back benefits. Therefore, it is a good idea for all families with a child who is blind or who has a disability to apply for SSI. If a child is found eligible for SSI, he or she is automatically eligible for Medicaid benefits, even if the family income is higher than what is traditionally required for Medicaid in that state. This is very important for children with disabilities who may have many medical needs. If your child qualifies for Medicaid, most early intervention services can be paid for by Medicaid. If your child qualifies for Medicaid, it is important to have him or her assessed by a provider qualified to perform the Early Periodic Screening, Diagnostic, and Treatment (EPSDT) program. If an EPSDT program determines that your child has a condition that requires treatment

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because of “medical necessity,” then it can be paid for by Medicaid.Furthermore, each state has a “Child Find” system, which is responsible for locating and assessing children with disabilities. This is required to be free by Federal law. But sometimes, even though there is not supposed to be a waiting list, it can take a long time to get your child assessed. Therefore, it is important to know about what other resources can be used to get help for your child. Private insurance benefits are one such resource. Usually, nursing, physical therapy, psychological services, and nutrition services can be reimbursed by private insurance. In some cases, occupational therapy and speech therapy are also reimbursable. Educational expenses related to a child’s disability are only rarely covered by insurance. However, it is useful to keep track of educational expenses, because these are deductible on your Federal income tax returns. Some additional resources to contact in your search for financial assistance include: • • • • • •

Hospital social workers Public health department Public health nurses Volunteer agencies Disability organizations State government agencies (usually listed under “State Government” in the telephone book), particularly those departments that oversee programs for children with disabilities

Because searching for assistance may involve a lot of telephone calls, it is a good idea to have paper and pen at hand to record the names and telephone numbers of all those you contact, as well as any referrals they give you. Whether or not you believe your income is too high for your family to quality for financial aid: “...the key is to keep trying — to get more information, to follow up leads, and to continue applying for various types of financial assistance. This may seem like an endless paperwork maze to you, but with luck some of the paper at the end will be the green kind that can help you pay your child’s medical bills. Keep at it.” Future Planning It is not possible for parents to imagine all the stops and detours that they will make as their unexpected journey takes them into the future. But you will probably be thinking at different times about what NEW PARENT HANDBOOK

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the future holds for your child. Advocates believe it is important for parents to have expectations about what their child with disabilities can achieve in the future and to encourage their child to develop as much independence as possible, given the nature and severity of the disability. Over the past several years, the options for children and adults with disabilities have greatly expanded. Schools have developed specialized educational techniques to promote learning and the acquisition of functional skills that will enable individuals with disabilities to have choices about where they live, work, and play, and who they have as friends. The movement to include individuals with disabilities in the mainstream of school life is growing, with significant pressure coming from parents. The premise behind inclusion is that individuals with disabilities should not be segregated but, rather, should have the same opportunities that individuals without disabilities have -- that is, the same opportunities to go to neighborhood schools, to be educated alongside their nondisabled peers, to participate as fully as possible in school activities. However, for inclusion to work, school systems must provide each student with supports appropriate to his or her needs. Support, training, and technical assistance also must be made available to teachers and to nondisabled peers. Therefore, it is important for parents to be aware of how inclusion decisions are made in regard to their child and to advocate for supports they feel their child, his or her teacher, and the peer group need in order for the inclusive setting to be a successful one. Inclusion, however, means more than just including students with disabilities in mainstream school activities. Students will grow up, leave the school setting. What does the future hold for them as adults? This is, naturally, of great concern to parents, disability advocates, disability organizations, and persons with disabilities themselves. For far too long, students have exited the school years to an adult life that lacked opportunities for employment, further education, or community participation. Now, with the help of federal legislation and the advocacy of many concerned parties, adult life for individuals with disabilities holds increasing promise. The Individuals with Disabilities Education Act (IDEA) now requires that school personnel, parents, and each 106

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student with disabilities (16 years of age or older, and, in many cases, younger) plan for the student’s transition from school to post- school environments, including employment, additional education or training, independent living, and community participation. This legislation is intended to prepare youth with disabilities for the adult world and roles they will encounter upon leaving high school, with the purpose of maximizing their participation in the mainstream of society. Furthermore, the Americans with Disabilities Act has incorporated into law provisions that guarantee many of inclusion’s principles as individual rights. No longer may most child care centers refuse to serve children because they have a disability. No longer may a qualified individual be denied employment because he or she has a disability. Public accommodations must now be accessible to all individuals. Many states have been working actively to establish community-based supports so that individuals with disabilities can lead their lives as independently as possible. • Therefore, when you contemplate the future of your son or daughter with disabilities anddevelop goals for that child, it may be helpful to consider the following suggestions: • Ensure that your child has the opportunity to acquire skills now that will make him or her as independent as possible in the future. • Ensure that your child has opportunities to develop social skills that can be used in a variety of settings (regular classroom settings and exposure to many different environments are useful in this regard). • Write a will that will provide for your child’s care and safeguard his or her eligibility for government benefits. (For more information about estate planning, request a copy of Estate Planning from NICHCY.) Some states now provide for self-sufficiency trusts which allow parents to leave money to a child with a disability without disqualifying that child (even of adult age) from government benefits. Other states require that a special needs trust be established. • Teach your child to be responsible for his or her own personal needs (e.g., self-care, household chores). • Work with the school and other agencies to ensure that transition planning for your son or daughter takes place and addresses training for future employment, coordination with adult service providers, investigating postsecondary education or training, and participation in community activities. • Help your child develop self-determination and self-

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advocacy skills. • Explore different possibilities for living arrangements once your son or daughter is grown.

Summary In this News Digest, we have looked at many of the issues facing you as parents of a child with a disability. Learning that your child has a disability or illness is just the beginning of the journey. At times, you may feel overwhelmed by the challenges associated with disability and by the strength of your own emotions. And while you may feel alone and isolated, there are many supports available. Other parents can be invaluable sources of help and information. Services are also available — early intervention services for young children, educational services for school-aged children, services available through public agencies that can assist your entire family. Having access to information and supports may be critical in maintaining a stable and healthy family life. To this end, we urge you to read, to talk to other parents who have a child with a disability, to talk with WWW.TDSN.ORG

each other and with other family members, and to reach out for assistance when you need it. We conclude with the words of Clare Claiborne Park, as she reflects upon the experience and emotions of being a parent of a child with disabilities. “This experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson of Sophocles and Shakespeare — that one grows by suffering. And that too is Jessy’s gift. I write now what fifteen years past I would still not have thought possible to write; that if today I was given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands — because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.”

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ADVICE & RESOURCES

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o parent wants his or her child to be sick, disabled, or harmed in any way. It is not an experience anyone expects to have; rather, it is a journey that is unplanned. The terrain families must travel is often rough in places. And yet, the majority of families are able to find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges that may accompany their childâ&#x20AC;&#x2122;s illness or disability. WWW.TDSN.ORG

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The unplanned journey By Carole Brown, Samara Goodman and Lisa Küpper Originally published 1992; Updated, 2010

he birth of a child with a disability, or the discovery that a child has a disability, can have profound effects on the family. In “You are Not Alone,” Patricia McGill Smith offers the insights that she and others have gained through their own experience of having a child with a disability. In this article, we will provide additional information to support the life cycle, health, and well-being of the family when a member has a disability. It is with a great deal of humility that we are even attempting to describe what the future may hold for you and your family. On the one hand, we want you to be as prepared as possible so you can negotiate the challenges that may await your family. On the other hand, we recognize that individual variation and differences are the rule when a child has a disability. Researchers often base their findings on group data—what happens to the majority of 110

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people in a circumstance. However, what might be “true” in a research sense may not be at all true for your family. Therefore, while we hope this article will guide you to sources that are helpful, take from our discussion only what you need. The Journey Growth is endless and our lives change and change us beyond anticipation. I do not forget the pain — it aches in a particular way when I look at Jessy’s friends (her paid companions), some of them just her age, and allow myself for a moment to think of all she cannot be. But we cannot sift experience and take only the part that does not hurt us. No parent wants his or her child to be sick, disabled, or harmed in any way. It is not an experience anyone expects to have; rather, it is a journey that is unplanned. The terrain families must travel is often rough in places. And yet, the majority of families are able to find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges that may accompany WWW.TDSN.ORG

their child’s illness or disability. Many parents have described the progression — and pendulum — of feelings they experienced upon learning that their child has an illness or a disability. Patty McGill Smith touched upon many of these emotions in her article — shock, denial, grief, guilt, anger, confusion. The type of emotions parents experience, as intense and overwhelming as they may be, are also normal and acceptable. Stability does return, both to the individual and to the family. Parents begin to search for needed information. Many report feelings of personal growth that are often, in retrospect, astounding to them. One mother, reflecting on life after the birth of a child with spina bifida and other disabilities, says: I have learned, and grown, more since Dylan’s birth than any other time in my life. You learn patience, and you get to witness miracles that you otherwise would have been too busy to have noticed… You learn acceptance, you realize you have been wrong to judge, and you learn that there is a thing called unconditional love. Taken together, the many suggestions and insights offered by parents who have lived for years with the experience of disability in the family can provide parents who are new to the experience with much guidance and support. The remainder of this article will outline many of the ways that parents have helped themselves and those they love adjust to living with and caring for a child with special needs. Access Information and Services One of the first things you can do that may prove enormously helpful, now and in the future, is to collect information — information about your child’s disability, about the services that are available, and about the specific things you can do to help your child develop to the fullest extent possible. Collecting and using the information available on disability issues is a critical part of being a parent of a child with special needs. Fortunately, there is a great deal of information available on many disabilities and many disability issues. Join a Group Much of the information that will be helpful to you is in the hands, heads, and hearts of other parents like yourself. For this reason, it is worthwhile to join a parent’s group. Some groups are organized around one particular disability (e.g., cerebral palsy, Tourette syndrome, Down syndrome), while other groups draw together parents who, irrespective of the disabilities of their children, have WWW.TDSN.ORG

similar concerns, such as daycare, transportation, coping, or finding out about and supporting special education in their community. Within each of these groups, information, emotional and practical support, and common concerns can be shared. The power of this mutual sharing to combat feelings of isolation, confusion, and stress is a consistent thread running throughout the literature written by and for parents. Our children had Down syndrome, seizure disorder, holes in the heart, premature birth, deafness, and cerebral palsy. I hated the repeat surgeries, but one mother wished her child had a condition that doctors could fix. I struggled with how to respond to strangers, but another mother wanted her child’s condition to be visibly obvious so strangers would understand why she wasn’t doing what other six-month-old babies did..It was powerful to simply congregate with other mothers whose babies had special needs, hear the variation in stories, see the experience refracted through the crystal of multiple identities. Parent groups aren’t only for mothers, though. Don Meyer writes of running “fathers-only” workshops where fathers came together to exchange insights and trade war stories. Often the din of the conversation was such that we were asked “to keep it down” by presenters in neighboring rooms. Fathers became so involved in talking to their peers that we sometimes needed to shoo them out of the room at the end of the meetings… All this from fathers who “don’t say anything.” Clearly these men have much to say, and much to offer one another. There are many ways to identify a parent group in your area. A good starting place is the NICHCY State Organizations Search, which can help you identify groups in your state. The state parent training and information (PTI) center (which is listed in NICHCY’s State Organizations Search) is also a good resource. Look under the category “Organizations Especially for Parents.” Read Books Written by (and for) Parents You may also find it helpful to read many of the excellent resources — books, articles, Web sites — that are available on disability issues. Some are quoted in this publication. Others are listed on our disability fact sheets. Worthwhile suggestions about what to read can come as well from talking to a local librarian, your child’s teacher, or other involved professional; contacting a national, state, or local disability group; or talking to other parents of children with disabilities.

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Find Out About Services

for programs for infants and toddlers with disabilities.

The search for available services is a challenge for families and one that continues as the child’s needs change. Most of these services are made available because of legislation at the federal and state levels. For a quick read on the educational rights of children and youth with disabilities, NICHCY offers Questions Often Asked by Parents about Special Education Services.

Special education and related services. Through the mandates of two federal laws — the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973—each eligible child with special needs is guaranteed a free appropriate public education designed to address his or her unique needs. This education is planned by a team, including the parents of the child.

Typically, there are many services available within communities, districts, and states to assist you in meeting the needs of your child with disabilities and your family. Families with a young child with disabilities (birth through the third birthday) should access early intervention services, which are designed to identify and treat developmental problems as early as possible. For school-aged children with disabilities, special education and related services can be important factors in addressing a child’s educational needs.

Thus, as parents, you are key participants in the team that determines what type of special education your child will receive. Together, the members of your child’s team develop an Individualized Education Program (IEP), which states in writing the educational program that is planned for your son or daughter.

Early intervention services. Early intervention services are designed to address the needs of infants and toddlers with disabilities as early as possible. These services can range from feeding support from a nutritionist in a hospital to developing a complete physical therapy program for an infant with cerebral palsy. However, these services are not just for the child with special needs. When framing the law describing early intervention services, Congress recognized that families are central in a young child’s life. Therefore, the family’s priorities, concerns, and resources are a major consideration when planning services for infants and toddlers with disabilities. The plan that is developed through this process is called an Individualized Family Service Plan . Parents, too, can benefit from early intervention services. As full members of the team developing the program for their child, they can learn skills that may be useful for a long time — skills in helping their child learn and develop, as well as skills in decision-making, planning, being of support to others, and influencing policy-making in their community. The services themselves are offered through a public or private agency and are provided in different settings, such as your home, a clinic, a neighborhood daycare center or Head Start program, a hospital, or the local health department. Initial evaluation and assessment of your child will be provided free of charge. Services may also be provided at no cost, although this may vary from state to state. Some states charge a “sliding-scale” fee for services. The NICHCY State Organizations Search identifies the name and telephone number of your state’s contact person 112

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There are many books and websites that are particularly useful if you are seeking to understand and access special education services. This includes the material immediately available here at NICHCY to explain the special education process. We’ve listed a few webpages you might like to read to learn more.

Supporting and Empowering Family You’re the heart of the family Many factors can influence the well-being of a family. One factor is certainly the emotional and physical health of the parents. You, as parents, are definitely the heart of the family. You are the ones who deal with the issues associated with your child’s disability — doctors, child care providers, family members, your child’s school, the professionals who work with your child. You also maintain the household — working to pay the bills, shopping, cooking, cleaning up, taking care of other children. Is it any wonder that many parents of children with disabilities report times of feeling overwhelmed? Therefore, it is very important for you, as parents, to take some time to care for yourselves as individuals: getting enough sleep, eating regular meals, taking a short walk, and doing the things that you really enjoy, even if you can only squeeze them in occasionally. As one mother relates: I would sometimes retreat to my “tower” and pretend that I had no responsibilities other than to amuse myself with a good book or a soothing tape. The respite usually didn’t last more than a half hour, and it was never enough, but it helped me break the “martyr” pattern of thinking I was required to live and breathe only for my children. In those brief moments of quiet reflection I could renew WWW.TDSN.ORG

do not always have to revolve around the children in the family. Finding other topics to discuss can do much to revitalize parents and preserve intimacy between them. It is also important to recognize that there are times when one partner needs to have space. As one parent puts it, “Realize that you do not deal with this stress in the same way your spouse does. Let your spouse deal with it in their own way, and try to come to an understanding of your differences.” Another parent shares, “At these lonely moments, the greatest gift was simply to let the other be.”

my sense of self and remember that I was important, too; that I was Kate, a person, with lots of abilities and interests that did not all coincide with my role as Mommy. I came to realize that a little selfishness is not a bad thing. If I could enjoy myself more, I could enjoy my children more. Many families will be single-parent families, but for those who are not, the relationship between the parents is a factor that can influence the family’s well-being. When the parents’ relationship is a strong and supportive one, it enriches family life for all members. Conversely, when there are problems in the relationship, the tension affects the rest of the family as well. This is stating what most of us already know — that marriages undergo change with the birth of a child, any child. But when a child in the family has special needs, this change may be even more profound. As Kelly Harland puts it, “[H]ow unexpectedly it all unfolds. One moment, you and your lover are singing along in bad Italian with Venetians in a crowded bar…red wine pouring out of nowhere. And the next minute, the two of you are filling out disability forms for your tiny son.” Much of the literature written by parents discusses ways for parents to protect their relationship. One point emerges again and again, and that is the importance of making time for each other: meeting for lunch, getting away for a few hours together, sharing an activity. Talking to each other and really listening are also important — and conversations WWW.TDSN.ORG

Sharing the duties of providing care is also necessary, although couples report that they often have to work hard at communicating in order to achieve the “we-ness” that goes behind teamwork. Many parents have found it is necessary and helpful to seek joint counseling. Through this process, they grew to understand each other’s needs and concerns more fully and found ways of discussing and resolving their differences. As one parent says, “We steer a rocky ship, my husband and I…We have had to check in with the therapist, sometimes once a year, sometimes once a week. We’ve experienced a hard distance between one another from time to time, as Will in all his complexity takes over every spare second of our lives. We have hung on, though. Our hearts are bonded by something that goes even deeper than love.” Brothers and Sisters We know from the experiences of families and the findings of research that having a child with a disability powerfully affects everyone in the family. This includes that child’s brothers and sisters. Many authors and researchers have written with eloquence about how the presence of a disability affects each sibling individually, as well as the relationships between siblings. The impact, according to the siblings themselves, varies considerably from person to person. Yet there are common threads that run through their stories. (10) For many, the experience is a positive, enriching one that teaches them to accept other people as they are. Some become deeply involved in helping parents care for the child with a disability. It is not uncommon for siblings to become ardent protectors and supporters of their brother or sister with special needs or to experience feelings of great joy in watching him or her achieve even the smallest gain in learning or development. Megan, age 17, says of her life with her brother who has Down syndrome: Every day Andy teaches me to never give up. He knows he is different, but he doesn’t focus on that. He doesn’t give up, and every time I see him having a hard time, I make NEW PARENT HANDBOOK

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myself work that much harder…I don’t know what I would do without Andy. He changed my life…If I had not grown up with him, I would have less understanding, patience, and compassion for people. He shows us that anyone can do anything. In contrast, many siblings experience feelings of bitterness and resentment towards their parents or the brother or sister with a disability. They may feel jealous, neglected, or rejected as they watch most of their parents’ energy, attention, money, and psychological support flow to the child with special needs. (12) As Angela, age 8, puts it, “[T] here are times when I sit down and think, ‘It’s not fair!’” And many, many siblings swing back and forth between positive and negative emotions. Helen, age 10, whose sister has severe intellectual disabilities and seizures, begins by saying that she’s glad to have a sister with special needs. “It has opened my eyes to a world of people I never would have known about.” But she also says, “Sometimes I wish I had special needs. I think that a lot when Martha gets ooohed and aahed over and nobody even thinks about me.” And then in the next breath, Helen says, “Another thing is that it really makes me mad when kids slap their chest with their hands and go, ‘I’m a retard!’ It made me so mad!” The reaction and adjustment of siblings to a brother or sister with a disability may also vary depending upon their ages and developmental levels. The younger the nondisabled sibling is, the more difficult it may be for him or her to understand the situation and to interpret events realistically. Younger children may be confused about the nature of the disability, including what caused it. They may feel that they themselves are to blame or may worry about “catching” the disability. As siblings mature, their understanding of the disability matures as well, but new concerns may emerge. They may worry about the future of their brother or sister, about how their peers will react to their sibling, or about whether or not they themselves can pass the disability along to their own children. Clearly, it is important for you to take time to talk openly about your child’s disability with your other children, explaining it as best you can in terms that are appropriate to each child’s developmental level. As Robert Naseef remarks, “Just as parents need information, so do siblings, on their level.” If you’re concerned about sibling issues, let NICHCY put you in touch with resources that can help you open up the lines of communication and address the needs of your nondisabled children. You may also find there is a support group available to your children, which can provide an 114

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“excellent outlet” for siblings to share their feelings with others in a similar situation. The Internet also offers amazing possibilities for connection sharing. Your Child with Special Needs Much of how you raise your child with a disability will depend on your family’s personal beliefs about childrearing, your child’s age, and the nature of his or her disability. An important point to remember is that most of the regular child-raising issues will apply — children with disabilities will go through the usual childhood stages. They may not go through stages at the same age, at the same rate, or use the same words as children without disabilities, but they are children and kids are kids. We, as parents, may believe that all children should be treated the same, but in practice that is usually not the case. Why? Because anyone who has been around children, even infants, knows they have different personalities and react differently to similar situations. We encourage and coax the shy child and set limits for the rambunctious one. We tell the loud ones to be quiet and the quiet ones to speak up. We offer different activities to the child who loves to paint than to the one who wants to play ball. Children just are not the same — but they should have the same WWW.TDSN.ORG

opportunities. Among their opportunities should be the chance to assume increasingly greater degrees of responsibility and independence. There may be many ways in which your child can help himself or herself or other members of the family, including doing chores around the house. You will need to consider what these activities might be, given your son or daughter’s disabilities and capabilities. As you expect and encourage your child to assume responsibility, his or her sense of pride and competence will also increase. Conversely, to not expect or encourage your child to contribute to self-care or household matters may send the message that he or she is not capable of helping. Dependence is fostered instead. As one mother insists, “Let him do things for himself. Don’t baby him. My father-in-law noticed how Chrissy can manipulate people very well…[His] comment was, ‘Boy, he wouldn’t walk anywhere if he could find someone to carry him all over.’ Yup. That’s why we don’t carry him!” Of course, the nature and severity of your child’s disability may affect how much he or she is able to participate in household duties and so on. Peggy Finston remarks: The issue, then, for each of us is what is a “realistic” amount of normality to expect from our child? If we expect too much, we run the risk of rejecting him as he is. If we expect too little, we will fail to encourage him to do the most he can with himself. There is no one answer for all of us, or even for all of us dealing with the same condition. The best we can do is to realize that this is an ongoing question that we need to consider. Another issue that may concern you is what (or whether) to tell your child about his or her disability. As with siblings, the child with special needs may also have a need for information and perspective about what makes him or her different. Now my hug becomes tighter, closer. I feel my breath in his tousled hair. “Will, do you ever wonder why you get so scared when something comes out of the blue, why it upsets you so much?” He sniffles. “Yeah.” I hesitate. I’m feeling terribly warm. I never wanted to introduce my child to the label someone else created for him. And yet an instinct tells me it may help him…. This is how Kelly Harland describes the conversation she had with her son when she told him about his disability, WWW.TDSN.ORG

autism. And now he’s still. He has calmed down. He’s listening. … And silence, as I try to imagine where to go next. Maybe I’m all wrong. Maybe I should never have used that word. But an odd rush comes over me. It feels like, with this tentative back-and-forth, we’ve suddenly crashed through some floodgate… Has Will known for awhile that he has a problem; has he been waiting for his mom to explain it to him? There is in all this talk something for both of us to hold onto, maybe in this one moment a way to quell the terror, or even rise above it. As your child grows and matures and especially as he or she edges into young adulthood, it may be very helpful for him or her to be able to discuss the nature of the disability. This includes what special accommodations he or she needs in order to succeed in school and other settings. You may wish to involve your child in his or her own IEP meeting, which can teach your child useful skills like self-advocacy, expressing personal interests and goals, and being involved in making decisions that affect his or her life. In fact, by law, whenever your child’s transition to life after high school is going to be discussed at an IEP meeting, your child must be invited to attend the meeting. To learn more about transition planning and student involvement in IEP meetings, visit NICHCY’s Transition Suite, which begins at: http://www.nichcy.org/schoolage/ transitionadult/ Grandparents (and the Rest of the Family) Grandparents are often greatly affected by the birth of a child with a disability. “They face the double grief of their grandchild’s disability and their own child’s pain.”(24) It is important to remember that they will need support and information, too. (This is true for other members of the family as well.) Therefore, your parents and other members of the extended family need to be given opportunities to get to know your child as a person and not just a person with disabilities. Help them to understand your child’s strengths and needs, help them to accept him or her as part of the family. Allowing family members to become involved with your child may also allow you some much-needed time away from the responsibilities associated with caring for a child with special needs. Care Givers All parents, at some time, will probably seek child care. For families with a child who needs more supervision or specialized assistance, child care may be difficult to find —

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or feel comfortable with. However, even if you do not work outside the home and do not need regular child care, you may benefit greatly from having child care on a periodic or even an ongoing basis. This will give you time to take care of personal matters, enjoy some leisure activity, or be relieved of the constant need to care for a child with a disability or chronic illness. You may also benefit from respite care, a system of temporary child care provided by people familiar with the needs of children with disabilities. “Temporary” can range from an hour to several months, depending on the respite care provider and the needs and desires of the family. Many respite care providers have undergone specialized training and can knowledgeably care for children whose needs may range from close supervision to medical care. Respite care can be provided to infants, teenagers, or adults with special needs. In some cases, the respite provider may be able to provide care only for the child with the disability; in other cases, care may be available for siblings as well. Respite care generally differs from daycare in that it is not available on a daily basis to allow a parent to return to the work force.

Working with Professionals Over 20 years ago, parent Cory Moore, speaking directly to professionals, wrote: We need respect, we need to have our contribution valued. We need to participate, not merely be involved. It is, after all, the parent who knew the child first and who knows the child best. Our relationship with our sons and daughters is personal and spans a lifetime. This sentiment echoes throughout the parent literature and in the hearts of parents everywhere. Not surprisingly, many of the materials written by parents for other parents offer insight into how you might work together with professionals for the benefit of your child and family. The best relationships are characterized by mutual respect, trust, and openness, where both you and the professional exchange information and ideas about the best care, medical intervention, or educational program for your child. Both you and the professional need to speak clearly about issues and listen carefully. Indeed, both of you have important expertise to share.

To find out more about respite services, contact the ARCH National Respite Network and Resource Center. ARCH operates the National Respite Locator Service whose mission is to help parents locate respite care services in their area. Visit at: http://www.archrespite.org.

You, for example, have intimate knowledge of your child with special needs. You live with and observe your son or daughter on a daily basis and can contribute invaluable information about his or her routine, development, history, strengths, needs, and so on.

Although many parents initially may feel reluctant to leave their child with special needs in the care of someone else, those who have tried it give ample testimony to its value in restoring their energy, sense of humor, and perspective.

The professional, too, has specialized knowledge to contribute — that of his or her discipline. Often you must rely upon the professional’s judgment in matters that are critical to the well-being of your child. Thus, there should be a mutuality in the parent/ professional relationship. This can take time to develop and may require effort from both parties. To that end, many parent writers suggest: If you are looking for a specialist with whom you can work well, ask other parents of children with disabilities. Often, they can recommend a good speech or physical therapist, doctor, dentist, or surgeon. • If you don’t understand the terminology a professional uses, ask questions. Say, “What do you mean by that? We don’t understand.” • If necessary, write down the professional’s answers. This is particularly useful in medical situations when a medication or therapy is to be administered. • Learn as much as you can about your child’s disability. This will assist you with your child, and it can help you participate most fully in the team process.

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in information-gathering, information-sharing, and in decision-making. However, it is ultimately up to you to decide what role(s) you want to take in this process and what role(s) you need help with. It is helpful to know that families do, indeed, choose different roles in relationship to professionals. Some parents want to allow professionals to make most decisions about their child, others want to serve as an informant to the professional, some want veto power, and some parents want a shared role in the intervention with their child.

• Prepare for visits to the doctor, therapist, or school by writing down a list of the questions or concerns you would like to discuss with the professional. • Keep a notebook in which you write down information concerning your special needs child. This can include your child’s medical history, test results, observations about behavior or symptoms that will help the professional do his or her job, and so on. (A loose-leaf notebook is easy to maintain and add information to.) • If you don’t agree with a professional’s recommendations, say so. Be as specific as you can about why you don’t agree. • Do whatever informed “shopping around” is necessary to find a doctor who understands your child’s needs, is willing to work collaboratively with other medical professionals, and with whom you feel comfortable. • Measure a professional’s recommendations for home treatment programs or other interventions against your own schedule, finances, and other commitments. You may not be able to follow all advice or take on one more thing, feeling as Helen Featherstone did when she wrote, “What am I supposed to give up?…There is no time in my life that hasn’t been spoken for, and for every fifteenminute activity that has been added, one has to be taken away.” Peggy Finston points out that “most professionals won’t be familiar with the sum total of our obligations and will not take it upon themselves to give us permission to quit. This is up to us. It’s in our power to make the decision.” In conclusion, it is important that the parent/professional relationship empower the parent to be a full participant WWW.TDSN.ORG

You are also free to change your mind about the role or level of involvement you may want or be able to assume regarding your child’s services. You may find that you choose different roles at different times for different purposes. Be as direct as possible about what you want or don’t want to take on in this regard. Summary In this article, we have looked at many of the issues facing you as parents of a child with a disability. Learning that your child has a disability or illness is just the beginning of the journey. At times, you may feel overwhelmed by the challenges associated with disability and by the strength of your own emotions. And while you may feel alone and isolated, there are many supports available. Other parents can be invaluable sources of help and information. Services are also available through public agencies that can assist your entire family — early intervention services for infants and toddlers and educational services for preschoolers and school-aged children. Having access to information and supports may be critical in maintaining a stable and healthy family life. We urge you to read, to talk to other parents who have a child with a disability, to talk with each other and with other family members, and to reach out for assistance when you need it. We conclude with the words of Clare Claiborne Park, as she reflects upon the experience and emotions of being a parent of a child with disabilities. This experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson of Sophocles and Shakespeare — that one grows by suffering. And that too is Jessy’s gift. I write now what fifteen years past I would still not have thought possible to write; that if today I was given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands — because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love. NEW PARENT HANDBOOK

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You are not alone By Patricia McGill Smith

minds and hearts when they receive any bad news about their child.

f you have recently learned that your child has a developmental delay or a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.

Many things can be done to help yourself through this period of trauma. That is what this paper is all about. In order to talk about some of the good things that can happen to alleviate the anxiety, let us first take a look at some of the reactions that occur.

When parents learn about any difficulty or problem in their child’s development, this information comes as a tremendous blow. The day my child was diagnosed as having a disability, I was devastated — and so confused that I recall little else about those first days other than the heartbreak. Another parent described this event as a “black sack” being pulled down over her head, blocking her ability to hear, see, and think in normal ways.

Common Reactions

Another parent described the trauma as “having a knife stuck” in her heart. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents’ 118

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On learning that their child may have a disability, most parents react in ways that have been shared by all parents before them who have also been faced with this disappointment and this enormous challenge. One of the first reactions is denial — “This cannot be happening to me, to my child, to our family.” Denial rapidly merges with anger, which may be directed toward the medical personnel who were involved in providing the information about the child’s problem. Anger can also color communication between husband and wife WWW.TDSN.ORG

or with grandparents or significant others in the family. Early on, it seems that the anger is so intense that it touches almost anyone, because it is triggered by the feelings of grief and inexplicable loss that one does not know how to explain or deal with. Fear is another immediate response. People often fear the unknown more than they fear the known. Having the complete diagnosis and some knowledge of the child’s future prospects can be easier than uncertainty. In either case, however, fear of the future is a common emotion: “What is going to happen to this child when he is five years old, when he is twelve, when he is 21? What is going to happen to this child when I am gone?” Then other questions arise: “Will he ever learn? Will he ever go to college? Will he or she have the capability of loving and living and laughing and doing all the things that we had planned?” Other unknowns also inspire fear. Parents fear that the child’s condition will be the very worst it possibly could be. Over the years, I have spoken with so many parents who said that their first thoughts were totally bleak. One expects the worst. Memories return of persons with disabilities one has known. Sometimes there is guilt over some slight committed years before toward a person with a disability. There is also fear of society’s rejection, fears about how brothers and sisters will be affected, questions as to whether there will be any more brothers or sisters in this family, and concerns about whether the husband or wife will love this child. These fears can almost immobilize some parents. Then there is guilt — guilt and concern about whether the parents themselves have caused the problem: “Did I do something to cause this? Am I being punished for something I have done? Did I take care of myself when I was pregnant? Did my wife take good enough care of herself when she was pregnant?” For myself, I remember thinking that surely my daughter had slipped from the bed when she was very young and hit her head, or that perhaps one of her brothers or sisters had inadvertently let her drop and didn’t tell me. Much self-reproach and remorse can stem from questioning the causes of the disability. Guilt feelings may also be manifested in spiritual and religious interpretations of blame and punishment. When they cry, “Why me?” or “Why my child?”, many parents are also saying, “Why has God done this to me?” How often have we raised our eyes to heaven and asked: “What did I ever do to deserve this?” One young mother said, “I feel so guilty because all my life I had never had a hardship and now God has decided to give me a hardship.”

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Confusion also marks this traumatic period. As a result of not fully understanding what is happening and what will happen, confusion reveals itself in sleeplessness, inability to make decisions, and mental overload. In the midst of such trauma, information can seem garbled and distorted. You hear new words that you never heard before, terms that describe something that you cannot understand. You want to find out what it is all about, yet it seems that you cannot make sense of all the information you are receiving. Often parents are just not on the same wavelength as the person who is trying to communicate with them about their child’s disability. Powerlessness to change what is happening is very difficult to accept. You cannot change the fact that your child has a disability, yet parents want to feel competent and capable of handling their own life situations. It is extremely hard to be forced to rely on the judgments, opinions, and recommendations of others. Compounding the problem is that these others are often strangers with whom no bond of trust has yet been established. Disappointment that a child is not perfect poses a threat to many parents’ egos and a challenge to their value system. This jolt to previous expectations can create reluctance to accept one’s child as a valuable, developing person. Rejection is another reaction that parents experience. Rejection can be directed toward the child or toward the medical personnel or toward other family members. One of the more serious forms of rejection, and not that uncommon, is a “death wish” for the child — a feeling that many parents report at their deepest points of depression. During this period of time when so many different feelings can flood the mind and heart, there is no way to measure how intensely a parent may experience this constellation of emotions. Not all parents go through these stages, but it is important for parents to identify with all of the potentially troublesome feelings that can arise, so that they will know that they are not alone. There are many constructive actions that you can take immediately, and there are many sources of help, communication, and reassurance. Seek the Assistance of Another Parent There was a parent who helped me. Twenty-two hours after my own child’s diagnosis, he made a statement that I have never forgotten: “You may not realize it today, but there may come a time in your life when you will find that having a daughter with a disability is a blessing.” I can remember being puzzled by these words, which were nonetheless an invaluable gift that lit the first light of NEW PARENT HANDBOOK

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hope for me. This parent spoke of hope for the future. He assured me that there would be programs, there would be progress, and there would be help of many kinds and from many sources. And he was the father of a boy with intellectual disabilities. My first recommendation is to try to find another parent of a child with a disability, preferably one who has chosen to be a parent helper, and seek his or her assistance. All over the United States and over the world, there are Parent to Parent Programs. NICHCY (the National Dissemination Center for Children with Disabilities) has listings of parent groups that will reach out and help you. Consult NICHCY’s Resources in Your State page, where you can choose your state from a drop-down menu. Look under the section called “Organizations for Parents.” Talk with Your Mate, Family and Significant Others Over the years, I have discovered that many parents don’t communicate their feelings regarding the problems their children have. One spouse is often concerned about not being a source of strength for the other mate. The more couples can communicate at difficult times like these, the greater their collective strength. Understand that you each approach your roles as parents differently. How you will feel and respond to this new challenge may not the same. Try to explain to each other how you feel; try to understand when you don’t see things the same way. If there are other children, talk with them, too. Be aware of their needs. If you are not emotionally capable of talking with your children or seeing to their emotional needs at this time, identify others within your family structure who can establish a special communicative bond with them. Talk with significant others in your life — your best friend, your own parents. For many people, the temptation to close up emotionally is great at this point, but it can be so beneficial to have reliable friends and relatives who can help to carry the emotional burden. Rely on Positive Sources in Your Life One positive source of strength and wisdom might be your minister, priest, or rabbi. Another may be a good friend or a counselor. Go to those who have been a strength before in your life. Find the new sources that you need now. A very fine counselor once gave me a recipe for living through a crisis: “Each morning, when you arise, recognize your powerlessness over the situation at hand, turn this problem over to God, as you understand Him, and begin your day.” 120

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Whenever your feelings are painful, you must reach out and contact someone. Call or write or get into your car and contact a real person who will talk with you and share that pain. Pain divided is not nearly so hard to bear as is pain in isolation. Sometimes professional counseling is warranted; if you feel that this might help you, do not be reluctant to seek this avenue of assistance. Close-up photo of one drop of water falling into a still pool, and the circles that go out from it. Take One Day at a Time Fears of the future can immobilize one. Living with the reality of the day which is at hand is made more manageable if we throw out the “what if’s” and “what then’s” of the future. Even though it may not seem possible, good things will continue to happen each day. Worrying about the future will only deplete your limited resources. You have enough to focus on; get through each day, one step at a time. Learn the Terminology When you are introduced to new terminology, you should not be hesitant to ask what it means. Whenever someone uses a word that you don’t understand, stop the conversation for a minute and ask the person to explain the word. Seek Information Some parents seek virtually “tons” of information; others are not so persistent. The important thing is that you request accurate information. Don’t be afraid to ask questions, because asking questions will be your first step in beginning to understand more about your child. Learning how to formulate questions is an art that will make life a lot easier for you in the future. A good method is to write down your questions before entering appointments or meetings, and to write down further questions as you think of them during the meeting. Get written copies of all documentation from physicians, teachers, and therapists regarding your child. It is a good idea to buy a three-ring notebook in which to save all information that is given to you. In the future, there will be many uses for information that you have recorded and filed; keep it in a safe place. Again, remember always to ask for copies of evaluations, diagnostic reports, and progress reports. If you are not a naturally organized person, just get a box and throw all the paperwork in it. Then when you really need it, it will be there.

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Do Not Be Intimidated

and Anger

Many parents feel inadequate in the presence of people from the medical or educational professions because of their credentials and, sometimes, because of their professional manner. Do not be intimidated by the educational backgrounds of these and other personnel who may be involved in treating or helping your child. You do not have to apologize for wanting to know what is occurring. Do not be concerned that you are being a bother or are asking too many questions. Remember, this is your child, and the situation has a profound effect on your life and on your childâ&#x20AC;&#x2122;s future. Therefore, it is important that you learn as much as you can about your situation.

Feelings of bitterness and anger are inevitable when you realize that you must revise the hopes and dreams you originally had for your child. It is very valuable to recognize your anger and to learn to let go of it. You may need outside help to do this. It may not feel like it, but life will get better and the day will come when you will feel positive again. By acknowledging and working through your negative feelings, you will be better equipped to meet new challenges, and bitterness and anger will no longer drain your energies and initiative.

Do Not Be Afraid to Show Emotion So many parents, especially dads, repress their emotions because they believe it to be a sign of weakness to let people know how they are feeling. The strongest fathers of children with disabilities whom I know are not afraid to show their emotions. They understand that revealing feelings does not diminish oneâ&#x20AC;&#x2122;s strength. Learn to Deal with Natural Feelings of Bitterness

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Maintain a Positive Outlook A positive attitude will be one of your genuinely valuable tools for dealing with problems. There is, truly, always a positive side to whatever is occurring. For example, when my child was found to have a disability, one of the other things pointed out to me was that she was a very healthy child. She still is. The fact that she has had no physical impairments has been a great blessing over the years; she has been the healthiest child I have ever raised. Focusing on the positives diminishes the negatives and makes life easier to deal with. NEW PARENT HANDBOOK

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Keep in Touch with Reality To stay in touch with reality is to accept life the way it is. To stay in touch with reality is also to recognize that there are some things that we can change and other things that we cannot change. The task for all of us is learning which things we can change and then set about doing that. Remember That Time Is on Your Side Time heals many wounds. This does not mean that living with and raising a child who has problems will be easy, but it is fair to say that, as time passes, a great deal can be done to alleviate the problem. Therefore, time does help! Find Programs for Your Child Even for those living in isolated areas of the country, assistance is available to help you with whatever problems you are having. NICHCY’s State Organizations Search contacts you with folks who can help you get started in gaining the information and assistance you need. While finding programs for your child with a disability, keep in mind that programs are also available for the rest of your family. Take Care of Yourself In times of stress, each person reacts in his or her own way. A few universal recommendations may help: Get sufficient rest; eat as well as you can; take time for yourself; reach out to others for emotional support. Avoid Pity Self-pity, the experience of pity from others, or pity for your child is actually disabling. Pity is not what is needed. Empathy, which is the ability to feel with another person, is the attitude to be encouraged. Decide How to Deal With Others During this period, you may feel saddened by or angry about the way people are reacting to you or your child. Many people’s reactions to serious problems are caused by a lack of understanding, simply not knowing what to say, or fear of the unknown. Understand that many people don’t know how to behave when they see a child with differences, and they may react inappropriately. Think about and decide how you want to deal with stares or questions. Try not to use too much energy being concerned about people who are not able to respond in ways you might prefer.

seems to produce some normalcy and consistency when life becomes hectic. Photo of achild in a stroller, thumb in her mouth, looking straight at you.Remember That This is Your Child This person is your child, first and foremost. Your child’s development may be different from that of other children, but this does not make your child less valuable, less human, less important, or in less need of your love and parenting. Love and enjoy your child. The child comes first; the disability comes second. If you can relax and take the positive steps just outlined, one at a time, you will do the best you can, your child will benefit, and you can look forward to the future with hope. Recognize That You Are Not Alone The feeling of isolation at the time of diagnosis is almost universal among parents. In this article, there are many recommendations to help you handle feelings of separateness and isolation. It helps to know that these feelings have been experienced by many, many others, that understanding and constructive help are available to you and your child, and that you are not alone.

Keep Daily Routines as Normal as Possible My mother once told me, “When a problem arises and you don’t know what to do, then you do whatever it was that you were going to do anyway.” Practicing this habit 122

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Resources Triangle Down Syndrome Network tdsn.org (919) 803-0515 24-hour line: (919) 788-3646 The Arc of North Carolina

State and national advocacy organization that provides, governmental relations and life guardianship for people with developmental disabilities and their families.

arcnc.org (919) 782-4632

arcofthetriangle.com | info@arcnc.org (800) 662-8706 Assistive Technology Program (NC)

Information and referral in all areas of assistive technology including laws, advocacy, funding sources, programs and specific assistive technology devices. Raleigh demonstration center has devices available for trial use.

ncatp.org (919) 855-3551

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Autism Society of NC

Information, referral and advocacy for people with autism and their families. Services include parent support and direct service programs such as summer camps. Also provides Wake County Autism Support Group information and contact.

autismsociety-nc.org (919) 743-0204 | (800) 442-2762

Care Coordination for Children

Provides free case management services to families of children from birth to 5 years of age who are at risk for developmental delay, disability, chronic illness or social/emotional disorders. Developmental screenings, transportation and social support are also available.

(919) 250-1154

Child Care Services Association

Assists parents in locating and selecting childcare. Provides information on quality childcare and furnishes research on a providerâ&#x20AC;&#x2122;s background. Also offers parent and childcare provider workshops.

childcareservices.org Orange (919) 967-3272 | Durham: 403-6950 Wake County: (919) 779-2220

WWW.TDSN.ORG

Community Partnerships, Inc

Leisure and recreation services for children 5 years and up with a developmental disabilities. It also provides consulting, training and support to recreation staff to understand individual needs and be comfortable with inclusive recreation experiences. Inclusion Resources Project: Consultation/training for childcare centers, preschools, after school, and summer programs to support the inclusion of young children with special needs. Inclusion Preschool Services: Provides individual screening, therapy services and transition assistance to young children with or at risk of developmental delay/disabilities who are already in regular childcare settings.

communitypartnerships.org Raleigh: (919) 781-3616 Durham: (919) 402-9400 Goldsboro: (919) 288-1616 Greenville: (252) 565-8983

Children’s Developmental Services Agency

A federally mandated program serving children from birth to age 5. Assessment by a team of professional for early identification of development delay or disability at no charge to families. The Infant-Toddler Program hosts a variety of agencies working together to provide early intervention services for children ages birth to three who have special needs and their families. The Preschool Services Program includes all 3- and 4-year-old children who have disabilities and 5-year-olds with disabilities who aren’t old enough for kindergarten. The needs of these children (because of permanent or temporary disability in the areas of cognitive, communicative, social/ emotional and/or adaptive disabilities) are unable to be met in a natural environment without special education and related services.

beearly.nc.gov (919) 707-5520 Durham: (919) 560-5600 Cape Fear: (910) 251-5817 Wake County: (919) 662-4600 Rocky Mount: (252) 442-0318 Sandhills: (910) 295-3133

Disability Rights NC

Provides advocacy and legal information for individuals with disabilities and their family members.

disabilityrightsnc.org | info@disabilityrightsnc.org 877-235-4210

Duke Down Syndrome Clinic at Duke Children’s Hospital

Provides comprehensive, multidisciplinary medical care for individuals with Down syndrome; educational resource for families of individuals with Down syndrome.

dukechildrens.org/services/ medical_genetics/down_syndrome_clinic (919) 684-6669

Exceptional Children’s Assistance Center

For parents of students with special needs: parent education workshops, individual assistance with educational problems, parentto-parent support, information and referral and lending library.

ecac-parentcenter.org | ecac@ecacmail.org 1-800-740-4135

First in Families NC

Self-directed family-centered approach to linking people with community resources for individuals with emotional disability or developmental delay.

fifnc.org | info@fifnc.org (919) 251-8368

First in Families Wake County (866) 740-4135 First in Families Durham County (919) 724-3423 GCF Family Support Services

Information and support for families of children and adults with special needs, including children with chronic illnesses. Maintains a statewide database on services and supports for families.

gcffamilysupportservices.org Wake: (919) 662-4600 Ext. 257 Orange/Durham: (919) 667-1067

La Leche League of NC

Breast feeding support group that provides support to mothers of infants with special needs. Local referrals are provided.

llofnc.org (877) 452-5324

National Down Syndrome Congress

Offers excellent information for parents and grandparents and organizes an annual national conference for parents and professionals.

ndsccenter.org | info@ndscenter.org (800) 232-NDSC (6372)

National Down Syndrome Society

Offers excellent information to professionals and families, provides advocacy services and organizes a national conference.

ndss.org | info@ndss.org (800) 221-4602

National Dissemination Center for Children with Disabilities

Provides referral and support services to families. (The acronym is from an outdated name that the group no longer considers “people-first” language.)

nichcy.org

WWW.TDSN.ORG

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NC Council on Developmental Disabilities

Our mission is to ensure that people with developmental disabilities and their families participate in the design of and have access to culturally competent services and supports, as well as other assistance and opportunities, which promote inclusive communities.

nc-ddc.org | info@nccdd.org (919) 850-2901 | 1-800-357-6916

NC Department of Health & Human Services

The largest agency in state government, responsible for ensuring the health, safety and well being of all North Carolinians, providing the human service needs for fragile populations like the mentally ill, deaf, blind and developmentally disabled, and helping poor North Carolinians achieve economic independence.

ncdhhs.gov/disabilities/index.htm (800) 662-7030 (English/Spanish)

Parks & Recreation Raleigh | Specialized Recreation and Inclusion

For children and adults with developmental disabilities, visual impairment, or deafness/hard of hearing. Provides recreation/leisure programming for Wake County residents with special needs.

(919) 996-6835 Durham (Special Programs/Inclusion) (919) 560-4355 Orange County (Inclusive Recreation) (919) 245-2660

Social Security Administration ssa.gov/atlanta/southeast/nc/north_carolina.htm (800) 772-1213

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Special Olympics of NC

Organizes athletic activities for individuals age 8 and up with intellectual disabilities.

sonc.net (919) 719-7662 | (800) 843-6276

Wake County Public School System Project Enlightenment

Consultation, education, support and information for parents/ teachers of children (birth-kindergarten) with special needs. Parent lending library, resource room, parenting workshops, inclusive demonstration preschool program provided.

projectenlightenmnet.wcpss.net (919) 856-7774

Wake County Public School System Special Education Services

The Wake County Public School System provides special education and related services according to the federal mandates of the Individual with Disabilities Act and the regulations of the North Carolina Public School Law, Article 9.

wcpss.net/departments/specialeducation.html (919) 848-3151 Office of Family & Community Connections: (919) 431-7334 Spanish Line: (919) 431-7143

YMCA of the Triangle ymcatriangle.org (919) 719-9622

WWW.TDSN.ORG

A Special Thank You: Maari Casey, Leigh Menconi, Suzanne & Ted Temple, Charlotte Dunne, Martin Osterhout, Lisa Macario, Kristine Flora, Melissa Cackovic, Billy Liggett, Tom Oâ&#x20AC;&#x2122;Brien, Andrea Higgins and Alexandra Higgins.

WWW.TDSN.ORG

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600 New Waverly Place, Suite 101 Cary, NC 27518

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