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Benefits of Service & Therapy Animals Pg. 5
Safeguard Kids from Bullying Pg. 10
Help ADHD Kids Get Organized Pg. 22
Special Needs Support Groups & Resource Guide
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ONE IN 54
CHILDREN HAS AUTISM.
WE CHANGE LIVES ONE CHILD AT A TIME. FOR 65 YEARS, MAY INSTITUTE HAS PROVIDED EXCEPTIONAL CARE TO CHILDREN WITH AUTISM AND OTHER SPECIAL NEEDS. OUR SERVICES ARE B ASED ON APPLIED BEH AVIOR AN ALYSIS (AB A):
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Your Child with Special Needs
Contents Your Child’s Learning
Health & Wellness
22 Helping ADHD Kids Organize for School
5
32 Understanding Executive Functions
27 Yoga for Children with Special Needs
36 IEP’s and Challenging Behavior
29 Finding Mental Health Providers
38 Need a 3rd Party Evaluation?
44 Why Self-Care is Vital for Parents
40 Understanding the IEP Process
47 Universal Playgrounds
42 Transition Assessments
50 Eating Clean
48 8 Tips for School Success
Tolerance & Understanding 10 How to Safeguard Children with Special Needs 16 When a Sibling has Special Needs 20 6 Tips for Playdates for Children with Special Needs
Specially Trained Animals
Resources 13 Health & Special Needs Family Favorites 54 Special Needs Support Groups and Organizations 56 Special Needs Resource Guide
24 Body-Focused Repetitive Behaviors
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Informing, Educating, Empowering Families
The Federation for Children with Special Needs is the place families turn to when they need information and resources to help their children with disabilities. Our programs offer training opportunities, support groups, and one-to-one assistance on special education, healthcare, community resources, and parent/professional collaboration. October 2020:
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Making a Difference | Nov. 17, 2020 An opportunity for Special Education Surrogate Parents to learn and network with one another, industry professionals, and Federation staff. fcsn.org/rtsc/rtscconference Annual Appeal Support our work with families during our Annual Appeal. fcsn.org/donate
March 2021: Visions of Community | March 6, 2021 A full day of learning and networking opportunities for families of children with special needs and the professionals who serve them. fcsn.org/voc
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ervice and therapy animals have become increasingly popular for children with special needs, and for good reason. Research shows that animals can make a huge difference in kids’ physical independence and emotional well-being. Additionally, service and therapy animals are being trained to help a very wide range of people with many different disabilities, in many settings.
Types of Service Animals Service, emotional support, and therapy animals are trained differently, perform different tasks, and have access to public places at different levels. According to the Service Animal Association, a service dog works to help the owner perform tasks they cannot perform on their own because of their disability, an emotional
support animal works to improve the health of their owner who is disabled, and the therapy animal works with their owner to improve the health of others. SERVICE ANIMALS: The vast majority of service animals are dogs. Service dogs may guide individuals who are blind or deaf, alert others to an individual who is having a
seizure, pull a wheelchair, retrieve dropped items, and otherwise perform meaningful physical services to a person with a physical disability. Service dogs are not pets; they are highly trained, and are considered to be “medical equipment.” As a result, they have special legal status and may accompany their owner virtually anywhere they can fit. EMOTIONAL SUPPORT ANIMALS: Emotional support animals may be dogs—but may also be almost any other species. They are medically prescribed by a doctor and provide support for a single disabled person. Emotional support animals are not continued on page 6 >>> Special Needs Guide | BostonParentsPaper.com
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highly trained, but they do provide significant support and comfort; as a result, they are allowed on airplanes and in “no pets allowed” hotels, restaurants, and other public facilities. THERAPY ANIMALS: Therapy animals are pets that have been trained, registered, and insured. They belong not to a disabled individual but to someone who brings the animal to facilities for therapeutic purposes. A therapy animal might visit nursing homes, hospitals, clinics, or schools to provide stress relief and comfort. Unlike service animals and emotional support animals, therapy animals are not medically required and thus can’t (for example) be brought into a school without special permission.
TYPES OF NEEDS MET Service and emotional support animals can do a great deal for your child, no matter what their disabilities. Of course, the animal must be trained in order to be more than just a warm, friendly companion—and you must learn how to work with the animal to get the most of its abilities and skills. Here are just a few of the things a
service or emotional support animal could do for your child: • Guide a child who is blind, deaf, or has focus issues to be sure they cross roads safely, avoid obstacles, and avoid collisions with other pedestrians • Alert others to an event, such as seizure or a low blood sugar, that requires immediate medical attention • Pull a wheelchair or provide physical support for transferring, balance, and other needs • Help to pick up dropped items • Support learning by (with proper training) attending to the child as they read aloud • Provide companionship and emotional support
• Enhance social skills by responding to a child’s input (horses, for example, respond to a child’s touch while dogs respond to commands) • Build self-esteem and responsibility • Help to manage anxiety and moodrelated challenges • Help to model appropriate behaviors (dogs can actually show children how to appropriately relax in bed, rise for the day, respond to requests, etc.)
BENEFITS No matter what your child’s special needs are, there’s a good chance that an animal can help. But before leaping into action, remember that animals are living, feeling beings that need a safe environment and an owner who is capable of understanding their needs and limitations.7 Before saying “yes” to a service or support animal, consider these questions: • Is my child old enough (usually 12+) to physically and intellectually work with and (to whatever degree possible) care for an animal? • Are my child’s needs likely to be met by an animal? Obviously, a therapy animal is a poor choice for a child who is afraid of animals or is likely to ignore, injure, or neglect them. continued on page 8 >>>
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• Is our family ready to own and care for a service or emotional support animal? Yes, there are laws to protect the animal from a landlord, but do you have space and time to own (for example) a large dog? • Are you able to make a long-term commitment to an animal that may be living with you for many years? • Is an animal the best tool to achieve your child’s goals? For example, an emotional support dog may delight a child with autism, but it might also wind up being a substitute for (rather than a tool for improving) important human interactions. • Where and how would your child work with a service or support animal? Are those settings likely to be safe and appropriate for your animal?
ACCESS If your child’s animal is considered “medical equipment” or has been prescribed by a doctor, the ADA (Americans with Disabilities Act) says the animal can be with your child at all times. The one important exception is when the animal itself is behaving badly and thus causing a nuisance or danger to others. You will, however, need to check with your state’s policies regarding the definition of service and support animals to be sure your animal meets their criteria. According to the ADA: “The ADA requires State and local government agencies, businesses, and non-profit organizations (covered entities) that provide goods or services to the public to make “reasonable modifications” in their policies, practices, or procedures when necessary to accommodate people with disabilities. The service animal rules fall under this general principle.
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AT SCHOOL
HOW TO GET ONE
The same rules are required at schools. Allergies and fear of dogs are not valid reasons for denying access or refusing service to people using service animals.
If you simply want an animal companion for your child, your best bet is to research types and breeds, have your child visit with a few potential pets, and then buy the animal that suits your needs. Such an animal, however,
When a person who is allergic to dog dander and a person who uses a service animal must spend time in the same room or facility, for example, in a school classroom or at a homeless shelter, they both should be accommodated by assigning them, if possible, to different locations within the room or different rooms in the facility. Rules that pertain to service animals and most emotional support animals do not apply to pets. Even if your child is emotionally attached to their animal friend, they may have to leave the animal at home if you don’t have the right documentation. If you want your doctor or therapist to prescribe an emotional support animal for your child with special needs, you can ask them to write an official letter explaining your child’s disability and why the animal is required for their mental health. That letter must be provided, in advance, to airlines and other public facilities that prohibit pets.
will not have access to public places as they are not covered by the ADA. If needed, you can ask your child’s medical practitioner to write a letter describing your pet as an emotional support animal. If you are interested in a trained service animal, you’re in for a very different experience. Service animals are expensive because they are highly trained. In addition, your child will only be given a service animal if he or she is trained and capable of interacting properly with the animal. You may even have to submit to a home inspection to be sure you own a suitable home for the animal. While the cost of service animals is high, there’s an excellent chance that you will be provided with an animal at a discount or even free through a non-profit service animal provider. If you have non-Medicaid health insurance (including veterans insurance) you may also be able to defray some of your costs. ✷
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By Malia Jacobson
W
hen young Cody joined the peer inclusion preschool at his neighborhood public school, he fit in from the start. His class was a mix of neurotypical “peer mentors” and children with disabilities, including students like Cody with apraxia of speech, a motor speech disorder that made communication complicated. The school’s curriculum encouraged understanding and advocating for students with disabilities, says Cody’s mom, and he felt accepted and included. Because the peer inclusion program wasn’t offered after preschool, Cody enrolled in another local school for kindergarten. That’s when the bullying began—Cody began experiencing harassment and physical bullying nearly every day, mostly from students in his own class. When he reacted, he was punished by missing recess or simply sitting in “time out,” recalls
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his mother, an active member of the local Special Needs PTA. “We were getting 4, 5, 6 disciplinary notices every week, and I knew something was really wrong, because that wasn’t an issue at his other school.”
Bullying and Disability Bullying at school—defined as disrupting or interfering with a student’s educational environment through intimidating, threatening, or physically harming a student or the student’s belongings—affects children with disabilities more often than other kids. While around ten percent of neurotypical kids experience bullying, the number jumps five-fold for students with disabilities. Through bullying is harmful to all children, it’s especially hurtful for children with disabilities. Children with certain conditions that affect speech or communication may not be able to tell teachers or caregivers
what they’re experiencing, making bullying harder to identify and correct, says David Camenisch, MD, a psychiatrist with the Seattle Children’s Hospital Autism Center. “A child with special needs who is bullied may internalize their distress, becoming disruptive at school or at home, developing feeding or toileting problems, or physical complaints like stomachache or headaches.” And bullying doesn’t just harm the child being bullied. Bullying negatively impacts students who observe it—the so-called bystanders—along with teachers and adults connected to the school. “Bullying is insidious because it erodes feelings of confidence and safety not only for those directly involved in bullying but for bystanders, teachers and parents,” says Camenisch. School districts are starting to take notice. “In recent years, there’s
been greater awareness and more education around what bullying is as it relates to students with disabilities, and the fact that students with disabilities have protections under the law,” says Jen Cole, MA, director of Parent Training and Information with Tacoma’s PAVE (Partnerships for Action Voices for Empowerment), which provides support and resources for individuals, youth and families impacted by disabilities. All states have anti-bullying laws to protect kids. Students with an identified disability have added layers of civil rights protection via federally guaranteed right to a free, appropriate public education (sometimes referred to as FAPE). Awareness of the impacts of bulling on multicultural and English learning children with disabilities is also increasing, Cole says, thanks to the advocacy effects led by caregivers and organizations like Open Doors for Multicultural Families. “Students with disabilities experience a lot of intersectionality with identity,” says Cole. “That means that when a student with a disability is also transitional bilingual, English learning, a student or color, or experiencing homelessness, they’re more vulnerable to bullying and also have less access to resources to help.”
How Adults—and Kids—Can Help When it comes to bullying, caregivers for students with disabilities can’t afford to be unprepared, says Cole. “I encourage families to be proactive because it’s so hard when it happens to and we are unprepared,” she says. One of the best ways to prepare: Make your child’s individualized education plan (IEP) or 504 plan part of your anti-bullying toolkit. “Make this [harassment, intimidation and bullying] part of your student’s IEP meeting so that things like social-emotional growth and self-determination become something you’re talking about regularly with the school,” Cole says. Self-determination, or the student’s ability to voice their own needs and wants, can be a benchmark within an IEP plan, as well as a school-wide focus. “A healthy school climate is one in which everyone is actively working on skills like showing respect, being safe, being responsibility, and specific skills elated to bullying, specifically self-determination— students learning how to speak up for themselves,” says Cole. While anti-bullying education is now common in schools, some programs are more effective than others. Peer advocacy—teaching
“Proactive social skills include the ability to identify and respond to bullying, situational awareness, and very fundamentally knowing ‘what is a friend.’”
students to stand up for others— can be one of the most effective forms of anti-bullying education, says Camenisch. “Bullies are more responsive to peers pointing out that their behavior is wrong than they are to adults.” Outside of school, caregivers can help encourage the growth of proactive social skills that help protect kids from bullying, says Camenisch. “Proactive social skills include the ability to identify and respond to bullying, situational awareness, and very fundamentally knowing ‘what is a friend.’” Role-playing through potential playground interactions and reading books like Don’t Pick on Me by Susan Green are more ways parents to promote proactive social skills, says Camenisch. A combination of peer advocacy and parent-to-parent education shifted the climate in Cody’s kindergarten classroom. His mother used social media and the classroom contact list to educate other parents about Cody’s condition and ask for their support. As the class learned more about disability and bullying, Cody’s primary tormentor ended up becoming a strong peer advocate. “It was an exhausting few months, but it made me aware of the resources that are available for things like this,” she says. Most importantly, Cody now feels accepted and included at his school, she says. “He absolutely loves his friends. He just wants to feel like everyone else.” Bullying isn’t a learning experience anyone wants for their child—it’s far too damaging and dangerous. “But addressing bullying can be very empowering for kids and for adults,” Camenisch. “It can jumpstart learning and give kids an opportunity to help others understand their unique challenges.” “It is possible to navigate this successfully,” he adds. “But it takes a team.” ✷ Malia Jacobson is a nationally published health and family journalist.
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2020 WINNER
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ach year in March and April Boston Parents runs a survey to find out from our readers who are the Family Favorites in over 80 categories. This year we published the complete list of winners in the August issue of Boston Parents and are reprinting categories here most related to health and special needs for this guide. The complete list of Family Favorite Winners is available at BostonParentsPaper. com in the “Our Magazines” tab under the Annual Guides section.
Summer Camps Health and Special Needs Summer Camps THE TOP 5
• Camp Howe, Goshen • Dedham Health & Athletic Complex, Dedham • Franciscan Children’s, Brighton • Learning Solutions, Norwood • The Bridge Center, Bridgewater
Boston Parents
Family Favorite Winners
in Health and Special Needs Categories THE WINNER
Camp Howe, Goshen
Health Hospitals THE TOP 5
• Boston Children’s Hospital, Boston • Brigham and Women’s Hospital, Boston • Franciscan Children’s, Brighton • Mass General Hospital, Boston • South Shore Hospital, Weymouth THE WINNER
Boston Children’s Hospital, Boston
Learning Disabilities Specialists THE TOP 5
• Anna Hebert, Wellesley • Applied Behavioral Learning Services, Newton • Commonwealth Learning Center, Multiple Locations • Franciscan Children’s, Brighton • Learning Solutions, Norwood THE WINNER
Franciscan Children’s, Brighton
Mental Health Practices THE TOP 5
• Advanced Neurotherapy, Needham • Arlington Youth Counseling Center, Arlington • Boston Neuro Behavioral Associates (BNBA), New Bedford • Franciscan Children’s, Brighton • South Shore Therapies, Multiple Locations
Pediatricians THE TOP 10
• Centre Pediatrics Associates P.C., Brookline • Chestnut Hill Pediatrics, Chestnut Hill • Framingham Pediatrics, Framingham • Franciscan Children’s, Brighton • Longwood Pediatrics, Boston • Mass General, Waltham • MVPediatrics, Quincy • Needham Pediatrics, Needham • Pediatric Health Care at Newton Wellesley, Wellesley • Roslindale Pediatrics Associates, West Roxbury continued on page 14 >>>
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THE WINNER
Centre Pediatrics Associates P.C., Brookline
Speech-Language Therapy THE TOP 5
• Chatterboxes Speech and Language Pathology, Newton • Children’s Speech & Language Services, LLC, Lexington • Learning Solutions LLC, Norwood • South Shore Therapies, Multiple Locations • Speech-Language Pathology Center, Norwell THE WINNER
Speech-Language Pathology Center, Norwell
Sports Medicine Practices THE TOP 5
• Boston Children’s Hospital Sports Medicine, Boston • Boston Sports Medicine, Multiple Locations • Marathon Physical Therapy and Sports Medicine, Multiple Locations • New England Hand Associates, Multiple Locations • Orthopedics New England, Multiple Locations THE WINNER Boston Children’s Hospital Sports Medicine, Boston
Special Needs Services and Resources Special Needs After School Programs THE TOP 5
• Applied Behavioral Learning Services, Wellesley • BBLC, Boston • Charles River Aspire After School Program, Needham • Commonwealth Learning Center, Danvers and Needham • Learning Solutions, Norwood THE WINNER
Applied Behavioral Learning Services, Wellesley
Special Needs Child Care Facilities THE TOP 5
• Applied Behavioral Learning Services, Wellesley 14
Boston Parents Paper | Special Needs Guide
• Charles River Early Intervention, Waltham • Integrated Center for Child Development Services, Canton • Learning Solutions, Norwood • South Shore Therapies, East Weymouth THE WINNER
Applied Behavioral Learning Services, Wellesley
Special Needs Elementary Schools THE TOP 10
• Boston College Campus School, Chestnut Hill • Boston Higashi School, Randolph • Cotting School, Lexington • League School Of Greater Boston, East Walpole • Learning Prep School, Newton • May Center School, Multiple Locations • Milestones Day School, Waltham • Pathways Academy, Belmont • Perkins School for the Blind, Watertown • The Kennedy Day School, Brighton • The Manville School, Boston THE WINNER
Perkins School for the Blind, Watertown
Special Needs High Schools THE TOP 5
• Boston College Campus School, Chestnut Hill • Carroll School, Lincoln • Cotting School, Lexington • May Center School, Multiple Locations • The Gifford School, Weston THE WINNER
Carroll School, Lincoln
Special Needs Legal Assistance THE TOP 5
• Education Consulting, Advocacy and Legal Services, Saugus • Fletcher Tilton Attorneys, Multiple Offices • James Baron Attorney, Waltham • Maaps, Wakefield • Special Needs Law of Ma, Framingham THE WINNER
Fletcher Tilton Attorneys, Multiple Offices
Special Needs Middle Schools THE TOP 5
• Boston College Campus School, Chestnut Hill • Carroll School, Lincoln • Cotting School, Lexington • May Center School, Multiple Locations • Perkins School for the Blind, Watertown THE WINNER
Perkins School for the Blind, Watertown
Special Needs Preschools THE TOP 5
• Cotting School, Lexington • May Center School, Multiple Locations • New England Center For Children, Southborough • Perkins School for the Blind, Watertown • The Kennedy Day School, Brighton THE WINNER
New England Center For Children, Southborough
Special Needs Recreation Programs THE TOP 5
• Athletes Unlimited, Newton • Berklee Theater Program Those with Disabilities, Boston • Boston Ballet Adaptive Dance, Boston • Discovery Museum Sensory Friendly Program, Acton • Museum of Fine Arts Autism Art Classes, Boston THE WINNER
Museum of Fine Arts Autism Art Classes, Boston
Special Needs Summer Camps THE TOP 5
• AccessSportAmerica Adaptive Water Sports Program, Multiple Locations • Bridge Center Special Needs Camps, Bridgewater • Camp Joy, Boston • Camp Three Rivers, Concord • Franciscan Hospital for Children Adaptive Sports Program, Brighton THE WINNER
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TOLERANCE & UNDERSTANDING
When a Sibling has Special Needs
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rowing up as the typically developing sibling of a brother or sister with mental health challenges or other special needs can be confusing, embarrassing and sometimes scary. Life at home with brothers or sisters who are explosive, withdrawn or alternate between periods of normal and inappropriate behavior is not easy, and “walking on eggshells” is not a healthy way to live.
THE SIBLING EXPERIENCE Siblings of children with mental health needs tend to experience a wider range of highs and lows than other children. Common dynamics include: • CONFUSION. About the unpredictable behavior and shifting moods of their brothers and sisters, who seem to be held to a different set of rules. Relatives and family friends might interact differently with the child with special needs than they do with the child’s sibling. • SAFETY CONCERNS. Siblings may be subjected to physical and verbal aggression, resulting in generalized anxiety, symptoms of posttraumatic stress disorder, sleep problems, impaired concentration in school and other issues. These concerns can be minimized with professional help. • SHAME AND EMBARRASSMENT. About a brother or sister’s behavior, making a sibling
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reluctant to invite friends over, be seen in public or participate in activities. • “PARENTIFICATION.” A child takes on adult responsibilities before she is developmentally ready. While this can be the child’s way of managing stress, siblings may miss out on childhood. • INDEPENDENCE. Accustomed to having less parental attention, young siblings are often capable of tasks that exceed their age range, such as putting themselves to bed or preparing their own meals. • OVERPROTECTIVENESS. Highly aware of their brother or sister’s vulnerabilities, siblings may become overprotective on the playground and in family arguments,
By Emily Rubin
or cover up for poor choices made by the sibling. • COMPETING FOR ATTENTION. Because a brother or sister with mental health issues requires unusual amounts of attention, some siblings resort to negative behavior to get attention of their own. Others see how emotionally taxed their parents or guardians are and don’t want to add to the burden so they keep too many personal problems to themselves. • LOVE/HATE RELATIONSHIP. Siblings may have times when they get along well together followed by bouts of intense dislike. It’s confusing when a best friend suddenly becomes a worst enemy. • ANGER AND RESENTMENT. About the seemingly preferential treatment received by a brother or sister. Siblings don’t understand the difficult choices parents and guardians make when they “pick and choose their battles.”
HOW TO SUPPORT SIBLINGS Siblings need to know that it is not acceptable to be treated poorly by someone they love or who loves them. When siblings accommodate themselves to a brother or sister’s dysfunctional behaviors, they learn an unhealthy model for building relationships in the future. To minimize the risk of entering abusive relationships as adults, siblings need the opportunity to address their conflicting feelings about their
Siblings need to understand they aren’t responsible for their brother or sister’s mental health problems. It’s not their fault nor can they fix it.
complicated families. They need to understand they aren’t responsible for their brother or sister’s mental health problems. It’s not their fault nor can they fix it. It is also important for siblings to understand their brother or sister’s condition and why it leads them to act the way they do. As they age, siblings tend to become primary advocates for their brothers and sisters with disabilities; this is especially true of female siblings. The more information and education siblings receive growing up, the more likely they are to advocate for their brothers and sisters later on with awareness and compassion. The most effective intervention is for parents or guardians to talk openly with siblings, acknowledging the challenges of their family life in age-appropriate language. Sometimes siblings tell parents things that parents don’t want to hear, such as “I hope my brother doesn’t come home from the hospital.” When this happens, it’s best for parents to validate
the child’s experience: “I can understand why you would feel this way. I know it makes you really angry when your brother does such and such.” This will let the siblings know that their concerns are important and that parents understand how difficult it is for them. Try not to blame the child with mental health needs and remind siblings that everyone has something they struggle with. Help them figure out what to say to others about their situation and help to identify “safe buddies” – friends or relatives they can turn to when home life becomes difficult. Give them opportunities to express their feelings outside of the family in a safe and nurturing setting and encourage them to lead their own lives. ✷ Emily Rubin is president of the Massachusetts Sibling Support Network, which provides education, community building and resources, such as a listing of sibling support groups. This material is adapted from the pamphlet “Supporting Siblings of Children with Mental Health Needs.”
LOCAL RESOURCES • Massachusetts Sibling Support Network; www.masiblingsupport.org • Federation for Children with Special Needs; www.fcsn.org • Massachusetts Advocates for Children; www.massadvocates.org • Children’s Behavioral Health Institute; www.mass.gov/eohhs/gov/ commissions-and-initiatives/cbhi/ • Wayside Youth & Family Support Network; www.waysideyouth.org • Parent/Professional Advocacy League; www.ppal.net • Massachusetts Department of Mental Health; www.mass.gov/dmh • Asperger’s Association of New England; www.aane.org
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Why Siblings Need Attention
T
he sibling of a child with special needs tends to grow up being a bit more loyal, understanding and accepting of others and a bit more mature than other kids. Much is expected of these siblings within the family, and they tend to rise to the occasion. But who is looking out for their needs while their brothers or sisters are requiring so much attention and care?
At a workshop in Boston entitled “No Sibling Left Behind,” panelists with the Massachusetts Sibling Support Network, prompted by questions from workshop participants, shared these recommendations for helping siblings cope with their unique experiences: • Acknowledge the siblings’ complex lives and conflicting feelings. Validate their experiences of living in a home with a child with special needs. Use age-appropriate language. Make sure siblings know they do not have to assume the role of caregiver. • Assure siblings they are not responsible for their brother or sister’s lot in life. Encourage them to have their own experiences. • Spend one-on-one time with them. This doesn’t have to be expensive; it can just be a simple activity like baking or taking a walk together. • Communicate positive feelings for them and the difficult role they play in the home. Write a loving letter, for example. • Stress that there’s no “right” or “wrong” type of family.
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Dr. Moldover & Associates provide complete psychological, neuropsychological and educational evaluations as well as ongoing consultative services for families and schools. We emphasize: • A high level of responsiveness to our clients • Timely completion of comprehensive evaluation reports (with reports completed immediately following the evaluation) • Commitment to ongoing support for each child and family • Attention to the individual and unique circumstances of each of our clients • Strong participation in multi-disciplinary teams to best coordinate the response to each child’s needs Dr. Moldover is board certified in clinical neuropsychology through the American Board of Professional Psychology. He is dedicated to providing the highest level of care to each family and offers the most current assessment tools and resources. Visit us online for more information and a free download of “Your Child’s Assessment and Diagnosis: a Guide for Parents” by Dr. Moldover.
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Boston Parents Paper | Special Needs Guide
• Stay aware of your own attitudes about a disability, as your children will most likely mirror those attitudes. • Connect with other families going through similar issues. • Seek individual and/or family therapy. • Find a sibling support group. • Develop a plan with kids to help them determine what statements are OK to be shared with neighbors, family and friends, and what things are private. Siblings shouldn’t have to harbor secrets. There’s a difference, though, between secrecy and the family’s right to privacy. • Inform teachers and others at school of your family’s situation so that they can better understand the sibling’s experience. • If a sibling is embarrassed by a brother or sister’s behavior (and perhaps reluctant to invite friends to the home), remind kids that everyone in every family has something to work on. Parents might want to create a plan (which may be a written document) to define the sibling’s role in the family. When they get older, some siblings will have to make crucial and very difficult decisions about guardianship. Growing up with a brother or sister with disabilities also prompts the way siblings will look at important life decisions, such as where to go to college and whether to have children (if there’s a genetic component). Throughout their lives, they will need to examine how to balance their personal lives with their role as siblings. As they do this, they will benefit from the support and encouragement of parents and other caring adults. ✷
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TIPS FOR
Playdates
with Special Needs Kids
P
By Sarah Lyons
laydates are an important part of childhood. They offer time for kids to interact socially without the structure of school or extracurricular activities. They also help kids learn to share, socialize, and play freely while still having support from their parents as needed. Kids with special needs are no exception and benefit from playdates as much as their peers. While they may take a little more planning and patience, it is well worth the efforts for everyone involved. Here are some tips for hosting a playdate with kids with disabilities.
BE OPEN
go to anyone’s house for a playdate.” says Barb WalkerShapiro, mom of six from Omaha, NE. “Her brain doesn’t work like other kids. She may have a seizure and is prone to major meltdowns. I find that when other parents know what’s ‘wrong’ with my daughter, they are more tolerant and compassionate towards her.” It is also a good idea to talk to your children openly about differences they may have with their friends. Explain that just because others may seem different or express their joy differently, it doesn’t mean they don’t enjoy playdates or making new friends as well. Prior to the playdate, it is also a good idea to check in with the other parents about whether there are any food allergies or restrictions and anything important you should know.
Our natural reaction may be to avoid talking about any disabilities a child may have but it is better to address any questions or concerns beforehand so BE STRATEGIC everyone is more comfortable and knows what to expect. Prior to the playdate, discuss with the other parents “I am upfront and honest about my daughter before we about what would be the best location to have the
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playdate. For some, their own home is more comfortable and successful. For others, staying at home may encourage the special needs child to say hello then retreat to their room while company visits. In this case, it may be better to go to a public place that everyone can enjoy, such as a park, museum, or zoo. On the other hand, parents who have a child that is prone to running away or hiding may find a public place overwhelming. Discuss your plans with all the parents involved and come up with the best solution for everyone. Another great strategy is to plan activities that unite the kids. Kids who struggle with talking to peers or sharing toys may find that a common interest helps them feel more at ease. Find out the interests of the kids you are hosting and offer an activity around one that excites all of those invited. Ideas could include a craft, a game, or visiting somewhere that fosters that interest. For example, if they are interested in nature, visit the Overland Park Arboretum or go on a backyard scavenger hunt. If they are interested in tractors and farm animals, visit a farm, such as Deanna Rose.
BE PATIENT Whenever kids are involved, patience is important. Try to understand that kids may have different reactions to situations, things may not go exactly as expected, and that it may take some time for kids with special needs to warm up to the situation. Some children with special needs may prefer to participate in parallel play. Parallel play is when kids play beside each other, but do not interact with one another. Children who play alone during parallel play still enjoy the time together and are usually interested in what the other children are doing. If things do not go as planned, it is okay to cut the playdate short and try again in the future.
BE UNDERSTANDING Parenting is not easy and we all struggle with different challenges when it comes to our children. Ask the parent if they need help with anything prior to the playdate. “I almost always have a few extra things to carry so please don’t be shy about asking if I need help.” says Taylor. “I also need a lot of grace.” Try to be patient and understanding. The other parent may be overwhelmed or tired. It may have been challenging to get there. All parents have great days where everything goes as planned and tough days where it seems nothing does. Listen and offer a hand when needed and they will most likely offer the same in return. The most important tip for having a playdate with a special needs child is just to have them. It may take a little more planning and patience than the average playdate, but it is so worth it to both the parents and kids involved. Playdates offer a great chance for kids to interact with peers and make friends in a non stressful way, and they are also a great time for parents to connect and build each other up as well. Sarah Lyons is a busy mother of six children, including 1 year old triplets.
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BE INCLUSIVE It is most important to note that kids with disabilities or special needs are just like anyone else; they want to interact with friends and be loved and appreciated. When hosting a play date with kids with disabilities it’s important to greet them and interact with them as you would anyone else you meet. “Please say hi to my son. Smile at him, even if he doesn’t smile back.” says Marie Taylor, Olathe, KS mother of two. Even if the child is nonverbal or doesn’t seem to hear you, it is important to speak to them. Angela Leever, special education teacher and mother of three says “Encourage the parents and children to speak to the child with special needs, not about them. If the child with special needs does something your child isn’t happy with or that isn’t appropriate, allow them to use words to tell them. Sometimes that is more powerful than the adults intervening.”
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Helping ADHD Kids
Organize for a Successful School Year
If
you have a child with ADHD, you witness their normal daily struggles. School poses even more challenges when a child is trying to juggle staying organized, getting homework done, keeping track of permission slips, keeping up with hygiene, activities, etc. PsychCentral.com says, “… ADHD affects the very skills that are required for success in school. Kids with ADHD have difficulty getting started, prioritizing, planning, managing their time and emotions, staying on task and focusing... It’s the nature of the disorder, which impairs the executive functions of the brain.” So where do you start when it’s time to head back to school?
Make a fresh start… every month
Start with a massive cleaning session to clear out the clutter from last school year. Clear out the backpack, the closet, the bookshelves. Put regular (monthly) cleaning sessions on the calendar to keep up with the paper monster.
Take ownership
Your child won’t keep up with any system they didn’t help to create themselves. One mom of three
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By Kerrie McLoughlin shared, “… your kid needs to do what works for them--they should be the one to come up with an organizational method.”
Limit choices and decision fatigue
“One helpful tip a teacher told me (and has worked) is less is more. I got my son all these binders with tabs, but she said one simple folder is sometimes more helpful,” says a mom who wishes to remain anonymous.
Color-coded supplies
Dr. Lisa Adams, Ph.D. and school psychologist for 10 years, suggests, “Depending on age, organize and color code binders. Use the same color for all math, etc.” Choose colored binders with clear front/side areas for clear labeling. Staples has a great line of colored 2-inch binders with a large attached pocket in the front cover with customizable front and sides.
Homework
A spot designated just for doing homework and nothing else is key. No phones or other distractions are allowed. Start with the most difficult subjects first, and take frequent activity breaks. Dana
Baker-Williams, mom of X, says, “She and I would set up a quiet place for her to study and set a schedule for homework. She had pens that she could use on her mirror closet doors to write out assignments and due dates. Then she could prioritize better. We’d also break assignments into more bite-size pieces if they were large or long projects.” Dr. Adams adds, “Develop a system of retrieving assignments, a time for doing them, a time for turning them in. Provide continuous parent oversight until system is learned.” If you still need a helping hand, check out the various tutoring services found on our site so your child can catch up, stay on track, or get ahead (https://www.fredericksburgparent.net/guides/tutoring-services). You can help make school more exciting for your ADHD kid by teaching them organization skills, working with teachers for long-term success throughout the coming school year and beyond. These are skills they can use their whole lives to help them out in college, jobs, and relationships as well. ✷ Kerrie McLoughlin (TheKerrieShow. com) is a 40-something ADD writer and homeschooling mom of 5 surviving AND thriving.
ADHD Organizational Tips for Kids
• WORK THAT PLANNER! Commit to 15 minutes each morning to prepare for the day and 15 minutes at night reviewing and thinking about what could have gone differently. Rebelling against the planner is normal; create rewards for sticking with it. (There are a zillion different planners, so review a bunch on YouTube first.) • DO THINGS IN SMALL CHUNKS. Instead of sitting down until you are done with All. The. Math. Homework… try setting a timer for 15-20 minutes and then get up to move around and come back to it. Just don’t wander too far! • NO PAPER EXPLOSIONS. Keep a small notebook with you and transfer the little jots over to that ONE SPOT (the perfect planner)
in a timely manner. This goes for notes created on phone apps as well. If reminders aren’t put in the right place, they are lost forever. • A PLACE FOR EVERYTHING. Once the homework is finished, put the binder/textbook back in your backpack. Keep the backpack in the same spot all the time. File papers in a milk crate system so you always have a spot for them. Once the mess is out of your
brain, you don’t have to worry about constantly losing things and trying to find them again, wasting precious time. • CAN’T STRESS COLOR CODING ENOUGH! Post-it notes and tape flags in various sizes and colors; bins in various sizes and colors; flat drawer organizers; Washi tape for extra personalization; pens, pencils, Sharpies and highlighters they love and will actually use. ✷
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e v i t i e t v e i t p i e t e R RReeppetitive By Lindsey M. Muller
ounger and older humans, like animals, engage in habits, also known as repetitive behaviors. Some human habits include tapping your fingers on a flat surface when thinking, thumb sucking, tapping a pencil on a desk during a test, shaking your foot when your ankles are crossed or twirling your hair. There isn’t anything wrong with regularly demonstrating these actions. In most cases, minimal attention is given to these habits or “quirks.” Yet, some of the same behaviors, when repetitive and excessive, can cause interference with everyday functioning and cross over from being just a behavior to being a diagnosable mental health disorder – a pattern of behavioral or psychological symptoms that impact multiple life areas and/or create distress for the person experiencing the symptoms. Because children are less aware of others’ perceptions
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Children and adolescents who are seen regularly in skin picking, nail biting, hair pulling, lip biting or cheek biting, whereby there are physical and visual ramifications, are technically demonstrating a body-focused repetitive behavior (BFRB). and societal norms, parents are likely to be the ones experiencing distress or negative impact as a result of a child’s behavior. Children and adolescents who are seen regularly in skin picking, nail biting, hair pulling, lip biting or cheek biting, whereby there are physical and visual ramifications, are technically demonstrating a body-focused repetitive behavior (BFRB). BFRB is a catch-all category for impulse-control behaviors causing damage. Research and public awareness of mental health disorders in children tends to be focused on attention-deficit/hyperactivity disorder (AD/HD), obsessive compulsive disorder (OCD) and anxiety disorders; therefore it’s helpful to compare and contrast with these disorders when discussing BFRBs. BFRBs may cause difficulties with focus and concentration because the behavior can be distracting. While this mirrors one symptom of AD/HD, a BFRB is not AD/HD. A BFRB is expressed through compulsive behavior. Yet it is not the same as OCD because OCD is diagnosed as a result of engaging in behaviors to get away from anxiety; one struggling with a BFRB may not report feelings of anxiety. This is what also differentiates a BFRB from an anxiety disorder. So, while some disorders can have overlapping symptoms, being diagnosed with the right disorder has important implications for treatment for your child.
Here are some things parents can look for to know if a child is expressing a BFRB: • Look for constant hair stroking, touching or twirling because this may (but not always) be a warning that hair pulling is on the horizon. Scan your child’s body and scalp (bath time is a great opportunity) for scabs, pick marks or bald patches. • Red, peeling or bleeding lips can be an indication of lip biting or excessive licking. • Does your child seem to be holding things in, burdened or appear to have mood swings? If yes, encourage your child to express her emotions. In discussing emotions, pay attention to how well your child is able to name and share her emotions based on what is developmentally appropriate. Make sure your child knows what different emotions are and what they may feel like. Pictures, stories and movies can serve as a clear example of how to demonstrate those emotions. Encourage expression, which can be done verbally or through art and play. BFRBs can develop to regulate emotion or self-soothe. • Does your child seem to be overly annoyed, reactive or distracted by lots of visual stimulation or sound in the environment? In many cases, there is a sensory component to skin picking, nail biting or hair pulling, for example. When seeking a diagnosis, while pediatricians are familiar with these behaviors, it may be best to find a
BFRB specialist. Do not seek medication as the first, line of defense. In most cases, an antidepressant/ antianxiety medication seems to strengthen or magnify the behavior instead of help. Some children and teens grow out of the behavior, while others do not. Typically, the younger the child at the time the behavior started, the more he is likely to grow out of the behavior. It is important to take the issue seriously and find someone who can offer effective treatment. Proper treatment approaches include behavioral therapy, cognitive behavioral therapy and acceptance and commitment therapy. For younger children, behavioral therapy, art therapy and play therapy are great places to start. Most children and teens do not understand why this behavior is happening, when it started or how to stop. By remaining patient, loving and supportive, your child will be able to work on addressing the BFRB in an encouraging and hopefully stress-free environment. ✷ Lindsey M. Muller, M.S., LPCCI, is a mental health therapist and BFRB coach. A former skin picker, nail biter, and hair puller, Lindsey works with parents of children, adult clients and adolescent clients who struggle with a BFRB, OCD and other anxiety disorders, and disordered eating. She is the author of a psychology memoir about BFRBs titled Life is Trichy (Mindful Publishing Co., 2014).
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HEALTH & WELLNESS
Yogafor Children
with Special Needs
W
By Teresa Mills-Faraudo henever four-year-old Dylan, who has been diagnosed with autism, starts having an anxiety attack, he stands on his head. Suddenly, this stressed-out preschooler is calmer. His mother Jennifer was willing to try anything to help her son. Dylan can’t speak or understand what others are saying. When someone suggested yoga, she brought him to Vanessa Kahlon, M.A., executive director and founder of Yoga Education for Autism Spectrum. “It was amazing to see that within an hour of working with her, he was relaxed,” Jennifer says. “She taught him how to self-regulate.” More and more parents who have children with special needs are turning to yoga. Some research connects the practice to improvements in children with ADHD, autism, asthma and irritable bowel syndrome. Studies show it can be helpful for conditions that are worsened by stress and anxiety. Dylan goes to yoga classes once or twice a week and also uses what he learns regularly at home. When he feels anxiety coming on, he knows to go into a yoga pose to ease his stress. “He can’t communicate his wants and needs, so he has high anxiety when things can’t go his way,” she says.
“It’s like being in a foreign country and not knowing the language for him.” Kahlon, who primarily works with autistic and visually impaired children, says she focuses on teaching kids breath work, social skills, language skills and learning how to focus. “It helps a lot with confidence and body awareness,” she says. “It comes down to trusting their own body.” There are certain poses, Kahlon says, that can be especially beneficial for her students. The “Tree” pose, for example, helps with balance since the child stands on one leg. The “Downward Dog” pose can be good for body awareness because it requires specific feet and hand placement. “Warrior” pose can benefit kids craving movement and sensory/motor stimulus. For Raj Sidharthan’s 9-year-old daughter, Olivia, who has highfunctioning autism, yoga helps with self-regulation when she’s upset. As someone who has practiced yoga since his childhood in India, Sidharthan was not surprised that it helped his daughter. “It’s been challenging to get her to do it every day, but now she’s more focused,” he says. “She finds a lot of enjoyment in doing yoga. We can put on the music and she can do it on her own.” continued on page 28 >>> Special Needs Guide | BostonParentsPaper.com
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What the Studies Say
According to studies, yoga may help reduce stress by balancing the production of neurotransmitters in the brain. It has also been shown to improve oxygen levels and increase lung capacity because of the deep breathing techniques. It may be why yoga can help children with attention problems control their impulsivity and hyperactivity. Yoga can also be beneficial for children with lung disorders like asthma, cystic fibrosis or any chronic airway inflammation, says John Mark, M.D., a pediatric pulmonary physician. Mark, who has an interest in nonconventional therapies for children with chronic disorders, recommends yoga for many of his patients. “Any time you can get children to stretch and use their posture it can help with their health and anxiety,” Mark says. “It’s a way to learn how to relax and focus.” He says that studies have shown that yoga is helpful for kids with behavioral issues and has improved focus in kids with ADHD. But Mark believes yoga can help children with any disorder. “Most doctors don’t recommend exercise to their patients. I think physicians turn to medications first because that is how they are trained,” Mark says. “It is a lifestyle change that can really help. It can really lower the severity of an illness.”
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However, parents should bring their kids to yoga instructors who are trained to deal with children who have special needs, he says. Some hospitals have instructors on site or there are teachers like Kahlon who work regularly with children. Caron Bush, a physical therapist and board-certified clinical specialist in sports physical therapy, teaches yoga and pilates classes for children, including kids with autism, ADHD, Asperger syndrome and physical injuries. While most yoga classes for adults involve little if any conversation, Bush says she likes to talk with her students because it makes them feel like they’re in a safe place. Once the kids start talking to her, they usually feel more relaxed and able to do the poses. Students’ self-confidence, focus and flexibility seem to improve for those who take the classes regularly, Bush says. “I think yoga is an easy thing to do because there are a lot of stretches that are very basic,” she says. Jennifer hopes other parents consider signing up their kids for yoga. “It allows them to use their brains differently. You hear ‘yoga’ and think, how can this help my kid? But parents need to just think of it as therapy through movement.” ✷ Teresa Mills-Faraudo is an associate editor of a parenting magazine.
By Kimberly Baker
Mental Health Care Providers – Finding a Quality, Knowledgeable Therapist
“AT LEAST 100 MILLION PEOPLE CURRENTLY LIVING IN THE UNITED STATES WILL, AT SOME TIME IN THEIR LIVES, EXPERIENCE PROBLEMS IN RELATIONSHIPS, become depressed, or develop anxiety so serious that they will merit psychiatric diagnosis and would benefit from the services of a mental health care professional,” according to Larry E. Beautler, Bruce Bongar and Joel N. Shurkin in A Consumer’s Guide to Psychotherapy: A Complete Guide to Choosing the Therapist and Treatment That’s Right for You. continued on page 30 >>> Special Needs Guide | BostonParentsPaper.com
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As a consumer, do your research to assure the validity of your diagnosis or form of therapy or treatment. If you discover contradictions from reputable sources, discuss it with your therapist. Should your child be faced with such a crisis, know how to find a reputable mental health care provider with the expertise you need and that you can trust.
Finding a Trustworthy, Reputable Therapist Most mental health care professionals adhere to ethical guidelines but, as with any field, there are always a few bad apples. Know how to screen. Begin your search by asking family or friends for recommendations or check out the local resources on the next page. Phone three or four therapists and ask about their credentials, policies and treatment methods. You should ask the following questions: • What are your areas of expertise? • How much experience do you have with my particular issues? • Are you licensed or certified by the state? • Has your license ever been suspended or revoked? If so, can you tell me about the situation? • What are your professional affiliations? • What forms of treatment and therapy do you provide? What evidence is there to support its effectiveness? Is there controversy among mental health care professionals regarding this treatment? • What are your fees? Do you accept my insurance or work on a sliding scale? If you can’t get answers to these basic questions over the phone, look elsewhere. If you’re satisfied with the therapist’s responses, check with your state licensing department to verify the license status and to make sure no actions have been taken against the therapist.
Evidence-Based Practice Once you begin therapy, complications still may arise. According to Beautler, Bongar, and Shurkin, therapists who base their beliefs on personal experiences often reject scientific findings that don’t coincide with their beliefs. As a consumer, do your research to assure the validity of your diagnosis or form of therapy or treatment. If you discover contradictions from reputable sources, discuss it with your therapist. It
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may be a simple misunderstanding or data of which your therapist was not aware. If your therapist rejects the information, ask why and determine if the reason is valid or is based on personal opinion. If it’s preventing you from obtaining a proper diagnosis and/or treatment, find a therapist that recognizes those findings. Though rare, unethical therapists have been known to misdiagnose for financial gain. More commonly, those with questionable practices may recommend unnecessary, inappropriate, outdated or unproven treatments. That said, “Your therapist is obligated not to take advantage of you, either intentionally or unintentionally through negligence or ignorance, and to act only in your best interests,” explain Jack Engler, Ph.D., and Daniel Goleman, Ph.D., in The Consumer’s Guide to Psychotherapy: The Authoritative Guide for Making Informed Choices About All Types of Psychotherapy.
Mental Health Care Ethics There are certain rules set by state licensing divisions as well as the American Psychological Association and other mental health associations that providers must follow. Some serious ethical violations you should be aware of are that mental health care providers may not: • Disclose information about you without prior written consent or even verify that you are being seen by the therapist except under certain situations, such as when child abuse is reported; • Suggest that you do something that is undeniably harmful, immoral or illegal; • Treat you for or offer services that are outside his or her area of expertise; • Offer experimental or unproven therapies without informing you of such; or • Degrade you because of your values or problems or pressure you to change them.
Handling Ethics Violations and Negligence If you feel your rights have been violated or your therapist has treated you with negligence, there are several options according to Engler and Goleman. If the violations are minor, you might want to discuss the problem with your therapist. You can
also seek a second opinion to determine whether it’s a misunderstanding or a valid complaint. If your complaint seems valid and is serious enough to warrant such, you can file a formal complaint with the appropriate ethics committee or with the state licensing or certification board. This is an important step if there’s concern that someone else might be harmed by the therapist’s practices. Finally, if your therapist acted negligently rather than simply unethically, a civil malpractice suit may be in order. Remember, most people have positive experiences with their therapist. Just be aware of unforeseen problems and take precautionary steps, and you’ll avoid the risk of a negative experience. ✷ Kimberly Blaker is an author and freelance writer.
MENTAL HEALTH CARE RESOURCES Arbour Health System – 800-222-2237; www.arbourhealth.com Cambridge Health Alliance – 617-665-1372, 617-665-3458; www.challiance.org Federation for Children with Special Needs – 617-236-7210; www.fcsn.org Massachusetts Department of Mental Health – 800-221-0053; www.mass.gov/eohhs/gov/departments/dmh McLean Hospital – 800-333-0338; www.mcleanhospital.org New England Center for Mental Health – 978-679-1200; www.nementalhealth.com Riverside Community Care – 781-320-9136; www.riversidecc.org
Special Needs Guide | BostonParentsPaper.com
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Executive Functions
CHILDREN ARE APT TO FORGET TO REMEMBER By Kat Marsh, M.Ed.
Executive functions are a collection of mental processes that guide our everyday actions and help us plan for the future. Think of them as the characteristics and behaviors a person in charge of running a company would need to succeed. Some executive functions help us pay attention and remember details, others help us organize our thoughts or the physical space we live in, still others help us figure out the best way to solve problems or plan what we should do next. Researchers are trying to sort out and define executive functions with names such as metacognition (thinking about thinking), working memory (visual or verbal information we hold onto while weâ&#x20AC;&#x2122;re making decisions), response inhibition (holding back unfruitful reactions), and task initiation (getting started on non-preferred tasks). Some figure we have eight or ten distinguishable executive functions. Others suggest there could be more than thirty. Although all executive functions interact and some overlap, we can make sense out of most executive functions by categorizing similar ones together into four groups:
GROUP ONE IS WHAT I CALL THE STP GROUP: SPACE, TIME, AND PLANNING. This group has to do with keeping physical space organized, having a sense of the sweep of time, and planning that has to do with time management. Caution: organized space can look messy to another person. The key factor is whether the organizer can work effectively in the space. For children, these spaces are typically their homework space, backpack, and locker. If your childâ&#x20AC;&#x2122;s spaces look messy, but they know where everything is and can find things they need, then they have some kind of organization scheme that makes sense to them. Sensing the sweep of time means being accurate when estimating how much time a task will take, and as you work, gauging whether you need to speed up to finish.
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GROUP TWO IS THE GET UP AND GO GROUP. This group has to do with getting started on your work, keeping your attention focused on the work, and sticking with a goal that you work at little by little, like saving up money over several weeks to buy a toy or game.
GROUP THREE IS THE HOLD ON! GROUP. This group has to do with holding back knee-jerk responses and being aware of when your emotions are getting out of control so you can pause and calm down.
GROUP FOUR IS THE PROBLEM-SOLVING GROUP. This group manages your working memory, your ability to think flexibly, and your ability to step back and look at your overall progress. Executive functions can be assessed using both formal and informal methods. Formal assessments were designed for clinical use with adults and test language, memory, and motor skills. Informal assessments were designed to uncover information about naturally occurring behavior in an everyday environment. With formal methods some tests to measure one executive function can mask other executive functions. For example, test items are often presented in brief groupings that may mask sustained attentional issues. INFORMAL ASSESSMENTS
CAN BE USED TO SUPPLEMENT FORMAL ASSESSMENTS, AND ARE OFTEN PREFERRED BECAUSE THEY MAY REVEAL MORE ABOUT HOW YOUR CHILD FUNCTIONS IN EVERYDAY LIFE. Two components of the assessment process are
important to consider: standardized behavior rating scales and classroom observations. Parents, teachers, and sometimes the child, can be interviewed, or can fill out a structured interview form for behavior rating scales which provide a statisticallynormed comparison to highlight areas of concern. They gauge how well your child’s environment and behaviors may be contributing to struggles with executive functions and can be a starting point for developing interventions. CLASSROOM
OBSERVATIONS, CONDUCTED BY A TRAINED OBSERVER, CAN PROVIDE MORE OBJECTIVE VIEWS OF YOUR CHILD IN THE CONTEXT OF THE DEMANDING ENVIRONMENT OF THE CLASSROOM. Observations can be reviewed to select interventions that will be most effective for your child in different types of classroom situations. For example, your child may need more guidance during less structured times like gym or lunch. Executive function assessments will generally provide information on attention, working memory, organization, concept formation, and flexible thinking. A CHILD’S ABIL-
ITY TO PAY ATTENTION IMPACTS ALL AREAS OF LEARNING—NOT ONLY ACADEMIC, BUT PHYSICAL AND SOCIAL AREAS AS WELL.
Some childhood daydreaming is to be expected, but moderate inattention may impact your child’s success when teachers are giving instructions or when chatting or playing with peers. A CHILD’S ABILITY TO
HOLD BACK FROM AUTOMATIC RESPONSES, OR PAUSE BRIEFLY
TO THINK BEFORE ACTING IS TIED TO SELF-CONTROL. Although self-control takes time to develop, it is important when children must assess a new situation and consider the correct or most effective way to respond.
WORKING MEMORY MAKES IT POSSIBLE TO HOLD ONTO INFORMATION TEMPORARILY IN ORDER TO PUT IT TO USE. If a teacher gives a three-step instruction, your child may lose track of where she is in the sequence, resulting in frustration or anxiety. Planning, sequencing, and organizing information are essential for learning new information, for problem-solving, for completing tasks efficiently, and for participating in complex discussions. Concept formation is the ability to categorize items based on what they have in common, select items that are different and explain why, and figure out patterns or relationships between items. If your child cannot readily see relationships between items, he will struggle to link new ideas with what he already knows. Concept formation is also the basis for more abstract thinking. FLEX-
IBLE THINKING MEANS YOUR CHILD CAN SHIFT FROM ONE TASK TO ANOTHER OR BE OPEN TO A CHANGE IN PERSPECTIVE WHEN LEARNING NEW INFORMATION. If your child can think flexibly, she can see new ways of doing things, or be willing to think of or try out a new solution to a problem. Speaking of solving problems, in part two we will look at how to support your child’s executive functions. continued on page 34 >>> Special Needs Guide | BostonParentsPaper.com
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Executive Functions DOWN THEY FORGOT AS UP THEY GREW By Kat Marsh, M.Ed.
As your child grows and develops, his executive functions will develop along with him. Executive functions continue to develop into early adulthood, so it’s never too late to raise your expectations of what your child may be able to do in this area. YOUNG CHILDREN AGES 3-4 SHOULD BE ABLE TO FOLLOW A SIMPLE DIRECTION SUCH AS, “GET YOUR COAT,” OR, “PUT THESE TOYS IN THE TOYBOX.” They should be able to hold back from touching a hot stove or hitting another child. Over the next few years and into first grade, your child will expand on those skills by carrying out simple two-step or three-step instructions, and recalling safety rules. With some reminders, your 5-7-year-old can carry out more generalized chores such as, “make your bed,” or, “unpack your backpack,” because they will be able to sequence the specific details on their own. Children this age will begin to sense the sweep of time, understanding that if they get out of bed late, they will need to speed up their morning routine to get to school on time. With some reminders, they will be aware of papers that need to be brought home and some that need to be brought back to school. By the time your child is well into elementary school, between 8 and 11 years old, she should be able to work more independently with chores, keep track of belongings, and recognize when best behavior is required. Children at this age will also experience and learn to manage days with different schedules, unexpected changes in schedules, and assignments that require some
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planning such as selecting a choice book to read or creating a poster with printed pictures, drawings, and words. At this age your child’s ability to get started on homework, stick with it until it’s done, or ask for help when needed are signs that executive functions are in the process of developing. PRE-
ADOLESCENT CHILDREN MAY TRY OUT DIFFERENT SYSTEMS FOR ORGANIZING SCHOOLWORK, AND RECOGNIZE THE NEED FOR PLANNING AFTER SCHOOL TIME, BUT THEY MAY NEED REINFORCEMENT OR SOME TRIAL-AND-ERROR TO FULLY EMBRACE THESE SKILLS. Preadolescents are also developing their sense of how to manage themselves when they are away from adults, such as when babysitting or when their teacher is temporarily out of the classroom. By the time your child enters high school, he should be ready to take on more complex tasks such as managing a varying workload of homework, projects, upcoming tests, and after school activities. He should recognize social situations where recklessness or taking risks is too dangerous, and he should start thinking about longer term goals such as developing plans for after high school. Executive functions will continue to develop and be refined as your child moves beyond high school, but be on the
lookout for a progression of skills, and prepare for setbacks along the way.
TO SUPPORT YOUR CHILD’S DEVELOPMENT OF EXECUTIVE FUNCTIONS, CONSIDER PLANNING EARLY FOR A GRADUAL HANDOFF OF RESPONSIBILITY, AND ALLOW FOR BOUTS OF TRIAL-ANDERROR. One of the most helpful
supports for a child is the time you take to reflect briefly on what’s working and what’s not working for your child and your family. Caution: aim for a truly reflective discussion, rather than jumping right to a lecture about how you think your child should manage things. It’s important for a child to have the benefit of their own experiences along with tales of your struggles and successes. It can take three times as long for a three-year-old to put on and zip his own jacket, rather than having you do it for him, but the experience is worth the time. Consider how to further your relationship with your child around executive functions. CHILDREN
WHO ARE WORKING ON OR STRUGGLING WITH EXECUTIVE FUNCTIONS BENEFIT FROM KNOWING THAT YOU RECOGNIZE THEIR STRUGGLE AND THEIR EFFORTS. Acknowledge the current situation and try to keep discussions focused on the future.
Tell them about how you struggled to organize your backpack or desk. Then, instead of telling them what you think they should do, ask them about some possible things they think they could do. Once they start thinking about solutions, you can offer some suggestions of your own. Another important consideration is the language you use when talking to your child about executive function struggles. If you are frustrated or worried about whether they have completed their homework, you might ask, “Did you do your homework?” Even if you say this in the most comforting and solicitous tone, it may sound like an accusation to your child, resulting their anxiety or frustration. Instead ask, “Did
the homework get done?” Now, you have removed the possibility of direct accusation and raised a joint concern along with your child about the homework. Oh, the poor homework, did it get done?
LANGUAGE CAN HELP CUE YOUR CHILD TO DEVELOP HER EXECUTIVE FUNCTIONS. INSTEAD OF TELLING YOUR CHILD WHAT TO DO, ASK HER WHAT OR WHEN SHE PLANS TO DO SOMETHING. “Clean out your backpack now,” becomes, “When would be a good time to clean out your backpack?” If you cue them to know what to do by themselves, it becomes easier to follow up without a confrontation because, “you didn’t do what I told you to do,” is going to lead to an
argument, but, “you didn’t do what you said you were going to do,” will lead your child to follow through on her own promises. If reinforcement is needed, you can always ask, “How can I help you with your task?” You avoid a direct confrontation, and emphasize that they are capable, and you are supportive. You may have to guide them through the initial step to get them started. Afterwards, you can revisit and talk about what they think worked and didn’t work and what they might do differently next time. As they grow, they will benefit from these initial experiences developing executive functions that will serve them well in the future. ✷ Kat Marsh teaches study skills at Commonwealth Learning Center in Danvers.
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SPECIAL EDUCATION
A REFERENCE GUIDE FOR PARENTS
Addressing Challenging Behavior and How it Relates to the IEP Process By Dana Howell Board Certified Behavioral Analyst Easterseals Massachusetts ABA Services | Rehablitation Services Department
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hen you have a child with academic, social, or behavioral challenges, providing them with the correct supports can be an overwhelming and confusing process. How do you ensure that teachers and therapists effectively meet the needs of your child? For many families, the creation of an Individualized Education Plan (IEP) accomplishes this goal. An IEP is a legal document that outlines the specific supports, services, and instructional methods a child needs to make meaningful progress in a school setting. If your child also engages in challenging behavior, additional supports, assessments, and written plans may be necessary. These documents provide the educational team with a structured protocol, ensuring that they work collaboratively to reduce challenging behaviors, teach functional replacement behaviors, and assist with creating an optimal learning environment for your child.
WHAT IS AN FBA? A Functional Behavioral Assessment (FBA) is the first step of the behavior evaluation process. Typically, an FBA is conducted after the classroom teacher or a related service provider identifies concerns about the frequency or intensity of certain behaviors. The goal of an FBA is to describe a child’s challenging behavior, discover the reasons why those behaviors are occurring, and to develop a plan to teach adaptive alternatives to those behaviors.
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Once concerns have been raised, a Board Certified Behavior Analyst (BCBA) will conduct a FBA. They will gather information systematically through both direct and indirect measures. Direct measures include observations and data collection. ABC data collection is a direct measurement tool that evaluates the antecedents (i.e. what happened before a behavior occurred), behavior (i.e. what the child did), and the consequences (i.e. how the adult responded) in relation to challenging behavior. ABC data indicates the factors that influence behavior and helps discover why a particular reaction may occur. In addition to ABC data, the evaluator completes several observations of the child in his or her natural environment. The purpose of conducting an observation is to watch and document behavior as it is happening. Direct observation allows the BCBA to see, not only the frequency and severity of the behavior, but also the antecedents and consequences that impact each situation. BCBAs also use indirect measures which often include informal rating scales, parent/ teacher/therapist interviews, and a review of the child’s records. Each of these indirect measures allows the people who know the child best to contribute information about why a particular behavior occurs. The information collected during the FBA process helps to answer the question “Why are challenging behaviors occurring?” After assembling the relevant information
An IEP is a legal document that outlines the specific supports, services, and instructional methods a child needs to make meaningful progress in a school setting. and reviewing it thoroughly, the BCBA will identify the reasons why behaviors are occurring. The information from the FBA is then used to create a Behavior Intervention Plan.
WHAT IS A BIP? A Behavior Intervention Plan (BIP) is a set of protocols aimed to address a child’s challenging behavior. This document provides the educational team with a consistent set of written strategies to use on a day-to-day basis with a child. The first step is to describe, in detail, the child’s challenging behaviors. It is important to write these descriptions in a way that explains what the behavior “looks like.” This ensures that the behaviors can be easily tracked and recorded by the educational team. In addition to behavioral descriptions, the BIP also includes antecedent-based interventions, adaptive alternatives to challenging behavior, a reinforcement plan, and consequence procedures. Antecedent-based interventions are strategies designed to stop a behavior before it begins. Some examples include the use of visual supports, transitional warnings, and the arrangement of the environment. Replacement behaviors are behaviors that provide a functional alternative to challenging behavior. For example, children who engage in escape-maintained behavior are often taught to request a break. Asking for a break is a functionally equivalent request. It allows the child to escape from the
task briefly but also ensures that they return to work once the break is over. Designating a reinforcement system is another essential aspect of a BIP and ensures the delivery of positive praise or rewards in response to desired behaviors. When appropriate behaviors are rewarded in a positive way, it increases the likelihood of appropriate behaviors recurring in the future. The final section included in a BIP is a list of consequence procedures. This list provides staff with consistent responses to challenging behavior. Having an outline of procedures decreases the opportunity for accidental reinforcement of challenging behaviors. A well written BIP will ensure your child’s success in developing adaptive alternatives to any challenging behavior.
HOW DO THESE DOCUMENTS RELATE TO THE IEP PROCESS? Functional Behavioral Assessments and Behavior Intervention Plans are both legal documents and are individualized for each child. Frequently, when an FBA and BIP are completed, the team will also develop an IEP goal area that focuses on behavior. A behavior goal area ensures the teaching of replacement behaviors, the use of data collection systems, and progress monitoring. If you feel that your child’s behavior impacts their progress in school, you may want to request a Functional Behavioral Assessment to gain more information about the reasons why those behaviors are happening in the first place. ✷
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Knowing When You Should Request a Third Party Evaluation By Paul Medeiros OTR/L President & CEO Easterseals Massachusetts
D
uring the Individualized Education Plan (IEP) creation process, it is not unusual for a parent to disagree with a recommendation from one or more of the school’s team members. If a compromise cannot be reached, there is a risk that this difference in opinion can lead to an IEP not being signed by one or both sides. Since the ultimate goal of the IEP is to ensure that your child receives the services they need to succeed, it is in your best interest to understand all of your options. However, before determining your best course of action, you need to understand the basis for the disagreement. The more effectively you can evaluate the situation objectively, the better you can advocate for services.
WHY IS THE IEP TEAM MEMBER MAKING THIS RECOMMENDATION? While there can be exceptions, most educators and professionals have your child’s best interests in mind. If you do not agree with the recommendations of the professional it can be easy to assume that there are other factors that are impacting their recommendation such as budget constraints or personality conflicts. It is important to note the professionals assessing your child are making recommendations that they believe are appropriate based on their education and experience. As trained professionals they will work with you and the team to establish measurable goals that your child will be able to meet, and ideally throughout the course of treatment frequency of services will decrease and potentially even stop. Another factor to consider is that the IEP team may be seeing different results than you see at home. It is not unusual for children to behave and perform differently in different environments. Your Oc-
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cupational Therapist may be watching your child cut or write effectively at school while they refuse to even pick up a pair of scissors at home. After a long day at school, it is not uncommon for children to rebel against more work with the people they love and trust the most.
WHY DO YOU FEEL THE RECOMMENDATION IS NOT APPROPRIATE? If it appears that the IEP team is not willing to compromise on their recommendation, it is in your best interest to examine exactly why you feel it is inaccurate. Many parents have to work hard to get their child onto an IEP, and it is completely natural to be nervous about giving up services. Make sure that you can clearly explain the areas that you feel your child needs assistance. If you can give examples that will only strengthen your case to the team, or at the least give them the opportunity to explain why they disagree. It’s important to relay your concerns as professionally as possible to prevent the team from becoming defensive. An effective IEP meeting is a collaborative process! You are an important part of this team and your opinions and insights matter.
IS IT TIME FOR ANOTHER OPINION? Sometimes after all of this consideration and discussion, you still cannot come to an agreement. Unfortunately, at this point both sides are probably a bit frustrated and compromise has become unlikely. As the parent, you should not sign an IEP that you feel does not meet your child’s needs, so what do you do? If this is your first time going through this process, it can be intimidating to stand up to a team of teachers, administrators, and therapists. All too often, at this point a parent will either
It is important to note the professionals assessing your child are making recommendations that they believe are appropriate based on their education and experience. give in or seek legal counsel to protect their childâ&#x20AC;&#x2122;s rights. There is third option. This is the perfect opportunity to request a third-party evaluation. A third-party evaluator should be an individual or organization that is not related to the school or parent. The school district is responsible for contracting and paying for the evaluation. This contracted individual will perform an unbiased evaluation and make a recommendation to the entire IEP team based on the findings of that assessment.
WILL YOUR SCHOOL DISTRICT AGREE? Assuming the clinician and administration believe in the recommendation, it is actually beneficial for them to pursue a third-party evaluation. The role of the evaluator is not to take sides. As a parent, you should also be prepared for the possibility that the evaluator will agree with the recommendation in the IEP. At that point, you can feel comforted by the fact that your child is making progress towards their goals. On the other hand, if the evaluator does not agree with the recommendation, it will be harder for the school district to remain inflexible. While there is a cost to pursuing a contracted evaluator, even that should not be a barrier to obtaining one. The cost of a one-time evaluation will be far lower than the time investment and cost of entering mediation or other legal dispute. Most school administrators will understand this and approve the evaluation rather than choosing to engage in a legal battle.
The Educator or Clinician may also value another opinion. Often teachers, doctors, and therapists are thought of as knowing everything, but this is not the case. More importantly, they realize this and the best will welcome an opportunity to have their assessment validated by an outsider. In addition, if the IEP team member is inexperienced, they may truly value the opinion of a more experienced professional. Particularly in smaller districts, it is not unusual for a therapist to be the only one in the district. If this is their first job, they may benefit from the mentorship that a third party evaluator would provide without feeling threatened.
CONCLUSION In the end, an effective IEP team will have one goal in mind: To collaboratively develop a plan to ensure the child has all of the resources in place to maximize success. Like any effective team, disagreements will occur, but how those disagreements are resolved will be the difference between a positive and negative outcome. As a parent, it can be difficult to balance your role as advocate for your child with trusting and respecting the opinions of the professionals at the table. Sometimes getting an unbiased opinion can provide you the reassurance you need to accept a recommendation, or provide the support you need to be an even stronger advocate. â&#x153;ˇ Special Needs Guide | BostonParentsPaper.com
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Every Child Can Succeed Understanding the Special Education Process and Feeling Positive About Support Received in a School Setting By Andrea Freeman, PT, DPT & Tiffany Palenscar, PT, DPT Doctors of Physical Therapy and Mothers of Two
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s parents, we are always asking ourselves these types of questions and worrying about each step in our children’s lives. Each child learns differently, which may mean that additional support in school is needed in certain areas. If this is the case, your child’s teacher or a school administrator may discuss having your child evaluated for special education services with you. At the first mention of these words, you may feel nervous, overwhelmed, or even angry as a parent; however, special education services were created to help children succeed in school and should not be considered a negative or scary experience. By knowing what to expect, it can help to minimize these confusing or negative feelings when it comes to special education services in school.
WHAT ARE SPECIAL EDUCATION SERVICES IN SCHOOLS? The Individuals with Disabilities Education Act (IDEA) is the law that ensures all children receive free appropriate public education (FAPE). Special education services are provided under IDEA and are required to be individualized. Special education is created to be specific to each student’s needs and is not a “one size fits all” type of program. A child qualifies for special education services when he or she has a disability that impacts their ability to access the school curriculum or environment. If your child qualifies for special education, an individualized education plan (IEP) will be created in order to implement goals and accommodations to help your child succeed.
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WHAT ARE THE FIRST STEPS? You will receive a consent form from your child’s school asking for your permission for the school staff to complete a formal evaluation in one or more areas to help determine if your child is eligible for special education services. Once you return your signed consent forms to the school district, the specialists in the school will schedule their assessments and proceed with testing. The specialists will complete reports summarizing the results of the evaluations as well as provide recommendations in each specific area. Based on the results of the initial evaluations, you will meet with the school district to discuss the results and determine if services, accommodations, or interventions should be provided to ensure your child has the best possible opportunity to succeed in school.
WHAT AREAS WILL BE EVALUATED? The school district will propose specific areas for evaluation to assess your child’s needs and guide their recommendations for support. Educational assessments completed by the classroom teacher, special education
A new school year can bring feelings of excitement, but for some families it can also bring anxiety and stress. team, school psychologist, or reading specialists will give the team information regarding your child’s academic performance and participation in the school day. Related services, such as Speech and Language Pathology, Occupational Therapy, Physical Therapy, Vision, or Applied Behavior Analysis may be included in the evaluation plan depending on your child’s individual need.
regarding goals and objectives to be addressed for a period of one year. The IEP will outline the frequency and duration in which the special education services will be provided. The team will also include information regarding any necessary accommodations and modifications to the school or classroom environment in order to ensure that your child has the ability to successfully participate in the school curriculum.
WHAT HAPPENS WITH THE RESULTS OF THE EVALUATIONS?
WHAT HAPPENS NEXT?
Once all assessments have been completed, you will be sent an invitation for a team meeting by the school district where you will sit down with your child’s teacher, the specialists who completed evaluations for your child, and special education or school district staff. During the meeting, you will discuss as a team the results of the evaluations. As a parent, you are a full member of the team and you will have the opportunity to provide input, ask questions, and share your child’s strengths. Your participation in the team meeting is incredibly important. As a parent, you can provide information to the school team that is necessary for your child’s success. Together, it will be determined if your child has a disability that is impacting their ability to make progress with the school curriculum and if specially designed instruction is needed for success. If it is determined that your child qualifies for special education services, the group will work together during the team meeting to develop an IEP.
WHAT IS AN IEP? The IEP is a document that outlines the specific program created for your child during the team meeting. The IEP document will contain information regarding your child’s strengths, current performance in school, placement information, and specific recommendations
Based on the outcome of the team meeting, an IEP will be developed by the school district. The document will be sent to you within 10 days for your review. If you agree with all of the information and recommendations included in the IEP, you will sign that you accept the document and return it to the school district. The IEP will then be implemented by the educational team once it is received. If you do not agree with the IEP or feel that changes need to be made, you are able to reject a specific portion or the IEP in its entirety. In this case, the team would reconvene to establish a plan that all members of the team support. Once the IEP is finalized and accepted, it will be your child’s specialized plan for one full year. The team will then meet again annually to update the document. As parents, we want our children to succeed in every way possible. When our children struggle in school, it can often feel overwhelming and discouraging. Working with the school district to support your child’s individual needs can help alleviate some of these feelings. Special education services are meant to ensure that your child will receive the tools and support needed to be successful and empower your child to achieve their greatest potential. Remember that you are a vital member of your child’s educational team and will be included in the process from beginning to end. ✷
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Transition Assessments
What are they? Why are they beneficial? By Mary Ellen MacRae, Director of Community Support Services Transition & Employment Services, Easterseals Massachusetts
WHAT ARE THEY? Transition Assessments are most commonly performed when a child has an IEP (Individual Education Plan) or a 504 plan. By Federal law the transition age begins at 16 years old but in the state of Massachusetts it begins at 14 years old. When students reach the age of 14, they are given the Transition Planning Form (TPF). The student and his or her team then focus on establishing transition goals to assist in preparing for life after high school. The TPF is used to assess the studentâ&#x20AC;&#x2122;s ability to determine his or her strengths and weaknesses, how they inter-
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act with others in school or in their community, their decision-making process on personal or work tasks, their career interests, and independent living skills. Transition assessments are tailored to meet the studentâ&#x20AC;&#x2122;s level of comprehension and are age specific.
WHY ARE THEY BENEFICIAL? It is incredibly important for individuals with disabilities to feel independent and be seen as an equal in their working environment and in their community.
Transition assessments are tailored to meet the student’s level of comprehension and are age specific. Parents need to remember that the support their child receives in school will change in post-secondary education and in employment. It is important that your child becomes an active participant in his or her IEP team. As your child matures some skills that are important have in mind and nurture are the following:
SELF-ADVOCACY AND SELF-DETERMINATION. These are two important skills that should be instilled early on in a child’s life. Research performed by the National Center on Secondary Education Transition (NCSET) (Wehmeyer & Schwartz, 1997) followed youths with developmental delays or learning disabilities one year after graduating from high school. “The study showed a ‘consistent trend characterized by self-determined youth doing better than their peers one year out of school. Members of the high self-determination group were more likely to have expressed a preference to live outside the family home, have savings or checking account and be employed for pay” (Wehmeyer & Schwartz, 1997, p.253). COMMUNICATION SKILLS. Outside the family unit, how does your child reach out to community, employment, volunteering, or post-secondary education?
SOCIAL SKILLS. Friends, classmates, extended family, community, employment. PERCEPTION AND AWARENESS OF STAMINA. What tools do you need to be successful in your personal life, school, or work? EXECUTIVE FUNCTION SKILLS. Decision making, time management, planning, task initiation, etc. In college or employment your child will not have the support or reminders to carry out these skills. What tools does your child need to do tasks independently? TRANSPORTATION SKILLS. Navigating public transportation or mode of transportation, when in the community or post-secondary education. INDEPENDENT LIVING SKILLS. Shopping, understanding a paycheck, paying bills, paying rent, how to use an ATM, etc. A transition assessment done by an objective evaluator can be used to help determine your child’s baseline and assist the IEP team in identifying and developing transition goals he or she might need to learn and develop while they are still in school. A transition assessment is a roadmap for your child’s life journey. ✷ Special Needs Guide | BostonParentsPaper.com
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T
he alarm goes off at 5:30 a.m. I stumble to the kitchen and press the button on the electric tea kettle. I stand there, gazing out the window. I have 30 to 45 minutes before anyone enters my space, before someone needs something, before questions are asked and the rituals and demands of the day begin. Some mornings I sit down on my yoga mat, breathe and practice. Other days, I curl up with the dog on the couch, savoring each sip of tea, or sit down at the computer to check email or Facebook. There is something almost magical about being awake while everyone else in the house is sleeping. This is my time to make it what I want it to be. I have three children, ages 16, 13 and 8. My 13-year old daughter, Mira, suffered a brain injury during labor and delivery that has left her unable to speak, walk or do almost anything independently. She requires all the
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By Cindy Kaplan things that any child needs and then some. She requires stretching every morning to protect her muscles from tightening, shortening and causing contractures. She needs full assistance to get dressed, get to the toilet, brush her teeth, get to the table, eat her food, help her communicate, get her into her wheelchair and guide her down the driveway to the school bus. She attends a school for children with special needs, but she also has other therapies after school, such as physical therapy, horseback riding and music therapy. I am a firm believer in allowing our kids to do as much for themselves as they can, but I will never be able to do that with Mira in the same way. We also don’t have the luxury of just calling a neighbor to babysit, as we need someone who can lift and transfer Mira, be willing to change her pull-ups and be prepared to handle a seizure.
The heavy load of all that my daughter demands plus the weight of all that we could and should be doing to support her independence and optimal development is more than we are given hours in the day and requires more bandwidth than I can mentally provide. My two other kids are in completely different worlds. Parenting the three of them often feels like parenting three different families. There are very few moments of “today we are going for a bike ride” or “taking a trip into Boston.” I sometimes envy the family that can pull into a parking spot, open the door and expect that the others will unbuckle themselves, get out of the car and walk to a destination. When you are parenting a child with special needs, the need for selfcare is even greater and is twice as challenging as for other parents. The pressures and expectations we put upon ourselves as parents are greater than any human can realistically
When you are parenting a child with special needs, the need for self-care is even greater and is twice as challenging as for other parents. The pressures and expectations we put upon ourselves as parents are greater than any human can realistically sustain.
sustain. When we neglect to care for ourselves, we are at risk of exhaustion, illness, resentment and ultimately not being the parent, spouse or person that our children, our partner or ourselves deserve. The first time I really understood the concept of self-care was when I was away at a weeklong workshop on yoga for the special child, more than 10 years ago. My yoga teacher stated very simply, “We can’t give our children what we don’t have ourselves.” Being away from home at that yoga workshop was a fabulous self-care opportunity for me. I returned home relaxed, calm, present and saw things with more gratitude. My husband, noting the difference, encouraged me to go away and practice yoga again. When I returned from this week, I saw my daughter with a different lens. I no longer saw her as a child I was responsible for shaping and making into the person she may never be, but rather a child with a completely intact soul I wanted to get to know. To view self-care and limit it to external practices that include exercise, a pedicure, going out with friends, time out with our spouse, a massage or reading a book, we are likely to build frustration and resentment when external factors get in the way. Even if a sliver of time can be found, spending money and hiring a sitter to accomplish some of these external self-care practices isn’t always easy or possible. Determined to find a way to extend that feeling, I began to look at ways to make self-care a priority at home, without needing to escape to be restored.
Outsource When Possible
Ask Kids for Help
As a parent, we sometimes struggle with the notion that no one else can do for my child the way that I do and because it is so challenging to find a good sitter, it is often easier to do it ourselves. For the first several years of my daughter’s life, I wouldn’t dare miss a therapy appointment, and there were several a week. I couldn’t imagine someone else taking her to the doctor. One afternoon, while I was with my son at the orthodontist, I realized I would never make it on time getting with my daughter to her doctor’s appointment. I had a sitter picking up my daughter from school to take her to horseback riding therapy and asked her to take my daughter to the doctor as well. When we allow a spouse, friend or sitter (money required) to take on some of the driving, stretching, feeding, play time or bed time routine, it helps if we can see it from the perspective of what the child is gaining, rather than what we are not doing. The child gains practice in flexibility, as different people work with her in different ways. My daughter cooperates with a sitter during her stretching routine much better than when I wear the hat of therapist. I believe that if I fill every need for her, I will have nothing left to give to my boys. I also recognize that what my boys see in terms of my enjoyment of parenting or adulthood is what they learn to apply and expect in their own future relationships.
Asking children for help with setting and clearing the table, prepping for dinner, putting things away, caring for pets and being responsible for their homework and things that need to go back and forth to school is another way to help lighten our load. Letting them truly take on those responsibilities is a great way for them to build confidence and feel like valuable family members. When our kids are struggling or upset, we are more likely to be able to respond to them in a way that will help versus getting annoyed that they forgot their lunch or that they are complaining about the contents of it.
Expressing Myself Creatively Think back to activities you enjoyed before having children. Did you sing while you drove? Did you dance around the house to loud music? Did you enjoy reading a good book or doing an art project? When I am involved in some form of creative expression, I feel whole. Going to a dance class or joining a singing group would be wonderful, but we can find ways to stimulate our creativity, even when we are with our kids. Rather than taking care of all the “should do” tasks, see what it is like to have a dance party with your kids. Sing out loud while driving your kids from place to place. Practice yoga while your children can see you. Another wonderful piece of wisdom from my yoga teacher is that there is always enough time to do the things we need to do if we do each of them with intention and presence. continued on page 46 >>>
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Time with Our Other Children It took me 12 years before I felt comfortable enough taking our two boys away for a weekend without Mira. There is always a delicate balance between wanting to include Mira in every family trip and wanting to experience some things with our boys that we simply can’t do in the same way if she were with us. In my head, I can justify traveling with just the boys if I know Mira has a great weekend filled with people she adores and activities that keep her happy. That is not to say that the couple of times that we ventured out without her are free from feelings of wishing she were with us and guilt that she is not. I have learned to hold those feelings together with the feelings of freedom that come with being with two typically developing children. As long as I know and accept that these getaways are made up of both feelings, I can continue to make them happen.
Breathe Taking three to five minutes to focus on breathing an have an enormous impact and is one of the easiest and quickest ways to care
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for yourself. Most of us come into the world breathing properly and deeply. Around the age of 5, we start breathing less deeply and can even breathe incorrectly. While we can’t often change the stressful situations in which we find ourselves, we can change the way we respond. The first step to changing our response is to bring awareness to our breath and alter it. Breathing exercises bring nourishment to our blood, our nervous system and our immune system. By slowing down our breath, we bring calmness to our brain and our entire being. Sit in a comfortable position and close your eyes. Allow your inhale and exhale to move through just your nose. As you inhale, either count to three or four, or say to yourself, “I am inhaling.” As you exhale, through your nose, count to four or five, or simply say to yourself, “I am exhaling.” Breath is powerful and you can practice it almost anywhere and any time of day. ✷ Cindy Kaplan is a family therapist in Newton and is a Parent Coaching Institute (PCI)-certified parent coach; cindykcoaching.com.
Self-Care Tips for Parents
n the moment, when our blood is beginning to boil, when we take on the parenting challenge of needing to fix a situation, or when our body starts to tense up in preparation of release, be it through yelling or grabbing our child in a way that is not gentle, we need to have strategies that protect both ourselves and our kids. Below are some concrete ways to take care of yourself so that you can access the bigger picture. • Remove yourself from the situation and lie down on the ground. You don’t need to respond in the moment unless there is a serious safety risk. Connecting to something bigger than us, the floor, can be grounding. • Put on some classical music. An external influence can help to bring us down from the edge. Play the music during times of the day that you can predict will be challenging. It may have a calming effect on your kids as well. • Step outside and look up at the sky. The fresh air can be soothing and looking up at the sky reminds us how big the universe is in which our current moment exists. • Practice saying the phrase, “Wow. He is having a problem, not being a problem.” So much of our reaction is based on the fact that we take what our children do personally. When we observe, we create just enough distance to grab hold of a little compassion. • Give yourself permission to table a discussion for a later time. Be sure to let your child know when you will return to the conversation. If it is coming up frequently, it is clearly important to them. • Light a candle. The sound of striking a match that creates a glow of light is just enough to break the mental chaos and redirect your mind. • Wake up 15 minutes earlier to adjust to the morning by yourself. Make yourself a cup of coffee or tea and enjoy it without distractions.
Universal Playgrounds: Where All Children Come Together
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very child has the essential and undeniable right to play, and to experience the magic and freedom that comes from an ordinary day at the park. And there is nothing children love more, regardless of their abilities and needs, than playing and socializing alongside one another at the playground! Massachusetts has always been among top-ranking states working hard to ensure and support equal participation for children with disabilities and special needs, and it’s no different when it comes to recreation. Universal playgrounds, accessible to all and designed for children with physical disabilities to experience mobility and have access to equipment and fun, multi-sensory designs is something Boston communities can and should be proud of! Here are some local, inclusive playgrounds that serve as a model for our entire nation that families of all abilities should check out.
Mayor Thomas M. Menino Park
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he city’s first universally accessible playground, steps from the Spaulding Rehabilitation Hospital in the Charlestown Navy Yard incorporates a ramped play structure, embankment slides and climbers, and a swing chair. This dramatic, waterfront space has been noted for its cleanliness, and was envisioned by Mayor Menino in the wake of the Boston Marathon bombings to afford special needs children, patients, and families the opportunity for active play as well as a place of respite for recovery and relief. In his words, “This is Boston at its best—people coming together to improve the quality of life for the residents of our city.” 98 16th Street 300 First Avenue, Charlestown
By Alyson Gregory
Barton Road Playground
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pened in 2013, this privately funded, 10,000 sq. ft. universal playground hits all the marks of inclusive play for children and is well equipped with completely accessible rubber surfacing, ADA swings, and multiple ground components. Learning boards feature Spanish to English language and the impressive site is sectioned for kids ages 2-5 and 5-12. Barton Road, Wellesley
Harambee Park
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nveiled in 2009, this bright and vibrantly colored playground was Boston’s first “Boundless Playground”, and was designed to maximize play with elevated structures such as a gazebo affording children with physical disabilities a greater perspective that was once unreachable, while at the same time encouraging independent play with peers. This site features plenty of high-backed swings and play panels along with multiple handrails, and was furnished through another of Mayor Thomas Menino’s programs. Talbot Avenue, Dorchester
Touch The Sky Playground
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pen to the public when school is not in session on afternoons and weekends, this fully accessible North Shore playground features a slide constructed out of roller balls for touch sensations along with learning boards and wide ramps with rubber surfaces. The latest addition to the school’s dedication to children with disabilities, and also open to the community when not in use, is the Douglas Marino Community Field, a rubberized, completely level field that allows children in wheelchairs or with vision impairments to play ball! The school’s executive
director, Mark Carlson, wants parents of children with disabilities to know about this community asset, and that it is available to them. Beverly School for the Deaf, 6 Echo Avenue, Beverly
Noah’s Place Playground
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ocated at Marine Park on Pope’s Island, this community-inspired and generously funded and dedicated site is the largest and most sensory-rich inclusive playground in New England. Features of this park include a toddler playground, wheelchair swing, a natural embankment slide, and a seesaw-like apparatus that children of all abilities can enjoy. 102 Popes Island, New Bedford
Buttonwood Park Playground and Zoo
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amed “one of the finest small zoos in the United States”, the Buttonwood complex is wonderfully designed for an outing. The Black Bear Express and Wildlife Carousel are both ADA certified, making them wheelchair accessible for children and just down a path lies the accessible playground with wide ramps and elevated surfaces that allow plenty of room for turning in a wheelchair. Bring some bread to feed the ducks in the idyllic pond, all located on the grounds of Buttonwood Park. 425 Hawthorn Street, New Bedford ✷
Alyson Young Gregory is a native New Yorker, and Boston-based freelance writer, mother, and Holistic Health Educator specializing in Ayurveda. She has a passion for maximizing vitality through nutrition based on environment and individual body constitution for all ages, supporting children’s wellness policies, and finding inspiring local activities for families.
BOSTON MUSEUM INCLUSION PROGRAMS Boston Children’s Museum
Morningstar Access offers families of children with special needs the wonderful opportunity to visit and experience the exhibits at a less crowded time, with less concern about infection, and a limit of only 100 guests. Read what parents had to say about this program on their website. www.bostonchildrensmuseum.org
The Museum of Science
This museum’s dedicated Accessibility Coordinator will assist families with all aspects of accessibility for children with disabilities from everything to the sensory-friendly restrooms and the quieter places and lesscrowded exhibits throughout the museum. www.accessibility@mos.org
Museum of Fine Arts
The MFA’s Beyond the Spectrum program is designed for children and teens with Autism Spectrum Disorders, and meets on select Saturdays for gallery exploration and handson art making. Classes are divided by age for 8-12-year-olds and for teens aged 13-18. www.artfulhealing@mfa.org Special Needs Guide | BostonParentsPaper.com
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By Barbara Dianis
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tudents diagnosed with dyslexia, ADD, ADHD or a learning disability may wonder whether they will be able to graduate from high school and/ or collegiate studies. I worried over the same issue myself because I was diagnosed with dyslexia in a time period when there were very few strategies to help strengthen my learning disabilities.
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Education was very important to me, and I wanted to graduate from high school and college despite my scholastic challenges. Therefore, I set out to teach myself ways to overcome my learning obstacles and graduate. Through the implementation of systematic step-by-step educational solutions, I, like my students with learning issues, began to master how to overcome learning challenges.
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Plan homework schedule and study times to begin the school year. The planned work and review times will help your child or teen to help meet the scholastic increase of the new grade level. The plan should include additional study time even if the child or teen has study halls during their school day. The times can be adjusted on a successful academic achievement basis.
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Children and teens entering a higher grade level typically need to upgrade their study skills to help them keep pace with their current curriculum. Children and teens benefit from reviewing the notes they take in each of their classes for at least five minutes a day. Reviewing the class notes taken will help children and teens retain more core learning concepts. Consistent review will also assist their ability to access the information on tests. Younger students can benefit from a few minutes of reviewing concepts such as grammar and phonetic rules.
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A parent and their child benefit from checking the student’s grades online together several times a week. Parents who check grades online with their son or daughter show them they care about education. Additionally, if there are downturns in their grades or missing assignments, then educational solutions can be applied before their difficulty becomes a scholastic issue. The extra accountability generally helps students of all grade levels stay on track throughout the school year. Students of all ages often respond positively to their parents’ praise when they see good grades.
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Tests and quizzes become an important part of the academic experience. Children and teens should add more study and preparation time to the system they used in the previous grade level. Students of all ages benefit from studying for tests and quizzes several days before they are given. Parents can help their student understand that their brains may need time to absorb and readily access the educational concepts they will be tested over. Waiting until the day before a test may not be the best option for students because of the increase in information, which is associated with each new scholastic level.
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As soon as a student begins to slide, academically educational solutions should be applied to help the child or teen overcome their academic obstacles. All too often scholastic slides are not addressed early enough because the parent may feel it is a problem that will correct itself. It is generally better to address the academic difficulty early on before the child’s or teen’s grades begin to spiral downward. One way to address scholastic slides is to help your child correct mistakes on graded assignments that have multiple mistakes on them.
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Parents can help make learning fun during homework and study time. Children and teens can make review and drill time into a game show format using flash cards. They can make these from their study material. When review time is presented in a game show format, students generally are more engaged throughout the learning process. Parents may wish to host a study review time for their child with several students in their son’s or daughter’s classes. Students of all grade levels generally enjoy the review process when it is made into a game they are playing with their friends.
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Parents can help their child or teen develop an interest in learning by asking their teen to tell them three concepts they learned in their classes each day. Asking your child or teen to report several core concepts learned in class can also help improve his or her ability to focus in class. In addition, the student typically will report the class to be more interesting and fun.
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If a child or teen is struggling in the area of math, then prelearning the mathematical formulas can really help increase the student’s understanding of new concepts. Previewing the key concepts from the upcoming lesson can help the student absorb and glean more information from the instructional teaching lesson. Students can pre-learn new math concepts by reading the following day’s lesson in their online text or textbook. Next, the student should make a notation of concepts that are not understood. The child or teen should ask the teacher for further instruction on the more difficult mathematical concepts. In addition, students benefit from reviewing key terms to increase their mathematical vocabulary to improve their understanding during the lectures. Students of all grade levels and ages who implement educational solutions to help them overcome areas of academic weakness can improve in their educational skills. Generally, children and teenagers will discover over time they are accurately able to spend less time learning new scholastic concepts as their organizational skills and study habits improve. Students may find learning to be fun as they become capable to meet scholastic challenges and overcome their learning weaknesses. Another added benefit from implementing educational solutions into their daily study time is they may have a renewed sense of academic self-esteem, dignity and a restored positive attitude toward their studies. By igniting students’ interests and understanding, improved grades can be the result of their increased scholastic skills. ✷ Barbara Dianis overcame dyslexia in her own life using self-taught strategies and techniques. She is the author of Grade Transformer for the Modern Student (LuLu Publishing Services, 2014) and has counseled parents of children with special needs for 22 years. Special Needs Guide | BostonParentsPaper.com
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How nutritional therapy and the avoidance of certain foods could help your childâ&#x20AC;&#x2122;s behavior, mood swings and more. By Malia Jacobson
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Cohen never looked back. She was so impressed with the changes to her son’s learning and behavior that she permanently changed her family’s diet and went on to earn a degree in nutritional therapy.
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odi Cohen’s second son was an energetic, happy preschooler most of the time. But the mom of two worried about his erratic behavior, shaky focus and “Jekyll and Hyde” mood swings. “I have an older son who is free from any issues with impulse control and focus, so I felt something wasn’t right,” she says. Cohen tried parenting classes without results. Then a friend mentioned changing his diet. Out of options, she took the suggestion, nixing corn, soy and dairy – so-called inflammatory foods believed to contribute to learning and behavior problems in children – from the family menu. Her “eat clean” efforts paid off . “Right away, he was a calm, sweet kid.” Cohen never looked back. She was so impressed with the changes to her son’s learning and behavior that she permanently changed her family’s diet and went on to earn a degree in nutritional therapy. This type of elimination diet (removing foods that may be problematic for a child) and intensive nutritional therapy are wildly popular with parents of children dealing with issues that range from mild problems with focusing to serious neurological disorders. According to the Journal of Developmental and Behavioral Pediatrics, at least one-third of children with autism spectrum disorder (ASD) have used complementary treatments, including dietary supplements and elimination diets.
Proponents of this type of therapy point to life-changing results. “I won’t say I can cure every child [with a neurological disorder],” says Deborah Z. Bain, M.D., a board-certified pediatrician who uses a holistic approach in treating children. But parents report that diet changes are game changers, she says. “They tell me, ‘He’s making eye contact, he’s speaking, he’s a new person.’” Christina Sakai, M.D., developmental-behavioral pediatrician and pediatric hospitalist at Floating Hospital for Children at Tuft s Medical Center, has heard of some of her patients having success, but warns that there is much more research needed to determine whether elimination diets are beneficial. “Certainly, some families report that their child’s symptoms improved dramatically when they tried certain supplements. The one I consistently hear is omega-3 fatty acids; however, it is important to note that there is also very limited high-quality research that demonstrates that this is effective for improving core and associated symptoms of autism.”
TREATMENT OR CURE?
Despite the wide use of special diets for kids with neurocognitive disorders, doctors, dieticians, researchers and parents are split on the issue. Sandra Kimmet, a mom of four, is a doubter. She wanted to
find a “miracle cure” for 7-yearold Jasper’s sensory processing disorder and 5-year-old Tabitha’s childhood apraxia of speech, a motor speech disorder. But a gluten-free, sugar-free diet didn’t yield results. She credits her children’s progress to intensive therapy rather than dietary changes. “I so wish there was a miracle diet,” she says. “I’d be all over it!” “What I tell parents is that we just don’t have enough information to support recommendations for nutritional therapy and/or food avoidance in children with autism,” Sakai says. “Families may be tempted to search the internet, and may find that certain diets are ‘based on research,’ however, it is important to recognize the limitations of these research studies. Specifically, many of them have very small sample sizes, therefore, we cannot generalize well to all children with autism. Currently the best that we can say is that for a certain subgroup of children with autism, diet elimination therapies can improve certain symptoms of autism. Not as a cure, but may reduce autistic mannerisms and increase communication. This subgroup of children generally have known or highly-suspected food intolerance and GI complaints.” Daniela Ferdico, Psy.D., a pediatric neuropsychologist who treats children with autism, continued on page 52 >>> Special Needs Guide | BostonParentsPaper.com
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“If a child has stomach pain and isn’t digesting food properly or is so picky that they’re not getting what they need, it’s going to affect cognition and behavior. If you try other therapies without also looking at nutrition, you’re not using all the tools you can use. And we owe it to these kids to use every tool we have.” —Daniela Ferdico, Psy.D., Pediatric Neuropsychologist AD/HD and other pervasive developmental diagnoses, agrees. “Parents shouldn’t think of food as a cure, but rather as one tool they can use to help their child.” Cogwheel offers psychology and therapies along with nutritional counseling, something Ferdico sees as an essential piece of the puzzle for children with neurodevelopmental disorders. She makes a distinction between treatment and cure: A cure is a one-time solution, whereas treatments are ongoing. Like speech, occupational and behavioral therapies, nutritional therapy is usually ongoing and works best when it’s just one component of a more comprehensive plan, she says. Nutritional therapy won’t cure autism, Ferdico notes. But it can form the foundation for an effective treatment plan by reducing a child’s level of gastrointestinal pain and distress, enabling him to be more receptive to other therapies. Nutritional therapy does this by stabilizing blood sugar to ward off mood swings and meltdowns that make day-to-day life difficult, and supplying the body with the protein and nutrients required for cognition, she says.
PINPOINT THE PLATE
Nutritional therapy sometimes involves an elimination diet wherein certain foods are eliminated and then gradually reintroduced to help pinpoint food sensitivities. Researchers have long theorized that foods containing gluten, soy and casein, a protein in milk, may irritate the intestines of sensitive children with autism, contributing to a “leaky gut” that leaches inflammatory proteins throughout
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the body, impacting behavior, mood and learning. A small Danish study found that inattention and hyperactivity abated for children ages 4 to 10 after 12 months on a gluten-free, casein-free diet, but the gains seemed to plateau when the same kids were tested after 24 months on the diet. Gluten and casein are potentially problematic because when sensitive individuals can’t properly digest the foods that contain these substances, a buildup of internal inflammation results. This contributes to mental fog, inattentiveness, unresponsive behavior and continued carbohydrate cravings, says Bain. “It’s a feed-forward cycle, where the child eats more and more unhealthful foods and less and less of the nutrients he needs to grow and thrive.” But aside from the Danish study, evidence on the impact of glutenfree diets is limited. Evidence on the negative impact of food dyes, a common food additive thought to be especially harmful to children with learning disorders, is more robust (artificial food dyes have been linked to behavior problems in children for decades), and new studies are currently under way. Because elimination diets can get complicated quickly, parents who want to try one should seek out the help of a nutrition expert. Parents shouldn’t simply yank nutrientdense foods such as grains and cheese from a child’s plate without consulting their pediatrician and a dietician, says registered dietician Kathleen Putnam, M.S., owner of NutritionWorks counseling service. One problem: Removing potentially problematic foods is only part of the picture; those calories need to
be replaced with something else, and that something may not be any better than the foods that were eliminated. Popular elimination diets such as Gut and Psychology Syndrome are gaining ground as a means to treat learning and neurodevelopmental disorders, but the protocol – sticking to a simple diet of mostly meat, fish, eggs, meat stock and fermented foods – can seem daunting to the average busy parent and difficult to maintain over the long term. Plus, eliminating entire food groups can introduce nutrient deficiencies, complicating an already complex situation, Putnam says. “Nutrition that’s limited can contribute to problematic development, both cognitive and behavioral. Children with AD/HD are often treated with medications that significantly lower the appetite, which is a major concern for growing children.” Though gluten-free and caseinfree diets are still under scientific study, they can be worth trying, with professional guidance, Putnam says. And removing most junky refined carbs, like bread made from highly refined flour, most crackers and cookies, is probably a safe, healthy step for most children. Replacing refined sugar with fruit-sweetened foods is another change that some parents find worthwhile, says Katie Hurley, author of The Happy Kid Handbook: How to Raise Joyful Children in a Stressful World (TarcherPerigee, 2015). Although a Korean study found no relationship between sugar intake and the development of AD/HD in children, some parents report that removing sweets
calms kids down. Whether you’re a believer in elimination diets or a skeptic, eating less junk food never hurt anyone, right?
NUTRITION ADDITION
Once you’ve removed potential problems from your child’s diet, you’re not done: Now, under the guidance of your child’s health care provider, you may need to add or supplement nutrients to replace those you’ve removed, or ones your child was missing before you started. Supplementation can benefit some kids on the autism spectrum; a 2005 study found sleep and digestion improved in autistic children taking a multivitamin supplement. Magnesium, B vitamins, zinc, omega-3 fatty acids and probiotics are often used and recommended, but parents shouldn’t supplement without consulting a nutritionist or dietician, Bain says, because taking too much of one nutrient can impact others. (For example, excess
magnesium can lead to diarrhea, which could reduce absorption of other vital nutrients.) “Nutrients don’t work in isolation,” she notes, and each child’s nutritional blueprint is unique. Another wrinkle: Children with neurological disorders often have sensitive stomachs – those with autism can be prone to gastrointestinal distress and constipation – and they can be intensely picky eaters, Hurley says. In other words, you can’t simply tell a child to eat a banana or a plate of spinach and expect it to happen. That makes solving nutritional challenges a two-stepsforward, one-step-back dance for many families, and is why vitamin supplements are sometimes needed, at least at first. Nutritional therapy for spectrum disorders doesn’t have to complicate families’ lives or promote expensive fad diets, says Ferdico. It’s simply one facet of a comprehensive, whole-child care
plan. “If a child has stomach pain and isn’t digesting food properly or is so picky that they’re not getting what they need, it’s going to affect cognition and behavior,” Ferdico says. “If you try other therapies without also looking at nutrition, you’re not using all the tools you can use. And we owe it to these kids to use every tool we have.”
WHERE TO START
A pediatrician or naturopathic physician can order a simple blood test to check for nutritional deficiencies such as low iron, zinc or magnesium. Parents who suspect food sensitivity in their child can ask a pediatric nutritionist or naturopathic physician about immunoglobulin G (IgG) food allergy testing. This blood test can identify food sensitivities to pinpoint the best dietary candidates for elimination from your child’s plate. ✷ Malia Jacobson is a freelance writer. Special Needs Guide | BostonParentsPaper.com
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hese Massachusetts organizations offer support, information and/or advocacy for individuals with special needs, their parents and their caregivers. Many of these groups also offer referrals or links to related services.
Jewish Community Centers of Greater Boston
Advocates for Autism of Massachusetts
978-897-5399; www.ldworldwide.org – This professional organization (for researchers, educators, clinicians and others) has a “parents” section on its website with current articles.
781-891-6270; www.afamaction.org – Public advocacy organization offering resources regarding autism spectrum disorder. Click “links” for support centers in your area.
Autism Coalition of Massachusetts
781-891-6270, ext. 102; www.autismcoalitionofma.com – A network of local organizations that support individuals and their families by sharing resources and working as a collective voice on policy change.
Autism Society, Massachusetts
781-237-0272; www.autism-society-massachusetts.org – The local chapter of this national organization is a “point-ofentry” for people newly diagnosed with autism or new to the area and in need of referrals and resources.
617-558-6507; www.bostonjcc.org – Offer a full array of special needs programs for children and adults.
Learning Disabilities Worldwide
Massachusetts Branch of The International Dyslexia Association
617-650-0011; www.massbranchida.org – Information and links to resources, such as recommended reading for parents and kids, as well as professional development workshops.
The Arc of Massachusetts 781-891-6270; www.arcmass.org – Statewide organization advocating on behalf of individuals with developmental disabilities and their families.
www.flutiefoundation.org – Provides family and technology grants through its programs, along with grants to nonprofit organizations that provide services to individuals with autism.
Asperger’s Autism Network of New England 617-393-3824; www.aane.org – The Asperger / Autism Network (AANE) works with individuals, families, and professionals to help people with Asperger Syndrome and similar autism spectrum profiles build meaningful, connected lives.
Federation for Children with Special Needs
Camp Jabberwocky
Doug Flutie, Jr. Foundation for Autism
617-236-7210; 800-331-0688 (in Mass.); www.fcsn.org – Advocacy, resources and information for parents and professionals.
Home Modification Loan Program
www.mass.gov/mrc/hmlp – Facilitated by the Massachusetts Rehabilitation Commission, this program helps individuals with disabilities to fund access and safety modifications to their homes. 54
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508-687-0967; www.campjabberwocky.org – From the end of June to the end of August, Camp Jabberwocky offers children and adults with a wide range of disabilities the chance to enjoy the summer in a small family-like community.
Dream Day on Cape Cod
508-896-8949; www.dreamdayoncapecod.org – Serves families that have children with life-threatening illnesses and or serious conditions by “bringing a ray of sunshine” into their lives through their family camp, Camp Nan-Ke-Rafe, located in Brewster.
Massachusetts Advocates for Children
617-357-8431; www.massadvocates.org – Free legal services for income-eligible families on educational issues for children 3-22. Advocacy for parents, including Autism Special Education Legal Support Center.
Massachusetts Commission for the Blind
617-727-5550; www.mass.gov/mcb – Provider of services that promote independence and community participation.
Massachusetts Commission for the Deaf and Hard of Hearing
617-573-1600; www.mass.gov/mcdhh – Services for deaf and hard of hearing, including interpreting, case management and technology.
Massachusetts Department of Elementary & Secondary Education
781-338-3000; www.doe.mass.edu – The State’s education website offers information on special education, standardized testing, public schools and related topics.
Massachusetts Down Syndrome Congress
781-221-0024; www.mdsc.org – Statewide parent organization holds annual conference, picnic, and workshops throughout the year. Publishes a newsletter for parents. Maintains a list of parent support groups.
Massachusetts Families Organizing for Change
508-824-6946; www.mfofc.org – Provides Family Leadership Series and works to educate the community about advocacy, services, and local, state and federal resources for individuals with disabilities. Regional chapters throughout the state.
Massachusetts Family TIES
800-905-8437; www.massfamilyties.org – Statewide information, referral, and parent-to-parent support network for families of children with special needs or chronic illness.
Massachusetts Office on Disability
617-727-7440; 800-322-2020 (in Mass.); www.mass.gov/ mod – Information and support concerning community, government and individual services for those with disabilities. Its primary mission is to ensure access.
Massachusetts Sibling Support Network
617-807-0558; www.masiblingsupport.org – Committed to supporting brothers and sisters of people with disabilities by creating welcoming communities for siblings across the lifespan.
Massachusetts Special Olympics
508-485-0986; www.specialolympicsma.org – Sports training and athletic competition in a variety of Olympictype sports for individuals with disabilities.
Parent/Professional Advocacy League (PAL)
617-542-7860; www.ppal.net – A statewide network of families, local family support groups, and professionals who advocate on behalf of children and adolescents with mental, emotional or behavioral special needs, and their families.
Parental Stress Line
800-632-8188; www.parentshelpingparents.org – This 24-hour call line is staffed by Parents Helping Parents of Massachusetts and provides a supportive ear for parents. Parents support groups are also offered by staff and volunteers.
Partners for Youth with Disabilities
617-556-4075; 617-314-2989 (TT Y); www.pyd.org -Provides adult mentors, one on one and in groups, to kids ages 6 through 22 with disabilities.
Special Needs Advocacy Network
508-655-7999; www.spanmass.org – Supports professional advocates for people with special needs, offers referrals to Massachusetts special needs advocates, and provides special education workshops and training. ✷
Wayside Youth and Family Support Network 508-879-9800; www.waysideyouth.org – Weprovide a wide variety of mental health counseling and family support services to children, young adults and families in Massachusetts. ✷
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Advanced Neurotherapy
development to improve curriculum access and functional independence for students and professionals in their school environments.
www.AdvancedNeurotherapy.com
Serving Ages 3-22
A wellness clinic specializing in neurofeedback, a safe, effective, durable method of brain training. Supported by a large body of peer reviewed published research, neurofeedback is used to correct and enhance brain functioning for a wide range of intellectual, emotional, educational, behavioral, and neurological deficits. Using our highly rigorous computerized brain mapping methods, we can pinpoint what parts of the brain need to work more efficiently. Additional services include health coaching, talk therapy, BAUD, parent coaching, and heart rate variability biofeedback.
Commonwealth Learning Center
145 Rosemary Street, Entrance J, Needham 781-444-9115
Cotting School
453 Concord Avenue Lexington 781-862-7323 www.cotting.org/
Cotting School creates an inclusive community which fosters academic achievement, skill development and social-emotional maturity. We meet the unique needs of students with a broad spectrum of learning and communication disabilities, physical challenges and complex medical conditions by providing an array of integrated services. HOPEhouse offers a 5-day boarding, educational and transitional program for young adults from ages 17-22 with physical, communication and/ or cognitive challenges to learning. Young adults benefit from intensive programming designed to teach them life, social, and vocational skills in increasingly more independent settings. Cotting Consulting provides technology-focused assessments, consultation, and professional 56
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220 Reservoir St., Suite 6, Needham • 781-444-5193 130 Sylvan St., Danvers 978-774-0094 www.commlearn.com Commonwealth Learning Center is an independent nonprofit organization which provides 1-to-1 tutoring and education evaluation services to all ages (kindergarten through adulthood), in all subject areas. We specialize in assisting those who learn differently, including individuals with dyslexia, ADHD, high-functioning autism, executive functioning challenges, etc. Schedules are flexible, and financial aid is available for those who qualify.
Community Music Center of Boston
34 Warren Ave., Boston 617-482-7494 • www.cmcb.org With over 40 years of direct service, the Music Center serves as the longest provider of music therapy in Greater Boston. Our team of board certified music therapists provides assessments and customized treatment plans tailored to meet the needs of children with special needs. Sessions address a number of goal areas including speech and language development, cognitive processing, motor coordination, academic development, building selfesteem and social skills. We at the Music Center believe that building long-term relationships with children and families is the basis for success in serving the music lives of children. Financial aid available.
Education Consulting, Advocacy & Legal Services, LLC
999 Broadway, Suite 301, Saugus 781-231-4332 www.educationandjuvenilelaw.com/
ECALS, LLC. is a private law firm that regularly works with parents and schools on a wide range of special education and regular education issues. We review IEPs and evaluations and attend disciplinary proceedings, Team meetings and BSEA Hearings. Please visit our website for further details.
The Federation for Children with Special Needs 529 Main Street, Suite 1M3, Boston • 617-236-7210 www.fcsn.org
The Federation for Children with Special Needs (FCSN) provides information, support, and assistance to families of children with disabilities, their professional partners, and their communities. We are committed to listening to and learning from families and encouraging full participation in community life by all people, especially those with disabilities.
Fletcher Tilton PC Attorneys at Law 370 Main Street, 12th floor,
Worcester • 508-459-8059 www.FletcherTilton.com Legal services for persons with special needs and their families. Whether your loved one with special needs is an adult or a child, we can help. We work as advocates for individuals with disabilities throughout their life. Special Needs Planning - Advocacy - Guardianship & Alternatives - Transition Planning & Adult Services.
League School Of Greater Boston
300 Boston Providence Turnpike Walpole • 508-850-3900 www.leagueschool.org/ For more than fifty years, League School of Greater Boston has remained committed to helping children and young adults, ages 3-22, with Autism Spectrum Disorder (ASD) by teaching them the skills they need to be as independent as they possibly can in all aspects of their lives: social, emotional, academic, behavioral, and vocational. We uphold this mission through three distinct programs designed to teach social, academic, behavior and community-life skills based on a student’s age and ability. Each program includes: content area academics (reading, math, science and social studies); full array of services (social pragmatics, communications, sensory integration, occupational therapy and behavior therapy); adapted physical education, art, music, culinary arts, daily living skills, community field trips and vocational training.
May Institute
Multiple Locations 800-778-7601 www.mayinstitute.org We are an award-winning nonprofit organization that provides educational, rehabilitative, and behavioral healthcare services to individuals with autism spectrum disorder and other developmental disabilities, brain injury and neurobehavioral disorders, and other special needs.
Melmark New England 461 River Road, Andover 978-654-4300 www.melmarkne.org
Melmark New England serves children, adolescents and adults with autism spectrum disorders, acquired brain injuries, neurological diseases and disorders, developmental and
intellectual disabilities, and severe challenging behaviors. We provide clinical, educational, residential, vocational, adult day and allied health services. Consultation services and support are available in the home, community or public school setting.
Dr. Moldover & Associates 555 Washington Street, Suite 5, Wellesley • 781-237-1735 www.drmoldover.com
Dr. Joseph Moldover and associates provide high quality neuropsychological, psychological and educational evaluations for children and adolescents presenting with learning, developmental, and emotional challenges. We emphasize a high level of responsiveness and continuity of care.
Perkins School for the Blind
175 North Beacon St., Watertown • 617-924-3434 www.perkins.org Our Space Our Place (OSOP) is a non-profit organization offering a respectful, accessible and fun environment for elementary and high school students who are legally blind to participate in team sports, the arts, community service and mentoring. We offer programs for students who live in Boston and its surrounding communities. Transportation is provided.
Speech Language Pathology Center
exemplary speech, language and feeding therapy in a supportive and nurturing environment. At Speech Language Pathology Center we conduct in-depth assessments that include clinical observations as well as standardized tools. Upon completion of testing, a diagnosis is formulated and a comprehensive report is written along with an individualized plan of care outlining the course of treatment. The therapists have advanced training in augmentative communication (iPads), feeding therapy/oral motor function, speech, language, dyslexia, social skills, voice and stuttering. Therapy is conducted using evidence-based strategies while providing carryover activities to enhance a family-centered service delivery. If you have concerns about your child’s speech or language skills, please call 781-792-2700 to schedule a FREE pediatric screening to determine if a full assessment is recommended.
The Wolf School 215 Ferris Ave., East Providence, R.I. • 401-432-9940 www.wolfschool.org The Wolf School is a K- 8 special education school that inspires students with learning differences, attention issues, and often school anxiety to discover confidence, compassion and a love for learning to reach their full potential. Our Immersion Model© enables children to discover their strengths by meeting their individual academic, social and emotional needs. ✷
Norwell • 781-792-2700 www.slpcenter.com/ The Speech Language Pathology Center is owned and operated by speech-language pathologists. We are an award-winning clinic and have been featured on CBS 60-Minutes for total communication methods. Our team is dedicated to providing Special Needs Guide | BostonParentsPaper.com
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