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Playdates with Special Needs Finding Good
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EATING CLEAN
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Four nationally recognized yearround day and residential schools in Massachusetts.
CREATING MEANINGFUL CHANGE FOR STUDENTS WITH AUTISM, BRAIN INJURY, AND OTHER NEUROBEHAVIORAL DISORDERS. May Center Schools for Autism
and Developmental Disabilities
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Helping Families for Over 40 Years!
F E D E R AT I O N F O R C H I LD R EN WI T H SP ECIAL NEEDS
Informing, Educating, Empowering Families
The Federation for Children with Special Needs is the place families turn 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. November 2018:
2018 / 2019: Save the Dates
Joining Voices | fcsn.org/mfv/joining-voices A conference for families of children and youth with special health care needs and the professionals who support them. Making a Difference | https://fcsn.org/rtsc/rtscconference An opportunity for Special Education Surrogate Parents to learn and network with one another, industry professionals, and Federation staff. Annual Appeal | fcsn.org/donate Support our work with families during our Annual Appeal.
March 2019:
Visions of Community | fcsn.org/voc A full day of learning and networking opportunities for families of children with special needs and the professionals who serve them.
May 2019: Celebrating Every Child | fcsn.org/gala Our annual gala, held at the Westin Waterfront Hotel.
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Contents Your Child’s Learning
Health & Wellness
6 8 Tips for School Success 10 Eating Clean
23 Yoga for Children with Special Needs 25 Finding Mental Health Providers 28 Why Self-Care is Vital for Parents
Tolerance & Understanding 15 19 21
When a Sibling has Special Needs 5 Tips for Playdates for Children with Special Needs Body Focused Repetitive Behaviors
Resources 31 Special Needs Support Groups and Organizations 34 Special Needs Resource Guide
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Contact Us Today! 978-475-3806 32 Osgood Street, Andover, MA 01810 www.theprofessionalcenter.org
EARLY INTERVENTION An integrated developmental service, offering evaluation and therapeutic services to children birth to three years of age who exhibit developmental delays or who are at risk for delays due to biological, medical or environmental factors.
DEVELOPMENTAL DAY SCHOOL A licensed private school that provides a comprehensive educational and therapeutic program for children ages 3 through 10 who have multiple disabilities, complex care needs and/or medical needs.
We offer a wide range of specialized services, in individual and group settings. The goal is to help children of all abilities, achieve their full potential. Whether your child is experiencing a developmental delay or has a physical, cognitive or emotional disability, PCCD has a program suited to your child’s educational, developmental and therapeutic needs.
PEDIATRIC THERAPY PROGRAM Provides a variety of therapies, individually and in small groups, for children aged 3 and over who would benefit from extended therapies. Our services include: speech therapy, occupational therapy, physical therapy, feeding/nutritional services and developmental evaluations. 2018/19 Edition | BostonParentsPaper.com
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YOUR CHILD'S LEARNING
for School Success By Barbara Dianis
S
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. Education
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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.
New England
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1
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.
Boston Higashi School
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For more than 45 years, Learning Prep School has provided a safe, supportive learning environment for students with language and learning challenges. We’re not just a school, we’re a community committed to our students’ academic growth, emotional well-being, and future independence. To learn more, join us at an upcoming Open House:
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Eating Clean How nutritional therapy and the avoidance of certain foods could help your child’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,
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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.
2018/19 Edition | BostonParentsPaper.com
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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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TOLERANCE & UNDERSTANDING
When a Sibling has Special Needs
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By Emily Rubin 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 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, 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 2018/19 Edition | BostonParentsPaper.com
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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.
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 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.
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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.
LOCAL RESOURCES • Massachusetts Sibling Support Network; masiblingsupport.org • Federation for Children with Special Needs; fcsn.org • Massachusetts Advocates for Children; massadvocates.org • Children’s Behavioral Health Institute; mass. gov/eohhs/gov/ commissions-and-initiatives/ cbhi/ • Wayside Youth & Family Support Network; waysideyouth.org • Parent/Professional Advocacy League; ppal.net • Massachusetts Department of Mental Health; mass.gov/dmh • Asperger’s Association of New England; aane.org
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.”
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. 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.
A Commitment that Lasts a Lifetime Whether your loved one with special needs is an adult or a child, we can help with: • Special Needs Planning • Transition Planning & Adult Services • Guardianship & Alternatives • Advocacy
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• 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. – Mary Alice Cookson, former associate editor
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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 2018/19 Edition | BostonParentsPaper.com
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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 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.
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 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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PLAYDATE ACTIVITIES THAT UNITE Choosing activities that encourage common interests will help foster friendships. Here are some ideas: • Build something - Legos, blocks, wooden train sets • Pick something they are both interested in and go do it • Arts and crafts • Go outside and play • Quiet stations for the quieter group - set up puzzles, coloring sheets, books, blocks • Set up a sensory bin • Pick a neutral location - museum, park, or zoo.
By Lindsey M. Muller
Y
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
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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 bodyfocused repetitive behavior (BFRB).
create distress for the person experiencing the symptoms. Because children are less aware of others’ perceptions 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
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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).
HEALTH & WELLNESS
Yogafor Children
with Special Needs
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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.”
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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.
Mental Health Care a Quality, Providers – Finding Knowledgeable Therapist
By Kimberly Baker “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.
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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; arbourhealth.com Cambridge Health Alliance – 617-665-1372, 617-665-3458; challiance.org Federation for Children with Special Needs – 617-236-7210; fcsn.org Massachusetts Department of Mental Health – 800-221-0053; mass.gov/eohhs/gov/departments/dmh McLean Hospital – 800-333-0338; mcleanhospital.org New England Center for Mental Health – 978-679-1200; nementalhealth.com Riverside Community Care – 781-320-9136; riversidecc.org
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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.
Why Self-Care is Vital for Parents
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By Cindy Kaplan
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 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
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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 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. 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 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.
Ask Kids for Help 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.
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 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 2018/19 Edition | BostonParentsPaper.com
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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
Self-Care Tips for Parents
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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. 30
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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.
• 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.
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Special Needs Support Groups and Organizations
A World of Exploring Fine Arts.
A World of Advanced Technology.
A World of Achievement.
A World of Health and Fitness. League School of Greater Boston provides students on the autism spectrum with the tools to develop the communication skills, social skills and life skills needed to succeed both now and in the future. We are a non-profit school whose students come from 50 different communities in Massachusetts and beyond. If you would like to learn more about any of our exceptional programs, contact Gayle Overbey, Admissions Coordinator at 508-850-3900, X171 or via e-mail at goverbey@leagueschool.com.
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These 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.
Federation for Children with Special Needs 617-236-7210; 800-331-0688 (in Mass.); fcsn.org – Advocacy, resources and information for parents and professionals.
Advocates for Autism of Massachusetts 781-891-6270; afamaction.org – Public advocacy organization offering resources regarding autism spectrum disorder. Click “links” for support centers in your area.
Home Modification Loan Program 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.
Autism Coalition of Massachusetts 781-891-6270, ext. 102; 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; autism-societymassachusetts.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. Doug Flutie, Jr. Foundation for Autism flutiefoundation.org – Provides family and technology grants through its programs, along with grants to nonprofit organizations that provide services to individuals with autism.
Jewish Community Centers of Greater Boston 617-558-6507; bostonjcc.org – Offer a full array of special needs programs for children and adults. Learning Disabilities Worldwide 978-897-5399; ldworldwide.org – This professional organization (for researchers, educators, clinicians and others) has a “parents” section on its website with current articles. Massachusetts Branch of The International Dyslexia Association 617-650-0011; massbranchida.org – Information and links to resources, such as recommended reading for parents and kids, as well as professional development workshops.
Special Needs Support Groups and Organizations The Arc of Massachusetts 781-891-6270; arcmass.org – Statewide organization advocating on behalf of individuals with developmental disabilities and their families. Asperger’s Autism Network of New England 617-393-3824; 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. Camp Jabberwocky 508-687-0967; 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; 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; 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; mass.gov/mcb – Provider of services that promote independence and community participation. Massachusetts Commission for the Deaf and Hard of Hearing 617-573-1600; 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; 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; 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.
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Special Needs Support Groups and Organizations Massachusetts Families Organizing for Change 508-824-6946; 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.
Parent/Professional Advocacy League (PAL) 617-542-7860; 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.
Massachusetts Family TIES 800-905-8437; massfamilyties.org – Statewide information, referral, and parent-to-parent support network for families of children with special needs or chronic illness.
Parental Stress Line 800-632-8188; 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.
Massachusetts Office on Disability 617-727-7440; 800-322-2020 (in Mass.); mass.gov/mod – Information and support concerning community, government and individual services for those with disabilities. Its primary mission is to ensure access.
Partners for Youth with Disabilities 617-556-4075; 617-314-2989 (TT Y); pyd.org -Provides adult mentors, one on one and in groups, to kids ages 6 through 22 with disabilities.
Massachusetts Sibling Support Network 617-807-0558; masiblingsupport.org – Committed to supporting brothers and sisters of people with disabilities by creating welcoming communities for siblings across the lifespan.
Special Needs Advocacy Network 508-655-7999; spanmass.org – Supports professional advocates for people with special needs, offers referrals to Massachusetts special needs advocates, and provides special education workshops and training.
Massachusetts Special Olympics 508-485-0986; specialolympicsma.org – Sports training and athletic competition in a variety of Olympic-type sports for individuals with disabilities.
Wayside Youth and Family Support Network 508-879-9800; waysideyouth.org – Weprovide a wide variety of mental health counseling and family support services to children, young adults and families in Massachusetts.
Helping children. Protecting childhood. All care is provided regardless of families’ ability to pay. For appointments: 617-722-3000
For urgent referrals: 844-8-LOVE-IS (844-856-8347)
ShrinersHospitalsforChildren.org/Boston 51 Blossom Street • Boston, MA 02114
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BURN CARE ORTHOPAEDICS CLEFT AND CRANIOFACIAL TREATMENT PLASTIC, RECONSTRUCTIVE AND LASER SURGERY SPECIALIZED WOUND CARE AND SKIN CONDITIONS
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Special Needs Resource Guide Listing Information Provided by Organizations Below
Advanced Neurotherapy 145 Rosemary Street, Entrance J Needham 781-444-9115 AdvancedNeurotherapy.com 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. Boston Higashi School 800 North Main Street, Randolph 781-961-0800 bostonhigashi.org Celebrating 30 years serving students with ASD in both day and residential programs. The Campus School at Boston College 140 Commonwealth Ave, Chestnut Hill 617-552-3460 bc.edu/campusschool For more than four decades, The Campus School at Boston College has recognized the potential in children ages 3–21 with multiple disabilities through its personalized approach to special education. Located on the beautiful campus of Boston College and housed within the Lynch School of Education, The Campus School develops age-appropriate thematic units that align with the Massachusetts General Education Curriculum Frameworks. Together with families, our teachers, therapists and nursing staff work across disciplines to create a supportive and
welcoming environment where every student can thrive and shine. Commonwealth Learning Center 220 Reservoir St., Suite 6, Needham 781-444-5193 130 Sylvan St., Danvers 978-774-0094 commlearn.com Commonwealth Learning Center is an independent nonprofit that has served the community for more than 25 years. We provide customized one-to-one instruction to students of all ages, in all subject areas. Our certified educators have special expertise in learning differences, including dyslexia, ADHD and nonverbal learning disabilities. We also provide educational assessments. Community Music Center of Boston 34 Warren Ave., Boston 617-482-7494 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 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 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 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. Franciscan Children’s 30 Warren St., Brighton 617-254-3800 FranciscanChildrens.org We provide excellence in care for children with complex medical, mental health and educational needs in a compassionate and positive environment.
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Special Needs Resource Guide Listing Information Provided by Organizations Below
Learning Prep School 1507 Washington Street, West Newton 617-965-0764 learningprep.org Learning Prep School provides an individualized language-based program to students with complex learning profiles including dyslexia, expressive/receptive language issues, autism spectrum disorder, and social communication disorder. May Institute Multiple Locations 800-778-7601 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 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
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services. Consultation services and support are available in the home, community or public school setting. Our Space Our Place The Tobin Community Center 1481 Tremont St., Roxbury 627-459-4084 ourspaceourplace.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. The Professional Center for Child Development 32 Osgood St, Andover 978-475-3806 theprofessionalcenter.org The Professional Center for Child Development is dedicated to providing children, of all abilities, with a solid foundation for life-long learning through our developmental, educational and therapeutic programs. With the support from our highly-skilled pediatric professionals, children are able to achieve their potential. Our programs include early intervention, 2x2 toddler groups, regional consultation program, 2x3
preschool, pediatric therapy program and the Developmental Day School. South Shore Conservatory Hingham, Massachusetts 781-749-7565 sscmusic.org/cat/ South Shore Conservatory’s Creative Arts Therapies programs provide avenues for self-expression, inspiration, and hope, supporting the mental, emotional, and physical health of some of our community’s more fragile members. For those who may learn differently, SSC offers music therapy and accessible yoga, and classes such as Music and Movement Group, Percussion Commotion, SSC Community Voices, Memory Café, Yoga for the Special Child®, and Adaptive Dance. The Wolf School 215 Ferris Ave., East Providence, R.I. 401-432-9940 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.