Resources for Families with Special Needs

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We're so excited to present the 2019 edition of Flourishing Families, San Diego and Imperial Counties' resource guide for parents of children with special needs.That's right! This year, we have also added resources for Imperial County.

This one-of-a-kind guide contains more than 1,050 resources including service providers, research institutes, specialized doctors, resource providers, camps, therapists, advocates, associations and so much more.

Visit for monthly articles, events and even more resources.

San Diego Nonprofits Making a Lasting Impact

In this season of giving, we’d like to recognize three local nonprofits dedicated to supporting San Diego’s special needs community. Read on to discover how each is making a lasting impact in the lives of others. As your family discusses different ways to give back, consider getting involved or supporting their efforts.  – sponsored content –

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As a licensed (#370603102) Resource/Foster Family Agency, Toward Maximum Independence (TMI) provides resource family placements for youth with intellectual and/or developmental disabilities (IDD), as well as respite for parents. We are looking for families who can provide a caring home. Resource families receive a financial stipend, respite, back up services, extensive training, and support. TMI also provides community living and employment services for individuals with IDD. We have provided innovative and trusted programs since 1981. Visit TMI-INC.ORG or call (800) 877-5452 to learn more.

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DOPcrowdThe Special Needs Resource Foundation of San Diego (SNRFSD) supports the special needs community of San Diego and Imperial Counties by providing extensive resources online and in Flourishing Families (an annual publication specifically for families with special needs), emailing relevant articles and events to subscribers via bi-monthly eNewsletter, and by hosting a fun annual event (the All-Inclusive Day of Play & Resource Fair), which is free and open to the public. Join SNRFSD in supporting families and children with special needs by making a financial donation to this community-centric nonprofit at    Photo by Tony Andrews

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HGH Natalie DeniseSince its inception in 1961, Home of Guiding Hands has been committed to providing quality community support, critical housing and life skills training for individuals with developmental disabilities in San Diego County. We connect individuals, like Natalie, to loving families in the community. Natalie has been living with Denise for over a year. They have a bond that will last a lifetime. Home of Guiding Hands is seeking caring people to open their homes as a foster care provider for adults with special needs. As a foster provider, you will receive a tax-free monthly stipend ranging between $1,800 and $3,600. Visit or contact Lynn Scott at 619-954-7847 to find out how to become a foster provider.

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Especially Sleepy: Better Sleep for Children with Special Needs

Many children with special needs also face significant sleep challenges, a draining double-whammy that leaves millions of parents and children exhausted. The National Association of School Psychologists reports that as many as 30 percent of children may have a sleep disorder, but rates are much higher among children with special needs.    

Recent studies published in Pediatrics link childhood snoring and sleep apnea, or “sleep disordered breathing,” (SDB) to behavioral problems and an increased need for special education. In fact, SDB is strongly associated with conditions like Down syndrome and cerebral palsy. What’s more, sleep problems can be especially devastating to children with special needs, because the resulting sleep deprivation can worsen the symptoms of their existing medical or behavioral problems, says Carole L. Marcus, M.D., director of CHOP Sleep Center.

Night Rumbles: Snoring and Sleep Apnea

Most children snore once in a while, and 10 percent snore most nights. But these nighttime noises shouldn’t be dismissed as “normal.” Researchers  believe that snoring is on the same spectrum as sleep apnea, a disorder characterized by pauses in breathing that cause brief awakenings. Left untreated, sleep apnea can contribute to behavioral problems and learning difficulties, even hyperactivity. A study by the American College of Chest Physicians found that children who snored loudly were twice as likely to have learning impairment. The potential impact is so severe that the American Academy of Pediatrics recommends that all children who snore be screened for sleep apnea, says Robert Heinle, M.D.

Other SDB warning signs include sleeping in strange positions, experiencing night terrors, bedwetting or perspiring during sleep, says Renee Turchi, M.D.

How to help:
The good news: nearly all otherwise-healthy children with sleep apnea respond well to having the tonsils removed, says Marcus. Back-sleeping can exacerbate snoring; regular snorers or those with sleep apnea should choose another position (“back to sleep” is still best for babies, though).

Beyond Snoring: Sleep and Special Needs

Rates of sleep apnea and other sleep troubles skyrocket for children with special needs. About two-thirds of children with Down syndrome have sleep apnea, says Marcus; a larger tongue, a small mid-face, and lower muscle tone make these children more prone to SDB and apnea. Children with cerebral palsy, spina bifida and other conditions associated with low muscle tone also have higher rates of sleep apnea. According to multiple studies, over half of children with Down syndrome ages 7-11 wake during the night, and nearly 40 percent wet the bed.

Children with autism can have difficulties with the circadian rhythm, the sleep-wake cycle that governs wakefulness and sleep, driving them to stay up too late, says Marcus. “Our brains regulate sleep, so if the brain is abnormal for any reason, sleep is going to be impacted, too.”

How to help:
Though some special-needs sleep problems are physiological in nature, such as those related to low muscle tone, many are behavioral, such as habitual night wakings, waking too early in the morning, or fighting bedtime.

“Often, parents may not set the same bedtime limits for children with special needs that they set for other children,” says Marcus. Defining clear parameters for sleep—including when bedtime occurs, where a child sleeps, and what is an acceptable hour to wake in the morning—and gently yet firmly enforcing these household rules, night after night, can help get sleep on track for children with special needs.

Medications that Impact Sleep

Some medicines can negatively impact sleep for children with special needs. Talk to your pediatrician if your child experiences sleep problems and takes any of these medicines (do not discontinue a medicine or change dosage without discussing it with your child’s primary-care physician).

• Stimulant medication often used to treat ADD/ADHD (methylphenidate, dextroamphetamine, methamphetamine)

• Corticosteroids (Prednisone and other steroids)

• Some cold and allergy medication (ephedrine, pseudoephedrine, Benadryl, Nyquil)

• Thyroid medication (levothyroxine)

• Anti-depressants: sertraline (Zoloft), paroxetine (Paxil) and escitalopram (Lexapro)

• Some anti-convulsants (medicine used to treat seizures)

• Diuretics

Source: Renee Turchi, M.D., board-certified pediatrician with St. Christopher’s Hospital for Children in Philadelphia.

Malia Jacobson is a nationally published health journalist and author of “Sleep Tight, Every Night: Helping Toddlers and Preschoolers Sleep Well Without Tears, Tricks, or Tirades.”

Originally published: March 2014

How to Support Siblings of Children With Special Needs

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Gionna Paulin, 14, is like many teen girls—she likes volleyball, track and field, pop star Nick Jonas and walking her dog, Rocco. However, unlike her peers, she also knows what it means to be “the other one.” Her 4-year-old brother, Joey, has a rare and terminal mitochondrial disease, which has left him unable to walk, talk, sit, stand or swallow. Much of Gionna’s parents’ time is spent caring for Joey, and she says she sometimes feels forgotten.

According to the Sibling Support Project (, there are more than 6 million Americans with special physical, developmental or mental health concerns. Most of them have typically developing siblings. The organization works to boost peer support and information for brothers and sisters of those with special needs, and to increase awareness of sibling issues.

Don Meyer, director of Sibling Support, says, “These brothers and sisters will be in the lives of family members with special needs longer than almost anyone. If they are provided with support and information, they can help their siblings live dignified lives from childhood to their senior years.”

Learning to Speak Up
Gionna’s mom, Roseanna Paulin, says, “I have missed school functions, play dates and just one-on-one time with Gionna because of the constant care Joey requires.”

She says that lack of time has sometimes caused Gionna to become frustrated and say things like, “In this family you have to be sick to get attention.”

Debbie Howard, R.N., and coordinator of Children’s Hospital’s hematology and oncology clinic, says those feelings are normal. “We encourage siblings of kids [in our unit] to just tell their parents that they need more time from them,” she says. “It’s ok to say you need special time. We want to prevent the kids from acting out by making sure they can express openly when they feel left out.”

Gionna, who dresses and feeds Joey, and prepares his medications every morning, says she has learned to speak up more often. “I just keep telling my parents what I need. I tell them when I need a break, and they will let me go to a friend’s house or go have time to myself.”

Meyer says the bottom line is, “Siblings have a right to their own life and a right to who they are.”

Balancing Act
What can parents do to keep these lines of communication open, to prevent their healthy child from becoming frustrated and shutting the family out?

Howard says balancing the needs of both children is important. “If you put too much attention on the child with extra needs, the healthy child will become resentful, even to the point of having physical symptoms that mimic those of the special needs child.”

Roseanna says one of the best things to do is to listen. “It sounds simple but when you have feedings, meds, going to the doctor for illnesses, it’s easy to let the healthy child get lost in the shuffle. They may be self-sufficient, but they still need attention.”

She says she tries to spend time with Gionna on the weekends, when dad Larry or Roseanna’s parents can care for Joey. “We might get our nails done or we just go for a walk. When I have time with her, I try to make the most of it.”

Howard offers some other tips. “Set aside time each day or at least each week for the healthy child. Even 10 minutes a day will work; it’s not so much about quantity as quality.

“Many of the kids we see say, ‘I wish Mommy or Daddy would color a picture with me.’ It’s the simple things you forget when you’re so into caring for a special needs child.”

Sibling Support’s Meyer says parents need to educate themselves about siblings’ issues. “Brothers and sisters share many of the concerns that parents of children with special needs experience, including isolation, a need for information, guilt, concerns about the future and care-giving demands,” he says.

“Brothers and sisters also face issues that are uniquely theirs, including resentment, peer issues, embarrassment, and pressure to achieve.”

“That’s My Brother”
Like Meyer mentioned, siblings of those with special needs can sometimes feel resentment or embarrassment about their situation. Relationships with schoolmates can sometimes be difficult, and many teens vacillate from being uncomfortable to being protective when their siblings are around.

“I get embarrassed sometimes when kids at school say, ‘Who’s the kid in the wheelchair?’ ” Gionna says. “I just say, ‘That’s my brother.’ ”

However, she says most of the time her friends are supportive, coming over for big birthday bashes, pumpkin-carving parties and Christmas caroling gatherings that Roseanna plans as a way to make Gionna feel special.

But it’s not always easy. “Sometimes it bothers me when friends come over and they go play with Joey, because they’re supposed to be here to see me,” Gionna says. “But I never say anything to them because I’d feel guilty.”

Meyer says it’s a good idea for siblings to meet other children on a similar path so they don’t feel so isolated. “Our ‘Sibshops’ bring brothers and sisters together in a recreational context and gets them talking about their siblings and their feelings so they know they are not alone.”

Keeping It in Perspective
For Gionna, the hardest part is that Joey is not a “normal” kid she can play with, she says. Many of her friends have brothers Joey’s age who are now in school, and that makes it especially tough, her mom says.

“We just remind her that Joey was put here for a reason and we just have to consider ourselves blessed that God chose us to care for him,” Roseanna says.

Gionna adds, “I have a new perspective on people and how to focus on the person. I appreciate my family more and take things for granted less.”

That makes it much easier to enjoy whatever time she has left with her little brother.

How to Talk So Your Kids Will Listen and Listen So Your Kids Will Talk, by Adele Faber.
Living with a Brother or Sister with Special Needs, by Donald Meyer and Patricia Vadasy.
Being the Other One: Growing Up with a Brother or Sister Who has Special Needs, by Kate Strohm.

Sound Check Mama
Tiffani Hill-Patterson blogs about her family’s experience with deafness and cochlear implants at

Give Them the Attention They Need
–    Spend a few minutes each day checking in.
–    Make birthdays and holidays extra special.
–    Listen to your child’s frustrations.
–    Give them a break from caregiving.
–    Help them find peers in a similar situation.

Tiffani Hill-Patterson
writes about parenting, health and fitness.

Published: August 2010

Challenges and Benefits of Having a Sibling with Special Needs

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Having a sibling with special needs is a unique experience that provides both challenges and benefits. The feelings that arise in children are often complicated. The love, appreciation and compassion they feel towards their sibling can be mixed up with worry, resentment, fear, frustration and anger. Parents who are in tune to their children’s feelings can help them work through negative emotions and turn them into positives.

1. Challenge: Insensitivity and meanness of others
Unfortunately, kids with special needs are often targets of teasing. Kids (and adults) who don’t understand people’s differences may make insensitive comments, ask inappropriate questions, or make fun of someone who is different. Typical siblings of kids with special needs may feel the need to stand up for their sibling, explain their situation to others, or may be the brunt of teasing themselves. “One of the biggest challenges in growing up with my sister was watching people laugh at her,” says Justin Lyons, whose sister Kara has Cerebral Palsy. Parents can help by equipping kids with appropriate responses and teaching them to identify and report bullying.

Benefit: Development of dependability, loyalty and compassion
Siblings of kids with special needs naturally develop compassion and a strong sense of loyalty to those they care about. Even though Kara being teased was hard for Justin, he says it made him less likely to laugh at or tease other people. Kids who grow up in a home with a special needs sibling typically become dependable, compassionate and loyal adults.

2. Challenge: Frustration
Parents may try to treat children fairly and spend equal amounts of time with each child, but when a child has developmental delays or significant medical needs, maintaining balance is extremely difficult. Frustration (or even jealousy) can develop. Kids may feel they get less attention and that their parents spend more time caring for the sibling. When these feelings develop, it is common for kids to feel guilty that they even have the thoughts, causing them to be more upset and resentful.

As a parent, try to be understanding and patient about your child’s feelings. Talking it through, listening, and taking your child seriously will help him feel loved and included. If possible and appropriate, encourage your child to join you in caring for the sibling, but don’t push the issue.

Benefit: Self control and thoughtfulness
Remember that sibling rivalry and feelings of jealousy are normal in any sibling relationship. As your child gets older, help him learn patience and self-control. He will likely learn to put other’s needs before his own.

3. Challenge: Worry and fear
When kids have a sibling with serious medical challenges, lowered immunity or other special needs, kids may feel worried or afraid about their sibling’s health. They may not be able to express feelings the way an adult can. Kids may act out, become overly emotional or appear aloof. Parents can help by being honest about health concerns in an age appropriate way. Including children in discussions reassures them and reduces fear of the unknown.

Benefit: Compassion and empathy for others
Kids who are exposed to someone with medical and developmental challenges naturally become more compassionate and empathetic to those who have struggles. “I attribute my sense of understanding and compassion to growing up with my sister,” says Michelle Hupp, whose sister is an adult with Down syndrome.

4. Challenge: Complicated and mixed feelings
Each person is different and kids will have a variety of feelings related to their sibling with special needs. Some kids may feel pressure to live up to parents’ expectations because the sibling may never reach certain milestones. Kids may feel resentment, anger or frustration that they miss out on activities because their sibling’s care puts restrictions on the family.

“Siblings often feel guilty about negative feelings such as jealousy,” says Hupp. “The rewards outweigh the negatives, but sometimes the negatives are hard to talk about.” Parents may not know exactly what their child is feeling or how to address the topic. If you suspect your child is struggling or feelings are difficult to overcome, consider seeking professional help. Support your child’s healthy development and encourage an appropriate relationship between your kids.

Benefit: A variety of positive characteristics develop
While all of these challenges are realistic, kids with siblings who have special needs typically also develop a variety of wonderful characteristics such as kindness, patience, empathy, compassion, acceptance of differences and helpfulness.

As a parent, it helps to think of the long-term benefits and help children shape challenges into successes.


Sarah Lyons is a freelance writer and mom of six kids.


Find more articles and resources for families with special needs at -- the website for the Special Needs Resource Foundation of San Diego.

5 Things to Know About Parents of Children with Special Needs

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My husband and I adopted our daughter when she was nine years old. She has a long list of mental health diagnoses. We quickly discovered that parenting a child with special needs results in the whole family having a special set of needs. As I’ve interacted with other parents of children with special needs, I’ve noticed that there are some factors that most of us have in common. These characteristics are typically present regardless of the child’s diagnosis.

We’re tired.
Really, really tired. Exhausted, actually. This isn’t an occasional thing for us. We don’t miss out on a full night of sleep once in a while. It’s all of the time. My daughter suffers with insomnia and nocturnal panic attacks. It is not uncommon for her to be awake for most of the night. Even when we do get enough sleep, we’re still run down from all the energy it takes to manage our child’s condition. Our schedules are jam packed with various doctor, therapy and psychiatric appointments, IEP meetings and trips to the pharmacy. On top of it all, we still have to go to work and keep up with general household duties.

Our brains are constantly busy. We’re always considering possible triggers in every situation, wondering how to explain our child’s unique needs to others and worrying about the future. My daughter suffers from post-traumatic stress disorder and seemingly innocent encounters can send her into a meltdown. I spend hours analyzing every one, looking for the trigger and making plans to help her process it and get through it better next time.

We know more about our child’s condition than most doctors.
My daughter is diagnosed with reactive attachment disorder. I’ve read piles of books on the subject and keep up with the latest research online. Her pediatrician has never heard of the disorder. Mental health professionals in our area have very limited knowledge of it. I had to become the expert.

We’re lonely.
Our friends and family often step away because our child’s needs make them uncomfortable. Or, perhaps we had to step away because they refused to respect our boundaries and parenting decisions. Most children with special needs don’t respond well to traditional parenting methods. Our brains may explode if we hear “all your child needs is more discipline” one more time. Discipline isn’t the issue; our child’s condition is. My husband’s mother even cut off contact because she found our situation to be too stressful.

We’re fragile.
We feel judged all the time. We want what’s best for our child like any other parent and we worry if we’re doing enough for them. We rarely have enough time or energy to take care of ourselves.

So what can you do to help parents of children with special needs? Understand that we’re overwhelmed. Bring us coffee and a muffin “just because.” Tell us we’re doing a great job. Be gentle and kind with us. We’re doing the best we can.

Rachael Moshman is a mother, freelance writer, educator and family advocate.

Published: March 2014

Understanding Dyslexia

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What Is Dyslexia?
Some authorities believe that it is strictly a language-processing problem involving the distinguishing of sounds of letters. Others believe that it is a visual/perceptual problem, since these children also reverse words laterally (b/d) and vertically (m/w) as well as scrambling letters (the=het) when they read and write.

Does My Child Have Dyslexia?
You can suspect dyslexia in your child when the following auditory and visual processing symptoms occur, and your child is about two years behind in reading (a child does not need to display all the symptoms to be diagnosed as having dyslexia):

Auditory Processing
1.    Difficulty learning the names of alphabet letters when in kindergarten
2.    Spelling has no phonetic pattern to it (Tuesday=Tunday)
3.    Sounds out all words, including sight words (many, could, these)
4.    Poor memory of words just read in a previous sentence
5.    Sounds out the letters in a word, but can’t put it into a whole (b-a-t)
6.    Memorizes stories but can’t remember same words in another story

Visual Processing
1.    Visually reverses whole words (on=no, was=saw)
2.    Regularly reads big for dig
3.    Very slow, labored reading (often takes a deep breath)
4.    Reading a year and a half or more below grade level
5.    Says words when he reads
6.    Reads a word from the line above and adds to present line, often

What Is the Difference Between Dyslexia and Dysgraphia?
Simply put, dyslexia involves much difficulty reading and spelling. Dysgraphia involves much difficulty writing.
Many children/teenagers with dyslexia often have an accompanying dysgraphia. Kids with dyslexia almost always also have dysgraphia. However, many kids who do not have dyslexia, and in fact, may read way above grade level, have just the dysgraphia.

How Can I Work With My Child at Home?
Brain integration therapy exercises and once-a week “re-trainings,” which use physical movements to “re-connect” the two hemispheres, is the first step followed by the Right Brain Reading Program, which is an Orton Gillingham-based phonics and spelling method. This tool can be purchased or can be easily made at home by the parent. I regularly can get a dyslexic 10-year-old who is a non-reader (can’t even spell his last name) reading eight sight words (e.g., many, they, city, what) and spelling them from memory in just a half-hour, using his strong photographic memory. The child’s eyes light up, because he suddenly feels so smart … and it didn’t feel like work at all.

To learn about the step-by-step teaching method that I used in my special education class, download my Free Daily Lesson Plan for a Struggling Reader from
This method works with first-graders to eighth-graders who have dyslexia. Go wild and invest in some colored markers and pictures, and have fun teaching your child how to use his/her powerful right brain to make the learning process easier.

Dianne Craft, MA, CNHP
Copyright 2012, used with permission courtesy of The Old Schoolhouse Magazine .

Self-Care Tips for Parents of Children with Special Needs

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Self-Care Tips for Parents of Children with Special Needs

Parenting a child with special needs can wear a parent to the bone. I know; I parent several kiddos with special needs. As a mom I’ve found it necessary to give myself room to breathe, space to center, replenish and pull myself together. I can’t be of much use to or support for my kids when I am running on or close to empty. Below are some of the practices I subscribe to and suggest you consider as a parent of a child with special needs. Remember, you have special needs, too.

Educate yourself about your child's special needs. Knowledge provides understanding. I found that the more I learned about my child's special needs the more confident I felt about how to help her cope, handle situations and advocate for her. I was a more effective caregiver.

Consider therapy for yourself. You need to be as healthy as you can for your child. You can feel a whole range of emotions: anger, fear and uncertainty among them. Your emotions are normal.

Get support. Develop or join a network of parents who have children with special needs. Ask your child's occupational therapist or physician for ideas or contacts. Many parents of children with special needs share that they feel isolated.

Ask for help. Tell your partner and friends how you feel. You are the primary caregiver, and parenting a child with special needs is emotionally and physically taxing. Others probably don't have any idea how you are feeling. Tell them how they can help, like offering a listening ear, or watching your child so that you have time to replenish yourself.

Cry. Stress hormones, found in tears, negatively affect every system and organ in the human body. Crying provides health by eliminating harmful stress hormones. Haven't you found that you feel relief after a good cry?

Give yourself personal time in the form of a walk, writing in a journal, or some other activity you enjoy. Do this every day.

Take care of you. Make sure you are eating food that is healthy, drinking plenty of water, exercising and getting plenty of sleep.

Judy M. Miller works with pre- and adoptive parents, encouraging and empowering adoptive families through difficult times. She is the author of the international selling What To Expect From Your Adopted Tween.

Keep Your Relationship Strong While Parenting A Child With Special Needs

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So, the kids are all right but how’s your marriage doing?

“I’ve had parents of kids with autism in my practice assume their marriage will fail,” says Laura Marshak, a registered psychologist and author of “Married with Special Needs Children.” Here, Marshak explores marriage myths and strategies for success when your kids have special needs.  
What are the rates of marriage failure when a child has special needs?
There’s an urban legend that 80 percent of marriages break down when they have a child on the autism spectrum. There is great agreement that this just isn’t true. Research findings (about parents of kids with various disabilities) are contradictory. Some studies show a slightly elevated rate of divorce—especially in the first two years after a child’s birth. But some studies show a lower than average divorce rate.

Should we pay attention to divorce stats anyhow?
I don’t think they reflect what really goes on in a marriage. Some couples stay married because they don’t want to solo parent or because of financial insecurity. You could have a marriage that is deadened.

Is the marriage at risk when a child has special needs?
It introduces vulnerability and extra marriage stressors. If you don’t protect your marriage (or long-term relationship) you become “parent partners.” This threatens the marriage. You can do a good job for your child but you don’t necessarily do a good job nurturing and protecting your couple relationship.

What are the major stresses on the marriage?
Lack of time and financial pressures are issues. Then there are social stresses such as extended family not “getting” the disorder. Often one partner (usually the mother) has to give up her job. It can be stressful relinquishing that role of working outside the home.

What strategies keep a couple’s relationship strong?
• Be a team. Don’t have one expert parent.
• Make sure your roles and parenting responsibilities feel fair. That way you’ll avoid stockpiling resentments.
• Embrace your parenting differences. Take time to listen and actively reflect back your partner’s views.
• Save 20 or 30 minutes every day to connect with your partner.
• Ground rules during that connecting time: Turn off the TV. Don’t talk about your kids. Minimize complaining about your day. Really listen to each other.
• Don’t expect your partner to be perfect.

What do you think about couples dating and taking trips together?
I’m a big fan of that. Some couples say they can’t go out. Could it be they’ve forgotten how to be a couple? You need to relearn this. Schedule in a weekly date. Nurture the part of your relationship that’s outside of parenting.

What if your child’s needs are so involved that you can’t leave them?
I know a few couples who really can’t leave their kids. Instead they plan and schedule in-home dates. With creativity, there’s no reason you can’t date your partner.

What are the characteristics of couples that thrive?
They have prioritized and protected the marriage. They don’t assume that they have to put 100 percent of themselves into their children. (I don’t think kids thrive when we put everything into them.) Both partners see each other as more than just parents. They take time to connect each day. They regularly have dates and vacations without the children—without guilt.

Any final advice for couples with special needs kids?
They need to remember: I’m as important as my child. So is my partner and my marriage. We’re all important to this family. Taking time to be a couple is a healthy thing to do.

Amy Baskin, M.Ed. writes about parenting. She gives workshops about special needs parenting based on her co-authored book “More Than a Mom—Living a Full and Balanced Life When Your Child Has Special Needs.” 

Published: March 2013

Asperger Syndrome, Redefined

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Keagan Peterson’s first birthday party was a happy occasion—cake, balloons and gifts—but his mom, Stephenie, couldn’t shake the feeling that something was wrong. Keagan, now 6, seemed to be suffering from a major sensory overload.

“He didn’t want to touch the frosting on his birthday cake. He was greatly upset by the feeling of the grass on his feet. And I noticed that he wouldn’t sustain eye contact,” she recalls.

By age 2, he’d been diagnosed with Sensory Processing Disorder (SPD). But the diagnosis didn’t explain all of Keagan’s quirks: his habit of repeating words and phrases, his obsession with patterns or his penchant for gigantic violent meltdowns.

He was officially diagnosed with autism at 3, but his symptoms, such as the inability to read social cues, avoidance of eye contact, high intelligence and advanced vocabulary, were more consistent with Asperger syndrome, one of numerous developmental disorders on the autism spectrum. Earlier this year, his 4-year-old sister Eden received the same diagnosis: high-functioning autism or Asperger syndrome.

Two kids with three labels between them—SPD, autism and Asperger’s—made life complex, and insurance paperwork was a nightmare. It’s a familiar scenario for families with a child (or two) on the spectrum: Because many spectrum disorders have overlapping symptoms, arriving at an accurate diagnosis and getting needed treatments can be a murky medical maze.

A New Label
It may be getting a little clearer. At least, that’s the hope of the American Psychiatric Association, who earlier this year removed the diagnosis of Asperger syndrome from the Diagnostic and Statistical Manual of Mental Disorders (DSM). Under the new definition, Asperger’s is recognized as a form of high-functioning autism and is grouped under the autism umbrella, along with other familiar spectrum disorders like pervasive developmental disorder and childhood disintegrative disorder. The change could make it easier for those on the spectrum to get needed treatments, since certain states provide services for autism but not for related spectrum disorders like Asperger’s.

The DSM is the diagnostic bible used by mental health professionals, education providers, and insurance companies. Its language channels the flow of treatment resources, helping schools determine how to allocate special education funding and informing insurance companies’ decisions about coverage. Changes to its verbiage are a big deal, and not without controversy. This one sparked angry protest and impassioned petitions from Global and Regional Asperger Syndrome Partnership and the Asperger’s Association of New England.

New research is stirring up more controversy by making the case that Asperger’s is, in fact, a distinct disorder. According to a study published in BMC Medicine, children with Asperger’s have different electroencephalography (EEG) patterns (or brain waves) than children with autism–showing that Asperger’s is not merely a mild form of autism, but an entirely separate condition with unique neurological implications.

Many health professionals acknowledge that Asperger syndrome has unique characteristics that differentiate it from autism: Individuals with Asperger’s don’t have the language deficit often seen in those with autism, are not intellectually impaired, and can have tremendous focus. These uniquely “Aspie” (a friendly nickname for those with Asperger’s) characteristics will continue to shape treatments and therapies for those with Asperger’s, even under its new “autism” label.

Regardless of how the disorder is labeled, early intervention is key to successful treatment.

“While the brain remains plastic throughout life and new things can always be learned, the greatest plasticity is during the younger years,” says Stephen Shore, Ed.D., author of “Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome.” So interventions like occupational therapy, speech therapy, and specialized social skills groups may have the greatest impact—and the best chance of positively shaping a child’s future—if they’re initiated during early childhood.

Sneaky Symptoms
Asperger syndrome can be tricky to spot, particularly in toddlerhood, because it doesn’t cause speech delays. But symptoms often appear before age 3, and parents can pick up on the signs if they know what to watch for, says Gary A. Stobbe, M.D.

Many times, children with Asperger’s begin speaking early, like Keagan, who knew hundreds of words before his first birthday. Children with Asperger’s can have large vocabularies, but may speak in a monotone or with an odd inflection. They may be unable to match their vocal tones to their surroundings—they might not use a quiet voice at the library or at the movies, for example. They may lack physical coordination; movements may seem either stiff and stilted or overly bouncy, according to the National Institute of Neurological Disorders and Stroke.

Individuals with Asperger’s or high-functioning autism can struggle with “executive functioning,” or the ability to plan and organize, says Stobbe. Bigger challenges come during the school years, when children are expected to work on projects over several days and turn in homework.

Diagnosis Drama
Ultimately, the precise name of the disorder may not matter much; a parent’s job remains the same, notes Stobbe. “Don’t let the diagnosis dominate your planning and parenting. Your goal as a parent is to provide an environment to help your child be happy and succeed.”

Life in a home full of Aspies has not been easy, says Stephenie. But it’s wonderful. “My kids are so smart, so funny, so amazing. And it isn’t like they are great kids in spite of Asperger’s. A lot of the amazing things about them are in part because of their Asperger’s.”

Malia Jacobson is a nationally published journalist and mom of three.

Published: February 2014

Surfing Madonna Surf Camp for Kids with Special Needs

teacher with surfing student

Surfing Madonna Oceans Project, a non-profit dedicated to protecting our ocean and coastlines, opens registration this month for their annual Surfing Madonna Surf Camp for kids with special needs.
Located at Moonlight Beach in Encinitas, camp sessions are scheduled twice per month, May through September. Campers, ages 3-17, work one-on-one with a professional instructor and two volunteers during each two-hour surf lesson. No swimming or surfing experience is required, and surfboards, wetsuits, water and snacks are provided. There is no cost to participate.

“There hasn’t been a surf camp yet where we haven’t seen a complete transformation of the majority of the children,” says camp co-director Megan McCarthy. “Since our first year, we’ve seen over 100 children go from feeling terrified or anxious to complete happiness and pure joy within 30-40 minutes. You can see their confidence building and a sense of independence growing right before your eyes. It’s incredible.”

The organization’s president, camp founder and co-director, Bob Nichols, has been surfing since he was a small child. “Being in the ocean can relieve stress and bring about a sense of health and happiness,” says Nichols. “It’s a healing resource and best of all, it doesn’t cost anything.” With an awareness of how surfing has positively impacted his own life, Nichols created the program to share his passion for the ocean with children with special needs.

Surfing Madonna has two floating beach wheelchairs available to campers, if needed. A plastic mobility sidewalk used for wheelchair access through the sand is also an option.

“We feel surfing gives children the opportunity to explore the ocean as a therapeutic medium for social interaction, creating friendships, gaining a sense of independence, building confidence, strengthening muscles, providing sensory input, motor planning, and developing lifelong skills,” McCarthy explains.

Surfing Madonna hires the Surfin’ Fire Surf School to bring surf equipment and provide instructors. McCarthy describes the Surfin’ Fire staff as patient and fun, helping the kids feel comfortable and enter the water only when ready. The camp experience enriches the lives of not only the kids, but of the dedicated surf instructors, volunteers, onlookers and involved families.

“The kids just love it,” McCarthy says. “It’s hard to get a lot of them out of the water as they want to catch ‘just one more wave.’ We’ve heard children ask if they can take the surfboard home!” While the surfboards stay behind, the kids do take home a personalized surfing diploma, finisher’s medal and sponsor goodies – along with a newfound love for surfing. Many campers continue to enjoy ocean activities throughout the year.

First-time participants are given priority registration and returning surfers are placed first on a waitlist, if necessary. Because of the advance registration process, spots are expected to open throughout the summer due to cancellations. Last summer, all waitlisted campers were able to participate. Future plans involve also offering a similar surf camp to adults with special needs.

Surfing Madonna Surf Camp is primarily funded through the annual Surfing Madonna 5K/10K/15K Beach Run, the largest low-tide beach run in the country, held every October at Moonlight Beach. Don’t miss the opportunity for kids ages 12 and under to participate in a shortened 1K version of the run. If Encinitas isn’t a convenient location, register for the “virtual” option and walk or run in your own neighborhood (you’ll still receive a t-shirt). This is a great way to get out-of-town friends and family involved!

Participating in the run, spreading the word about the program, volunteering for camp or donating to the organization are all great ways to help introduce kids with special needs to a life-long love of the ocean. Learn more about Surfing Madonna Oceans Project and surf camp at Register for the beach run at Enter coupon code SDFM30 at check out for a 30 percent discount on race registration.

Encinitas resident Lisa Pawlak is a contributing writer and mom of two sons.

Discover more camps and enrichment programs for kids with special needs in our Flourishing Families resource listing.

Published April 2016

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