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Raising Kids with Special Needs

Denise Brodey's The Elephant in the Playroom (Hudson Street Press) comes out this month. For this book, which explores raising a child with special needs, she interviewed hundreds of parents about their experiences dealing with issues ranging from autism to attention deficit disorder.

Q. What inspired you to gather all of these stories for the book?
A. In May 2003, when my son, Toby, was 4, he was diagnosed with sensory integration dysfunction and childhood depression. During the months leading up to the diagnosis, and after, I have never felt so alone. It was out of that desperate loneliness that I wrote this book. I wanted to know how other parents of not-so-normal kids made it through the day.

Q. What is sensory integration dysfunction, exactly, and what are the symptoms?
A. Toby is highly sensitive to light, sound, noise, and touch, and has problems learning or behaving appropriately when his senses are overwhelmed.

Q. How would this play out day to day?
A. When he was young, everything had to be planned -- he needed to know that he'd wear his non-itchy brown socks and jeans with the hole in the knee the next day, that we'd leave for school 10 minutes early so we'd get there while it was quiet and he could play with his favorite toy.

Q. But lots of kids like to know what's going to happen. What's different about Toby?
A. Here's an example: One morning the dog threw up on the jeans, so Toby couldn't wear them. And because of that upset, we were running late, so we didn't get to school early, and it was noisy, and someone else already had the toy. Some kids can shrug it off -- Toby had a 20-minute tantrum. In those days (Toby is now doing much better) he'd likely throw up or get hurt from banging his head. We tried to manage life to avoid these tantrums, but his need for control was taking a huge toll on our family.

Life with Cerebral Palsy
Life with Cerebral Palsy

Q. When friends want to help a special-needs parent, what do they need to know?
A. There is more you as an outsider can do for the adult than the child. We would have six people over for dinner, and Toby would be set off by all the chaos in our house, and our friends would just take over: "I'll stir the pasta, you pour Denise some wine; when the storm's over, we'll sit down." On the other hand, trying to help Toby ("Can I get you a banana?" "Here's the cup you dropped." "Can I tie your shoe?") made things worse.

Q. What do you tell parents who are worried about their child?
A. Trust your gut. People may reassure you that your child's behavior is normal when it's not. But also, give yourself a break. Just because your child doesn't turn his head when his name is called doesn't mean you have a problem. You have to see the pattern in a larger way, and that takes time. There's so much focus on early intervention, it can make you crazy. If you didn't catch the problem when your child was 2, it's not too late. It's never too late.

Q. That diagnosis was four years ago. How is Toby doing now?
A. He's a constantly morphing kid. I don't think it's over. But at 8, he's self-aware and able to strategize how to handle things that are difficult for him. We're in a really good place right now. He has worked hard -- it shows.

Q. What's the upside of raising a special-needs child?
A. Guiding Toby has given me the courage to revel in being un-average. And that's so freeing, to expand your concept of what's normal and just run with it. I have more fun now.

 

Originally published in American Baby magazine, May 2007.

All content here, including advice from doctors and other health professionals, should be considered as opinion only. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.