September 18, 2019

What do you say to a parent of a disabled child?

You might see us in the park, holding hands with Danny while walking him from the swings to the slides, and think, "He sure has a weird way of walking. What’s wrong?" Or maybe his impish grin grabs your attention in the supermarket, but when you ask him his name, he places his hand on his chest and says "da."

My son is developmentally delayed, in our case of an unknown origin and unknown diagnosis. At age 6 he can now (finally) walk, but it’s a little unsteady and he’s awkward on any kind of incline or steps. Despite many years of speech therapy, he only has a few intelligible words. When he eats, he has trouble chewing, and some of the food comes out of his mouth. He has an intensive schedule of special-education classes, plus physical therapy for his large muscle groups and occupational therapy for his small motor delays. He wears glasses (when he will tolerate them on his face) to correct one eye from crossing and orthotics — special inserts in his shoes — to help correct his stance and gait.

After nearly four years of these therapies, and a lot of "homework" with his parents and babysitters, he is improving and making many small strides forward, from using two hands to hold a toy to saying "hot" when outside on a sunny day. Yet despite these gains, one of the hardest areas for us, and many other developmentally delayed children, is the social arena. Although outgoing and sweet, Danny has very few friends and is rarely asked to attend a birthday party or a playdate.

What should you say to us, or the parents of any other disabled youngster? What do you want to tell your child if they see a child with leg braces or using a walker? Or what if the child is wearing a helmet or her face looks "different?"

First of all, please don’t ignore us. We need and want to talk to parents of "typical" kids (that’s the word we prefer to use instead of "normal," which makes our kids "abnormal"). You don’t need to look the other way when you see the jerky way my son stands up and cruises around any piece of playground equipment. Just look with a smile on your face.

Secondly, please don’t ask us if he has a problem. If it’s obvious that a child is somehow different, you don’t need to bring it up. Sometimes it’s not the words, but the body language and whispers to friends or kids. And, please don’t ask us if something went wrong in the pregnancy or delivery. We don’t really want to get into details with a stranger, yet again. Just introduce yourself and comment on his delightful smile, gorgeous hair color or even his "Blue’s Clues" T-shirt.

Next, please introduce your child to my child. Even if he doesn’t say "hi" at that moment, Danny might say "hi" or try to touch your child’s arm. Your child can and should learn that everyone is a little different, some more so than others, but everyone can enjoy a happy song, warm pizza and bubbles in the wind. Have your child push mine in the swing, offer encouragement to him going down the slide or maybe just play in the sand with us.

If there’s a special-needs child like Danny who lives in your neighborhood or attends your synagogue, make a special effort to make sure that your child understands why that child is different, and should not be teased or laughed at. Best of all, invite us over and get to know the pure joy and love that shines through our sweet and fun-loving son.

With the mainstreaming of more disabled children into regular classrooms, recreational classes and camping activities, typical children will undoubtedly have more opportunities to observe, interact and befriend children of varying degrees of disabilities. Your friendly, positive example will help your child learn that all kids deserve dignity and understanding — lessons they can use for a lifetime.