Talking to Our Special Children About Their Special Needs

Amy Corbett Storch
Toddlers & Preschoolers

I got a really interesting topic suggestion on Facebook recently from a fellow special-needs mom (fistbump) about talking to our children about their diagnosis. "When do you tell your child about themselves?"

She'd come across a number of parents of special-needs teens and pre-teens who had never actually sat down with their children and talked to them about what they'd been diagnosed with, and what it all meant for them. It prompted her to sit down with her 4-year-old and attempt to explain (in a positive, age-appropriate way) some of the whys and whats and hows of his own journey of evaluations and therapy and what she's learned about his brain and how it works.

This is a topic that makes me SO INCREDIBLY GRATEFUL for the specific programs we've used to support Noah: They've all managed to make the "special" aspects of the program to be things that are "there" and called them what they're called and didn't disguise them, while treating them like any other aspect of the day. The kids have circle time and snack time, but also floor time and speech group and sensory centers. Noah knows that he goes to occupational therapy and calls it OT. The kids might not really know what "OT" is quite yet, but by giving things the correct label, we're not in for a bait-and-switch revelation one day when Noah suddenly realizes that all those hours spent in was actually ... dun dun duuuun ... occupational therapy.

But I don't rely on this 100 percent, of course. Noah will be attending regular elementary school at the very place where he currently attends preschool, and I imagine at some point, kids will put two and two together and realize that kids who attended the preschool program attended it for a reason. So that's a conversation I plan on having with him first, before kindergarten, most likely. Kind of like a LOT of important conversations we parents need to have -- sex, drugs, smoking, etc. -- make sure you talk to them before their friends do.

Obviously, given everything I've written about Noah, you know I have no intention of keeping anything from him, and don't view ANY of the things we've gone through as "shameful" or something to hide. Yeah, he had delays. He also was -- and is, and always will be -- incredibly bright and talented and wholly unique. His brain works a little differently and sometimes it's challenging for us both, but man, let me sit down and tell you about the copious amounts of ass you've kicked, little guy.

When we've taken him to evaluations, I've explained that it's something like school, but that they just want to see what he knows and how smart he is, and then they'll help us make his regular school even better for him. He attends IEP meetings and we've never shuffled him out of the room while discussing therapy tactics with his teachers. He's never shown much interest in what we're talking about and why and I'm sure that will change someday, but for now, it's easy to understand why it's certainly not a big deal for him.

Some of his best little friends hardly talk. Others talk but stutter, or don't know much English, or use sign language (that Noah still knows and uses, way more than other former baby-sign-language devotees). He knows that some of his friends don't like to be touched and some miss school a lot and lots of kids need extra help with scissors. He might not know what the word "autism" means but he sure does know how to be kind and patient with his classmates who have it. He knows some kids use crutches or wheelchairs and some kids use special devices to talk. With the increased focus on Early Intervention in our area, the "mainstream" classrooms are now increasingly full of children who maybe wouldn't have been there at one point, thanks to aides and accommodations and early years of therapy and guidance.

I think this a wonderful thing, and should help make these talks with our children easier, because really, what's the big deal? I hope -- given the number of special-needs moms out there who are talking about this stuff and the diversity of available programs -- that a lot of the stigma around "special education" will continue to fade. We're all special and different and complicated. So let's continue to talk about it, both with each other and our children.

Have you had conversations with your children about themselves, or with their siblings? When and at what age? How did it go? Have you ever gotten caught off-guard by a question you realize should have been answered already?

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