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Talking to Your Child About Their Special Needs

By Amalah

Hi Amy,

I am probably way jumping the gun here, because my son is three. And also clueless. And also Autistic.

He goes to a Special Ed preschool and has speech therapy and OT and has Behavior Services come to the house a couple times a week. It’s all normal for him. He doesn’t know, doesn’t care that other kids don’t do the same thing.

So when do you tell him? That, you know, he’s a little bit different? That he sees the world differently than most people? That most people look at other people when they talk to them, and yes, I know it’s hard for you, kiddo, but that’s how the rest of the world works and you might have to work a little bit harder at it. That most people actually HAVE facial expressions, and that you don’t, and it’s hard for people to figure you out, little man. You’re kind of an enigma.

I know you’ve touched on this with Noah, and how kids in his kindergarten class had no issues with the kids who were dismissed for their Special Ed classroom. Is it still the same in first grade?

I fully expect my son to be mainstreamed when he reaches kindergarten, probably still with speech therapy for communication skills. But at what point is it beneficial for him to know WHY he’s doing ST? And WHY he sees the world differently?

Thanks for the insight!
Planning Ahead Mom of Autistic Kid

Well, this timely. Yesterday afternoon — while in the waiting room of my son’s private occupational therapist’s office — I had a long conversation with another mother and we touched on this issue. Our children are close in age (first grade and second grade) and have basically followed the exact same path/trajectory: early intervention, disastrous attempts at mainstream preschool, two years of our district’s preschool, then to the LAD (Learning & Academic Disabilities) program. They are still split up between general education and LAD, and still receive extra services privately to supplement their IEPs.

And she half-admitted, half-marveled that her son has never, ever asked any questions: why they come here, what is OT, why do I leave my homeroom, etc. It’s just a fact of life for him. Something he does, and something he’s completely comfortable with. Or at least comfortable enough to not question or particularly care about.

Same here, I said. Mostly, anyway.

A few weeks ago one of Noah’s neighborhood playmates rang our doorbell just as we were getting ready to head off to his OT appointment. Noah promptly informed him that he couldn’t play just then, because we had to go see “Ms. M___.”

“Who’s Ms. M___?” his friend asked.

Noah paused. He’s known her since he was three-and-a-half years old. But…who is she to him, exactly?

“She’s my grown-up friend,” he answered. “We play together.”

“Oh. Okay!” came the satisfied response. “Can Ezra play then?”

(Interestingly enough, “grown-up friend” is how I’ve heard Noah describe other people, like our babysitter or close family friends.)

When we started seeing a psychologist this summer, I asked her how I should explain the visits to Noah. She said to tell him that she was a friend of ours who was very, very good at talking to kids about their feelings. They would play together and she was a really good person to talk to about his feelings, if he wanted to. She felt that was usually enough. (Sometimes even more than enough, because the truth is little kids are often kind of used to not having every destination or person in their life fully explained to them.)

Personally, I try to avoid overwhelming Noah with information that he doesn’t ask for. It’s not that I’m hiding anything, but it’s more because that’s just how Noah operates and processes the world. He is incredibly curious about a (sometimes narrow) field of topics, and will tune you out faster than a speeding train full of dinosaurs and Legos the minute you start boring him. I have a difficult time getting him to listen to me fully answer questions he’s asked me before he has already moved on and changed the subject. The idea of sitting him down for some big involved heart-to-heart about “why he’s different” is just…well, it’s just not a good fit for him. I kind of have to laugh at how WHOOSH, over his head it would all go.

Your son might be different. I think so much of this stuff varies, and you should trust your own instincts. But for now, for my son, I choose to supply answers that are asked for, as they are asked for.

This approach doesn’t mean I don’t think about what to say to him, because I do need to be ready with a reassuring script at any possible moment. He is nothing but a non-stop source of surprises and cognitive zig-zags.

This summer, right before school started, Noah climbed into bed with me and snuggled under the covers. And then out of the blue, began to list a very specific, VERY self-aware number of school-related things that he was worried about.

He was worried he wouldn’t be able to listen. He was worried he would get in trouble for talking out of turn. He was worried his teachers would give him warnings all the time for not listening or getting mad over transitions and a number of other impulse-control-related behaviors.

You know what? I always thought hearing Noah acknowledge his struggles would send my heart through the wood-chipper. Instead, my heart soared, because the fact that he recognize the exact, specific behaviors that he struggles with is a HUGE and NECESSARY step towards learning to fully and finally control them, or better cope with them. Yes, he’s beginning to sense that he’s different — he didn’t need me hammering that fact in prematurely, but he did need to know that he could talk to me about it.

And so we cuddled together for a long time, and I tried my best to explain:

Yes. Honey, I know all those things are hard for you. I know those things are harder for you than they are for other kids. Your daddy knows, your teachers know, Ms. M___ knows. And so we’ve all sat down together and we made a plan! A plan just for you. It has your name on it and everything. And that plan will help you with all of those things. And Daddy and Ms. M___ and your teachers and I all promised each other that we would work as hard as we could to help you too.

I waited for follow-up questions about the plan…if he wanted specifics, I’d explain that going to see Ms. M___ each week was part of it, and leaving his big homeroom for the smaller special ed room for math and reading was another.

But he didn’t ask any follow-up questions. He didn’t change the subject, either. He was quiet for awhile, thinking over everything I’d said, processing it.

It was so tempting to keep talking while I had his full attention — omg he’s listening and absorbing I should shower him with everything else I want him to know I love you I’m proud of you You’re perfect Don’t let anyone tell you you’re not It gets better etc. etc. 

“Okay,” he said. “That sounds good. I am glad there’s a plan.”

Me too, kid. Me too!

Photo source: iStockphoto/Thinkstock

About the Author

Amy Corbett Storch

Amalah

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Ama...

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Amalah. Also, it’s pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to [email protected].

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.

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