Q&A: special needs child

Katie writes:

"I have a 3-year-old son with autism and figure at least some of your readers have experience with special needs. My boy was diagnosed as having moderate autism just before he turned 2, and I am so proud of how far he has come. (I could write a whole separate e-mail about all of the therapies and interventions he has endured.) He is very verbal now and, though he is in a special preschool class, I believe he will be mainstreamed into a regular classroom by elementary school and be almost indistinguishable from his typical peers.

My dilemma is whether I should ever tell him about his autism. He hears me speak of it often now; I have no qualms about telling someone he is on the spectrum, partly because it explains some of his behaviors that new friends may find odd, and partly because I am so proud of all the progress he has made. But he is getting closer to the age when he will really pick up on what I'm saying when I speak to others about him.

I don't want to completely ignore it or act as if it never happened or make it into this big secretive talk--"Son, let's sit down for an important talk about something terrible about you." It is a part of who he is, a part of his past and present. I guess what I'm looking for is wisdom from others who may have gone through this before. Do I stop mentioning it so much? Do I wait for him to ask me something down the road? Do I phase out the word "autism" as his symptoms show up less and less?"

Hmm. On the one hand, I feel like he's going to know there's something different about him. On the other hand, you don't want him to grow up thinking there's something less about him. So how do you balance the two--acknowledging that he's got some things that are different about him but also letting him know that he's great the way he is?

I wrote that first parapgrah three weeks ago, and have been sitting on this post ever since, trying to figure out what to write. The fact is, I don't know what it's like to have a special needs child. It would be disingenuous of me to talk about it, I think, because I've never had the experience of parenting a child who isn't always going to be received easily by the world. (I definitely think I have a special responsibility in raising two white men in America, but that's a different post.)

I'd love to hear from moms and dads of kids who don't fit neatly into the boxes that we expect kids to fit into. Not just kids who have autism, but kids who have any other kind of developmental issue, kids who have chronic illnesses, kids who look different.

How do you manage their "issues" (treatments, therapies, medical inteventions, etc.) while still loving and respecting them as people? How do you straddle the line between living your experience as the parent of a special needs child and honoring their experience as a special needs person? What if the "special need" is something that isn't recognized by the larger world (like being a highly sensitive or spirited person)?

Please talk about it. If you want to link to other supportive areas of the internet, please do. (If you type in the http:// before the www part of the address it'll automatically hyperlink so people can just click through your comment.)