Crystal Ball, Batteries Not Included

Whenever I meet the parent of another child with special needs, particularly one with sensory, social or speech issues, I always feel an intense curiosity. How do you talk about your child's challenges? When did you know he was different? What is he like at home/at school/with you/with other kids? How does he manage in supermarkets and parties and cars and restaurants and school and planes and barbershops? How do you communicate? Does he sleep? What does he struggle with and what obstacles has he overcome? It's a limitless sea of questions that, owing to common decency, respect for privacy and good old-fashioned social convention, can't just be gushed out at will.

Pat of this is magical thinking--the idea that by talking about this whole "special needs" business, we can somehow make it all make sense. This was especially potent during the "is he or isn't he" early days, when we so desperately believed that if we only understood things better we would be able to see that faint line in the sand, and know where we were in relation to it. You know, the subtle difference (or is it a giant sucking void?) between "just taking his time" and "you-know-what, not otherwise specified."

In my more self-critical (or possibly self-aware) moments, I wonder if this curiosity is just another way of asking the universe for a glimpse of what will happen in the future. Will he be happy? Will he have friends? (Cue Doris Day singing "Que Sera, Sera." You get special bonus points if you can name that film: one of our favorites.)

But let me take a step back and tell you what I believe. I believe that we are in such an early stage of learning about this stuff that we have no language or perspective yet. I believe that we are standing so close to this painting that we can't see how the individual brush strokes relate to each other, much less what it looks like or could possibly mean. I believe that, until we have a more precise way to pinpoint and talk about our children's challenges, we will remain in the dark.

I also believe that we on the front lines -- parents and teachers and therapists who see, work with and love our kids every day -- are the greatest resource available to figure this whole thing out. So, in the interest of not being a pest, I do try to control myself, but I still ask questions. And I hope that by talking to each other and remaining open and curious, we will start to see the patterns, and how they relate to each other, and, bit by bit, find a way to better understand and help our kids.

Update: Kristen at From Here to There and Back posted a lovely companion piece to this post earlier today about a related question: "How do I talk about my son’s challenges—with my son?" I hope you'll read it and weigh in with your thoughts.

Comments

[b]

The Man Who Knew Too Much, Hitchock?!...;)

[kristen]

Hi Susan,
Thanks for the link. I learned something from the comments on my post (don't you love it when that happens?!) We should talk about this stuff more, with each other and, yes, with our kids. What we get from each other—those nice little phrases like, "everybody has strengths, everybody has something to learn"—will go a long way toward easing our way into the conversation with our own children, and to some extent (as I think about it now), with their siblings and friends.

So thanks again for getting the whole thing started. You really do get me thinking...hmmm, I was just tagged...

And, yes, it was The Man Who Knew Too Much (unlike, me, who seems to know very little and had to google it to get it right!)

[Vicki Forman]

"you-know-what, not otherwise specified."

I loved this. It's a perfect description of what it's like to head, toe by toe, out of not knowing, into know. Bravo for a great post.

[Susan E]

Oh, I forgot to announce the results of our little experiment. Yes, B, the answer is: "The Man Who Knew Too Much." You win a gold star.