Thursday, April 12, 2012

The Blue Notebook

Ever since his first day of preschool, Ethan has had a blue binder that travels back and forth from school. I guess you could call it a "communication book" -- the place where the teacher jots down notes about how his day was, and where his speech therapist, OT and PT make notes about their sessions.

I love the binder. Sometimes I wish his teachers would fill it out more often, but I appreciate having the back and forth and knowing what's going on in school. While Ethan can thankfully communicate bits and pieces about his day, obviously as with any child we don't get the whole picture. The communication book is meant to help with that.

I see the binders all around school. Usually the paraprofessionals are carrying them around as they accompany the kids (with special needs) to wherever they are going. Many of the binders have the PECS pictures on the front to give kids a constant visual reminder of what comes next. Ethan has graduated beyond that, but he knows that while he doesn't really look at the binder, it's important. He gets a little worried if he leaves it at school.

I'm not exactly sure what qualifies a child to have a blue notebook. I don't know if it's any kid receiving special education or any child who has an IEP, or what the deal is. I'd never really thought about it.

This morning at breakfast, out of nowhere, Ethan spoke. "Some kids have a blue notebook. And some kids don't."

"You're right," I said absentmindedly, stirring my coffee. Then I stopped.

"I have a blue notebook," Ethan was saying, "but not all of the kids do."

I looked at him. I waited for the why, but it never came. Ethan went back to eating his oatmeal.

And just like that, for the first time, Ethan noticed. Ethan noticed that he wasn't exactly like all of the kids in his classroom. He wasn't upset, he wasn't questioning, he was simply matter-of-fact. But he noticed.

There are a lot of questions out there from parents of special needs kids...questions about how to respond when children start asking about why they are different. I hadn't paid that much attention, because we weren't even close to being there.

My brother Andy is 30 and has never gotten there.

As Ethan sat and pondered blue notebooks I wondered how I would answer the questions: "What's autism?" "Why do I have it?" A part of me understood a little better the man who had written about his son who is profoundly disabled, the one who told people not to pity him, that he felt more sorry for the children who were just a little bit different, who were aware enough to know they weren't like everyone else.

But maybe, just maybe, I wondered. Maybe we could do our best to take that same nonchalant approach Ethan had at the breakfast table, in all his innocence. He noticed the difference without attributing anything to that. Some people have notebooks, some don't. Some people have autism and some people have trouble seeing and need glasses. Some people lose their tempers and some people are sensitive to loud noises.

And what if I was a little more like that...a little more accepting of the wrongs in this world without asking the whys? What if I noticed and compared all of the questioning, all of the resentment? (Why has this family endured so much while this other family has rarely struggled? Why is that person who is so evil still getting away with what they're doing while this person doing so much good is dying?).

Why is it that the more mature and aware and developed we become, the more entitled we feel to ask "But why?"

If I can learn, I can teach. And one day, Ethan will ask why he sees his therapists and others do not (he has already started to notice this as well). And he will ask why he has autism. And I will, God willing, be able to answer that I don't know and tell him it's okay to not have all the answers. And that he's different, not less. And that he is dearly loved.


My Asperger's Teen said...

When my son was around that age, he did ask why one day. I wasn't ready to give him the word "autism" as part of his vocabulary just yet, so I told him that his brain worked differently than other people's brains. I made sure to explain that he was smart and just as capable as anyone else, but that he learned things differently.

I'm still amazed when I think back to how easily he accepted that explanation. Now that he's 13, the questions are more complicated and it's hard to explain when I don't know the answers!

I pray that you have plenty of time before you need to answer why, but I know the right words will come when you need them to.

Wendi Richert said...

Your statement that "he's different, not less" says it all. You will have the right words when you do finally need them.