Tuesday, May 25, 2010

Whose Child is This?

I was picking up N at his OT social-skills group yesterday, and he went--as he always does--to hug the various therapists who work with him there. And, as she's lately been doing, the lead OT reminded him to give "sideways hugs" rather than approach from the front and sort of bury his face into their bellies.

I've been meaning to ask about this, and since there were no other parents clamoring for attention at that very second, I brought it up.

"Hey, L," I said, "why sideways hugs?"

"Oh," she said, "we're trying to teach him a little bit more about appropriate touches...like putting your hand on someone's upper arm to get their attention, and stuff like that."

I grimaced a little. "You think he's getting to an age where it's not appropriate for him to be hugging grown women like that?"

"Oh, no," she said, looking surprised. "It's actually more about the kids. You know how he is...he keeps hugging his friends in the middle of group, or wrestling, and we're trying to work with him on that."

You know how he is? Yes, I do. Or I thought I did. The child I know has pretty much never initiated body contact with his peers. I'm fairly certain that he's never even touched another child in his class. But at group he's hugging? So often it needs to be addressed?

I stood there and grinned...and grinned...and grinned at L, who looked confused. When I explained why to her, she smiled. "He did tell the group today that he likes coming here after school, because this is where his friends are," she said.

Can a heart swell and break simultaneously?

* * * * * * *

My friend A often joking chides me about my laser-sharp focus on N's social deficits to the exclusion of everything else. "If he was found in a heroin den," she'll say, "your response would be, 'He was sharing needles? Appropriately? With his peers? Cool!'"

I can't really deny it. He's hugging and wresting his friends and disturbing the group? Cool.

* * * * * * *

There are times, many times, when--despite my all-encompassing quest to get N diagnosed on the autism spectrum--I still feel isolated from the autism community. I read books, descriptions, and they don't fit my kid, they don't fit my experience. I'll flip from feeling like I have no right to complain, because so many have so much more to deal with than I do, to feeling like N's getting the short end of the autism stick--all deficits, no gifts. (If you missed my self-pitying rants on this subject last week on Twitter, you are lucky. I'm embarrassed for myself.)

I've been trying to find books in which he might 'see' himself--books that might explain why he struggles, and that he's not alone. He seems like he's on the cusp of understanding, but yet, he's not quite there. (Sometimes, my life is nothing but a Parenthood episode.) But I can't find the book that speaks to me, which I fear means none of them will speak to him, either.

Sometimes I even wonder if this diagnosis is right. Sometimes I feel like we're out here all alone, like there's no one who can share our experience, because our experience is that unique. Like we're going to have to figure this out on our own, without the community that supports so many. Not because they won't support us, but because we have no right to ask for it. Because we're frauds, interlopers, pretenders.

(The ASD apple doesn't fall far from the tree, if you know what I mean.)

But then, despite my doubts, and despite his lack of intellectual understanding of his challenges and what they mean, N shows me the truth. He's made a friend at school--a girl from the special day class who is mainstreamed into N's classroom for a couple of subjects. He's starting to become close with another boy who is in RSP with him. And he embraces the group of kids he spends his Monday afternoons with at the occupational therapy center. In fact, as it turns our, he embraces them literally.

He's found his comfort zone, his people, his community. And, if watching N and his friend T say goodbye to each other while I talked with L yesterday was any example, they embrace him as well.



Niksmom said...

The hugs? The friends? AWESOME!!

The doubts about accurate diagnoses? The feeling like an interloper? FAMILIAR.VERY FAMILIAR.

You DO know that your son doesn't need a diagnosis for us to love, accept and support you, right? (Just checking!)

Ambre said...

Yeah, he is not a textbook case. Why is why he doesn't quite fit the textbook description ;)

But he'll make you proud some day in that heroin den, I promise you.

Anonymous said...

This made my day. I have been worried about my N, as he hugs his friends too much in an "inappropriate" way (i.e. they sometimes tell him to stop). The fact that you can see this as the positive that it is helps me a lot. I, too, struggled with the ASD diagnosis, as well as his "official" one: ADHD. But I finally DID find "the book" after 6 years of searching: it's called Developmental Dyspraxia: A Practical Manual for Parents and Professionals. I don't mean to dx your N, but maybe it's something to look into. I'm starting to help out with dyspraxiausa.org, so I'm trying to spread the word regardless.

po said...

It may not be 100% appropriate for N, but Matthew loved this book:


Meg said...

It is remarkable that in the right, comfortable environment he found his people!

Most of us don't fit into neat little boxes or diagnoses. N is not just ASD, he is that plus everything else, from being smart yet anxious to being great at golf. I have yet to find a place where I or my kids fit completely but have learned to take the pieces that work and discard those that don't.

I didn't comment, but had to laugh at your previous post because I could see myself doing the same thing - getting home to realize the key item I went to the store for is missing. Glad you got a day off.

Sarah said...

'But I can't find the book that speaks to me, which I fear means none of them will speak to him, either."

To me, a clear message that it may be time to write your own book. You're certainly qualified: a loving, insightful mother and a gifted writer. I'd not only read it but tell the world to read it too.

Heather @36 balloons said...

My 6yo has dyspraxia and I often think it would be SO much easier if we had taken the route at 4 to get the spectrum dx. I can just picture you swooning at the thought of his warm interactions w/ friends and the rush to make it all "appropriate" at the same time.

valle said...

Hey L,
I've been out of the loop for a while but enjoyed spending a few minutes catching up with you and N.
I always relate so 100 percent with stuff you say and do -- so you can see it's not the diagnosis that matters, we all feel the same stuff.

You were happy that N. hugged, I was thrilled when Aidan got detention (yay, they're taking him seriously; yay, he's rebelling like any 13-yr-old should).

Eventually the diagnosis won't matter to you. You just deal with each little thing as it comes up -- you know N. better then anyone. Just focus on the stuff you know and that you can maybe help with..

I'd say that building those friendships are going to be most important -- giving him the skills to make new friends and giving him opportunities to meet kids who can become real friends.

Sounds like N. is doing great, making huge strides. The little backslides will still happen, but remember those victories!

mommapolitico said...

Very cool. Ever thought about writing a book for him yourself? You're a terrific writer with a strong voice. Think about it - could help him and a bunch of other families and kids.
Meanwhile, enjoy. Enjoy. Enjoy. :)