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.


Thursday, May 20, 2010

The Anatomy of Stupidity

My weekends have become these insanely complicated machines. No...contraptions. Wacky contraptions, with too many moving parts and a jerry-rigged, overused, unreliable engine.

That engine? My brain.

Let me set the scene. It's Sunday. I've already navigated my crazy morning: the end-of-year presentation at Hebrew school, which required me to present on N's behalf after helping Em finish up and print out her "slides" the night before; the potluck following, for which I almost forgot to make egg salad, and so was up until close to 1 am peeling and mashing and mixing; the hand-off of Em to Baroy so she could make it to her afternoon soccer game while still getting something in her stomach. In a few hours I have a Pampered Chef show to go to, and I'm hoping my friend C will come with me; she's offered to let N and I hang at her house with her and her younger daughter for the couple of hours between events while her older daughter goes home with another friend; she says her husband will watch the kids while we go to the show.


Oh, shoot. Not going home means I didn't get a chance to pick up my checkbook. How am I going to buy anything at this show?

Carol? Do you know if she'll take credit cards at this thing?

Hmm. Maybe I should get some cash, just in case.

Nah, I don't want to go by the bank; I don't know where a MyBank branch is, and the others charge so much money. How about a grocery store? I have stuff to pick up, and I can get cash there.

Perfect. There's a Ralph's right across the street. While you get OlderDaughter from Friend'sHouse, I'll run in and get some cash.

[I pick up my iPhone, turn it on.] Oh, shoot. My iPhone's really low on batteries. OK if I plug it in in your car? Thanks.

[We pull up in front of Ralph's; C suggests I leave the phone in her car so it will keep charging, since it's pretty much useless at this point. I go into the store.]

OK. I should pick up a couple of items before I get my cash. But what do I need? ... Oh, shit! My grocery list app is on my iPhone...and that's in C's car. ... Think. Think. Oh, right. Laundry detergent. I definitely need laundry detergent. But what else? I know there are at least three other items, but...I just can't remember. Damn, my brain is fried these days. How can I not remember anything that's on my shopping list? Must be stress.

[Next, I agonize over my laundry detergent purchase.]

I really want to go more 'natural,' but All Free and Clear is what I've been using since N was really young, and he tends to break when I use a new soap, and I'd hate to cause an issue. And which size bottle should I get? Isn't it cheaper at the Vons near my house? Maybe I'll just get the small All to tide me over until I can decide what to do about changing or not.

[I finally make a decision. Wondering whether C is already waiting--it's taken me a while to consider all the options, after all--I quickly pay and rush outside, just as she's pulling up. Perfect. I settle into the car and we take off. After saying hi to OlderDaughter, I immediately begin to babble.]

It was so funny, C. I left my iPhone in your car, and I couldn't figure out what was on my shopping list without it. My brain! Here I was, at the grocery story to pick up some things...and I couldn't figure out what I needed to get! Isn't that crazy?

What do you mean, that's not why I was there? I...

Oh, no. Oh my god.

Thank god the Pampered Chef lady took credit cards.

And that's all I have to say about that. Because that's all I can remember.


Thursday, May 6, 2010

The Power of the Pathetic Email

It was all my fault; I'd totally screwed up.

There are details, there are ins and outs, there are explanations and excuses. But the truth is, I'd told Em a year ago that I'd sign her up to be an independent Girl Scout--a Juliette--so that she could be a Program Aide at a one-week "twilight camp" she's been going to since she was in Kindergarten. And I never filled out the form. Another mom tried to save me a month or two ago, and the second I hit the teensiest roadblock, I dropped the ball again.

It really was my fault.

Yesterday afternoon, Em called to tell me that she was going to a friend's house so wouldn't be home when I got there; she sounded sort of off, so I asked what the matter was.

"Oh," she said, reluctantly, "it just looks like I won't be able to do Twilight Camp, since signups are tomorrow."

Immediately, tears sprang to my eyes. Shit.

I told her how sorry I was; told her I was at fault; apologized up and down. She kept saying, "It's OK. It's OK." But I could hear the tears in her voice.

"Are you crying?" I asked at one point.

"No," she said. "I just have a stuffy nose."

It was right then that my heart broke apart, because, you guys, she was totally lying. Lying to spare my feelings.

I tried calling the Girl Scout office when we got off the phone, but no dice. So when I got home--when we had a few minutes to ourselves--I pulled Em aside.

"I'm not going to be able to do this without crying," I said, already starting. "But stick with me."

First I told her that what she'd done on the phone that afternoon was a remarkably generous thing, and I couldn't be prouder of her. That started her tears.

Then I told her that it was really important to me that she understand that I took responsibility for what had happened. "I screwed up," I said, and yes, I use that kind of language with my kids, sue me. "I didn't do it on purpose, but it was my responsibility. I have a million balls in the air, and I knew one or more of them would drop, but I didn't want it to be your ball...I hate that it was your ball."

"But I don't blame you," she said.

I stopped her then, told her I needed her to understand that it was OK to be disappointed with me, because whether I'd wanted to or not, I'd disappointed her. By now we were both sobbing.

"It's OK to be upset with me," I said. "It's OK to love me and be upset with me. And now that I've said that, it's also OK for you to then forgive me."

"I forgive you. I'm not mad at you. Really, I'm not."

And we stood there in the middle of the kitchen, a scene out of a freaking prime-time melodrama, hugging and crying and crying and hugging, rocking back and forth.

But I couldn't let it go. We were fine, but damn. That kid just doesn't deserve to be the casualty of my screw up.

Which is when I decided that that was what I needed to tell the Girl Scouts. After a sleepless night, this morning I looked up the email address I needed, and essentially threw myself on the mercy of the court.

The email I sent read, in part:
Hi, L:

I'm trying to reach whoever is in charge of the Twilight Camp Summer program, the one through LocalScoutHouse, to throw myself on their mercy...

Here's my sob story (and my daughter's): Last year, her then-Juniors troop disbanded after bridging to Cadets. Because Em was going to be spending this year training for her bat mitzvah (which requires lots of lessons in addition to practice), I suggested she take a year off from scouting. She was against it for only one reason: Every single year, since her Daisies year, she has attended Twilight Camp, and ADORES it. Last year, she was a Program Aide, and it was seriously one of her favorite weeks EVER. She didn't want to stop scouting this year, despite lack of time, simply because she wanted to be a Program Aide at Twilight Camp.

I promised to sign her up as a Juliette so that she could do that, but for a number of reasons (mostly my confusion over the forms), I just never got around to it. And now her friends are talking about how Twilight Camp signups are today, and she came to me last night absolutely in tears, so disappointed. She's not mad at me, just sad.

And all because I screwed up.

Any chance you can help me? I made one simple promise, and I messed it up...Any chance I can get her signed up to be a Program Aide?...I don't mind paying the GS membership fee or any other fees necessary. I just need to undo my own mistake so my kid doesn't pay for it.
When Baroy called this morning to tell me someone from Girl Scouts had called, had sent him some paperwork, and that all we had to do was show up at signups this evening with a check and it would all be OK, I was actually shocked. It had been a Hail Mary pass, fueled by Jewish guilt. I never thought it would work.

"You're kidding," I said.

"Nope," he said. "They basically said it was the most pathetic email they'd ever gotten, and so they decided to take pity on you."

When Em called this afternoon to squeal in excitement (and, as an aside, don't you wish I worked for you? I swear that I actually do occasionally do my job...), I said, "Well, those were a lot of wasted tears."

"Not really," she said. "It was good. It was a bonding moment."

And it was. And now that it's turned out OK, it's one that I'll actually treasure. Me and my girl. Bonded. Over my screwup.