So Lovely

You know, I did something right.
Something that keeps me alive.
Oh, you sweet little babies.
When you came you let me know
I was finally happy.
You knew me before now, didn’t you?
—“So Lovely” by Lisa Marie Presley

I was going to write a post about causation, prompted in no small part by the very thoughtful post at Autista. It’s been rattling around in my brain for days now — as I wash dishes, read the paper, drive to the store. I even had a first draft written where I went into some detail about what I think may have or may not have “caused” my boys’ autism (for the record, I believe there’s a genetic predisposition). But I’ve decided to scratch it, at least for now, because in the end it doesn’t matter much. They are who they are: two special, quirky, beautiful boys who bring me endless joy. I would not change them, their essence, for anything in the world.

This is what I would do:

I would paint them for the world, if I could paint, in riotous shades of teal and violet and magenta, twin whirling dervishes so alike and yet so different.

And I would film them as they run, screeching after each other through the kitchen, to the tunes of some chaotic kid rock opera. Philadelphia Chickens anyone?

I would sing (though sadly I can not), something a la Kate Bush (she has that slightly manic, happy quality I’m thinking of) as I lift and spin them around and around until we fall to the floor, exhausted and rather pleased with one another.

Lovely, no?

But I would change others’ perceptions of them as we make our way in the world. I would give a mini-lecture on the autism spectrum to every stranger who stared at me at Target, if only I had a spare minute between therapies. I would too.

And I also would, if I could, change the difficult moments — my moments of doubt and sadness. Doubt I have as their mommy that I am not doing enough for them. Doubt, also, that perhaps I’m doing too much. Sadness because for every spectacular day there are many others that are not. Sadness that sometimes my world is going too fast for even me to process.

Exhaling

Crucial IEP meeting, no idea what to expect (but told by many to expect the worst), no firm hold on the law. I know what John needs, I'm told by many on his EI team that he will get something else. I am a master juggler, right? Our days are packed — if they were any more full I'd have to get up at 6 a.m. just to take a shower. Wait, I already do!

But in one week I read two books on IEPs from Wrightslaw (At night...thank goodness for summer TV, there's nothing to watch — except The Closer and Top Chef and the last dying breaths of Studio 60). It's been like cramming for final exams around here. The only thing is the subject matter is our boys, and well, you can't really cram on your children. You either know them or you don't. And I know 'em — I only live and breathe them every single minute of the day, right? But there is a lot to be discovered by comparing a calendar (and it's zillion therapies and classes, etc., etc.) with say... transition testing. Or reading the entire IDEA 2004 Regulations.

In the end, there was a lot of value in doing our homework. It was critical to get two letters from professionals who know John and know what he can do. It was impressive to have two thick binders full of treatment and progress records to plunk down at our meeting. And I think it really helped me focus after I placed my ipod on the table to record both meetings (thanks for the iTalk, dad!) Of course, the most important key to our eventual success was the presence of two charming little boys.

John babbled throughout the meeting. No words, but lots and lots of glorious sounds. He checked in with me several times during the two hours and was cranky only at the end. When I pointed out that John's transition testing took place only two months after he began ABA and before we even increased the intensity from 10 to 16 hours a week, we felt the tide might slowly turn in our favor. On paper, John wasn't looking so great — we were facing very low transition scores, some in the 4-6 month range (don't get me started on the insanity of using these tests with children who are nonverbal!) The representative sent from the autism program studied him intently and tried to get in his space. She smiled a lot, we took that as a good sign.

And so when we got to the point in the meeting where they asked us if we had seen all of the available programs and what were our thoughts for John, we said "We really think he needs 'Dream Program' because of this, this, and this."

And they turned to the representative from the autism program (a halo now around her head) and she responded "I couldn't agree more."

I may have shouted with happiness (no, I don't think I did, I'll have to go back and listen to the recording), but after that everything fell into place for John and a lightness settled over me that I find really hard to explain because it feels so foreign these days.

And the "Dream Program" is this: M-F, 9am to 3pm, a preschool class for kids with autism that uses ABA and discrete trials 1:1. So more of what he's been doing and more of what has been helping and yet not so isolated as he is with his home program.

I feel terrible to give Sam such short shrift here, but there was never any doubt he'd get his program: M-F, 3 hours per day, in a more traditional preschool class for children with a variety of developmental delays. And the hope that he will keep making such great progress, which he appears to be doing at lightning speed these days.

The lightness lingers. What will I do if it is here to stay?

My Kingdom for a Book

John said a word.

The scene: Three Dr. Seuss board books lined up (upside down of course) for John's silent inspection. A common pursuit in the slow hour between ABA and dinner — but today, instead of pushing me away as I tried to intrude in his play, he handed me one book after another and spoke.

"Booo-," he said, looking — not down or away, but intently into my eyes.

"Yes, book!" I said, and gave him a squeeze.

"Booo-!" he repeated, jumping up and down.

Just like that — snap — Joint Attention.

Proud mama. Proud little boy.

Oh June...

Blogging has been relegated to lowest priority in my life, but I am moving it up for awhile. Summer is here, third birthdays are around the corner, our calendar is getting more full every day, and I must write or go bonkers.

We got the results back from our first big metabolic workup and they are still inconclusive. On the one hand, it ruled out "typical" mitochondrdial autism. In other words, a defect normally seen in those thought to suffer from mitochondrial autism was not there. On the other hand, the results still showed clear evidence of a mitochondrial disorder. Which entails another blood test and metabolic panel to narrow it down. They are recommending, though, that both boys start vitamin therapy and we will begin after our next doctor's visit this week.

Our first IEP meeting has been scheduled for later this month. We are speaking with an advocate to prepare ourselves but it seems more or less clear which programs are right for each boy — at least from our point of view. There has been some talk that another program is better for John and I disagree. I don't want to feel like I'm gearing up for a fight here, but I have read and heard too many terrible IEP stories to not pre-stress in advance. And if you know anything about me, that's a full-time job.

John is making great progress from his ABA sessions. We now receive 16 hours per week from our EI team and he is making more and more eye contact. He's even started to imitate words spontaneously and interact with Sam — interactions usually instigated by Sam that entail wrestling and lots of smiles (monitored closely for their tendency to devolve into biting). But still — interaction is interaction! He is also getting much better about being out with me in the world. Meltdowns can often be curtailed by firm pressure to his shoulders and a reassuring look. He loves to draw and "read" his books.

Sam is a whirlwind of talk and movement from the moment he opens his eyes in the morning. He continues to be very social, he greets strangers when we're out and about. His newest obsession is Thomas the Tank Engine and, thanks to his dad, just about owns every single character already. We started private speech therapy 1x/week and he very deliberately uses sentences now in a functional way ("I want juice" or "I want TV"; "I hear an airplane" and "I see Mommy's car"). Of course, he is still quite capable of getting stuck on reciting his videos. But he is also very much a two-year-old with tantrums to match. I am both happy and horrified by this neurotypical-ness.