The Family Room

Bring on the Andrews!

Way back when we were first wading through therapies and diagnoses and endlessly picking little laminated icons off the floor, I remember thinking how overwhelmed and exhausted we felt every time someone suggested something new. 

PECS never sat well with us, in retrospect, I think, because so many of Isaac's auditory processing challenges are situational. That is to say, his receptive language is fine at home and in quiet places, while he has a much harder time in loud, chaotic environments or when he's upset. So while it may have been essential for the classroom, it usually felt unnatural--and like overkill--at home.

The truth is we resisted a lot of suggestions at first but ended up trying just about everything sooner or later. I remember saying snidely to J. one day that developmental pediatricians should hand out two things to newly-diagnosed parents on the way out of the office: a prescription for antidepressants and a lamination machine.

Because if you are a parent of the child on the spectrum, there is only one absolute truth: everything having to do with autism must be laminated. 

 

Social stories, while they seemed really smart in theory, seemed overwhelming in practice. Find images that your child can relate to, add text to them, bind them together and...what?  A book every time we need to do something new? It's enough to make you want to stay inside all day and bolt the door.

We're way past that now, and I have enough perspective to see that, without really noticing, we now weave social stories into pretty much everything we do. Isaac loves and responds to them, and we rarely if ever need pictures anymore to reinforce the story.  He likes to hear them, embroider them, add silly variations. He asks for them when he's upset or nervous or excited, and he sometimes even tells them himself. It's as natural as conversation, if conversation were, in fact, natural. 

But there's another piece here too. Isaac loves our family photo albums. When he was a baby, I remember seeing a craft project in one of the parenting magazines (inspiring in that Martha Stewart way: impressive, while leaving you with the vague sense that you have failed as a parent, even before you've started). It involved making a mobile out of photos so your little darling could go to sleep with the faces of beloved family members dangling overhead. I never made that mobile, but I did go out and get a bunch of little brag books, which I brought to work in the days after I returned to work to try to retain some continuity with my new, and still unfamiliar, mother self.

Isaac has discovered and fallen in love with these books, and he takes great pleasure in pointing out the pictures of "Baby Isaac," Mommy, Daddy, and his grandparents, aunts, uncles and cousins. To this we have added pictures from school for a bit of social reinforcement.

"Who's this?" I asked the other day as we looked at a picture from last year's preschool class. "That's Andrew!" he told me excitedly. "And this?" I said, pointing to another child. "That's Andrew!"

"Really, Isaac," I asked. "Are ALL the kids in your class named Andrew?" I pointed to each one in turn. "Andrew, Andrew, Andrew, Andrew and Andrew?"

He laughed so hard he started to hiccup, and since then he has insisted that we refer to him as Andrew. 

"Isaac, it's time for bed," I said tonight.

"ANDREW it's time for bed," he replied calmly, grinning at me sidelong: his father's grin.

So I complied, marveling at how a simple story about going to school has meandered its way into a game of pretend, and how right it is that he is now becoming interested in exploring the meanings of routine and friendship and family and identity.

Looks Like Cereal

We sat on the school steps, a good twenty minutes after the last stragglers raced by clutching their backpacks.  Some glanced at us, some said hi, some barely noticed as they darted past. 

"Come on, sweetie, time to go in," I urged softly, for perhaps the fortieth time. "Noooooooo," he wailed. "I want another story about going to school."

I relented. "Last one, then we go in, okay?"  "Okay," he whispered back. "Once upon a time there was a boy named Isaac..."  And I told him about getting dressed, and getting into the car, and driving past all the familiar streets, and all the things he would do today.

He climbed into my lap and nestled close to me as I whispered the story to him, and began playing idly with the zipper of his jacket.  A slow smile played across his face, as if he was remembering a private joke.

"It looks like cereal," he announced suddenly looking up. I was totally confused. "What looks like cereal, sweetie?" And then I saw it: the little yellow rectangular piece of velcro at the bottom that secures the waistband and helps keeps the wind out. The fibers looked for all the world like a piece of shredded wheat.

"You know, you're right. It does look like cereal."  "Yeah," he answered softly, and snuggled in a little closer.

Finally I urged him into the building, a good forty minutes after we'd arrived. He dawdled by the library for a while and then reluctantly followed me down the hall. We stood there silently as he decided his next move. And then, without any warning at all, he darted into the classroom and joined the other kids.

I walked back to the car, and all I could think was how unfair it is that the most ordinary things can be so excruciating for him, and how blessed he is that even in the throes of his most difficult moments, he can stop to appreciate the language of things, the poetry in a piece of velcro.

Special interests

It's been a rocky month; my apologies for being so inconsistent. The truth is, there is a lot I can't write about right now; not because it's so dramatic or difficult (though sometimes it feels that way) but because I need some time to process things.  We are at a kind of crossroads once again.

It was a rough Saturday and a lovely Sunday, which, by the way, is a kind of pattern over here.  I suspect that it's because J. and I tend to be tired out from the week, and thus sometimes a little short on patience on Saturdays, while Isaac is in the same boat. His solution: act out, and then act out some more. Ours?  I wish I knew.

But after an afternoon of screeching in the tiny Chinese dumpling house (and I mean tiny: five tables) and lying down on the street, sobbing, and refusing to get in the car, he finally agreed to go home, eat dinner and take his bath, which made for a much happier (and cleaner) boy.  And today we had a lovely morning. 

Lately, Isaac loves to look at family photos, so we've added some snapshots of classmates from the past years. We sat on an overstuffed chair in his room and he showed me who everyone was. "Who's this?" I asked, pointing to a dark-haired boy. "That's Andrew," he responded. "And who's this," I said, pointing to a sandy haired boy to his left. "That's Andrew!" Isaac answered, grinning.

"Andrew?" Are ALL of the kids in your class named Andrew?  Andrew, Andrew, Andrew, Andrew and ANDREW?!?"  He let out a snort of laughter.  "Again!" he demanded.  And so I complied, and he sipped his milk and ate bites of pancake, and he was happy and at ease.

*

Later, I asked him why he'd been upset the day before. "Because I wanted to go on the elevator."  He's processing his feelings--so good--and yet we are a little worried about this special interest of his: his obsession with elevators seems so narrow, and it feels lately as if it is filling more and more of his time.

The funny thing is that since his diagnosis, I always wanted Isaac to develop a special interest.  I think I sort of half-consciously believed that if he had a special interest that would mean he's more Aspergian, and if more Aspergian, then...what?  But his early language delay and his continued challenges with pragmatic language complicate things quite a bit.  It's time for a new evaluation to look at all of it: the social, the emotional, the cognitive, the communicative.  He's had incredible gains, it's true, but we just cannot tell whether his recent anxiety and increased rigidity are a product of stress, or something deeper.

If. And. But. 

It makes my brain hurt to think about it.

And so the calm predictability of elevators, with their neat rows of buttons, their reliable routes, their confined space and muted sounds and minimal decoration, yes. They seem soothing, somehow, and I can understand their allure.

Especially as, humming to myself, I cut vegetables in too-neat rows for dinner.

What I did on my winter vacation, and then some

In our last episode, Isaac and I walked hand in hand into a dark and stormy night as J's plane took off for our annual family visit to New York. We awoke the next morning to ten days stretching out before us; ten days, I should say, in which our house was to be painted while we were conveniently away.  Part of the goal was to move Isaac's room to a quieter part of our flat, so he'd have a space that was more accommodating of his noise sensitivity. 

Oh well. 

But I have to tell you we made the most of it; I moved furniture, made pancakes and french toast, we went to museums, playgrounds and out to lunch together.  We read books, and when we needed alone time, Isaac played on the computer while I moved furniture again. And again.  

After all the Sturm und Drang of the first night, it occurred to me that this was a kind of gift: ten uninterrupted days together, on our own schedule, just following our own rhythm.

It was lovely, by which I mean to say that it was also completely exhausting. And while I hope that we quickly get over the no-fly policy, it was time that I will always treasure.  Here's a preview of Isaac's new room, which we are slowly introducing to him:

Thank you to everyone who sent notes, Tweets, emails and/or called to check on us. More soon.