Monthly Archives: April 2012

Tanked. Temporarily.

Posted on by findingmykid
2

We’re tanked.

This past week Martin has displayed long-forgotten symptoms: clumsiness, running circles around our apartment, low name responsiveness, even some toe-walking. Toe walking! What’s up with that? His attention has gone MIA, and his daytime sleepiness makes me suspect nighttime restlessness. He is inserting into his mouth anything he can get his hands on. And when he can’t get his hands on anything, he simply inserts his hand.

Times like this used to trigger hopelessness in me. All this work, I would think, and we’ve gone nowhere?

I’m more sanguine these days. So we’re tanked—big deal. Paradoxically, Martin’s language has been stronger than ever, notwithstanding the symptomatic behavior. As to that behavior, maybe the blame lies with the onslaught of pollens and other allergens our early spring has brought. Or else residual dust or cement particulates from our recent mini-renovation (we had some work done in the apartment when I took Martin to visit his grandparents over spring break) could be bothering Martin. Most likely, we need to tweak something in his supplementation protocol.

Whatever it is, we’ll figure it out. I know that we’re tanked only temporarily. I’ve seen what Martin can do and know we’ll get back there, and beyond.

Of course, feeling calm overall, on a general basis, does not translate into rationality every minute. This weekend Martin and I were riding a carousel, on horses side-by-side, when I caught him arching his back and stretching his neck to look at the ceiling and even behind him. That’s a sensory stimulant, one that’s been gone more than a year; it used to be hard to take Martin to restaurants, because he would throw his head back so far from the highchair that he blocked aisles, and I fretted about decapitation by waiter or bathroom-bound patron.

On the carousel I was alarmed and disheartened to see the behavior reemerge.

“Martin,” I said, “sit up like a big boy. No throwing your head back.”

Martin complied and straightened his back, but 10 seconds later he leaned back, hands clutching the horse’s pole, and gazed upward.

“Martin, please. Sit up like a big boy.”

Martin complied again, then said, “There are flowers up there.”

“What?” I asked. “Where?”

“Right there!” He threw back his head and pointing to the carousel’s ceiling.

I looked and saw what had caught his eye: lovely flowers hand-stenciled above us.

False alarm. No sensory stimulation. Just Martin appreciating the world around him.

“Martin, those flowers are lovely.”

Adrian helps Martin with his balance on a weekend stroll.

Hiding It

Posted on by findingmykid
13

Kenji Yoshino, a law professor, wrote a book called Covering. To “cover,” according to Yoshino, is “to downplay a disfavored trait so as to blend into the mainstream,” and the pressure to cover is universal, because everyone possesses some attributes that society stigmatizes. Subtle coercion to cover, the author argues, imperils even our civil rights, because society penalizes those who refuse to cover, who refuse to mask their otherness for the sake of fitting in.

I’ve been thinking a lot about Yoshino’s thesis, because I exert a lot of energy in “covering.” I hide the fact that I am an autism mom, and when it comes to Martin, I conceal his ASD—the condition that, arguably, influences his life more than any other right now.

As I’ve explained on this blog, Adrian and I have chosen not to be public about Martin’s having autism. Our closest friends and relatives know, as do our immediate neighbors, and Martin’s doctors and caregivers. Beyond that, we’re tight-lipped.

We withhold the information from more casual acquaintances—people who don’t know Martin well but will probably remain in our future social circle—because we believe that Martin will not always have autism. We don’t want anyone’s dealings with the recovered Martin to be prejudiced by his having once had autism. Indeed, we don’t want anyone’s current dealings with Martin to be prejudiced by his currently having autism.

We withhold the information from strangers so as not to suffer their pity. I don’t want Martin subjected to preconceived notions of autism, not even for a moment. And no matter how much I might want special treatment at in a given situation (waiting in a long line, for example, or chasing Martin down in a clothing store), I refuse to allow anyone to think we need special treatment.

So, yes, I cover. I pretend that Martin is tired, or shy, or unfamiliar with the topic at hand, or better at speaking Spanish than English, or better at speaking English than Spanish. (In later posts I’ll explain more about my techniques for concealing autism. I don’t want to make this post too long.) If pressed for an explanation, I use a euphemism. A TSA agent asked me why she needed to hand-search the dozens of pill and liquid bottles I refused to run through the X-ray machine; I said my son has a “neurological disorder” and that X-ray can change the composition of his medications. An acquaintance inquired why we hadn’t tried to place Martin in a private preschool in our neighborhood; I responded that Martin has “some minor attention issues” that we want to “take care of” before kindergarten.

Are we wrong to keep Martin’s diagnosis a secret? Possibly. Through our actions we may contribute to the isolation persons on the spectrum; if we’re hiding something, does that suggest we believe it’s something that should be hidden? We might also be failing to set an example. If we really believe in biomedical recovery from autism—we do—shouldn’t well tell the world to watch our son and bear witness to his progress?

It comes down to parenting. If I were making the choice for myself, maybe I would sacrifice my own privacy, and risk prejudice, in order to set the example. Many “Aspies” are very public about their way of being in order to combat discrimination (and have created at least one organization dedicated to opposing autism recovery). Our son is too young to make that choice, and as his parents we have to err on the side of protecting our own.

So that’s that. For Martin’s sake I am willing, in at least one thesis, to tear at the fabric of our civil rights.

Once upon a time, I was a teaching assistant for constitutional law. What would my professor think today?

Plan B

Posted on by findingmykid
1

My poor blog. I’ve let her whither. Thank you to everyone who left comments or emailed (findingmykid@yahoo.com) to say you missed new posts. It is beyond gratifying, to know my words are being read.

By way of explanation, I few weeks ago I fell ill. Nothing life-threatening; I’m on the mend now, and going to be fine. Nevertheless, I required a blog vacation.

Vacation’s over.

Since I stopped working as a lawyer, back in January, Martin’s recovery has felt like less of a burden.

(I use that word—burden—conscientiously. Martin’s path is a burden, for our whole family. I don’t pretend otherwise, and I know that one day Martin may read these words and regret that his condition burdened us. For Martin I note that all parenthood, by its nature, is a burden. Adrian and I chose that path, we’re glad we did, we would not want any child other than Martin, and the effort that we expend is repaid a thousand-fold every today that Martin manages some feat he couldn’t do yesterday.)

(Cripes, that was sappy. Sorry, Martin.)

The first morning I became sick, I experienced the full burden again. I woke cramped and barely able to stand. I needed half an hour to believe I could do anything more than lie in bed and moan.

In the pre-autism-diagnosis days, I would have asked Adrian to take Martin to the diner for breakfast and leave me alone. In the ASD recovery world, Martin’s breakfast must be made fresh, at home, and his morning supplementation routine takes an hour to complete, and unless I’ve made advance arrangements, I’m the one who must complete those tasks.

So I did. I dragged myself to the kitchen and fried a duck egg in fat with broccoli. I counted pills, measured oils, stirred powders into tea. I alternated standing at the counter, sitting on a stool, crouching on the floor. Finally I scribbled a shopping list and sent Adrian and Martin to Fairway, to buy myself some peace.

That was Saturday. I muddled through until Tuesday, and then wound up in the hospital, whereupon Martin’s nanny Samara interrupted her own life to come take over my home. Together we made it work until I was steady on my feet again.

Here’s the point: I don’t have a Plan B. I am the one who knows Martin’s routine, to a speck. If I am incapacitated, Martin’s recovery stalls until alternative arrangements are made. That’s what feels most challenging these days—being on call every moment, not having emergency time-off. It makes me realize that I’ve really got to take care of myself, if I’m going to take care of Martin.

Okay. I got the kvetching out of my system. Lest my readers think I’ve returned to blogging only to complain, let me end with the following three points:

1. Lacking a Plan B is no more than what most single parents face, day-in and day-out, whether their children are neurotypical or not. Moreover, many families lack the resources to have a functioning Plan A in place. In so many ways, I am blessed.

2. I’ve returned to blogging! Taking a month off, and receiving so many comments and emails during that time, makes me realize just how therapeutic this writing process has become.

3. Last week Martin and I were having breakfast. Adrian had finished his breakfast and gone to prepare for work. Unprompted, Martin addressed me and remarked, “I hear Daddy blowing his nose upstairs.” Martin expressed neither a need nor a want; he formulated (perfectly) that sentence solely for the purpose of sharing an observation with me. At that moment I needed no break, no Plan B, no time off. Plan A is working. That will do.

Happy to be back.