Monthly Archives: August 2012

The Good Kind of Sleeplessness

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I’m drafting only a short post this evening.

I’m tired, you see.

I’m tired because I didn’t sleep well last night. I lay in bed awake for several hours, until 2:00 a.m. I woke when Martin clambered into my and Adrian’s bed, around 8:00 a.m.

Here’s the thing: Martin didn’t keep me up until 2:00 a.m. He didn’t wake at midnight and rustle for hours while I hovered nearby, iPad in hand. Nor was I anxious, thinking that he’d be up as soon as I closed my eyes, or pondering his future.

Incredibly, I wasn’t able to doze off because I wasn’t tired. Each of the previous several nights, I enjoyed eight or more hours’ sleep. My body, apparently, felt sprightly enough to play a few additional games of on-line Scrabble and then gaze two hours at a near-full moon.

Since Martin’s ASD diagnosis almost two years ago, and even before that (from age 14 months on, he had sleep troubles), and even on vacation (I worry a lot), I cannot recall a single night when sleep eluded me because I wasn’t tired. Between 16-hour days managing Martin’s recovery process, and worrying about whether we’ll succeed, and sitting up with him, I function in a state of permanent exhaustion, punctuated only by degrees. Most nights, I lose consciousness before I finish a 30-second prayer. The remaining nights, anxiety so clogs my mind that I give up trying to sleep and wander the apartment “getting things done” throughout the night.

We’re on vacation this week, in a rented seaside house that compels relaxation. Martin has been sleeping well. My mother-in-law is traveling with us; she wakes with Martin each morning and washes and dresses him before releasing him to me and Adrian. Despite the crap summer we’ve been having, I am sleeping.

I’m off to sleep more now.

Blogospheric Rebound

Posted on by findingmykid
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Whenever I’ve posted as I did Sunday—that is, when I’ve complained—I’ve wanted achieve the blogosphere equivalent of a rebound. I’ve wanted, at least for my poor readers’ sake, to enumerate what’s going well, even if Martin’s progress is scant. Because, really, who will keep reading when I spew self-pity?

And so it is this evening: time to share some highlights.

•            He sleeps. We’ve had more than three weeks’ of uninterrupted nights. At 7:30 pm, Martin takes his final pills of the day, brushes his teeth (I assist), and reads a book with me. Then I deposit him in his bed, kiss him, declare my love, remind him to “sleep until morning,” leave the bedside light burning, exit, and expect not to see him again until 7:00 am, give or take. The reminder to sleep until morning is probably more superstition than effective guidance, but why mess with a working formula?

•            He tells me when it’s time to go. I can trust Martin to alert me when he requires a bathroom visit. True, he often gives me only 12 seconds’ notice, while simultaneously doing a jiggly dance and yelling, “I need potty! I need potty!” Nevertheless, I no longer have to drag him into every restroom we pass, which I used to do fear that he wouldn’t tell me if he actually had to go. I cannot recall his last daytime potty accident.

•            He interacts. We’re on vacation, and one of Martin’s neurotypical cousins, who is just three months younger than he, has joined us. They’ve been playing together. The cousin brings more focus and determination to the effort; she’ll turn to an adult and ask, “Why does Martin say ‘no’ so much?”, or, “Why doesn’t Martin want to do this?” But Martin participates, too. He chases his cousin and waits for her to chase him, and he drifts into her vicinity to check out what she’s up to. Eventually most of their play comes to resemble physical comedy. That’s what three- and four-year-olds do, right?

•            He checks my face. I credit our RDI work for this. When Martin and I are reading together, he looks to me for a cue of when he can turn the page. When Martin is tempted to enter unknown territory (to venture behind potted plants at the airport, for example, or to go upstairs in the vacation home we’ve rented), he seeks visual acknowledgment of whether the idea is a good one. (When I shake my head no, he ignores me and enters the unknown territory anyway. Again, that’s what three- and four-year-olds do, right?)

There you have it, poor readers. Four things that are going well.

And do you know, poor readers, that I don’t write a post like this only for you?

I write it for me, to remind (to reconvince?) myself that I believe in biomedical treatment for autism, that I have confidence in this path we’ve chosen, and that no matter how long the struggle, I will never give up trying to recover Martin.

Hard Truths

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Where have I been, these two months?

Let’s talk hard truths.

I’ve been dealing with Martin, who’s been nowhere near where I’ve wanted him.

Over this summer, something went awry, and his progress hit a plateau. I did not see significant improvement.

Honestly, I don’t really recall seeing any improvement. We had some firsts, like supermarket walking and approaching a stranger. At the end of July, a friend sent me an email stating that her husband, upon interacting with Martin for the first time in several months, “thought he seemed great—real improvement since last time!” But the jagged ascent to which I’ve become accustomed—progress, little setback, progress, little setback—evaporated. At times the summer felt more like uneven descent: no progress, little setback, no progress, little setback.

Finding My Kid is “a parent’s real-time blog of autism recovery.” It’s hard to post reports when no recovery is evident. It really is. It’s even harder when the author descends into hopelessness, into questioning whether she’s abandoned her career, her church work and activism, and large chunks of her social life in pursuit of a goal that never will be reached.

Then, two weeks ago, Martin tanked. I mean, tanked. One day I felt like, though progress had leveled off, at least I had a child without perceptible autism, and the next day I had a child with myriad classic signs of the disorder. In our apartment Martin ran compulsively to and fro, chanting “d-d-d-d-d-dah, d-d-d-d-d-dah.” He lost eye contact and name responsiveness. He threw tantrums when not allowed to watch one video repeatedly. Echolalia resurfaced. It was as if a year of progress disappeared overnight.

I consulted with his doctors and therapists. The prognosis was unanimous: stress. Adrenal stress, systemic stress from doing too much. Martin’s delicate system cannot keep up with the amount of detoxification we’re imposing.

We pulled back immediately. I took him off almost every agent meant for detoxification, whether heavy metals, parasites, viruses, or otherwise, and I kept him on only supplements and agents meant to support his adrenals.

With those changes, Martin shows signs of improving again. The repetitive behaviors, though still present, are diminishing. He’s making eye contact, albeit unsustained. Adrian and I are subjected to near-constant whining (hey, Martin is a four-year-old, after all) but fewer tantrums. I’m not going to say Martin’s recovery is back on track. I’m not even going to say we are where we were a month ago, when I already was unhappy with his progress.

I will say that, I hope, the ship is turning again.

So why recommence blogging now?

Because I have no excuse not to. Finding My Kid comes with an honesty pledge. Posting reports only when recovery is proceeding apace—well, that’s just not honest.

See you soon.

[Addendum: If you’re taking the time to read Finding My Kid, you probably already saw the piece in this morning’s New York Times about the the links between autism and immune disorders. I’m always happy when the mainstream press edges toward acknowledging that autism is medical and should be treated as such.]