Blogospheric Rebound

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.

Martin: The Only Cause That’s Got Me Doing

I’m kind of a nervous flyer. Whenever I fly, before take-off, I say a prayer along these lines: “I hope we get where we’re going. If we don’t, I trust that I’ll end up someplace even better. I trust that we’ll all end up someplace even better. But still I hope we fly safely, and I hope that the safe conveyance reminds me that life is limited and I ought to use it well.”

Tuesday night on the plane to Israel, I started to say that prayer, and I had an epiphany:

I don’t, at this moment, have fears for myself. I have fears only for Martin.

That’s not to say that I don’t worry about dying. Or, you know, a horrible disease or coma-inducing accident, or terrorist attack, home intruder, flesh-eating bacteria, mountain-lion bites, impalement. The usual.

I do worry about all those things. But my fears for myself have taken a backseat. A distant backseat. Way back, like at the swaying end of a double-length bus. As I recited my pre-take-off prayer last night, I had a feeling like, “If it’s my time to go, it’s my time.

But who will take care of Martin?

Martin is the only grandchild of my mother and stepfather. I know they would step in without hesitation and continue his biomedical recovery. And they’re not alone. My father, my siblings, my parents-in-law, my brother- and sisters-in-law. Any one of them, or all of them. They’d have a lot to learn, but they’d do it.

Then again, deep-down I wonder: How could anyone do what Adrian and I are doing for Martin? More accurately—and I’ve admitted: I’m a control-freak—: How could anyone do it to my exact specifications? The countless pills and liquids, the fifteen HANDLE exercises daily, the RDI, the Track Two doctor visits across the country. The faith and determination.

If something happened to me, would Martin still be able to reach his potential for recovery?

That’s it, then. In my whole life right now, the thing that matters most (maybe the only thing that matters?) is my son’s recovery. My pre-flight prayer now is simply that I stick around to see it through.

To own the truth, I’ve long been a person with a cause. Usually the cause involves animals, like ending the carriage-horse industry, regulating backyard breeding operations, or banning battery cages. But I’ve never been a person who took enough action for her cause. I give money. I speak out when asked. I hope and wish. I don’t do.

At least, not until now. My cause now is Martin, and I’m doing. Damn it, I’m doing.

Okay. The object is my son, and therefore this particular cause is just one step removed from pure selfishness. Moreover, it can (I trust) be accomplished entirely. I can recover my son. I can make him indistinguishable from his neurotypical peers. That fact alone separates Martin’s recovery from, say, world peace, or eradicating poverty and disease.

Still, it’s a cause, and for the first time ever, truly I’m stepping up.

Once Martin is recovered, what’s next? I have a sense that this episode could herald a new chapter in my life, one of doing instead of hoping and wishing. Maybe my cause will be promoting biomedical recovery, or defending practitioners like Dr. Usman who devote themselves to recovering children. Maybe I will stick to animal welfare, with the new perspective of having felt compelled to feed my son meat as part of his recovery.

Some years ago, when I was considering a career change, a friend told me to remember that a life is many decades long, meaning that what seems earth-shattering at one moment may in time reveal itself as only a bump in the road.

Not to be fatalistic (just contemplative), I’ve had four decades already. If I can recover my son, I will consider them well-used—even if, in time, this journey comes to seem only a bump in the road.

As for Martin, our efforts now will give him many decades in which to do whatever he wants, free from the grasp of autism.

Your blogger, hiking to the ruins at Avdat, southern Israel.