Me in This Equation

The process of recovering a child from autism steals a lot from the primary caregiver. Anyone attempting to recover a child will tell you the same. In my case, I surrendered my law-firm career, most of my time for writing (in the distant past, I wrote fiction, and essays on topics other than autism), and some portion of my social life, and I became a full-time “autism recovery specialist,” i.e., cook, researcher, therapy coordinator, nurse, medi-van driver, HANDLE and RDI provider, statistician/evaluator, proselyte, and housemaid. On top of all that, I have a husband, who is not on the GAPS diet, and who is not recovering from autism, and who nonetheless wants to be fed and, occasionally, conversed with. I am doing everything for Martin, doing some for Adrian, and doing very little for myself.

Well, enough! At least, “kinda sorta enough in a way that doesn’t compromise Martin’s recovery”! In the past few months, I have found that being a full-time autism recovery specialist is getting me down. It is the best job in the world, of course, when Martin is showing rapid progress, as he did this spring. In fact, it is a pretty good job whenever. But I feel like almost everything that has to do with me has been squeezed out of the schedule.

Please, please, please don’t mistake this post for ingratitude. I realize, fully and completely, how lucky I am that Adrian’s income can support our household and Martin’s recovery, without my absolutely needing paid employment. On top of that, we live in an area where therapy options abound, organic food is readily available, and Martin can attend a self-contained school closely fitted to his needs. I am thankful.

Maybe my thankfulness is part of the problem, though. When one voice in my head says, “Hey, wait a second—where do I fit in this equation?”, there is a whole chorus that responds, “Oh, shut up. Don’t you realize how lucky you are?” Then the first voice shirks and whispers, “That’s right! I am lucky. I need to buck up and forget about the ‘me’ here.”

Is this a healthy way to live?

That’s no rhetorical question. I really have pondered it, at length. Less than two years ago, I wrote on this blog that Martin’s autism has caused me, maybe for the first time, to act on my convictions. To do something. If Martin recovers, I wrote, that will be enough for me. I will have achieved. My life will be a success. I ended that post this way:

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.

Lately, I have been wondering whether I need to rethink that sentence. Not the entire post. Just that sentence. I want to recover Martin. I want his recovery more than I ever have wanted anything.

Yet as the weeks and then months and now years of this recovery process have rolled by, and no end has come into sight, I have begun to question whether recovering Martin is enough. The first 38 or 39 years of my life, the years before this recovery path, were spent in preparation for future goals. Since childhood I have wanted to be a writer, with a bent toward writing about religiosity. Because I crave security, I decided that I also would become a lawyer; I seemed pretty good at the skills that go into lawyering, and hey, if there is any profession forever in demand, it’s lawyering. So I worked hard in college and then earned a master’s degree in theology and then went to law school and then clerked for a judge and then joined a law firm and built a litigation practice. Martin entered the world shortly before my 36th birthday, when I was on a break from lawyering in order to complete an MFA degree in writing. When the grueling mommy hours of Martin’s infancy expired, I finally felt ready to stop preparing and start doing. I returned to my law practice, embarked on a major writing project, assembled Martin’s preschool applications (that’s a New York City thing), and looked forward to coasting through the rest of motherhood.

Then autism happened.

What became of the doing? Of the writing and lawyering I had toiled to make possible?

They fell away, tucked behind the relentless routine of autism recovery—the food finding, the cooking, the research, the dread that any moment not spent on Martin is a piece of recovery he’ll lose forever. Or is it? When I started blogging again in January, I said this:

I now understand “the long haul.” I think that, when I started the process of recovering my son, I didn’t really understand how long one might need to haul. . . .

 Fortunately, I no longer fear that some mythical window will close when Martin is five (he’s five now), or seven, or any age. A mother of a recovered 14-year-old told me recently, “Our best year was when he was 12. Twelve years old is when he made the most progress.” Twelve years old is a long, long way off for Martin. If that turns out to be our best year, so be it. We’ll get there.

Now I have realized something more: I can’t turn off the “me” for all the years until Martin is better. For more than three-and-a-half years now, I’ve put everything on hold in order to recover Martin. And I’ve realized I just don’t have it in me to be so selfless for so long.

So I’m making some changes. Not any changes to recovering Martin: We are still doing GAPS diet and biomed and assorted therapies and social-development programs. Instead, the changes are for me. I’ve sorted what I do for Martin into “what must be done by me” and “what can be completed by someone else.” Food control and home-based therapy—those are mine, or at least areas that I must closely oversee. Doctor visits and research into new therapies—mine exclusively. Homework help, laundry, cleaning up after the cooking, chauffeuring—well, those I could reasonably surrender. Very reasonably.

I’m starting to draft real articles about autism recovery for publication not on this blog, publication for which I may need to surrender anonymity. (Writing more. About autism, of course.) I am committing to CrossFit four times per week, not just when I can “manage” it. I am rekindling some of my work with the synod, the governing body that oversees churches in my area. And I have taken a new lawyering job, albeit part time, in a whole different field. (I won’t say too much, except that it’s a field I’ve become interested in because of autism. Of course.) If you’re wondering how all this will be possible, if I don’t give up any aspect of Martin’s recovery process yet still want to sleep, here is the answer: I’m getting a few more hours of childcare per week and three hours of household help daily. No guilt. I’m working again. I can pay.

I’m still an autism recovery specialist.

Just maybe not so full-time.

Martin. And, um, Dora. This kid, Martin. I love him so much.

Martin. And, um, Dora. This kid, Martin. I love him so much.

9 thoughts on “Me in This Equation

  1. Good for you! I am completely with you on this. After a few years of autism recovery, I started to take some time for me, deciding to put my youngest in a twos program three mornings a week so I can have some kidless time for the first time in forever to use my mind for other things (and write again!). I felt a bit guilty at first, like any time away from autism recovery and my children meant I was not doing enough. But, of course, you can’t live like that. Without nourishing ourselves (as many have said before), you can’t nourish your children. We are all a bit lighter and happier now!

    • Mega-thanks for this comment. Sometimes I feel selfish. Other times I think: It’s not selfish to take the steps necessary to see this recovery journey to completion. Good for me, and good for you!

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