In one online forum in which I participate, mothers like to end their posts with “TIA”: for example, “My daughter can’t stop itching her arms. Doesn’t seem to be a yeast rash. Her nose is running, too. Anyone else seeing something similar? Allergies? TIA.”

For my first several months in this particular forum, I thought TIA meant, “This is autism,” like in the movie Blood Diamond, how the characters said “TIA” to mean, “This is Africa.” My interpretation made sense, right? This is all autism we’re talking about. All these weird genetic, health, and behavior issues? This is autism. It was only when one mother ended a post by writing out “thanks in advance” did it occur to me what everyone really was abbreviating with TIA.

As you know, for eight months Martin has been on the GAPS diet. Moving from his already clean diet to GAPS was no big leap. I pulled the non-gluten grains (rice, buckwheat, millet, amaranth) and starchy vegetables (occasional sweet potato) he was eating, along with stray thickeners like arrowroot and tapioca. I made sure nuts were raw instead of roasted. I increased, a lot, the amount of bone broth he takes each day.

Overall, GAPS has been helping Martin. Based on bathroom activity, his digestion is chugging along better than ever. Dr. Natasha Campbell-McBride, the author of the GAPS diet, recommends that it be followed for at least two years. That has been my plan for Martin: two years GAPS, and then a gradual return to an organic diet free from gluten, casein, corn, soy, refined sugar, and additives.

Martin is a “mito kid.” He has mitochondrial processing disorder, which affects the way his cells process, store, and use energy. Mitochondria are energy-converting organelles that produce ATP, the chemical “energy currency” of cells. When the mitochondria can’t do their job correctly, the long-term effects are low muscle tone, lethargy, and floppiness. I don’t have a better word than floppiness, by which I refer to clumsiness, and the tendency to lean on whatever is at hand, to drag one shoulder along a wall while walking, to collapse to the ground, to sit with the legs in a W formation. We’ve had some luck treating mito issues with a combination of MitoSpectra and additional levocarnatine. Nevertheless, I think we could be doing more.

My first reaction, with any health issue, is to ask whether I can treat it through diet. I do believe that food offers solutions to most health problems we’ve brought on ourselves, and something found in nature is usually safer than something synthesized in a laboratory. For mitochondrial processing, electrons move through membrane along electron carriers, in a process that releases free energy. Where do those electrons come from? Carbohydrate food molecules, as they degrade to carbon dioxide. (If you happen to be science-minded, here’s a paper that describes the process in more detail than I can grasp.) The GAPS diet is designed to heal the gut, for any variety of gut-related ailments. The carbohydrates that it allows are specific, for example, the sugars found in fruits. But I have to keep Martin’s sugars in check, because of his yeast flares. Lately I’ve been wondering if he might not benefit from the addition of another carbohydrate. (Carbohydrates differ in their complexity. Not all have the same mito effects.) With Martin’s gut doing so well, I’m willing to risk a try at . . . quinoa.

Yes, that’s right. I am boldly straying from GAPS enough to offer Martin a quarter-cup of quinoa incorporated into his food. He still isn’t having any grains; technically, quinoa is not a grain but a seed within the goosefoot family. (Differing interpretations on the grain/seed divide—specifically, whether quinoa is a kind of kitniyot, and therefore similar to the forbidden grains—is why, as I understand it, Ashkenazi Jews were historically reluctant to accept quinoa as kosher for Passover while Sephardic Jews were not, a debate that may have been settled a year ago, when the Orthodox Union began certifying quinoa as kosher for Passover. Fascinating.) In any event, quinoa is certainly not GAPS-legal, and I’m going to try it anyway and see what happens with Martin’s mito processing. Last night, I put together a sort of quinoa tabouli, with parsley, lemon, and carrots. The quinoa was cooked in bone broth, of course. We’re not going hog-wild or anything. Tonight I am planning to make “imitaters,” which are like tater tots except with white beans, seeds, and quinoa instead of potatoes.

Every so often I try to step back and look at the world I’m occupying. Adding a quarter-cup of organic quinoa to my son’s diet is now something I classify as a “bold move.” What person have I become? What is this life?

TIA.

This is autism.

Imitaters are a-fryin’ in coconut oil!

Three years too late, I’ve updated the “About” page. Check out the changes!

Underlying yesterday’s post—underlying the decision to pursue audio or vision therapy, underlying the revelation that sensory processing might be what’s holding Martin back most these days—is an important stopover in this recovery journey. Four years ago, the mother who helped me launch our biomed journey cautioned me to be patient and not to throw the kitchen sink at autism. Work through the issues one by one, she advised. That sounded like sage advice, but how was I supposed to figure out where even to start? When Martin was diagnosed, it felt like everything was broken. Martin had no functional language. He couldn’t sleep without assistance. He ran in circles. Often he appeared not to perceive whether Adrian or I was present in the room. He bolted. He wandered off the edge of playground equipment without noticing till he hit the ground.

For a long time, I did throw the kitchen sink at autism. I had that desperation peculiar to (1) the parents of the newly diagnosed and (2) the parents who can’t seem to find anything that improves the autism symptoms. I wanted to do everything and do it now. I thought we had two years to beat autism, three at most. The urgency was overwhelming.

Those times are over. Martin has improved enough that I no longer think, “Where should I even start?” That has been replaced with, “Eye contact is pretty good. Language is really coming along. He sleeps. He’s connected to me and Adrian, and he looks forward to seeing his friends. Handwriting and fine-motor skills are improving. But the attending—that needs work. Action plan!”

We are nowhere near the end of this journey. No matter. What a difference between where we were and where we are.

He reads. He understands. He writes. We’re doing pretty well.

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.