We’ve lost some more foods.

A couple months ago I took Martin to Connecticut see a naturopath-allergist, who used a metal rod and a fancy computer set-up to test Martin for sensitivities to different phenols. This testing was at the recommendation of Martin’s homotoxicologist, who also referred us to this naturopath. The panels came back and said Martin is sensitive to a lot of foods he currently doesn’t eat anyway (soy, corn, milk protein, potatoes, berries, etc.) and also some foods he does eat—a lot. Foods like garlic, onion, eggplant, peppers, and egg whites. That allergist said we must avoid all those foods. Then he gave me some drops that I was supposed to add twice daily to Martin’s routine, diluted forms of the phenols that would help Martin overcome his sensitivities.

After that appointment I made the mistake (or not?) of getting on the phone with my older brother Rudy, who suffers from numerous allergies. Rudy said he’d been to a naturopath who used a similar metal-rod testing method, then later found out that “the whole thing was bunk.” The drops he was prescribed were too diluted to have any effect. Moreover, he’d read that the tests themselves don’t work, that you can be tested on different days and get totally different results. A waste of money, Rudy said. He even backed up his opinion by sending me a handful of links to people making the same complaints about this testing method.

In truth, I had not liked the naturopath. He had said dismissive things about other facets of Martin’s treatment—“You can’t starve out yeast from the gut. That’s just ridiculous to try”—and blown off the questions I raised about food sensitivities. He had talked down to me, which is hard for me to countenance. This general distaste for the naturopath combined with Rudy’s warnings and left me with a negative impression about the whole experience. I kept garlic and onions and eggs in my cooking. I never did start the prescribed drops with Martin. I was supposed to pull out Martin’s lower lip and let each drop sit on the lip for three seconds. For crying out loud, what three-year-old would let a parent do that?

The next time we visited the homotoxicologist I voiced these concerns and told her I hadn’t liked the recommended naturopath one bit. She said, however, that she believes in the testing method, and that if the first naturopath wasn’t a good fit, she could recommend another, one better at taking the time to address my concerns. I pondered. I did some more research on-line—here’s a good time to point out the unreliability of on-line research—and found some additional testimonials about the allergy testing method (it’s called the Orion® system, and I did not have an easy time finding information about it). Finally I fell back on my mantra: If I can’t find any evidence that a treatment will hurt Martin, I’ll give it a try.

And so Martin and I spent Saturday morning in the office of a second naturopath-allergist, Darin Ingels, ND. Indeed, Dr. Ingels was a better fit for me than the first allergist. He listened patiently to my concerns and did a lot of explaining. We clashed over the issue of vegetarianism (a subject for another post), but he seemed to respect my opinions. He said nice things about Martin. Most importantly, he also used the Orion® system, and the results came back exactly the same as the first allergist’s. (I did not mention that I’d seen another allergist previously.) This put to rest a lot of my Rudy-generated fears about inaccurate testing or different results from day to day. Finally, this allergist allowed that I could put the prescribed drops onto Martin’s wrists and rub them in. I can live with that.

Based on this second set of tests, I am admitting that maybe we do need to lose garlic, onion, tomatoes (were limited anyway), peppers, eggplant, nightshades, and eggs from Martin’s diet for six months or so, further narrowing his universe of allowable foods. Garlic and onion will be tough; they are mainstays of my cooking. But eggs will be worse still. Since adding eggs to Martin’s diet several months ago, I’ve become quite dependent on them for breakfasts and baking, and my mother uses them in her baking for Martin, too.

No problem, the allergist said. Try duck eggs, or quail. You can bake just as well with those, and they are a totally different protein than what Martin is sensitive to.

That was Saturday. Today is Wednesday. In between I’ve visited two Whole Foods Markets and two natural-foods stores, to no avail. I may have found the one item in desperately short supply in New York City: duck eggs. Next up, the farmers market. If I don’t find duck eggs (or quail!) there, I guess it’s on to . . .  an actual farm?

Before I blog much more, I want to make this clear: I know that I am very lucky in the time and resources I am able to devote to Martin. The stars have aligned for Martin’s recovery. I work at home, with hours that are mostly flexible, earning wages enough to cover private therapies and nanny expenses. Adrian’s work gives us excellent insurance (though not excellent enough to cover most autism treatments) and disposable income. More importantly still, Adrian is 100% on board with Martin’s regimen, a true partner. Martin is our only child. We live in New York City, up to our elbows in Whole Foods Markets and with a local natural-foods store on every second corner. My regular grocery is Fairway, which has an organic produce section the size of Jupiter’s largest moon. My mother is retired and happy to devote her time to baking Martin’s specialized muffins and cookies. Martin’s nanny is an early-childhood-education student who has thrown herself wholeheartedly into assisting with his recovery. When it comes to the support needed to move a child toward neurotypicality, I can’t imagine that anyone has it better than I do.
 
I think it may seem overwhelming, reading this blog about all-organic and homemade restricted diets, 3x/day supplementation routines, building a toxin-free home and kitchen, flying halfway across the country for doctor visits, RDI therapy, HANDLE therapy, Track One specialists, and so forth. In truth, it’s overwhelming to me. Even as I sit here writing this—it’s 12:34 a.m. Monday, laundry is strewn about our apartment in various states of dryness, and 8.5 hours from now I need to be driving Martin to Westchester for an appointment—I feel a little like I’m drowning in what did not get done this weekend.
 
I am not going to pretend that autism recovery is an easy process. To the contrary, what I want to acknowledge is that most parents have it far more difficult than I do, and that I do not consider the extent of recovery activities described in this blog realistic for every family. To everyone out there who is taking any action toward helping a child recover, I salute you. A special shout-out to single parents, parents without supportive partners, families with limited resources or inadequate healthcare, those who lack easy access to natural-food stores and organic grocers, non-English-speaking populations having trouble finding information in their language, the sleepless, the overworked, the stressed. I don’t know how you do it.
 
Autism is an epidemic. We’re in this together. Whatever action you can take toward recovery, no matter how small, is one battle in the war against this condition. Thank you for all that you do.

Yesterday we visited a new allergist, an N.D. with offices in Manhattan and Connecticut. He ran a battery of phenol profiles on Martin. When those were concluded, Adrian took Martin for a walk so I could chat with the doctor. At some point in that discussion, the doctor said this of Martin: “He really doesn’t strike me as a kid with Asperger’s.”

My heart leapt. This was a statement from a man who works extensively with children on the spectrum.

The doctor continued by remarking on Martin’s sustained eye contact, and the way Martin had laughed when I made a joke to entertain him during the phenol tests. (A stinky-feet-related bit of potty humor, but a joke nevertheless.) Humor, the doctor said, is a nuanced cognitive function, scarce in Asperger’s children.

I responded, “Thank you. This isn’t the same kid we had when that diagnosis was made. We’ve come so far already.”

My mind flew back to the days when Martin made almost no eye contact, when he spent his time wandering the perimeter of the room, running his hand along the walls. And I thought, We really have. We’ve come so far already.