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.

If I have my office work under control, I use the evening hours after Martin goes to bed to do the “support” work necessary to maintain his special diet. I don’t mind this time. I switch on the little 9″ television in my kitchen (more or less the only time television plays at home; the huge flat-screen in our living room sits unused except during major sporting events) and find some comfort in the steady predictability of the chores. What I do on a given night might involve any of the following:

· Washing and juicing organic lemons, then cleaning their rinds and placing them in the dehydrator, or removing rinds from the dehydrator and grinding them into lemon peel for spice.

· Juicing butternut squash for any recipes in the week that require juice, then setting the leftover pulp to dry in the dehydrator, or grinding that dried pulp into fiber-rich powder to thicken stews.

· Setting to soak ingredients (such as beans) that are necessary for the next day’s cooking, or in the case of ingredients (such as nuts or seeds) that must be soaked and then dehydrated, beginning the process two days before cooking.

· Using the Vitamix to make “milk” from pre-soaked nuts and filtered water, straining the end-product through a nut milk bag, then dehydrating the pulp left in the bag, or grinding dehydrated pulp into nut flour to use for baked goods.

· Trimming, cleaning, and packing any bunched fresh herbs that I did not get to when I brought them home over the weekend.

· Double-filtering tap water (through our under-counter AquaSana system, followed by our countertop Berkey system) to ensure the removal of any contaminants to which Martin might be sensitive.

· Prepping ingredients for the next morning’s breakfast, such as steaming and pureeing vegetables for pancakes (yes, it’s an unusual recipe) or slicing squash into “French fry” shapes to be sprayed with seasoned oil and baked.

· Oiling my wooden cooking utensils (I’ve thrown out almost everything plastic) and setting them to condition overnight.

· Seasoning and conditioning cast iron cookware.

A lot of these tasks get kicked from night to night. I work until it seems late enough, then give the kitchen a final cleaning.

With no special appointments on calendar, and when work is not crazy (discussed below), this is how I organize a typical weekday right now:

7:15-7:45 a.m. I rise when Martin opens the door to my and Adrian’s bedroom and calls, “Mommy!” There is some flexibility in this timing; this morning, for instance, Martin surprised us at 5:45 a.m. and refused to go back to sleep. (Thanks, kiddo!) In the event that I wake while Martin is still asleep, I use the time to get a jump on feeding the cats, preparing breakfast, or getting myself washed and dressed.

7:45-8:45 a.m. A busy time. I turn Martin over to Adrian, who gets him freshened up and dressed. While they’re doing that, I prepare Martin’s morning homotoxicology (heat filtered water and “cook” the alcohol out of his drops) and feed our four cats. (Because nothing in life can be easy, two of the cats are on restricted diets, and each eats something different. They require close supervision so as not to get into each other’s food.) When Adrian and Martin come downstairs, I add citrus-flavored kombucha to the homotoxicology drops and help Martin drink that mixture, along with three nepro rella tablets. Then Adrian and Martin have their half-hour RDI session together. I participate as necessary, or video parts of their session to send to our RDI coordinator, or else use the time to prepare Martin’s breakfast. (To my dismay, Adrian refuses to eat breakfast.) If I’m lucky, I dash upstairs to wash up and get dressed.

8:45-9:15 a.m. Martin is usually back in my control by about 8:40 a.m., when Adrian goes up to shower and prepare for work. I help Martin with his breakfast, and we do his morning supplement routine, which is the most extensive of the day, with half-a-dozen pills, two kinds of oil, four varieties of drops, vitamin E that I empty from capsules into oil, and diluted Biosode. Martin’s nanny, Samara, arrives around 9:00 a.m. She’s well versed in his entire supplementation/homotoxicology routine and helps us finish that and any breakfast still left on his plate. Adrian breezes through on his way to the office. I turn Martin over to Samara; between 9:15 and 9:30 a.m. they leave for the park or a playdate.

9:15-10:00 a.m. Typically I need a half-hour, or more, once the apartment has settled down, to tidy the kitchen, to take care of dishes left in the dishwasher or laundry run through the dryer overnight, and to finish getting myself ready for the day.

10:00 a.m.-12:00 p.m. Work. Often these two hours involve a lot of returning emails and catching up on what’s come in overnight, because I work with people who work a lot.

12:00-12:30 p.m. Martin and Samara return for lunch. I spend a few minutes playing with him. Then I prepare his lunch, usually leftovers from whatever entrée I cooked the previous afternoon, plus an improvised side dish like sauerkraut-and-parsley or avocado-and-cilantro. I also assemble a snack for Martin to take to school. Samara takes care of Martin’s noontime supplements. I give the cats their lunch.

12:30-4:30 p.m. I try to devote as much of this time as possible to work, and also for any necessary conference or other business calls. Samara takes Martin to his special-education school by 1:00 p.m., so I have a few good hours of quiet. Inevitably, though, non-work tasks begin to crowd the afternoon—the supermarket didn’t have some specialty item, so I have to run to the natural-foods store, or we urgently need cat food until the next scheduled delivery arrives, or I forgot food for myself and step out to grab a smoothie. Because I work at home, I can also use this time for prepping dinner ingredients that require more time, like cooking beans or dicing and steaming vegetables. I’m an afternoon sous-chef / lawyer.

4:30-5:00 p.m. Samara brings Martin home from school and does his afternoon homotoxicology (as in the morning, “cooking” drops in filtered water and serving mixed with kombucha) and three nepro rella tablets. Martin’s afternoon home-based therapist (OT or PT) arrives for a half-hour session. I rush to cram in anything that needs to be finished for work before Samara leaves at 5:00 p.m.

5:00-7:00 p.m. The busiest time of my day. During this two-hour stretch I finish preparing Martin’s dinner, do his 13 daily HANDLE exercises, bathe him and rub oil on his skin, and help him eat while giving him four or five pills, one oil with three types of drops in it, and antioxidant cream rubbed into his neck. I also dim the lights and try to create a calm atmosphere, to get him settled for bed. This also tends to be Martin’s most difficult time of day, because he’s overtired and not willing to obey or even to pay attention. He tries to rile me by running into my home office, where he knows he’s not allowed to play, or by climbing the carpeted cat-tree. I get frustrated.

7:00-8:00 p.m. Between 7:00 and 7:15 p.m. I take Martin up to bed. We read a book or two. Actually, because his attention is limited, we do more looking at pictures and talking while he turns pages. I brush his teeth. We snuggle. Finally I sit in the chair next to his bed and read, check Facebook, or catch up on headlines on the iPad while Martin dozes off. If we’ve had a bad night or two, I may fall asleep in the chair and wake half an hour later to find Martin also asleep. Adrian, on nights when he does Martin’s bedtime, is much better at telling Martin that it’s sleepy-time and leaving the room. That’s difficult for me. Martin likes to have someone in the room when he falls asleep, and I like that he closes the day with the security of Mommy next to his bed.

8:00-10:30 p.m. Once Martin is asleep, I return any emails and make any evening phone calls necessary for work. Then I begin the kitchen routine. Adrian tends to arrive home from work around 8:30 or 9:00 p.m. Depending on whether he has eaten at the office, I make him either a snack or a meal, such as garbage pasta. After Adrian is taken care of, I engage in the support necessary to maintain Martin’s exhausting low-carb, sugar-free, preservative-free, all-homemade organic diet. Finally I clean the kitchen and set the dishwasher to run overnight.

These couple of hours used to be a lot more difficult for me, when I also had to bake for Martin. (With the exception of one commercially available raw cracker, every cracker, cookie, muffin, or bread that passes his lips is homemade. Most are grain-free.) In recent months, my mother, who is retired and has more time, has taken over baking for Martin. She has his dietary restrictions memorized and is quite creative. She prepares his baked goods at her home more than 1,000 miles from us, freezes them, and overnight ships them to us. As a result, I am less stressed when 10:30 or 10:45 p.m. arrives.

10:30 p.m.-midnight. Wind-down. I feed the cats, maybe trim their nails or brush their coats. I straighten Martin’s play area, get the house in order, return personal phone calls and emails (I have very understanding friends and family). I file the paperwork that accumulates for Martin: applications, school evaluations, insurance claims, blood test results, referrals. I try to be in bed before 11:30 p.m. but rarely succeed. When I get there, I read or play Scrabble on the iPad. I try not to think about autism. I fall asleep by half-past-midnight, or so.

This schedule assumes (1) that we have not had any appointments for Martin during the day, and (2) that my work is not going crazy. One or two mornings a week I end up taking Martin to an appointment, such as his craniosacral therapist in Westchester, or his homotoxicologist in Midtown, or some Track One affair at the Big Imposing Hospital. And if my work is going crazy—if a brief is due, or a hearing is going forward, or things have just piled up—I have to sacrifice the evening kitchen hours, and most of my sleep. I recently went an entire week on less than 20 hours’ sleep, working during the day, then from 8:00 p.m. until 2:00 or 3:00 a.m., and getting up at 6:00 a.m. to get in an hour before Martin woke. It was the worst! My ability to cope with that kind of schedule has gone way down since law school 15 years ago.

Weekends are a little different. We try to have family time at the park, or maybe on a day-trip. Otherwise I do the laundry, construct Martin’s menu for the week, grocery shop, and try to get ahead of the week’s cooking. I may have some work to do. Adrian may have some work to do. We may both have some work to do, in which case we tag-team Martin’s therapy and care. Adrian and I also schedule one date night per week, either alone or with another couple. I cook for Martin in advance, and a sitter whom he loves comes to give him dinner and put him to bed.

My task at this point is to figure out where blogging is going to fit into the schedule. If I have to, I will cut the midnight-1:00 a.m. sleeping hour. This blog is important to me, as I hope it will be helpful to others.