A Foretaste of the Feast

Posted on by findingmykid
3

We flew home from Chicago last night. Martin was fantastic on the plane. His behavior trounced that of the other toddlers aboard.

When we got on Martin held my hand and marched down the narrow aisle. He kept his free hand almost completely to himself. He walked in a straight line. He climbed into his seat and occupied himself looking out the window.

Upon taxiing he allowed me to fasten his cookie belt. (That’s like a seatbelt in all respects, except that wearing it entitles one to treats, like almond-flour cookies or a pear.) He used to be terrified of take-off and need to climb on my lap and cling to me, with the windowshade lowered. We’ve slowly been easing out of that. This was the best yet; he clutched my arm and pulled it close to him but othewise remained upright in his seat and even commented on going up in the air and seeing clouds.

Around the time we were allowed to move about the cabin (thanking my lucky stars for that one) I could see that Martin was straining, so I took him to the miniscule airplane bathroom. I expected to find one of his usual horrid diapers—pardon the scatology on this one—and when I didn’t, I sat him down on the airplane potty, where he promptly deposited all poopies. He even flushed.

We returned to our seats, and I felt confident enough to leave Martin eating a pear while I chased down the drink cart and demanded a glass of wine. (You caught me! Mother’s little helper in action.) I enjoyed the wine. Martin finished his pear. It was late evening, and at some point Martin asked for John Paul—that’s his elephant-shaped clutch blanket; how it came to be called John Paul, I have forgot—and lay down with his head in my lap. He didn’t sleep but lounged prostrate, chatting about objects to be seen, or singing lightly to himself, until I sat him back up and buckled his cookie belt for landing. During the plane’s descent into Newark, Martin and I looked out the window and had this conversation:

Me: “I see a bridge.”
Martin: “It’s the Queensboro Bridge!”
Me: “Hmm. I don’t think so.”
Martin: “It’s the Triboro!”
Me: “I don’t know what it is, Martin. I think we’re somewhere over New Jersey.”
Martin, triumphantly: “It’s the New Jersey bridge!”

After landing we were stuck for some minutes on the tarmac. Although it was by then two-and-a-half hours past his bedtime, Martin waited patiently. We looked at FedEx planes and talked about Adrian and his brother meeting us in the airport. Finally, as the passengers streamed out, Martin tromped unassisted to the front of the plane, thanked the flight personnel (okay, that one required my prompting), and stepped carefully into the jetbridge. He topped off this performance by running, with my blessing and me right behind him, through the lonely airport and into his father’s arms. Heck, he even glanced behind him as he ran, to make sure I was still following. That’s a big deal. The biggest.

I know we’re not “there yet” in Martin’s recovery, or even close. For example, it’s after 10:00 p.m., and I’m writing this blog post on an iPad in Martin’s bedroom because he can’t settle enough to sleep. But episodes like yesterday’s flight feel like—borrowing from church terminology—a foretaste of the feast to come. They steel my resolve, these moments that transport me beyond the difficulties of these times, forward to a day when I will sit beside my child and observe and converse and enjoy this world as any two neurotypical persons might.

In fairness to Martin I will conclude this post by admitting that he was right. It was the Queensboro Bridge. We were flying SSE along the northern end of Manhatten into Newark, but the plane hadn’t turned enough for me to see the skyline and get my bearings. Score one for Martin.

Drum Roll, Please … The Diet!

Posted on by findingmykid
11

We’re still in Chicagoland. Martin is asleep in our hotel room, tended by his grandmother, and I’m in the hotel common area. I brought my laptop down here so as not to zap Martin with unnecessary EMF’s from the wireless internet and computer battery; EMF’s demand hyper-vigilance this week, owing to the LED treatment (which has gone swimmingly, as I will explain once we’re back on our home turf). With these few minutes of peace, I think I’ve found a good time to post what Martin’s diet looks like these days.

I’ll start by saying that I am vegan and have been for all of my adult life. (Don’t worry—I’m not judgmental. It just happens to be the choice that works for me.) Adrian is “pescatarian,” so he eats eggs, dairy, and fish. Martin, until this February, was vegan.

When we first radicalized Martin’s diet, he was entirely grain-free. No wheat, rice, buckwheat, quinoa (not technically a grain, but…), amaranth, millet, oats, anything. He also ate no soy or corn. No fruit except coconut, avocado, lemon, lime, and about one pear and one tomato per week. No starchy or sugary vegetables, so potatoes, sweet potatoes, carrots, peas, and the like were out. No casein (milk protein), so no milk, cheese, or yogurt. (That category was not a problem for a tiny vegan.) No legumes except lima beans, navy beans, and occasional lentils or split peas. No peanuts. No preservatives or refined sugars. No sweeteners except very limited green stevia extract, raw agave nectar (never heated above 118º), cooked and puréed pear, or coconut crystals. Everything must be organic, and nothing is canned.

I suspect that most families who embark on an autism-fighting diet rely heavily on meats, but that wasn’t an option for us. Martin’s was a diet based primarily upon pre-soaked nuts and pre-soaked seeds, dark greens, and oils. In the beginning I was having trouble finding enough protein for Martin, I wanted at least one more sweetener, and his excellent Track Two doctor wanted some dietary cholesterol. So Adrian and I made strategic decisions to add a few non-vegan products that I could get comfortable with:

>>> eggs (I found a farm I like in Trumansburg that supplies eggs to my favorite natural-foods store—Perelandra, over in Brooklyn—and Adrian really liked that I started cooking him weekend brunch eggs at home);

>>> ghee (clarified butter, which has the casein removed); and

>>> raw wildflower honey (either from the farmers’ market or the commercially available Really Raw brand).

We’ve had some changes over the past six months, both adding ingredients and taking away. The biggest change is that Martin now gets to eat limited gluten-free grains. This came about because Martin was showing some signs of ketosis, which is an issue often associated with low-carb diets. Martin’s doctor opined that ketosis was not a healing state for him. So now I serve Martin’s Indian-style dishes with brown basmati rice; he gets occasional gluten-free oatmeal-squash breakfasts; my mother makes him crackers with quinoa flour and other gluten-free grain flours; and I generally look for opportunities to slip about 1/4 cup of grain into him daily.

We also got to add in sweet potatoes, which are starchy but nutrient-rich. And just recently brown bananas entered the fray, as a sweetener for green smoothies and such.

But we’ve lost some foods, too, based on testing for phenol sensitivities. For at least the next few months, Martin will not be tasting any chicken eggs (we’re resorting to duck and quail eggs), garlic, onion, or nightshades (for example, eggplant, or peppers other than black pepper).

Cooking for Martin is a continual struggle, but by this point I don’t mind it as much, and my confidence has grown. It has helped a lot that my mother stepped in with baking and other assistance she can offer from her home. I also like to challenge myself (1) to make sure that Martin’s diet does not mean he does not get desirable and well-prepared meals; and (2) to try to come up with at least one new recipe per week to add to our ever-changing smorgasbord. I am extremely lucky that Martin has never been a picky eater. He’s as happy with a cumin-infused cashew-cream broccoli-spinach purée as many kids are with chicken nuggets and French fries.

I should also point out that I have consulted with two certified nutritionists to make sure that Martin is getting all the nutrition he needs, despite his dietary limitations. That was a comfort to me, especially during the early how-am-I-ever-going-to-make-this-work? days.

Microwaving Goodbye

Posted on by findingmykid
5

NPR, via Facebook, recently ran a question along the lines of, “I must have missed that day,” or something similar. The idea was for people to write in with some terribly obvious facts/ideas that they did not realize until adulthood. Thousands of people posted.

I’m going to add this obvious fact to my “I must have missed that day” pile: Apparently I should not be using the microwave around Martin, and certainly not for his food. Despite all I’ve learned, I managed to miss that, and I’ve been microwaving left and right, even microwaving the water to “cook” Martin’s homotoxicology drops.

My bad, again!

I still have a lot of environmental changes to make in our apartment, mostly having to do with electromagnetic fields. The cordless phones are already gone, and the flat-screen television and entertainment center are unplugged unless in use. But there are still the wireless router, the wireless printer, the 24/7 Blackberries, and, of course, the microwave.

I’m overwhelmed again. As usual.

What Are You in For?

Posted on by findingmykid
1

This week Adrian and I attended orientation at Martin’s new school. Martin is identified as a “preschooler with a disability,” so he has a placement through the Committee on Special Preschool Education (CPSE), which is a public program. The school itself, however, is largely privately funded, part of a national network serving learning-disabled people. It is a magnificent facility for three-to-five-year-olds, well staffed and boasting amenities like sensory gymnasiums and a music room. Adrian and I feel so grateful that Martin has been offered a spot there, starting September 7.

The parents at the orientation seemed, almost stereotypically, Manhattan-ish. Expensively dressed. Talking a lot and coming off as pushy, in a positive, I’m-going-to-bat-for-my-kid kind of way. I glanced around the room and saw dozens of couples who looked—how can I put this?—like Adrian and I.

But as soon as they started asking questions, it was evident that these parents are in a different situation than the playground moms I know from my neighborhood. “My son can’t chew. He can only swallow purées,” one parent said. “What measures do you have in place to prevent him from grabbing another child’s food as a choking hazard?” Another said, “My daughter is just learning to walk. Who will help her to the front of the bus?” Twice during the orientation I felt myself near tears. Maybe the cause was despair that Martin is classified with such children. Or relief that his condition is mild by comparison. Or being confronted by the reality that no matter how much we polish our image, imperfection finds us. I’m still not sure.

Afterward, Adrian and I walked to a nearby diner. I recognized another couple who had been at the orientation, now seated at a booth across from ours. They recognized us, likewise, so we introduced ourselves and said our son, Martin, would be starting this fall as a three-year-old. Their son, too! they said. His name is Warren, and they are happy to have found such a wonderful program for him.

With that information out, we all stopped talking and smiled at each other.

I wanted to ask, What’s wrong with Warren? What are you in for? I didn’t, of course.

Warren’s dad broke the silence with a joke about needing pancakes to decompress from all the information we’d received at orientation. We laughed and returned to our own booth.

I don’t yet know the social code of this realm we have entered, don’t know what I can and cannot ask, what details are mine to gather or which of Martin’s secrets are mine to give. In fact, other than over the internet or by phone, I know almost no one whose child is disabled (learning or otherwise). I may be avoiding too much.

Laser Energetic Detox

Posted on by findingmykid
5

Martin and I are in a hotel outside Chicago. We flew here, only slightly delayed by an angry, lingering rain at LaGuardia. Tomorrow afternoon we begin two days of laser energetic detoxification (LED) treatments, which involve applying customized vibrations to help pathogens exit through Martin’s meridians—something like a souped-up, high-tech version of his cranio-sacral therapy. Adrian had to be elsewhere for business, so my mother has flown in from the Southwest for support. The LED procedure sounds more “out there” than Adrian and I are used to, so we’ve been researching on-line and discussing with each other. We’ve found relatively little evidence of potential side effects, so it’s a go. I will post later this week about what happens.

Adrian said, “We’re doing all this work to detox. How do we know he won’t, you know, ‘re-tox’?” I need to do make more inquiries so that I can answer his question.

Meanwhile, Martin is a little off, still. His language is strong, and his behavior is good, with no trouble transitioning and only mini-tantrums that fade fast. But his attention span is zero, his eye contact is sporadic, and he’s engaging in more self-stimming. Understandable, I suppose. We’ve just put a weighty week behind us, with the allergist, new HANDLE exercises, a visit to Martin’s homotoxicologist, a party marking the last day at his old school, and a housewarming for friends in Westchester. And then I hauled him onto an airplane to Chicago.

Martin’s getting better is a lot of work for me and Adrian. It’s easy to forget that it’s a lot of work for Martin, too.

Recovery Recipe: Zucchini Seed Fries

Posted on by findingmykid
1

When Martin eats egg for breakfast (this morning: duck egg cooked with broccoli sprouts in hemp oil, sheesh), he likes to have “French fries,” too. Martin cannot eat white or red potatoes, and his sweet potato intake is limited. So his French fries are usually butternut or acorn squash, cut into fry shapes, misted with olive oil and sprinkled with salt or seaweed flakes, and baked at 450°.

This morning I had no winter squash. I improvised. The result was a big hit with both Martin and Adrian. Henceforth these will be known in our home as “zucchini seed fries.”

½ of a large zucchini, peeled and cut into “French fry” shapes about 1/8” thick
sunflower (or another) oil
sunflour
sea salt

Place the zucchini fries in a bowl and drizzle them with oil until they are more or less coated, stirring as necessary. Put a small amount of sunflour into a shallow dish. Use one hand to pull a fry from the oil, shake off any excess oil, and transfer to the other hand to coat in sunflour from the shallow dish. (This helps to prevent the sunflour from getting too caked with oil, although I still needed to change it midway for a fresh dish.) Place on a baking sheet and salt to taste. (No need to oil the sheet.) Bake at 400° until browned and sizzling.

The resulting fries have a pleasant nutty flavor and are quite substantial. Note that they tend to break easily and so are better eaten with a fork than as a finger food.

Martin’s Dejection

Posted on by findingmykid
1

This post is titled “Martin’s Dejection.” It’s more about my elation.

Martin has been going through a biting phase. He has a mild oral fixation; he also grinds his teeth and thrusts his lower jaw forward. In the case of biting, if he finds himself with his mouth open and pressed against flesh, such as when I’ve picked him up and his head is on my shoulder, he exercises the oral fixation by tightening his jaws against what is conveniently before him—flesh. It’s more a crime of opportunity than malicious, or even particularly intentional, biting. Nevertheless, Adrian and I are keen to put a stop to the behavior, ASAP.

When he bites, typically I kneel, stand him before me, hold his face firmly, and say, “No biting. We never bite. Never.” Then I make him repeat, “No biting,” several times, apologize to me, and hug. This method has not been particularly effective, but I’ve been at a loss as to what else to do. The primary problem is that Martin is not yet good at reading faces, or judging the seriousness of a situation, so his reaction is to laugh, to cry from distress, or to look away and exit the situation by doing something cute. (Our RDI therapy is aimed, in part, at helping Martin read faces better.)

This evening I was getting Martin ready for his bath. As I completed one HANDLE exercise, Martin ended up with his face against my neck, and he bit. He was sitting on a changing table, at my eye level, so I left him there and started my usual admonition.

After a few seconds, Adrian emerged from the bathroom, where he’d been preparing the bathtub. He brushed me aside, seized both of Martin’s wrists, lowered his voice and spoke very slowly, enunciating in a manner I’d never heard before: “Martin, look at me. You cannot bite Mommy. You cannot bite anyone.” Martin tried to smile and wiggle away, but Adrian stood his ground, holding Martin’s wrists. I remained behind Adrian, looking over his shoulder, with my arms crossed and wearing the most serious expression I have.

Martin looked from Adrian to me and back again. After several seconds he lost his smile. He stopped trying to free his wrists from Adrian’s grasp. Finally, a pure, unaffected look of dejection crossed his face. He didn’t cry, as he does instinctually against being restrained.  Nor did he protest. It was a new look for Martin. In that moment, it appears, Martin understood that he’d done wrong, and he felt bad about it. He seems to have experienced an emotion something like guilt, or sadness.

The moment passed. Martin said quietly, “Sorry, Mommy,” and allowed Adrian to take him to the bath.

His dejection was my elation. We may have turned another corner.

Shortcomings

Posted on by findingmykid
1

Shortcomings. I have them.

Martin and I are headed to Chicago on Sunday. We have a Monday morning appointment to see his excellent Track Two doctor. This afternoon the doctor’s nurse called and said that they are missing blood results, some testing we were supposed to have done. I remembered that I never had the testing done. The prescription form was attached to paperwork that I turned over to Adrian to seek insurance reimbursement. By the time I went looking for it, the prescription had disappeared. And then the whole thing slipped my mind. I suppose I thought maybe the doctor would … forget that she prescribed this blood work for Martin? Of course, she didn’t.

The Big Imposing Hospital sent me a notice recently, too, inquiring about the blood testing the geneticist wanted. I don’t feel so guilty about that one; the geneticist said there was little chance that we would learn anything from blood work. Still, I should have had it done. I could have had LabCorp draw the blood at the same time as the blood for the Track Two doctor. My bad.

And then there’s the lipase. It’s been in Martin’s supplementation/medication schedule since our last visit to his Track Two doctor ten weeks ago. I was supposed to start giving it to him two weeks after that visit. (We “ramp up” to new supplements.) I waited the entire two weeks before I went looking for a compounding pharmacy that could fill the prescription. I had no idea how to find a compounding pharmacy, and by the time I finally woke up and asked Kathleen Reily for the name of one, the lipase prescription too was gone. Poof! Someday perhaps I’ll find it behind a heat register or under a cabinet in my home office.

So much gets done. I’ve promised not to beat myself up for what doesn’t.

HANDLE this!

Posted on by findingmykid
Reply

Martin has been a little off this week. Not in the same way as last week—his attention span is back up (thank goodness). Instead, he lacks coordination and balance, he’s restless at bedtime, and he’s had a couple difficult nights. (We used to have terrible troubles with Martin’s sleeping, which were misdiagnosed by the experts at the Big Imposing Hospital as Restless Leg Syndrome, or RLS; Martin’s sleeping was more or less the first thing that improved when we started treating his autism biomedically.) I attribute this week’s symptoms to the fact that, on Monday, we visited his HANDLE therapist, Katie Penque.

Of the various therapies in which Martin participates—RDI, PT, OT, speech therapy—HANDLE therapy has proved to be surprisingly powerful. Counter-intuitively so, even, as it relies on simple and gentle “organized movement activities,” like tilting Martin slowly backward and forward, or tapping my fingers across his skull in a particular pattern. The therapy is designed to help Martin gain better control over his physical self, his movements, his actions.

We noticed immediately after we began HANDLE therapy, three months ago, that Martin had a series of restless nights and seemed a little discombobulated during the day. Katie advised us to reduce the HANDLE exercises, then work back to full capacity. We did so. Even so, I sometimes have to skip a particular exercise because Martin seems to resist it. (In HANDLE language, this is called a “state change.”) But more or less, we got the hang of it and proceeded accordingly.

Now we see restless nights after a visit like Monday, when Katie evaluates his progress and recommends new, more advanced exercises. This week we added “hoop elevator,” in which Martin stands still whilst I slowly lower a hoop around him, from his head to the floor and back up again. We also added “joint tapping,” which is about what it sounds like, i.e., me tapping Martin in a bouncy motion at various joints. Doesn’t seem like much, right? But even Katie doing the exercises with him on Monday, to show me how, set Martin on a course of nighttime restlessness and diminished coordination. It was Thursday before I could complete any HANDLE exercises at home without him resisting.

As Adrian and I see it, the HANDLE therapy is as successful with Martin as it is occasionally overwhelming. Martin truly is more in control of himself. He remains still for longer, and many of his movements have lost the clumsy jerkiness sometimes associated with ASD. The improvements are evident even when he sleeps. Martin used to circulate the bed during the night. Head at the top of the bed. Head at the foot of the bed. Head hanging off the side of the bed. Feet up the wall. Blankets on the floor. He continues to toss and turn, like any toddler, but for the most part he has become able to keep his head on the pillow, and a light blanket approximately over his body, from sleepy-time till morning.

It’s Friday night, and he has evened out since Monday. This weekend I will introduce the more advanced HANDLE exercises and see where they take us. I enjoy that Martin no longer attracts curious glimpses from passers-by, who look as if they can’t put their finger on why he appears different from other kids. Day by day, he looks more and more like the others at the playground.

Recovery Recipe: Veggie Pancakes

Posted on by findingmykid
Reply

This morning Martin had his favorite grain-free pancakes, made with duck eggs instead of chicken eggs. He did not seem to notice any difference. Samara tried the pancakes and said they were as tasty as always but that she was having trouble getting past the idea of eating duck eggs. Whatever eggs you use, these pancakes are protein-packed and deliver a hefty serving of vegetables, too. In terms of the vegetables, this morning I pureed a yellow summer squash. I have also made these pancakes with butternut squash, acorn squash, and cauliflower; I find that with those more wintery vegetables, it helps to dice and steam them before pureeing. No steaming is necessary with a tender vegetable like summer squash. This recipe is adapted from one I saw on Pecan Bread.

1 cup pureed vegetables
3 chicken eggs or 2 duck eggs
1 tsp cinnamon
1 tsp vanilla
coconut or macademia oil

Mix all ingredients other than the oil well. If you are using a food processor, put the eggs in last and don’t let them get too foamy. (Usually I puree the vegetables in the food processor but whisk the eggs by hand and then mix everything together by hand.) Heat the oil in a large skillet and pour in batter a few tablespoons at a time. Cook until the pancakes until they are firm on the bottom, then flip them and cook for another minute or two. They come up oily, so I usually drain them on a paper bag before serving. As a bonus, especially when cooked in coconut oil, these pancakes leave a delightful sweet smell lingering for hours in my kitchen.