Call It What You Will, New York State. A Rose by Any Other Name Is Still Autism

Posted on by findingmykid
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Martin’s autism was diagnosed by the Big Imposing Hospital, and not by the State of New York during his Early Intervention intake.

For the EI intake, Martin was visited by a speech therapist, an occupational therapist, and a child psychologist. (A physical therapist came and evaluated him later.) The psychologist, who reviewed the speech and OT reports and ultimately made the determination that Martin was eligible for services, told me, “It’s autism. You might call it ‘high-functioning autism,’ or, ‘Asperger’s syndrome’.”

Several months later, when I brought Martin to the Big Imposing Hospital’s special department for developmental issues, I told the doctors, “Martin has autism.” The doctors conducted an extensive several-hours-long interview with me, ran Martin through a battery of tests over several visits, collected surveys from Samara and Martin’s classroom teacher, and finally met with me and Adrian together, whereupon they confirmed to us that Martin has autism.

They said they were surprised that the State had provided an autism diagnosis, however. The autism diagnosis was not usually given to a child so young.

I didn’t think much about that comment until one day when I was having a casual conversation with one of Martin’s EI therapists. The therapist—I’ll call her Anna—bemoaned the fact that, under state guidelines, children younger than age five cannot be labeled autistic.

Really? I went and found Martin’s original EI reports, including the comprehensive evaluation from the psychologist. I had never perused the documents thoroughly; I know I should have checked them, but at the time it was just too painful to read page after page describing Martin’s inabilities.

Sure enough, the official diagnosis of the psychologist—who had told me, “It’s autism”—was not autism, but “pervasive developmental delay,” or PDD. I showed the diagnosis to Anna and asked her why she thought it was problematic not to say “autism.”

It’s problematic, Anna opined, because she works with non-verbal, self-stimming, clearly autistic children whose parents say, “We’re not worried. It’s just developmental delay. He’ll catch up.” And she can’t say, “It’s not just a delay. It’s autism. And he probably won’t catch up.”

I understand the state’s policy (and will admit that I am laboring under utter hearsay, having undertaken no investigation to determine whether “no autism before five” in fact represents official policy). “Autism” is a nightmare of a word. More than one of my close friends gasped audibly the first time they heard me apply it to Martin. The Department of Health must not want therapists silly-stringing scary autism vibes over families, especially when an autism diagnosis itself doesn’t always stick.

On the other hand, let’s consider whether this policy doesn’t throw yet another hurdle into the path of recovery. Treating autism, whether biomedically or through traditional behavioral therapy, is ridiculously hard. I know it’s a heckuva lot more than I thought I was signing up for when Adrian and I decided to become parents. You can bet that I would not be spending most of my waking hours on Martin’s recovery regimen if I didn’t somehow feel that the effort is absolutely necessary.

Almost a year ago, when Adrian and I first noticed that somethng about Martin made him different from other kids, I phoned an old friend who works with children in EI. (I’ll tell that story in a later post.) My friend came and spent a day with me and Martin, asking questions and observing him at the playground, at home, and in a class for two-year-olds. That same day, in the afternoon, my friend said, “I know this isn’t easy to hear, but based on what I’ve seen, Martin has autism.”

She said that as a friend, not as an EI pracitioner or a state employee. And it wasn’t easy to hear. Still, I will be forever grateful to my friend for putting the word autism into my head, immediately and up front. I’m not as proactive as I must seem from these blog posts. Not nearly so—for example, ask Adrian about my housekeeping skills, or whether I’m on time for anything, ever. If I’d had ample wiggle room to convince myself that Martin had some issue other than autism, I would’ve done so. I would have been one of those parents saying that he’ll catch up, and letting myself be content with the ample behavioral therapy offered by the state. But I didn’t have wiggle room. The big A was staring me down, right from the get-go. Proactive or not, I don’t get pushed around, and no way was I going to let the big A mess with my kid.

What I worry is that when we don’t call a spade a spade, we let parents off the hook, which doesn’t benefit anyone in the years to come.

ASD Recovery Recipe: Zucchini Mini-Muffins (Have Grains)

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This is my mother’s recipe for zucchini mini-muffins. (They don’t taste like zucchini. For some reason, my mother bakes a lot with zucchini. Her glazed carob-zucchini cake is legendary.) These are gluten-, soy-, and casein-free, but they are a newer development for Martin; he was previously grain-free entirely. My mother is making them now with duck eggs. Martin gobbles these muffins.

3 cups grated zucchini
3 eggs, beaten
2 cups almond flour
1 cup quinoa flour
1/3 cup ghee
1/2 cup sweetener (honey, agave, coconut crystals)
2 tsp cinnamon
1 tsp baking soda
1/2 tsp sea salt

Combine all ingredients and pour into oiled muffin or mini-muffin pan. Bake at 350º until a toothpick inserted into the center of one comes out clean.

He Does a Lot. It Just Doesn’t Require Doing Much

Posted on by findingmykid
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We’re New Yorkers.

Before we radicalized Martin’s treatment, we also acted like New Yorkers. Saturday mornings Adrian took Martin to the playground while I went to the gym—Adrian called it the “Daddy Hour,” because the playground teemed with fathers and their toddlers, while the respective mommies slept in or aerobicized—and then we met for brunch at a favorite organic restaurant.  Saturday afternoons we took an early dinner wherever we happened to be in the City, and usually at a pub. Sunday mornings we ate brunch at Middle Eastern joint near my church. Sunday evenings we ate family dinner at a popular Italian restaurant in our neighborhood. If Adrian could leave the office before 6:00 p.m. on a weekday, Martin and I picked him up and we went for snacks.

We took frequent weekend trips, often spur-of-the-moment, to the Island, upstate, the Jersey shore, Cape Cod.

The New York lifestyle ended when we decided to fight ASD biomedically and through diet. We almost never eat out as a family anymore. It’s not so much that we mind having to bring Martin’s food with us. Instead, it seems unfair. Martin has to sit at the table and watch us eat foods he can’t have.

Saturday mornings are not playground time anymore. They’re reserved for Adrian and Martin’s RDI exercises while I cook a large breakfast, trying to compensate for the loss of brunch. Sunday mornings Martin and I eat at home. Adrian drops us at church and escapes to the Middle Eastern joint, now with the company only of a book.

Weekend trips have dwindled. They take days of planning. Cooking and filling a cooler with heat-and-eat meals. Dividing and packing the correct oils, additives, powders, and supplements, some of which must be kept refrigerated. When we do leave town, we can’t stay anyplace without at least a kitchenette, so we end up visiting private homes or finding “suite”-type hotels. We love cruises, but those are out for a while. This summer we found an alternative vacation and rented a house in Maine.

A couple days ago a friend asked me whether I shoulder alone most of Martin’s treatment regimen, or whether Adrian helps.

I responded immediately and confidently that Adrian helps, a great deal.

But other than the RDI exercises, I couldn’t explain how.

I have the answer now: Adrian has, without complaint, accepted the wholesale abandonment of our former lifestyle. That takes a lot—to change what you enjoy, to create new models of together-time, to become a different kind of family. And he had to do it within months of learning that his only child has autism, and adjusting his expectations accordingly.

So Adrian helps by not resisting.

Am I giving him a pass? Maybe a little. But he’s the one who works full-time. More than full-time. It also bears mentioning that, from what I’ve seen and heard, the No. 1 impediment to many a mother treating her child’s ASD is an uncooperative father.

Sorry, dads out there. I know you are wonderful! It’s just that some of you are still learning to believe in recovery. I’m lucky that Adrian already does.

Autism Recovery Is Impossible. Like, Everything About It Is Impossible

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So garlic and onion are gone from Martin’s diet, along with all tomato, peppers, eggplant, nightshades in general, and (hen) eggs. At least for the time being.

You may remember that a couple weeks ago Martin visited a (second) naturopath/allergist, who deemed Martin sensitive to phenols in those foods. He recommended that they go away for about six months, while we treat the sensitivities.

Well, that’s impossible, I thought at the time. We’re so restricted already, and my taste strategy consists of 90% garlic, 8% onion, and 2% whatever else winds up in the mixing bowl. No way I can lose garlic and onion.

This afternoon, as I modified a vegetable chowder recipe to make it garlic-free, I realized that what I melodramatically deem impossible seldom is. In a very short time, cooking without garlic and onion has become second nature. I’ve found ways to substitute. For onion, I try to consider the overall composition of the dish, what flavor I’m shooting for—fortunately, I have rather imprecise aim—and whether celery might not work, or the sharper celeriac, or another root vegetable like a turnip or a parsnip. And while I do miss my trusty sidekick garlic, its absence has prompted me to experiment more with my spice rack’s eager understudies like white pepper (doesn’t fall under the pepper prohibition) and fenugreek. Yes, my recipes taste different. But no, they do not suck. Or at least not enough that Martin has noticed.

I intimated in an earlier post that every step of this process began as impossible. Long before we radicalized Martin’s diet, before we even came to understand that recovery is possible, Adrian and I heard about mainstream medicine’s lone concession to diet’s effect on autism: that a gluten-free diet, for reasons allegedly unknown, may benefit some persons on the spectrum. Back then, I thought going gluten-free would be so difficult, so monumtenally life-changing, that I would at best give it a try for a month, then abandon the effort if I saw insufficient results.

Then we radicalized, and our consultant Kathleen was explaining to me that we’re not talking just gluten-free. We need to be thinking grain-free (impossible). Corn-free (impossible). Soy-free (we’re vegetarians; we love soy). Nearly fruit-free. Starchy vegetable-free. You get the picture.

Back then, my heart sank as Kathleen spoke. I trembled at the thought of what might go next.

Yet here we are. Pancakes without flour or eggs? Give me some cauliflower, spices, and duck eggs. I’ll get it done. Hummus without garbanzos or garlic? I’m on it.

We’re facing new challenges these days, as I delve deeper into what it takes to make our home safe for a child living on the spectrm with its attendant sensitivities. Commercially available household cleaners, other than crunchy-granola natual stuff, went first. The wireless phones are gone; I actually have to sit down at a desk when I want to talk. Blackberries are off, when possible. Tap water is fltered twice before it passes Martin’s lips. No fluoride toothpaste. No plastic utensils or storage containers in the kitchen. No microwave. No aluminum foil.

But we still have a wireless internet router, and a wireless printer/scanner/fax. I haven’t yet had the apartment tested for electromagnetic fields. And we live in New York City. Even setting aside the omnipresent aroma of car exhaust and doubtless gazillons of satellite waves beaming through our home, we have construction, and construction dust, on three sides of us right now.

It’s all impossible.

ASD Recovery Recipe: Sweet Potato Cakes

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In yesterday’s post about Martin’s menu, I referred to Indian-spiced sweet-potato-and-yellow-split-pea cakes with fresh cilantro. These are pretty good, so I thought I’d post the recipe. In the event that your child is not up to sweet potatoes yet because of the carbs, winter squash makes a good substitute. This recipe is very heavily adapted from one for potato cakes that I found in a little “In a Nutshell” volume called Indian Vegetarian Cooking: A Step-by-Step Guide. I find that it makes sense to soak the split peas overnight, and then to set them to cook around lunchtime for that evening’s dinner. You can also cook the sweet potatoes in advance. Another option is to make the whole recipe in advance, right up to forming the patties. Then refrigerate them and dip and egg and cook when ready. I also cook a few without the egg for myself, as I don’t eat egg.

1 cup pre-soaked yellow split peas
2.5 cups filtered water
2 tsps oil (I prefer coconut with this recipe)
oil or ghee for frying
5 fenugreek seeds
1 onion or 4 stalks celery, finely minced
1 tbsp seeded and finely minced green chilis (I leave these out right now)
pinch of ginger powder
minced fresh cilantro (I pile it on, like half a cup)
2.5 cups mashed sweet potato
1 egg, beaten (duck egg works fine)

Cook the split peas thoroughly and allow them to cool. Heat the oil and cook the fenugreek seeds for a few seconds, until they become fragrant. Add the onion or celery and fry until it softens and begins to brown. In a bowl mix together the split peas, oil with seeds and onion/celery, and all other ingredients except egg and cooking oil or ghee. Form this mixture into flat patties. Dip each patty in the beaten egg and immediately fry in hot oil or ghee, until brown on each side. I usually drain them on brown paper bags, but that’s not completely necessary.

Serving Up Recovery: An ASD Menu

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Recently I posted the details of Martin’s diet. This, accordingly, is an appropriate time to answer the question, “So what exactly does he eat in a given day?” I will do so by use of an exemplar—say, yesterday. Here is what Martin ate yesterday:

Breakfast—Two duck eggs, cooked with minced fresh dill in macademia oil; squash “French fries” misted with olive oil and sprinkled with dried seaweed granules.

Lunch—Edward & Sons plain unsalted rice crackers; avocado mashed with fresh lemon thyme.

Snacks—One nut-butter (grain-free) muffin; four basic cookies; four coconut haystack treats.

Dinner—Indian-spiced sweet-potato-and-yellow-split-pea cakes with fresh cilantro; sauerkraut minced with broccoli sprouts.

Yesterday was unusual insofar as lunch was improvised, instead of leftover entree from the evening before. That was because a grocery-shopping mishap on Friday (i.e., I failed to go grocery shopping until after Martin was in bed) resulted in an improvised dinner of zucchini, acorn squash, and broccoli sauteed with a scoop of cashew butter for protein. The amount I cooked was small, limited by what was lingering in the fridge pre-grocery shopping, and Martin ate it all. None left for lunch the next day.

Yesterday was also unusual in the sugary (well, honey-y) nature of Martin’s snacks. Generally speaking, I would consider four cookies, four haystacks, and a muffin too much sweetener/honey for one day. But Martin had a birthday party to attend. He can’t eat pizza and ice cream with the other kids, so I packed enough for him to live it up on the terms we have.

In my daily log book for Martin, I keep a record of everything he ate, alongside his HANDLE exercises, a supplements/oils checklist, how he slept the night before, and notes on his demeanor, diapers, and symptom level for the day. Too much? Possibly, but I do find the information handy from day-to-day.

Breaking Dawn, or ASD Detox Drunkenness

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I’m on the iPad again. I’ve been exhausted since our trip to Chicago and was trying hard for a good night’s sleep tonight, but it was not meant to be. It’s just after 5:00 a.m. I’ve been in Martin’s room since 2:15.

Martin is detoxing. In the big picture, that’s a grand thing. In the middle of the night, it’s darn easy to lose the forest for the trees, the trees being sleep deprivation and annoyance. When Martin is detoxing, as I understand the process, pathogens—or yeast overgrowth, or viruses, or whatever we’re fighting at the moment—are dying off within him, and the little buggers don’t go without a fight. They flare up, causing mayhem in Martin’s system.

The result is that my three-year-old gets something like drunk. He thrashes around in his bed. He cries randomly. His sleep quality suffers. And he exhibits symptom that has freaked out me and Adrian ever since we first encountered it with yeast die-off: Martin laughs. Doesn’t sound so bad? Well, it’s not his pleasant, little-boy, tickle-me-some-more giggle. It’s a roaring, maniacal guffaw wholly inappropriate for a toddler. He cracks himself up singing song lyrics or repeating random phrases that, during the day, would produce no effect. At this moment he’s singsonging “Sorry about that!” interspersed with whoops of laughter that could suck the oxygen out of a whale.

As always, it could be worse. At least Martin’s not an angry drunk. To the contrary, he’s having the time of his life.

If I were to leave the room, the situation would change quickly. He would likely stay in bed (we’ve trained him in that), but his jolliness would turn to anguish. He hates to be alone during nighttime detox. So I stay, or I tag-team with Adrian so that one of us is here until Martin sleeps again.

My consolation prize for these all-nighters is two-fold. First, as I said, overall, detoxing is highly desirable, exactly what we’re trying to achieve these days. It is so directly consequential that Adrian and I often notice that interminable nights are followed by daytime breakthroughs like better speech and focus. Second, sleeplessness from detoxification is relatively infrequent compared to what we experienced before we radicalized Martin’s treatment. Martin used to be unable to sleep simply because he lacked the self-control to settle and/or the world overwhelmed his senses. We spent anywhere from 90 to 120 minutes just getting him to fall asleep (we had to restrain his legs physically, to help him lie still) and then expected that, most nights, he would be awake for several hours between 11:00 p.m. and 6:00 a.m., doing nothing other than verbally self-stimming and rhythmically kicking the wall or marching in place. The memory of those days and nights makes the occasional drunken midnight fiesta quite tolerable.

So now it’s 6:00 a.m. and the dawn is breaking. One hour to finger-peck this post on the iPad. At least I’ve put part of my night to good use.

The Dreaded Comparisons: My ASD Son When the Neurotypicals Come to Town

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Adrian has taken Martin to a birthday party, for two girls Martin knows from the neighborhood playgrounds. I stayed home because I had to work. Honestly, though, I’m glad I had to work. I have not yet arrived at the place where I’m comfortable with Martin around other children.

Of course I don’t mean that I don’t like Martin playing with other children. Quite the opposite: Since he turned the corner a couple months ago from parallel play to interactive, we’ve delighted in watching him discover his friends in new ways.

What I dread is watching adults realize that Martin is not quite like the other kids. We have chosen to reveal Martin’s condition only to family and to friends who have cause to interact regularly with him. So I’m not out there shouting the word autism to strangers, or even to acquaintances not really within our inner circle.

Which means that ofttimes I’m uncomfortable and/or making excuses.

Example: Last weekend Adrian, Martin, and I attended a housewarming party for friends in Westchester. The first couple hours, Martin was the lone child present, apart from a lovely 11-year-old who—whether from boredom or geniality—was willing to chase and chum around with our toddler. During those hours, none of the adults gave Martin a second glance, other than to comment on his being cute.

Toward the end of our visit, however, another family showed up with a five-year-old and a three-year-old daughter in tow. A basis for comparison. Within minutes it was evident that their three-year-old had better self-control and was far more advanced in language than ours. And so, because I don’t like anyone thinking my son is unintelligent, or even developmentally behind, I started covering for him. When Martin spun in circles, I smiled knowingly and said he was tired and over-stimulated from a long week. When he used only simple declarative and imperative sentences, I said that he is bilingual, and that his English is playing catch-up to his second language.

Perhaps I was just imagining that the other Westchester guests were wondering what’s wrong with Martin. (Now is a good time to note that, some months ago, Martin would attract the curiosity of even non-parents, who seemed to register that he was “off.” We’ve made enough progress that few now seem to notice without parental perception, or another child for comparison.) Moreover, apart from the hosts, we knew hardly a soul at the party. I had no reason to cover for Martin the way I did. It’s an instinct, I suppose. It’s also a reaction to watching how my child still lags behind.

Adrian confessed to being nervous about today’s birthday party, too. He was shaken last week by a playground visit during which he and Martin ran into an acquaintance and his son, who is half a year younger than Martin. That boy and his father were playing “pretend baseball,” imitating throwing and catching and running the bases. Adrian has been working hard with Martin on pretending skills, which is one of Martin’s toughest areas. Adrian expressed sorrow that Martin lacked the skills to join the pretend baseball game.

I have this to go on: With persistence, we may just resolve Martin’s ASD before he is old enough himself to make these dreaded comparisons.

ASD Recovery Recipe: Basic Cookies

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This recipe I can’t credit to any particular source, because by now I’ve made it so many times and changed it around so much that it’s an amalgam of different recipes and my own kitchen needs. This is our most basic recipe for baked cookies. Let me forewarn that, without eggs or anything that should not be eaten raw, the dough is edible. That’s a danger.

3 cups nut flour (usually, I use 2 cups almond and 1 cup hazelnut)
1 ripe pear, puréed
1/4 cup honey
1/3 cup coconut oil
3 tsps vanilla extract
1/4-1/2 tsp salt
1/4 tsp baking soda

Combine all ingredients and mix well. Form into little balls, place on an oiled (my choice is usually coconut, almond, or macademia oil) cookie sheet, and flatten into cookie discs. Bake 10-15 minutes at 300° until the cookies are golden but not yet brown.

I made these cookies this morning, for Martin to take to a birthday party this afternoon. For an added kick a whisked I quail egg and used it to glaze the cookies before baking. This had a two-fold benefit. First, it gave the finished cookies a shiny professional appearance. Second, because I don’t eat eggs, it will keep me from stealing the delicious morsels from Martin.

Something’s Fishy

Posted on by findingmykid
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In my recent post describing Martin’s diet, I mentioned that we had added three non-vegan products: eggs (now, duck and quail eggs), ghee, and honey.

I neglected to mention fish oil. I suppose it didn’t make the cut because, in my mind, it falls more on the “supplement” side, and less on “diet.” Fish oil is the most recent non-vegan addition to Martin’s diet. For me, it was also the most difficult to come to terms with, as it is not only non-vegan, but non-vegetarian. I’m certainly hoping that Martin will not be swallowing it for long.

If you think in vegetarian terms, you might be wondering why I decided to allow fish oil. What happened was that Martin’s excellent Track Two doctor wants Martin to have 1,000 mg (in any combination) of eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) daily. There are good sources of DHA that are vegetarian, usually under the brand name life’s DHA. I searched and found the highest-DHA vegetarian oils I could. Those oils have plenty of these omega fatty acids for the general population. With Martin needing so much DHA and EPA, however, I was having to give him several tablespoons of the vegetarian oils in order to hit the 1,000 mg mark.

Martin, you may remember from the diet post, was previously showing some signs of ketosis. I want to keep healthy fats in his diet, but not to overdo it. Since Martin already takes MCT oils twice daily, and his diet encompasses plenty other oils, I felt that several additional tablespoons of vegetarian oil with DHA was, indeed, overdoing it.

So I bit the bullet, so to speak—I’m trying to work this into some metaphor about shooting the fish or something, and I’m failing—and got Martin some fish oil, with which I am able to clear 1,000 mg EPA/DHA with only one teaspoon. I was worried about the possibility of an allergic reaction, as one of my brothers is terribly allergic to all seafood. No signs of that so far.

The whole decision reminded me of when Adrian and I thought the hardest thing we would be doing for Martin, diet-wise, was trying to keep him vegan. Then, after Martin’s ASD diagnosis but before we radicalized his treatment, we wondered how we would ever be able to go gluten-free with him. Those days seem so bygone, almost quaint.