ASD Recovery Six-Month Review: Sleeping

My last post, about my sleeping, alarmed folks. I received a number of concerned messages from friends and family. Even a phone call from my brother-in-law, who lives 5,000 miles away and wanted to tell me everything will be all right. Thank you, readers. I know that everything will be all right. And in fact, following through on my plans to get myself more rest just like I tackle Martin’s needs, I slept eight hours last night. Eight hours!

In celebration, I’m going to post about sleep again. Martin’s sleep, that is.

It was late January/early February 2011 when Adrian and I changed our plans for Martin and decided to treat his autism biomedically. From that point we needed about a month to get up and running—to convert his diet, to locate and visit a Track Two doctor, to find a professional to guide us through recovery.

That means we’ve been at this for about six months. I think now is an appropriate time to review how far we’ve come and to acknowledge what we still need to work on. I’ve divided Martin’s development into five areas: sleep, physicality, language, attention, and behavior. Over the next five days I will post about each of these areas, beginning with sleep, which is where we saw the fastest and most dramatic change.

Sleep was an issue from very early in Martin’s life. At about seven months old he woke erratically and cried sporadically throughout the night. I remember one particularly devastating week when Adrian was in Europe, six hours ahead of New York, on business. He was trying to concentrate on morning meetings while receiving middle-of-the-night emails from me, two and three per hour, complaining that Martin was up again, that I hadn’t even fallen back asleep since the last time. As soon as Adrian returned from that trip, we “sleep trained” Martin, using the Dr. Weissbluth method. The sleep training was tough (more specifically, tough love), but we got Martin sleeping through the night.

The success was short-lived. Not long after his first birthday, Martin developed even more severe sleeping problems. He became unable to settle himself, rustling about for 90 or even 120 minutes before he could fall asleep, then waking during the night or very early in the morning. Back then Martin slept in a large oval-shaped crib. When he started walking, he would rest his hand on the crib’s rail and run, around and around and around the crib’s interior until he dropped from exhaustion.

Once Martin moved to a toddler bed, the best chance we had was to restrain him physically. Either Adrian or I would sit next to the bed and pin Martin’s ankles to the sheets, to prevent him from goose-stepping in place. Martin would respond by thrusting his arms into the air until we held them down as well. Thus confined, Martin would flap his hands, wiggle his fingers, roll his head from side to side. He had to move. When he finally slept, it was in an odd position, often bent, his face pressed into the mattress and his backside aloft like a mountain peak.

The Big Imposing Hospital misdiagnosed this as “restless leg syndrome” and put Martin on iron supplements that stained his teeth. When the sleeping trouble continued unabated, they conducted an overnight sleep study, wired him up with brainwave sensors and breathing monitors. They found nothing.

By January 2011 Martin took one-to-two hours to fall asleep and most nights was awake, restless, for a three-to-four-hour window sometime between midnight and 6:00 a.m. On average, he slept through the night only once or twice each week, and in those instances he awoke at 5:00 or 6:00 a.m., unable to sleep again. Daytime naps didn’t help the situation; napping gave him the energy to keep himself awake even longer at night, sometimes until 11:00 p.m. or later. (His bedtime generally has been, and remains, 7:00 p.m.) We tried a weighted blanket, to no avail. He spent his days in bleary-eyed misery.

Almost as soon as we eliminated carbs (and sugar, and starch, and most everything else delectable) from Martin’s diet and added supplements, he began to sleep. As of late March, just for or five weeks into his recovery, Martin was falling asleep in 45 minutes or less and sleeping eleven-to-twelve hours through the night, five or six days a week. We still dealt with night waking one or two days a week, but the compulsive pitching about the bed ceased. Instead, Martin either lay still and chatted to himself or else laughed and acted drunk from his body detoxing.

As of today we more or less count on Martin sleeping through the night. If you’ve been reading this blog regularly, you know that we still have bad nights, and that we sometimes have two or three bad nights in succession, almost always related to Martin lumbering through a detox phase. But by and large, he falls asleep, and he stays asleep.

The quality of the rest has changed, too. He used to continue moving throughout the night. His head would be at the foot of the bed, then hanging off the side, then wedged against the headboard. Attempting to keep him covered was a fruitless endeavor. Now his head stays on the pillow, or at least in its vicinity.

Is there room for improvement? Always. I’m looking forward to the day when the detox nights end, so you don’t have to read posts like yesterday’s. I would like it if we could reduce Martin’s fall-asleep time to 15 minutes or less. And I’m sorry that we can’t allow Martin to nap. There are days when he looks like he could use an hour or two zonked out at midday. Can’t happen, though. Even a 30-minute nap keeps him awake until late into the night, and we lose precious hours of sleep.

Martin’s sleep is good, and getting better. My sleep is miserable, but hope springs eternal.

ASD Recovery Is Not a Big Bed of Roses. At Least Not One I Can Sleep In

Of all the facets of Martin’s recovery process, the most difficult for me has been my own exhaustion.

I’m exhausted because I just don’t sleep. There is so much to do, and I’m not the kind of person who can let it all go at 10:00 p.m. and doze off. I need seven-and-a-half hours’ sleep to feel rested. I can’t remember the last time I managed more than six. Most nights the total is closer to five. When work is busy it can dwindle to two or three.

Every couple weeks the sleeplessness catches up with me, and I feel myself toppling into depression. Tonight was such an evening. The apartment is a mess, I have three high-pressure projects for work, and Adrian has announced that he’s extra busy at the office and won’t be able to help out. Meanwhile, I am so tired that my attention span has faded to seconds. This evening I wandered from task to task, doing this and doing that and mysteriously finding nothing done, with a deep ache in my legs that means fatigue has infiltrated every muscle. With the fatigue comes desperation. When Adrian and Martin left the apartment for a short walk, I dropt onto the kitchen floor mat and slept for ten minutes amidst the wilted brussels sprout leaves and other accumulated dreck.

I committed to get a full night’s rest tonight, at least this one night. I left laundry stacked on the table, receipts scattered on the counter, and the guest room unmade, though guests are due tomorrow. I did not blog. I was in bed by 10:30 p.m. The iPad was off by 11:00.

It’s after 5:00 a.m. now. If you’ve been reading this blog, you may know enough to fill in the last six hours. The laundry, receipts, and guest room occupied my mind and erected a little barrier to sleep, which I was not able to cross until 12:19 a.m. or so. At least, 12:19 is the last time I remember glancing at the clock. At 2:02 a.m. Martin called me in a panic. Adrian went to him. I was able to sleep again until 2:42 a.m., when Adrian returned and said Martin was still awake, with detox symptoms. From 2:42 until 4:06 a.m. I lay in bed. I dozed a few minutes now and then, each time roused by Martin crying, “Mommy!” from his room. Martin stayed in his bed, so I resisted going to him. At 4:02 a.m. a mosquito bit me.

At 4:06 a.m. Martin became agitated and unable to settle himself. I gave up and brought the iPad to his room. Here I sit.

Best case scenario, Martin falls back to sleep within the next 15 minutes, say, by 5:30 a.m., and I am back to sleep myself by 6:00 a.m. Adrian has his alarm set for 7:00. I’ll get up then, too. Samara isn’t coming today—yesterday’s hurricane-cum-tropical storm flooded her basement, so she’s staying home to clean—and I will feel oblgated to get up at 7:00 and prepare everything for the substitute nanny who’s due by 10:00 a.m., plus make up the guest room.

I will have slept from 12:19-2:02 a.m., from approximately 2:10-2:42 a.m., some 20 or 30 minutes between 2:42 and 4:06 a.m., and from 6:00-7:00 a.m. Grand total, three hours and 15 minutes. This day, this day that begins in less than two hours, will be a stupor. I tell myself that I will nap, but I won’t. If I wrest half an hour from work and food preparation, I will put away laundry or try to deal with the downstairs linen closet, where Freddy the cat has been peeing.

When friends or acquaintances ask about Martin, I give one of two responses. If they don’t know Martin has autism, I say he’s “getting so big” and offer a milestone or two that most closely track neurotypicality, like how high he can count or what songs he can sing. If they know our situation, I speak enthusiastically (and not disingenuously) of the progress we’re making.

But I dream of responding the way I feel right now. Covering my head with my hands, collapsing, crying. Explaining, “It’s so hard. It’s just so hard. I don’t know how I can go on.”

That’s fantasy, of course. Drama. A scene that plays out much better in my head than it would in reality. I would get limited sympathy, and in the bigger picture, I deserve limited sympathy. I’ve already acknowledged that I have every advantage in the world when it comes to treating Martin. I don’t have to know the anguish of wanting to do more for Martin than I can afford. My health is good, and I can survive without much sleep, at least these few years hat recovery takes. Adrian helps when he can.

The hard truth is that sleeplessness is of my own doing. I’ve mastered most of what I have to do, so far, for Martin’s recovery. The exception is my own schedule. If I can only manage to attack my sleep schedule with the same ferocity as food, supplements, and exercises, I can improve the situation a lot.

So I’m going to sleep an hour until 7:00 a.m., then try to find the energy and clear-headedness to solve another problem. Stay tuned.

Magic-Potion Fatigue: Vitamins and Oils and Supplements, Oh My!

Martin’s day is governed by a ditto sheet. It’s a print-out that I designed.

At the top are spaces to note the date and day of the week, followed by how Martin slept the previous night. About half the page comprises a chart describing each of Martin’s sixteen HANDLE exercises and identifying the adult responsible—me, Adrian, or Samara—for completing the particular exercise. With each description is a box for the adult to write the time at which the exercise was completed, because some of them cannot be done too close together.

Below the HANDLE chart is an entirely separate graphic, this one devoted to Martin’s biomedical interventions and food for the day. The food is easy. I jot down what he eats for breakfast, lunch, snacks, and dinner; nine times out of ten I’m just transcribing what appears on the typewritten menu I devise a week in advance. For the biomedical stuff, which along with the restricted diet is the heart of what I call Track Two autism treatment, I list each vitamin, oil, or supplement Martin needs to take, and when. Next to each of these is a box to check once the supplement has been administered. I check most of the boxes. Samara checks the rest, for the supplements she does mid-day.

Finally, at the bottom of the ditto is a space marked “Notes,” where I record how Martin’s day went, how he acted, his bowel movements, any remarkable developments, and so forth.

This ditto is revised every time we visit Martin’s HANDLE therapist, homotoxicologist, or Track Two doctor.

I am not going to list Martin’s supplements in this post. I don’t think that would be helpful to other parents/caregivers, because such a routine must be professionally customized. I will say that on Martin’s current supplements graphic are 46 boxes to check. Most boxes represent one item each—one pill, one capsule, one type of drops, one scoop of powder, one teaspoon of oil, one dab of cream, one spoonful of liquid. A few of the boxes denote “combos,” like eight types of homotoxicology drops combined, or three different phenol drops. Two boxes are checked only every third day. Many of the supplements I can combine and give at once, like vitamin D, vitamin E, and vitamin K2 floating in a teaspoonful of MCT oil. The supplements chart represents everything recommended by Martin’s Track Two doctor, allergist, and homotoxicologist. Each of them knows what the others are doing.

Almost nothing we give Martin requires a prescription to purchase. It’s gentle and natural, like fish oil, parsley extract, probiotics, or digestive enzymes, stuff you might find in an organic grocery.

And getting through the extensive routine isn’t half as bad as you might think. It takes time, but the chart makes it easy to keep track of, and Martin helpfully swallows just about anything I or Samara pops into his mouth.

What is driving me bonkers, however, is trying to find a way to spread the supplements out as requested. Several of them are not supposed to be taken within 30 minutes before or 90 minutes after eating, and a couple are not supposed to be taken at the same time as other supplements. Martin spends about 12 of every 24 hours in bed. In the remaining 12 hours he eats three meals and at least one snack. In less than two weeks he also will be in school, or traveling to/from school, for seven hours each weekday. Seriously, there just are not enough hours in the day to get the supplements right. I have the chart divided into first morning, 10 minutes before breakfast, with breakfast, after breakfast, after school (this in anticipation of his new fall schedule; used to be with lunch), after bath, before dinner, with dinner, after dinner, and at bedtime. Even that is not sufficient. I cut corners on spreading everything out.

When we first began biomedical intervention, I stored Martin’s supplements in a wire basket on the counter. As the routine expanded the supplements moved into more spacious quarters in a plastic food-storage container (which I’m no longer allowed to use for food storage), and then two plastic food-storage containers, plus an in-door shelf of my refrigerator. By June the counter was getting so cluttered, I had no choice but to evict a couple stacks of dishes and surrender the entire bottom of my dish cabinet to supplements. That’s the picture below; most everything there is Martin’s, except for half a dozen bottles of my own vitamins, and a tube of poultry-flavored toothpaste for our cat Freddy’s at-home dental hygiene needs.

There’s one more box that gets checked on Martin’s daily ditto log: “brush teeth.” That means Martin’s teeth, not Freddy’s. Because in the course of an ASD-recovery day, it’s easy to forget the obvious.

ASD Recovery Recipe: Curry-Lentil Patties

This is another recipe adapted from the Vegan Planet cookbook. The cookbook suggests serving the patties with three-fruit chutney. That’s not available for Martin, but I find that either homemade cilantro-coconut chutney or else a cilantro-avocado spread make a nice alternative. Another variation is to dice fresh curry leaves (if you can find them) and sauté them with the squash, then decrease the curry powder accordingly.

olive oil
1/2 cup minced onion (I substitute celery)
1/2 cup lentils, pre-soaked
1 cup diced butternut or acorn squash
1/2 cup raw almonds, pre-soaked
2/3 cup sunflour (or sesame seeds, soaked and dried)
1/4 cup minced parsley leaves
2 tsps curry powder
1/2 tsp salt
1/8 tsp cayenne (I leave this out)

Cook the lentils and drain them well. Bake or sauté (do not boil, because it makes the patties too wet) the squash until soft. Heat a spoonful of olive oil in a frying pan, add the onion, cover, and cook five minutes until soft. Transfer the onion to a food processor, leaving as much oil as possible in the frying pan. Add the remaining ingredients to the food processor and process until smooth. Form into patties, about ½-inch thick. Add some more oil to the frying pan and fry the patties until browned on each side.

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

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)

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

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.