Monthly Archives: September 2011

ASD Recovery Six-Month Review: Behavior

Posted on by findingmykid
5

Last year around this time, I thought I was a bad parent.

I have limited experience with young children, so I had only an inkling of how difficult managing a two-year-old should be. I just knew that watching Martin utterly exasperated me. He would not respond when I called him; he failed to follow the simplest directions; my anger, or annoyance, only amused him; time-outs produced no effects; the simplest task (putting on shoes, getting out the door) blossomed into a twenty-minute test of nerves.

I am not a loud person. Nor am I aggressive toward my child. Still, I found myself yelling, struggling to command, if not his obedience, then at least his attention.

The evening hours, when Samara had gone home and I needed to prepare dinner, hurt the most. Unable to occupy himself for more than a few seconds, Martin whined continuously, ran circles around our staircase, caused injury to himself or our possessions. These evening hours were my primary time with Martin, and I should have relished them. Instead, I sometimes dreaded Samara’s departure. That’s hard to admit. But it’s true.

Martin’s ASD diagnosis helped little. For the first time I understood why we struggled, and my empathy for Martin grew. Understanding and empathy, however, did not translate into increased ability to control his behavior. I was lost.

Six months into biomedical treatment of Martin’s autism, he does not behave perfectly, or even as a three-year-old with typical self-control might. For example, if I’m not next to him, reminding him to stay and eat, Martin wanders away from the breakfast table. He can be hyperactive. Although we’ve taught him the meaning of “clean up,” he has a narrow appreciation for order. When he’s done with a toy or object, he drops it and walks away. By dinnertime, chaos overtakes the apartment.

And the toughest part is that, with limited exceptions, Martin remains unable to read facial expressions or comprehend displeasure. He still considers almost any display of emotion humorous. Last night, as he was falling asleep, Martin repeated, dozens of times, “Martin, I am angry with you. Martin, Mommy is angry,” and laughed. That pretty much encapsulated my attempts at discipline.

Nevertheless, we’ve seen improvement in Martin’s ability to play and mastery of his own actions—skills that enable me to look forward to our time together. (Now that his new school has started, our time has shifted to the early-morning hours, with a bedtime addendum.) Simply because he does not need to keep constantly in motion, Martin finds less trouble to get into. The improvements in his attention and play skills mean that I might find him quietly building a chain of trains or looking through a book while I prepare a meal. With better receptive language, he understands more and more what I want him to do, and he often goes along with minimal cajoling. He also seems to know that eventually Mommy will get her way; when he’s in an amenable mood, he’s fine with Mommy prevailing sooner rather than later.

I haven’t raised my voice in weeks, except for the occasion when Martin slipped his hand from my grasp and ran into an active parking lot.

Of course, this isn’t all from the biomedical intervention. I’ve learned how better to handle Martin’s needs, such as transitioning him away from an object of obsession (like a guitar). A dedicated team of behavioral therapists also has helped. Finally, Martin is maturing.

Even ASD kids mature, right?

It’s the First Day of Special-Education Preschool. Martin Is Not Ready to Graduate

Posted on by findingmykid
11

Martin started his new school today. His fellow students are very high-functioning. Three-quarters of them I would have assumed to be typically developing, had we met in any setting other than a special-education preschool.

Adrian, my mother, and I all delivered Martin to his teacher. Adrian snapped a dozen pictures. We left one at a time: my mother, then Adrian, and finally I. Martin protested mildly when I left, a few Mommy whimpers. I thought the parting went well.

He’s in a 12-student, one-teacher, two-assistant (“12-1-2”) classroom now, for five-and-a-half hours per day. That’s a big jump from his former school, where he participated in a seven-student, eight-teacher group two hours daily. His old school recommended an 8-1-3 class for this year, based on his difficulties with “attending” in a group setting; we reached to get him placed in the more advanced 12-1-2.

I returned to pick him up this afternoon and asked the teacher how Martin’s day had gone.

He did well, she responded, her tone even and unenthusiastic.

“I perceive some hesitation?” I inquired.

He had some trouble with transitions, she owned. She expects that to lessen as Martin learns his new routine. (Transitioning is moving from one activity to another. We’ve made progress in that area, but Martin still might tantrum when ending activities he enjoys, such as music.)

I decided to push. “How was his attending?”

He did need to be redirected throughout the day, the teacher said. Attending is a skill they will be working on all year long.

I walked away from the conversation disappointed. What I had fancifully longed to hear was an implication that Martin performed so well in the 12-1-2 classroom that he would probably soon be ready for a 15-1-2. What I had thought was realistically possible to hear was that Martin belongs in a 12-1-2 classroom and is up to snuff.

What I instead read into the teacher’s words was a suggestion that Martin may not yet be far enough along to keep up with the highest-functioning special education kids.

That was hard.

My rational side sees that it’s silly to think a first-day analysis can predict the year. My hopeful side believes that wherever Martin is now, he will continue to improve.

But my fragile side, the side that autism has left naked and raw, is wounded by the acknowledgment of Martin’s current shortcomings, even if I know them myself.

A few minutes after I spoke with Martin’s teacher, the school’s director of admissions, who was mingling with parents making first-day conversation, approached me and asked how I was feeling.

Martin had some trouble transitioning, I responded.

“Of course he did. They all do the first day,” she said.

And his attending still needs work, I said. At this point something in my manner must have signaled my frustration, because the director switched to a tone of voice both matter-of-fact and consoling.

“Oh, but you knew that,” she said. “You know his attending needs work.”

It’s true. I know. I know that we have far to go.

ASD Recovery Six-Month Review: Attention

Posted on by findingmykid
Reply

As I described in a previous post, Martin almost always had sleeping problems. The Big Imposing Hospital fired a variety of diagnoses at the sleeping issues—Restless Leg Syndrome, anxiety, improper home environment—hoping one would stick. No one there connected Martin’s inability to settle himself with autism, and neither did we.

No, the beacon of Martin’s real issue, for me and Adrian, was instead his attention. Or rather, his lack of attention.

Sitting and paying attention is difficult for a two-year-old. For Martin, it was infeasible, for any length of time. Unless lethargy overcame him, or he was strapped into a high chair or stroller, he simply could not stop moving and sit down. In the event he was able, with the “assistance” of an adult, to sit, he lasted only moments before becoming agitated. His toddler soccer class, which consisted mostly of toddlers scattering, gamely accommodated his unique style of participation. His pre-pre-school class for two-year-olds, on the other hand, kicked him out. Martin required an extra teacher to keep him from disturbing the class, they said, which was an amenity they were not willing to provide.

Back then Martin lacked joint attention. He did not engage with other children. He did not follow what they did. He did not imitate. He did not involve his parents or Samara in what he was doing. He commented on what he saw—Airplane! Moon! Mailbox! —but the soundtrack seemed to be for his own amusement; he made no effort to make sure we shared the experience. Indeed, he spent much of the day in Martinland, a private island of his own making, inhabited only by him, in his own head.

He responded to his name maybe 20% of the times we called it. On a good day.

He often drifted about the perimeter of the room, running his hand along walls and heat registers, apparently aimless. He kept his obsessions (musical instruments) constantly in hand. Other toys and books, however, he yanked from the toy chest and then dropped after no more than a second or two. We never saw him play with those toys in the manner in which they were intended, or in any manner. A toy truck might as well have been a stuffed zebra, from Martin’s perspective. They both ended up discarded.

And of course he had the shifty gaze. He avoided eye contact. If I forced him to meet my eyes, if I cupped his face to mine and used my palms as blinders, he cried immediately. One day last fall, before the official diagnosis, a girlfriend of mine squatted to address Martin in his stroller. Though she was no more than 18 inches from him, Martin gave no indication that he saw or heard her. He looked to some distant point, in a kind of fog. My friend asked, not unkindly, “Why is he doing that? Is something wrong?” I responded that we really should get going.

As of today, Martin seldom visits Martinland. The aimless wandering has stopped. He responds to his name 80% of the time, I estimate. Eye contact is regular and routine. As for joint attention, he has not advanced to typical three-year-old behavior, which would be calling Mommy! Mommy! or otherwise seeking my attention before he speaks. But he has started to look at me (or Adrian, or Samara) when he does speak, to make sure that we’re listening. He no longer releases comments into thin air. He now directs them toward someone. For example, if he’s watching Sesame Street and someone dives into the water, Martin shouts, “He’s in the water!” and then turns to make sure we saw it too.

Slowly he has begun to engage with other children. Usually the other child has to initiate the play. Once that’s accomplished, Martin joins in happily, such as chasing and seeking to be chased, or sitting in a playhouse. He shows an interest now in what others are up to. Last week he played for some minutes with a girl he knows, climbing playground equipment and running together. The fun stopped only when she wanted to catch and throw a ball, which is a physical skill Martin is yet to acquire.

Despite the improvements, attention is an area with room to grow. According to the teachers at his last school, Martin continues to have difficulty “attending,” which seems to be the official word for “doing what the rest of the kids are doing.” When the class sat in a group, Martin required constant redirecting to the task at hand. And the gulf still stretches between Martin and other kids when it comes to wanting others to see what he sees. I await the day when Martin approaches me with Mommy! not because he wants a cracker or drink or cuddle, but because he wants to tell me something, to relay some observation, be it earth-shaking or trite.

Overall, though, it is fair to say that over these past six months Martin has become more present. He is more with us, more in our world.

We couldn’t be happier to have him.

ASD Recovery Recipe: Umm, Like, White Chili? Or Stew? Chili-Like Stew?

Posted on by findingmykid
Reply

This began as a recipe for “vegetarian white bean chili” that I had found someplace and copied onto a note card. Of course, the loss of tomatoes, peppers, onions, and garlic from Martin’s current diet means that “chili,” in its usual form, does not work for us. So I changed nearly every ingredient in the recipe and came up with something between root-vegetable chili and a stew. It was delicious. Martin ate the chili/stew as is. After Martin went to bed, I set aside a portion for his next-day lunch and mixed the remainder into tomato sauce, which I served with gnocchi for me, Adrian, and our houseguests. Happiness all around.

1/4 cup oil (I used sunflower)
1 cup navy beans, pre-soaked
1.5 cups vegetable juice (I juiced an acorn squash, two parsnips, and some celery)
1 turnip, diced
3 ribs celery, diced
1 yellow squash, peeled and diced
1/4 cup fresh cilantro, chopped
1 tbsp fresh oregano leaves
1 tbsp fresh basil, chopped
1/2 tsp ground cumin
1 tsp celery salt (I used my mother’s, which is all celery and no salt)

Half-cook the pre-soaked beans in filtered water, until they are softened but not squishy, then drain. Combine the half-cooked beans with the vegetable juice and squash; cook over medium-high heat. Meanwhile, sauté the turnip and celery in the oil until soft. When the beans are almost cooked through, add the turnip-celery mixture and the spices. Finish cooking.

Chumbawamba, Friedrich Schiller. I’ll Be a Hero. I Know I Will

Posted on by findingmykid
4

The ASD recovery six-month review continues this evening. I’m posting twice today. I’m posting right now because Adrian feels depressed. We’re having the less-than-fabulous week I wrote about last night, and then this morning he read a father’s Wall Street Journal piece about a 15-year-old on the spectrum. The article reflects the grieve-for-the-child-you-don’t-have, celebrate-the-child-you-do-have, learn-from-difference perspective I discussed in my very first post.

Adrian emailed me the article. (In the event you’re reading between the lines, yes, it’s Labor Day, and we’re both working—lawyers to the core. Martin is out playing with my mother.) I read it and promptly replied to Adrian: “No. [Expletive] that. I’m not doing one iota of grieving until I have exhausted every avenue for overcoming ASD. No more articles like that, please.”

I refuse to grieve. I refuse to accept. I refuse to live with autism. I honor and adore Martin for who he is, at every step of this journey. But I refuse to stop trying to change him.

These words probably come across as haughty. It looks like I am suggesting that I—that we, all of us soldiers who believe we will recover our children, all the conquistadors who already recovered their children—have found a better way to deal with autism. Believe my assurance that I am a million miles from haughty about recovering Martin. I am uncertain, wobble-footed, and terrified about whether we will reach our goal. I wonder whether we are being taken on a long, expensive ride designed to exploit the hopes of desperate parents. This entire experience has humbled me, and Adrian, like nothing else. We have one child. We intended him to be perfect. Even when we recover Martin, he will be behind his peers. He’s lost so much time living alone in Martin-Land, under-communicative, distanced from us and other children.

I speak in absolutes because, from my perspective, acceptance is a dangerous slope. Each step toward reconciling myself to Martin’s autism is a step away from the unwavering determination needed to see this recovery process to its end, wherever that may be.

This Wall Street Journal article that depressed Adrian is, ironically, exactly the kick in the pants I needed this week. Reading it dropped that old 1990s Chumbawamba song Tubthumping into my head. You know the one: “I get knocked down, but I get up again. You’re never gonna keep me down.” Cheesy? Yes. Uncomfortably catchy? Maybe. A little shot of adrenaline when you need something to keep you going? Sure can be.

I’m guilty of various musical mantras these days. Adrian, a classical music fan, wonders why I’ve asked to hear Beethoven’s Ninth Symphony in the car lately. He thinks I like the beginning of the fourth movement, the main portion of Schiller’s Ode to Joy that everyone knows. What I really want is a later, less-popular chorus of the Ode, this one: “Froh, wie seine Sonnen fliegen / Durch des Himmels prächt’gen Plan, / Laufet, Brüder, eure Bahn, / Freudig, wie ein Held zum Siegen.” That means, “Happy, as his suns fly / Through heaven’s magnificent plain / Run, brothers, your way / Joyful, as a hero to the victory.”

Freudig, wie ein Held zum Siegen. Joyful, as a hero to the victory.

I will never stop. Chumbawamba, Friedrich Schiller. And this hero to the victory.

Violent, Unrelenting, and Exhausting: What I Wish I Had Known About ASD Recovery

Posted on by findingmykid
2

Yesterday I posted a promise that this blog would return, today, to the six-month evaluation of Martin’s ASD recovery. I don’t want to be the kind of blogger who makes a pledge and fails to pay, especially not when I’ve been blogging only a month. But I’m going to risk breaching my readers’ faith with one more diversion. I have to, because this crap day topping off this crap week compels me to address a new topic: what I wish I had known when we decided to treat autism biomedically. What I wish I had known, so I could have steeled myself.

I wish I had known that recovery would sometimes beat the daylights out of Martin. I’ve already written about how arduous I find chaperoning Martin’s recovery. That’s a bunch of self-indulgent reverie. Martin is the patient actually doing the work of emerging from autism. Martin is the guy too drunk from detox to sleep at night, too drowsy from sleeplessness to function during the day. Martin is the guy whose very cognition vacillates, who must wonder why his mind functioned differently yesterday than it will tomorrow. Martin is the guy who swallows pill after pill, oil upon oil, without protest, who accepts without explanation that he can’t eat what Adrian and I eat, that his sweetest treat is neither birthday cake nor Halloween booty, but a pear. My son today remained his darling, loving self even as he teetered on exhaustion, crying without provocation, unable to concentrate or to enjoy any toy, any game. I endured on the thought that these few years are saving him from a lifetime of lethargy and gut pain, muscle fatigue, and inability to connect with other souls.

If only he too could see the prize.

I wish I had known that my work would be every day, unrelenting. No one knows Martin’s diet, supplementation, and routine like I do. Not my mother, who is visiting. Not Martin’s excellent Track Two doctor, who oversees his care. Not even Samara, who is with Martin five days a week. I can never sleep in; certain pills and drops must be given as soon as Martin rises, and spreading his HANDLE exercises throughout the day means completing some before breakfast. I can leave the apartment for an evening, but I can never take a break; for me to be gone a few hours requires adjusting his supplementation before and after, completing exercises ahead of schedule, preparing food. Last month a family member became ill, requiring me to make an impromptu four-day trip to Germany. I ended up pulling two consecutive all-nighters before I could depart, getting my business affairs in order and then spending nearly 24 hours in the kitchen, freezing meals and training Samara, who had to move into our apartment while I was away. I long to declare a holiday from ASD recovery: a morning, noon, and night just for me, to squander as I see fit.

I never will.

I wish I had known what it feels like to run the proverbial marathon. For at least ten days now, Martin’s progress seems to have stalled. He’s had no concentration. His sleep has faltered. He’s even engaged in self-stimming behaviors. I begin to doubt whether we will succeed in recovering Martin. I can’t help but doubt. This evening I was out on a prepared-in-advance jaunt, showing some tourist friends Times Square after dusk, when I received this email from Adrian: “I was looking at some pictures of Martin and realizing that I am ultimately very scared of the whole thing.” Some months ago Martin’s excellent Track Two doctor commended me and Adrian for noting even the flyspecks of progress—the times when Martin understands a facial expression, or reads a gesture, or engages another child. The recovery process is so long, so tortuous, the doctor said, that the parents who catch these little things are the ones who ultimately succeed. The parents who, on the other hand, await the morning when their child will suddenly wake up neurotypical lack the stamina to finish the journey. They give up. The doctor’s word sounded so true, and I recognize them to be such. But I wish I had known that even those among us who record signs of recovery in every detail, however ephemeral, eventually will flag.

And I wish I knew, now, how to hold it together when recovery is beating the daylights out of Martin, when my work is unrelenting, and when it feels like this marathon will never end.

ASD Recovery Recipe: The Actually Tasty Broccoli-And-Greens Purée

Posted on by findingmykid
6

I promise to return, tomorrow, to my ASD recovery six-month review. Meanwhile, I realized this evening, as I prepared it, that I have not yet posted the recipe for my most-favorite go-to dinner for Martin: Indian broccoli-and-greens purée. You may be thinking that broccoli-and-greens purée sounds too healthy to be tasty. This dish is indeed healthy. On the other hand, I pile on the fats and spices to make it rich and delicious. As evidence of its appeal, I offer an anecdote: This evening Adrian was helping Martin eat, while I meted out the day’s final supplements and prepared Martin’s room for bedtime. Martin was watching a Sesame Street video and obviously content with the food. Nevertheless, at some point Adrian (who had already polished off his own portion of purée) called, “Martin says he doesn’t want any more of his dinner. He says I can finish it.” Yes, my husband was attempting to steal food from our three-year-old son. It’s that yummy.

As to why this is a favorite go-to dish, it requires very little that is fresh, except for sweet potato or squash, and ginger, which can all hang around for quite a while before going bad. That means I can schedule broccoli-and-greens purée toward the end of the grocery-shopping cycle and not worry about the ingredients spoiling before I prepare the meal.

The most challenging ingredient is cashew cream. I make cashew cream at home. I soak raw cashews overnight in purified water, drain and rinse them, Vitamix them at high speed with more purified water, strain through a nut-milk bag to make cashew milk, then cook the milk over medium heat (stirring constantly to prevent scorching) until it becomes creamy. This concoction keeps well in the refrigerator. If you want to avoid making cashew cream at home, replacement options for this recipe include (1) a nondairy cream cheese that fits the requirements of your child’s current diet, such as Dr. Cow; (2) a nondairy yogurt that fits the requirements of your child’s current diet; or (3) creamed coconut (I like the Let’s Do…Organic brand), very modestly diluted with warm filtered water.

This recipe is adapted from a version of nariyal sak found in Lord Krishna’s Cuisine: The Art of Indian Vegetarian Cooking. That’s a book about Vedic cooking, which among other things does not use onion or garlic—very helpful to me in these trying months until Martin is allowed to have them again. As I’ve made clear, I think onion and garlic are sustenance of the gods, except (apparently) Lord Krishna.

10 oz. frozen broccoli
10 oz. frozen spinach or kale
10 oz. frozen something else green, like asparagus or green beans
1 sweet potato (or 1/2 acorn squash), peeled and diced
2 green chili peppers (I leave these out right now)
1″ chunk of ginger root, peeled and sliced
1/2 tsp turmeric
2 tsps ground coriander
1 tsp salt (I replace with kelp or dried and ground celery)
1/4-1/3 cup ghee
2 tsps cumin seeds (preferably pre-soaked and dried)
1 tsp garam masala (this is an Indian spice, available at most groceries)
1/4-1/3 cup cashew cream (see introduction, above)

Put the frozen veggies, sweet potato or squash, chili peppers if using, ginger root, turmeric, coriander, and salt or salt replacement into a large pot, turn the heat to medium, and cover. Stirring occasionally to prevent sticking, let everything simmer until the sweet potato or squash is very tender, about 45 minutes. Then purée the cooked mixture in a food processor.

Heat the ghee over medium-to-medium-high heat in a large frying pan. (I know it seems like a lot of ghee, but everything else in the recipe is salubrious. Cut yourself a break and throw in ghee with abandon.) When the ghee is hot, add the cumin seeds and let them sizzle for 30 seconds until they darken a little, then scoop in the entire puréed greens. Cook until all the ghee is absorbed into the greens mixture, about five minutes.

Reduce the heat to medium-low and stir in the garam masala and cashew cream. Warm through and serve.

If your child is able to have grains, rice makes an ideal accompaniment to this dish. I try to complete the Indian effect by quickly frying, in ghee, the quinoa “pita breads” my mother makes for Martin and pretending that they are naan. That is mostly for my own amusement. Martin wouldn’t recognize a naan if it crawled into bed with him.

ASD Recovery Recipe: Eenie-Meenie-Zucchini-Tahini

Posted on by findingmykid
Reply

If a food is vaguely pasty and not clearly identifiable as puréed broccoli, my son calls it “hummus.” Skordalia, blended dahl, even nut butters—in Martin’s palate, they’re all hummus. I don’t mind so much; after all, he likes hummus, in all its iterations. Nevertheless, I crave some variety in monikers, and I’m not above going cutesy to get it. That’s how this recipe, a version of which Kathleen Reily sent me as “zucchini hummus,” instead became known in my home as eenie-meenie-zucchini-tahini. If you can throw a bunch of stuff in a food processor or Vitamix, you can make eenie-meenie-zucchini-tahini. Saying the name ten times fast is much more challenging.

2 peeled zucchini, roughly cut
1 cup raw tahini
1/3 cup fresh lemon juice, or mixed lemon and lime juice
1/2 cup olive oil (or another light-colored oil such as macademia, to taste)
sea salt
1-2 tsps ground cumin

Process all ingredients in a food processor or Vitamix until smooth and creamy. Among other small variations, this recipe can also be made with garlic (I would say four cloves raw or six cloves roasted). When Martin can eat garlic again, I’ll go back to adding it, because with the exceptions of hibiscus tea and (some) desserts, everything tastes better with garlic.

ASD Recovery Six-Month Review: Language

Posted on by findingmykid
3

Of sleep, physicality, language, attention, and behavior, I find myself least satisfied with Martin’s progress in language.

When Martin first started to talk, he marveled us with his vocabulary. He proved himself able to absorb and retain most any word or phrase, and to apply it properly. Fork. Book. Brick. That’s not a telephone. Goal! He grasped sophisticated concepts like possessives. Mommy’s desk. The bicycle of Lola’s father. What’s more, we’re raising Martin bilingual, so he did all this in both English and Spanish, never mixing the two. English for Mommy. Spanish for Papá and Samara, the nanny. Perro. Pato. Baño. Samáforo. Oy, ¡que tráfico! When friends came to visit from Germany, he added Keksen and Donnerwetter! into the mix.

We were proud. As first-time parents who have limited experience with young children, Adrian and I equated a large vocabulary, and the ability to repeat phrases, with exceptional language skills. We showed him off, pointing from object to object. Martin, what’s that? And that? That?

Only later, after it was explained to us, did we realize what was missing. Martin stuck to single words, almost invariably nouns, and to parroting series of words. He never concocted sentences. He never combined his words into original thoughts. He never asked questions.

He never said, “Yes.”

In fact, Martin was echolalic. He knew which words attached to which things, but he had no concept of language’s interactive use. “I” versus “you” was foreign to Martin. His conversation was limited to repeating what he heard last.

Martin, would you like some water?

Some water.

Martin, do you want a cookie?

You want a cookie.

Martin, may I kiss your tummy?

Kiss your tummy.

After six months of biomedical intervention, and almost nine months of five-times-weekly language therapy, not enough has changed. Martin has started using sentences, and also making original observations. Mommy is wearing a necklace. The house has a floor. And he can answer questions with yes, albeit sometimes on the second try.

Martin, do you need help?

You need help.

Martin, do you need help?

Yes.

But although Martin now seems to listen to, and comprehend, what others say, he has not achieved fully interactive conversation. He has not yet ever asked a question, other than regurgitating what is asked of him. What are you doing? What are you doing? He does not use the command form; in its place he substitutes either a declaration—Mommy is going to play the guitar, instead of, Mommy, play the guitar—or a phrase he associates with the outcome he seeks, such as Kiss your tummy! when he wants his tummy kissed. He can’t use pronouns correctly. You want to watch Johnny Cash means, I want to watch Johnny Cash. (If you’re wondering why my three-year-old son wants to watch Johnny Cash, just let it go.) Often he refers to himself in the third person, as if he were Elmo from Sesame Street: This is Martin’s bed. Martin is doing pee-pees. Martin is drinking kombucha. (If you’re wondering why my three-year-old son is drinking kombucha, probably best to let that go, too.)

So I am disappointed with Martin’s language at this time, because it just doesn’t seem to be developing at the same clip as, say, his behavior. I hope that, six months from now when I post a one-year review of his recovery, I’ll have better language news to share.

Until tomorrow, then. I’m off to kiss your tummy!

ASD Recovery Six-Month Review: Physicality

Posted on by findingmykid
2

Martin’s body has changed. Before we changed his diet, Martin was lanky with a slightly distended belly. He hovered around the 90th height percentile for his age but only the 50th weight percentile. With the dietary changes Martin began to fill out. At last check he was in the 92nd height percentile and the 78th weight percentile. His belly, meanwhile, deflated. Now I wish for abs like Martin’s.

Martin’s head circumference was and remains large, and I don’t expect that to change. I understand large head circumference to be common in kids on the spectrum. I will, however, point out that my own father has a ridiculously giant noggin—well above the 99th percentile, I know because a geneticist at the Big Imposing Hospital asked me to measure it, which I did with my yellow plastic sewing tape. Moreover, a person would be hard-pressed to declare Adrian small-headed either, figuratively or literally. So I figure that, with giant noggin-ness on both sides of his family, Martin was headed that direction from conception.

We were surprised to learn, when Martin first was diagnosed, that he had low muscle tone; he always had seemed able to run and climb, and it’s easy to mistake those actions for strength. But a neurologist at the Big Imposing Hospital said, and Martin’s excellent Track Two doctor confirmed, that his muscle tone was low. In fact, Martin’s trunk strength was so lacking that he slouched whenever he sat. The muscle-tone issues now have almost completely resolved. Martin’s physical therapist recently said that his muscle tone has become more or less indistinguishable from that of a neurotypical child.

Martin used to cycle in and out of lethargy. About three-quarters of his waking hours he spent in Tasmanian-devil mode. The remaining time he collapsed on the floor, maybe pushing a toy back and forth, without the energy to rise. I cannot recall the last time we experienced lethargy—Martin’s, that is; I’d be happy to enumerate the dozen or so times today when I felt lethargic—that was not connected with a sleepless night.

Until this spring, Martin did “posturing,” from discomfort: He clutched his stomach and leaned forward or squatted. He fell asleep posturing, in a quasi-fetal position or with his backside thrust skyward. He even postured while running, which might cause him to pitch forward and slide headlong across our hardwood floors. Though it seemed inappropriate from me and Adrian to laugh, we did. Occasionally.

Martin used to do a lot of “tip-toe walking,” or ambulating by shuffling his feet, heels off the ground. These days he uses a conventional heel-to-toe step, except on bad days when he reverts to tip-toe walking. Then a few reminders to do “big-boy walking” usually snap him back to heel-to-toe.

In terms of where we have room for improvement, of course I’d like to see the elimination of all tip-toe walking, unless Martin is, well, consciously tip-toeing, like in a game of mischief.  His coordination still needs work, too. I think we’ve come a long way since the Big Imposing Hospital scored him in the bottom 1% for manual dexterity. Nevertheless, his pincer grasp and objection manipulation still lag. Also, Martin is a klutz. (I blame this, like the big head, on Adrian. I won’t say “klutz” about Adrian, but the term “penguin feet” does come to mind.) If Martin is going to fulfill my—I mean, his—dream of playing the U.S. Open tennis tournament by age 20, we’ll need to stomp out the klutziness.

Finally, one additional aspect of physicality is appearance. And dagnabbit if throughout this entire process Martin hasn’t been getting cuter and cuter.

Or perhaps that’s just the mommy in me talking.