Category Archives: Nuts and Bolts

Defiance

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The post titled “Guilt” was about me—my guilt. This post concerns Martin. Specifically, his unrelenting, unabashed defiance.

It has come to my attention that a child recovering from autism passes through phases of childhood on a delayed basis. For example, he might suddenly, at three years old, become fascinated with toys designed for an 18-month-old, either because that’s the point his development now has reached, or because he needs to return to some stage he missed.

Martin’s homotoxicologist, at the same time, has warned me that we need to expect some emotions during different phases of recovery, as toxins pass out of Martin’s system. Those emotions include anger, anxiety, vivacity, and—defiance.

I’m a first-time parent. I have no inkling at what age a neurotypical child hits a defiance period. I have, by contrast, pinpointed exactly when Martin does: now.

For the last five days or so (indeed, since right about when he started to emerge from the last month’s foggy funk), Martin has resisted everything. He won’t sit on the potty, which is usually his No. 1 pastime. If I suggest the shark pajamas, he wants the dinosaur pajamas, or the skateboarding-monkey pajamas, or the dogs-in-cars pajamas, or anything except the shark pajamas. He rebels against wearing pants. Pants! This morning he metamorphosed into a rabid hyena when I suggested that he have a bite of his favorite muffin.

The instant I managed to wedge a morsel into his mouth, the hyena fled and Martin returned, eager to inhale the rest of the muffin. Thanks, kiddo.

Martin’s therapists find this defiance development most exciting. “He’s really showing a greater sense of self!” “So encouraging, how he’s trying to assert individuality and parental separation.”

We live in a neighborhood with several private preparatory schools. (I’m not worried about giving too much identifying information, because “several private preparatory schools” describes 92.47% of neighborhoods in the five boroughs.) Earlier this year I found it hard to see teenagers from these schools hanging out in the deli, tossing a football, gallivanting the sidewalks, doing whatever teenagers do. “Oh,” I would think, “you think you’re sooooo special, just because you’re neurotypical. Big deal.” I was misplacing anger on kids who never had to struggle the way mine does.

Witnessing Martin’s nascent recovery brought me to a different place. The anger dissipated into something more like anticipation. Ten years from now, when Martin has become a hostile 13-year-old who rejects his parents in favor of friends, I’ll be able to relish the moment. I’ll think how close we came to never having a self-centered little jerk around the house, and how relieved I am that we managed to create one.

So it also shall be now with defiance. When Martin is tearing, pants-less, through the living room shouting No! No! No! at full volume—even though I haven’t asked him to do anything—I shall wallow in joy that we have reached a “greater sense of self” marked by “individuality and parental separation.” I shall celebrate reaching this milestone, belated or no.

I shall, I shall. I … promise … I … shall.

Saturday. Doctor, Therapist, Farm

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Until August, Martin attended school just for two hours per weekday. His new school runs more than five hours per weekday, with a decent commute on either end, to boot. Participating in CPSE also carries family responsibilities. We can’t willy-nilly yank Martin out of school, or decide that he’ll skip a day.

As a result, we now concentrate doctor visits and private therapies, when possible, on the weekends. We try to make family fun out of shuttling from one appointment to the next.

Today Martin woke around 7:45 a.m. (an extra 45 minutes’ sleep from school days). He and Adrian completed some RDI exercises while I assembled their weekend breakfast. Martin got squash “French fries” with kelp flakes and one duck egg fried in hemp oil with minced cilantro. Adrian got the same, but substituting a chicken egg and adding a slice of whole-wheat toast.

It was a lazy morning, and despite the early start we managed to leave late for our 10:30 a.m. meeting with Dr. Ingels, the allergist, near Union Square. Because we were setting out for the day, we took the car, which of course made us even later, our route blocked by firemen using their truck and ladder to remove their stationhouse’s window-unit air conditioners, and then by a moving crew marching across 23rd Street with mattresses. A bunch of mattresses. Dr. Ingels pardoned the untimely arrival, and we enjoyed a routine visit. Martin’s tolerance for malverine, piperine, and candida has increased.

From Dr. Ingels’s we headed north, to Pleasantville, for a 12:30 p.m. session with Martin’s HANDLE therapist, Katie. She is the chief proponent of accomplishing Martin’s recovery as gently as possible. We discussed ways to soften the process even more. I talked about Martin’s attention and language lagging this past month. Katie asked about Martin’s sleeping and body control, which actually (I realized) have during the same period been quite good. Attention and language are advanced functions, she reminded me. Sleep and control are building blocks.

We grabbed lunch at the Pony Express in Pleasantville and ate in the plaza by the train station. Martin had rice crackers and homemade white-bean hummus. He investigated some trees, ran to the fence to watch a train pass below, peered with interest at (but did not speak to) another little boy. Overall, he seemed better. I’m beginning so sense a return of his attention, since we reduced the Biosode from 1x dilution to 2x.

From there we moved on, even further north, to the highlight of the day (for Martin, and perhaps Adrian) and an onerous task (for me). We drove to Hemlock Hill Farm in Cortlandt. We had researched farms on the internet in search of one that was organic and came close to meeting my ethical standards. We need some meat.

Yes. Meat. We’ve decided to feed Martin limited amounts of meet, and see if it augments his recovery. The choice has been weighing heavily on me these two weeks or so, and I needed to have it over with.

So off we went to Hemlock Hill Farm. Adrian took Martin to wander among the chickens and geese. I entered the little shop the farm maintains, more or less a concrete room with refrigerated glass display counter, freezer, shelving unit, and a few display bins. A man behind the counter asked if he could help me.

“I need—some meat.”

“What kind of meat?”

I decided honesty would be the best approach and ’fessed up that I had no idea what kind of meat. I’m a vegetarian, I explained. My son has a medical condition, and I’m going to try preparing him some meat.

The fellow was friendly and patient. He showed me packaged goat parts and which beef cuts have bone in them. (I’m supposed to put bone in the crockpot for making broth.) He explained how I could differentiate meat of animals killed on-site from that of animals killed at a USDA-certified facility in Pennsylvania. (I didn’t want any flesh from animals who were transported before slaughter. Too cruel.) I read information on what the animals eat—primarily, grass and grain also produced in Westchester County, at another farm. I asked about quail eggs. The farm has had them in the past but did not have any now.

Finally I purchased two frozen shank cuts, bone in. Cow meat. I took a dozen duck eggs, too, saving myself a trip to the farmer’s market.

Then I went out to greet the animals. The ones still alive, anyway. The birds seemed happy and unafraid. Other than wire fences delineating the fields—ducks over there, chicken and geese this way—they have freedom to move about as they please and peck at the ground. The recent rains had left the area muddy, but I could imagine some serious dust bathing when our prodigal sun reemerges. The cows were grazing in a pasture some distance up the road, so I declined the farmer’s invitation to go meet them. She also invited me to hang around until the cows came home from pasture around 5:30 p.m. The day had already stretched long, however, and we needed to be getting back to the City.

Martin knocked off early this evening, exhausted from new HANDLE exercises and playing amongst the fowl.

My mind remains fixated on the cow meat now in my freezer. Tomorrow evening I will try to make a beef broth. I hope that I don’t fail and waste the flesh.

This new chapter will be complicated.

The Village Idiot Takes a Leap of Faith (and Some Track Two Practitioners Catch Her)

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The past three weeks or so, Martin has not been at his best, as I’ve written here in the blog.

Last Thursday I spoke by phone with Martin’s excellent Track Two doctor, who decided to slenderize the supplementation routine, in case we are overloading Martin’s system. She also asked a number of spot-on questions. “Has he appeared unnecessarily anxious during this time? Any increase in the teeth grinding?” My answers suggested to her that we might be experiencing some adrenal stress.

Yesterday we visited Martin’s homotoxicologist. I explained his spacey-ness and temporary backslide. The homotoxicologist said it sounded like too much Biosode, which is a homeopathic support formula Martin uses. Did his newfound symptoms by any chance correspond with an increase in Biosode?

I pondered the timing. Why, yes. I think Martin did lose his attention around the time that I moved from 2x diluting his Biosode to just 1x diluting.

The homotoxicologist ran some tests on how Martin’s systems are functioning. She pointed to a graph on the computer screen. “Look at that—seems like he’s got some adrenal stress, too.”

Just what the Track Two doctor had divined.

When we got home I shuffled through Martin’s daily log. Sure enough, on the page marked August 28, about three weeks ago, I found this entry: “NO CONCENTRATION (just a few days since Biosode increase?)–>tired, lethargic.”

When you are a parent dealing with autism recovery, it can feel like there’s a lot of hocus-pocus and guesswork swirling around you. And there probably is guesswork; autism recovery is only emerging as a field, so some degree of hit-or-miss seems inevitable. (Actually, in my understanding, hit-or-miss constitutes a substantial component of all medical practice. The Big Imposing Hospital doctors’ buckshot approach to Martin’s issues confirms that understanding.) Plus, everything is complicated. When I sit with the homotoxicologist, I listen attentively and nod like I comprehend her explanations. Really, all I’m doing is trying (1) to grasp the bare bones, enough to tell the Track Two doctor what the homotoxicologist is up to and make sure we’re all on the same page; and (2) to remember key concepts that I want to research later, to ensure my own comfort level with the process.

In other words, there is a degree to which I have to put my trust in these persons. They are the ones building this new science of recovery, and their understanding of autism and biology outpaces mine by light years. (In college, I fulfilled my core requirement with a course titled “Chemistry for Non-Science Majors.”)

Yes, everyone who visits a doctor instead of treating himself at home takes a leap of faith. But the leap is maybe somewhat more difficult to take when the very demand to have your child treated stands to refute mainstream medicine. By choosing the biomedical approach, I—the idiot in the village of science—am saying, “That whole mountain of physicians has got it wrong, and I believe I have got it right.”

Which means I’m pretty darn happy when the members of Team Martin—Track Two show that they do, indeed, know whereof they speak.

The Gentle Approach to ASD Recovery

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I referred on Friday to an email that Martin’s HANDLE practitioner sent me, on the topic of gentleness. Here’s part of what she wrote:

I got a little concerned about the September 5th blog entry.  Through all of this, Gentle Enhancement still remains a truth about recovery or healing. That’s the idea that a stressed system doesn’t get stronger. It’s not popular or common sense, but it’s still true and I have learned the truth of it over and over again in my work with clients. . . .

While I think you have mastered Gentle Enhancement when it comes to Martin’s HANDLE program, sometimes homotoxicologists and DAN Doctors need to hear from a parent who understands Gentle Enhancement. Less is more, even if it’s hard to swallow for them, or goes against their training. I encourage you to insist on it, whole-heartedly. He shouldn’t have days where he’s detoxing so much he’s foggy, sick, tired, or can’t sleep. He can’t afford to lose more days neuro-developmentally, and there’s plenty of time to detox as he becomes more relaxed and integrated.

Detoxification occurs naturally for the neurotypical person because we go into “rest and digest mode.” That’s the branch of the autonomic nervous system that’s opposite of “fight or flight” mode. If Martin’s treatments are causing him stress they are doing the opposite of what they are trying to accomplish. . . .  I’m suggesting that the process needs to happen so slowly that you barely notice.  That will truly be the fastest road to recovery.

Upon receiving that email, I decided I would like to post a few words about the gentle approach to treating autism, which reminded me also that I never revealed how Martin’s first round of laser energetic detox (LED) treatments went.

Katie, the HANDLE therapist, is right. Parents who have recovered their children have likewise warned me against moving too quickly, trying to do everything at once. I use the term “treating” autism. I could write more accurately. What we’re really talking about is healing. The goal of approaching Martin’s autism biomedically, as I understand the process, is to help his body heal. We’re healing his gut, driving out yeast and then viruses and pathogens. As his digestion and gut functioning improve, so too will his neuro-functioning, and we can try to guide him back to more typical development. For now, however, his gut troubles have weakened all his systems, and we seek to make them healthy again.

What Katie means is that if we are exasperating or otherwise overtaxing Martin’s systems along the way, his body will snap out of healing mode. I feel like Martin’s excellent Track Two doctor shares this understanding. We spoke by phone last week about Martin’s current “rut,” in which he’s been tired and echolalic, without much attention. The doctor reduced Martin’s supplements and decided to run some tests regarding adrenal stress, to make sure we are not doing too much at once.

The LED, which was the most “radical” of Martin’s treatments so far (Adrian and I did extra research before proceeding), was not harsh. It involved the use of mild lasers attuned to Martin’s vibrations in order to help him expel toxins. Martin enjoyed the process tremendously, because he got to jump on a mini-trampoline to get his blood flowing. We had the LED over two days, and when it was done and he was happy and feeling fine, I thought, “This is it? This is our most radical and controversial treatment?”

The Track One doctors warned me against a biomedical or DAN! approach to Martin’s autism. These same practitioners, however, never warned me against mainstream “treatments” meant to mask autism’s symptoms—treatments such as atypical antipsychotic medications.

I am bewildered by a medical industry that would sooner give brain-altering anti-psychotic medications to a child than encourage neuro-improvement through gut healing. I am bewildered by doctors who warn me against “vitamin overdoses” without once mentioning that a child whose autism remains unresolved may face a lifetime of gut pain, of sensory overload, of frustration.

Martin’s Track Two team has approached his healing slowly, concentrating on the whole child and his overall well-being. I cannot say the same for his Track One team.

On September 5 I referred to ASD recovery as “beat[ing] the daylights out of Martin.” We were doing too much. We’ve scaled back. That’s what gentleness is all about.

Track Two Versus Track One: Those Who Say They Can Help My Son, and Those Who Say There Is No Help for Him

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I’ve received inquiries about my use of the terms “Track One” and “Track Two” regarding Martin’s treatment and, especially, his doctors.

As far as I can tell, mainstream medicine maintains an official position that no cure for autism exists. There are behavioral therapies that can help a child on the spectrum cope with his disorder, and there are medications that mask symptoms, but research has found no effective treatment for the root cause, it is said.

After we received Martin’s diagnosis, almost a year ago, Adrian and I took him to what I refer to in this blog as the Big Imposing Hospital, a formidable New York-area institution with a good reputation for treating ASD—although I’m no longer sure what “treating” means in this context; “diagnosing” might be the better word. In any event, we pursued every avenue that the Big Imposing Hospital requested. Under the auspices of the department of developmental neurology, Martin visited (at least once, and sometimes repeatedly) a geneticist; an endochrinologist; an ear, nose, and throat specialist; a gastroenterologist; a nutritionist; a dermatologist; and a child psychiatrist. This was the team I now call “Track One.” Before Martin was diagnosed with autism, when we were trying to get to the bottom of his inability to settle down and sleep, he also saw a specialist in pediatric sleep disorders at the Big Imposing Hospital, who misdiagnosed him with “restless leg syndrome” and prescribed iron supplements that stained his teeth.

As we began to investigate ASD recovery, we found ourselves faced with a choice. On the one hand, we had Track One, an expensive high-profile team at the Big Imposing Hospital telling us that, beyond referrals to behavioral therapy and information for us to understand ASD, they could offer nothing to help our son. On the other hand, we had Track Two, a single doctor and collection of other professionals saying, yes, we have helped children recover, and we’ll do what we can for Martin.

The choice was not as clear as it should have been. I was skeptical. As I’ve mentioned before, in this blog, it’s hard to believe that mainstream medicine could be suppressing the fact that a devastating (yes, devastating) and increasingly common condition is treatable. So I did what a skeptical person does. I asked for references. I talked to other parents. I read whatever articles I could find. And then I compromised between the two positions. Adrian and I decided to pursue Track Two, i.e., biomedical recovery, but not to abandon Track One, i.e., to continue following the recommendations of the Big Imposing Hospital—other than the recommendation not to go anywhere near a Track Two doctor.

Every Big Imposing Hospital doctor we asked told us that seeing a DAN! practitioner would be a waste of time, and potentially harmful to Martin. I took careful notes on what they said could be dangerous: vitamin B overdoses, intravenous ketology, hyperbaric chambers. Once we had started biomedical recovery (and started to see results), I gave the Track One doctors a stock response, along these lines: “My husband and I have spoken with enough families who have recovered their children that we now believe research being done in labs and studies simply has not kept up with what’s going on in the field. We would never expose our son to treatments we believe might harm him, and we research each treatment thoroughly and appropriately before proceeding.”

For the most part, once they saw I was determined, and informed, the Track One doctors stopped arguing against biomedical intervention. Some dropped the subject. Others changed their tone and spoke about “exciting possibilities” or “forging a common path” with DAN! practitioners. One doctor at the Big Imposing Hospital told me, “I’m a scientist. I require results. The results are not there to support autism recovery.” When I offered my position about studies lagging behind field work, this doctor rose from her chair, shut the door to her office, lowered her voice, and said, “Again, I’m a scientist. But I have had enough parents come through here whose children have improved with dietary changes and supplementation that I can no longer honestly say autism recovery is not possible.” Then she opened the door again.

From that moment, I’ve wondered what else mainstream practitioners are hiding, and why. As Martin has made more and more progress with his Track Two team, Track One has faded into the background for us. I’m just not sure what they can offer at this point.

(Moreover, Martin’s excellent Track Two doctor simply seems to care more about him than anyone we met at the Big Imposing Hospital. But that’s a topic for another post.)

On top of all the Track One and Track Two, Martin still sees his regular ol’ pediatrician, who’s been his doctor all along. When I told her that we were pursuing biomedical treatment of his autism (and provided all the details, supplements, and so forth), she said, “I don’t know much about it, only what I’ve heard at conferences, which is that it doesn’t work.”

I started to give my stock response. The pediatrician interrupted me with a smile. “I’ve heard that it doesn’t work,” she said. “But I’m happy to be educated otherwise.”

Guilt

Posted on by findingmykid
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Here in New York, next weekend, Developmental Delay Resources is sponsoring a three-day course on “Having Healthy Babies: Outsmarting Developmental Delays”—i.e., autism prevention. According to the event’s publicity page, the course will be devoted to pre-conception health, carrying and birthing healthy babies, and post-partum health.

It sounds provocative, and I think that some members of Team Martin (therapists, nutritionist, &c.) are planning to attend.

I can’t go, though. No way. From an emotional perspective, learning at this point about autism prevention would overwhelm me.

Martin’s cranio-sacral therapist is some sort of intuitive healer. She knows things. On Martin’s first visit to her, she was laying her hands on him, concentrating, murmuring about what seemed to be going on inside his gut. Suddenly she called to me to join them. I knelt beside where they were working on the carpet. The therapist had one hand resting on Martin’s head. She pressed the other hand against my breastbone.

“There’s a void here, something missing,” she said. “You’re not connecting completely with Martin.”

Excuse me?

She continued, “You’ve got to get rid of the guilt you’re carrying about his birth. You’ve just got to let that go and tune into the here and now.”

I was stunned. I had described to her how Martin was born, but I hadn’t used the word guilt. Not about his birth, or anything else. Yet she knew, and knew that it was getting in the way.

Martin’s birth was a series of decisions I did not want. Martin came late to the party; in the 42nd week of pregnancy, against my better instinct, I gave in and let the doctors induce labor. From there, it spiraled. On pitocin, my confused body produced increasingly long, unproductive contractions, until finally it barely unclenched between them. The doctor decided we needed to relax me artificially and ordered an epidural analgesia, which I also did not want. After nearly 16 hours of artificially induced labor, Martin got stuck, sideways, and his heart rate fell. By the time they wheeled me into the operating room and cut him out, I was (unsurprisingly) running a fever, meaning that Martin, who was healthy and alert with an APGAR of 9, was whisked away to the NICU.

So those were Martin’s first days in this world. Instead of coming to us naturally and snuggling into the loving arms of his parents, he met a surgeon’s scalpel and then slept with strangers under the offensive, blazing halogen of a noisy NICU.

I know that environmental factors play a role in autism. I wear the guilt of Martin’s traumatic birth, of my decision to allow pitocin. I wear it like a heavy jacket, pounds and pounds weighing me down.

Was birth trauma related to autism? What is related to autism?

I never should have got caught up in the H1N1 hype and given Martin that unnecessary vaccine. Or most of the other vaccines, either.

We had our kitchen rebuilt while I was pregnant. I breathed that dust daily. Mistake.

I used my Blackberry. All the time.

If there is such a thing as autism prevention, then there’s something I should have done differently. It will be a long time before I’m recovered enough to discuss that topic.

Martin Shoves a Book Into My Nose But Then Takes It Away. Hurray for Martin!

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Church went well this morning. Martin had two toy trucks—with soft plastic wheels, which are quiet on the sanctuary’s stone floor—a board book, and a sippy-cup to keep him amused. I carried my mother’s ASD-recovery-compliant coconut macaroons, and deposited one into Martin’s mouth whenever he got too chatty. Martin was a vending machine of sorts: for payment of a macaroon, he dispensed several minutes’ silence.

During the hymn of the day I stood and held Martin in my arms. Martin, in turn, shoved his board book into my nose, blocking half my face and forcing me to bend backwards at the neck. It was terribly uncomfortable. I met Martin’s eyes and shook my head at him. Actually, I rolled my head slowly side-to-side, as best I could with my nose compressed against the book. In any event, I meant, No. Don’t do that.

My hopes were dim that such a simple gesture could stop the behavior.

To my surprise, Martin obeyed. He removed the book, glanced at my face, and turned his attention instead to the parishioners around us.

Thirty seconds later, we repeated the same sequence. Book into nose. Head-shake no. Martin understanding and complying.

This was nice, very nice. I checked off what Martin had achieved. He’d correctly interpreted a non-verbal gesture, even recognized that I was serious. (Most shakes of my head are greeted with his laughter.) He’d obeyed. I knew he wanted to continue shoving the book into my nose, because he’d done it again. But then he’d obeyed again. Hurray for Martin.

The closing hymn, appropriate for 9/11, was This Little Light of Mine. The congregation sang slowly at first, then gained speed until everyone fired up and clapping. Martin stood in front of me. I held his arms above his head, helped him sway and dance. He was ecstatic. He looked around himself and up at me (joint attention!), his face contorted in smile. He shouted, “I’m gonna let it shine, let it shine, let it shine!”

We were on top of the world.

Of course, you can’t live in the real world and also be on top of it. At least not for very long. After church we needed to drive to Brooklyn. Fearing 9/11 street closures, we opted to take the Manhattan Bridge instead of the Brooklyn Bridge. This slight deviation from routine sent Martin into a frenzied tantrum, worse than we’d seen in months. I tried distracting him, making stern faces, ignoring, placating, hugging, to no avail. Martin was hanging out in that ASD place where every journey admits but one route.

When the tantrum was done, Martin returned to top form. We drove home and he accompanied Adrian to the park, charming and obedient. I resolved not to let a single blemish taint a magnificent day.

This little light of his, we’re gonna let it shine.

ASD Recovery Six-Month Review: Behavior

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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

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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

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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.