Tag Archives: autism

If Only I Had Decent Answers

Posted on by findingmykid
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Is Martin curious?

When Martin was a toddler, when his autism had emerged but Adrian and I did not yet recognize it, I thought he was curious about mechanics. He spent hours staring at mechanical devices. I don’t mean that as hyperbole; unless someone intervened, Martin would stare without stopping, for however long we left him. If I wanted to make dinner, I could push the upright vacuum into the middle of the living room and count on Martin to remain, indefinitely, within 36 inches of the appliance, circling to see from different angles, lying down with his head by the wheels. On the street, the only time I could be confident that he wouldn’t bolt was when we had an excavator or backhoe or other piece of heavy equipment to look at. Then he would stare. Stare. Stare.

You ask, How did we not recognize autism? I answer, First-time parents. Give us a break.

After we started autism recovery, Martin stopped gazing at mechanics, and his echolalia (which had been his lone form of spoken language) eased into perseveration. At that time, I probably would not have called Martin curious. His mind got into ruts, and he asked the same question repeatedly. He seemed uninterested in what was new. How could a boy who stuck to one topic, for weeks, be called curious?

Still, we were grateful for what we’d got. At least he put together the sentences, and later questions, on which he perseverated. That’s a step up from echolalia.

Martin still perseverates today, though less. He cycles through topics of interest. We’ve spent the last couple months on street signs. He wants to know everything about street signs. Why does the sign for “playground ahead” have only a see-saw on it? What is a shoulder? Why can’t you drive on it? Mommy, slow down! There’s a speed zone ahead. Before street signs, Martin was into phases of the moon, and facts about the moon. Before that, musical instruments.

Despite the perseveration, Martin’s real, natural curiosity is starting to make itself known, through his ever-increasing language skills. In the last few weeks, I’ve heard questions like these:

In the car, as “Fire and Rain” comes on the radio: “Mommy, what is James Brown signing about?”

Upon finding out that I would be gone for four days to attend a conference (A1!) in Chicago: “What is the conference about?”

Looking around my home office, and realizing that I have portraits of three deceased cats on the wall, when in fact I’ve had not three but four pet cats who’ve died: “Why don’t you have a picture of Tiny Rachel on the wall?”

On a lazy weekend morning, after he climbed into bed with me and Adrian: “Mommy, why did you decide to marry Daddy?”

I’ve been ecstatic about each such question. I do, however, need to add a caveat: Sometimes Martin doesn’t really listen to the answer I give him. Sometimes he poses the question, then interrupts my answer to ask another question or introduce a new topic. When that happens, I wonder whether he’s actually being curious, or whether he’s just trying to control the situation (this happens) by having me answer his choice of question. Ah, well. It is what it is.

Hey, are you wondering why I don’t have a portrait of Tiny Rachel in my home office? Tiny Rachel was my first cat. I adopted her, all five pounds of her, just after I graduated college. She saw me through my first master’s degree, law school, a total of 13 apartments, work, cohabitation, marriage, my second graduate degree, and finally, pregnancy. Tiny Rachel was whip-smart, and full of piss and vinegar. She hated everyone but me. She died three months before Martin was born, and I think she surrendered some of her spirit to him. I’ve never really been able to admit that Tiny Rachel is gone. It’s been seven years. I need a few more before I can hang her portrait.

I See Your Napkin Hand-Off, and Raise You a Call for Pajamas

Posted on by findingmykid
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Sunday morning, I lay clothes upon Martin’s bed and told him to get dressed while I showered.

Ten minutes later, after my shower, I found Martin his room, fully dressed except for socks. “Hey, what about these?” I asked.

He grabbed the socks and scampered away.

“Wait!” I called after him.

He had left his dirty pajamas on the bed. He knows that dirty clothes belong in the blue laundry basket in his bathroom. I gathered the pajamas and stepped into the hallway. Martin was 15 feet down the hall, on the floor outside his bathroom, pulling on his socks.

“You left these dirty pajamas on the bed,” I said. I wanted him to get up, walk back to me, and take the pajamas.

Instead, he kept his butt on the hardwood floor, reached his hands toward me, and danced his fingers in the air. All the while, he kept his eyes on me.

His request was obvious. The gesture was obvious. Throw them to me, he motioned. Throw me the pajamas.

Straight-up, flat-out nonverbal communication. No doubt about it.

Right away I remembered the day four years ago—before Martin could follow eye gaze or pointing, before a nick of the chin one direction or another meant anything to him—when Martin comprehended a nonverbal cue and dropped his napkin into my hand. We were a year post-diagnosis, then, and I was so pleased that he’d understood what I wanted.

Look at him now. Sitting there (literally) and motioning for me to throw him pajamas, as if it’s nothing. As if nonverbal communication is nothing at all. Sure, we may be five years into the arduous recovery, we may have our ups and downs, we may be clawing our way out of quicksand into fog, but look at him now.

I threw the pajamas at Martin. They hit him in the face. (Catching skills? Not quite there yet.) He giggled and still didn’t get off the floor. He kind of scooted and crawled into his bathroom, dragging the pajamas, and deposited them into the blue laundry basket, then returned to the task of pulling on socks.

’Atta boy.

Martin behind Adrian, on a walk near our home. Learning, I suppose, to follow.

Martin behind Adrian, on a walk near our home. Learning, I suppose, to follow.

Autism One Take-Away II

Posted on by findingmykid
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In my last post, I enumerated my “for discussion” points from Autism One, the ideas that caught my interest but that I need to discuss with Martin’s doctor before I take any action.

In this post, I address two plans for immediate implementation: composting and EMR control.

I’ve had composting on my mind since we moved to the suburbs two years ago. Composting never made it past the good-intentions stage because I wasn’t planting. Composting may be generally beneficial, from an environmental standpoint. From a realism standpoint, I’m not going to do it unless I have a use for the compost. I mean, I’m not going to compost and donate the result. At least, not while I’m in the thick of fighting autism. Maybe someday, when Martin has recovered.

This spring, for the first time, I planted. I assembled an elevated, cedar garden box, in which my arugula, kale, and marigolds (co-planted for natural pest control) are thriving. I also started three “Grow Boxes,” which I’ve had since before we moved from the City and never used. (Trepidation. I haven’t been able to discover exactly what goes into the grow-boxes’ built-in fertilizer, and I have a bias against the boxes being plastic. So far, in any event, the crops in the cedar box are doing much better than those in the plastic grow-boxes.) All the seeds were organic, of course, and I also purchased (not cheap) organic soil.

In one of his A1 presentations, Dr. Zach Bush talked about the introduction of nitrogen fertilizer after World War II, the more recent introduction of glyphosate and other pesticides and herbicides, and the resulting loss of soil biome. I think a lot about human biome, especially since Martin was born by unplanned Caesarian-section and then given antibiotics. I’ve never really thought before now about the soil biome. During his presentation on The TDOS Syndrome, Peter Greenlaw argued that food, as we have altered it, is not longer “enough” to nourish us. Tomatoes have less lycopene, spinach has less iron, carrots have fewer vitamins, and so forth. We eat all the calories and then, still missing nutrients, we crave more, leading to obesity. These ideas clicked. Since I’m growing vegetables on the homefront now—I’m about to step outside and harvest a salad for dinner—I ought to insert as much nutrition into them as possible. Won’t my organic vegetable waste make ideal compost for that purpose? Plus, the very cool plumber who came recently to fix a burst pipe told me that my township offers outdoor composting kits to residents for just $50. Composting, here I come.

As to EMR, we have taken precautions already. EMR, or EMF’s, were a primary concern when we decided to move out of New York City. In our old apartment, in the city, when I ordered my computer to search for wi-fi, it routinely found two or three dozen networks. Two or three dozen! That means Martin, at home, playing, or sleeping, was bombarded by wireless frequencies. And when you live in a building with seven other families, surrounded by more buildings with more families, those signals come through pretty strong. We resorted to draping a tent of EMF-blocking fabric around Martin’s bed, with yards of the same fabric under his bed. Also, his bedroom was so tiny that his bed fit only against a wall with electrical outlets near his head and feet, or else alongside a floor-level window through which came the room’s highest EMF levels. We covered the window with clear EMF-shielding film and put the bed there. That was the best we could do.

In our new (not so new anymore) suburban homestead, we are less constrained. We have more than an acre, on a shoreline. As a result, when my computer searches for wi-fi, it finds only two networks, ours and the weak signal of one neighbor. Before we moved in, our contractor—who is the husband of Martin’s nanny, Samara, and knows why we do the things we do—applied grounded, EMF-shielding paint underneath the regular paint and even the floorboards (basement modem) in Martin’s bedroom. That bedroom is large enough that we can situate his bed away from wall outlets. We bought this house, instead of another we considered, after an environmental review of each showed the winning house to harbor lower EMR. (The other house was near a water tower; EMR travels along water pipes, and higher pressure means more EMR. Also, the main water line into that house ran diagonally under most of the main floor, creating an unavoidable field.) Along with those precautions, we don’t have cordless phones at home. So we’re off to a good start.

Here’s what more I can do:

* I never had Martin’s current bedroom windows coated with clear EMF-blocking film, even though we still have a supply of the product. I suppose I haven’t wanted to mess with his room’s view of our yard. Well, tough. For the time being, recovery trumps view.

* We have one basement water main that our consultant recommended wrapping to offset EMR transmission. With the other renovations and general chaos of moving, that never happened. It’s time.

* Adrian loves giant televisions. He is, after all, a guy. In our family room is a 65” LED television that gets turned on, maybe, twice a week, for Adrian to watch news or historical documentaries. (With my hockey and soccer and tennis and football, I am the bigger TV-watcher. I watch mainly in the kitchen, while I cook.) Once upon a time, back in the City, I turned off the power strip that fed our TV, cable, and stereo system, trying to cut ambient radiation when the devices weren’t in use. Then I discovered that if you cut power to a cable box, it takes five minutes or more to reset when you reconnect the power. On those rare occasions when Adrian wanted to watch TV, he faced a frustrating delay. So I devised a system by which everything except the cable box was fed by one power strip, and cut that power strip unless we were using the TV or stereo. Now we have “Smart TV” in our family room. I need to experiment and find the best way to cut power when not in use, without much delay upon restarting. Bonus: Savings on our electric bill.

* That stupid microwave. Years ago I stopped microwaving. Since then I’ve read conflicting information on whether microwaving really affects food properties. But nutritional value notwithstanding, microwaves emit EMR’s. I’ve still got one in my kitchen. It’s a built-in model that will leave a hole if removed. Mostly, I use it as a timer, because its timer feature is more convenient than my oven’s. Occasionally, I give in to temptation and nuke food: lentil stew for Adrian to take to the office, a vegetarian sausage for me to when the others are eating fish, even Martin’s broth when he’s let it go cold and the fat has coagulated. Why? No good reason. I’m going to find a way to unplug the thing. I will leave it in the custom cabinet, or ask our handyman if he could convert the space to something useful and attractive.

Ÿ* Get this: More often than not, I leave my computer on overnight. At some point in the evening, I abandon my laptop in order to attend to something else, like preparing meatballs or Adrian’s lunch, or driving home from the pub where I blog. (Ahem.) I think, I’m not going to shut down. Maybe I will want to use my computer later and accomplish many amazing feats. Which I never do. I go to bed, and my laptop sits unmolested, shooting and receiving EMF’s. Nice.

Ÿ* Did you think that was bad? My computer? Wait for it: Adrian leaves his iPhone—charging—powered on—next to his pillow. Just like that, he earns infamy as worst household EMF offender. He likes to use the iPhone as an alarm. He likes to be completely up-to-date on work email if he checks during the night or first thing in the morning. He likes to melt our brains. This doesn’t affect Martin, at least not as much as other household wi-fi crimes. But still. I’ve got some needling to do.

Ÿ* Overall, I may be able to make the biggest difference in Martin’s classroom. As luck would have it, two other mothers from Martin’s class—he attends a school for children with speech and language delays, many of whom also have autism—were with me at A1 and share this sentiment: We need to convince the school to do better with wi-fi. The entire school is wi-fi enabled, and every classroom has a SMART board. We probably can’t change either of those facts. Maybe we could fundraise and get EMF filters into the classrooms, or implement a policy for teachers and assistants to shut off mobile phones while inside.

We also considered trying to get the school to do better with food, but that seems more challenging. Because so many kids have food allergies, students may eat only what they bring from home, except during parties and special events. During parties and special events, no home-baked goods or even fruits are allowed. The choices are plain pizza (which I like to call “one dish with everything an ASD kid shouldn’t eat, plus almost no nutrition whatsoever”) or items from the “Snack Safely Guide” (“sugar-laden processed crap”). Ergo, during parties and special events, Martin and the other boys whose moms were at A1 have to bring their own snacks. We would love to convince the school to let us bring healthy treats for all the students. We’ve tried before. Regrettably (in my opinion), paranoia over food allergies wins the day.

Referring to “paranoia” over food allergies is in no way meant to minimize the challenges faced by our friends in that community. I know that we need to take precautions to ensure the safety of those who risk anaphylactic shock from accidental ingestion of allergens. On the other hand, it appears sometimes that, rather than doing the hard work of tailoring policies, schools prefer to blanket the food supply. Not one student in Martin’s class has an allergy to peanuts or nuts, and because of the lunchroom’s small size, his class eats together with only one other class. Yet I cannot send sprouted almonds as a snack, because the entire school is nut-free. I would much rather work with the school to devise a plan that meets the students’ actual needs, and addresses the non-nut allergies that some of them do have.

How about turning our own wi-fi system off at night? That’s usually the first step holistic doctors and EMF consultants suggest. Yet it would be the hardest for me to take. Adrian works long hours. Now that we live outside the City, we wanted to make provision for Adrian to work some days from home. He hired a network expert to enable his home office, complete with phone tied to his Manhattan office line, cable phone, and wi-fi portals. The system is so complex that it doesn’t lend itself to being shut off without significant warm-up time upon restarting, along with the chance for snafus. It’s becoming a pick-your-battles issue for me. The EMF-blocking paint in Martin’s bedroom helps. What trace EMF’s still hit him at night are offset by Adrian’s ability to work conveniently from home.

Gotta go. Lots to do.

Martin doing his thing at a playground. I look at this big, big kid and think, "Is he really mine?"

Martin doing his thing at a playground. I look at this big, big kid and think, “Is he really mine?”

Autism One Take-Away I

Posted on by findingmykid
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I’m traveling home from three-and-a-half days at Autism One, the annual conference on all things recovery. This marked my fourth year in attendance at A1.

I go to A1 to learn about the latest treatments and studies, to check out vendors whose products might benefit Martin, to socialize, and to benefit from other parents’ experience. In those regards, I get a lot from A1. Every year I come home reenergized, and with new ideas and persepectives.

The downside of A1 is an overwhelming experience that also leaves me distrustful of many practitioners. Every doctor (or scientist, or therapist, or homeopath, or naturalist, or spiritual healer, or garden-variety snake-oil salesman) brings along a testimonial in the flesh, some family profoundly helped, or even fully recovered, by that one treatment that only this practitioner offers. Dr. Jeff Bradstreet and his team push the Bravo yogurt product with GcMAF to restore the immune system; Dr. Zach Bush and his team swear by Restore liquid, which will provide the nutrients missing from today’s food supply and which, by the way, should not be used alongside Bravo yogurt. Entrepreneurs display stickers and pendants for EMR protection, while authors lecture on why stickers and pendants can’t protect from EMR. One guy was at last year’s conference pushing acupressure devices and magic salt that he claimed “many doctors, at least two dozen” in attendance already were using. (When I pressed, he wasn’t able to name any of the many doctors.) That same guy was back this year, with the acupressure devices and magic salt, and now also with some sort of machine for shaking people. Shake those toxins right out! I could hardly keep myself from laughing when I passed his booth.

My strategy for maximizing A1 is to make note of treatments and therapies that sound most applicable to Martin, ask other parents what they know, and then take no action other than creating a list to discuss, at our next appointment, with our MAPS doctor. I include “take no action” because it is very, very tempting to leave A1 and immediately make appointments with every doctor (or scientist, or therapist, or homeopath, or naturalist, or spiritual healer) that I’ve just seen. A1 embodies hope, which floats through the conference and lands on me: That doctor’s research into mitochondrial processing disorder is so thorough, so cutting-edge. If I just take Martin to that doctor’s office in Arkansas, I’m sure we could finally solve his mito issues. And that other doctor’s clinical trials with subcranial laser therapy show so much promise. If I just take Martin to that doctor’s office in Atlanta, I’m sure we could bring his receptive language up to his expressive. And those homeopaths in Minneapolis are making their own remedies. And that chiropractor in Chicago can improve attention through posture. And that naturopath in Connecticut has a more sensitive test for allergens.

You get the idea. Our MAPS doctor is educated, up-to-date, and less bandwagon-y than I am. She can help me sort it all through.

So here I sit (on an airplane, again) reviewing through my notes to write this list, which I will email Martin’s doctor before our appointment next month. This list might give you an idea of what we’re yet to try, and why I think it might help:

Diet.

Martin’s diet remains more or less the GAPS diet, modified with sprouted quinoa, sprouted buckwheat groats, and on summer weekends when we’re grilling, occasional organic potatoes or sweet potatoes. Now I’m thinking more about salicylates, which in plants occur as natural compounds to ward off bugs and disease. Symptoms of salicylate sensitivity include meltdowns, red ears, bladder incontinence, and distractibility. I’ve never paid any attention to salicylate levels in Martin’s diet. Maybe his red ears, clustered meltdowns, ongoing struggles with bedwetting, and trouble attending mean I should start paying attention.

Thyroid.

Dr. Raphael Kellman presented on the importance of expanded-panel blood testing for thyroid regulation. I know that our environment today is rife with endocrine disruptors, and that Martin, many moons ago when we did more mainstream “Track One” testing, exhibited low T3 hormone. What caught my attention in Dr. Kellman’s lecture was his emphasis on the thyroid’s role in regulating mitochondrial activity, and his opinion that addressing hypothyroidism in conjunction with mitochondrial disfunction produces synergistic effects. That being said, I spoke with at least one doctor who opposes treating hypothyroidism (i.e., with drugs) instead of using non-pharmaceutical gut biome restoration to lead naturally to hormone rebalancing.

The aforementioned Restore liquid.

Dr. Zach Bush talked about the loss of soil biome and resulting nutrient void in our contemporary food chain. He discussed how this makes children vulnerable to tight-junction injury (at a time when tight-junction toxins are on the rise). Then he made the case for Restore, which apparently is based on the carbon “snowflakes” from older, unadulterated soil and can help restore the tight-junction connections. Sounds good. On the other hand, I find myself suspicious when a doctor gives a convincing lecture on what’s missing from everyone’s diet, and how its absence affects immune-compromised children, and then the remedy for that deficiency turns out to be a product that this very doctor developed and sells. Ah, c’est la vie. I suppose everyone has to earn a living.

The aforementioned Bravo yogurt.

Bravo yogurt seems to be in some way created, or at least championed—what do I know?—by Dr. Bradstreet and his colleagues, including Dr. Marco Ruggiero. Dr. Bradstreet, over two lectures, presented something he calls the “Bradstreet-ESSENCE Protocol,” which seems to be shorthand for an individualized approach to treating ASD and, in that regard, not so different from what many MAPS practitioners already do. (ESSENCE stands for Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Exams and is the brainchild of Dr. Christopher Gillberg.) A key component of this Bradstreet-ESSENCE protocol is the consumption of Bravo yogurt with GcMAF. I think Dr. Bradstreet has some interest in Bravo yogurt, so see my comments above regarding Restore. I think maybe Dr. Ruggiero has some interest, as well, and Bravo also figures into what he calls his “Swiss Protocol” for treating ASD. Howsoever those interests come down, last year, when GcMAF was available in injectable form, I was interested, with trepidation. Yogurt seems more palatable. Is that a pun?

Writer Peter Greenlaw, who also presented at A1, on his book The TDOS Syndrome, attributes today’s obesity crisis to lack of nutrients in our food, noting for example that spinach today has something like 1/92 the iron of spinach from 50 years ago; we get all the calories with less of what actually fills and nourishes us. That sounded exactly like what Dr. Bush was saying, except instead of pitching Restore, Lawton advocated the Bravo yogurt. Lawton seemed to be good friends with Dr. Marco Ruggiero, who is Dr. Bradstreet’s collaborator. I wanted a map of who works with whom and who shills for what, like those handy charts of which conglomerate owns what food companies.

MRT.

Dr. Bradstreet pushes magnetic resonance therapy, hard. I took an interest in MRT last year, when he, along with Dr. Ruggiero and others, presented the results of a pilot study that seemed almost too good to be true. I remain interested still, but it needs extra-careful consideration based on the cost, which is $1,000 for a trial to determine whether Martin is a “responder” and $12,000 for a full course, plus the expense of traveling to and spending weeks near one of two Brain Treatment Centers where the therapy is performed. In addition, Martin has a 12-month IEP and placement in an outstanding private school. If we were to take him from school for 12 weeks for a full course of MRT, we would jeopardize his spot in that class.

Mitosynergy.

The creator of this product gave a technical presentation centered on hydroscopic, or as he called it, “proper” copper versus hydrophobic copper, and copper’s ability to donate or accept electrons as needed, a key factor in molecular electron nutrition. (He moved fast, and I didn’t understand all of what he said.) I’ve had Martin on MitoSpectra for more than a year and have been wondering whether it’s time for a change. I saw the Mitosynergy product last year but felt that it was too new to the market to try. Maybe now?

Wider allergy testing.

This doesn’t relate to a specific protocol, and my interest didn’t arise through any particular lecture or discussion. A lot of what I heard at A1 regarding autism phenotypes, and getting recovery to “stick,” got me wondering whether I really have an adequate handle on dietary and environmental allergens that might affect Martin. Years ago, we worked through a food desensitization course with a naturopath. We didn’t do IgG food-intolerance testing. Is it time?

We see Martin’s MAPS doctor, in California, in four weeks. Anyone want to guess how much of this list will remain after I talk to her?

Autism One side-note: Whoever schedules the lectures at A1 somehow knows precisely what will interest me, and packs those lectures together. As a result, some hours I’m picking from among four talks that I’m dying to hear, trying to convince friends to go into the three I don’t and then share their notes with me, and some hours I’m listening to a presentation on language software for children with Down Syndrome because I don’t have anything else to do. Shoot me an email if you need to know anything about language software for children with Down Syndrome.

In Hope, Acknowledging the Despair

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Remember last week’s post so long it required subheadings? Remember the subheading “Whence My Anxiety?” and how I described the City Kids Club rejecting two-year-old Martin? Remember yesterday’s post, which was a follow-up to the post so long it required subheadings? Okay. This is another follow-up to the post so long it required subheadings, and specifically a follow-up to the “Whence My Anxiety?” section.

Done with introduction/explanation. Thanks for your patience.

It was summer 2010, around Martin’s second birthday, when Adrian and I realized something was “off” with Martin. If you read this blog, you probably don’t need details about autism’s warning signs: lack of attention, inability to follow simple directions, nighttime wakefulness, daytime exhaustion. In September 2010, an old friend of mine, an Early Intervention provider, traveled from my hometown to the City and helped us complete an M-CHAT (modified checklist for autism in toddlers) questionnaire, which she evaluated. (As it turned out, my friend didn’t really need the M-CHAT. After ten minutes just interacting with Martin, she knew that he almost certainly had autism.) By October 2010, we had begun the process of formal diagnosis and enrollment in EI.

I remember autumn 2010 as a time of Martin not really regressing, but slipping. The symptoms moved from “something off” to “obvious.” He lost all eye contact. He no longer responded to his name. His communication skills stopped developing. He drifted the perimeter of our apartment, dragging his fingertips along the wall as he hummed to himself. What we’d once called Martin’s “happy dance”—running circles around our open staircase when Samara arrived—became instead a self-stimulatory ritual beyond his control, ever more circles, ever longer, until finally he’d collapse into a lethargic slump and spend the next hour on the floor, pushing a toy back and forth.

We began changing Martin’s diet in January 2011, and started biomedical interventions in February. The initial progress was so swift that I thought we’d be done with autism within a year or two. Within months, Martin was sleeping through the night, and we the first seeds of functional, i.e., non-echolalic, language were sprouting.

For September 2011, seven months after we started biomed, we were able to secure a spot in one of the City’s preeminent special-needs preschools. Stop your giggling. It’s New York City. We compete for special-needs preschool placements, of which the City has far too few. Martin was placed into a bilingual (Spanish/English), 12-1-1 (12 students, one teacher, one assistant teacher) classroom. It was a stretch, we knew. The instructors from Martin’s EI center said he needed a smaller student-teacher ratio than 12-1-1. Adrian and I figured, however, that Martin was getting better, and that soon he would be able to function in the 12-student class, and that in any event, the only spots still available in preschool were in the bilingual, 12-1-1 setting. So we took the spot, with gratitude.

From the beginning, Martin’s classroom teacher reported problems. The other kids could follow one-step directions, at least, and already were learning to cut with safety scissors. Martin followed no directions and melted down when it was time to transition activities. The other kids were fully toilet-trained, or well underway toward that goal. The other kids could watch short films. The other kids could walk to the classroom by themselves. Martin—Martin was himself. Very soon we began to hear murmurs that Martin might need to change classes.

The hammer fell a few months later. Adrian and I were called to a meeting with the teacher and administrators. Martin could not handle a 12-1-1 classroom. Fortunately, the school now had a spot available in an English-language, 8-1-2 classroom (eight students, one teacher, two assistant teachers). Martin would be moved slowly, spending short periods of time in the new classroom, and then half days in the new classroom, and finally saying goodbye to his 12-1-1 friends.

Martin’s removal from the 12-1-1 classroom ranks second in the painful moments I’ve experienced on this journey, behind his rejection from the City Kids Club. To be sure, the 12-1-1-to-8-1-2 classroom move is a distant second. The preschool wasn’t kicking Martin out; they were thoughtfully placing him in a setting to meet his then-current needs. And I was more prepared. I’d had weeks to internalize this possibility, and didn’t even need to reach for the tissue box someone had put on the table at our meeting. Still, the decision forced me to acknowledge that Martin’s recovery was not going to happen as fast as I’d thought, and that after the rapid initial progress, his improvement had slowed. His needs were still great, more extensive even than the needs of most preschoolers in special education.

Also on the Top 10 Most Painful Moments List? Touring private special-education elementary schools, trying to find an appropriate kindergarten placement for Martin, and hearing repeatedly that while dyslexia, learning disabilities, dyspraxia, &c. were acceptable, children with “autism and other global delays” should not bother to apply. Let’s not go there, this post.

I was already blogging when Martin changed preschool classes. I didn’t write about the event, at the time, because it was too painful. Later, when autism’s grip had loosened a bit more and I was feeling better, I decided to write about it. I meant to write about it. But I didn’t. For whatever reason, I still couldn’t get there.

So what’s going on now? Why am I dragging these dark moments onto the internet for all to read?

It’s because of hope. Martin right now is living a bold season for recovery. Language, good. Sleep, good. Health, good. Attention, improving. Socialization, improving. Physical skills, improving. I am surfing an wave of hope. Full recovery seems more possible than it has in years. More possible, maybe, than since the 12-1-1-to-8-1-2 switch.

I might regret reviving, here on the blog, our journey’s lowest points. Wind, you can have my caution. I’m overjoyed for the confidence to share.

And Then, Martin Does the Rejecting

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You know, from last week’s post, that Martin has started participating in mainstream gymnastics. His class meets Thursday afternoons at our local JCC.

I also mentioned, in that post, that Martin attends a three-hour special-needs program at the JCC on Saturday afternoons. The Saturday-afternoon affair is a mixed bag: The kids swim, cook, do arts and crafts, and play outside, and those in attendance have a wide variety of challenges, from autism to cognitive impairment to hyperactivity. Martin has participated for almost two years. He’s always seemed to enjoy himself.

Last month, on a Saturday, two days after his first Thursday gymnastics class, Martin said he didn’t want to go to his JCC program that afternoon. At first, I thought he didn’t want to go because Adrian and I were both home and the weather was nice. I was planting my organic greens while Martin played on his swing set and Adrian worked. Martin had seen me prepping vegetables and fish to grill, and he might have thought that he would miss a cookout if he left. (The food was for family dinner that evening.) “Don’t be silly,” I told Martin when he said he wanted to stay home. “You love going to the JCC.” Still he persisted. Still I thought that he was just reluctant to leave a lazy Saturday in our yard, and that he would be eager when we arrived at the JCC.

He wasn’t. He walked in with me, and even hugged his friend Will hello. Then he grabbed my waist and begged me to take him home. I try not to give in to Martin’s activity whims; if I did, we’d be forever paying for lessons that he doesn’t use, for classes that he wants one week and not the next. So I tried to leave the classroom. Martin, in very un-Martin-like fashion (these days, anyway), started to cry. I asked the instructor whether anything had happened to make Martin uncomfortable. No, she replied, not that she could recall. I thought back to the previous Saturday. Adrian had picked up Martin and brought home a cheerful boy. No apparent issues. Now Martin kept crying. Eventually I did leave, without him. I snuck back and peeked in his group’s room. He was sitting on the floor, playing with a toy intended for a baby, pouting. He looked as miserable as mysophobia in a dumpster.

I phoned Adrian from the car. Was it possible Martin had a bad experience at the JCC? Had someone hurt him? Was I wrong to leave him there?

No, Adrian opined. We’ve never seen any indication of that. Martin is always in a good mood when we pick him up. He’s never appeared frightened or abashed. Plus, there are so many staff members present that he’s never alone with anyone. He just didn’t feel like going. Stop worrying

Indeed. When we returned three hours later, Martin admitted he’d had a good time.

The next Saturday, two days after his second gymnastics class, Martin again said he didn’t want to go to the JCC. In this encore, the tears started earlier, before we left home, and Martin was more insistent still. He did not want to go to his special-needs program. Adrian and I got Martin calmed down, and asked why he wanted to stay home. The conversation went something like this:

Adrian:           Martin, listen. We know you don’t want to go. Can you tell us why? Did something happen at the JCC?

Martin:           Because I don’t like it there. I don’t want to go.

Me:                But, Sweetie, you’ve always loved going to the JCC. You have fun there.

Martin:           I want to go to the gymnastics class on Thursday.

Adrian:           You go to both. You don’t have to pick. You go on Saturday afternoon, and then again for gymnastics class on Thursday.

Martin:           I just want to go to gymnastics class. I don’t want to go on Saturday anymore.

Me:                Why not?

Martin:           Because I don’t like it.

You get the idea. It was a frustrating conversation. Nevertheless, two themes emerged: First, Martin had no problem with the JCC. To the contrary, he was anxious to go back on Thursday to his gymnastics class. For that, I was relieved. At least I could stop worrying that he’d had some negative experience or been accosted by a staff member or any of the other random horrors that float incessantly through my motherly head. Second, since he started the gymnastics class with typical kids, for whatever reason he did not want to return to the special-needs program.

As it was the second week in a row, and Martin was more determined than we’d ever seen him about anything, we agreed to let him stay home. Even after we affixed conditions to the deal—no iPad, no snacking before dinner—Martin accepted.

Adrian and I speculated what might be prompting the change of heart. Now that Martin was participating in a “typical” class, was he starting to understand the difference between mainstream and “adapted”? Did he want to identify himself more with the typically developing kids? Was he rejecting his special-needs peers? Or having experienced gymnastics, was he no longer so into the less-challenging fun program? Was he just spending too much time at the JCC?

By coincidence, the first Saturday that we let Martin stay home, Jenny was observing the JCC’s Saturday-afternoon fun program. Jenny is the facilitator who takes Martin to Tuesday-afternoon Kids’ Klub at our church, and also is a graduate student in special education, and the observation was an assignment for her course work. Later, after her observation, I asked Jenny for her thoughts on Martin’s wanting to stay home. Jenny said it might be a combination of factors. She noticed that the kids with more challenges in the Saturday-afternoon program kept the instructors busy, and so Martin and some of his higher-functioning (ugh! that expression again!) peers were left to their own devices. She also said that some of the kids had behaviors that might be agitating Martin, and that the room got busier and nosier than Martin is used to otherwise.

Jenny’s opinion, based on her experience at the JCC special-needs program and our church’s mainstream program: half and half. Half, the myriad special needs and activities on Saturday afternoon are not what Martin is into right now. Half, Martin wants to be more like the typically developing kids in the church club and the JCC’s gymnastics class.

My response? Half and half. Half, I am sorry if Martin has started rejecting the special-needs community of which he’s been a part for years. I want my son to be happy to play with any child, whatever his or her challenges. Half, I am bubbly-giddy if, in fact, Martin sees himself as typical and the mainstream kids as his peers.

Bringing Out His Best: Another Post of Subheading Length

Posted on by findingmykid
8

Playing Down

We used to have Martin in “adaptive” (special-needs) soccer and karate.

The soccer group comprised six kids, ages six (Martin) through 12, and even more coaches and volunteers. Basically, each kid had a dedicated volunteer, and on top of that were a coach and an assistant coach. The coaches were energetic special-needs professionals who’ve obviously been doing this work a long time. The volunteer assigned to Martin was a patient high-school kid willing to work hard to get Martin moving. The lessons took place in a well-equipped indoor sports facility, on a Saturday morning, which is an ideal time because Martin is not exhausted from school.

The whole soccer thing was a disaster.

Martin was not the highest-functioning—that’s a stupid, despicable term, and I’m sorry I can’t find a better choice—soccer player. The group had a super-competitive Aspergery kid who sprinted every sprint fastest, shot every shot farthest, and even knew how to dribble. After each maneuver he ran to the sideline and asked, “Dad, did you see me? I was first!” There also were two kids whose attention spans were even shorter than Martin’s, and who needed hands-on physical assistance for every exercise: a wrist held while running, a foot guided to meet the ball.

I wish that Martin, in a situation like that, would rise to the occasion. I wish he would chase the Aspergery kid and try to kick just as accurately. I wish he would perform to the best of what surrounds him.

Alas.

Martin, instead, assumed every behavior we’re worked to alleviate. He ignored directions and ran where he wanted. He flopped to the ground and refused to move. The ball, he picked up and carried to the goal. The field cones, he kicked. When asked to participate properly, he whined, “No, no, no.”

It was painful to watch, and when the same scene replayed weekly, I grew to detest taking Martin to adaptive soccer.

Karate was worse still. That group was larger, probably a dozen kids, and met in a regular martial-arts center, with mirrors on the walls and a waiting area right next to the performance mats. Karate entails more instructions than soccer, which means more sitting and listening. Can Martin sit and listen? No, he can’t. And those stupid mirrors! He spent his time admiring his handsome mug while making faces. Many of the karate kids were fully engaged, executing the obstacle courses and jabs and punches. Martin used every distraction to divert himself from karate, and when he didn’t have a specific distraction, he rediscovered me in the waiting area and scampered to the edge of the mats to say, “Mommy, am I doing a good job? What am I doing? Am I doing karate?”

I started asking Adrian to take Martin to karate. Or my brother or parents to take him, whenever they were visiting.

Those were our experiences with adaptive sports.

Adjusting Upwards

For the past two years, Martin has attended our church’s “Kids’ Klub” on Tuesday afternoons. (I use quotes around “Kids’ Klub” because of Club being intentionally misspelled. Ugh. Ugly.) The “Kids’ Klub” is for all kids; in practice, Martin is the only participant with autism, and we send a special-education professional along to assist him as a sort of one-on-one aide.

During the same time that Martin was running amok on the soccer pitch and ignoring his karate lessons, we were getting updates from his Tuesday-afternoon facilitator that sounded like this: “He’s participating more every week,” or, “He really doesn’t even like me helping him anymore. I just step back and let him do his thing,” or, “During the art project, he asked one of the older boys to help him with the scissors. He said I could go do something else.”

Two different portraits of Martin were emerging: The Martin in adaptive sports, whose performance matched the lowest expectations, and the Martin in a regular church class, who was doing his best to match the typical kids. Was it a fluke?

Adrian and I decided to find out. On Saturdays, Martin attends a three-hour fun program for kids with special needs at the Jewish Community Center near our home. The JCC also has a variety of after-school activities that are open to all children, but geared toward the typically developing. Last month, I met with the director of special-needs programs (who knows Martin well), and then with the director of after-school activities (who didn’t know Martin at all), to discuss whether Martin might try attending, alone, a program geared toward typically developing kids. The director of special-needs programs said she thinks Martin is in a kind of “middle space,” still with challenges but not necessarily needing the attention of an adaptive program. The director of after-school activities said she was willing to let Martin give it a shot, though she wanted us to consider sending a one-on-one para along if the instructor decided Martin needed that help.

Finally, we all agreed on a good choice: an after-school gymnastics class for five- and six-year-olds. The group is small and well-organized, it entails almost constant movement, and Martin would be one of the older participants.

Whence My Anxiety?

I have had many painful moments in the journey we have taken since I first understood that my only child has autism. The moment I usually count as most painful came more than four years ago, late 2010, after Martin was diagnosed but before we started biomed. Martin had been attending a “Twos Club,” two afternoons a week, at the Manhattan-based, for-profit “City Kids Club” (not the real name). We enrolled Martin in the Twos Club, originally, before his autism diagnosis. Even then, we had noticed that he had trouble following directions, and didn’t seem to pay attention like other kids his age, and we were worried that he would perform poorly on his preschool admission interviews. My word, we’ve come a million miles since our days of high-pressure, well-off New York City parenting. When we signed Martin up with City Kids Club, they said they could help. They wouldn’t coddle him. They’d teach him to listen and to follow directions. In no time, he’d be in shape to get into a top-notch preschool.

It didn’t work out that way, of course. When the Twos Club let out, Tuesday and Thursday afternoons, half a dozen toddlers would sprint from the classroom and into their parents’ arms, showing off the art projects they’d made. Martin would wander out last, appearing not to notice me, shuffling under the direction of a staff member who carried his incomplete art project. The differences were becoming more apparent. And then we realized, y’know, autism.

Martin was still participating in the Twos Club when we were in the process of procuring Early Intervention services. I met with a director of our City Kids Club location. Would the services include a SEIT or a behaviorist? she asked. Maybe we could ask that person to accompany Martin to the Twos Club and help him participate? Okay, I said. I’ll see if that’s possible.

We aren’t getting a person who can accompany Martin here, I told her at a subsequent meeting. We’re going to receive center-based ABA services instead, so we’ll keep this the way we’ve been—

“Actually, we really need someone like that to come,” the City Kids Club director said. “Keeping Martin in the Twos Club without an assistant is becoming impossible. We have to assign an extra instructor to the Twos Club just to deal with Martin, and we don’t have the staff to do that for every class.”

The director and I stared at each other.

Come again? Were we being kicked out of the City Kids Club Twos Club? Holy cow. My son was about to be kicked out of an open-admission toddler program.

We had paid for the entire semester. The lawyer in me wanted to shout, “You’re kidding me, right? You’re kidding me? Because you are not going to remove my son from your program. You will allow him to participate.”

The shell-shocked autism newbie in me panicked and decided not to give the director that chance. I lied, “Martin’s Early Intervention class is going to overlap with this time, so he won’t be able to do both. Next Thursday will be his last day in the Twos Club.” The director did not offer me a refund for the remaining weeks, and I never requested one.

The following Tuesday, Martin’s second-to-last session, Samara, who had picked him up, brought me a disturbing report. At the session’s end, the Twos Club proceeded into the gymnasium area, adjoining the lobby where Samara waited, and the instructors blew bubbles for the kids to chase. The “extra instructor” assigned to Martin had clamped her hand tightly around Martin’s wrist and not allowed him to chase bubbles. She held him just to the side, where he could see the other kids having fun but could not participate. According to Samara, Martin had struggled against her and tried to reach the other kids and the bubbles. The extra instructor had responded by looking annoyed. She released him only when the bubbles were done.

My two-year-old son, deliberately withheld from participation. Made to watch. Punished. For what? For autism? My word, who would do such a thing? To what kind of program had I submitted my child?

I let Martin attend his last session that Thursday, because I had told him he was going and did not want him to perceive further rejection. I took the afternoon off work and picked him up early, before the other parents. The head instructor emerged with Martin. She handed over the day’s art project, and a City Kids Club t-shirt, and a “certificate of completion” for the program he had not completed, and all the while she smiled and told me how they would miss Martin. In my head, I pictured Martin held to the side, made to watch bubble fun and not allowed to join. As the instructor talked, I busied myself buckling Martin into his stroller. Then, because I knew I would not be able to speak without crying, I nodded dumbly and turned away.

Somehow—and I made a point of this—as I pushed Martin out of the City Kids Club for the last time, I managed to walk tall and dignified, despite the tears dripping from my cheeks. Forget you, City Kids Club. I’m proud to be the mother of the kid you don’t want. Once on the sidewalk, I knelt and told Martin that he was the best boy in the world and that I never imagined that I could love anyone as much as I love him. He stared past me, to the city traffic, and didn’t respond.

I’m crying as I write this. Seriously. I’m sitting in a Chipotle with my laptop and crying.

“It’s called ‘The City Kids Club’,” I lamented the next week to an old friend, “not ‘The City Club for Typical Kids’.” My first life-lesson in inclusion, in exclusion, had come and gone.

A New Martin, a New Me

Much has happened in the years since the City Kids Club did not want Martin. I have had better experiences with general (non-adaptive) programs, such as the aforementioned church Kids’ Klub, and the variety of one-afternoon events sponsored by our local park and preserve. (I’ve noticed that not-for-profit and volunteer-run activities tend to be more receptive to kids with differences than for-profit establishments are. I’m generalizing wildly. And eagerly so.) I’ve had time to meditate on Martin’s (current) limitations, and to ponder the economics of inclusion. That’s a fancy way of saying I’m marginally more forgiving of the City Kids Club. Yet however much wisdom I’ve acquired these last several years, what happened there still stings, and I fear putting us into a place where such rejection in possible.

… Which brings us back to gymnastics. Martin has been attending non-adaptive gymnastics at the JCC, weekly, for a month. The first class, Martin’s behaviorist accompanied him. She reported that he followed directions well, and that she physically assisted him only on the balance beam. (Martin, Mr. Mitochondrial Disorder, who sometimes falls out of chairs, on a balance beam!) Beginning with the second class, Martin attended alone. That class, and every week since, Samara or I have made, to the head coach, some version of this speech: “We want Martin to do everything himself, and to be included as much as possible. That being said, we know you have a class to run. Please don’t hesitate to tell us if Martin needs extra help, and one of us will come help him.” And so far, the response consistently has been, “Martin is doing fine. He does not need one-on-one help.”

Major. Victory.

The third week, I lurked around the gymnasium, observing while trying to stay out of Martin’s sight. The class has about a dozen kids, three of them boys. One of the boys seems to be apraxic and in fact does come with a one-on-one aide. The other boy has some behavior problems, diagnosed or undiagnosed. While I was watching, he disrupted the class several times and had to be asked to return to his spot, wait in line, and so forth. Martin, for his part, needed more assistance than other kids on coordination tasks, such as somersaults. He didn’t complete the obstacle course with the same urgency. Twice he cut a line, once he invaded the personal space of the boy with behavior problems (hugged him), and he required a few “refreshers” on directions. But overall he did well. He did not disrupt the class. He participated. More importantly still, he wanted and tried to participate.

Sometimes, Kids Suck

Almost at the end of the hour that I observed, Martin was waiting in line to use the balance beam when he turned and spoke to a girl he doesn’t know. Wow! I thought. Martin is addressing a new child. Great! What he said, I don’t know. But when he turned away, the girl caught the eye of another little gymnast, pointed to Martin, and then twirled her finger around her ear, making the classic “he’s crazy” gesture.

Martin didn’t see her, thank goodness.

But I did.

Kids will be kids. A six-year-old girl’s cruelty is not equivalent to an adult’s indifference. I hatched a plan: If one day I happen to see that girl with her mother, I will introduce myself, explain in the kindest terms possible what happened when my son spoke to her daughter, and ask if they might like to do a play date sometime, so the kids can get to know each other. I hope I do see the girl with her mother. The situation could turn positive for everyone.

The End of the Post and, Like, the Middle of the Story

Nine times out of ten, I know how I will conclude a blog post almost as soon as I draft the first lines. This post is different. I’ve written it over many days. (The Stanley Cup Play-Offs are happening. I’ve had a lot of hockey to watch.) I’ve not yet come up with the ending, so indulge me a microcosm/analogy:

Gymnastics is going great. Not perfect. Not without bumps. I’m not even sure where this “typical” class will end up, but all signs point to Martin’s full, independent participation. Eventually.

Our autism-recovery journey is going great. Not perfect. Not without bumps. I’m not even sure where this life will end up, but all signs point to Martin’s full, independent participation. Eventually.

IMG_7631

Not on This Continent

Posted on by findingmykid
3

We had a substitute pastor this weekend at church. During children’s time, as the kids in fifth grade and younger surrounded her, she asked whether anyone had ever picked wild blackberries. Several kids raised their hands, Martin among them. I wasn’t sure whether Martin was following this pastor, with her monotone voice and faded manner, or whether he was just raising his hand because other kids were.

Turns out, the former. As the substitute pastor started to move on, Martin interrupted by calling out, “I picked wild blackberries in a country that is not on this continent!” In fact, that was true. In February, when we visited South America, Martin joined his older cousins picking blackberries along a highway. (Was I terrified of this? I was. When in Rome, let your children roam free and close to speeding trucks, I reckoned.) Then the cousins set up a stand and yelled, “¡Moras! Se venden moras,” at every passing vehicle until they ran out of blackberries and had a few pesos in their little pockets. Martin found this all very exciting.

Most kids would have said, “I picked blackberries in [whatever country],” or, “I picked blackberries on vacation” —if they had interrupted at all, which is another story. Martin, however, said “picking blackberries in a country that is not on this continent.” He’s fixated on geography. Apparently he assumed that “in a country not on this continent” was specific and informative enough to make his point.

I was impressed that Martin was following the substitute pastor, and that he correctly related his experience, and that he had the courage to talk in front of a stranger. On the other hand, what he said was quirky. Eyebrow-raising. We remain in flux. Martin can say things now. He doesn’t yet say them the way most people would. Again we return to this question: As Martin continues to recover, will he become ever more “normal”? Will he lose his specialness?

I regretted that our usual pastor was not present. In the two years since we started attending our new suburban church, the pastor has got to know Martin pretty well. He would have taken a moment to follow up and ask Martin what country he meant, and Martin would have felt proud of participating at children’s time. The substitute pastor ignored Martin’s comment, however, probably because Martin was speaking out of turn. It’s not the first time that has happened when the regular pastor isn’t around.

Martin is becoming more “normal,” of course. I’m glad that means that he will face fewer instances of being ignored, fewer occasions on which an adult takes him for simply an undisciplined child. And I feel certain of this: This kid of mine will become more normal, but he will never lose his specialness.

ROOS

Posted on by findingmykid
7

ROOS! Doesn’t that sound like a European soccer star, or maybe an adorable cartoon character?

Yesterday sucked. Martin engaged in behaviors we haven’t seen in months, or even years. He was exhausted. He had been chatting incessantly in bed Tuesday night, and cracking himself up, and he didn’t get to sleep until after 10:00 pm, so yesterday morning I had to drag him from bed. (On a proper night, he’s asleep by 8:00 pm.) Getting breakfast into him was a struggle. When his head wasn’t half on his plate and half on his placemat, he still forewent eating in order to whine, “I have to throw up. I can’t go to school, because I’m so sick.” (He didn’t have to, and he wasn’t.)

After school, the situation only got worse. Every suggestion I made was met with, “No! No, no, no, no, no.” He had a meltdown when Neil Young came on the radio singing “Ohio.” I can’t really identify the genesis of the meltdown; it seemed to be some combination of the song being a live version, my insisting on listening to the whole thing, and Neil Young not being available for a concert this weekend in the New York City area. In any event, Martin subsequently said he didn’t want to hear “Jungle Boogie,” asked me to sample every station for a better choice, decided that actually “Jungle Boogie” was what he wanted to hear, and had a fresh meltdown because the song had ended while we were sampling the other stations.

His homework, which usually gets done in less than 10 minutes, took more than 45 minutes and still wasn’t complete when he went to bed. He cried. He said that he couldn’t do the addition problems and needed my help. (He could do them, and he didn’t need help.) He refused to eat dinner unless I spooned it into his mouth. And he talked. Holy cow, did he talk. He talked non-stop, perseverating on tableware and street signs. Once, I regret, I exclaimed, “Martin, please. Please just stop talking for a minute.” He shouted, “No talking? No talking! Mommy, no talking?” and started to cry again.

Adrian is traveling, so Martin and I were alone. Martin decided that he could not be more than a few feet from me, and that I had to respond to everything he said. Everything.

Sound like the kid I’ve been blogging about lately?

I didn’t think so.

ROOS is a term I’ve heard some parents toss around, since I started doing Heilkunst homeopathy with Martin. As I understand homeopathy (when it comes to Heilkunst, I’m still a newbie), we administer teeny-tiny doses of what injured the immune system, or even just teeny-tiny doses of the energy of what injured the immune system, in order to help the body rid itself of the insult. So if the particular insult to be addressed is a bout of coxsackie, we give the participant some of that energy, in the hopes that his immune system will say, “Hey, what is that? I want that out. I want all that out,” in a way that it couldn’t manage when overwhelmed by the original insult.

As part of this process, while the body is working to clear the original insult, some of the symptoms that accompanied that insult. Hence: ROOS, or Return Of Old Symptoms. For the past week or two, Martin has been working to clear the H1N1 vaccine. If the Heilkunst stuff is working—and I think it is—then that H1N1 injection Martin got in late 2009 had something to do with the development of perseveration and overall discomfort. Now let me add something amazing: This seems to be the most difficult clear we’ve had since starting Heilkunst, and the H1N1 vaccine is the only injection that I ever correlated directly with the development of Martin’s autism. Seriously. Almost immediately after he received the H1N1 shot, I noticed Martin, for the first time, start picking up little chairs and setting them in patterns. I didn’t know then that Martin had autism; six more months would pass before we began to realize, and so at the time I just thought, oh, that’s odd, and chalked it up to Martin having an engineer’s mind, an assumption bolstered when he soon developed a fascination with the upright vacuum cleaner. Fast-forward five-and-a-half years. Poor little guy is trying to purge that weird H1N1 injection, and whatever nastiness lurked within its ingredients.

I finally got Martin into bed around 7:40 last night. I tried to read him a book, about the importance of telling the truth (that’s been an issue lately), but it was slow-going. Every line I read sent Martin on a tangent. Bears in the story? “Mommy, are these my stuffed bears? Mommy, what are their names?” A soccer ball? “Mommy, do I play soccer? Mommy, at the JCC is there a sign that says, ‘Gymnasium’?” A store? “Mommy, at the store, do they have plates and forks and knives? Why?”

Fortunately, he fell asleep promptly. I decided to cut my losses on the day. I cancelled a 9:00 pm business call instead cleaned the kitchen—which I find relaxing; don’t judge!—while engaging in hockey-watching therapy. Tampa Bay and Detroit were playing Game 7 of their first-round series. I don’t care for either team, other than a preference for Detroit because it’s an Original Six team and located in a climate appropriate for playing ice hockey. On the other hand, Brian Boyle and Ryan Callahan, former Rangers whom I still love, both play for Tampa Bay now, and I was happy to see a victory for them.

I went to bed thinking about Rangers’ game coming up tonight, and imagining that ROOS indeed could be just an adorable cartoon character.

Beautiful, Terrifying

Posted on by findingmykid
Reply

Here are two situations I’ve encountered recently:

At the music school again. I’m in the waiting area, with my laptop and four other adults, while Martin takes his piano lesson. A woman enters, accompanied by a teenager and a younger boy, maybe eight or nine years old. All three look alike; I assume these are a mother and her two sons. The mother approaches the front desk with questions about lessons and fees. As she talks to an employee, for a while, she turns her back to everyone else.

Immediately I see that her younger son is on the spectrum. He’s holding a small electronic device, a video game, close to his face as he paces urgent, long-stride circles, humming. He plops to the ground and focuses intensely on the video game, tapping the screen with his thumbs. He rises and recommences circling.

The teenage son, meanwhile, settles into a sofa and starts studying some sheet music. He appears comfortable with the situation, and not embarrassed by his brother. In fact, the teenager looks as if he could be a special-education professional. Magically, his eyes are on both his sheet music and his ASD brother. When the younger boy breaks his circle pattern and bolts down a hallway, the teenager follows him. They return seconds later, the teenager guiding and redirecting to the video game. When the ASD boy intensifies his pacing, then begins to disrupt objects in a sensory-seeking manner, the teenager calmly collects him in his arms and brings him to the sofa, cradling him in all-over pressure. Not once does the mother even have to divert her attention from the employee with whom she’s talking—although she, like any special-needs mom, must sense all that’s transpiring behind her.

After five minutes, the mom settles her business with the front desk, and the teenager’s music lesson is ready to begin. Before he heads off with the instructor, the teenager makes eye contact with his mother, so she knows he’s passing his younger brother’s safety to her.

It’s like watching a master-class in family ASD management.

In Texas, at an indoor playground. It’s Easter Sunday afternoon and Martin is antsy, so my brothers and I bring him to an indoor playground. Martin removes his shoes and dashes into the climbing structure, a sort of gigantic, netted jungle gym. I sit with my brothers in an ample lounge surrounded on all sides by the jungle gym.

Two men enter. They look cool. Super-cool. Sunglasses. Ample, sculpted chests, pecs, and biceps, visible under fitted polo shirts. Nice jeans and shoes. Okay, I’ll say it. They’re handsome. They have four or five children with them. I’m not really sure how many, because my attention goes directly to the one with autism. From his face, I’d say he’s ten or eleven years old, but he’s almost adult-sized. He’s tall and, like many ASD kids, with their gut problems and food issues, he’s overweight. He’s not looking at anyone, or speaking. The other children store their sneakers in the plastic cabinets set up for that purpose. The ASD boy tugs off his sneakers and leaves them on the floor. The kids disappear into the climbing structure.

The taller of the two men, in a white shirt, seems to be the one in charge of the ASD boy. I guess that he’s the boy’s dad. Almost without a pause he scoops the abandoned sneakers and tucks them in a plastic cabinet. The two men take adjacent chairs and begin talking. They seem like good friends. I’m too far away to hear what they’re discussing.

I imagine it’s the New York Rangers, because really cool, handsome men everywhere, even in Texas, like to talk about the New York Rangers.

After some time the ASD boy emerges from the jungle gym. He seems confused until he spots the two men, then runs to them and climbs onto his dad’s lap. The boy is so big that he looks absurd perched on a lap, like a teenager or even a small man curling his body onto another’s. His dad, Mr. Super-Cool, Mr. If-We-Were-in-Any-Other-Setting-I-Would-Take-Him-for-a-Childless-Playboy, continues talking to his friend while wrapping one arm around his son and using the other hand to rub the boy’s scalp. He betrays no hint of feeling awkward about the 150 pounds of kid smooshing his quads. He continues rubbing his son’s head until the boy springs to his feet and scampers back to the jungle gym.

The super-cool guys and their charges leave before we do. (My brothers and I, in tandem, are lazy caregivers. While Martin plays, for more than two hours, we’re sipping coffee and teasing each other, destitute of other ideas for filling a holiday afternoon.) As the other kids get themselves ready, Mr. Super-Cool puts shoes on his son’s feet and ties them. They’re nearer us now, and I hear him ask, “You okay, buddy?” Then, probably because his son is not verbal, he answers for the boy: “You’re okay.” They walk out holding hands.

There is a beauty to scenes like this, to a teenage brother forced to mature into vigilance, to a dude with nothing but tenderness for the child who requires more attention than the rest combined. I want to wave my arms and shout, “Hey, us, too! Autism’s got us, too! I’m proud to be like you!” I want to be counted with those who rise so brilliantly to the challenges they face.

Yet I also regret these scenes. Autism is a monster of our own making. Its incidence is rising from some combination (I don’t know which; who does?) of the dangers we humans have unleashed. Chemical concoctions disguised as food. GMO’s. Antibiotics, overused. Electromagnetic fields. Mercury and other heavy metals. Radio waves. Injected toxins. Pollutants. Pesticides. Sure, I admire the caregivers who meet autism head-on. They’re making positive choices. Where is the choice for the children with autism, who need calming, who crave sensory stimulation, who cannot sleep, cannot relate, cannot adapt, cannot ensure their own safety?

And where will they be when the brave and patient caregivers are no longer available?

We’ve got to stop this.

Martin, in the indoor playground, somewhere.

Martin, in the indoor playground, somewhere.