Category Archives: Mistakes

Pinpointing

Posted on by findingmykid
3

When people ask me what treatment “helps Martin most,” I shrug and say, “Dunno. Some combination of what we’re doing, I guess.”

We’ve dragged ourselves through a rough couple months lately. Symptomatic, crabby, stagnated months. Regression. Over the last eight days Martin has improved, and I am praying the road is becoming firm again.

I ask myself, and others have asked me, what provoked this latest months-long slog. My first thought is, “Dunno,” followed by, “Viruses seem to be an issue. Also chronic internal inflammation. Unavoidable radio waves. Adrenal stress. Something environmental? The construction happening directly north, east, and south of our apartment right now? Our own bathroom renovations? Parasites, maybe. Or electromagnetic fields. Or an issue at school,” followed by, “Oh, hell. I dunno.”

Nevertheless, I have two recent incidents that either (1) put the lie to unmitigated “I dunnos,” or (2) demonstrate that I retain an active imagination.

Incident One: Evil Metal Detector?

Two weeks ago we traveled to Chicago for doctor appointments. Over the course of the three-day trip Martin’s symptoms ameliorated, somewhat, and by the time we arrived at O’Hare for an evening flight home, he was able to hold my hand and wait in the security line—without dancing, skipping, wresting his little wrist from my grip, wandering away, or staging a meltdown. He was doing well.

When we arrived at the front of the line, I asked the TSA agent on duty whether I could request that my son be hand-searched, or at least scanned with a security wand, instead of walking through the metal detector. He has a neurological condition, I explained, and I prefer not to expose him to the magnetic field.

The agent seemed bemused by my request but responded helpfully. Because they aren’t allowed to touch children under age 12, she said, my request would require calling a supervisor from another part of the airport. Fifteen or 20 minutes might elapse before he arrived. Should she summon him?

I hesitated. We had half an hour until boarding time, but who knows what “15 or 20 minutes” really means, and I still had to clear security myself (Martin’s drops and pills being hand-searched while I argue/bargain with agents, flashing prescriptions for special foods and liquids in larger-than-three-ounce containers), then move Martin a quarter-mile to the gate.

“It’s okay,” I said. “He can pass the metal detector.”

But it was not okay. Immediately after walking though the metal detector, Martin became unmanageable. He refused to sit while I completed the security check, ran away from the security area despite admonishments, and whined nonstop. When we tried walking to the gate, he could not hold my hand or focus enough to progress more than 20 feet without crying. The flight was delayed (and why would it not be, at a moment like that?), so I took Martin to the Admirals’ Club family lounge, where he spent 90 minutes alternately running circles around the room and collapsing on the floor. After half an hour I retreated into my own world, drinking wine and texting friends for support. Quality parenting, I know. I should mention that the family lounge has glass walls, so dozens of business travelers in the next room witnessed our mother-and-son performance, albeit without sound.

Why did Martin’s behavior change so radically when he passed through the metal detector? Did the magnetic field affect him, or was the decline coincidental, triggered instead to the onset of travel exhaustion or some other factor? The Health Physics Society’s webpage on security-screening safety concludes, “[B]ecause of its nonionizing properties, the magnetic field generated in a metal detector will not cause harm to persons even with routine and/or repeated scanning.” A post on the BabyCenter website states, “Anything that generates or uses electricity, such as power lines or household appliances, produces an electromagnetic field. At the low levels a metal detector emits, this exposure is considered safe for everyone, including pregnant women.”

I will never know for sure whether the metal detector provoked Martin’s symptoms that evening. But something happened around the time he passed through. That much I witnessed.

Incident Two: Precarious Home Library?

Some weeks ago a nice fellow from Healthy Dwellings came over and completed a “healthy home evaluation” for our apartment. He spent several hours taking meter readings, testing water, checking air quality, and so forth. The resulting report showed that we’re doing pretty well, in most aspects.

One exception was radio frequency (RF), those electromagnetic waves that send data wirelessly. Ideally, RF levels should hover below 10 mW/m2. The lowest reading in our home—in Martin’s bedroom, thank goodness for small favors—was 137 mW/m2. In our living room, the level was 540 mW/m2, and in the library, the level topped out at a whopping 3,600 mW/m2. Our home library is an alcove set within the rafters (we live on the top floor) with a large skylight absorbing all that New York City has to offer (windows are the most common entry point for external RF waves). Our home library, because it is farthest away from any other apartment, is also where we keep Martin’s drum set.

As averred, Martin’s behavior improved last week. One particularly unsymptomatic afternoon Samara (babysitter) picked Martin up from school and brought him home, where I was cooking. When they arrived I completed several HANDLE exercises with Martin, watched him play with Thomas trains, and discussed with Samara how calm Martin appeared, steady on his feet and content to play alone. Samara agreed.

Martin then declared his intent to play drums and headed upstairs to the library alcove. Samara followed him. I returned to the kitchen. By virtue of an open floor plan, the library is visible from our kitchen. That helps me keep an eye on Martin and, in this instance, let me observe that, within five minutes of his going upstairs, Martin transformed into a different kid: running back and forth, flailing his limbs, unfocused. I called for Martin and Samara to come back downstairs.

It was another metal-detector moment. What caused Martin’s behavior to change from “with it” to “restless and in his own world”? Part of me wants to blame the library and its RF hurricane—because RF levels, at least to some degree, are fixable. Part of me thinks that I’m blaming the RF levels because I just discovered they are high in the library, and I’m prone to grabbing hold of any factor I can blame when Martin tanks. All of me admits, “I dunno.”

Pinpointing

These incidents raise a few possibilities.

First, I may actually have pinpointed some factors that affect Martin more than others. Brain-scrambling magnetic fields and RF waves!

Second, I may have seen connections that, in reality, don’t exist, and I may therefore explore yet more dead-end routes, like refusing to let Martin through metal detectors or blocking RF waves.

Third, the truth lies in some combination.

Doesn’t it always?

Hard Truths

Posted on by findingmykid
2

Where have I been, these two months?

Let’s talk hard truths.

I’ve been dealing with Martin, who’s been nowhere near where I’ve wanted him.

Over this summer, something went awry, and his progress hit a plateau. I did not see significant improvement.

Honestly, I don’t really recall seeing any improvement. We had some firsts, like supermarket walking and approaching a stranger. At the end of July, a friend sent me an email stating that her husband, upon interacting with Martin for the first time in several months, “thought he seemed great—real improvement since last time!” But the jagged ascent to which I’ve become accustomed—progress, little setback, progress, little setback—evaporated. At times the summer felt more like uneven descent: no progress, little setback, no progress, little setback.

Finding My Kid is “a parent’s real-time blog of autism recovery.” It’s hard to post reports when no recovery is evident. It really is. It’s even harder when the author descends into hopelessness, into questioning whether she’s abandoned her career, her church work and activism, and large chunks of her social life in pursuit of a goal that never will be reached.

Then, two weeks ago, Martin tanked. I mean, tanked. One day I felt like, though progress had leveled off, at least I had a child without perceptible autism, and the next day I had a child with myriad classic signs of the disorder. In our apartment Martin ran compulsively to and fro, chanting “d-d-d-d-d-dah, d-d-d-d-d-dah.” He lost eye contact and name responsiveness. He threw tantrums when not allowed to watch one video repeatedly. Echolalia resurfaced. It was as if a year of progress disappeared overnight.

I consulted with his doctors and therapists. The prognosis was unanimous: stress. Adrenal stress, systemic stress from doing too much. Martin’s delicate system cannot keep up with the amount of detoxification we’re imposing.

We pulled back immediately. I took him off almost every agent meant for detoxification, whether heavy metals, parasites, viruses, or otherwise, and I kept him on only supplements and agents meant to support his adrenals.

With those changes, Martin shows signs of improving again. The repetitive behaviors, though still present, are diminishing. He’s making eye contact, albeit unsustained. Adrian and I are subjected to near-constant whining (hey, Martin is a four-year-old, after all) but fewer tantrums. I’m not going to say Martin’s recovery is back on track. I’m not even going to say we are where we were a month ago, when I already was unhappy with his progress.

I will say that, I hope, the ship is turning again.

So why recommence blogging now?

Because I have no excuse not to. Finding My Kid comes with an honesty pledge. Posting reports only when recovery is proceeding apace—well, that’s just not honest.

See you soon.

[Addendum: If you’re taking the time to read Finding My Kid, you probably already saw the piece in this morning’s New York Times about the the links between autism and immune disorders. I’m always happy when the mainstream press edges toward acknowledging that autism is medical and should be treated as such.]

Crying Under Control. Discipline, Not So Much

Posted on by findingmykid
2

When Martin launches a crying fit—usually because he doesn’t want to do whatever we’re about to do, like eat dinner, or put on clothes—I kneel, hold his hands in my left hand, raise my right index finger a few inches from his face, assume a stern expression, and look directly into his eyes, even if he avoids mine.

The desired effect of this is that, after a few seconds, Martin will say, “No crying,” sniffle, and regain control. The method succeeds in about 60% of tantrums.

If sternly raising my finger fails, then I direct Martin to the “crying spot.” At home, the crying spot is one end of our sofa. Anywhere else, the crying spot is wherever I indicate. (“That bench is a crying spot. Do you need to sit in the crying spot?”) Either the threat of the crying stop suffices to stanch the tears, or Martin sits (remarkably, he stays put) until he’s calmed down.

This method has tamed Martin’s tantrums. So yay! Yay for me and Martin.

Then there is discipline, which is a decided boo! Boo for me and Martin.

I have yet to find an effective way to discipline Martin. I use time-outs, of course, and they accomplish nada. (Of course?) Martin perches on the stair landing, our designated time-out spot, until the kitchen timer sounds, then leaps up, yells “Sorry!”, and goes about his business—his business being, often, to repeat whatever behavior just got him in time-out.

Of particular frustration is that Martin still lacks strong ability to read faces and emotions. I have trouble conveying genuine anger to him.

On our latest trip to Chicago, Martin and I pulled into a Whole Foods Market to buy food supplies. (We stay in a hotel “suite,” which offers a kitchenette where I prepare simple meals.) Martin, who was tired, rode in the cart. He asked to hold the ghee I selected.

“Be careful to hold on tight,” I said as I handed him the ghee. “That jar is glass. It will break if it falls.”

Martin needed a few reminders on that point. Nevertheless, we finished shopping and paid without incident. Back at the hotel, I unloaded the groceries onto the counter and informed Martin that we would head to his doctor’s as soon as I went potty.

I was doing just that when I heard a smash from the kitchenette.

Martin materialized in the bathroom doorway, smiling. “It fell,” he said.

“What ‘fell’?”

He giggled and scampered away. I finished up and within seconds was yelling—

“No! No way. Get away from there. Now!”

—as I seized Martin under the arms and yanked his stocking feet from a pile of ghee-slicked glass shards. The evidence was indisputable: Martin had taken the ghee jar from the center of the counter and dropped it onto the tile floor. At the least. More likely still, Martin had thrown the jar.

I was furious. I marched Martin directly to the sofa for a time out. He lolled merrily there whilst I tried to use paper towels gather glass and ghee, and then he accompanied me to the front desk, where I sheepishly requested that our freshly cleaned kitchenette be re-cleaned. He evinced no remorse. To the contrary, notwithstanding my scolding, he appeared downright gleeful.

Readers, if you have suggestions, on how I might get Maritn to understand when he’s in trouble—please, send them.

For my part, I’ll try to keep perspective and focus on Martin’s testing limits, which I understand is a positive and natural developmental stage (unlike, say, misreading emotions). The next day I recounted the ghee incident to a good friend, also mother to a toddler.

My friend laughed at me.

“Well,” she said, “you’re the one who wanted neurotypicality.”

Bad Day. My Bad

Posted on by findingmykid
3

Last Sunday—a week ago now; perhaps the trauma has kept me from posting this confession?—was a bad day for me and Martin. The fault was mine.

Looking back, I suppose the stage was set on Saturday.

No, wait. It was Friday. The bad day that was last Sunday actually began on Friday.

Samara put Martin to bed Friday evening, 7:00 pm, without incident. Adrian was traveling, and I was dining with friends who’ve recently relocated to New York. I’ll call them, à la Martin, “Uncle Donny” and “Uncle Brian.”

I arrived home around 11:00 pm Friday, hoping for a good night’s sleep. With Adrian out of town, I’d made plans for a day trip on Saturday; Uncle Donny and Uncle Brian were to accompany me and Martin to Stuart Family Farms and then to lunch in Connecticut. At midnight I snuck into Martin’s room for a detox therapy, managed it without waking him, and dozed off in my bed.

I slept a pleasant hour before the night tanked. Martin woke at 1:40 am and could not close his eyes again until 6:00 am. At 8:00 am I did detox therapy again, almost hoping to wake him. We had planned to leave at 9:00 am for Connecticut; that hour passed with only snores from Martin. I decided to pack a breakfast and most of Martin’s morning supplement routine in a to-go cooler, along with the lunch I’d assembled Friday. At 9:30 I called Uncle Brian and declared that, come hell or high water, Martin and I would be on the road in 20 minutes. Then I woke and dressed Martin, pushed the most crucial morning supplements into his mouth, and hustled him to the car.

Would that be the dawn of the worst day ever? Hardly. There’s a pattern I’ve noticed: When Martin has a bad night—and in all honesty, we’ve seen a lot of bad nights lately, more than we used to—the next day does not reflect his sleeplessness. He’ll be drowsy, maybe mellower than usual, but sharp and agreeable.

And so it was on Saturday. Uncle Donny sat next to Martin’s car seat and helped Martin devour the to-go breakfast and supplements, which Martin gamely accepted. En route to Bridgewater Martin chatted; at the farm he delighted in chickens and pretended to water some grass; at the lunchtime diner he played quietly in our booth, then accompanied Uncle Donny to check out the fish tank.

Predictably, though, on the way home he fell asleep for almost an hour. From clapping to singing to insisting we’d soon hit the RFK Bridge (his favorite), nothing would rouse him. And an hour’s nap in the car makes bedtime a nightmare, so that instead of sleeping at 7:00-ish, Martin needed until 9:30 pm to doze off. And a late bedtime invariably prompts an early wake-up, so that instead of achieving his preferred eleven-and-a-half-to-twelve hours, Martin sprang up at 6:30 am, after just nine hours.

And then there’s the fact that, no matter what, Martin’s second day after a sleepless night is worse than the first. Martin didn’t sleep Friday night. Sunday was bound to suck.

We were late for church. Despite being up since 6:30 am, somehow we couldn’t get out the door before 11:00 am. (“Somehow” in this context means, roughly, “Martin refused to eat breakfast, dawdled with his supplements, cried for half an hour, seized dirty silverware from the dishwasher, and complained when I tried to shower.”) Martin threw a minor after-service tantrum when it was time to quit fooling around with the piano, and again when I made him sit on the potty. I didn’t leave the church feeling spiritual. I left feeling exasperated. Possibly murderous.

When our afternoon plan, hanging at the playground with a friend, fell through, I decided to call it quits and head home. I figured Martin could enjoy quiet activities and I could get some housework done.

Therein lay my error. We were home by 1:30 pm. Between our arrival and Martin’s bedtime, 6:30 pm, spanned five hours. Five hours, I soon discovered, is more than adequate time for a three-year-old to suffer extreme cabin fever and then, compounded by his sleeplessness, to morph into a fiend. By evening Martin had dumped toys twelve feet from our second-floor loft space, emptied the cats’ water fountain onto the hardwood floor, opened the valve on our Berkey countertop purifier to flood the kitchen, unfurled half a roll of toilet paper into the toilet, climbed the cat tree, refused to complete even a single HANDLE or RDI exercise, and pitched multiple crying fits.

Amidst this naughtiness Martin was also attacked by autism symptoms, the kind we used to see constantly but that now strike only at tired, stressful moments. He ran back and forth. He lost coordination and eye contact. He repeated my words, if they provoked any response at all.

I found myself—and this is not easy to admit—in the most deplorable parental state I know: counting the minutes until Martin’s bedtime, and annoyed by behaviors I know he cannot control.

It was not a satisfying day for either of us. Martin was frustrated by boredom and fatigue, and I by my hapless responses to his conduct. I spent the afternoon saying no!, enforcing time-outs, and wanting to ostrich my head.

Martin slept well Sunday night. I planned an after-school activity for Monday, and by Tuesday we were back on track.

But the memory of Sunday haunted me, and so I assembled a list of lessons learned. I must prepare for days when I know sleeplessness will be a problem. Preparation means a plan, and a back-up plan, and a last-ditch plan. If I wouldn’t expect Martin to spend an afternoon doing nothing on a good day, I’m a fool to expect it on a bad day. When I saw his behavior hitting bottom, I should have cut my losses, taken him out of the house, and headed for the nearest playground. Or at least in his stroller for a walk. Maybe for a green juice at the organic restaurant, or any treat. I cannot let my own fatigue ruin a precious afternoon with my son.

The bad day was my bad. I own it. I’m grateful that there’s always tomorrow.

Home Again. Not Perfectly 100% Spot-On

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We’re home, since Wednesday evening.

We were overjoyed to see Martin, who seemed to share the emotion. He spent Wednesday evening running excitedly around the apartment, pointing alternately to me and Adrian, exclaiming, “That’s Mommy! That’s Daddy!” He showed off some new skills, too. He’s riding a bicycle, an upright model with training wheels that my mother puchased while we were away. Martin pushes the pedals and steers and calls, “Help! Help!” when he gets himself stuck. He’s also taking pills without assistance. If I hand him a capsule and ask him to swallow it, he pops the thing into his mouth and obliges. Pretty cool stuff.

At the same time, I can’t deny that, in some areas, he’s “off.” I have to call his name several times to get a response. When he does finally answer, he maintains eye contact only briefly. He’s unfocused and difficult to control. He’s thrusting his lower jaw forward, grinding his teeth again. And he’s taken to wearing a too-small winter vest, even in the house. Even to bed. He started this while Adrian and I were in Israel. Samara speculates that he may have been associating the vest with us and therefore finding reassurance in it. I (being Debbie Downer, as I am prone to) suspect that its something more like the weighted vests often recommended for autistic kids, to help them feel secure when their senses are processing haphazardly. In any event, it’s a new behavior, and one with which we are not pleased. He just does not seem to be doing as well as before we left.

I’m asking myself what all this means.

Clearly, my mother did an outstanding job with Martin while Adrian and I were vacationing. She followed his supplement routine scrupulously, taught him to ride a bicycle, and generally loved the heck out of him. One of my brothers was here from Boston too, playing with Martin and—to needle me, his New Yorker sister—taking pictures of Martin in Red Sox apparel and posting them on Facebook. So inadequate care has nothing to do with Martin’s slight backslide. Other possibilities I’m considering are anxiety at not understanding when his parents would return; a stale supplementation routine (he’s due for some changes, which we were waiting to implement until after vacation); and the change in routine, i.e., lack of school for a week-and-a-half.

I’ve promised repeatedly not to let the day-to-day ups and downs of the process get to me. But I do, of course. Yesterday, with Martin’s attention AWOL, I tripped and stumbled into the doldrums. I blamed myself, for being gone. I felt hopeless, for losing some of our great recent progress. I … whatever. There is no sense re-hashing a bad day. Samara works late on Fridays, so Adrian and I went grabbed dinner and went to see The Iron Lady. I fell asleep half an hour into the movie and woke to the closing credits. I felt better.

Does this mean I’ll never go away again, until Martin is recovered? No, probably not. Adrian would never stand for that, anyway. He’s my sanity check. More likely it just means it will be a while.

Now is the time to figure out what’s going on with my little man. Head up. Done with feeling sorry for myself.

 

Missing Martin, Distressing Martin (?)

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Adrian and I are ringing in the New Year in Jerusalem. It should be a great time, and it is a great time. Right now it’s also difficult, because of messages from home. Samara, who has been helping my mother with Martin while we’re away, sent this to my phone (portions translated):

Hi. How are you guys? Everything is fine at the house, but Martin misses you so much. Sometimes when he’s saying, “Mommy is coming back another day,” that’s when a tantrum starts.

Today he cried over a saxophone. He was playing with some stickers his grandma gave him as a present. There were pictures of instruments, and one of them was a saxophone. So he remembered that he has [a saxophone] and started to look for it in his toy chest and took all his toys out of the toy chest. I told him that [the saxophone] isn’t there anymore because it broke, and he started saying, “It’s coming later,” and so mistakenly I said that the saxophone is not coming later, that we need to get a new one at the store because yours is broken. He quickly responded that we should go to the store to buy a saxophone, “Vamos a la tienda a comprar un saxofón.”

I thought that was a very clever sentence. But he was really serious about it. Then he remembered that you aren’t here, either, and he related you to the saxophone and things got worse. He started to cry even more. So I took him to the toy store to look for something similar to the saxophone. Well, he saw a trumpet and got that into his head and didn’t want to think about anything else. I was going to buy it right at that moment, when I realized that I didn’t have my wallet in the backpack and—oh boy! He cried so much. He couldn’t understand that we were coming right back to pay for the trumpet. He cried all the way back to the house and until he saw my wallet, when he finally understood that I was not kidding.

Later he was the happiest boy with his trumpet, and then he got another present from your mother and he was more happy still.

Ugh. Martin has not obsessed about a musical instrument (he used to carry one everywhere) in months. Is emotional distress causing bygone habits to reemerge? Emotional distress because I am not there?

So there was that crap situation, which happened yesterday. Then this morning my mother texted: “Martin has started, ‘Mommy and Daddy always come back.’ [Your brother] leaving will be tough on Martin today.”

I’m craving my little man, craving his presence.

Me siento mal.

Vaccinations. I’m Ready for the Hate Mail

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A couple weeks ago, a message came across my Twitter feed (@findingmykid) telling parents of kids with autism not to blame themselves, because there is no single contributor to autism—no specific action they should or should not have undertaken. I was grateful for the reminder. I do have a tendency to blame myself for Martin’s autism. We had our kitchen rebuilt, clouding the apartment with construction dust, while I was pregnant. I let myself be bullied into induced labor, leading to epidural anesthetic, Martin’s loss of oxygen, and a C-section birth. I fed Martin foods I now know to trigger digestive difficulties. When we had new window guards installed, I put him to bed thinking the paint had dried, only to open the door three hours later and find his bedroom filled with fumes.

And—I chose to have Martin vaccinated. I started out wary of vaccines, from personal experience: I myself was fully vaccinated as a child, including against the measles, and yet at age 12 I contracted measles. Even the health department visited to find out why I’d caught the contagious and life-threatening disease. That experience has always given me pause about the efficacy of vaccination. So when Martin came along, I tried to educate myself. I attended two seminars (these billed themselves as neutral but turned out to be very pro-vaccination), perused some articles, and read the Dr. Sears book. In the end, after talking with Martin’s pediatrician, I decided to vaccinate Martin, but on the Dr. Sears “alternative” schedule, which skips some shots and spreads others apart. I reviewed the ingredients of available vaccines—they were non-vegan and generally disgusting—and requested them by brand, paying especial attention to aluminum content and to the combination of vaccines (I never allowed more than two) given on a single visit.

Still, I had misgivings, long before Martin was diagnosed with autism. I was uneasy with the idea of injecting, into my son, foreign matter including metals, Guinea pig embryo cells, cow blood serum. Are human bodies really designed to deal with that kind of intrusion, particularly by injection instead of ingestion? Each time Martin received a vaccination I left the doctor’s office feeling vaguely unsettled, even if I was unsure why.

It was mother’s instinct, I now suspect.

In 1998, Andrew Wakefield published a paper in The Lancet linking the MMR vaccine to digestive disorders associated with autism. The Lancet subsequently retracted that paper, and last April the BMJ published an article aimed at discrediting Wakefield’s study. That BMJ article was widely reported, and I recall a Facebook friend—damn you, social media—posting a link to one such report, with a tagline something like, “GET OVER IT, MORONS! VACCINES DIDN’T GIVE YOUR KIDS AUTISM!!!”

Yes, it was written in all-caps, the hallmark of any thoughtful sentiment.

I try not to take umbrage to Facebook posts. This one got to me. I think it would have got to me even without Martin’s condition. Facebook does not represent the best platform for discussing controversial ideas. (For example, have Facebook snippets persuaded anyone, ever, to change a political position?) Worse, the words, written by a mother of several neurotypicals, were inconsiderately harsh for someone not facing the realities of parenting a child on the spectrum.

More than the inappropriate forum or lack of empathy, though, was my belief that this Facebook friend was too cavalier.

I’m not going to say that I think vaccines “cause” autism. I’m sure many readers are horrified enough that I acknowledge a possible link between vaccines and ASD, at all; when I told a college friend that we were undertaking autism recovery, her first question was, “Are you going to be like that actress who went crazy and said vaccines made her son get autism?”

I’m not going crazy (and neither was Jenny McCarthy), and I’m not using the word “cause.” But after reading more, and from a wider variety of sources, I think this: Children who are prone to ASD, for whatever reason, share a sensitivity to certain food triggers, to electro-magnetic fields, to chemicals and heavy metals, and in general to foreign substances. And those children, when their sensitive systems are invaded with the gunk that comprises vaccines, react with increased neuro-divergence. Vaccines, therefore, in my entirely un-scientific opinion, do more harm than good to children who already have, or may develop, autism. I also think that some of the highly touted successes of vaccines may stem, in part if not primarily, from general advances in hygiene and health care; that is, bell curves appear to show that some diseases we vaccinate against have decreased at rates similar to diseases we don’t vaccinate against, because we’ve got better at caring for ourselves.

Be warned—here comes the lawyer in me. I am not advising anyone not to vaccinate his or her child, on the spectrum or otherwise. I would never give that advice. I am not a scientist. I freely admit that I do not fully understand all of what I read on topics like the effects of vaccines, and that I do not have the background to discern among competing sources of information. Thinking more globally, I have no reason to assert that, say, malaria vaccinations in Africa or polio vaccinations in South Asian are not a good thing. I have only my own conclusions, for me, for my family.

My law-school roommate asked me if she should stop giving her (neurotypical) children the fluoride tablets their dentist recommended. I answered honestly: I don’t know. I filter Martin’s water for fluoride. I think fluoride is bad for his condition. That’s not definitive. I may not even have the best or newest information. But from what I’ve got, no fluoride for Martin.

I regret, now, that I allowed Martin to be vaccinated. I particularly regret falling prey to the 2009 H1N1 hysteria and getting Martin that vaccine, because it was so wholly unnecessary, and because that was the single instance that I can remember in which my son seemed different after the injection than before. (I don’t have any specifics for that last comment; I can only say that Martin, who was not yet diagnosed on the spectrum, seemed pretty kooky for a day or two afterwards.) After consulting with Martin’s Track Two doctor and Martin’s pediatrician’s practice, Adrian and I have decided to forego any further vaccinations, at least for the time being. I feel far less threatened by hepatitis B than by further neurological damage to our son.

The A-ha Moment: Part Two

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(This is the second in a series of posts, begun here last month.)

“There’s something we’re missing,” I said to Adrian after I read the article about a six-year-old boy whose autism had disappeared. “There’s something more we can do.”

I was ready to do whatever it took, to make any sacrifice or pay any price, to get back the bright and engaged boy I knew Martin could be. But I had no idea how, or which direction to turn.

After Martin was diagnosed, Adrian and I had got, from friends and family members, recommendations of people we “really should talk to.” I’d never followed up; I tend to be a go-it-alone kind of gal, and didn’t see myself finding solace in an “autism parent support group,” the path I thought I’d be walking if I started reaching out. Now, feeling lost, I decided to exploit some of those contacts.

My first call was to the wife of a once-removed business contact of Adrian. Neither Adrian nor I had ever met this woman, or her husband, who live in another city. I’ll call her Annie.

Annie answered the phone at the time we’d arranged by email, and I explained the situation: Martin’s diagnosis, the behavioral therapy, my frustration about not doing enough.

“I’m glad you contacted me,” Annie responded. “My son is nine years old, and recovered from autism.”

Those words. He’s recovered?

“Yes, completely.”

I grabbed a pen and notepad. “Tell me more?”

Annie, God bless her, spent a full hour on the phone. She had “dropped out of life” for four years, she said, in order to recover her son through every medical, holistic, traditional, and behavioral approach she could find. It had been hard work, especially knowing whom to trust and what to try. In the beginning she’d been told that only behavioral therapy was available. She hadn’t considered biomedical recovery until a friend got her interested in the topic. Once they started biomedical recovery, the difference was amazing. The traditional doctors told her the process would never work. She ignored them. Her only standard became whether a treatment might hurt her son.

(As I’m writing this, from my scrawl on that yellow notepad, ten months after the conversation, I hear in Annie’s words exactly what I would tell a parent if one were to call me today.)

Annie told me about RDI therapy instead of ABA. (She had pulled her son out of traditional one-on-one ABA therapy, a decision I also made some months later.) She told me about the Yasko profile, Generation Rescue, genetic mutations, hormone treatments, available therapies. My head was spinning. The key, Annie concluded, was to find a doctor with strong traditional medical strengths who nonetheless would ride the cutting edge of new treatments. She gave me the name of a doctor halfway across the country, an associate of the excellent Track Two doctor we now use for Martin.

I hung up the phone in a different place than I’d been an hour earlier. I spent the afternoon chasing down websites and phone numbers. I printed pages and pages. By the time Adrian arrived home that evening, I had a full presentation prepared for him.

I began with, “This is what we’re going to do.”

Quote of the Last Six Days, and an Associated Analogy to a Tree

Posted on by findingmykid
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Six days have passed since I began my occasional series of helpful quotes, so this post I shall declare neither the quote of the day nor the quote of the week, but the quote of the last six days.

These are lyrics from “Shaking the Tree,” which I believe first was released on Youssou N’Dour’s 1989 album The Lion and then became a sort of title track for Peter Gabriel’s 1990 compilation Shaking the Tree: Sixteen Golden Greats.

You had to be so strong
And you do nothing wrong
Nothing wrong at all
We’re gonna to break it down
We have to shake it down
Shake it all around.

If you know the song and Peter Gabriel’s music, you may be thinking, hey, that song is about women’s empowerment, not autism recovery. As far as I know, that’s correct. It’s about women’s empowerment, and the tree is male oppression. Nevertheless, I’m going to say it can be useful in the struggle against autism.

Allow me to confess that, although the sun has broken the clouds occasionally (church last weekend was a nice shine), this has been a crap few weeks. Really. I’m putting on a brave face, but things are not going well. Martin has no attention. His eye contact is off. He’s echolalic. He’s been shuffling his feet instead of heel-to-toe walking. And he’s exhausted all the time.

Several days ago, Martin’s HANDLE therapist, Katie, sent me an email responding to the September 5 post in which I described recovery as “beat[ing] the daylights out of Martin.” Katie said she was concerned that we may be trying too much at once with Martin, instead of approaching his recovery gently, which is the best path to healing. Her concern is valid; indeed, I plan to post later this weekend on the topic of gentleness. Fortunately, Martin’s excellent Track Two doctor also agrees that moving slowly is most effective. Just yesterday she and I consulted about the crap time we’re having, and she tweaked Martin’s supplementation/detoxification regimen—for the time being, doing less.

Which brings us to Peter Gabriel and the tree. “We’re gonna to break it down / We have to shake it down.” In this analogy, autism is the tree, and Martin is the garden that’s been invaded. I aspire to get rid of the tree. One cannot simply push over something so massive and entrenched as a tree. Hacking away with an axe creates problems, too: It leaves the stump and the roots, still sucking nutrients from the soil and hogging all the other plants’ space. No, to succeed we have to shake it down.

How does shaking down a tree work? By building momentum, offsetting the push to against the push fro and thereby moving with ever more power. Eventually the tree will topple, extracting its own roots from the ground. But, disrupt the side-to-side motion—by deviating from the straight path, for example, or failing to keep pushing at the right moment—and the process stops. The tree settles back into place, trunk vertical.

That may be what has happened these past few weeks. Something has disrupted the push-pull toward recovery. Perhaps we are doing too much, as Katie suggested, thrusting one direction without respecting the need to rock the tree. Or perhaps some supplement or exercise or change in routine doesn’t agree with Martin and has disrupted the motion. Whatever it is, autism seems to have settled back into place, plunk in the middle of the lush garden that is Martin.

It can feel, when this happens, like we’re starting from scratch. True, we do have to start anew, in terms of shaking that tree again. But although shaking it down may still take a while, it gets easier every time we start, because the roots have already been loosed.

Autism may think it’s settled back in, but it no longer has the same hold on Martin. I’ve seen the progress we’ve made. I’ve witnessed where we were before this slump. I know we’re getting to the core.

The tree is vulnerable.

So it’s been a crap few weeks. It’s time to muster my determination and start shaking again, steadily, persistently, yet gently. After all, the soil in which this tree grows is my son. I’d like to keep it as intact as possible.

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.