Tag Archives: autism

A&A Part III: Mold, or How Far Do We Go?

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We had the whole house checked, top to bottom, for issues and possible allergens after Martin started having these reactions. Overall, our house is doing pretty well. Mold in the air is low. Mold in dust samples (dust? what dust?) is normal-to-low. Mycotoxin sample shows barely perceptible positive for tricothecenes. Total VOC air sample is ideal, and mold VOC air sample is low.

The consultant did notice “some mold on the floor joists in the basement,” which he speculates is leftover from before we bought the house. It does not appear to be affected air quality or spreading.

So here’s the question: How far do we go? Before we moved into the house, a couple years ago, we had basement mold remediated. That mold had a clear source; the previous owner had left a ground-level basement window open during Superstorm Sandy—evidently she thought the basement would be better with “circulation”—and water poured through the window, leaving ickiness in its wake. Remediating that mess was like those scenes at the end of E.T.: The Extra-Terrestrial. You know, when scientists and government officials are obscured in protective gear, and plastic sheets cover everything. That was how our house looked, to annihilate the Sandy mold. You can imagine the cost.

Do we do that again now, to go after some petty bit in floor joists not affecting air quality? Not at this moment, no. I’m going to put that mold onto the “monitor” list instead. Autism recovery, however you approach it, can be a highway to the poorhouse. Chasing after a bit of mold, right now, seems like a voluntary move into the fast lane on that highway.

Martin, as Donald Duck, trick-or-treating with friend.

Martin, as Donald Duck, trick-or-treating with friend.

Hot Summer in the… in the… Suburbs

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Autumn temperatures have descended upon New York. Finally. Summertime is better now that we live outside the City, but even so, I’m no fan. I don’t like heat. I don’t like air conditioning. I don’t like feeling pressure to fill long evenings. I don’t like the months without the New York Rangers, although the near back-to-back scheduling of the French Open and Wimbledon, followed later by the U.S. Open, eases my Rangers-related anxiety.

Let’s celebrate the opening of hockey season with a look back at what Adrian is calling the “summer of changes”:

  • At the beginning of summer, Martin liked to spend time in our pool but refused to jump in, put his head under water, or do any actual swimming. He insisted on wearing a full life vest, and he panicked if approached, because he feared someone might try to dunk him.

During an August visit to Texas, he spent hours lounging in my parents’ pool with Grandpa. I’m not sure exactly what changed, but one day Martin and Grandpa were dipping their heads under water together. Soon thereafter, Martin was going under water alone (and, in Martin fashion, demanding applause when he surfaced). He was also, with Grandpa’s help, pushing off the poolside and making rudimentary attempts at swimming.

Back home, Martin’s cousin Mandy, who can already turn somersaults and do handstands under water, came to stay with us for a few days. Martin hates to be outdone by Mandy. He started going deeper under water, sometimes headfirst, and kicking his way back to the surface. After Mandy left, we had a visit from a 10-year-old family friend who is afraid to jump in the water. Martin seized the chance to outdo an older child and made his first voluntary, if hesitant, leap into our pool. The very same afternoon, Martin was allowing Adrian to toss him—“one, two, three!”—from the deck into the pool, plunging under water, swimming five or six feet before surfacing, and immediately demanding, “Do it again, Daddy! Throw me in the pool again!”

  • The theme of Martin not wanting his head under water has been constant for years, since before we knew he had autism. When he was a baby, Martin and I took a “Mommy & Me” swim class. The exercises included tipping baby backwards until he was floating on his back and, with the instructor’s help, having baby dog paddle a short distance to his mommy. The tipping exercise terrified baby Martin; as soon as the back of his head touched the water’s surface, he would scream. (“Don’t worry,” said the instructor. “Some kids just take longer to enjoy the sensation.”) The dog paddling never worked, either; Martin panicked when released into the water and flailed instead of making the paddling motions.

Later, through HANDLE therapy and Anat Baniel Method, I learned about Martin’s primitive reflexes and why they might not have developed properly. Those infantile pool shortcomings were warning signs.

Until this summer, Martin retained the fear of lying on his back in water, including in the bathtub, where he would insist on sitting up or, at most, lying on his side with his head propped on a crooked elbow. Not long after he started swimming under water, I found him lying on his back in the bathtub, his head submerged up to his ears. “What are you doing there, Martin?” I asked. He lifted his ears out of the water and responded, “Oh, I’m just relaxing, Mommy.”

  • Of course, a kid who doesn’t like his head under water doesn’t like to shower. We have a full-spectrum infrared sauna at home. A key part of the sauna routine is showering upon exiting, to prevent the skin from reabsorbing toxins that may have been excreted through sweat. Until this summer, the shower was such a chore that I dreaded using the sauna with Martin. As Martin’s pool confidence increased, Adrian started dragging him into the shower after swimming (which I didn’t love, because I prefer to give Martin an Epsom-salt-and-baking-soda bath to detox after swimming, but sometimes you have to let father and son have their time). Showering got easier and easier, and correspondingly so did using the sauna. It’s a kind of trade-off: fewer detox baths for more sauna time.
  • Early in the springtime, we bought Martin a new bicycle. He’d grown so much over the winter that his old bicycle, which had training wheels, looked like a circus toy underneath him. We decided to be bold and optimistic with the new bicycle and not pay to have training wheels installed. For a few months it seemed like maybe we’d been too bold and optimistic. Adrian and I made almost no progress trying to teach Martin to ride. It was frustrating. By mid-July, we were ready to throw in the towel.

Martin participates in a terrific sports-and-training program for special-needs kids, which focuses on playground skills like shooting baskets and playing kickball. When I found out that that the head trainer was also running a bicycle-riding clinic, I signed Martin up immediately. The professionals possess magic skills that Adrian and I lack; within the first hour-long lesson, they had Martin up and riding. It took a few more lessons before Martin could push himself off and pedal together, or stop without tipping over the bicycle, and it took practice with Adrian before he could successfully use the hand brake to slow himself down instead of stopping suddenly. As of today, Martin still can’t stand up and pedal, as to power himself uphill. But that will come. Meanwhile, he rides four- and even six-mile journeys with Adrian.

Monday evening, as we pulled in the garage, late for dinner, with homework yet to be done, Martin said, “I’m just going to do some bicycling riding now.” I couldn’t allow that. But it was nice that he wanted to.

  • Shoe tying. This is another area where Martin didn’t want to be outdone by Cousin Mandy, and where we sought professional assistance. Cousin Mandy can tie her shoes already. During a car trip together in August, she decided to try teaching Martin. That didn’t go well. Eventually tears were involved. Nonetheless, it put the idea in Martin’s head, and after Mandy was gone, he asked me to help him learn. I tried. I failed. (It’s a good thing I don’t homeschool. One day Martin will agree.) The first week of school, I wrote a note to Martin’s occupational therapist listing shoe tying as one of our goals for the year. You guessed it: Within a week, the OT had him tying his shoes. Within two weeks, he’d mastered the double knot. Now Martin is concerned with learning to tighten laces sequentially and also tie “big laces,” because he wants to be able to—lace up his hockey skates.
  • That’s right. Martin is learning to play ice hockey. We had planned to try him this fall in a Mites league, or even down one age group on a Mini-Mites team. But he had no skating experience, and many of the kids on those teams have already been skating since age two or three, and suiting up for hockey for at least a full season, if not two. Adrian and I weren’t even sure whether Martin would like playing hockey. We didn’t want to frustrate him on the ice with kids much, much more skilled than he is. So instead we signed him up for private lessons. He loves the skating so much that now he wants to take an extra lesson each week, in order to reach stick-handling skills sooner.

I doubt that Martin is destined for hockey greatness. I was satisfactorily athletic as a child, competing in swimming, soccer, softball. Adrian, by his own reporting, was an utter flop at everything except skiing. We are hardly the type of world-class athletes that tend to produce other world-class athletes, and Martin is getting a later start, both in age and skill development, than most players.

Nevertheless, please take a minute to contemplate what it means to me to see my son on skates. If you read this blog, you know I love hockey. When Martin, my only child, was diagnosed at age two with mild-to-moderate autism, my dreams of raising a hockey player flickered, and maybe fizzled. Five years later, with the help of biomed and therapies, Martin is tying skates, wearing hockey gear, and getting ready to start learning stick-handling skills. Yes, he is.

Having a summer of changes is a beautiful thing, because “change” is not usually a development that sits well with a child on the spectrum.

And now, the summer of changes has drawn closed. Halloween is nearly upon us. Martin wants to be Donald Duck this year, which is a real problem; the duckier costumes are made for infants, small children, and (not sure what this is about) adults. Apparently no one between age five and age 18 is supposed to be Donald Duck. For my tall seven-year-old, I’ve had to resort to a “pajama costume.”

Maybe next year we’ll have the “autumn of more-grown-up costume ideas.”

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A&A Part II: Formaldehyde

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When we moved to the suburbs, June 4, 2013, we bought Martin a new bedframe, a twin-size rally car frame. Because of wheels, bumper, and built-in shelf, it occupied more space than the plain, unfinished hardwood frame he’d had previously. In the City, his bedroom was too small for a fancy rally frame; the suburbs have some advantages.

We did not, however, replace Martin’s mattress, which was an expensive organic mattress that I’d ordered two years earlier from California. A bedframe is one thing. An organic mattress does not get replaced so willy-nilly.

Martin never adored the rally bed, even though he and Adrian had picked it out together on-line. I think the metal headboard and side rails were cumbersome. Martin still tends to toss and turn at night, and to throw his limbs over the bedside. I would hear him at night, banging his arms and head on metal. Plus, the metal was cold. I didn’t love the rally bed, either. At the time, I still had to pick Martin up, out of bed, while he was sleeping, to take him to the bathroom or help him wake up. As he grew bigger, it was hard to lift him over the rails without straining my back.

What I did know was that the rally bed was safe. I’d researched the materials of which the frame was made, and the manufacturing processes, and I felt comfortable that they posed no particular dangers.

This June, 2015, Martin decided to break up with his rally car bed. The end of their two-year relationship came suddenly. Martin, for a couple weeks, had been having trouble falling asleep. One night, after an hour or two of talking to his stuffed animals, giggling, dancing down the hall to the potty, and calling for drinks of water, Martin asked to sleep in the queen-size bed in the guest room. I can’t remember whether I acted out of frustration, or exasperation, or hope, or some combination; in any event, I let him climb into the guest bed, and he was asleep within minutes.

The next night, the same scenario replayed. Martin stayed awake, busy as a bee, until finally he finagled permission to move to the queen-size bed in the guest room. The night after that, he skipped the rally bed altogether and asked to do bedtime in the guest room. He also stopped having trouble falling asleep. I don’t know why. Maybe the “trouble” was intentional, a ploy to try a different bed. The explanation he gave was, “Now that I’m almost seven, it’s just easier to sleep in a big bed.” That’s exactly what he said: “It’s just easier.” The little cad.

After Martin had been sleeping, without issue, in the guest room for more than a week, Adrian and I devised a plan. I didn’t want Martin to continue sleeping in the guest room. Unlike his bedroom, the guest room isn’t coated in EMF-blocking paint, isn’t right next to my and Adrian’s room, and doesn’t have his name on the wall in wooden block letters. On the other hand, Martin wanted a bigger bed and seemed to be sleeping better in a bigger bed. His own bedroom, though bigger than his City bedroom, is not wide enough to accommodate a queen-size bed. Adrian and I decided the solution was to offer Martin a double bed for his upcoming seventh birthday, and to bill the gift as a “big-boy bed.” In fact, we would give his bedroom a mini-makeover, changing the Curious George theme to an outer-space theme, because he’s into planets and moons.

(Actually, we offered Martin a list of new room themes to choose: music, outer space, books and writing, Big Hero 6, sports generally, or the New York Rangers. I was pulling for the Rangers. I was silently willing him to choose the Rangers. But it wasn’t meant to be. Martin likes planets.)

A big-boy double bed needs a big-boy double-size mattress, and for Martin it has to be an organic mattress. To make our big-boy-bed plan work, I would have to bite the bullet and shell out a lot of money for a new organic mattress. I found an organic mattress showroom not too far from us, drove there one morning, asked questions, compared choices, and ordered a satisfactory option. I also purchased a waterproof organic mattress cover, for the various mishaps that can occur in a seven-year-old’s bed. Then I set about procuring two double-size organic cotton sheet sets.

By the time all that was totaled, I was not in the mood to spend more money, and I suppose I let down my guard. I ordered an inexpensive bedframe, with storage drawers underneath, from wayfair.com. It arrived quickly, and with Samara’s help, I spent three days assembling the thing. (Adrian has myriad talents. The use of tools and hardware is not one of them.) The new organic mattress came just in time for Martin’s birthday. I filled the bed’s drawers with Martin’s stuffed animals, covered the mattress in organic sheets, switched the Curious George wall decals for outer-space wall decals, and hung up posters of the planets and moons. Martin loved his birthday gift. He immediately moved from the guest room back into his own outer-space room, into his new big-boy bed. That was at the end of June.

Martin’s allergy troubles began in earnest over the summer. As part of our search for answers, I asked our environmental consultant to check for mold, mildew, or other triggers to which Martin might be responding. Almost immediately, he found elevated levels of formaldehyde in Martin’s bedroom. Formaldehyde! It seemed to emanate from—did you guess this?—the cheap bedframe I’d bought online after spending so much on the organic mattress and linens. Martin has been exposed to formaldehyde. Way to go, me. Worse still, the consultant theorizes that the expensive mattress may have absorbed enough formaldehyde from the frame to pose an ongoing problem.

As soon as my parents, who are visiting from Texas, depart, Martin is moving back into the guest room and I’m throwing away—yes, throwing away, because although my first choice is to donate, I refuse to pass an unsafe product to any child—the bedframe. The double-size organic mattress will move to the basement in the hopes that it can air our enough to be safe again. (We have a well-ventilated basement with windows.) This time I will do my research and spend the money on a truly safe wooden bedframe, then have the organic mattress retested and hope it has become salvageable.

Remember the organic twin-size mattress that we brought with us from the City, the one that was on the rally bed? I didn’t have the heart to let that mattress go. It was too expensive. In my office I have a daybed with a trundle. I moved the twin-size organic mattress onto the trundle frame, under the main bed, thinking that we might one day put it to another use. Then my cats discovered that they could crawl underneath the daybed cover, onto the trundle mattress, and be tucked into their own flat cave between the trundle and the main bedframe. Before I even pinpointed to where the cats were disappearing hours at a time, they had left so much fur on the twin-size organic mattress that I wonder whether it will ever be suitable for humans again.

Way to go, me.

Martin doodled this on a homework sheet. I can't be sure, but I'm hoping it's some sort of representation of Henrik Lundqvist.

Martin doodled this on a homework sheet. I can’t be sure, but I’m hoping it’s some sort of representation of Henrik Lundqvist.

A&A Part I: The Issue

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A couple months ago I wrote about mysterious allergic reactions Martin was having: puffy watery eyes, runny nose, and (later) spots on his face. We suspected maybe a food was the culprit and also started searching for environmental culprits. We also started treating for chronic Lyme disease. The spots have not recurred.

We have, however, had more sneezing and watery eyes. Then, last month, yet another symptom arose. My mother-and-law and I took a day trip with Martin to “Fun4All,” an indoor playscape way out on Long Island. We sat in the snack-bar area while he climbed, bounced, and looked for a friend. Every so often Martin appeared at our table, drank some water, and scampered off. I noticed he was sweatier than usual, and breathing heavily. I was happy that he was exercising so much.

After 90 minutes, Martin was too sweaty, and breathing too hard, and his eyes were watering, and he was coughing. I asked if he wanted leave, and he said he did. Whatever reaction he was having was severe enough that I started looking for triggers. I’d noticed a kind of chemically smell, so I took a picture of a sign posted in the restroom, which said that Fun4All is cleaned with “Simple Green D Pro 5,” a “one-step cleaner, disinfectant, virucide, fungicide, sanitizer, mildewstat & deodorizer” that is “hospital grade.” (In my world, that sounds scary. Very scary.)

We exited Fun4All. In the parking lot, I realized that Martin was wheezing. He was having a full asthma attack, like the attacks that strike my older brothers, who are asthmatic. I used my iPhone’s voice-memo feature to record Martin’s labored breathing, so I could share it with his pediatrician. Then I loaded him into the car and gave him a bottle of water. The wheezing faded within twenty minutes.

That was the first asthma incident. In the four weeks since, Martin has experienced half a dozen more, each time after exercising: ice skating lessons, bicycle riding, playground. He’s also coughed, a lot, had a generally runny nose, and breathed heavily at night.

The search for answers entered high gear. I contacted our environmental consultant to retest our house for mold and mildew, which we also had done before we bought the house. I talked to Martin’s autism specialist (his biomed doctor), who advised me to bring Martin to his pediatrician for traditional allergy testing. The pediatrician also sent us to a traditional allergy/asthma specialist, to evaluate the results of the pediatrician’s tests and to conduct additional tests. I requested a phone consultation with Martin’s homeopath.

Soon we were armed with an albuterol inhaler as well as a nebulizer for bronchodilators. (I don’t like to use pharmaceuticals with Martin, or with myself for that matter, but when it comes to breathing, I am not willing to mess around.) We also found, I hope, some answers.

This is the first of four posts on A&A, allergies and asthma. The next three will cover the potential triggers we’ve discovered. I hope that, in a few months, I will be able to write a post about resolving the Martin’s A&A.

I’m not happy about any of this. We’ve been fighting autism for years now. I don’t need any more A’s on my plate.

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Afterward

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It’s 3:25 a.m. Obviously, I’m awake. Jet lag. Adrian and I are on vacation in Turkey (far from Ankara, where the horrific suicide bombings occurred Saturday), celebrating our anniversary. Martin is home with my parents.

As I lie awake, my mind wanders to this question: What will I do with myself when Martin is recovered enough to be close to typical? This autism journey has consumed my life. What will be my next act?

These types thoughts tend to happen on vacation, when for a change I’m seeing the forest, not focused on the trees like dinner tonight, ordering supplements, planning travel to doctors, trying to keep current on science. Twelve months ago, in a post started on vacation in Germany, then finished back home, I wrote about finding the “me” in Martin’s recovery, about trying to have some life of my own. I have been improving at that, writing more (non-blog) and working 20 hours per week. Still, bio-med life feels like a treadmill. Pauses are rarely allowed.

I don’t know what my next act will be.

But I’m looking forward to it.

Istanbul. This scenery, giving me pause.

Istanbul. This scenery, giving me pause.

Why Can’t We Cross the Finish Line, the Nonexistent Finish Line, Together?

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Bobby [a pseudonym] is eight years old and, according to Martin, his best friend. Bobby and Martin met in special-needs preschool four years ago, when Bobby was four years old and Martin was three. That’s also when I met Bobby’s mom, my friend Stacey [a pseudonym]. Bobby also has autism, and Stacey started biomed with him the following year, when Bobby was five.

When we all met, Bobby and Martin were superficially alike, with corresponding language limitations, emotional dysregulation, and lack of joint attention. They both had been classified “mild-to-moderate” on the autism spectrum. Beneath the surface, however, Martin and Bobby have entirely different health issues. Martin, simplified, has gut dysbiosis, mitochondrial processing issues, recurrent candida overgrowth, and suspected viruses hiding in biofilm. His immune system used to exist in overdrive, so that he was “never sick.” Bobby, simplified, has persistent mycoplasma pneumonia, environmental allergies, parasites, and PANS. His immune system is so depressed that he is “always sick.”

Stacey is given to panic. That is, she remains more susceptible than I am to the rollercoaster ride that is autism recovery. It is therefore possible that I did not completely, wholly, 100% believe her when, during the past few months, she’s said that Bobby isn’t doing as well as Martin, and that she’s not even sure they are still making progress in resolving his health issues.

Two weeks ago, Martin and I had a rare opportunity to hang out with just Stacey and Bobby. After a few hours together, and with regrets, I had to agree with Stacey that Bobby is not doing as well as Martin. At the restaurant, Bobby impulsively put his hands in others’ food and bolted from the table. When we walked in town, he disappeared into store after store and cried about having to go to school the next day. On the playground, he couldn’t swing by himself, aggressively hugged strangers, and melted down when it was time to leave. Martin, meanwhile, was perseverating a lot but otherwise looking pretty typical.

Know that I discussed all this with Stacey, and she gave me permission to write this post. I would not blindside a friend on-line, pseudonyms or no.

The afternoon’s low point, for me, came when Bobby was sitting on the sidewalk biting his own arm and I asked myself, “Is Bobby still the right best friend for Martin? Should Martin spend time with friends who challenge him more?” I would never want a mother to question whether Martin is the right friend for her child. I want Martin to be accepted by all kids, typically developing or otherwise. I was shortsighted and cruel to consider, even for a moment, directing Martin toward a higher-functioning friend. I recognized immediately that I was wrong and tried to turn the situation positive by asking Martin, “Your friend is having a difficult time. How can you help?” Still, there was no denying what I’d felt.

There are plenty reasons why, even though Stacey works just as hard as I do, Bobby’s recovery might be lagging behind Martin’s. I had the advantage of starting biomed when Martin was just two-and-a-half; by the time he met Bobby six months later, they were developmentally akin, even though Bobby is a full year older. Stacey didn’t get to start biomed until Bobby was five years old. The boys’ underlying issues are so different. Not all kids respond well to biomed, and Bobby may be one who doesn’t.

Three years ago, I wrote on this blog:

When I hear about other ASD kids making more progress, or faster progress, than Martin, it gives me hope. It also makes me angry and resentful. Why not our turn? Why not yet? What more do I have to do?

I ask myself, Is that still true? Do I still feel angry and resentful when other kids make more progress?

No. I don’t think so. Consider my friend Lakshmi and her son, Partha. I’ve written about Lakshmi before. Partha suffered a regression (lost all language) following a vaccination. We first met a few years ago when Lakshmi contacted me through this blog, and Partha was developmentally at about Martin’s level. Partha is recovered now, except for minor quirks; his mainstream classmates don’t know he had autism. That is much further along than Martin. When I see Partha and the progress he’s made, I feel happy for Lakshmi and inspired by what she’s accomplished. No resentment. No anger. Only the desire to continue sharing ideas over a cup of coffee. The same goes for my feelings about the other three recovered boys I know, as well as the kids I “know” through on-line chatter but have not met.

I’ve reached my current sanguinity, likely, because Martin has made clear, significant, and undeniable progress toward neurotypicality. In the same post as the “angry and resentful” admission, I mentioned that I became frustrated with Martin for spectrum behaviors like skipping, chewing on a straw in the corner of his mouth, and letting himself fall slack. In a later post, I wrote about Martin whining continuously oh mommy oh mommy oh mommy for 30 minutes, and screaming all the way from our apartment to JFK because Adrian suggested that he change jackets. We are nowhere near that place anymore. The spectrum behaviors that frustrate me today are more like talking too loud in church, laughing at the wrong time, and taking too long to finish breakfast. Almost every day, my confidence increases that we will achieve something like recovery.

I asked Stacey how she feels when she sees Martin or Bobby together, or when she sees Partha. (She knows Lakshmi and Partha too. We biomed moms all end up pals.) Stacey said that children who are recovering faster than Bobby make her depressed and anxious. She worries that she isn’t exploring the right treatments, and asks herself what more she can do (as I once asked myself, and sometimes still do). She fears that a mythical window will slide closed, separating Bobby forever from recovery.

And how does she feel when she sees a child who’s made no progress, who hasn’t taken any steps toward recovery, whose behaviors are more pronounced than Bobby’s, who lacks all language? She said, “I try not to assume the emotional burdens of others’ journeys. I want the best for them. I focus on Bobby.”

I admire Stacey for being hopeful for other kids while not letting their condition tint her outlook. I still tie myself to others’ children. Bobby’s performance at our play date has upset me terribly. I can’t feel as good about Martin’s recovery when I know not everyone is doing as well.

Kind of a funny shot of Martin, acting pretty typical while enjoying calamari in a restaurant.

Kind of a funny shot of Martin, acting pretty typical while enjoying calamari in a restaurant.

Once upon a time, it was more difficult for me to witness biomed kids passing Martin. Today, I think, it has become more difficult to see the ones who lag.

Pulse Admission

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“Admit it,” said my friend Kevin, gesturing as if a grand proposition were forthcoming. “Admit that you like listening to The Pulse.” He was referring to SiriusXM Radio’s channel 15, The Pulse, playing “hits from the 2000s and today.”

I hedged. “Well—”

“Admit that when you’re flipping through your favorite channels, your Bridge and 70s on 7 and 80s on 8 and Classic Rewind, you also check to see what’s on The Pulse. Admit that you do it when Martin isn’t even in the car. Admit it!”

Kevin phrased the accusation exactly right. I had no grounds for denial.

“Fine,” I said. “It’s true. I check what’s on The Pulse. I like some of the songs on The Pulse. Leave me alone.”

I was out to dinner with Kevin and his wife, Stacey. We were in Baltimore attending Natural Products Expo East, a tradeshow and conference for organic and natural foods and beverages. Kevin and Stacey also have a son recovering from autism. I was telling them (1) the good news that Martin is finally taking an interest in pop culture, and (2) the bad news that this new interest means he insists on listening to The Pulse in my car, when he used to be perfectly happy with The Bridge, “mellow classic rock and ’70s folk rock.”

Ah, pity the child of older parents. Martin’s cousin Mandy was born two-and-a-half months after he was. Mandy’s mother, my sister, is 14 years younger than I am. When it comes to pop culture, I’m thinking Mandy has it a lot better than poor Martin.

Over the past year, Martin has started noticing what his peers are doing, and wanting to do the same. In the spring, when the weather warmed, I tried sending him to school without a jacket. Despite the sunshine, he insisted on wearing a jacket. Why? “Because my friends are still wearing their jackets to school.” I wrote about when Martin wanted to carry a backpack to the JCC because the kids who came from school without parents had backpacks. Martin has never seen Despicable Me, but he collects toy Minions. He’s never played Angry Birds, but he loves anything with an Angry Bird decoration.

One weekend over the summer, Martin’s classmate Jack stayed at our home. Jack, evidently, was much better versed in current music and television than Martin. Friday afternoon, as we drove from school, Jack started requesting artists and songs. Taylor Swift. Maroon 5. Duran Duran, in time-warp. At a loss, I searched the satellite stations until I found The Pulse. When we arrived home, Jack asked to watch the Disney Channel and knew just which programs he liked. Martin, whose previous television experience ranged from Rangers games to U.S. Open tennis to continuous loops of the BBC’s Pride and Prejudice, eagerly watched Disney Channel too. Monday morning, I drove both boys back to school. From the backseat resounded not one but two voices: “Taylor Swift! We want Taylor Swift!” Since Jack’s sojourn in neustra casa, Martin has become a connoisseur of all things Pulse and Disney Junior.

Which means that I—who previously resided happily ensconced in the 1970s and ’80s—have listened to a lot of Pulse music, too. And fine, I admit it. I have encountered songs I like. Nick Fradiani’s “Beautiful Life.” Imagine Dragons‘ “I Bet My Life.” Andrew McMahon in the Wilderness’s “Cecilia and the Satellite.” I’ve even heard a few lyrics that resound with our autism journey. In “Uma Thurman,” Fall Out Boy’s frontman Patrick Stump sings, “I slept in last night’s clothes and tomorrow’s dreams // But they’re not quite what they seem.” Heck, that’s me. That’s me every day.

I guess that’s part of having a kid: catching up on pop culture. It’s a totally typical thing.

Anyway, I have to go now. Martin is exhausted and grouchy. He was up late last night, because he wanted to watch Andy Grammer on Dancing With the Stars.

We blaze the night
With all we’ve been waiting for
All this time
Reaches such great heights
Gives us just one perfect night
To say oh what a beautiful life

Oh what a beautiful life.

—Nick Fradiani

Leave It. Not the Yes Song That I Love. A Different Kind of “Leave It”

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I am compelled to write again on the topic of guilt.

I’ve acknowledged before that I feel guilty for my son’s autism. I know I’m not alone. The Thinking Moms’ Revolution ran a post on this topic last year, titled “How I Gave My Son Autism.” That post exposed a reality: Many mothers, when they find out the health conditions that underlie autism and the environmental factors that may trigger them, feel guilty for not knowing more, for not doing more to prevent autism from invading their children’s lives. I am one of those mothers.

I am also tired of defending my right to feel guilty. Here’s a simplified version of a conversation I had this week:

Friend:

“Why don’t you weigh in publicly on some of these debates, like vaccine safety or antibiotic use?”

Me:

“They are tough issues, and I feel like everyone is so polarized and aggressive. I need my strength to recover my son and don’t want to spend it on defending myself.”

Friend:

“You’ve learned a lot, though. Why not share it?”

Me:

“Someday I will, when Martin doesn’t need me as much. Now is not the time. Understand also—all that I know now figures into the guilt that I feel for what I didn’t know when Martin was a baby. It’s painful for me to share that.”

Friend:

“Wait! You know you shouldn’t feel guilty, right? You know it’s not your fault that Martin has autism? Tell me that you know that.”

This issue arises constantly with well-meaning persons who are not biomed parents. They hear that I experience guilt, and they rush to reassure me that I have nothing to feel guilty about.

While I can’t fault anyone for wanting to make me “feel better,” random reassurances that I bear no guilt don’t make me feel better. They upset me. I know things. These things make me feel guilty. I have this feeling. I have a right to feel it. The emotion is mine to resolve (or not) on my own terms.

Biomed parents get it. When I speak with another biomed parent about feelings of guilt, the response is usually something much closer to, “I get that. How are you coping? Want to brainstorm ways to channel that into positive action?”

We don’t get to walk around telling people what emotions they should or shouldn’t feel. I, personally, become uncomfortable when a mother says that her child’s autism is a “gift.” But I don’t respond, “Wait! You know autism isn’t a gift, right? You know you shouldn’t feel like your child is lucky?” I respond, “Tell me more, if you want to.” And then, if she wants to talk, I listen. If she doesn’t, I leave it alone.

The guilt that I feel is not harmful to my relationship with Martin. To the contrary, it prompts me to do my best for him, however I can.

So, please, leave it alone. That’s a good way to help.

It Used to Be Fear

Posted on by findingmykid
2

Over Labor Day weekend we visited Dr. Zelinsky, near Chicago. It was an easy day trip. Martin and I caught a 10:30 a.m. flight from LaGuardia to O’Hare. My friend Chris picked us up at O’Hare, we had a delicious brunch at Prairie Grass Café, Chris worked nearby while Martin and I were in Dr. Zelinsky’s office, and then we stopped at a playground on our way back to O’Hare.

Dr. Zelinsky had many perceptive observations about Martin’s development and brain functioning; she always does. Enough said. This post isn’t about Dr. Zelinsky. It’s about the playground.

The playground was random, selected by me and Chris from Google Maps as we drove. It turned out to be lovely, tucked in a wooded suburban acre. While Chris looked for the parking area, Martin and I walked a path to the swings and slides. He asked whether other kids would be at the playground.

“I don’t know,” I replied. “Maybe.”

Martin has long avoided kids he doesn’t know, especially in contexts like the playground, which can be overwhelming. Playground kids clump and run together, and Martin can’t keep up. I assumed he was worried and wanted the playground to himself.

One girl, it turned out, was there, sitting on a swing.

Martin investigated some climbing equipment. After just a moment, he walked over and sat on the swing next to the girl.

“Hi there,” he said. “I’m Martin and I’m seven years old. How old are you?”

The girl was seven too. She asked Martin where he goes to school. He responded—she didn’t recognize the name, of course, since we were in Chicago and Martin goes to school in New York—and then he asked where she goes to school.

That’s right. A reciprocal question.

“The Ryan School,” the girl answered. Or something like that. It was hard to hear her.

“Where?” Martin asked, then, when she repeated and he still didn’t get it, “Where?”

The girl’s dad, who was seated on a bench near the swings, turned to me and said, “She’s got a bit of a lisp that makes her hard to understand. We’re working on it.”

It’s not you kid. It’s mine. First time anyone’s said that to me.

“He’s not going to know the school anyway,” I said. “We’re just visiting from New York.”

We shared a laugh. The kids said a few more kid things, and then some sort of who-can-swing-higher competition ensued. Or at least Martin treated it as a competition.

Around that point, I realized something: Martin hadn’t asked whether any kids would be at the playground because he wanted to avoid them. He’d asked because he wanted to play with them.

The realization was confirmed the following week, when I took Martin to an indoor playscape near our home and he said, “I’m going to look for some kids to make my friends.”

The girl in Chicago eventually lost interest in Martin, and he didn’t succeed in finding any kids to make his friend at the playscape.

Nevertheless, he was seeking kids out, instead of avoiding them. That’s progress.

Progress.

Martin at the playscape, looking for friends.

Martin at the playscape, looking for friends.

 

Okay, this wasn't taken at any location described in this post. But I couldn't resist! It's Martin and a buddy at an amusement park.

Okay, this wasn’t taken at any location described in this post. But I couldn’t resist! It’s Martin and a buddy at an amusement park.

Money

Posted on by findingmykid
5

I call myself a fiscal conservative and social libertarian. I support capitalism. I think that, ultimately, the self-interest that capitalism engenders moves “the group whole” forward. Capitalism isn’t an ideal system, but we don’t live in an ideal world. Altruism, community spirit, and a peaceful life unfortunately don’t provide sufficient motivation. Instead, we—we humans—like to compete. A properly regulated and administrated capitalist system should enable workers to choose how they want to profit: financially, with free time, through notoriety or renown, in job satisfaction or altruism, &c. A properly regulated and administrated capitalist system, I think, functions best on the shoulders of an educated populace, and a profit engine that responds to its demands.

I’ve said before: I’m wildly simplifying. A blog post allows only so much depth.

One particularly American notion that I like is the marketplace of ideas. An arena for vigorous debate enables participants to consider and reject, to separate the (non-glyphosate, organic) wheat from the chaff, to ponder what makes stupidity stupid.

Congress shall make no law . . . abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances. Boo-yah.

I also believe that what’s happening to our health, to the immune systems of our children, to the neural functioning of our elderly, results from profit motivation. From greed. Glyphosate, genetically modified organisms, inadequately scrutinized vaccines, a world blanketed in electromagnetic radiation—some part of these developments might arise from a desire to feed the world or protect health or push us forward, but the greater instigator is financial advantage. (Don’t go all frenetic on my implicating this partial list of immunity bandits. I’ve admitted that I don’t science. I’m figuring out what I can, from the resources I have. I’m working on a blog post that lays out my own understanding of glyphosate and its role in autism rates.) Profit-seeking is running amok and trampling the vulnerable. Not the traditional vulnerable, like the poor and migrants. The newly vulnerable victims of our own success.

Run Away from Autism Recovery! It’s Like the Plague!

Last month I invested ten minutes reading a blog post titled “Autism: Whom to Trust, and Whom to Run from Like the Plague.” The author’s thesis is that autism is not treatable biomedically, and that any organization that supports treatment of autism is suspect. More than suspect, actually. TACA, AutismOne, Generation Rescue, they are all really, really bad. Like, plague bad.

The blogger implicates even Autism Speaks, which is a gigantic and wealthy organization that does not advocate biomedical treatment of autism. Autism Speaks concerns itself with raising money and “awareness,” as if, with ASD rates what they are, we need “awareness” more than research. The blogger’s beef with Autism Speaks is that “Only recently, Autism Speaks reversed its stated position on vaccines. For two years prior, they claimed that there was a connection between vaccines and autism.” In a move that marks the blogger as a likely outsider to the autism community, she mis-cites the slogan “Autism Speaks doesn’t speak for me.” She apparently attributes that slogan to (1) “actual autism advocates” who are angry that Autism Speaks, once, mildly, gently, suggested that vaccines may play a role in the development of ASD symptoms, or (2) persons on the spectrum who self-advocate against treatment. Quite the contrary: “Autism Speaks doesn’t speak for me” comes from families like mine, the ones who are angry that Autism Speaks raises the lion’s share of resources but doesn’t address health or cure.

The blog I’m talking about is called Dawn’s Brain and written by “Dawn Pedersen,” who describes herself as “a science advocate, web designer, educator, artist, and mommy.” Her qualifications are “a BA in fine art, an MA in education,” and “an AS in biology” that she will “complete . . . this fall.” As you know, I’m not a medical professional or an autism authority. Still, I (Martin’s mom) am, um, a “science advocate” (when it comes to the science behind immune disorders that manifest as autism), an “educator” (when it comes to addressing the immune disorders that manifest as autism), a lawyer (no asterisk; I just am), and a mommy. I have several impressive-sounding, albeit functionally limited, degrees: a B.A. in religion, magazine writing, and German literature; a master’s in religious studies; an M.F.A. in writing. I have a somewhat-more-useful juris doctorate, and have passed more than one bar exam. Plus, even though I don’t science well, I am smack in the middle of a Ph.D. in autism recovery studies from the University of Martin and His Doctors. I therefore declare myself even more qualified than Dawn Pedersen to talk about autism.

We Are Polarized

Given that Dawn Pedersen seems to be an outsider to the autism community, whose major qualification for assessing that state of autism research is working toward an associate’s degree in biology, it is fair to ask what’s motivating her to deride promoters of biomedical recovery.

I read through the comments to the “Avoid Like the Plague” post. Consider—

Comment from a Reader Named Carmen:

I’m sorry, whoever in the world does not think that gluten/dairy are inflammatory foods that in turn have a negative neurological effect on humans in general but even more so on Autistic people [is] in denial and not looking at the evidence. . . . My 3 year old is autistic and I have seen [LEAPS] and bounds improvement with his overall happiness with these diet changes. . . . Maybe it doesn’t work for every kid/person and it certainly doesn’t “cure” autism but it absolutely eases some of the undesirable (for my son) symptoms. I could go on and on. I guess you’re also saying that refined sugar, chemicals in our food, dyes and gmos don’t make things worse[—]asinine!

Reply from Dawn Pedersen:

All our foods are made of chemicals. Refined sugar breaks down into glucose in our digestive system like any other carbohydrate. There is nothing wrong and everything right about genetically modified foods.

Do you have a plausible explanation for how nutrients can travel backwards in time, to reverse differences in cognitive development in the womb?

You are promoting the very nonscientific explanations I am decrying. You’re promoting ideas that are victim-blaming, and without evidentiary merit or plausible mechanism.

More comments pile on, criticizing Dawn Pedersen for dismissing the experience of an actual autism parent, asking Dawn Pedersen if she’s heard of the CDC’s William Thompson, thanking Dawn Pedersen for her list of organizations to avoid like the plague because it actually provides a handy chart of good resources. To these comments, Dawn Pedersen doesn’t respond.

Her blog, it seems to be, represents a trend: polarization through outright dismissal of any view that isn’t our own.

Polarization: No Open Exchange, No Transparency

Polarization is the opposite of transparency and open exchange of information and ideas. I heard a commentary on NPR opining that it is dangerous and unnecessary even to present vaccine-safety concerns, because the CDC’s vaccine views have no valid counterpoint. NPR is wading into paternalistic reporting, discerning what Americans need to hear and disregarding the rest. (Sorry to pick on NPR. Every mainstream outlet does an abysmal job covering vaccine safety. Investigative journalism? Not. There is even a TED talk arguing, in part, that parents with vaccine concerns should not be heard.) According to recent polling, 52% of American adults are unsure whether vaccines can result in autism, and another 6% say that vaccines can result in autism. If 58% of Americans believed that or were unsure whether the earth was flat, I would want to hear their views. I’m pretty sure they wouldn’t win me over, but I would listen. Today, any journalist who dares mention that Gardasil seems to be leading to injuries and deaths, or that unvaccinated children might enjoy better health overall, or that the Vaccine Injury Compensation Program does compensate children who develop autism faces public excoriation. We’ve left open exchange in the dust.

What about transparency? What motivates Dawn Pedersen? Is she just really, really fired up about quashing any hope of autism recovery, even though she doesn’t seem to have a child on the spectrum? A SeaWorld employee was recently found to be posing, for years, as an animal-rights activist and trying to incite violence within peaceful protests, to make the activists seem dangerous. Monsanto evidently has a behind-the-scenes department devoted to “debunking” science that suggests glyphosate or GMOs are harmful. With all the subterfuge in our world, I wonder what is guiding Dawn Pedersen.

Is it just advertising revenue? The advertisements that popped up when I visited Dawn’s Brain included OceanSpray, Fairmont Hotels, Walks of New York, WayFair.com, intuit QuickBooks, Lexus, University of Phoenix, Hedwig and the Angry Inch on Broadway, and RoyalCarribean International. That’s an impressive list. Dawn Pedersen must be able to show plenty of hits to Dawn’s Brain for ad revenue like that. (And here I come with my little post, stirring even more traffic. Sigh.) Dawn Pedersen, “science advocate,” also has other sites like Kids Busy Book and Draw to Learn, which she promotes on Dawn’s Brain. So she has the motivation to draw visitors to those sites, too.

It’s apparent, at least, that Dawn Pedersen gets a lot of web traffic by promoting the mainstream. By insulting those who peek beneath the surface. She has her sights set on easy targets, like parents trying to recover their children or fighting for healthier foods. Because why? Views are mainstream when most people accept them. People like to hear their views confirmed. People reassure themselves by insulting those disagree with them. People enjoy reading blogs that promote their own opinions. (If you stick with Finding My Kid, it’s a fair bet you think autism recovery is a good idea.) There is much to be gained through dismissing alternative ideas, and I wager Dawn Pedersen is happy to be profiting by doing so.

Always Figure in the Profit Motivation

Don’t get me wrong. I’m no Pollyanna. Dawn Pedersen not the only one profiting off, in this instance, autism. Autism recovery, while achievable in many cases, is so complicated to navigate, and autism can be so devastating for families, that desperation is running rampant. Desperation invites charlatans. One walk through the sponsor corridor of an autism-recovery conference shows as much. Remember what I posted about AutismOne? The guy with magic salts and vibrating machines? He’s not the only one. Vendors hawk antioxidant sweeteners, nutritional shakes, bracelets and amulets to block electromagnetic fields, CD’s of brain-calming sounds, pressure-point stimulators, you name it. Conference sponsors pay for their spot on the floor, and they want to recoup that investment. Parents who’ve found nothing that helps will buy anything.

It is easy to see why some families choose to write off the field of autism recovery altogether.

Beyond the snake-oil salesmen are practitioners making money off what actually works. Take hyperbaric oxygen therapy (HbOT), for example. I believe (despite lack of mainstream confirmation) that it can improve cognition and neural function in children with autism. But it is very expensive, and the gains sometimes don’t seem to stick after the child stops using the HbOT chamber. Thus, although HbOT “works,” it may not justify the tremendous expense (up to $10,000 for a series of 40 dives). Likewise are the controversial ionic footbaths, said to help detoxify the body. They really do seem to help, a little. But they can cost thousands of dollars, and similar results might be achievable through clay or Epsom-salt-and-baking-soda baths. Rest assured, we have no shortage of entrepreneurs ready to sell you an expensive footbath or HbOT therapy. Autism families will pay dearly for any help: vitamin B12 shots, signaling devises to find children who bolt, special combinations of vitamin supplements.

How can you ever be sure? You can’t. Here I will wade into controversy (ha! as if I usually don’t): I never trusted the late Dr. Jeff Bradstreet. He is such a big name in the autism-recovery movement, and many parents insist that Dr. Bradstreet was everything to their children’s healing. Still, Dr. Bradstreet rubbed me the wrong way. At an AutismOne talk this spring, he said that parents “owe it to their kids” to try MRT for at least a week, because it’s “not much money”—only $1,000 in MRT fees, several hundred dollars for a consult with him, travel expenses to Atlanta, and a week’s worth of hotel lodging and eating out, all for a treatment that, by his own (optimistic, it seems to me) prediction, might help 50% of kids. He said “not much money” to a roomful of autism caregivers, many of whom had probably blown their families’ vacation budgets for the year on getting to the AutismOne conference. I wanted to raise my hand and say, “Thank you for your work and research, Dr. Bradstreet, but please don’t advise these parents to give you their last dime on a wing and a prayer, and don’t tell them they ‘owe’ that to their kids.”

I am, however, and of course, grieving that Dr. Bradsteet is among the many alternative health practitioners (many rumored to be proponents of GcMAF) who’ve recently gone missing or died under questionable circumstances. I haven’t looked into this issue much. I’m suspicious about Dr. Bradstreet committing suicide. I mean, who wades into a river to shoot himself in the chest?

For me, any high-profile doctor presents a dilemma. On the one hand, I don’t want to penalize anyone for his/her success. If a doctor is helping children recover and earning plenty, good for him/her. On the other hand, becoming high-profile often requires more self-promotion than attention to individual patients, and sometimes involves selling miracles, like Dr. Bradstreet with his Bravo yogurt or Dr. Zach Bush with his Restore supplement. For me, for my own peace of mind, I prefer lesser-known doctors and practitioners to treat Martin. Otherwise it’s too easy to get lost in hype and lose perspective when it comes to evaluating results. As a biomed parent, I already feel like I have to take a stand against the mainstream world every day. If every other biomed parent says Dr. X or Dr. Y is the super-best, and I end up in disagreement, do I trust myself enough to stand against the biomed world, too?

I Say: Let Everyone Speak, and Prod Them to Reveal Their True Motivations

My husband’s employer has a generous foundation that matches charitable donations. The foundation recently announced a new policy: It will no longer match contributions to organizations that oppose marriage equality or full rights for LGBTQ persons. I, personally, would not donate to any organization that opposes marriage equality or full rights for LGBTQ persons. I, personally, support marriage equality and full rights for LGBTQ persons. Let’s face it—I’ve got bigger concerns in life than your gender or whom you love. Nevertheless, I can’t say that I approve of the foundation’s new policy. The policy quashes debate. It says, “This issue is so settled that we won’t listen to the other side.” When it comes to LGBTQ rights, I think the issue should be settled. I think. Others disagree. I wouldn’t silence their voices.

Decades ago, when I was deciding where to attend law school, I visited Yale Law School and asked about its Career Options Assistance Program. COAP repays the student loans of graduates who choose lower-paying jobs; the law school is expensive and doesn’t offer scholarships, so unless they get some help, its graduates are likely to funnel into big law firms or other high-paying jobs. At the time of my visit, I was smarting from being told, by another school, that I didn’t qualify for a public-interest scholarship because I wanted to work in animal protection, and animal protection isn’t “public interest.” At the Yale roundtable, I asked a dean whether availability of COAP funds depended on the type of work a graduate performed, as opposed to just the amount of money s/he earned.

“No,” the dean answered. “COAP is based strictly on income. We have no interest in dictating which fields our graduates enter.”

That’s the way it should be. We should encourage advocates to get out there and fight for their viewpoint, regardless of whether we agree. There is no value in not bothering even to engage minority positions. There is no value in browbeating others into silence. There is no value in hiding who is (or what funds are) really behind that browbeating. I shouldn’t have to wonder what motivates Dawn Pedersen to decry autism recovery, whether she is just driving traffic to her site, or whether some sponsor is buying her keystrokes.

I have no issue with money used to promote a viewpoint, especially when the source of the funds is acknowledged. I take issue with money used to pretend there is no counter-viewpoint, especially when the source of the funds is not acknowledged.

Does Progress End?

I launched this overblown post by stating, “I think that, ultimately, the self-interest that capitalism motivates moves everyone forward.” In the alternative universe of autism recovery, I find myself rethinking whether we’re still moving forward. We made it to a pretty good place here in these United States. The standard of living is high, chronic hunger affects few (though still too many), the stores are stocked, most everyone can read. We have labor laws to protect our children and zoning to neaten our urban spaces. We have choices.

But we’re chronically sick. Our marketplace demands cheap food, so we skimp on production. Our fertilization methods deplete the soil biome. As a result, the crops are less nutrient-varied. Then we compound the problem by processing the food. We meet the demand for over-consumption of meat by abusing animals on an industrial scale, in ways even our bear-baiting ancestors couldn’t have envisioned. Intensive confinement of animals requires such reliance on antibiotics that many are losing their value.

Even by official statistics, rates of asthma and allergies are increasing. That’s on top of the skyrocketing rates of autism, ADD, ADHD, and other childhood health problems that result in behavioral challenges. We’re raising the first American generation expected die younger than their parents do.

Dawn Pedersen, “science advocate,” might believe, or might profit from asserting, that we’re headed the right direction. As for me, the direction that we are heading is enough to make this capitalist wonder if she’d prefer to move off the grid.

No sponsors were involved in the creation of this post. None of my many degrees includes the art of self-promotion to advertisers. Of course, if you’d like to send me a check, whoever you are, I’ll take it! Party on, autism warriors.