Of Snot and Spots

Posted on August 4, 2015 by findingmykid

Overcoming autism is like trying to escape an octopus’s clutch: Just when you feel free from one tentacle, another swoops in to take hold.

Martin had a terrific spring, and his digestion and health seem better than ever. Yeast has been under control for a year. Bowel movements are formed and firm. He sleeps. His height and weight are right where they’re supposed to be. His once-distended belly lies flat. We’ve wrested him from several tentacles.

Enter—allergies. At least, I think “allergies.”

Until recently, Martin has never had overt trouble with allergies. The first sign of a change was a few months ago, at a diner. (Martin ordered an Angus beef patty, no bun, and steamed broccoli. The catsup he ate was not organic. It was full of crap.) Midway through the meal, Martin started sneezing and rubbing his eyes. His face became red, his nose ran, his eyes puffed and watered. I had no idea what was going on. I did my best to dab at his eyes with a damp napkin and make him comfortable. The reaction faded as we drove home, 20 minutes later.

A couple months passed without another incident. Then, in July, he had three such reactions in one week: two when he got home after school (Martin attends summer school), and one over breakfast. I don’t know if something in our house might be bothering him, something that coincidentally was also at the diner. I did notice that, with all three reactions at home, he was drinking camel milk when the trouble started. Accordingly, I’ve suspended camel milk until we figure this out. No more reactions of that type—runny nose, puffy eyes—have occurred.

Meanwhile, however, red spots have appeared on Martin’s left temple. They showed up two or three weeks ago, faded, and reappeared more prominently this weekend. And they’re breeding: When the spots emerged a few weeks ago, they were four. This past weekend, they were seven on his face and one on the back of his neck. The spots are neither raised nor itchy. They are not bug bites.

Terrible photography. Sorry. He didn’t want to be still.

So what the hell are they? Allergies? To what? Are they the result of a Heilkunst clear? Our last clear was PCV7. The skin is the body’s largest drainage organ. Or are the spots from clearing something else? We’re working on Martin’s biofilm now, plus the possibility (awaiting test results) of chronic Lyme, both of which involve antimicrobial drops. Is his body responding with spotty face?

Also happening nowadays: Martin’s ears hurt, and he’s coughing at night. His emotional regulation is terrible. He seems out of it. Where do those facts fit in the puzzle?

I’ve scheduled new allergy testing with Martin’s pediatrician, and I’m corresponding with our other practitioners, trying to figure this out, which leads to the biggest mystery of all: When exactly did I become qualified to make sense of such things?

I’ve never wanted to fight an octopus.

Falling Near

Posted on August 1, 2015 by findingmykid

Parents enjoy identifying ways their children are like them, right? That’s why we have expressions such as “the apple doesn’t fall far from the tree” and “chip off the old block.” When I was growing up, I knew a boy so like his father that everyone just called him “Chip.” I don’t even remember his given name. Daniel, I think.

When your child happens to have autism, the process gets reversed. You start looking for ways in which you are like the child. Autism has a genetic component and, like other immune disorders, tends to run in families. Hey, I find myself thinking, do I have autism? Maybe just a little? Is there a reason I’ve always liked to be by myself, a reason I was an awkward child? (Okay, fine. I’m still awkward.) Does everyone trace patterns on wallpaper? Does everyone count the number of steps she takes on each sidewalk square or section of parking lot? Does everyone need to locate all three cats before she can start the washing machine, just in case the 14 times she checked to make sure no cat was in the washing machine were inadequate? Does everyone inspect her front bumper upon arrival home to confirm she didn’t run anyone over, even though she surely would have noticed if she’d run someone over? Or is that only me?

I see so much of myself in Martin’s behaviors, the same behaviors we blame on autism.

Martin dawdles. I dawdle. I seem incapable of moving efficiently from task to task, or focusing on one task. As a corollary, I run late. Virtually always. When I absolutely need to be on time (say, to a deposition or hearing), I comically overshoot the mark and end up half an hour early, hanging out in a random hallway.

Martin remembers numbers and dates precisely, but his episodic and short-term memory are subpar, along with his desire to pay attention. He knows every train station between our home and Midtown Manhattan, the number of moons Jupiter has versus Saturn, the order of his classmates by height, and exactly what we did on November 17. Yet he has no inkling where he left his socks, or what I said we are having for dinner.

Martin has favorite times on the digital clock. They are 1:11, 2:22, 3:33, 4:44, and so forth. If he happens to see one of these times, he makes a special sound, a delighted “haaaw!”

I recall a conversation once, when I was eight or nine, about the length of movies. I said that Superman (referring to the original 1978 version with Christopher Reeve) was two hours and 22 minutes long. My mother became chastised me, saying I was making that up and could not know the length of Superman off the top of my head. But I did. As part of our subscription to HBO, my family received a booklet each month with the program line-up and a description of each movie. A year or two earlier, Superman was a full-page write-up in the booklet, followed by “(2:22).” The same number, three times. I wouldn’t forget such a thing.

Martin has informed me that, on the digital clock, 4 has four lines, 5 has five lines, and 6 has six lines. I already knew all that. I knew that because I count line segments on the digital clock, have for as long as I remember. 1:11 has the fewest total segments, six. 10:08 has the most, 21. Digital 6 minus one line makes 5. Digital 6 plus one line makes 8. Digital 6 with one line moved makes 0 or 9.

In November 2014 Martin informed me that first Saturday and final Sunday stood alone. He told me this from his bathtub, and although no calendar was nearby, I didn’t need to ask him what he meant. On the paper calendar, November 1 (a Saturday) and November 30 (a Sunday) were each the only date in their respective rows. In February 2015 Martin told me one week was empty. Again, no explanation needed: The last calendar row contained no dates.

I get frustrated with Martin when he doesn’t pay attention. That’s so unfair of me. When I was in first grade, I took dance class. I never knew any of the steps, because I didn’t pay attention to learn them. I didn’t pay attention in baton, either. I faked the moves and occasionally got caught. Once, at an assembly for baton, a special drawing was held, with much fanfare. I was present but didn’t listen at all. When my name was picked for a prize, I had no idea what I’d won, or what to do. Until someone poked me, I didn’t even realize my name had been called. Did I have autism? Do I now? Maybe just a little?

Should I be treating myself with diet and supplements?

Will I be satisfied if Martin grows up to be like I am now? Or do I want him to be better?

Maybe just a little?

The prize I won, all those years ago, was a fancy new baton, which I was supposed to report to a table to retrieve. I carried it proudly but still never learned the moves.

And you probably will have guessed this already: I just went on imdb.com to check what that website says about the length of the 1978 version of Superman. According to IMDB, the movie was 2:23 long. Wikipedia says the same thing. Ha. That’s what they say. The HBO guide listed Superman at “(2:22).” I can’t find that guide on-line, but I still can see the numbers in my head.

Remember these things? I searched on-line but couldn’t find an image of the one featuring Superman. Any collectors out there?

Fledgling Attempts

Posted on July 30, 2015 by findingmykid

Berkeley, California, last month. We have a couple hours free, so I bring Martin to Codornices Park to play. After a few trips down the 40-foot concrete slide, which he abandons when a rowdy group of unsupervised boys arrives, Martin wanders to the swings. I’m sitting on a nearby bench, kind of zoning out in the pleasant Pacific breeze. When I look up, Martin is talking to a boy on the swing next to him. I hear Martin say he’ll be seven in three days and ask the other boy’s age. The boy says he is already seven and asks Martin where he lives. Martin looks for me, waves, and yells, “Mommy, I’m making this boy my friend!”, and then tells the boy that he’s from New York. The boy asks what Martin is doing in California.

Martin replies, “We are going to visit my mommy’s client. She has one daughter and two sons.”

We are indeed going to visit one of my legal clients. The woman, however, has only one child, a daughter. Martin added the part about two sons because he thinks it is funny to lie.

The boy on the next swing starts to ask another question. Martin interrupts and says, “No, she doesn’t have any sons!”, and then starts laughing.

The other boys asks, “Why did you say she had two sons?”

Martin continues laughing, and doesn’t answer. The other boy gets off his swing and walks away, watching Martin over his shoulder as he goes.

Laguna Beach, California, last month. My brother Rudy is working, so Martin and I have time to kill. I take him to the main beach playground. Two other boys are there. I would guess them to be about six and eight years old—chronologically speaking, one on either side of Martin—and they appear to be brothers. They are supervised by an older woman, maybe their grandmother. I hear the brothers speaking English to each other; the grandmother calls to them in a Slavic-sounding language.

The younger brother begins to follow Martin, trying to engage him. At first, Martin pays him no mind and goes about climbing alone. The boy is persistent. He wants to play with Martin. He even ignores his older brother, who keeps tagging him and running away while yelling, “There’s no way you can catch me!”

Eventually Martin accepts the younger brother’s overtures, and they start playing together. At least, they’re engaging in the same activities: trying to climb over each other on the rope bridge, balancing on the logs. I don’t hear them speaking. The older brother continues trying to get the younger brother to chase him instead, to no avail. The younger brother is hooked on Martin.

Martin waves to me and yells, “Mommy, I’m making this boy my friend!”

I half-ignore the inappropriate declaration and whip out my iPhone to snap a picture, which I text to Adrian with the caption, “We are at a playground, and I think Martin has made a friend!!!”

The iPhone rings. It’s Adrian. “Tell me more,” he demands. I tell him that Martin is engaging in cooperative play with another boy. I promise more pictures as available.

When I get off the phone, I see that the older brother has given up trying to steal the younger brother from Martin, and all three boys are together in the playground’s covered structure. Better yet, I hear them talking. Names are exchanged. The older brother says something I don’t catch. Because Martin still lacks voice modulation, I hear his answer clearly: “My dad comes from South America!” That’s true. I hope it’s relevant. I hope Martin has asked what language the boys’ grandmother is speaking, and that one of the boys has told him that their mom or dad comes from somewhere, and that Martin has responded by saying where Adrian comes from. I hope.

The grandmother calls the brothers, and they leave without saying goodbye. If Martin is disappointed, he doesn’t show it. He returns to playing alone.

The last time we visited Laguna Beach’s main beach playground, two years ago, Martin ignored everyone and had a potty accident. Progress!

Laguna Beach again, two days later (the intervening day having been the Disney trip). I take Martin to a newer playground, at Aliso Beach. We’ve never been to this one before. It starts weird: Martin removes his shoes and runs onto the sizzling sand, which burns his feet. Instead of running off the sand, climbing on something, or dancing, Martin stays put and screams for me while his feet continue to roast. I get some Crocs on him, and the weirdness passes.

Two little girls show up together. Martin tries to engage them. He says hello and follows their lead, climbing where they climb. The girls acknowledge Martin but don’t return his interest. They continue playing together. Martin hovers nearby, plainly looking to be included.

More kids show up, until seven or eight total are playing. The bigger kids, the ones around Martin’s size, start running as a pack, chasing each other, kicking a ball, shouting instructions and comments. Martin gets left behind. He goes instead to a swing. Although he is capable of pumping his legs to propel himself, as high as he wants, he calls me to come push him.

When Martin is rejected, Mommy is his safe place.

Slide at Codornices Park. Martin is the top kid on the stairs, carrying cardboard in his left hand.

Poor photo quality, because I had to zoom in from afar. Main beach park, Laguna Beach. Martin is on the right. His new friend is behind him.

Wait—That’s Bad?

Posted on July 25, 2015 by findingmykid

In the post about Martin’s disastrous Disney morning, I also mentioned buying him a black coffee, hoping it would help.

In my effort to present an honest picture on this blog, I keep my readers abreast of my application for Autism Parent of the Year. Remember when I started my kid on glasses and Heilkunst the same day, then couldn’t figure out which made him puke? Or when I denied him the chance to connect with a boy at church? How about when I vacationed in Jerusalem while Martin pined and threw tantrums at home? Way to go, me!

Let’s add coffee to the list. Months ago, Martin asked to sample an iced coffee I was drinking. I drink my coffee black: There wasn’t any soy milk or commercial almond milk or carrageenan or whatnot to worry about, so I let Martin try a sip. I thought he would hate the taste. Instead, a practice began, wherein Martin drank my coffee. More and more coffee each time, until finally I was buying him his own black iced coffees and giving him hot coffee at home.

My reasoning? Brewed coffee is GAPS-legal, and the stimulant effect seemed to do Martin well. He seemed more focused. No harm done, right?

Not so much, is MAPS doctor informed me when I mentioned the coffee habit (and convinced her to believe me). A stimulant isn’t really so good for Martin, and I should stop with the coffee, ASAP.

Which was my honest intention, until things ran amuck at Disney. Coffee! I told my brother Rudy. Grab some coffee! It helps!

Except when it doesn’t.

Want to Know What Terrifies Biomed Parents?

Posted on July 20, 2015 by findingmykid

In my last post, about Martin’s disastrous Disney morning, I mentioned a nasty insect bite on Martin’s foot that’s had me worried.

I suppose many parents worry about insect bites. They’re itchy. They can become infected. Some folks have allergies; I myself react so badly to mosquito bites that I have to rely on antihistamines. There is West Nile Virus to worry about and, elsewhere, malaria.

For many of us in the autism-recovery community, I think, bites provoke a special, heightened fear: Lyme disease.

Lyme disease, which is transmitted by ticks, primarily deer ticks, has become endemic in many parts of the United States. Lyme disease is also implicated in the issues that many children on the spectrum have. Worst of all, because Lyme disease is so hard to diagnose, and can mimic other problems, it is difficult to get proper treatment.

In November 2012, a test showed Martin slightly positive to Lyme and one of its common co-infections, bartonella. We treated him with a course of takuna and other antimicrobials, and later tests showed no indicators for Lyme. But who knows? I dread/fear another infection, or one already present and unable to be diagnosed. When Martin plays outside, I spray him with a combination of essential oil in witch hazel or apple cider vinegar. I’m not going to use the chemical repellants, and I need something to keep the bugs away.

When Lyme disease is transmitted, a tick bite often will form a “bull’s eye” rash, a spot surrounded by a red circle. Can you imagine how I freaked out when Martin’s babysitter, Samara, sent me this picture of Martin’s foot, accompanied by a note that the bite seemed to be bothering him?

In retrospect, “freaked out” might be an understatement. I exited a business meeting to research Lyme onset and how long the rash should last. I posted the picture to an ASD group on-line, seeking advice. Within ten minutes or so, Samara sent another picture indicating that the bull’s-eye-like rash had faded already into a more traditional insect bite.

That seemed to be good news; from my quick research, a true bull’s eye would last longer. Also, Samara reported that the bite was now itchy; according to the moms who weighed in on-line (sometimes trustworthy, sometimes not), a bull’s eye usually doesn’t itch.

These developments calmed me enough to stay at work and not demand that Samara bring Martin to meet me at the pediatrician’s office. I did email the photos to Martin’s MAPS doctor, who recommended additional anti-microbial drops as a preventative measure, and told me to visit the pediatrician or emergency facility, for antibiotics, if we noticed any other symptoms. We didn’t, thank goodness. We stayed on the extra anti-microbial drops, in case.

When the Disney morning from hell rolled around, my mind returned to the bull’s-eye-cum-mosquito-nibble. Sometimes ASD recovery feels like a continual series of freak-out moments.

Or maybe that’s just what parenting feels like.

Passing Storm

Posted on July 9, 2015 by findingmykid

Last Wednesday, my brother Rudy and I took Martin to Disney in Anaheim. Rudy and I talked the day up: the characters we would see, the rides we would ride. Because one of Martin’s current interests is marching bands, and Martin always has enjoyed live music, Rudy mentioned that we might see a marching band too.

When Martin woke on Wednesday morning, at my brother’s home in Laguna Beach, he seemed—okay. Not great. Not particularly enthusiastic about the daytrip to Disney. Just okay. I fed him Treeline cashew cheese on flax-seed crackers for breakfast, and then we stopped for second breakfast at the Penguin Cafe, where Martin ordered a hamburger patty, fruit, and “bubbly water.” He ate slowly and seemed distracted. His voice modulation was subpar. “Indoor voice, bunny rabbit!” I reminded as he shouted his order at the waitress. “Use your indoor voice!”

The real trouble started in the parking lot when we got to Anaheim. “I don’t want to go to Disney,” Martin said when we exited the car. “I just want to go back to Uncle Rudy’s.” I wasn’t sure how seriously to take his words; Martin often reverses what he wants to do and doesn’t want to do, and his hesitations can be fleeting. I persuaded him to get on the shuttle from the parking lot to the park. On the shuttle Rudy engaged some kids who presented themselves as experienced Disneygoers and gave advice on rides and performances. Martin sat silently. He opened his mouth only to answer, with additional prompting, when someone asked him how old he was.

On the plaza outside the park, Rudy picked up a schedule of events and, trying to rouse excitement, told Martin that he would be able see a marching band (parade) at 4:30. Martin completely freaked. He did not want to see a marching band. He did not want to go to a park with a marching band. I took him to the restroom, had him sit on the plaza with Rudy, and finally negotiated an agreement that we would enter California Adventure, Disneyland Park’s companion. We would not see a marching band, I said. We would not enter Disneyland.

We made it inside California Adventure. I headed straight to the “Chamber of Commerce” to request a special-needs speed pass. The agent who helped us with the pass also put us on a list for the Monsters, Inc. ride ten minutes later. We didn’t make it, because Martin panicked at the idea of attending any attraction. He was full of anxiety. He walked aimlessly, crying and not crying and crying again. He couldn’t stop asking about the marching band, whether we would hear the band, whether we would go to the other Disney park. He fixated on 4:30, the time when Rudy had said the marching band would play (in the other theme park). He didn’t want this. He didn’t want that.

“Hey, I’m happy just to be here, walking around with you guys,” said Rudy, who had taken the day off work to accompany us. “Let’s go with it. Maybe he’ll find something he wants to do.”

Alas, Martin didn’t find anything he wanted to do, at least not then. I bought him a black coffee, hoping that might help. Nope. I bought him a box of organic apple juice as a treat, hoping that might help. Nope. Martin couldn’t bear to be still, couldn’t be held. He moved, whined, and panicked. As the situation became ever more challenging—“Mommy, will we see the marching band? Mommy, what time is it? Mommy, I don’t want to go to the Disney park. Mommy, can we hear the marching band? Mommy, is it 4:30?”—I considered throwing in the towel. I wondered if I should return to the “Chamber of Commerce,” explain that my usually stable son was having anxiety meltdowns that precluded our enjoyment of the park, and ask to return and use our $300 tickets the next day. Finally, when I ran out of ideas, Rudy saw openings at a nice in-park restaurant, asked about special-diet options, and guided us inside.

Martin managed to listen to the food options and order, interspersed with getting up to run around. Then he sat long enough to eat an entire order of boiled calamari, followed by a plate of gluten-free pasta with clams. (It was barely noon. Remember, he’d had two full breakfasts before we left Laguna Beach.) Rudy and I drank wine with our lunches. By then, alcohol was necessary.

By the end of lunch, Martin seemed a little better. He still was having trouble sitting still, but the crying eased. He went to the men’s room by himself. He didn’t get upset when I couldn’t find a dessert that he could eat.

After lunch he asked to enter one of the eight million stores. Thinking that something to clutch would ease the anxiety, I told him he could pick out a stuffed animal, and he chose an eight-inch Donald Duck. When we exited the store, Martin seemed calmer. He looked at a ride, a kiddie attraction with jellyfish that rise into the air. I asked if he’d like to go on the ride, and to my surprise, he agreed.

From then on, the situation turned. The anxiety didn’t disappear completely, but Martin asked about the marching band only every 10 or 20 minutes. The restlessness decreased. He tried half a dozen rides, including the Goofy’s Sky School roller coaster, despite his professed dislike of roller coasters. He asked to enter a courtyard and listen to a Raggae-style band. Rudy and I exchanged what-on-earth-is-happening? glances, and when Martin was out of earshot, verbalized those glances. In the end, we stayed at California Adventure until nearly 7:00 pm, and finished off the day waiting patiently in a long line, at Martin’s request, to meet Minnie Mouse. Once we were headed back to Laguna Beach, Martin skillfully introduced Donald Duck to his friend Chicago Bear, who had spent the afternoon guarding Rudy’s car.

We had one kind of morning, and a different kind of afternoon.

I’ve asked myself repeatedly what could have caused Martin to have such a disastrous morning. The full moon? Traveling? Lack of sleep because of jet lag? A nasty insect bite on his foot that’s had me worried? A healing reaction?

I suppose I will never know, which is unnerving. I’m glad it didn’t last.

When Martin, feeling better, said he doesn’t want to go back to Disney anymore, I decided to honor his wishes.

Who Gets to Join This Fancy Club?

Posted on July 7, 2015 by findingmykid

Last night I had the pleasure of dining with an old friend from law school. Our discussion turned to Rachel Dolezal, the woman who resigned as president of Spokane’s NAACP chapter after it became known that she was born white, not black. My old friend is now a law professor; her research includes issues of race. She talked about three ways of identifying with a community (in Dolezal’s case, identifying with the African-American community): documentary, like checking the box that says “Asian-Pacific Islander” or “Hispanic” on a form; biologically, like asserting, “My grandparents came from Ukraine, so I am Ukrainian”; and aesthetically, like adopting traditions, tastes, customs, &c. commonly associated with the group. My friend opined that a person who chooses to claim a social identity, even if s/he does so only aesthetically (say, in hairstyle, language patterns, and manner of dress), should not be rejected if s/he also assumes the burdens associated with that identity: If Dolezal claims blackness, and willingly endures the discrimination that black women in the United States face, then her lack of biological identification does not disqualify her from the African-American community.

My friend the professor owns that theory: Any flaws in articulating it are mine alone.

We also spoke about Martin. I am sometimes asked why Martin—remember, that’s not my son’s real name—has a Spanish name. He is pale and blonde like I am and doesn’t otherwise “look” Latino; moreover, although Adrian, my husband, comes from South America and speaks English with an accent, he does not participate in “Latino culture” as we have (or imagine) it in the United States. (Excuse my sweeping generalizations; a blog post admits only so much depth.) My friend noted that Martin already identifies with the Latino community biologically and documentarily (we check both the “white/Caucasian” and “Hispanic” boxes), and to some extent aesthetically, because he is Spanish-English bilingual and has a Spanish name. Someday, my friend observed, Martin will have to decide for himself how much more he will identify aesthetically with United States Latino culture.

I enjoyed this conversation so much. It was personal, thought-provoking, and invigorating. Even better still, we were discussing Martin, and his future, and the topic was entirely unrelated to autism. I don’t know whether my friend is aware that Martin has autism. Martin was there, present, at my friend’s apartment. As we talked, Martin was playing, awkwardly but more or less appropriately, with my friend’s four-year-old daughter. Adrian and I are not public about Martin’s diagnosis, and I’ve never had occasion to tell this friend. Maybe she knows via the friends-in-common grapevine. Maybe not. Autism isn’t really the elephant in the room when I have Martin with me, not anymore. These days it’s sort of the toy elephant in the room. I can shove it in a pocket or tuck it behind a knickknack and hope no one notices.

That being said, as I sat with my friend and (especially) thereafter, my mind drew connections to autism. Martin has autism. I am part of the autism community. My family is part of the autism community. In terms of biological identification, we did not choose membership. Martin developed autism. It happened. Our entry tickets appeared. In terms of documentary identification, I suppose we do choose to join, out of necessity. If we want special education and other services, we have to check that (sometimes metaphorical) “autism” box.

Yes, I also check the metaphorical box to pre-board airplanes. Guilty.

Which leaves aesthetic identification. As an aesthetic matter, do I identify as a member of the autism community? Yes and no. No, insofar as we are not public about Martin’s diagnosis, insofar as we share on a mostly need-to-know basis. Our primary motivation for keeping Martin’s autism private is that he is getting better, and that one day he will recover, and then we don’t want him seen as “the kid who had autism.” In that regard, we refuse to assume one burden of the autism identity: We try to insulate Martin from the negative stereotypes associated with spectrum disorders.

Yes, however, insofar as autism has worked infiltrated the way I navigate the world, and any insult to the autism community feels like an insult to me personally, and by derivation to Martin. Remember when an ignoramus in an elevator called my friend Natasha’s pre-verbal son a thing? The offense hit me exactly as if he had called my son a thing. Two weeks ago, in a Brooklyn market, a minister—a minister by profession and not, I daresay, by vocation—yelled at my friend Stacey’s sensory-seeking son and then told Stacey to “get [her] son under control before he hurt[] someone.” Though I heard the story only afterward, from Stacey, I felt myself there present, as if the alleged minister had yelled at Martin and said those awful words to me. I identify with every report of a spectrum kid getting bullied, family who can’t afford biomed, or student whose school district denies appropriate special-education services. Regardless of whether we speak out or advocate, I am part of the autism community psychically.

I wonder what will happen when, for the most part, we lose Martin’s biological identification with autism, when he recovers? (I say “for the most part” because I envision him always having some level of immune sensitivity that requires special care.) I remember the episode of Curb Your Enthusiasm, when Larry David’s Los Angeles character, who’s always believed himself the son of Jewish parents, discovers he’s adopted and was born to Protestants. Immediately he begins doing stereotypical things like wearing a fanny pack, hunting, slamming beers. When we lose Martin’s biological connection to autism, will my aesthetic identification fade too? Will I ask, “Is autism bullying a problem?” or, “They have adequate social services for persons on the spectrum, don’t they?”

I won’t. I think once a person has experienced what it means to reside with autism, that feeling never goes away. Maybe it’s comparable to PTSD; I once saw a report indicating that mothers of adolescents and adults with autism experience chronic stress similar to combat soldiers. Martin is young still, his autism has never been “severe,” and shortly after we started biomed, he started sleeping regularly (other than stress, lack of sleep was the big threat to my own health), so maybe in my case the PTSD comparison is too dramatic.

Does Rachel Dolezel have a place in the black community? Not for me to say, because it’s not my community.

My old friend from law school has me thinking this: I’m really not interested in policing the membership of the autism community, either. If a person who is biologically and documentarily unconnected to autism wants to assume the burdens of autism, wants to internalize every insult the way I do now, then I welcome that person on board. We biomed parents are striving to reduce the biological autism community. Growing the aesthetic autism community can only help those who remain biologically connected to autism to fare better in this world.

Those Doubts Are Gone. From a Mainstream Perspective, I Get Crazier by the Day

Posted on June 26, 2015 by findingmykid

Remember my doubts about Heilkunst homeopathy?

Heilkunst is about supporting the body’s natural healing power, allowing its own return to health. I had to go through the dreadful process of enumerating, in reverse chronological order, the many insults to Martin’s immune system, from medications and illnesses to vaccines to home remodeling while I was pregnant. For eight months we’ve done a “clear” every two or three weeks, working backward through what might be hampering Martin’s recovery.

Immediately after we began the first clear, which addressed coxsackie, Martin vomited and woke the next morning with a mild coxsackie-like rash on his hands. Since then we’ve seen what appear to be “healing reactions” of all sorts. Itchy neck. Inner-ear swelling. Tired allergy eyes. More vomiting. ROOS. Ugh, ROOS.

At the same time, Martin has been getting better and better. Seriously, he’s having a homerun 2015. I’ve been “reasonably convinced” the Heilkunst is doing what it’s supposed to.

Time to scratch the “reasonably.”

Our last three clears have been MMR, the H1N1 vaccine, and antibiotics we used when addressing SIBO. The antibiotics actually should have been addressed much earlier, in terms of chronological order; I realized only recently, from reading comments in an on-line group, that antibiotics need to be cleared.

I had a hunch that H1N1 clear would be a tough one. The H1N1 vaccine—why on earth did I fall prey to the unnecessary frenzy over that illness?—was the only injection from which I saw a noticeable difference in Martin, beyond the fever-crying-and-blues we are supposed to accept in a recently vaccinated child. He received the H1N1 shot in November 2009, when he was almost 17 months old. (According to his medical records, a “second” H1N1 shot was administered in January 2010. I have no recollection of that.) The shot was not a bad one, in terms of Martin crying or acting out. Instead, he became very quiet and withdrawn, and then, the same afternoon, I noticed him engaging in repetitive behaviors: moving toddler chairs into formation, stacking them, moving them. It was the first time I’d ever noticed such behaviors. Do I know that the onset of repetitive behaviors was tied to the H1N1 vaccine, instead of coincidental? No. But the timing raises red flags. Plants a whole row of red flags.

So I went into Martin’s Heilkunst H1N1 clear with trepidation. The clear involves three wafers given over three days, and then a two-or-three-week waiting period while Martin’s system works through the effects of the H1N1 shot.

As to what happened, here is the update I sent to Martin’s Heilkunst practitioner following the H1N1 and MMR clears:

With the H1N1, Martin was crabby for more than a week. He also had trouble sleeping and reverted to some behaviors we haven’t seen in a long time, such as uncontrollable perseveration and also verbal stimming (he says “goo-HEN-duh-may” repeatedly, and tries to get others to say it also, by asking, “What did I just say?” or, “Is ‘goo-HEN-duh-may’ a word?”). One afternoon he was super crabby and tired, and at dinner he said abruptly, “Mommy, I need to throw up.” (I feel bad: I didn’t believe him, because he frequently says that when he just doesn’t want to eat, doesn’t want to go to school, &c.) Then he vomited, twice, all over the dinner table and floor. After I got him cleaned up in a bath, he seemed to be feeling much, much better. He asked if he could have dessert even though he didn’t finish dinner, and then he went to bed and slept more peacefully. No trouble after that.

I waited another week and then did the MMR. Martin did not get as crabby, but one night after I bathed him, I noticed a bright red, raised rash on one half of his backside. By morning the rash was gone. Also, one day later he was covering his ears and saying they hurt. I put some Hyland’s earache drops in them, which seemed to help.

Overall, Martin is doing very well right now, with a big increase in conversation skills and some in attention. Socialization remains tough.

I should add that the rash I saw on Martin while we were clearing MMR was a mild measles-like rash. I know, because I had measles when I was 12. (I lived in a semi-rural area where, as far as I know, vaccination rates were near 100%. I caught measles despite being initially vaccinated, and later hit with a booster shot. I’m resisting the urge to make this post about vaccines.) In regard to looking like measles, Martin’s rash was clear and distinct.

Let’s agree on this: I don’t have my doubts about Heilkunst anymore. These wafers are doing something.

Let’s follow up with this: I don’t know how Heilkunst is working, or exactly what these wafers are up to. I know that the principle is “energy medicine.” Each wafer delivers a minimized, harmless form of what insulted the immune system, to help the body recognize and expel the toxin. But how does the wafer acquire that energy? At AutismOne, out of lingering curiosity, I crashed the Homeopathy Center of Houston panel discussion and asked questions. We don’t use the Homeopathy Center of Houston, buy hey, same idea as Heilkunst, right? Or close? The lovely ladies of Houston explained about dilution and formulas and administration and many other procedures, and my little brain left the room as uncertain as ever. I may be violating my own policy of comprehending any treatment before we begin; in the case of homeopathy, I consulted as many parents as I could find and also searched online for reports of negative or adverse reactions to sequential homeopathy. Having found nothing substantial or substantiated, I proceeded.

My online searches did yield studies (and straight-up arguments) concluding that homeopathy in general is bunk, just so much ineffective snake oil peddled at high prices. I took those accusations under advisement.

And now I feel comfortable saying: They’re wrong.

Closer?

Posted on June 16, 2015 by findingmykid

Time for another dispatch about church. I write a lot of dispatches about church, because (1) we’re there once a week (or so), giving me a convenient, less-than-daily forum to mark progress; (2) I see Martin with other children, and with adults; and (3) Martin always seems to be engaging in adorable antics at church.

The scene: Pastor has called the children to the chancel for their sermonette before they head to Sunday school. The dialogue: I wasn’t recording, so I’m going to do my faithful best to recreate:

Pastor: “Good morning, children.”

Children: “Good morning, Pastor!”

I distinctly hear Martin’s voice amidst the half dozen children. He calls out clearly, “Good morning, Pastor!”

Pastor: “Today’s lesson was about a mustard seed, a tiny mustard seed. Do you know how some people always think bigger is better?”

Martin: “No, bigger isn’t better!”

The same clear voice, calling out. The entire church can hear him, I’m sure.

Pastor: “You don’t think so, Martin?”

Martin: “No, I don’t like bigger.”

Pastor: “I suppose when I was your age, I also liked smaller better.”

Martin: “I’m six years old, but I’m almost seven.”

Now he’s monopolizing children’s time, still clear as a bell.

Pastor: “When is your birthday?”

Martin: “It’s this month! It’s the last Tuesday of this month.”

Pastor: “So you’ll be getting bigger, like this mustard seed.”

Martin: “Um, look at my new shoes!”

Whoops. Nonsequitur. I suppose Martin wanted to keep the floor but didn’t know how to follow the mustard-seed thought. By now members of the congregation are tittering good-naturedly.

Pastor: “Where did you get those?”

Martin: “At the store.”

Pastor: “It must have been Stride-Rite. Your shoes say ‘Stride-Rite’ on them.”

Martin: “Yes, of course it was Stride-Rite!”

The congregation laughs. The pastor manages to squeeze in another sentence or two about the mustard seed, then dismisses the children to Sunday school. As their little procession passes down the aisle, Martin looks at me, waves, and calls out, “’Bye, Mommy! I’m going downstairs now,” to the ooohs and aahs of those around me.

After the service, as the pews are emptying and then during coffee hour, I am approached by four different parishioners, each calling Martin “adorable” or “cute.” Even better, one woman who knows Martin has autism comments on how much he’s coming out of his shell. Best of all, an older woman with whom I’ve never shared the diagnosis says, “Your son is so articulate!”

Wait. She doesn’t just say that Martin is articulate. She swoons.

Martin, articulate? My son? Glad I happen to be standing in church, because I’m doing a lot of praising God.

Last month at the AutismOne conference, I met this amazing Supermom from Minnesota, who is working to recover her not-yet-verbal 12-year-old son. At lunch one day with other moms, we started sharing pictures and videos of our kiddos. I called up out a particularly strong performance—a video Adrian and Martin taped from bed that morning, telling me what they planned to do with the day—and handed the Minnesota mom my iPhone.

She watched the video, handed back the phone, and said, “I don’t want to diminish the struggles I know you have, but if I watched that video without knowing more, I would think your son was typically developing.”

Right there, at Maria’s Mexican Restaurant behind the Loews Chicago O’Hare Hotel, I started to cry.

Whatever Gets You Through the Night

Posted on June 15, 2015 by findingmykid

I have coined a new syndrome: My Kid Is in Special Education But It’s Not the Same Way Your Kid Is in Special Education and Mine Isn’t Staying in Special Education So Why Bother Being Friends Syndrome, or MKISEBINSWYKISEAMISSESWBBF Syndrome. I know that’s a cumbersome, but I really think it could catch on.

I encountered MKISEBINSWYKISEAMISSESWBBF Syndrome four years ago, on Martin’s first day in a preschool for children with special needs. Half a dozen parents and caregivers were in the waiting area before school ended. Some seemed to know each other already. I saw a woman alone, as I was alone, so I introduced myself and said it was my son’s first day at the school.

The woman checked me out sideways, without facing me. She wore gigantic diamond-stud earrings, and honestly, her hair looked much better than mine. She was picking up her daughter, she said. Also first day here.

Did they live near the school? I asked. Was it a long trip like we had, coming from another borough?

The woman didn’t answer that question. Instead, maybe thinking that I wanted to follow up personally, instead of just make small-talk, she said that her daughter had spent the previous year in regular private preschool, and that really everything had been fine there and her daughter had no trouble socially or academically, and had many friends, and was now going to this school temporarily to help with some mild dyspraxia, and as she and her husband expected their daughter to return, by next year at the latest, to her regular private school, they were planning to keep her friends and social peers in that school, not this one.

Oh. Okay.

Yesterday, at Martin’s last day of gymnastics, MKISEBINSWYKISEAMISSESWBBF Syndrome struck again. Martin is one of the few kids who doesn’t participate in the JCC’s afterschool-busing program, because that program is offered only to the school district immediately surrounding the facility. He’s jealous of the kids who come directly from elementary school to the JCC by bus, with no mommies or daddies. This week he asked to bring his backpack to gymnastics class and put it with the other kids’ backpacks, I guess so he would look more like them.

“What district do you live in?” the assistant instructor asked when I explained why Martin had his backpack. We had arrived five minutes early, so we had time to chat. I told her our school district and that, right now, Martin has an out-of-district placement and attends a private school in another town. In another year or two, he might transition back to the district school, either to a self-contained special-education classroom or to a mainstream classroom with an aide.

“We’re in that district, too,” the assistant instructor replied. “Actually, my son, Andrew, is just changing schools. He went to first grade at D elementary school, but for next year they’ve just placed him into the self-contained second-grade class at G elementary school.”

This was quite a coincidence. Our district had been trying to convince us to place Martin next year into the self-contained second-grade class at G school—Adrian and I disagreed with the recommendation, thinking it is too early to pull Martin from his very successful current placement—but the district officials had abruptly stopped pushing us a couple weeks earlier, when the last spot in the G school class had been taken. Now I realized that the student who had filled that last spot was this assistant instructor’s son, Andrew.

I like the assistant instructor a lot, and she seems to have a good connection with Martin, knowing when to give him those bits of extra help that make possible his participation in a non-adapted class. I said, “Martin has friends in the self-contained class the year below him and the year ahead of him, and his mainstream friends attend S school and M school. I would love for him to know another student in the self-contained class for his year, so that he’ll have a friend if he moves into that class in third or fourth grade. Do you think Andrew would like to do a play date sometime?”

“Sure,” the assistant instructor said. “I mean, I guess. Actually, Andrew’s trouble is really just remembering what he’s been taught. Just an academic issue. He’s probably not going to be in the self-contained class for more than a year.”

Memory problems. Remembering what he’s been taught. Not like your kid. Not all that autism stuff.

I didn’t bother to get her number for a possible play date, and she didn’t ask for mine.

This post must sound like I’m judgmental toward those moms who suffer from MKISEBINSWYKISEAMISSESWBBF Syndrome. I’m not. Looking at the big picture, isn’t my approach to Martin’s autism a lot like MKISEBINSWYKISEAMISSESWBBF Syndrome? Even if I don’t say it to other parents, I’m constantly thinking, sure, Martin has autism now, but he won’t have it forever. Soon he’ll look more typical. Soon we won’t be in this spot.

And even if I couldn’t relate MKISEBINSWYKISEAMISSESWBBF Syndrome to my own actions, still I wouldn’t judge. As I recently wrote on a friend’s Facebook page, isn’t survival just the art of balancing what’s healthy against whatever gets you through the night? If another mom needs to think her kid isn’t the same kind of special-ed student as my kid, I’m willing to let that be her reality. Whatever gets her through this night.

Finding My Kid

A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

Tag Archives: autism