Tag Archives: recovery

Del Sur II: ¿Asperger’s?

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I read James Joyce for the first time when I was 17. It was A Portrait of the Artist as a Young Man, and it knocked my socks clean off. With the benefit of maturity, I’m pretty sure that most teenagers who read A Portrait of the Artist end up sockless, but 27 years ago, in high school, I felt singled out and special: James Joyce got me. He wrote the novel for himself and also for me. Stephen Dedalus was an alter ego for Joyce and me both. His stream of consciousness was also the wandering path of my own mind.

Martin speaks constantly nowadays. Constantly. It’s as if, those years when he lacked language to express himself, he built a bank of unsaid thoughts, and now the words gush, unfiltered. He alights the school bus yammering. Dinner is a series of, “Hang on, Martin. How about if the grown-ups get to talk for a minute?” He falls asleep holding court with his stuffed animals. Wednesday morning he materialized in our bedroom at 4:00 am and said something like, “I just woke up. My body woke me up. Maybe I’m not sleepy anymore? It’s still dark outside. Your clock says 3:54. Can I watch television? It’s Wednesday. I have school today. Why do you think I’m awake? Are you getting up now? My covers were tangled.” (I managed to convince him that his body woke him up because he needed to go to the bathroom. He went to the bathroom, I untangled his covers and tucked him back in, and blessed silence fell again.) I have become one with Stephen Dedalus. I’m living a stream-of-consciousness existence, and the consciousness is seven years old.

In South America, with few planned activities and much free time, I experienced just how very much Martin talks these days, and usually to me. He was a running soundtrack of our trip. “This morning I woke up at 7:37. Mommy, were you awake? Did you hear me get up? I looked at the clock, and it said 7:37. I wanted to get up at 7:00. I got up 37 minutes late. It was already light out. Tío was getting ready for work. I looked out the window and saw a balloon in the sky. Mommy, where were you? I found you in the kitchen. What time did you get up? What time did you eat breakfast? I played with my iPad while I was waiting for breakfast. Today my cousins are coming over. They are still in school. What should we do before they come over?” His cousins rang mute by comparison.

I am not complaining, not by any means. If you’ve had a child without functional language, if you once thought “I want you to do that again” was the linguistic apex of beauty and complexity, you understand: I, we, have fought for every sentence that Martin emits, and his chatter is our prize.

That’s what I remind myself when I’m hearing, for the 478th time, that there are three mommies and Martin needs to decide which is the real mommy. (Some episode of Mickey Mouse Clubhouse evidently had two Goofy characters, only one of which was real, or something like that, and Martin’s been running with the game for weeks.) He’s perseverating. The game is annoying. But the sentences are perfect, the syntax is solid, and every day he picks up new idioms.

So here is a question: Doesn’t this sound a lot like Martin has Asperger’s? Classic hallmarks of Asperger’s are a preference for the company of adults over children; long-winded discourse, regardless of whether anyone is listening; repeated return to one topic; speaking in a fast or “jerky” voice. Martin’s official diagnosis, now, is ADHD. The (mainstream) neurodevelopmental psychologist opined that Martin no longer meets the diagnostic criteria for autism. Asperger’s is a form of autism. What gives?

Good thing I’m not that into behaviorally based diagnoses. I followed Stephen Dedalus. I can follow this kid, wherever he’s taking us.

Del Sur, Interrumpido: Día de las Madres

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Sorry, so sorry! I have to interrupt my Del Sur vacation posts for a brief musing on Mother’s Day.

The children’s choir sang at our church Sunday, for Mother’s Day, and Martin sang with them. In addition, Martin was selected as one of three children to read a Bible verse, in front of the whole congregation. He was assigned 1 John 4:19: “We love because He first loved us.”

We began attending this church three years ago, after our family moved out of the City. Almost immediately, Martin began participating in the children’s activities, assisted by the unbelievable coincidence (or divine intervention?) of a Sunday school teacher who had recovered her own son from autism. For the first year, I was too nervous to let Martin participate alone, so I trailed him everywhere. I trailed him to the front of the church when the kids gathered around the pastor for children’s time, because he liked to wander to the organ and hit keys, or make himself at home in the choir’s box.

“Maria!” the pastor called one Sunday as I crept toward the chancel during children’s time, ready to check Martin, who was monopolizing the discussion. “Maria, please sit down. Martin is fine.” Of course, the congregation laughed. I was so embarrassed. After services, I asked whether I shouldn’t come quiet Martin when he talked too much. The pastor responded, “When you came here a year ago, Martin was too scared to open his mouth around me. If now he’s talking a little too much, I can handle that.”

I trailed him to Sunday school in the basement, because I didn’t want the volunteer leaders to feel burdened.

“No, you can’t come,” the Sunday school teacher told me one day. “Go back to your seat. I will send one of the older kids to get you if Martin has any trouble.” When I tried to sneak down and peek through the door, she caught me and shooed me back upstairs.

I trailed him to Tuesday afternoon kids’ club, or sent an assistant along, to make sure he could participate fully and the other children were kind. The kids’ club can be overwhelming; in fact, only this month have I allowed Martin to attend alone—which means Martin is now fully, independently participating in church.

Which brings us to this Sunday.

Adrian and I sat together, five or six rows from the front. Adrian doesn’t usually attend church, but Saturday evening at dinner, Martin had grabbed Adrian’s hand and asked so sweetly, “Daddy, will you not go to the gym tomorrow morning and come to the church to watch me instead?” During the opening hymns and readings, Martin sat with us, clutching the note card with 1 John 4:19.

When the children proceeded to the chancel to sing, Martin led the pack. Their first song, “Praise Him in the Morning,” involved hand gestures for morning, sun, serve, and so forth, and Martin more or less kept up. Then they sang the first verse of “The B-I-B-L-E,” stopping to allow the three children with Bible verses to read. Martin was third. He jumped and flapped his hands for just an instant while he waited, kind of a microburst of nervous excitement. When his turn came, with minimal prompting from a 10-year-old girl, Martin stepped to the microphone and said, “‘We love because He first loved us.’ First John, chapter four, verse 19.” He accentuated the –teen of 19 too much; other than that, the performance was stellar. Finally the children sang another verse of “The B-I-B-L-E” (all the verses are pretty much the same) and a concluding number before receiving their applause and scampering down the aisle to Sunday school.

Adrian recorded the whole performance on his iPhone. I watched from my seat, no concern that I would need to get to the chancel and assist or intervene. Even a year ago, I would have been on the edge of my seat with trepidation, ready to spring to action in case of disruption. This weekend, Adrian and I could have been any two parents proud of their kid.

During coffee hour, an older man I’ve smiled at but don’t recall ever speaking with approached me and said, “Your son did so well today. Even in the time I’ve known him, he’s grown so much.”

It’s going to take a lot to beat this Mother’s Day.

Del Sur I: This Completely Sucks—Wait! Did He Just…?

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Martin and I have spent last week visiting Adrian’s country of origin and my in-laws there. (Adrian did not join us. Evidently “family duty” falls entirely on me these days.) Back in January, I used each of four New Year activities as a heading for a “Martin right now” mini-essay. Now, a week in South America gives me five vignettes for pondering autism recovery. Without further ado:

Del Sur I: This Completely Sucks—Wait! Did He Just…?

I wasn’t sure we’d make it to South America. Our flight was set for Friday afternoon, first to Miami and then, overnight, farther south. The Sunday previous, Martin asked to leave a class play date early, asserting that he didn’t feel well. Adrian and I weren’t sure whether Martin was ill, or just overwhelmed by the crowd; in any event we took him home, where he felt well enough to ride his bicycle. Monday he went to school and to personal training, where the instructor reported that he seemed tired and “out of it.” He coughed a lot during the night but recovered Tuesday morning and went to school.

Lunchtime Tuesday, the school nurse called me. Martin had a fever. I brought him home, tucked him onto the sofa with his stuffed animals and Disney Junior channel, and kept him hydrated. The special-education teacher who cares for Martin Tuesday evenings opted not to come, because she is pregnant and didn’t want risk illness. I cuddled Martin. I didn’t want to leave him. But Adrian was out of town and I had tickets to the Rangers–Penguins game.

“…And then I called Samara, his nanny, and asked her to come watch my sick kid. I’m the worst parent in the world,” I told my cousin over our pre-hockey beers at Stout. 

“It’s the Stanley Cup playoffs. There are no bad parents,” he replied, sensibly.

Wednesday morning Samara stayed with Martin while I, hung-over and stung by the Rangers’ loss, headed to my office in Brooklyn. When Martin still had a fever Wednesday afternoon, I returned home and drove him to his pediatrician, who took a nasal swab and diagnosed influenza. I explained that we were supposed to board a plane 48 hours later. Give him Tamiflu, the pediatrician said. No, I responded, Tamiflu is too dangerous. Any other options? You can try Oscillococcinum, but it won’t work, she said. Can we fly to South America? You can fly to South America if the fever breaks by Friday morning.

That gave us 36 hours to eliminate the fever.

I started Martin immediately on Oscillococcinum, which probably I should have done at least a day earlier. Thursday he was still sick, alternating naps with playing, his temperature bobbing. Thursday night I was climbing into bed around 11:00 pm when Martin called, “Oh, no!” He had vomited in (more specifically, all over, and around) his bed. I scrubbed Martin and tucked him into my bed—Adrian was still out of town—, cleaned the mess, and was pleased when he subsequently slept through the night without incident.

Friday morning Martin woke without fever. He still wasn’t 100%. But he stated, adamantly, that he was prepared to get on the airplane and visit his abuelos y tíos y primos. Tentatively, I packed. Martin remained insistent, even as he fell asleep on the sofa. At lunchtime, I conjured a deal: We would go to BareBurger. If Martin felt well enough to eat a full meal, and hold it down, we would continue to JFK.

BareBurger has organic meat and gluten-free sweet potato fries cooked in non-GMO canola oil. Not perfect but, some days, a godsend.

Martin met my challenge, we boarded the flight to Miami, he slept eight hours on the overnight flight to South America, my mother-in-law retrieved us from the airport, and all this serves as backstory to Saturday, because Saturday sucked.

Last February, Martin did pretty well with his paternal cousins. He’s improved a lot since then, socially, so this year I expected instant interaction. I’m so foolish. Saturday, when three of his cousins arrived, including one close to his age, Martin responded by thrusting his face into my mother-in-law’s sofa and pointing his butt in the air toward the other kids. Okay. Haven’t seen that behavior in a while. I covered by saying something like, “Oh, Martin, have you decided to be shy?”

Next, Martin refused to speak to his cousins and directed all comments exclusively to me. I covered by claiming his Spanish was rusty.

Next, my father-in-law attempted to show Martin pictures of a recent family vacation. The cousins snuggled with their abuelo and admired the photographs. Martin stood behind them all and broke into a crying meltdown because he hadn’t gone on the vacation. I escorted Martin to his bedroom, calmed him, set him up for some solo time with his iPad, then returned to the living room and covered by claiming Martin’s fever had returned.

When I have a fever, I cry. Tears flow from my eyes, even if I feel well and am not upset about anything. That’s where I got the idea to say Martin had a fever that was making him cry.

By the afternoon meal, Martin had pulled himself together enough to join us at the table, but he ate in silence and refused to interact. I remarked continually on how unusual the withdrawal was, how really tired and still-kind-of-sick Martin must have been.

All the covering, of course, was designed not to let Martin’s cousins think he’s weird.

Toward evening Martin managed to join his cousins on the sofa. He didn’t talk to them, and they, engrossed in television, didn’t talk to him, either. My sister-in-law, mother of the cousins, deteriorated the situation further by commanding her 10-year-old son, “¡Habla con tu primo! Speak slowly! Stop watching television and speak to your cousin! More slowly! His Spanish is rusty!” The hapless 10-year-old said, “Um, ¿hola, Martín? Hooooooooooooooo-laaaaaaaaaaa, Maaaaaaaaaaaaartiiiiiin,” at which the other cousins laughed and Martin looked confused.

When his cousins finally prepared to leave, Martin re-commenced crying because, he claimed, he wanted them to stay.

Super.

My kid was exhausted, overwhelmed, out of his element, and probably still sick. His cousins, I am certain, thought he was weird.

A couple hours later, with Martin asleep for the night, I dialed Adrian on FaceTime. I decided to spare him the full report and give him instead this 100% accurate, albeit heavily edited, account of the day: “Guess what happened? Martin learned to blow his nose. He was crying and stuffy from his flu, and I gave him a tissue and told him to blow, and it finally clicked. I’ve been trying to teach him for years to blow his nose. This afternoon he managed. Hurray! Everything is great!”

Exasperation. For a Change, His, Not Mine

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Martin’s gaining independence delights me for my own sake as much as his. When he could finally be trusted not to leave the house alone or endanger himself climbing the outside of the staircase railing, I could finally shower even when he and I were home alone. When he learned to swim, I could let him play on the swingset without constant fear of the pool 10 yards away. And when Martin finally started getting himself into our SUV—climbing into his booster chair, putting his drink into the cup holder, buckling his seatbelt—that meant no more straining my back to lift him aboard, no more standing in rain or snow waiting for him to arrange himself so I could push his seatbelt across, no more bypassing coffee shops that didn’t have a drive-thru because getting him in and out was such a PITA. Now he even precedes me into the garage, so that when I finally come out, coffee in hand, he’s already settled.

Last month Martin and I were twenty minutes into a car trip when, stopped at a red light, I turned around to speak to him and realized his seatbelt wasn’t buckled. “Martin!” I said. “What’s going on with your seatbelt? Why aren’t you buckled?”

“I forgot!” Martin sounded alarmed as he seized the seatbelt and buckled himself. “Oh, I forgot to put in on.”

“Be careful, buddy. We’re about to get on the highway. That would have really dangerous.”

I’m pretty sure that was a one-time occurrence. Still, since then, I’ve taken to confirming before we leave home, or asking once we’re underway, whether he’s wearing his seatbelt. I rarely remember to confirm before we leave home, which means I’m doing a lot of asking once we’re underway. “Martin, are you buckled?” “Yes.” “Martin, are you buckled?” “Yes.”

Monday I got a different answer. “Martin, are you buckled?” “Yaaaaaa-esssss!”

Exasperation! Martin, the king of repetition and perseveration, was exasperated with my question. As a bonus, his exasperated, “Yaaaaaa-esssss!” had a determinately snippy tone, almost like a pre-teen might utter.

That’s not the place I’ve heard exasperation. We’re on an airplane, and Martin just asked me whether he could order an orange juice. I said no, because he had a juice box earlier today at BareBurger. When Martin was younger, his response to that disappointment would have been a meltdown. His more common response, these days, is a burst of nonsense: “I’m never going to have juice again, ever! Throw all of the juice away! Mommy, we’re going to give the juice to another family!” His response just now was one that’s emerged within the last week or so: “Awwwww!”, that whining protest that children use when they feel they’ve been unjustly denied a privilege. I also got an “Awwwww!” when he wasn’t allowed to watch television at breakfast and when he couldn’t watch Wheel of Fortune because I had the Rangers game on.

I’m not sure I’m ready for all this neurotypicality.

How Can You Just Leave Me?

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Forever and a day have passed since I last posted a quote. Today I’m thinking about the lyric to which I clung when Martin was first diagnosed:

How can you just leave me standing

Alone in a world that’s so cold?

When you realize your child has autism and might never have a conversation with you, might never again spontaneously acknowledge your presence, it does not matter if you have a supportive co-parent, an extended family, a pastor to call on, friends who step up. None of that matters, because when you call your child’s name and get nothing, nothing, in response, you are standing alone, and the world is a place colder than you ever imagined.

Nor did it matter that “When Doves Cry” is a love song, not a parenting riff. I am grateful to the man who asked, “How can you just leave me standing / Alone in a world that’s so cold?”, because his words explained my own emotions. From alone in a cold world, I plotted Martin’s (and my) return to society, our escape from autism.

Prince lost two children, one to Pfeiffer syndrome and a second to miscarriage. I suppose we’ve surrendered them all to a place that isn’t so cold. In this life, things are much harder than in the afterworld. In this life, you’re on your own.

MARTIN MADE FRIENDS

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As an undergraduate I studied journalism. We weren’t allowed to use quotes in headlines; the rule was, “When the Pope says, ‘F**k,’ you can quote it in a headline.”

There must be some similar rule for all-capital blog headers. You come to my blog expecting a certain consistency: photos that conceal Martin’s identity, headers in initial-capitals only, maybe some italics but nothing fancy. If I start getting all wacky—curly q’s or design changes, exclamation points, politics, profanity, bold, all-caps—I risk the impression of level-headedness I try to maintain, right? Finding My Kid relies on words and the power of Martin’s journey, not typographic tricks.

Except today. I don’t have words big enough to express what Martin has done, so—

Welcome to the first time Finding My Kid is shouting a header at you:

MARTIN MADE FRIENDS.

We’ve lived in our suburban house for almost three years. The yards in our enclave are large, so although we have neighbors, they are not bumped up against us. We know the neighbors, as in, we know who they are. The teenager next door babysits for Martin. We wave at the others, chat occasionally in the street. (You caught us: Adrian and I are hardly social butterflies.) Martin, however, has never shown any particular interest in children who live around our dead end.

What I’m about to relay is second-hand, as told to me by Martin’s nanny, Samara. I can attest that Samara is guileless in her storytelling, a real just-the-facts-ma’am operative. I work in the City Wednesdays and Thursday, so Martin is with Samara. Last Wednesday, by her account, Martin asked to ride his bicycle after school. She agreed and told him to stay close to the house. He announced that he was riding to the neighbors’ house. Samara, who could hear the neighbors’ six-year-old twin girls (Martin is seven) playing in their yard, asked Martin to wait. Instead, he looked directly and mischievously at her, smiled, and raced across the street to the neighbors’ driveway. By the time Samara caught up, Martin was talking to the girls. He’d met these twins once before, when we participated in a volunteer project at their home. He did not manage, that time, to speak with them.

Samara checked with the twins’ babysitter, who said it was fine for Martin to play in their yard. Samara then returned to our house, within eyesight, to start making dinner. After ten minutes or so, she realized that Martin had disappeared into the girls’ house. She waited a while and then walked back across the street. The girls had other friends over, pre-arranged, and while one sister was playing with them, the other sister was playing with Martin. He stayed another 45 minutes or so. When he returned home, he was proudly carrying a knotted keychain the twin had made for him.

Thursday after school, Martin got off the school bus and asked to ride his bicycle. He rode directly to the neighbors’ house, and upon seeing Martin in their driveway, the twins came out to greet him. Samara again checked with the twins’ babysitter, who again gave permission for Martin to stay and play. The three kids ran around together in the yard for 30 or 40 minutes, until the girls had to go inside to work on their homework. Martin rode back home. To Samara’s surprise, after half an hour, the twins (homework apparently finished) arrived with their babysitter and asked to play some more with Martin.

Meanwhile, from my office in the City, unaware of these Thursday activities, I emailed the girls’ mother to thank her for hosting Martin Wednesday afternoon. She emailed back to say Martin had been a pleasure, that she was thrilled the kids were playing together, and that her daughters were at my house at that very moment.

According to Samara, the girls left our house around dinnertime, and asked if they could return on Friday. Martin has trombone lessons and a social-skills play group on Friday afternoons, so that wasn’t possible; Samara plans to arrange a visit this week instead.

Friday morning, Martin told me he was taking the knotted keychain to school. He wanted to show it to his classmates and tell them about his new friends.

When Martin was still acquiring language, sometimes he would use a phrase or idiom correctly, one time, and then those words would disappear, only to reemerge later with consistency; for example, he once answered a question with “I don’t know” but didn’t say “I don’t know” without prompting again for months.

On Sunday, four days after Martin made his twin friends, his class had a play date. Half a dozen boys showed up to run around a playground. Martin joined their chasing and pushing for a few minutes, then chose to climb by himself. I think he still gets overwhelmed in a crowd, even a small crowd of his own classmates. Later the same afternoon, back home, Martin saw a girl his age, a stranger, riding her bicycle in the street. Immediately, he asked to go ride his bicycle. Adrian, who went outside to supervise, reports that Martin was clearly interested in the girl but couldn’t bring himself to speak to her; even when Adrian and the girl’s father tried to introduce the two of them, Martin hung his head and looked away.

Martin has friends, arranged by me, with whom he plays regularly. Meeting the twins across the street, by contrast, marks the first time Martin has made friends. Based on the experiences Sunday afternoon, I would say that making friends is like saying “I don’t know” once was: Martin showed that he has the skill, and now the skill will disappear for a while before reemerging with consistency.

He just needs to gain some confidence and remember to use the skill he evidently now has.

MARTIN MADE FRIENDS.

IMG_2630

This picture is not (completely) related to this post. But I am so excited that our cherry blossoms are starting to pop, and since we walk by this tree on our way to our neighbors’ house, I’m using that as an excuse to include the picture.

Compromised

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Sunday’s Weekend Edition had an interview with Arianna Huffington about her new book, The Sleep Revolution: Transforming Your Life, One Night at a Time, which reminded me of a post I’ve been meaning to write about sleep.

Or as it were, sleeplessness.

Martin’s early autism was marked by profound inability to sleep. He took an hour or more (sometimes up to three hours) to fall asleep and managed only a few hours before waking again for long stretches, like from 1:00-5:00 am, and then, maybe, sleeping another couple hours. When Martin was awake, I was awake: He yelled and cried, climbed out of crib or bed, and usually needed physical restraint to rest, or for any hope of returning to sleep. (A weighted blanket made no difference.) For more than a year, I survived on as little as two hours’ sleep per night, and considered six hours a luxury. When I did sleep, it was often on Martin’s bedroom floor, or contorted around his body in a single bed, or upright in the chair next to him. I drafted a celebratory post when I could finally lie in my bed even though he was awake, and again the night that I lay awake in bed because I finally wasn’t exhausted.

I’ve said this before, and I believe I will say it many times again: Sleeplessness makes autism so much the worse. Autism is emotional turmoil. Adrian and I have had to fight the system to seek recovery for Martin. I endure constant guilt about whether my own actions contributed to Martin’s condition. I’ve given up on having a second child, and at times I questioned whether my only child would ever live independently. All of that notwithstanding, the single greatest challenge of Martin’s autism, for me, has been sleeplessness. I understand why sleep deprivation is considered a form of torture. When you’ve had only 20 hours’ sleep over an entire week, nothing makes sense. During the most challenging, jittery months, I had to avoid sitting down during the day, because I might fall asleep, wherever I was.

Even when Martin became a better sleeper, I regret to report, I continued to squeak by with too little rest, juggling writing, autism recovery, the bad nights Martin still sometimes had, and as close to a healthy a marriage as I could muster.

Now, three or four years after the Great Sleeplessness, I make an effort to get at least seven hours’ sleep every night, and eight full hours as often as possible. I’m doing pretty well. But I know that my health still shows the effects of having gone so long without sufficient rest. Before Martin developed autism, I caught two colds a year, one in the winter and one in the summer, and other than that rarely was sick. Since the Great Sleeplessness, I’ve endured as many as four major illnesses per year, despite eating a cleaner diet than ever. Nowadays when I feel “something coming on,” I can’t assume that if I take it easy for a few days and lay off the gym, I’ll be fine. “Something coming on” now means that I’m going to be effectively non-functioning. That’s what happened a few months ago, in January: On a Saturday afternoon, I felt vaguely unwell. By midday Sunday, I was coughing uncontrollably. I had to cancel a Monday afternoon flight to California and ask my law partner to cover the mediation I had been scheduled to attend; from Monday afternoon, when Samara arrived (thank goodness, she had been scheduled to come and care for Martin while I was in California) until Thursday, when Samara went home, I stayed in bed. After that, I was able to rise and get through the day, but I remained out of sorts, with a persistent dry cough, more than a week later—at which time a chest x-ray showed I didn’t have pneumonia, and the doctor asked me to please, please consider antibiotics. I suppose I’ve become too reluctant to use pharmaceuticals.

When I was 21 and living in India, I caught dysentery and quickly dropped from 110 pounds (those were the days) to 95 pounds (bad idea!). I’m 5’6″, and it took months for my weight to cross back into triple digits. I also started feeling cold, almost all the time. I wore extra sweaters and slept under piles of quilts. As I recollect, the cold feeling, which was ignited by being underweight, stuck with me four or five years before fading. I’m hoping for something similar now. Constant exhaustion weakened my immune system. Four or five years of taking care of myself—fingers crossed!—should just about alleviate the issue. Check back with me in 2018.

For now, I am done with sleeplessness. I hate sleeplessness. I hate sleeplessness all the more for these points:

  1. Chronic fatigue has imposed a heavy burden on my well-being. If this is what happened to my body, what did sleeplessness do to Martin, who was a growing toddler? Moments like these, I am so very thankful to understand that autism is medical, and to have found biomed as a way to restore Martin’s health, and mine.
  1. For children and adults on the spectrum whose symptoms are more severe than Martin’s, or whose health doesn’t improve with interventions, this kind of sleeplessness may persist for years. Years. And the same can be said for their parents/care-givers. Years. Remember the study that found that mothers of children on the spectrum can suffer damage comparable to combat stress? I think I know a big reason why that happens.

Oh, dear. I feel something coming on again, and this time it’s snark:

Tell me again why “autism is an important part of neurodiversity” and we “shouldn’t be trying to cure autism”?

Contributions

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If you read yesterday’s tedious post about a Tuesday morning, you may have asked yourself why I, your blogger, was the parent doing everything. Adrian, who is not only my husband but also Martin’s father, was at home that morning. His role in the story was limited to showing up for toast and coffee, showering, and leaving later than usual in order to drive me to the train station. And goshdarn it, he got to sleep until 6:30.

Autism recovery is long and expensive. You know that. For me, the heartbreaking posts in my on-line biomed groups are the ones like, “I’m trying so hard to help my child, but my husband subverts everything I do,” or, “Before autism, we had a real marriage, but now I’m married to him only because I need the insurance,” or, “I’ve become a single parent, with limited resources. If you had to pick either organic food or supplements, which one would you buy?”

If parents intend to navigate the autism-recovery journey together—or even remain a loving, adult couple in the face of autism—they need to find their way to the same page, i.e., to talk openly and craft a mutually acceptable plan. In our family, by agreement, the division of labor is this:

Me:

Research treatments; schedule all doctors and therapists; plan necessary travel; monitor diet; procure and prepare special food; order and administer supplements etc.; coordinate childcare for when I’m working or otherwise unavailable; oversee detox baths and sauna use; inquire about and visit schools; keep medical and school records; serve as activity chauffeur; monitor home environment; be assumed-on-duty parent at all times except when advance arrangements are made (“Saturday afternoon from 1:00-3:00, I need to edit a brief. Can you take Martin?”).

Adrian:

Earn the money to pay for all this.

Whether this arrangement is fair depends on your viewpoint. I am the parent who had to give up my career in order to handle Martin’s recovery effectively. That being said, I am also the parent lucky and privileged enough to be able to surrender an office job and devote my hours to Martin. I am the parent who gets less sleep in order to juggle all that needs to be done, and who manages the stress of autism/ADHD. That being said, I am also the parent without office and workplace stress, with more freedom in how I organize my time. I am both the parent who has to do most of the day-to-day decision-making and the parent who gets to do most of the day-to-day decision-making. Adrian cannot cook or prepare supplements or measure detox baths; when I must travel alone, Martin’s nanny Samara stays in our home to take care of him. To take care of Martin and Adrian both, really. That being said, Adrian never begrudges my time away from home.

Moreover, whether our arrangement is fair does not matter one iota, because it is the arrangement that works for me and Adrian. The very big decisions, such as whether to undertake chelation, or where Martin should attend school, we make together. I may go so far as to prepare a presentation of alternatives, with supporting information, so that Adrian can help make an informed choice. My being the biomed parent does not negate Adrian’s being an enthusiastic and involved father. Martin is Adrian’s Mini-Me. They dress alike, go to the gym together, rock-climb together, ride bikes together. They get the more typical parent-child relationship. I get the rest of it.

Adrian likes to say that it’s to my credit, not his, that Martin is doing so well. He calls Martin my “masterpiece.”

I respond that I couldn’t manage this process without my partner.

The Bigger Perspective

Posted on by findingmykid
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Martin’s school is a self-contained special-education setting for children with speech and language disorders, including autism. The teachers possess patience and experience in equal measure, the administration is supportive, and I feel fortunate that has been placed there since kindergarten.

Yesterday, when I arrived to pick Martin up for personal training, I ran into the mother of Brian, another boy in Martin’s class. I’ll call the mother Chrissy. This is the third year Brian and Martin have been in the same class, so I know Chrissy well enough. Chrissy was picking up Brian, and as usual, she had her younger son, Aaron, with her. Aaron attends a special-needs preschool in the City, and I know that the family has been looking for a kindergarten spot for him, so I asked how the process is going.

“Good,” Chrissy replied. “I think we are actually going to be able to get a spot for him here.”

“Here? That’s terrific,” I said. “Both boys in the same school—they’ll be able to see each other, act like brothers. You must be happy!”

“Yeah. I’m happy.”

Chrissy didn’t sound happy.

“Not a great thing?” I asked, tentatively.

“I mean—both my kids are going to be here.”

Ah, yes. Of course. Both her kids will be in the superior self-contained special-education setting for children with speech and language disorders, including autism.

Because both her kids have autism.

Because we are losing a generation of boys, and a lot of girls, no one is doing anything about the crisis.

Past Tense

Posted on by findingmykid
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Years ago, when we were only a few months into Martin’s recovery, I was leafing through a magazine I found in our doctor’s waiting room. I don’t remember the publication’s title, or even its purpose; I think it may have been a resource for parents pursuing biomed.

What I do remember were a couple of personal-experience pieces written by typically developing teenagers in support of their ASD siblings. In one, a girl whose brother was already recovered talked about her brother’s autism and how it had led her to advocating on behalf of students with disabilities. Although my memory of the other details is nebulous, I can still recall this phrase: “During the time my family was affected by autism . . . .”

Those words struck me. They were so comforting, how they suggested that there can be an other side to autism, a time when autism is not a daily struggle, when recovery is not the long road (to where?) ahead, but when the reality has become a memory.

I’ve written now and again about autism symptoms that are so far gone that they no longer exist in my daily consciousness.

Martin, for official/school purposes, has lost his autism diagnosis.

We still have work to do. Lots of work. Martin’s executing functioning—meh. As a corollary, Martin’s attention span and ability to plan—ugh. Martin still has a diagnosis. “ADHD,” our new territory.

Yet—.

Last week I attended a conference in California, for the consumer advocacy work I do. I was meeting with the director of a non-profit organization devoted to monitoring toxins in personal-care and household products. She asked how I became involved in representing consumers.

I said, “Through my son. He had autism.”