Category Archives: Progress

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.

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.

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.

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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.

Past Tense

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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.”

Attention-Deficit Hyperactivity Disorder (ADHD)

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Because we are thinking about changing Martin’s school placement, Adrian and I decided to order a new neuropsychological educational assessment (a “neuropsych”). Martin also had a neuropsych three years ago, before he entered kindergarten, and last year. Those first two neuropsychs were completed by Dr. DS, a practitioner in Manhattan. This time we switched to Dr. PS, a practitioner in a suburb near ours, who knows our local schools and who had never before met Martin. Dr. DS and Dr. PS are mainstream neurodevelopmental psychiatrists, not biomed practitioners. Before Dr. PS started her testing, I enumerated Martin’s issues at this time: paying attention, sitting still, emotional regulation. I did not say “autism,” though she certainly must have seen that word on the previous neuropsychs and the school records I provided.

We had our parent meeting with Dr. PS last week, after she’d had three lengthy testing sessions with Martin. She told us that Martin’s primary trouble lies in executive functioning. She diagnosed him with ADHD, compounded by social/pragmatic language delays.

She didn’t mention “autism.”

Adrian asked, “You’re saying he has attention deficit and hyperactivity?”

Dr. PS answered, “Really, hyperactivity is a minor part. The primary issue is attention deficit, this inability to focus. That stems from the executive functioning and affects his performance in many areas, including school.”

Adrian is Adrian. He likes concrete, definitive responses. He asked, immediately, “Um, why don’t you think Martin has autism?”—not the question I would have posed. I like to leave well enough alone.

Dr. PS said that different practitioners come at executive functioning in different ways. Martin, she said, presents with “a little bit of this, and a little bit of that,” such that, perhaps, a doctor focused on autism might find a mild spectrum disorder. In Dr. PS’s opinion, however, Martin “does not meet the diagnostic criteria for autism spectrum disorder.” He presents much more strongly as a child with attention deficits. True, he retains difficulties with social/pragmatic language, but he is eager to socialize and keenly aware of others. No, she concluded, he doesn’t have autism.

“So,” I said to Adrian as we climbed into bed that night, “we don’t have a son with autism anymore.”

Adrian paused. Then he replied, “I guess we’ve known that for a while.”

I guess we have.

Martin can express himself, now. Martin doesn’t really have repetitive behaviors, anymore. Martin’s perseveration, which once was literal inability to stop speaking, has faded to a penchant for prattling about obscure topics, like marching bands and features of my car’s dashboard. Martin knows exactly what other kids are up to. He won’t let me affix a sport strap to his glasses anymore, because “Zach and John don’t have straps on their glasses.” Martin is awkward, socially, and his attention span has the half-life of hydrogen-7. But “autism”? These days, that seems too harsh.

On the other hand, it feels strange—to say I don’t have a son with autism. We still have a lot of work to do with Martin’s executive functioning, and the spectrum has been a driving component of our life, even of my own identity. We socialize with other autism families. We swap articles about autism. I even pre-board airplanes, on the basis that “my son has autism.” (The pre-boarding will have to stop. I will let airline attendants draw their own inferences, but I won’t lie.) Autism, autism, autism. What do I do now? Find ADHD friends?

Adrian and I have never been public about Martin’s diagnosis. Indeed, we’ve gone to lengths to hide his autism. In part, that’s because “autism” is a scary word. ADHD or ADD, not so scary. People seem to love to self-diagnosis with ADD. Maybe now we can go public with that moniker.

Almost six years ago—the summer that Martin turned two—was when Adrian and I started to realize that Martin had “issues.” Other kids blew out the candles on their birthday cakes. Martin stared into the abyss over his own cake. (We later discovered he lacked the ability to pucker, or to blow.) In the toddler soccer program, when the coach said, “Run and kick a cone,” nine kids ran and kicked a cone. Martin wandered to the next field and tipped over the goal.

By that fall, we were sufficiently concerned to ask a high-school friend of mine, an EI provider, to come take a look at Martin. She did, and she knew immediately that he had autism. The first psychologist, sent by New York City only a couple weeks after my friend saw Martin, said, “It’s autism. You might call it ‘high-functioning autism,’ or, ‘Asperger’s syndrome’.” But though Adrian and I didn’t realize it, Martin was backsliding. He had already lost eye contact and was becoming less responsive every day. By the time the Big Imposing Hospital’s neurodevelopmental team got hold of Martin, several months later, there was no mention of “high-functioning” or “Asperger’s.” They diagnosed Martin with moderate autism and threw in the kitchen sink of co-conditions: delays in every type of communication, low muscle tone and lack of proprioceptive awareness, sleep disorder, possible cognitive impairment, and on, and on, and on.

Let’s call that the low point.

Fortunately, we had already started biomed and the tedious brick-by-brick struggle to free our son from autism.

When he was three, Martin’s special-needs preschool removed him from a self-contained 12-1-1 classroom (12 special-ed students, one teacher, one aide) based on his need for more supervision, and his inability to keep up with the other developmentally delayed three-year-olds. The school placed him instead in an 8-1-2 classroom, in which two other students had 1-on-1 aides (in total, eight special-ed students, one teacher, two classroom aides, and two dedicated aides). Martin was left in that classroom for two years.

When it came time to find a kindergarten—we lived in New York City, where kids don’t just go to the local school, as they might elsewhere—we had Martin’s first neuropsych done. Dr. DS, the Manhattan neurodevelopmental psychologist, confirmed the autism diagnosis as “not a close call.” He told us that our desired elementary school, which has 12-student special-ed classrooms, would not provide enough support for Martin, and would be likely too advanced, academically. He said we were “really looking more at a need for 1-on-1 support” or a six-student ABA classroom.

Forget that, Adrian and I decided. When the desired school, with the 12-student classrooms, accepted Martin, we sent him there. And he excelled.

Two years later, before second grade, it was time for another neuropsych. To get a reasonably comparative assessment, we brought Martin back to Dr. DS.

Dr. DS admitted that he had been mistaken to think Martin wouldn’t make it at our chosen school. In fact, Dr. DS was not so sure Martin still needed all the support the school offered. “I’ve seen some remarkable progress,” Dr. DS said when he presented us with Martin’s report. Martin had moved from the third percentile to the 83rd percentile in receptive language, for example, and though the autism was still prevalent, he had made tremendous gains in other areas, too. What were we doing?

I told Dr. DS about our biomed protocol and nontraditional therapies, like HANDLE and Anat Baniel Method. He listened. At least he appeared to listen. When I finished, Adrian asked Dr. DS what our next steps should be, and Dr. DS said, “Medicate Martin. Now is a good time to start experimenting with medications, so that by the time he reaches third grade, when the curriculum becomes more advanced, you will already know the best combination and dosage of medications, whether it’s depressants, stimulants, or something else.”

Thank you, Dr. DS!

Another year passed, and this time we brought Martin to suburban Dr. PS, who opined that autism spectrum disorder is no longer the correct diagnosis for Martin. She said that her testing revealed an upward trajectory from Dr. DS’s reports. While Martin once had significant delays in all four areas of language, Dr. PS said, he now exhibited delay only in pragmatic/social language. “So looking at his history,” she said, “we can see that Martin was not destined to be a child with receptive or expressive language problems, as those have faded away.”

Destiny? I asked myself. Destiny didn’t resolve Martin’s receptive and expressive language delays. Biomed did.

“What should we be thinking about for next year?” Adrian asked.

Three components, said Dr. PS. First, the choice of school setting. Second, additional therapies and resources. And third, medication. It’s time to start experimenting to find the best medication for Martin’s ADHD.

I’m tempted to write, Thank you, Dr. PS! There’s an addendum, however. I told Dr. PS that we are “hesitant” to medicate Martin because doing so would interfere with our biomed protocol. The progress we’ve made, I explained, has resulted from a restricted diet, supplementation, and constant reevaluation of Martin’s health needs. Dr. PS—remember, she’s a mainstream neurodevelopmental psychiatrist—asked pertinent questions, like what kind of doctor we see and whether the protocol is test-based. (There are charlatans in the autism-recovery universe. I know that.) After I provided sufficient reassurance on those points, Dr. PS said we are probably right not to medicate at this time. If what we are doing biomedically is working, she said, then we should exhaust that route. Experimenting with medication does not have a time limit, and it is okay to start later.

So, actually, really, thank you, Dr. PS. Thank you for listening and reconsidering.

And, for my readers, especially my long-term readers, here’s a special tidbit: Do you remember my lengthy post about Mr. and Mrs. Twice-Exceptional, the Quirky Genius School, and the movie The Imitation Game? You might want to revisit that one.

As she was reviewing Martin’s test scores with us, Dr. PS pointed out a wide discrepancy in the different fields. In many academic areas, including reasoning and some language-based tasks, Martin’s scores were at the top of the bell curve, well above the average range. He uses his formidable intellect and those stand-out skills, Dr. PS said, to compensate for his still subpar executive functioning.

“You see,” Dr. PS told us, “your son is what we refer to as ‘twice-exceptional’.”

Moments

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The moment in a ski lodge when your ASD son—whose Lyme-disease treatment has rendered him so hyperactive that your brother Eddie just had to eat half his dinner holding a squirming boy on his lap, to prevent that boy from ransacking the restaurant—hits the “Floor 1” button in the elevator, then turns directly to three adult men who’ve entered and inquires, “Are you also going to the first floor?”

The moment in the airport security line when your ASD son—whose Lyme-disease treatment has turned him so inside himself that he doesn’t always realize when you’ve started speaking to him—takes his trombone case off his shoulder and holds it proudly in front of him, hinting for the TSA officer to ask him about the instrument, and then answers her question with, “Yes, I am very good at playing the trombone. I even take lessons, every Friday.”

The moment in a Whole Foods Market café when your ASD son—whose Lyme-disease treatment has left him so anxious that he burst into sobs when he lost sight of you, momentarily, in a trampoline center—finds his way to the napkins and silverware, selects the right quantity of each, returns without delay, and sets the table, without being asked.

The moment in a restaurant when your ASD son—whose Lyme-disease treatment has made him so sensory-seeking that he continually puts you in tight headlocks, whenever he’s not trying to wipe his nose on your sleeve—lets you cut his roast chicken, then says, “Thanks! I was getting frustrated with that.”

The moment in the car, in Northern California, when your ASD son—whose Lyme-disease treatment is causing him to perseverate on marching bands and musical instruments, regardless of what conversation is actually happening—calls from the backseat, “I like Southern California better. Uncle Rudy lives there, it’s warmer, and it borders Mexico,” and follows up with, “Why do you say you like Northern California better, Mommy?”

The moment when the new neuropsychologist evaluating your ASD son—whose Lyme-disease treatment has made him so drunken-silly that he interrupted the neuropsychologist’s testing with a giggle fit, and later became infuriated with a challenging exercise and shut off her computer—tells you, “I definitely see issues here. I would say primarily ADHD, and secondarily speech processing delay,” and never once mentions the A word.

Easy Peasy, Puddin’ Squeezy

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Martin’s school sent home a note to all parents, asking us to make sure our kids keep sneakers in the classroom, to wear to the gymnasium.

I, of course, could not remember whether Martin has sneakers at school.

So I asked him.

And he answered, with a nod.

“You do?” I asked. “Which ones?”

“The blue ones with the yellow swoosh,” he replied.

“Those old ones? Do they still fit?”

“They fit. I tie them myself.”

I used the italics, above, for the benefit of those readers outside the autism community. The others, like parents with a child on the spectrum, know the import of asking my child a question, expecting an answer, and still more, expecting an accurate answer. Once upon a time (for example, last year or any other time in memory), finding out whether Martin had sneakers at school would have required writing a note to his teachers and awaiting their response. Being able to ask him—that’s way more convenient.

Last Saturday, while Adrian was out of town skiing, Martin “took me out” to lunch. We had just settled into our seats when Martin said he had to go to the bathroom. “All right,” I said, “go ahead.” He left the table. He returned five minutes later, his hands still damp from being washed. As far as I can tell, nothing eventful happened between our table and the restroom. Later, I left the table for a minute. I asked Martin to stay put, and gave him my iPhone to amuse himself. He stayed put. When I returned, our waiter said casually, “Your son told me you’re going to the trampoline place this afternoon. Have fun!”, as if my son telling the waiter our plans were an everyday occurrence.

In fact, even though Martin was hyperactive and off balance from his Lyme treatment (again!), the whole weekend that Adrian was away ran smoothly. Friday evening Martin and I went to meet his new trombone teacher. Remember how disappointed Martin was when he didn’t receive a trombone for Christmas? Since then, he’s persistently asked to start trombone lessons. Finally I called music schools—most instructors weren’t willing to work with a child younger than 10—until I found a jazzy older fellow who said something like, sure, we’ll just find an alto trombone so your son’s arms aren’t too short to reach every position on the slide. We ended up buying an alto “pBone,” which is a real instrument whose exterior is plastic instead of brass (with a resulting price decrease!). The teacher-student meeting went well, and since then Martin has started his lessons.

Saturday morning Martin and I attended a student production of Cinderella at a local school, then went out to that lunch, and then met another family for a play date at the trampoline center. For dinner I made a cashew-carrot soup, which Martin ate with a spoon, instead of the stainless-steel straw on which he used to rely. Sunday we went to church—Martin participates in Sunday school with the other kids—and then to his hockey lesson. He chose to spend extra time on the ice after his lesson ended.

Once upon a time I dreaded weekends without Adrian; activities with Martin were a chore, but downtime at home resulted in stimming and meltdowns. Last weekend, the Lyme treatment had Martin at his worst. (Things haven’t improved much; stay tuned.) His worst right now is so much more manageable than his best used to be.

I’m thinking right now about parents of neurotypical kids. For sure, they have their own challenges. That being said—holy cow, parenting a child who can answer questions, complete simple tasks alone, and amuse himself for a few minutes now and again feels almost like doing nothing at all.

Parents of neurotypicals: Is it always like this?

I know that we have travails to come, as Martin continues to recover. At some point, he will transition from special education to general education, and we will have to worry about bullying and self-esteem. As he understands more about what his friends and classmates want, peer pressure will become an issue. And we have travails now. Martin’s continued perseveration, though milder than it used to be, perversely annoys me even more. The uneven temperament that comes with the Lyme treatment is bewildering. Parenting Martin will never be laissez-faire, at least not for me.

But, actually, maybe it kind of will be easy. If raising Martin had been like last weekend all along, I might just have more kids. Lots more.

Clapping. Whispering. Not Simultaneously

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I planned to write an informative blog post about the role of mitochondrial support, and how going back on MitoSpectra has helped Martin since last week. But now I’m excited by events at church and want to write about them instead. That other, more informative post will just have to wait. Sorry not sorry.

At children’s time this Sunday—after the Gospel, before the choir anthem—the kids were invited to come sit in the front pew, which was empty, because, well, it’s church. Martin dawdled, of course, and by the time he arrived, the other kids had packed the pew. Martin exclaimed, “I don’t fit!” The congregation laughed. We got him seated. The substitute pastor gave a talk that was too long for little kids, and kind of boring. Still, other than making some funny noises with his mouth, which is a stim he has when his adrenals are stressed (I think), Martin did okay, looking around and enjoying the front pew. Then, after the too-long talk, the substitute pastor asked the kids to stay put for the choir anthem. I got worried; music excites Martin, and I thought he might call out.

He didn’t. He listened as the choir sang “Soon and Very Soon,” a song he knows. It was the Andraé Crouch version, in a setting by Jack Schrader, and in the last stanza the choir began a slow clap. For me (I was tragically born without a sense of rhythm), it wasn’t an intuitive clap: not every beat, hard to hit just right.

Martin began to clap. Not to clap randomly—he started to clap along with the choir, exactly right, exactly keeping time with their slow, challenging clap. I was blown away. It’s long been a challenge to get Martin to keep time with anyone, whether walking, or talking, or running, or playing. Evidently, not anymore. Only one or two other kids clapped, so Martin had to watch the choir and take their cues. He succeeded.

That was enough to make my day. Later in the service, however, Martin delivered even more. His next feat came after communion. He’d already gone downstairs to Sunday school and come back up, carrying a picture. He’d drawn a marching band (that’s a favorite motif) passing in front of the church, and he wanted to point out the details. “This is a trombone, and look, here is the pastor watching them.” The time that Martin picked for his exposition was also announcement time, when the substitute pastor was recognizing birthdays and reminding everyone about the men’s breakfast group and charity gift drive, so I put my index finger to my lips and shhh!ed Martin.

Martin kept talking (predictable) but switched to a whisper. Martin has never whispered unprompted before, and he’s never been able to sustain a whisper more than a few words. Now he switched to a whisper and kept it going, sentence after sentence. The drummer was carrying his drum set, he showed me, and there was a tuba player, and here were all the people standing on the sidewalk applauding. Whisper, whisper, whisper. I didn’t try to shush him again. I ignored the church announcements and whispered back. We whispered an entire conversation.

Before the final song, Martin asked to take his snack and go to the common room, where we have coffee hour. I let him. After a minute he jogged back into the sanctuary. The choir was exiting, down the center aisle. Martin stood just inside the doorway, across the sanctuary from where I was, and caught my eye. I motioned for him to come to me. In days past, Martin would have ignored that and called to me from across the sanctuary, regardless of what was going on. This week, instead of calling out, he came. He jogged, ducking around the choir robes, to my seat and asked quietly, “Um, may I please start eating my snack?” I figured that an adult must have seen him in the common room and, knowing he follows a restricted diet, told him to go ask his mom whether it was okay to eat the snack. (Understanding and conscientious parents? Very patient parishioners? We are so blessed.) “Yes,” I said. “Go ahead.” And he disappeared again.

Later, when I had made my own way to coffee hour, I was approached by a woman I don’t know. She introduced herself and said she’s been coordinating the Christmas pageant this year. (Martin has been cast as “Shepherd No. 2.” He has two lines, which he has memorized.) “I just wanted to tell you,” the woman said, “your son is a joy. He is an absolute joy to work with.”

Boo-yah. Can you see why I decided to leave mitochondrial support for tomorrow?

Hot Summer in the… in the… Suburbs

Posted on by findingmykid
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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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Why Can’t We Cross the Finish Line, the Nonexistent Finish Line, Together?

Posted on by findingmykid
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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.