Category Archives: Milestones

When in a Rut, Turn to the Little Things

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I wrote yesterday that Costa Rica isn’t boosting Martin as much as I’d hoped. I’m going to console myself today with more musings on the little things.

About Martin’s birthday-party weekend, I wrote recently:

Although Martin’s Friday-afternoon birthday party was likely the highpoint of his weekend, it was not the highpoint of mine. . . . Sunday morning, . . . Eddie took Martin to the birthday party of a classmate (!) at an indoor sports facility. They arrived 10 minutes late, and the kids were already organized into groups for a game. According to Eddie, as soon as he and Martin entered the facility, a boy yelled, “Hi, Martin!” and another yelled, “Come join our team!”

Hearing that report, dear readers, was the highlight of my weekend.

A week before the birthday party, Adrian and I had attended the third-grade concert at Martin’s school. The third-grade orchestra performed. Martin is not part of the orchestra; he has opted to wait until fourth grade and join the band instead. (He’s been selected to play baritone! Get a load of that!) After the orchestra’s two songs, the third-grade chorus took the stage. Every third grader, about 90 of them, sings in the chorus, Martin among them. Per the instructions we’d received, Martin wore a white dress shirt and a tie. Actually, it was a bow-tie he’d chosen himself from the selection of several neckties and bow-ties I’d offered. He stood very still, in the back row with the taller kids, no fidgeting, a serious expression on his face. He sang every word. When the recorder portion of the concert arrived, each third grader lifter a recorder to his or her lips, and so did Martin. He didn’t accidentally drop his recorder; that happened to a kid one row in front of him. Martin played the recorder notes as carefully as he’d sung. He was brilliant. What’s more, the kids performed one of my favorite songs, Louis Armstrong’s “What a Wonderful World.” I almost cried.

So what was my favorite part of the third-grade concert? Martin’s beautiful notes, raised in flawless timing with the other young voices? The way he took ownership and picked his own tie? The solemnity with which he executed the performance?

No. None of that. After the concert concluded, when the parents were rising from their seats, when the teachers were entering to claim their charges, and the third-graders were kind of milling about the stage, I watched Martin casually start talking to the boys on either side of him. I recognized the two boys as friends from Martin’s classroom, and I felt certain they’d been placed together by design—exactly the type of detail to which Martin’s wonderful teacher attends. There they were, three boys together, talking to each other. Like all the kids were talking to each other. That’s when I actually started to cry. I lowered my head in embarrassment and brushed away tears. (When I saw Martin’s teacher a minute later, she was brushing away tears of her own and said, “I can’t even.”)

Last night, we went out to dinner. Martin waited for me and my mother (she’s visiting) to place our orders. Then, by himself, speaking in Spanish, he informed the server that he can’t eat gluten, dairy, or soy; placed his order; and asked the server to confirm that the appetizer and entrée were appropriate for his diet. He capped the production by making eye contact and saying, “Gracías.”

This morning, when I dropped Martin at his day camp in Costa Rica, a boy exiting the car behind us called, “Hi, Martin!” and Martin turned to respond, “Hi, Zach!”

When things aren’t going so well, as generally they aren’t right now, I have a weapon against frustration: I have the way in which Martin’s recovery has transformed into joy the moments that most parents take for granted.

I mentioned that Martin has been chosen to play baritone in band next school year. Each student who’s joining band gave the music teacher three instrument choices, and auditioned on each instrument for the teacher to decide which fit best. Martin has taken two years of trombone lessons and (at his insistence) one year of drum lessons, so I was surprised when his three choices were saxophone, clarinet, and baritone. To me, he said only that he thought those would be best for him.

Subsequently, Martin’s psychologist told me what he’d disclosed to her: That he knew trombone, and especially percussion, were two of the most popular choices for third-graders. He was worried that, with his prior lessons, he might get percussion, and then other kids would be angry or upset with him if he took the very popular choice and did not do the best job.

This was the first time, Martin’s psychologist added, that she’d seen him exhibit such foresight, and put himself so directly in the minds of his classmates. This, she assured me, was a leap in social advancement.

See how that works? My kid was unjustifiably too worried to request the instrument he really wanted—and I get a victory out of the deal.

Current Issues

Posted on by findingmykid
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We are off to visit Martin’s biomed doctor. I made a list of issues to discuss, which includes the following:

  • skin rashes, in the form of blemishes that Martin scratches and picks at until they bleed;
  • itchy skin overall;
  • impulsively calling out words he doesn’t mean, in a manner almost like Tourette Syndrome (Martin does not have Tourette);
  • obsession with foods, allergies, which foods he can or cannot eat, which are treats, and so forth;
  • trying to understand tough situations by putting Minions into those situations, like, “Bob [a Minion] was on the playground and another kid said he couldn’t use the swings. Is that nice?”;
  • constantly apologizing, which has been an ongoing habit.

(There were other issues on the list, too personal for sharing on the blog.)

What are your guesses, readers? Parasites? Metals? Lyme activity because we started using cryptolepis to treat babesia? A different form of the yeast beast? Dry winter air? Noticing differences between himself and other kids?

I’ll fill you in after our appointment with the biomed doctor.

And before you worry that Martin’s recovery is off the rails, I will add the following:

First, Martin’s self-awareness is blossoming. Even his teachers have noticed. After school last week, Martin confessed that he had hurt his friend Nicole’s feelings by calling her “racist.” (In light of Black History Month and Martin’s classroom unit on civil rights, our family has been doing a lot of talking about racism and our country’s legacy of segregation. I think he was angry at Nicole, and “racist” was the first insult he happened upon.) He added, “Sometimes words come into my head that I know I shouldn’t say, but I can’t stop them before they come out of my mouth.”

Second, this morning, by phone, Adrian said, “This past month or so, I’ve been having these awesome moments with him, where he’s just acting like a regular kid, and I can finally think, ‘This is it. This is the way it’s supposed to be. This is the reward’.”

Emerack Bitter

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Last week Martin opened a restaurant.

He woke one morning and said that he was launching a restaurant and that in fact the grand opening would be that very evening, in his bedroom. I thought he might forget about this plan over the course of the day, but nope. After school and homework and taekwondo practice, and without even asking for his iPad (his usual request when the obligations are done), Martin scampered to his bedroom and shut the door. Half an hour later, when Adrian arrived from work, Martin reappeared in the kitchen and asked whether we’d like to attend the big event.

“Welcome to Emerack Bitter!” he said as we entered his room. Indeed, a handmade paper sign, propped against the hallway molding just outside the door, read “Emerack Bitter.” What a name!, I thought. Sounds like Brooklyn’s trendy new bourbon bar. “Panda is the host,” Martin continued, gesturing toward a stuffed panda bear perched on a cabinet. “Would you like to request a table? And here’s Bob, the owner. Maybe shake his hand and congratulate him?”

Adrian and I played along as Martin showed us the great turnout. Emerack Bitter’s eight tables were all occupied, with stuffed animals seated in groups, including its largest table, where six animals were eating. Opening night had entertainment, too: A mechanical bear in an Elvis costume, with a guitar. Beside Elvis Bear was a handmade sign instructing guests to “follow him on-line at http://www.ElvisBear.com.”

I ordered a smoothie, to Martin’s delight. He asked which fruits I would like, then pretended to load them into a blender, pretended to place the top on the blender, pretended to pulse the blender button, pretended to pour the mixture into a cup, pretended to add a straw, and finally pretended to hand me my smoothie before taking Adrian’s order.

If perhaps I am harping too much on the pretending aspect, it’s because Martin has never really engaged in this type of pretend play, never invited others to join him in an imaginary setting. I realized quickly that Martin was combining experiences he’d had in Nicaragua. We attended the grand opening of a friend’s restaurant, where we complimented the owner on the full house and enjoyed live entertainment, a signer/guitarist with (you guessed it?) a sign telling us to follow him on-line. Separately, every afternoon we purchased smoothies at a roadside stand, where Martin watched the proprietor write orders and load fruits into a blender.

Seven years ago, after we realized something was different about Martin, I filled out various questionnaires designed to help determine whether he was on the autism spectrum. Each one asked whether Martin engaged in pretend play or acted out imaginary scenarios. “Never,” I circled, time and again.

I understand that a child recovering from autism may “go back” and meet, on a delayed basis, typical developmental milestones that he missed along the way. I was excited to tell Martin’s psychologist about Emerack Bitter. She seemed pleased, too—although when I said, “I know that pretending like that is characteristic of a kindergartner, not a nine-year-old” she took some wind from my sails by replying, “More like a three-year-old.” She added that, in her office, Martin had recently created a scene of soldiers, including one lying belly-down and aiming a gun. Martin had said the gun was actually a camera, and that the soldier was using it to take a picture of another soldier he placed on a castle balcony. (Quite an assemblage of toys in the psychologist’s office!) This was new, the psychologist said, this ability to see from the soldier’s perspective and understand where his camera would be aimed.

Last weekend, at a softball game, I had a beautiful hit that cleared the centerfielder and sent her chasing the ball deep into the outfield. Unfortunately, as I rounded toward second, I missed touching first base. I had to go back to touch first base and continue from there. The fiasco converted my probable homerun into a triple instead. But in the end, it didn’t make any difference that I had to return to touch first base. The very next batter hit a solid line drive, and I crossed home plate, just a little later than I would have otherwise. No one cared. A run is a run.

After the grand opening of Martin’s restaurant (upon additional consideration?), he announced that the owners actually were Don Emerack and Dawn Bitter, and that they thought it was so funny that their first names were almost homonyms that they decided to combine their last names for the restaurant.

I think it’s a pretty cool name. Look for the next Emerack Bitter near you.

Daily Meatballs

Posted on by findingmykid
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Most school days, I pack meatballs for Martin’s lunch. Specifically, spicy buffalo meatballs, which I make by combining bison chorizo with minced vegetables. I send spicy buffalo meatballs for four reasons. First, Martin finishes them. I don’t have to worry about lunch coming home half-uneaten. Second, they are easy, insofar as one package bison chorizo, plus vegetables, makes a three-day supply, which I prepare in advance, leaving only the cooking for the morning before school. Third, they keep well and are not a food that becomes soggy or unattractive in the hours before lunch break. Fourth, they fit well within the cycle of Martin’s diet. He eats meat no more than once per day; tucking the meat meal into the school day frees me to prepare a vegan dinner for the whole family.

Yesterday evening, I made sweet-potato-and-lentil shepherd’s pie, which was a triumph, unlike last week’s disastrous attempt at vegetable-and-white-potato shepherd’s pie. The triumph went quickly:

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In sum: spicy buffalo meatballs. Lots of spicy buffalo meatballs.

Last night at dinner—the aforementioned shepherd’s pie—Martin said, “Mommy, would you stop sending meatballs to school all the time? Sometimes I want something different.”

Readers, what a moment! How much do I love that my son has the functional language to express his preferences and advocate for himself? How much do I love that he wants variation? Immediately I recalled a news piece I once about a young adult on the spectrum, living independently, who was anxious to date but impeded by, for example, the fact that he refused to eat anything but canned tuna for dinner.

“What would you like instead of meatballs?” I asked Martin.

“Rice,” he answered. Of course. I limit rice in Martin’s diet, and he schemes for any opportunity to get those little grains into his mouth.

I said, “Your point is well-taken. I’ll see what I can do.”

This morning we were late for the school bus. We were late because I needed some extra time to make Martin’s lunch:

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Addendum on the topic of last week’s disastrous attempt at vegetable-and-white-potato shepherd’s pie. That recipe didn’t work at all, turned out bland, and my last-minute efforts were insufficient to inject any pizzazz. Plus, the recipe made too little potato topping and too much inside filling. I was, however, able to salvage a small victory. I removed the extra filling and processed it into a paste. The next morning, I spiced the vegetable paste, combined it with an egg, and fried the batter into savory pancakes. Martin loved the makeshift breakfast.

 

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Del Sur V: Manifesto

Posted on by findingmykid
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“Do you know?—maybe it’s possible that he never had autism?”

These words were spoken innocently, by a sympathetic party, and (I suspect) without forethought. It was late evening in South America. Martin was asleep. My mother-in-law and I sat in her kitchen, chatting, I with a glass of white wine, she with her pisco sour. We were discussing Martin and his progress; I mentioned that his official diagnosis had changed from ASD to ADHD with social/pragmatic language delay. My mother-in-law responded, “Do you know?—maybe it’s possible that he never had autism?”

My mother-in-law supports everything we do for Martin, and does her best to accommodate; we arrived from New York to find her fridge stocked with organic produce (still hard to procure in her area) and a cow knuckle and vegetables simmering on her stove, for Martin’s broth. That being said, I’m not sure she fully understands biomed, or our start point and desired endpoint. This is no criticism of my mother-in-law. I’m not convinced that anyone outside the thick of recovering a child understands autism or what healing requires. I’m not even convinced that I understand autism or what healing requires; I’m just a few paces farther down that road than others are.

Still, when my mother-in-law offhandedly suggested that maybe Martin never had autism, I bristled. I bristled because I think I will hear that suggestion a lot, as Martin continues to become more typical. Already I hear hints. A friend who has a mostly nonverbal seven-year-old and does not do biomed remarked recently about how “maturity” is resolving a lot of Martin’s issues. The friend meant no harm; in her mind, biomed doesn’t work, so she needs something else to explain Martin’s emergence from autism. (I didn’t pursue the issue further. I’m cautious, with other autism parents. We’re all doing what we think we can.) And remember the neurodevelopmental psychiatrist’s words? According to her, Martin developed functional language because he was “not destined to be a child with receptive or expressive language problems.” It’s not biomedical interventions. It’s destiny!

I know, from other blogs and on-line communities, that parents who manage to recover their kids from autism face skepticism that their children ever had autism. You may ask, why should they care? The opinion of naysayers doesn’t affect their children’s recovery. Why should I care if another autism parent wants to chalk Martin’s ongoing recovery up to “maturity,” or a doctor implicates destiny over hard work?

Well, I care, we care, everyone should care, because denying biomed has far greater implications than just adhering to ingrained misconceptions about autism.

It is possible to recover from autism. Not to learn to live with autism’s symptoms, which is what behavioral therapies teach, but to eradicate autism by treating the disorder’s underlying medical causes. I know this to be true, because my son is recovering from autism. I’m not deluded. I have the blood work and urinalysis evincing his medical issues. I have the series of neurodevelopmental psychiatric reports describing his detachment, his lack of language, his emotional instability. I witnessed too well his lethargy and physical discomfort. I endured his sleeplessness. I have watched, over five years, as his medical issues alleviated and the autism symptoms improved in tandem.

Every case of autism is different. Yet there are commonalities. The presence of autism points to an immune disorder rooted in the gut, where 70% of the immune system resides. A healthy gut biome has plenty of good bacteria to keep germs and infections at bay. When something depletes the good bacteria—say, antibiotics, or glyphosate—the bad guys start to party. Any further insult, like insufficient vaccine absorption or exposure to environmental toxins, can cause the whole immune system to jump its rails. When you’ve got no properly functioning immune system, you can find yourself with a host of secondary problems, like neuroinflammation, excess propionic acid, a struggling thyroid, glutathione depletion and methylation troubles, opportunistic infections, an inability to secrete heavy metals. And then? Neuron misfires. The endgame that manifests in autism.

Autism rates are on the rise. Stunningly. Think of those graphs that represent worldwide human population: Autism’s growth is similarly exponential, even according to conservative CDC figures. The epidemic is not the result of greater awareness, or expanded diagnoses; if it were, we would expect to see most cases clustered at the mild, almost debatable, end of the spectrum, where the merely “quirky” kids reside. Instead, new autism diagnoses litter the entire spectrum. Non-verbal, acutely affected autism is on the rise just like Asperger’s. Those who deny the rising autism rates are the willful ignoramuses and the irrational optimists. I am out of patience for either.

We don’t know, yet, what “causes” autism, though every day we learn more about factors that may contribute to the development of autism. I mentioned a few above: overuse of antibiotics, unsafe vaccinations, pesticides. Activists speculate about the role of pollution, about electromagnetic fields, about C-section births (or not) and the newborn’s chance to benefit from the vaginal biome. Genetics also play a role, such as the MTHFR mutation or UBE3A mutation.

(Note this: Accepting that genetics play a role in development of autism is not saying that we “can’t do anything about” the autism epidemic. The genetic predisposition to autism has probably been around many generations; only now do new environmental triggers spur the subsequent development of the disorder. Plus, more and more we have to speak not of genetics proper, but of epigenetics, mutations with the capacity to arise or dissipate between generations, or even within a single generation.)

Which brings me to many people’s resistance to accepting the notion of biomed. If we accept that we can reverse autism by resolving the factors that caused it in the first instance—then we admit that something is causing autism. Based on the exploding autism numbers, whatever is causing autism is getting worse. In an over-hygienic world devoted to unlimited consumption, exploitation of animals and the environment, a pill for every ailment, and the temple of convenience, we are doing something wrong. Disastrously wrong. In that regard, progress has stopped. Unless we change course, each successive generation will pay a higher bill for our abandonment of what is natural.

Unfortunately, almost no one seems to want to change course. So people deny that autism is on the rise, or that autism has causes, or that autism can be treated.

This is why I bristle to hear that maybe my son never had autism, or that he’s moving off the autism spectrum because of something other than biomed. It is also why I do not support the “neurodiversity” movement. Don’t get me wrong: I support the goal of inclusion and accommodation for persons living with autism. Did someone insult or exclude your family member with autism? Call me. I will gladly rush over and go Brooklyn on the jerk. But do not hand me acceptance of autism itself as a policy for dealing with skyrocketing autism rates. Do not tell me that autism is “just how some people are” and should not be addressed, because I will respond that schizophrenia and depression—other disorders with medical underpinnings—are also “just how some people are,” and give lie to how misguided neurodiversity is. People with autism should be accepted. Autism itself can, and should, be fought.

We can learn to live with just about anything. City dwellers learn to live with constant light and noise pollution. Our world may be on the verge of learning to live with catastrophic climate change. This ability to adapt does not mean that we should fail to recognize and correct our own mistakes.

My son had autism. My son still has ADHD. One day my son will be neurotypical. Treating his disorder biomedically has made this progress possible.

Full stop.

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’.”

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.

And Then, Martin Does the Rejecting

Posted on by findingmykid
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You know, from last week’s post, that Martin has started participating in mainstream gymnastics. His class meets Thursday afternoons at our local JCC.

I also mentioned, in that post, that Martin attends a three-hour special-needs program at the JCC on Saturday afternoons. The Saturday-afternoon affair is a mixed bag: The kids swim, cook, do arts and crafts, and play outside, and those in attendance have a wide variety of challenges, from autism to cognitive impairment to hyperactivity. Martin has participated for almost two years. He’s always seemed to enjoy himself.

Last month, on a Saturday, two days after his first Thursday gymnastics class, Martin said he didn’t want to go to his JCC program that afternoon. At first, I thought he didn’t want to go because Adrian and I were both home and the weather was nice. I was planting my organic greens while Martin played on his swing set and Adrian worked. Martin had seen me prepping vegetables and fish to grill, and he might have thought that he would miss a cookout if he left. (The food was for family dinner that evening.) “Don’t be silly,” I told Martin when he said he wanted to stay home. “You love going to the JCC.” Still he persisted. Still I thought that he was just reluctant to leave a lazy Saturday in our yard, and that he would be eager when we arrived at the JCC.

He wasn’t. He walked in with me, and even hugged his friend Will hello. Then he grabbed my waist and begged me to take him home. I try not to give in to Martin’s activity whims; if I did, we’d be forever paying for lessons that he doesn’t use, for classes that he wants one week and not the next. So I tried to leave the classroom. Martin, in very un-Martin-like fashion (these days, anyway), started to cry. I asked the instructor whether anything had happened to make Martin uncomfortable. No, she replied, not that she could recall. I thought back to the previous Saturday. Adrian had picked up Martin and brought home a cheerful boy. No apparent issues. Now Martin kept crying. Eventually I did leave, without him. I snuck back and peeked in his group’s room. He was sitting on the floor, playing with a toy intended for a baby, pouting. He looked as miserable as mysophobia in a dumpster.

I phoned Adrian from the car. Was it possible Martin had a bad experience at the JCC? Had someone hurt him? Was I wrong to leave him there?

No, Adrian opined. We’ve never seen any indication of that. Martin is always in a good mood when we pick him up. He’s never appeared frightened or abashed. Plus, there are so many staff members present that he’s never alone with anyone. He just didn’t feel like going. Stop worrying

Indeed. When we returned three hours later, Martin admitted he’d had a good time.

The next Saturday, two days after his second gymnastics class, Martin again said he didn’t want to go to the JCC. In this encore, the tears started earlier, before we left home, and Martin was more insistent still. He did not want to go to his special-needs program. Adrian and I got Martin calmed down, and asked why he wanted to stay home. The conversation went something like this:

Adrian:           Martin, listen. We know you don’t want to go. Can you tell us why? Did something happen at the JCC?

Martin:           Because I don’t like it there. I don’t want to go.

Me:                But, Sweetie, you’ve always loved going to the JCC. You have fun there.

Martin:           I want to go to the gymnastics class on Thursday.

Adrian:           You go to both. You don’t have to pick. You go on Saturday afternoon, and then again for gymnastics class on Thursday.

Martin:           I just want to go to gymnastics class. I don’t want to go on Saturday anymore.

Me:                Why not?

Martin:           Because I don’t like it.

You get the idea. It was a frustrating conversation. Nevertheless, two themes emerged: First, Martin had no problem with the JCC. To the contrary, he was anxious to go back on Thursday to his gymnastics class. For that, I was relieved. At least I could stop worrying that he’d had some negative experience or been accosted by a staff member or any of the other random horrors that float incessantly through my motherly head. Second, since he started the gymnastics class with typical kids, for whatever reason he did not want to return to the special-needs program.

As it was the second week in a row, and Martin was more determined than we’d ever seen him about anything, we agreed to let him stay home. Even after we affixed conditions to the deal—no iPad, no snacking before dinner—Martin accepted.

Adrian and I speculated what might be prompting the change of heart. Now that Martin was participating in a “typical” class, was he starting to understand the difference between mainstream and “adapted”? Did he want to identify himself more with the typically developing kids? Was he rejecting his special-needs peers? Or having experienced gymnastics, was he no longer so into the less-challenging fun program? Was he just spending too much time at the JCC?

By coincidence, the first Saturday that we let Martin stay home, Jenny was observing the JCC’s Saturday-afternoon fun program. Jenny is the facilitator who takes Martin to Tuesday-afternoon Kids’ Klub at our church, and also is a graduate student in special education, and the observation was an assignment for her course work. Later, after her observation, I asked Jenny for her thoughts on Martin’s wanting to stay home. Jenny said it might be a combination of factors. She noticed that the kids with more challenges in the Saturday-afternoon program kept the instructors busy, and so Martin and some of his higher-functioning (ugh! that expression again!) peers were left to their own devices. She also said that some of the kids had behaviors that might be agitating Martin, and that the room got busier and nosier than Martin is used to otherwise.

Jenny’s opinion, based on her experience at the JCC special-needs program and our church’s mainstream program: half and half. Half, the myriad special needs and activities on Saturday afternoon are not what Martin is into right now. Half, Martin wants to be more like the typically developing kids in the church club and the JCC’s gymnastics class.

My response? Half and half. Half, I am sorry if Martin has started rejecting the special-needs community of which he’s been a part for years. I want my son to be happy to play with any child, whatever his or her challenges. Half, I am bubbly-giddy if, in fact, Martin sees himself as typical and the mainstream kids as his peers.

Praise Him in the Morning

Posted on by findingmykid
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I have to tell you about church this weekend. I’ve got to tell you about church this weekend.

The children were scheduled to sing “Praise Him in the Morning” during the service. When the children sing, so does Martin. He attends the church’s Tuesday-afternoon Kids’ Klub each week, where the children practice with their music minister. This weekend was already the third or fourth time Martin has sang at church since December. Even in that short space of time, I’ve seen the level of assistance he needs decrease rapidly. Initially, he stood in the nave with the other children but really didn’t sing, and sort of wandered. Now—

Actually, let me start with something else. The children were asked to arrive 20 minutes before the service, for a final rehearsal. We were late and made it to the narthex only five minutes before the service. I told Martin to hurry and shooed him toward the rehearsal room downstairs. He turned back and started to ask me to come. Just at that moment, one of the women who helps with Sunday school was passing. She said, “Oh, are you going to rehearse? Come on. You can come with me.” Martin hesitated only a second before heading downstairs with her. Until recently, Martin never would have done that. He would have insisted that I come, or staged a meltdown if I didn’t.

I entered the sanctuary with my father, who was visiting for the weekend, and chose two seats on the aisle near the back.* Soon the children, about 20 in total, appeared and headed together down the aisle. Martin left the group and came to me with a happy “Mommy!”

“Hi, Sweetie,” I said. “Do you want to sit with me, or with the other children?”

I don’t think Martin had realized the children would be sitting together near the pulpit (they do that only on “performance” Sundays), because when he saw them filling the front pews, he scampered up the aisle to join them. By then most spaces were filled, and I feared Martin might get frustrated and return to me. He didn’t. He bopped around a little and finally made space for himself amongst the older boys.

The service began. I watched Martin, fearful that, out of my reach, he might do something disruptive. Not my Martin! I can’t say he paid any attention to the service—let’s reiterate: he’s six—but he did sit quietly. Only once did he start talking, whereupon the fifth-grader next to him promptly and effectively shushed him. And once he quasi-snuggled the boy to his other side. (We’re having some issues right now with respecting personal space.) That boy was patient, and the incident passed. Through the opening hymn, the prayer, the Kyrie, the first reading, the responsive psalm, the second reading, and the Gospel, Martin behaved.

Finally the children shuffled onto the chancel. First they sat and heard a three-minute lesson from the director of the mission committee. Then they stood to sing. Martin knocked it out of the park. Not only did he stand almost still; for at least 80% of “Praise Him in the Morning,” he sang along.

(Yes, I recorded the performance on my iPhone. Yes, even before the sermon ended, I had sent the file to relatives and friends.)

After their big performance, the children sang a short goodbye song and headed off to Sunday school. There was a substitute teacher, which in the past might have worried Martin. Not this week. He participated fine. When I reclaimed him for the Eucharist, he was wearing his art project around his neck, a medallion on which he’d written, “I am a child of God.”

After the Eucharist, the pastor asked everyone to sit down, because he had many announcements and business matters to review. By then Martin was antsy, so I let him take his snacks from my purse and walk to the gymnasium, where coffee hour is held. That exercise makes me nervous, because coffee hour invariably includes an open table offering goodies not allowed on Martin’s restricted diet. Furthermore, the pastor really did have a lot to talk about, so ten minutes or more passed before I left the sanctuary and found Martin in the gymnasium.

He was sitting at a small table for children, eating a bowl of fruit. We had this conversation:

“Mommy! I went to the food and got myself a bowl and filled it with fruit.”

“You did? All by yourself?”

“Yes, and then I got this spoon and this napkin, and now I’m eating. I did it all by myself.”

“Martin, that’s terrific. And where are the snacks that we brought from home?”

“Here, look! I made my almond bar into a ball and put it with the fruit!”

I was absolutely tickled by Martin’s independence, and by his wise choice: With the food was a cream-filled chocolate cake, which Martin had walked right by to serve himself fresh fruit. I decided to celebrate by offering him a little orange juice. “Sure!” he exclaimed, and then asked if he could pour it by himself, which he did, without spilling a drop.

Who is this boy? Who is this kid who sits with the other children instead of with me, who sings with the chorus, who makes good choices and takes initiative to serve himself? He’s Mr. Independence.

He capped the performance Sunday evening, when we went out to eat. At the particular restaurant, Martin can eat the burger (grass-fed beef, with no additives) or the fish cooked in olive oil. He refused to reveal his choice until the waitress came. After I ordered, Martin asked me, “Is it my turn?” Then he looked directly at the waitress and said, “Um, I would like to order a burger, please.” I was about to begin reciting the additional directions when Martin stopped me and said, by himself, “No bread, no bun, please.” The waitress asked, “Would you like cheese?” Martin replied, “No. I can’t have that.” My job was limited to whispering, to the waitress, “Could you substitute steamed broccoli for the French fries?” And we were done.

I don’t use this term much: It was one heck of an FUA day.

*Informative note: In the suburban church we attend (new since we moved), the younger kids don’t stay for the sermon. After the Gospel reading and a short children’s lesson with the pastor, they proceed to the basement for Sunday school and don’t return until the Eucharist. Until last December, I didn’t stay for the sermon, either. I accompanied Martin to Sunday school, to help him participate and make sure he didn’t monopolize attention. One Sunday in December, the Sunday-school teacher, whose own son is recovered from autism, told me, “You don’t need to be down here anymore. We’re fine.” I expressed skepticism, and she said, “Really. Go upstairs. Sit near the back. I’ll send one of the older kids up if we need you.” I made it about ten minutes before I snuck back down and peeked in the door. They were fine. Martin was playing. No chaos.

Since that Sunday, I walk downstairs with Martin if he wants me to—which happens less and less—and then I return to the sermon. Still, I choose a seat on an aisle, near the back, in case the teacher needs me. Once, an older child came upstairs to ask me whether Martin could eat the gummy snacks they were having. He couldn’t, so I whipped a GAPS-compatible brownie out of my purse. That’s the only time I’ve been needed.