Awareness

A few months ago, Martin stuck part of a toy—the pink hand of a rubber action figure, perhaps; we reached no conclusive determination—in his left ear, which his MAPS(-ish) physician (“Dr. E”) discovered during a routine check-up. The next day we trooped over to an ENT specialist for removal. That doctor proposed placing a hollow cone with lighted tip into Martin’s ear, then reaching through the tip with a long tweezer sort of device to grab the “pink thing” (as Dr. E had dubbed the object). The procedure, if Martin held still, would be painless and last only a second or two.

Martin let the doctor peer into his ear but drew the line at the tweezer thingy plunging in there. Each time the doctor got close, Martin yelled, cried, struggled, and protested, hands clenched over his ear. The doctor was all patience, leaving the room while I calmed Martin and returning to try again, and again, for almost an hour. Finally the doctor suggested that we restrain Martin, and I agreed. I took Martin on my lap, crossed my legs over his, and held his wrists straightjacket-style. The nurse used her palms as a vice to steady Martin’s head. Martin screamed “NOOOOOO!” The doctor put the hollow cone in place and deftly, immediately, extracted the pink thing. He hadn’t lied: Once we had Martin still, the procedure took less than three seconds.

Martin stopped screaming immediately. His body relaxed. He studied the pink thing now in the doctor’s hand. Then he said, “That didn’t hurt at all. I guess it was just my anxiety making me scared for no reason.”

What kid is this? I asked myself. Admitting he’d been wrong? Musing on the role his anxiety played? Holy self-awareness.

That was in September. Since then:

>He asked me if I could send something to school for him to chew on instead of his pencil eraser, because he feels like he needs to chew but doesn’t want to keep ruining pencils. (I rummaged through a kitchen junk-drawer and found a silicon pencil-topper.)

>When I asked him why he was jumping in the living room one afternoon—jumping and hand-flapping are rare behaviors nowadays—he replied, “I have some extra energy that I want to get out so I can stand still when I go to taekwondo.”

>While he still won’t admit to being tired, ever, he will make comments like, “I really don’t think I should be up this late,” or, “Maybe I don’t need to read before bed tonight.”

He even said to me, before Christmas, “Mommy, do you remember when I used to be real shy and have trouble talking to people? That’s getting better. Now I can talk to people.”

In the seven years since he was diagnosed, Adrian and I have never told Martin that he has, or had, autism. I guess maybe we’re going to call his spectrum disorder “shyness.” I can live with that, at least for now.

So we’re getting a lot more self-awareness. With self-awareness, on the other hand, comes awareness of the challenges that still distinguish Martin from his peers. He asked to reduce his services at school (physical, occupational, and speech therapy, plus resource room) because he dislikes being pulled so often from the classroom. Then he acknowledged, “I guess I have to keep going to OT because my handwriting still isn’t as good as the other kids’.” He wants to join the school band next year, playing either trombone or percussion. He asked, “Mommy, what if next year the band teacher kicks me out because I can’t concentrate?”

I’m very thankful that Martin is suffering less anxiety these days and has better emotional control. The Friday before Christmas was belt testing at taekwondo. Most of Martin’s friends (as always, I use “friends” loosely) from his green-belt class—the kids with whom he achieved green belt together in September—were awarded blue belts. Although he has attended more practices than any of those friends, Martin was not eligible to test for blue belt, because he’s had trouble mastering the new forms and doesn’t have the third stripe on his green belt yet. Adrian took Martin to taekwondo the next afternoon, and I warned him that Martin might become upset or even have a meltdown when he saw his friends with their new blue belts. (The Saturday class is combined orange, green, and blue belts.) But he didn’t. According to Adrian, Martin became upset when he realized I’d forgotten to pack his green belt (way to go, me!), calmed down as soon as the dojang lent him a belt for the day, and never said a word about missing the blue-belt test.

It was September when Dr. E spotted the pink thing in Martin’s ear and sent us to the ENT specialist. In November we had another appointment with Dr. E. That morning, Martin said, “Dr. E won’t find any pink thing in my ear today!” When Dr. E went to look in his ear, Martin said, “Dr. E, you won’t find any pink thing in my ear today!” So I couldn’t believe my ears when Dr. E said he saw a pink object in Martin’s ear. Plainly, Martin thought he was being funny and had shoved something in his ear for Dr. E to find. Back to the ENT specialist we went. This time the object proved more difficult to dislodge, and Martin had to hold himself still while the doctor threaded a noisy vacuum tube into the ear canal. Martin did beautifully. Not a peep during the 20-to-30 seconds the doctor needed to extract what appeared to be a chunk of pencil eraser.

Martin gave me various stories about how the eraser entered his ear, ranging from “no idea” to “I had my head resting sideways on my desk while other students were throwing erasers around.”

Increased self-awareness—yes. Increased maturity—not so much.

The Facts of Life

If you’re my age (sorry!) and grew up in the States, you probably know the tune to these lyrics:

You take the good, you take the bad

You take them both and there you have

The facts of life, the facts of life.

 There’s a time you got to go and show

You’re growin’ now you know about

The facts of life, the facts of life.

When the world never seems

To be livin’ up to your dreams

And suddenly you’re finding out

The facts of life are all about you.

How long have you been reading this blog? If it’s a while, then you’ve experienced the good and the bad. You know that, over six years, Martin has moved from virtually no functional language or eye contact to a kid whose social awkwardness is primarily the inability to shut up. Early on, he was removed from a twelve-student, two-instructor preschool class because he wasn’t up to the task. Now he’s in a 22-student, one-teacher mainstream classroom, albeit with an aide. You also know that the path has been beset with obstacles: frustration, setbacks, inexplicable ROOS.

After we switched to a low-salicylate diet, Martin soared. Every day last week, we received a “best ever”-type report from school. His meltdowns reduced by 90%, I estimate. Though he continued perseverating/obsessing about New York City landmarks and trains (not unusual for kids with spectrum challenges), he was able to snap out of it when requested. Over the weekend, we went skiing with friends. Martin played with their typically developing, seven-year-old son, and his ski instructors referred to working with him as “a joy.”

. . . Which brings us to yesterday, Wednesday. No stellar report came from school. The across-the-board 5’s from his Friday report gave way to a crop of more-usual 2’s and 3’s. Martin came off the bus happy but talking nonsense (“Blurb the dinosaur is on the bus and he might eat us! Look out, it’s a birdjay!”). He spent his trombone lesson dancing about and lying on the floor, challenging even his patient instructor. Then he conducted a 90-minute tantrum based on my refusal to give him an iPad until his math homework was done. (Once he decided to stop crying and do the math ditto, he completed it in approximately 45 seconds. Forty-five tear-filled seconds.) He woke during the night, for three hours. This morning his behaviorist reported that he seemed “off” and “someplace else,” that he was acting goofy, that his fingers were in his nose, or in his pants.

PANDAS flare? I don’t think of Martin as a PANDAS kid, but—. Parasite activity? The full moon was last week, not this week. Detoxing? Increasing MC-Bar-1™ too quickly? Mold exposure? Dietary infraction? Mast cell party? I’ve also been unfocused and “off” this week. Adrian says he has, too. After a terrible report on Martin’s day, his behaviorist followed up with this text: “That said, I’ve been bombarded with phone calls this week. Everyone off.” So who the hell knows?

I texted back: “On a positive note, we have seen a real decrease in meltdowns. I hope that is carrying over to school.”

She replied: “No meltdowns reported or documented.”

I said: “I’m going to hang onto the positive, in that case.”

You take the good, you take the bad

You take them both and there you have

The facts of life, the facts of life.

He Doesn’t Seem to Know

Back to the topic of school.

We’ve been hoping to transfer Martin from his self-contained special-education school to a general-education classroom with an aide. Our local zoned school, at Martin’s grade level, had 26-to-28 kids per class, which is too many, so we looked at private schools. We found two church schools we thought would be good fits. Each school asked Martin to visit, for an entire day, without an aide. Each visit, Martin was at his worst; fighting his Lyme disease has been a rough ride. Combine “Martin is having a bad day” with “Martin is making a full-day visit to a general-ed classroom with no assistance.” The result was no private school placement for Martin.

At the same time, Adrian and I became increasingly convinced that the time has come for Martin to leave his current placement. Martin has started copying undesirable behaviors that he witnesses at school, like whining. Four other boys are leaving the class, including Martin’s two closest social peers. Martin has started self-advocating, telling us that he’d also like to go to a new school. He says he has too many teachers and that he’d like to be in a bigger class, and that he wishes he could go to a school close to home like his friends from play group do. Finally, Martin is finishing second grade, so these decisions concern possible third-grade placement. We’ve been told, by multiple sources, that the distance between second-grade curriculum and third-grade curriculum is the biggest jump in elementary school. Academics (except for reading comprehension and drawing inferences) are Martin’s strong point. Adrian and I worry that the longer we leave Martin in a slower-paced, modified learning environment, the less possible an eventual move to general education will become.

Just when it seemed that leaving Martin in his current school would be our only acceptable, available choice, two late entries arose. First, our district passed a new budget, part of which added additional sections to our zoned school. The class sizes dropped from 26-to-28 kids to 21 or 22 kids. Second, our local Catholic elementary school, which works closely with our district, invited Martin to visit—for a few hours, with an aide—and he happened to be doing well that day. Then the district offered Martin an IEP for general education, with a full-time, one-on-one teaching assistant, plus a consultant special-education teacher, plus resource room, plus regular visits from a behaviorist to the classroom, plus continued speech therapy and, if we wanted more services, occupational therapy, physical therapy, and counseling (services he has in his current placement). This panoply of benefits would be available to us at either our zoned school or the Catholic school.

The decision to pull Martin from his current placement was almost clear. Almost. We still faced this hesitation: Whatever our concerns with academics or behaviors, Martin is safe where he is now. His class is small, structured, and constantly supervised. He faces no playground bullying. He does not stand out because of his differences. His self-esteem is high, his confidence intact. The headmaster of one of the church schools that turned us down earlier this year is a former special-education administrator. Immediately after Martin’s full-day visit there, the headmaster kindly spent 20 minutes on the phone with me and Adrian. He enumerated the reasons why they wouldn’t accept Martin (including, apparently, the 11 times Martin stopped between the gymnasium and the classroom, because he wanted to examine a vase, to look at a photo of last year’s graduates, and so forth). The headmaster also said, in Martin’s favor, “I have to tell you that he made himself right at home. This is quite extraordinary—Martin doesn’t seem to perceive that he has any challenges at all.”

I’d like to keep it that way: that Martin doesn’t perceive that he has challenges. With continued hard work and a little luck, we just might be able to lose the ADHD diagnosis before Martin wonders too much about being different. If we toss him into a classroom of typically developing kids, how much of Martin’s own perception of himself will evolve?

Well, we’re about to find out. Last week, Adrian and I accepted the district’s proposed IEP, placing Martin into general education with an aide, in our zoned school, with one change in plans: At our request, Martin will repeat second grade. He’s changing schools, so the other kids won’t realize that he’s repeating. I hope that repeating second grade will give Martin a chance to adjust to the faster pace of general education before he is called upon to master new material.

Martin’s going to spread his wings. Here’s hoping he can fly.

IMG_3295

Martin, in orange, with friends.

Del Sur V: Manifesto

“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.

Del Sur, Interrumpido: Día de las Madres

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

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.