Monthly Archives: June 2016

Recognized, and Happy for It

Posted on by findingmykid
2

My law school roommate lives an hour or two away. As the crow flies, her home is probably 40 miles or so from mine, but New York City lies between us, with all the convoluted traffic conjuring the metropolis requires. She and I meet occasionally for lunch, in Manhattan, but it’s rare that we bring our families together.

This Saturday she and her husband came over with their three kids, a girl about Martin’s age and two older boys. We barbecued and swam. The kids played. They stayed about five hours.

That evening, I received this email from my erstwhile roommate:

It has been a few years since I last saw Martin (or should I still call him Tin Tin?), so I didn’t know what to expect. I didn’t know if he would still be the little boy I remember from a few years back or if he would be completely different. Well, he is still the cute and sweet little boy I remember but he has also grown into a wonderful young man, so friendly, courteous, and fun! If I did not know from your blog posts that he has struggled with language and communication, I would not have guessed it. Martin was such a gracious host to my kids (who are not the most friendly outgoing type) and was actively engaging them. (He was asking Nathaniel if he preferred to be called “Nathaniel” or “Nate.” He was also calling to Mieko to come swim.) He was so expressive and easy-going and super nice to be around!

I know that today was just one day in his life and there must be other days when things are not so great. I can’t help but to think of all those sleepless nights, all the cooking and food shopping, traveling to doctors and therapists, and the worries and heartaches you endured. But I think you have soooo much to be proud of!!! Your unwavering faith in your child and your strength to guide him, even in the face of uncertainty, have made a world of difference.

Congratulations on achieving an important milestone! I am sure that the next chapter in his life will be an exciting and rewarding experience with new friends and new achievements.

The “important milestone” to which she refers is Martin’s upcoming switch from self-contained special education to general education.

I’m grateful and fortunate to report that I often receive compliments about Martin. This wasn’t even the first very cool email I’ve received from my law-school roommate.

The email quoted above, however, is different, and blog-worthy. In it, a parent of typically developing kids recognizes not only Martin’s growth but also the struggle it has taken to achieve that growth. This was so meaningful to me. Biomed parents know what happens behind the scenes. Biomed parents understand why I had to give up my former career, and they are sure I’ve cleaned poop smears, endured consecutive days without sleep, and snuck into bathrooms to cry. Parents of neurotypical kids, on the other hand, no matter how supportive, tend to overlook what autism recovery actually entails.

Before our guests left yesterday, my former roommate also said that I looked healthy. She said I seemed less exhausted and less burdened than I have since Martin was diagnosed.

When I asked later whether I could reproduce her email here, with the identifying information changed, she replied, “Sure, go ahead and use it on your blog. And you can remove any identifying information such as how beautiful and charming I am.”

Nice try. I will spite her by reporting to my entire (vast, vast) readership that my law-school roommate is beautiful and charming.

Which I suspect you already guessed.

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Martin enjoying homemade ice cream on our back deck, with the children of my law-school roommate.

He Doesn’t Seem to Know

Posted on by findingmykid
16

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.

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Martin, in orange, with friends.

Del Sur V: Manifesto

Posted on by findingmykid
6

“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 IV: That Doesn’t Sound So Bad

Posted on by findingmykid
Reply

Adrian’s two sisters, each a mother herself, don’t know about Martin’s autism, because Adrian refuses to tell them. Adrian’s official position is that, given the discrimination that still exists against disabilities and difference in his country of origin (where my in-laws reside), he would rather not see Martin “branded.” (Adrian’s parents and brother, Pancho, know the diagnosis. Adrian is closer to them.) I don’t begrudge Adrian’s choice. Even here in the States, we haven’t been public about Martin’s autism, or former autism.

On the other hand, the ignorance of my sisters-in-law leaves me in an awkward spot when Martin and I visit South America. For years I’ve avoided spending too much time for them, or covered when it came to Martin’s behavior, like I covered on our first day this visit. How many times can I say Martin is tired, jet-lagged, on a different schedule, shy, not feeling his best? Try me.

I decided this year I might be able to do something different. I approached Adrian with the idea of telling one sister—Claudia, who lives in the capital city we were visiting, and whom Adrian likes better—about Martin’s new diagnosis, ADHD. “Autism” strikes fear. “ADHD,” on the other hand, makes people wonder if your kid is taking the same drugs as their kids. Adrian agreed. ADHD doesn’t sound scary like autism sounds scary. We decided that I would share with Claudia “our challenges with ADHD.”

I didn’t really find a good opportunity to talk until our last evening in town, when Martin stayed with my mother-in-law while I went out to dinner with Pancho and Claudia. Then I fumbled, trying to come up with a way to initiate the conversation. An hour into dinner, Claudia said we should come down in July to go skiing during her children’s winter break.

“I wish we could! But Martin goes to school during the summer. Next year maybe we could come—he might change to a new school and have summers off.”

Awkward. Still, my comment moved the conversation in the desired direction. Claudia asked, “Martin is changing to a new school?”

“Yes,” I replied. “Right now he goes to a special school for kids with ADHD. But his attention has been getting better. We are thinking he can go to a regular school, with some extra help.”

If this fazed Claudia, she gave no hint. She said, “And then he would have the summer off? Do you think you could come here for the whole summer? We could do so much skiing!”

“I don’t know about the whole summer. We could probably come for a while,” I said. “It all depends on whether he gets to switch schools. We still have work to do on the attention span and all the issues that have to do with ADHD. We’re not sure he’s totally ready to leave his special school.”

Across from me, Pancho was nodding. He has known about Martin’s issues for years and could see what I was trying to do.

Claudia said, “This will be great. I’ll send you the schedule for my kids’ school vacation, so you’ll know when to come.”

Last try. I said, “I will have to let you know what happens. ADHD is very hard to accommodate properly in school. You can see Martin’s poor attention span.”

Claudia said, “I’ve heard it’s very common in America to change schools. Not here. My children will go to the same school until university, just like we did.”

There went my big talk with Claudia. At least, somewhere in her head is the notion that Martin has special challenges. I suppose that’s enough for now.

Final note: In the first paragraph of this post, I mentioned “the discrimination that still exists against disabilities and difference in [Adrian’s] county of origin.” I don’t know whether the culture of Adrian’s country of origin engenders unusual bias against disability. On my visits there, some 10 times and counting, I haven’t witnessed autism discrimination. But when it comes to Adrian’s own country of origin, I will let his opinion carry the day.