ASD Recovery Recipe: Anything Pasta

So I’ve discovered that I can make a decent pasta meal out of anything “vegetable” in my refrigerator. Like, virtually anything.

Last night I planned to make white bean skordalia. By the time I discovered that I forgot to advance-soak the cannellini beans, I had only minutes to devise another dinner. I surveyed the kitchen and assembled these ingredients:

->Carrots, with their green tops. I always cook the carrot greens. Once when I was checking out, the supermarket cashier casually snapped off the carrot greens and tossed them in a garbage bin. I promptly commenced a lengthy oration on the benefits of carrot greens.

->Red onions.

->Garlic.

->Celery.

->Toasted onion salt. With Martin’s current low-salicylate diet limiting spices so much, I’ve been trying to get creative with salt.

->Pine nuts. I avoid the pine nuts from China. I’m not anti-China, but I am concerned with shortcomings in China’s food-safety schema.

->Green lentil pasta.

I prepped the carrots (greens and all) and celery in a vinegar bath, then cut them into pieces and put them in my food processor. October 13, 2011, I wrote a post titled, “Kitchen News: An Update on the Hunt for a Food Processor With Glass Bowl,” which (based on total unique views) is the most popular post ever to grace this blog. Five-and-a-half years later, I am still without a glass food processor. I processed the carrots and celery almost to a paste. Then I chopped the onions and garlic roughly and added them to the food processor.

While the pasta was cooking, I heated a generous amount of oil and fried the finely minced vegetables. When they were almost done, I added onion salt and a scoop of pine nuts.

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Finally I drenched the cooked pasta in cold water to prevent mushiness and added it to the veggie pan.

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The resulting dinner was pasta coated in lovely crunchy-garlicky bits. Martin said, “Oh yes, this is delicious!” and Adrian ate every last bit from the pan.

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Must remember—“night in a pinch” will henceforth be known as “garlic pasta dinner.”

Bound To

The autism recovery path is so jagged—so many ups and downs—that the key to longevity is managing my own emotions. Well, one key. Other keys are financial stability, a supportive co-parent, close friends, a cooperative school district, available therapies, access to organic foods, home ownership or other opportunity to create a cleaner living space, and let’s face it, we’re talking about innumerable keys. But certainly managing my own emotions is one. I struggle not to pin my mental state, any given day, to Martin’s transitory condition. Martin has good days and bad days, good weeks and bad weeks, good months and bad months. I don’t mind the elation when Martin feels well and performs well. Giving into despair when he doesn’t is a recipe for driving myself crazy.

That being said, it never ceases to bewilder me when Martin looks near-typical one day and strongly symptomatic the text, without any obvious intervening factor.

Two Fridays ago Martin earned his yellow belt in taekwondo. He didn’t perform exactly as well as the other eight-year-olds being tested but nonetheless paid attention and made the correct moves and legitimately earned the belt. We went out for sushi to celebrate, and Martin went to bed early. He spent that Saturday in New York City with his uncle Eddie. By all reports they enjoyed themselves and Martin’s behavior was stellar. Saturday evening we had dinner at home; Eddie (who eats meat, occasionally) and Martin had organic roast turkey, Brussels sprouts, and brown rice pilaf with vegetables and sprouted pecans. Martin, exhausted from his day, again went to sleep early and without incident. That night he slept 11-and-a-half hours.

Nothing changed.

Nothing, except that Sunday morning Martin was antsy in church. He rocked around during children’s time and, I learned later, disrupted Sunday school with incessant talking. That afternoon he became crabby. Sunday night, alternating between anxiety and cracking himself up, he had trouble falling asleep. I dropped off close to 11:00 pm. He was still awake.

Monday’s school report was—less favorable than one might hope.

Tuesday’s report was—disastrous. After school, Martin looked goofy and distracted at taekwondo class. At church Kids’ Klub, in front of all the children, he called the teacher a “liar” when she misspoke and said “tomorrow” instead of “next week.”

By Wednesday evening, following a trombone lesson that made me ask myself why I’m still paying for trombone lessons, Martin was running back and forth. Remember that? Run from sofa to stairs, stop, turn, space out, then jump and pa-dap-BUMP, run back to sofa, stop, turn, space out, then jump and pa-dap-BUMP, repeat. Classic repetitive behavior. Haven’t seen it in months. Months. Before Wednesday, I would have put “running back and forth” into the “so far gone” bucket.

There were other behaviors too, both at home and at school, that for Martin’s privacy I’d rather not document here.

On Thursday, Martin started to reemerge from the mystery fog. Thursday’s note from school said, “Martin had a better day. :-)” Friday, which was a parent-teacher conference day with no school, Martin had a successful play date with two friends and focused well at taekwondo. Saturday afternoon he worked three hours on a Lego project with Adrian, without complaint. Sunday he hosted a home play date for three friends.

The Friday-Sunday update is based on reports from Adrian and Samara. I was away for the weekend, with six girlfriends from high school. Some of them read this blog. Thanks, ladies. You sustain me.

So why did Martin, without any apparent external stimuli, tank for several days? I don’t know.

And why did Martin’s Wednesday ROOS, combined with a Friday parent-teacher conference about behaviors that are causing fellow students to alienate him, send me into a tailspin, albeit a short-lived tailspin? That I do know, and I’d like to find a way to change the answer.

 

Conversation, Y’all

In my law practice, we work with an attorney from Texas who likes to throw “y’all” into sentences, even in email. She writes, “Think y’all need to flesh out that argument,” or, “I’m going to that hearing, and y’all should too.” As a literary device, her “y’all” is most effective as a lead-in or closer, like, “Y’all, we cannot take that case,” or, “Think that one through, y’all.” The concluding “y’all” is grandiose. When this attorney ends a sentence with a comma and “y’all,” I think, Did you get that? Did you pay attention? Because she was talking to you.

Being New York born and raised, I’d sound silly if I tossed y’all around the way my co-counsel does. So when I do choose to conclude a statement, especially a mono-word declaration, with a y’all, let’s agree that it’s extra-grandiose.

Conversation. Conversation, y’all.

Finally, we’ve got conversation. The kind of conversation that involves listening and responding to the partner.

Our family employs a housekeeper who comes weekday mornings, usually arriving just before Martin and I leave to catch his school bus. One day she was surprised to find Martin playing in the family room, and me away from home. (I had an errand to run, and by previous arrangement would be returning to retrieve Martin and drop him at school; Adrian was in his home office, working.) Given that Martin has always shied away from speaking with her—until recently, he buried his head in the sofa pillows whenever the housekeeper addressed him—she was even more surprised to have this conversation with him, subsequently relayed to me:

HK: “Martin! Why are you at home? Don’t you have to go to school today?”

Martin: “I am going. My mom is coming home to take me.”

HK: “If you want, I can drive you over now.”

Martin: “No, it isn’t allowed for anyone different to drop me off.”

Martin and I are spending the coming summer in Nicaragua. (Remember this post? More details later.) One morning, over breakfast, Martin asked, “How many days will we be in Nicaragua?”, and I replied, “Sixty days. All of July and August.”

Eight hours later, in the car, without additional prompting, the following conversation ensued:

Martin: “July and August each have 31 days.”

Me: “That’s true.”

Martin: “But you said we will be in Nicaragua only 60 days?”

Me: “Good point. What is 31 plus 31?”

Martin: “Sixty-two.”

Me: “So we will be gone 62 days.”

Martin: “Mommy, is Nicaragua going to be the longest trip you’ve ever taken?”

Me: “No, once I was in India for several months. I was studying there.”

Martin: “Will Nicaragua be the longest trip I’ve ever taken?”

Me: “Yes.”

These are conversations, y’all. They involve give-and-take. They require response to what the conversation partner has said.

I’m excited, of course. And there’s a caveat, of course. Most of Martin’s conversations still revolve around what fascinates him: right now, bridges, geography, and names. So while he’s made progress thinking dynamically enough to add to a conversation, he still needs to reduce his rigidity and apply that dynamism to a variety of topics.

Y’all.

Expectations

We went skiing again, two weeks ago. I feel so incredibly fortunate to have had two separate ski weeks this year. This time it wasn’t Park City, but Beaver Creek. Adrian has skied Beaver Creek before; for me and Martin, this time was the first.

When we’re at Park City, Martin takes his lessons through the National Ability Center, which you know I love. The instructors are trained and experienced in giving adaptive lessons, they got Martin skiing for the first time, and I’ve seen them perform miracles when it comes to getting more severely affected children and teens sliding down the mountain.

At Beaver Creek, we booked a full week of half-day lessons through the in-house adaptive program. The Beaver Creek adaptive lessons were discounted from standard one-on-one lessons but still quite expensive.

When Martin was doing skating lessons in the hope—ahem, in my hope—that he could play hockey, his instructor was not trained in working with special-needs kids. He was patient, maybe too patient, and no expert at motivating Martin. This may be my own unnecessary fear, but at some point I was unsure whether the instructor even enjoyed working with Martin enough to push him. Martin may not have got as much from those skating lessons as he should have. I’ve had the same feeling about the music lessons—first his piano lessons and now his trombone lessons, both with “regular” instructors. Sometimes those who don’t work regularly with impaired children seem to have pretty low expectations of what they can accomplish.

So I was uneasy Monday morning when I discovered that Martin’s instructor, Steve—Martin was assigned the same guy for the whole week—was not a full-time adaptive instructor and instead taught mostly standard lessons. Steve had called me the night before, to go over the notes in Martin’s file, and asked questions about what to expect. Nevertheless, I feared he might not know how to handle Martin’s shortcomings like attention, coordination, or frustration tolerance. I worried whether he would value Martin’s strengths, like curiosity, and perseverance when motivated.

Those fears were relieved as soon as I retrieved Martin after Monday’s lesson. Martin was a bundle of enthusiasm as he whispered dramatically about the secret path they’d skied through trees and then demonstrated how they howled like wolves in the woods. Steve talked about Martin as if he were any kid: His parallel stance was improving and he wasn’t wedging to slow anymore, but his hockey stop wasn’t 100%, either. They’d crossed several hillsides to work on keeping skis together. When allowed to ski independently Martin was still straight-lining instead of turning. He’s eight, the instructor said. That’s what eight-year-olds do.

I have a long history of bristling when I hear “all kids do that.” On this occasion, it didn’t bother me. To the contrary, by Wednesday, after three lessons, I was convinced that Martin was improving faster with Steve than with any previous instructor, and if Steve was bothered by Martin’s shortcomings, he wasn’t dwelling on them. On Friday, during his final lesson, Martin skied his first black diamond.

The Steve situation, i.e., Martin doing better with a standard instructor than an adaptive instructor, engenders where we are now. Martin has improved again since our post-Christmas dip. At times he seems close to typical. And that raises a whole new crop of problems. Back when I couldn’t get Martin to respond to a question and trembled at the constant meltdowns, taking too long to get ready for taekwondo class would not have bothered me, at least not much. When he couldn’t hold a pencil, or when we still worried about cognitive impairment, I probably would have delighted that he was doing math homework, not fretted that he was dallying.

The expectations of Martin have become higher, and sometimes he rises to the occasion, as he did with Steve. On the other hand, I find more reasons to be frustrated when these expectations aren’t met. Which, when you think about it, is unreasonable indeed.

Here we sit, neither typical nor impaired enough to—to make a big deal out of it? I’m friendly with a taekwondo mother whose son has attention issues. Her son’s issues are slight, and always have been. She’s so skilled at rolling with the punches: accounting for her son’s tardiness, giving him “good attention” reminders, supporting him socially, monitoring his after-school activities to make sure they are meeting his needs. I’m not so good at all that, yet. I’ve spent so many years putting Martin’s shoes on for him and helping him eat that I haven’t developed the skill set to empower his independence.

Time to raise other expectations. Of me.

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Adrian and Martin, heading up the mountain.

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Martin, enjoying a fountain view, after a long day of skiing.

I’m the Issue

Back in December, I found myself volunteering at Martin’s class Chanukah party. I read The Runaway Latkes to the class, served latkes—I’d brought Martin’s from home—, and helped Martin’s desk cluster play Chanukah bingo. I also facilitated a dreidl game. Martin played dreidl without incident, but another boy cried or complained every time he had to surrender chips, and finally refused to play any longer, instead yelling, “I’m a sore loser! I’m a sore loser!” I was reminded of when the behaviorist told me, “Martin is not the behavior problem in his classroom.” Overall, the morning went smoothly for Martin, and I felt optimistic.

While I and the other parent volunteers were packing to leave, the teacher called the kids to the rug for another story time. The kids were fussing and settling, and the teacher said above the murmur, “Children! This book is scary! You might want to snuggle up with a good friend!” Everyone squealed and began linking arms into groups of two or three. Tristan immediately grabbed Spencer. Those are two boys I know. Tristan’s mom was born in the same country as Adrian. We have done play dates with Spencer (on a parent-organized, not child-initiated, basis). Martin gravitated to them also, and sat himself very close to Tristan. A second later, Tristan pushed Martin away, and even from the classroom doorway, I heard Martin ask, “Why not? Why can’t I be?” I don’t know exactly what Tristan said to Martin, but given that it followed “. . . snuggle up with a good friend,” I can guess. When I left, Martin was sitting alone, two feet from Tristan and Spencer, listening as the teacher began the scary story.

I worry so much about Martin’s self-esteem. It’s probably what I worry about the most, even more than his attention deficit and immaturity. I wonder how many times per day his self-esteem endures hits like Tristan pushing him away and saying he’s not a friend. The ten or so kids other than Martin at his morning bus stop are all girls, except a boy named Nathan. One of the mothers is pregnant with twins and just found out she’s having a boy and a girl. When she told the bus-stop crowd, Nathan’s mom said, “Oh my gosh, Nathan, are you happy? Finally another boy around the street!” She said this while Martin was standing next to her. Perhaps she confused social challenges with hearing, understanding, inferring.

Seeing the way the world treats Martin has caused me to do some hard reflecting, again, on the way I treat Martin, and how I might also be injuring his self-esteem. Multiple times each day, I become frustrated with Martin for behaviors that are likely outside his control. On any given morning, I might say the following:

-“Martin, why did you spill all the juice? Weren’t you being careful? This is expensive juice.”

-“Martin, I told you to finish eating while I got dressed. You haven’t eaten even one single bite!”

-“Martin, why can’t you just put your shoes on? Feet. Shoes. It isn’t hard.”

-“Martin, we are going to miss the bus! Listen! Pay attention!”

-“Well, that’s it. We’re late. Again.”

Or take this very afternoon, a Monday. I’m going to be honest here, entirely honest, even if doing so brings me to tears while I’m writing: I have been frustrated with Martin since the minute he returned from school. Everything was wrong: Last night I slept only three hours, because I was working on a memo. This afternoon I ended up doing more office tasks than I planned, and my lunch date was more than half an hour late, so I still had to make dinner once Martin was at home. Let me add—Martin had a fantastic weekend. He chatted conversationally, he had no meltdowns, he focused at taekwondo class. So I expected a fantastic today. I knew today would rock. And then it didn’t. Martin cried and complained his way through 40 minutes of homework (worksheets that should have taken no more than 10 minutes), and he still wasn’t done, not even close, when I called him to get ready for taekwondo. I reserved 20 minutes to get us out the door. Twenty minutes to put on a taekwondo uniform and sneakers. And yet we were late. Like junk expands to fill a basement, Martin’s needs expand to overflow whatever time he’s allotted.

My role in all this? I’ve spent the entire afternoon being unreasonable. I’ve told Martin to stop complaining, I’ve grown frustrated, I’ve blamed him for our lateness. I’ve told him to act like an eight-year-old instead of a baby. Once or twice I’ve raised my voice. Constantly I’ve thought, “I would like a glass of wine,” and responded to myself, “A glass of wine will not solve anything,” and then argued with myself, “I think it would.”

My attitude, this afternoon and many mornings, is problematic for two reasons. First, it is unfair unfair to Martin. It’s not that Martin “isn’t being careful”—it’s that his ADHD and lingering coordination issues make him clumsy and distracted. It’s not that Martin “isn’t hurrying”—he lacks the ability to focus. It’s not that Martin is “ignoring me”—listening and paying attention go to the very heart of his disorder. To be sure, some of his conduct may be behavioral. But most of it is not, and it upsets him to be reminded of his shortcomings.

Second, my attitude pretends like I’m not the issue.

If Martin is spilling juice, I am the issue. The juice should be in a safer spot, and in a spill-proof cup.

If Martin isn’t finishing breakfast while I’m getting dressed, I am the issue. I need to get dressed before Martin eats so that I can supervise him.

If we are not getting out of the house on time, I am the issue. If 20 minutes is insufficient time to prepare, then somehow I need (1) to find more time and (2) to organize so that I have nothing to do except shepherd Martin’s preparation. One might argue that Martin needs to be developing more independence; clearly, however, the “independent Martin” strategy is failing at this time. Maybe I can leave one, and only one, task for solo performance: teeth brushing, or bag packing, or sneaker tying. For now, I need to “scaffold” massively (think “build extrastructure”) and withdraw support as Martin’s attending improves.

The truth is—and I think most biomed parents will agree with this—it is very frustrating to spend almost every waking moment working toward recovery and still get hit with waves of perseveration. Still never get out of the house on time. Still wonder why the child never listens. Still endure moments of hopelessness.

But that truth doesn’t excuse me from acting like the grown-up in this relationship.

Epilogue

I wrote this post yesterday, Monday. When Adrian arrived home, I said, “It’s been an afternoon. Will you pour me a glass of white wine?” He noted that the only white wine in the house was a bottle of questionable quality that the pool company had dropped off before Christmas. I told him to proceed. I drank two glasses. I woke at 3:30 am with a headache. I took ibuprofen and went back to sleep, propped on pillows, then managed to oversleep until 6:00 am.

Despite being rushed, I worked swiftly and organized the morning well. Martin cooperated more than yesterday. I was so proud of us when we were ready for the school bus three minutes early.

After Martin departed, I realized I’d forgotten his after-breakfast supplements.

He arrived home with a report saying he’d needed an unusual amount of prompting during the school day, and had refused to participate in Valentine’s activities. Now he’s in taekwondo again, and instead of participating, he’s jumping.

Still, the grown-up in the relationship feels okay. Must be a sleep thing.

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Martin, at Chicago’s Adler Planetarium. He’s not the issue.

On Food and Genetics, and Judgment

Time to elaborate again on a comment response I made recently.

In response to my post about Martin’s golden week, I received this comment from a reader:

We are not on a biomed path as our son’s extremely restrictive food choices preclude this. Also his autism is visible throughout our family tree and heritable traits probably can’t be eliminated entirely by an altered diet. However our son’s behaviour varies considerably depending on who is looking after him and how secure he feels. Not all sides are helpful . . . while low-sal may well be helping don’t ignore the effect of his environment out of hand. There’s a lovely book called Uniquely Human about this sort of thing [that] might be worth a look. Thanks for writing—we are on a path much more to do with movement than food due to our family’s ASD presentation but we have the same burden of analysis and choices as you seem to! Bonne Chance

This was my response:

Thanks for reading! A few thoughts on your comment: I agree that environment is also relevant, and we pay a great deal of attention to environment and behavioral assists. But seldom (in my experience, never) do they yield an immediate effect; a substitute aide does not make a great day, or week—though a new aide certainly can change the course of the year. In terms of the biomed path, I don’t know of any child whose autism was corrected entirely by an altered diet. Diet is only the foundation of the healing path. Moving along that path requires supplementation, methylation assistance, detoxification, etc., specific to the child.

Genetic and inheritable traits also play a great role in my son’s condition. I would be naïve to think otherwise. Both my brothers have immune disorders, and psychological/psychiatric conditions (which I now would call health conditions) are endemic in my family. That does not mean my son’s autism cannot be lessened, if not resolved, through biomed. Epigenetics, neuroplasticity, and all that I know about the science of healing suggest otherwise.

In terms of your son having extremely restrictive food choices—well, that brings me to a paradox. In my experience working with biomed families, children who restrict their food choices are usually the biggest beneficiaries of biomed, once it gets going. The food aversions, which often have underlying digestive causes, tend to disappear once the irritants are removed from the diet. I would encourage you to give it a try!

But even if it’s not right for your family, that’s okay too. It sounds like you are doing a lot for your son in any event, and I hope it will get him where he needs to be. Whatever approach we take, we are all in this together.

These are the three points I’d like to discuss further:

  1. Picky eating is a reason to pursue biomed and dietary changes, not a reason to discount them.
  2. Genetics don’t always get to write a child’s future, at least not every aspect of the future.
  3. If picky eating or genetics are keeping you from pursuing biomed and/or dietary changes, that’s okay.

As to point 1—“There is no way I could do a gluten-free or dairy-free diet, because my son will eat only cheese tortellini, breaded chicken nuggets, and pretzels.” “I tried a special diet once, and she didn’t eat for three days. Literally. Finally I gave in because she would pass out otherwise.” I hear these statements frequently when other special-needs parents find out that we do biomed. I also hear their corollary, the failure-to-thrive argument: “My son is so skinny and small for his age, even though he eats a ton. I have to give him milkshakes constantly just to keep his weight up.”

Years ago, I attended a presentation by Dr. Arthur Krigsman. (Yes, I know Dr. Krigsman is controversial. At this point, I find that many doctors doing research and providing non-pharmaceutical medical treatment to children with autism are called quacks. I’ve had to get past that and start making my own decisions.) Although biomed parents (as far as I could tell) filled much of the audience, Dr. Krigsman was speaking as part of a panel discussion aimed primarily at physicians, and therefore much of what he said went over my head. I think I understood him to say that many children on the spectrum exhibit lesions and inflammation throughout the digestive tract, including in the esophagus and stomach. Dr. Krigsman calls this condition “autistic enterocolitis.” These lesions, like so much of what affects our children, originate from unbalanced immune response to normal gastrointestinal action. Picky eating, or food aversions, might be a sign of pain from such digestive troubles: Kids express their hurt by avoiding the foods that exacerbate that hurt. In such a scenario, a kid who is not eating, or is severely restricting his own diet, needs biomed. Like, really, really needs biomed, or some form of medical intervention to begin healing the digestive tract.

Speaking from my own experience, when Martin was young, before we started biomed, he “postured”: He would bend forward with his stomach tight and his fists clenched at his side. He also slept with “elevator butt.” (I stole that term from one of my law school classmates, who used to scratch the base of my cat’s tail, then yell “elevator butt!” when the kitty straightened only her back legs.) Martin frequently slept with his face smashed into the mattress and his butt in the air, as if to relieve pressure on his gut. Both the posturing and the elevator butt ceased within a few months of dietary changes. Whether he actually had enterocolitis, or just some lesser form of irritation, I don’t know. But he was in pain, and a restricted diet relieved that pain.

During Dr. Krigsman’s presentation, I couldn’t help but think of “Jonas,” a boy I know with undiagnosed behavioral issues that resemble seizure-related oppositional defiant disorder. At the time, Jonas would eat nothing but processed yogurt drinks or green shakes. I searched for a way to raise the issue of entrocolitis with his mother, a single woman constantly overwhelmed with managing Jonas’s behaviors and shuttling him to various therapies, including eating therapy. I never found the right moment, or non-threatening way, to bring it up. I consider that a shortcoming.

I don’t believe that “autistic enterocolitis” is the only reason a kid on the spectrum might avoid foods. Martin’s friend Bobby, who is on a GFCFSF diet, limits himself even further because of taste and texture issues. He will not eat soft or chewy foods. Martin himself would be happy to repeat his two or three favorite foods every meal. I consider that a form of perseverative behavior. Again, these are issues best addressed (in my world view) through biomedical intervention, to resolve what’s causing the aversions or perseveration—although I don’t discount the complimentary role of behavioral therapy, such as RDI.

As to the child who allegedly needs milkshakes to put on weight, if a boy eats and eats but cannot gain weight or grow taller, plainly he has a health problem that is not being addressed. His body is not processing the food’s nutrition adequately, which means he probably isn’t getting the foods that his body can process. Which brings me to dietary changes . . . .

As to point 2—I have heard from parents who say they don’t have any reason to bother with biomed because genetic mutations are to blame for their child’s autism. I get that. I really do. Once you discover what havoc genes can wreck, it can feel almost pointless to try altering the course. Even without the genetic component, it can feel almost pointless. I’ve been at this six years, and we aren’t “there” yet, wherever the heck “there” is. But consider two factors. First, genetics are often a predisposition, not a path certain. Genetics might set the stage, but environmental factors often raise the curtain. You know my favorite environmental villains: processed foods, glyphosate, pesticides, C-sections, antibiotics, vaccines (gulp! I said it again), pollution. Carrying the silly set-the-stage analogy further—if environmental factors raise the curtain, then altering the environmental factors can change lower it again. Even if, for example, a vaccine activates an MTHFR mutation, interventions to restore the immune system can calm the mutation.

As I wrote in response to the blog comment above, I recognize the role Martin’s genetics played in his development of autism. Without going into too much detail (even though FindingMyKid is written anonymously, I feel icky about compromising privacy), my family has genetic gifts—for example, we are “book smart” and breeze through standardized exams, and we are not prone to obesity—and shortcomings. Both my brothers have immune disorders. The elder suffers from a wide range of food and environmental allergies, plus eczema and chronic bronchitis. The younger has environmental allergies. Long before I produced Martin, I myself fell victim to depression, a disease also prevalent in my husband’s family. There’s addiction on both sides of the family tree. So when it comes to immune and related disorders, genetics were not in Martin’s favor. Genetic testing has confirmed the existence of mutations that make him susceptible to autism.

As I understand the history, decades ago we might have been advised against vaccinating Martin at all, based on immune disorder in the immediate family. Let’s add that Martin’s vaccinations followed Pitocin, loss of heart rate during labor, an unplanned C-section, antibiotics in the NICU, and plenty of immune insults I don’t need to repeat again.

The way that I look at it, Martin’s genetic predisposition to immune disorder made him vulnerable to the effects of environmental factors, and now makes our path to recovery more arduous. But it is no reason to abandon him to (perceived) fate.

Then there’s the matter of epigenetics. According to this helpful webpage, epigenetics is “the study of potentially heritable changes in gene expression (active versus inactive genes) that does not involve changes to the underlying DNA sequence—a change in phenotype without a change in genotype—which in turn affects how cells read the genes.” That means that environmental circumstances can cause genes to be silenced or expressed over time. We can influence which genes express themselves, and how. I’d like to seize that power, to whatever extent I manage.

As to point 3—I’ve said this from time to time, and it bears repeating: You don’t need to approach autism biomedically to be my friend. Doesn’t that sound ridiculous? Because this is a blog about biomedical recovery from autism, and because I unabashedly favor biomed, I worry that I must come off as an intolerant person. Since FindingMyKid is written anonymously, I have to ask you to take my word for this: My blog personality and my live personality are different. By now, a large percentage of my acquaintance comprises families affected by autism. Half of those families, I estimate, are pursuing biomedical recovery. The others are not. It’s like having friends who don’t love the New York Rangers, or even hockey in general. I prattle about the Rangers, they listen kindly, and then we find connection in whatever petty topics non-hockey people enjoy. When it comes to friends who have children on the spectrum but don’t pursue biomed, I answer questions (when asked) about what we are up to, I ask what they are up to, and we find connection in the stuff we both know, like sleepless nights, IEP meetings, adaptive sports.

I had the advantage of implementing dietary changes when Martin was just two years old, when he was more malleable. Maybe you don’t want to change your child’s diet because he’s picky, or underweight, or you’re skeptical about biomed. Or maybe dietary changes are too much to manage with a large family, or small budget, or unsupportive co-parent. Maybe knowing your child’s genetic make-up has convinced you that biomed interventions would be fruitless. Maybe you are making satisfactory progress with behavioral therapies. That is totally fine.

Judgment does not become us.

Opposite Direction

We had that one golden week, immediately after I switched Martin to low-salicylate diet.

The next week wasn’t so good.

This week isn’t so good.

You know what I mean by “not so good”: lots of silliness, little concentration, some meltdowns.

We are still doing low-sal.

I can’t identify any environmental changes since golden week.

What is different is that we are, again, increasing the anti-microbials in Martin’s protocol, trying to reach what his doctor considers full dose.

Martin’s system is sensitive and reactive. I begin to doubt whether we will ever make it to full dose.

I’m going to try an experiment, this week: I’m going to reference Martin’s protocol sheets (I print them at home and keep them all, of course) from our ski week and from the golden week. Whatever dose of each antimicrobial Martin had those weeks, he shall have this week.

I’m writing this at Martin’s taekwondo class. I’m watching him focus on nothing. I’m looking at a kid with half the attention span he had two weeks ago.

And so for a little while, I don’t care whether we are working to reach full dose of antimicrobials.

I just want another golden week.