One Strike, Almost a Second Strike, and a Continuation

We had the talk with Martin.

Or at least we attempted the talk.

I’m talking about the talk described in my last post.

That talk. The one in which we discuss with Martin how he really is different from other kids.

When Adrian and I met with Martin’s psychologist, she didn’t advocate for revealing Martin’s diagnosis (“ADHD with social-pragmatic language delay”). Instead, the said the better approach might be to talk with Martin in terms of what he’s good at (say, memorizing facts, or learning geography), what he’s pretty good at (say, math), and what still gives him trouble (say, paying attention, or knowing what people mean when they interact). Then we could point out how everyone has a third category: Everyone has trouble here and there.

Adrian and I, strategizing, decided to raise the topic when we went out to dinner Sunday evening. That was my idea. Martin gets nervous when we ask to speak with him at home, because he thinks he’s in trouble. We eat Sunday dinner in a restaurant nearly every week, Martin feels comfortable in that setting, and we make him talk with us anyway, in order to practice manners and to reduce time looking at an iPad or iPhone screen, which is what he’d prefer to be doing. Sunday afternoon, I made paper charts with three columns:

  1. “Things I’m not so good at.”
  2. “Things I’m pretty good at.”
  3. “Things I’m very good at.”

There was a chart for each of us. I thought we could take the focus off Martin by discussing, first, my and Adrian’s weaknesses. After we ordered, I distributed the charts, presenting them as a “fun family activity.” Into column 1, on my chart, I put music, not being anxious, being on time, and paying attention. Into column 2, I put talking to friends, meeting new people, sports, and cooking. Into column 3, I put math, taking written tests, and writing. (Feel free to dispute whether “writing” belonged in my “very good” column.) Adrian admitted that he stinks at soccer, cooking, and being patient, said that he’s pretty good at speaking English (not his native language) and singing, and claimed to be very good at reading and being on time. I struggled to make out most of what Adrian wrote, so I grabbed his chart and added “writing legibly” to the “not so good” column.

Martin went straight for column 3, “very good at”: taekwondo (debatable), skiing (getting there), drums (still figuring out), and spelling (no doubt). In column 2, he included reading (I agree, if we mean straight-up reading, and not reading comprehension) and being patient. Then he stopped, before getting to column 1, “not so good at.” He asked me what he’s not so good at. I replied based directly on something he’d previously told me. “Remember how you told me other kids have better handwriting? So maybe something you’re not that good at is coordination.” “What’s ‘coordination’?” “Coordination is being able to write neatly, or move without bumping into things, and stuff like that. Daddy also doesn’t have much coordination.” “How do you spell ‘coordination’?” “What do you think?” “C-O-O-R-D-I-N-A-T-I-O-N.” (Because, spelling.) He wrote “coordination,” then added “basketball.”

I thanked Adrian and Martin for filling out their charts and began the soliloquy I’d rehearsed, about how everyone has skills that come easy and tasks that make them struggle. I completed less than a sentence before Martin interrupted me to ask, “Is anyone going to see these lists?” I said no, the lists were just for our family to see. Martin flipped his chart face-down and said, “I think we should put these away in case a waiter sees.” I gathered the charts and tucked them into my purse, then resumed speaking. Martin interrupted again, “I think maybe the waiters can hear you.” I promised to speak more quietly. He said, “I don’t want to talk about this.”

Adrian spoke up. “I think maybe Martin would rather have this conversation at home. Is that right, Martin?”

“Yes. At home.”

Strike one.

We got home late (by nine-year-old standards). I did Martin’s supplement routine and got him into bed. Adrian joined, and we restarted the discussion. As soon as I got to the part about everyone having struggles, Martin declared, with finality, “I’m not good at coordination,” then tried to change the subject. I, ever tenacious, suggested other struggles, again from his own prior statements, like his eyes wandering from the page or understanding what peers mean when they speak. Martin said, “I don’t want to talk about this.” I tried to convince him to have the conversation, that discussing strengths and weaknesses helps us understand ourselves. He rolled over and buried his face in a pillow.

It looked like we were headed for strike two, so I threw a Hail Mary. (Apologies for switching sports in my metaphors. I was going to say that I swung blindly, but that’s hardly a way to avoid a strike.) I said, “Do you remember when you said that you’re not a normal kid? Well, no one is a normal kid. There’s no such thing as a normal kid. Every kid has strengths and weaknesses.”

Martin turned his head enough to look at me from the pillow. “No one is normal?” he asked.

“Nope, no one. Even if you can’t see other kids’ weaknesses, they still have them.”

Martin shoved his face back into the pillow, but I could see him nodding in agreement. Good enough. Adrian and I said our goodnights and left.

This is destined to be an ongoing conversation, we decided. We must continue encouraging Martin to discuss his differences and how they affect him. I’m also questioning the wisdom of not revealing his diagnosis. In my head, I’m pursuing a conversation with Martin that opens this way: “Martin, have you ever heard of ADD? It’s a condition that affects a person’s ability to concentrate and pay attention. It’s not the person’s fault. If a person has ADD, her or she can treat the condition and make it better. You have ADD. It’s not your fault. You take all these pills to help make the ADD better.” I’m not sure where that will go, and I have yet to run the idea by Adrian.

The deep, meaningful conversation I hoped to be describing in this post hasn’t happened. So, alas, I need to end this post the same way as the last:

Stay tuned.

Time to Tell

In my last post, I wrote this:

[Martin] 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.”

By the way, 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.

This week, Martin followed up, in bed, during our “little chat” (which has become a nightly ritual). He said, “I need help with being shy again.” I asked what he meant, since he’s been doing so well talking to people. He replied, “I’m not doing it right. They don’t answer back.” I asked, “Do you mean how kids sometimes ignore you?” I’ve seen that happen, at school or taekwondo. Martin, in his eagerness, calls out, “Hi, Abby!” or, “Hi, Caleb!” and waves awkwardly as the other child pretends not to hear or makes a face and looks away. Kids can be despicable. Martin replied, “I said thank you to the waiter and he didn’t say ‘You’re welcome’ or anything. I need someone to help me do it right.” So in this instance Martin appeared to be talking about when he issues a comment without making sure he has the recipient’s attention. Most likely he had his face buried in an iPhone or the menu when he said thank you, and the waiter failed to realize he’d been spoken to.

Our little chat about shyness came on the heels of Martin declaring, the previous day, “I’m not a normal kid!” When pressed, he said that his eyes wander. I asked if he meant how he can have trouble looking people in the eyes when they speak. Martin’s eye contact during speech, for what it’s worth, is much improved. Eye contact no longer seems to make him uncomfortable; these days, instead of avoiding eye contact, he just seems to forget to look at his conversation partner. Martin said, “No, like when I’m trying to read. I want to look at the words but my eyes wander away.” Ah. An attention issue.

I relayed both conversations to Adrian. Then I asked him whether we want to reconsider the decision not to tell Martin he has a diagnosis. Together, we decided that the time has come to tell Martin that, indeed, something makes him different from other kids. We reason:

  1. His current diagnosis is ADHD with social/pragmatic language delay. Right or wrong, people find “ADHD” less scary than “autism” (in case Martin starts talking about his diagnosis).
  2. Previously, hearing that he has a disability might have been disheartening. Now, by contrast, we can point out that talking, fitting in, and acting like the other kids are getting easier—Martin has said as much, himself—and will continue to improve.
  3. His self-esteem needs a boost. He sees the discrepancies now, sees himself on the fringe. He needs to know that he’s not a bad kid; he has a body invader called ADHD that we are working on evicting.

We’ve got an appointment tomorrow morning with Martin’s psychologist, for her advice on how to tell Martin, which we hope to do as soon as this weekend. Right now the conversation looms large. On the other hand, a tiny part of me thinks Martin will respond with something like, “Yeah. I already know that.”

Stay tuned.

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.

Double the Population, Triple the Population, Nowhere the Resources

Two months ago I posted the testimony of my friend Victoria, who was appearing before the Minnesota legislature in support of adding autism as a qualifying condition for medical cannabis. Victoria stated that cannabis saved her son Julian’s life. I said I agreed with her assessment. Cannabis likely did save Julian’s life. In the year before he started using medical cannabis, Julian had shuffled in and out of the hospital, including several extended stays during which he had to be restrained. Julian was in so much pain that he repeatedly concussed himself with his own fists.

Last month I spotted an article suggesting that Julian’s situation is not uncommon enough. These paragraphs interested me the most:

Nationally, the number of people with an autism diagnosis who were seen in hospital ERs nearly doubled from 81,628 in 2009 to 159,517 five years later, according to the latest available data from the federal Agency for Healthcare Research and Quality. The number admitted also soared, from 13,903 in 2009 to 26,811 in 2014.

That same year, California’s state health planning and development department recorded acute-care hospital stays of at least a month for 60 cases of patients with an autism diagnosis. The longest were 211 and 333 days.

The problem parallels the issue known as psychiatric boarding, which has been an increasing concern in recent years for a range of mental illnesses. Both trace to the shortcomings of deinstitutionalization, the national movement that aimed to close large public facilities and provide care through community settings. But the resources to support that dwindled long ago, and then came the Great Recession of 2008, when local, state and federal budget woes forced sharp cuts in developmental and mental health services.

“As more children with autism are identified, and as the population is growing larger and older, we see a lot more mental health needs in children and adolescents with autism,” explained Aaron Nayfack, a developmental pediatrician at Sutter Health’s Palo Alto Medical Foundation in California who has researched the rise in lengthy hospitalizations. “And we have nowhere near the resources in most communities to take care of these children in home settings.”

The first quoted paragraph suggests a steep increase, from 2009 to 2014, in both ER visits and admissions among persons with autism. The second paragraph notes how long some of those 2014 admissions were. The third paragraph suggests that autism hospital admissions, like psychiatric boarding, originate in “deinstitutionalization, the national movement that aimed to close large public facilities and provide care through community settings.” Read closely, though. Autism admissions might (I express no opinion) originate in deinstitutionalization, but nothing in the article establishes that deinstitutionalization could account for a near-doubling of autism-related ER visits and admissions from 2009 through 2014.

I am saying “autism-related” on an assumption. The article discusses ER visits and admissions among “people with an autism diagnosis.” Given that autism is a medical condition, that the hospital staff involved would have specifically noted that the patients had autism, that a high percentage of the visits resulted in hospital admissions, and that the article is about care for autism, I think we would be hard-pressed to argue that the hospital visits were not “autism-related.”

Instead, according to the article, resources for care in community settings dwindled before the Great Recession in 2008, which itself predates the 2009 initial statistics. So while persons with autism might have started being seen at and admitted to hospitals because of deinstitutionalization, something else is driving the increase in such cases from 2009 through 2014.

That “something else” is the rapid increase in autism rates.

The article lends support to an argument I’ve made before, namely, that increasing rates of autism cannot be explained by better diagnosing, because rates are increasing across the spectrum. Better diagnosing might (no opinion expressed) account for more cases at the mild end of the spectrum, the kids formerly known as “quirky” or “antisocial.” But we’re also faced with a wave of severely affected kids: the self-injurious who are unable to verbalize their pain (which, so long as we fail to treat autism medically, continues to manifest). This wave, and the attendant phenomena like hospital admissions and extended stays, cannot be dismissed as better diagnosing. These kids would never have been undiagnosed.

Victoria’s son Julian is one such kid. Over the past three years—to be precise, in the three years since Julian jumped from a balcony and broke his back and both his legs—Victoria and her husband have made tremendous strides in restoring Julian’s health through diet, supplementation, and homeopathy. Julian has progressed from small and underweight to tall and substantial, his allergy shiners have faded, and he has begun to verbalize. Medical cannabis stopped the self-injury and lashing out at others. His path suggests he is done with extended hospital stays.

The article I quoted does not deny the increasing autism rates, or pin them on better diagnosing. The developmental pediatrician is quoted: “As more children with autism are identified, and as the population is growing larger and older . . . .” On the other hand, the article does not highlight the increasing rates, and it does not end the way I would prefer, which would be something like: “We have an emergency on our hands,” explained Aaron Nayfack, a developmental pediatrician. “Not only do we have nowhere near the resources in most communities to take care of these children in home settings, we have more and more children being affected, including severely affected by autism. We need the resources to care for them. And we need the resources and the research to stop this epidemic. Now.”

The A-ha Moment: Part III

An old friend texted me, asking a favor. The two-year-old son of one of his law partners was just diagnosed with autism. Would I consider having lunch with the man, share with him our experiences?

No problem, I responded. The school/services/therapy side, or the biomed side?

Friend texted: “I told him about the dietary approach you took. Don’t know if they’re ready for that level of discipline but would be good for him to hear.”

“Dietary approach.” Love it.

I texted: “Over the years I’ve learned to approach the newbies gently, and tell them only what they’re ready to hear (plus maybe a little more).”

I have these types of meetings from time to time: friend-or-a-friend arrangements during which, depending on the direction the conversation takes, I tap, nudge, or shove the parents in the biomed direction. “Absolutely,” said Adrian, when I told him about the arranged lunch. It was one more opportunity to show our gratitude for Martin’s recovery thus far—that is, to imagine what our lives would be like today if we still had a son who postured because of gut pain, could not sleep unassisted, and neither acknowledged nor seemed to recognize his own parents.

Six years ago, I wrote about how my family got into biomed, in a series of three posts titled “The A-ha Moment.” Part I described our first realization that autism is medical and recovery may be possible. Part II told how a business contact of Adrian put us in touch with another contact whose wife, Annie, had recovered their son and was willing to talk to me. (A more precise description would be: “whose wife had recovered their son and was willing to spend a ton of time (seriously, an hour to start, and then hours more in follow-up) on the phone with me.”) Part III narrated—

Well, holy crap. In reviewing my blog in order to write this post, I’ve just realized that I never wrote “The A-ha Moment: Part III.” Me acabo dar cuenta de que soy una idiota. I thought I wrote it. I was sure I wrote it! Evidently, I never did. (In my defense, six years ago, I slept very little.) This situation must be remedied. I’ve rummaged through my home office and found the notes of the conversation back in January 2011 on which I intended to base Part III. Without further ado, I present The A-ha Moment: Part III:

The background. “You’ve got to talk to Betty [a pseudonym],” said my then-sister-in-law after Martin was diagnosed. “Her son has autism, and he’s doing amazing.”

I’d met Betty once, ten years earlier at my brother and sister-in-law’s house, when she and her husband brought over their two kids, a girl of about four and a toddler boy. I remembered the boy only vaguely. He’d run around and got into everything, like toddlers do.

I asked my sister-in-law to put me in touch with Betty. We scheduled a phone call, which took place the day after Annie had told me about recovering her son biomedically.

The conversation. I opened the Betty call by explaining that our son was undergoing formal diagnosis but that it was clear that he had autism, and that although we already had him in Early Intervention with ample therapy, we thought there was more we could do, medically.

“Oh, I’m probably not the best one to ask about that side of things,” Betty said. “We didn’t go in for the diet-and-supplementation stuff.”

No?

Betty explained that they had started biomed with their son—which, subsequently, I realized was kind of amazing, because this would have been years earlier, and everything was still pretty cutting-edge even when we started with Martin—but had given up quickly. “The diet was impossible. It just got in the way of all our family activities,” Betty said. Nevertheless, Betty assured me that, despite doing only traditional therapies, their son, now eleven years old, was fine.

Really? Tell me more. I was under the impression that a biomedical approach was necessary to really make progress.

Nope, Betty said. Her son was in a mainstream classroom.

That’s great! How does he relate to the other kids?

He’s able to do the assignments, except when the students pair up or work in groups. He’s not able to work cooperatively, so they let him do those activities alone.

Does he have friends?

Not really. He has one friend. They do a lot together. He doesn’t have any other friends. But he doesn’t care, so why should I? In social situations, he tends to isolate himself. When we’re going to be around other people, we let him bring a portable disc player and earphones to watch a movie.

He’s healthy? He sleeps and eats well?

Yes, he sleeps! No problem there. But his diet is terrible. He has food aversions. I have to send pretzels and potato chips for his school lunch every day, just to make sure he eats something. I feel like people think I’m a bad mother. He loves crunchy texture and salty flavor.

Sports?

No. No sports.

After-school activities?

Video games.

Readers, I’m sure you can imagine that by this point in the conversation I had decided that I did not like Betty’s version of “fine.” The picture she was so dire that I began to doubt my previous call with Annie, who told me about recovering her son. I thanked Betty for her time and insights. She concluded by reminding me that her son was fine and letting me know that my son would also be fine.

The follow-up. As soon as I hung up with Betty, I got back on the phone with Annie. Could she clarify? I asked. When she said her son was “recovered,” what did that mean? Was he quirky? A little bit off, in terms of social skills? Unwilling to eat regular foods, maybe? No, Annie answered. He’s recovered. He looks just like other kids. No one in his current school knows he ever had autism. He plays guitar in a kid-band with his friends. He likes sports.

I continued to press. There must be some difference? Annie seemed to think. Finally she said, “Sometimes when he’s playing basketball and it’s really noisy, he gets a little spacey and I feel like he could pay attention better.” That was it. That was what she came up with. The difference between her son and other children was that sometimes he got a little spacey on the basketball court.

The A-ha Moment, Part III: Behavioral therapy offers fine. Biomed offers recovered. We decided to aim for recovered.

Addendum. It’s not entirely correct to say I never wrote Part III. In a November 2011 post titled “Friendships,” I did reference what occurred in The A-ha Moment, Part III. I wrote: “Another parent once told me, about her eleven-year-old son on the spectrum, ‘He doesn’t have friends except for one. But if he doesn’t care, why should I?’” That came from Betty, about her son who was fine.

Back to 2017. Last week’s lunch with my old friend’s law partner, though peppered with discussion of special-needs preschools and CPSE meetings, steered decidedly in the biomed direction. The man asked science-y questions, which I did my best to answer, and listened to my many self-deprecating observations that began with, “I know this probably sounds a little crazy, and if ten years ago, I’d met today-me, I’d think I was crazy. But I’ve learned a lot about health, the immune system, and how seemingly psychiatric conditions can be tied to the gut . . . .”

Two afternoons later, at Martin’s social-skills playgroup, a mother new to the group overheard another mother and I talking, and asked, “What do you mean, ‘biomed’ and ‘neuroplasticity’? I’m not familiar with any of this.”

I paused, wondering whether I should proceed. Then I said, “This is probably going to sound crazy . . . .”

Chances

My approach to Martin’s food continues to evolve.

In the earliest days, I would say, Martin’s diet was one of restriction. No grains, dairy, soy, corn, refined sugar, starchy vegetables, or fruits other than pear and avocado. No colors or sweeteners, no packaged or prepared foods, nothing from a restaurant. My mindset was mired in what he could not eat, and I concocted elaborate replacements for “usual” foods. This was a time of homemade zucchini seed “French fries,” sunflour patties, and duck nuggets; as long as the dish didn’t have any no’s, and seemed vaguely like a familiar food, it was a yes.

As I learned more about Martin’s particular needs, we ventured into specialty diets: GAPS with its endless broths, the Specific Carbohydrate Diet, low-salicylate, which brought us more potatoes and less coconut oil.

At some point, food became easier when I focused on simplicity: fewer replacements and complicated recipes, more limited-ingredient masterpieces.

This summer in Nicaragua, I was able to confirm that fruit doesn’t have to be our enemy anymore—after fruit had been relegated to that role for years by Martin’s tendency to yeast overgrowth. Also, through trial and error, I brought back in some of the higher-salicylate items formerly removed.

Now, back in the States with access to an embarrassing range of organic options, my motto has become: “Every meal, a chance to heal.” Martin is still gluten-, dairy-, soy-, and refined-sugar free, and his food is mostly homemade and organic. But I’m focused less on how to replace what Martin can’t eat and more on how I can pack fat, protein, and nutrients onto his plate while still keeping the meals delicious.

For exemplar purposes, I photographed this morning’s breakfast preparations. These were the ingredients, as I prepared them—

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Fritter mixture (sweet potato, onion, garlic, carrot tops), pineapple, strawberries, orange, avocado, egg.

You see orange slices, strawberries, 1/4 avocado, one egg, and a bowl with shredded sweet potatoes and minced onion, garlic, and carrot greens. That’s a lot of vitamin content, plus the healthy fat of avocado and protein of egg. Tell me that you’re asking yourself what kind of lunatic arranges the prepared ingredients in a pattern on her cutting board? Only when I’m operating “for exemplar purposes.” Keep up. Next I whisked the egg in a glass with Himalayan pink salt and stirred it into the sweet potato bowl.

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Fritter mixture, now with egg. Ready to fry!

Then I juiced those orange slices in preparation for Martin’s smoothie. Because it so fibrous, orange is one of the few fruits I won’t add whole to a smoothie. I usually use coconut water as the base of Martin’s breakfast smoothie; this morning, I had oranges to use up and so substituted orange juice. I put the orange juice in the Vitamix with the avocado and strawberries. I add avocado to every smoothie, healthy fat that Martin doesn’t taste. (I’m also finding new ways to disguise spinach and kale.)

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Getting the pulp out of the oranges.

Finally I formed patties from the shredded-sweet-potato mixture and fried them in olive oil. Breakfast looked like this:

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Voilà! Crunchy sweet potato fritters with fruit smoothie. Breakfast is served.

That’s a common weekday breakfast. Here are some other examples:

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Berry smoothie with “egg muffin” (diced vegetables, spices, and egg baked in ramekin) and salted roast potatoes.

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Tropical smoothie with “egg muffin” (diced peppers, parsley, and spices with egg, baked in ramekin) and potatoes with carrot greens.

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Tropical smoothie and squash fritters, made with onions and red palm oil for rich color.

I still tend to put Martin’s meat serving—if he has one, on a given day—into his school lunch. Today, lunch was turkey meatballs, filled with peppers and leeks. For dessert, homemade meringues (egg whites, vanilla, arrowroot, maple sugar). For snack, a Lärabar.

Tonight was a slow-cooker dinner. Late morning, I diced whatever “autumn” vegetables were in my fridge, and added late-season tomatoes and herbs from my garden. That mixture went into the Instant Pot, together with red lentils, spices, and vegetable broth.

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The dinner ingredients. I had such fun laying out the breakfast ingredients for display that I figured I would continue the trend.

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Dinner into the Instant Pot to slow cook.

Of course, not every meal is a vegetable powerhouse. Convenience can play its role. Some mornings, breakfast is a smoothie plus “pizza,” i.e., peanut butter spread between Siete grain-free tortillas and fried in macadamia nut oil.

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Finally! A green smoothie. This one has spinach, cashew milk, coconut yogurt, peanut butter, and frozen banana.

Some evenings, dinner is brown-rice fusilli with “cheese” sauce, in this case served alongside Indian-spiced chickpea fries.

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This is like the ASD-recovery version of mac-‘n’-cheese with chicken fingers, I guess.

Adrian, who refuses to eat breakfast except on weekends, continues to get two Bento boxes of mostly raw food, and one container of lentils, to take to the office for lunch.

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A sample bento box for Adrian. In this one I packed salted avocado, grapes, peanuts, raw-milk cheddar, apple, hummus, and Mary’s Gone Crackers Thins.

Every meal is a chance to heal.

Now, if a child’s system is damaged and not properly absorbing nutrients, all the raw vegetables in the world won’t necessarily get the healing done; the trick is to find the proper food combinations. We are awaiting new test results to learn more about Martin’s gut today and whether we need to tweak his diet yet again.

And we press onward.

It’s Not my Fault This Issue Won’t Go Away. At Least, Not Only My Fault

Trigger warning: This post is about vaccines.

I start with a trigger warning because the post may affect you in either of two ways:

  1. You may believe your child was injured by one or more vaccines, and reading about the issue may evoke memories, regrets, guilt, even rage; or
  2. You may reject the idea that vaccine injury is widespread or connected to autism, and even reading the suggestion may cause anger and disillusionment with this blogger.

Better news: This post is not about whether vaccines are connected to autism. If you’re dying to know my opinion on that subject, click here.

This post is about perception of the vaccine issue and why, whatever the truth behind vaccine science, I think the tide will continue to turn against mandatory vaccination, at least until changes are made in drug approval, the liability scheme, and the way we discuss the whole matter.

“I Know Someone”

Let’s start with someone who likely falls within category 1, above—“You may believe your child was injured by one or more vaccines, and reading about the issue may evoke memories, regrets, guilt, even rage.” Earlier this year, in California for a doctor appointment, Martin and I decided to expend some energy at a trampoline park. We did not realize that we had happened upon a designated “special needs jump night.” The place was pretty empty, but apparently most of the kids who were there had some form of disability or sensory challenges.

Martin ran off to bounce. I sat on a bench with two other moms. They were discussing IEP’s and, soon, so was I. When one of the moms left, I continued chatting with the other. By then I knew that her four-year-old son was non-verbal and diagnosed ASD. She asked where we lived and what we were doing in California. I explained that my son had also been on the spectrum but now was getting better, and that we were in California to see the doctor who treats the medical aspects of my son’s condition.

That’s usually sufficient to end a conversation, or at least steer it in another direction. I find that ASD parents either reject biomed as impossible based on mainstream advice they’ve received, or else reject biomed because they are too overwhelmed even to consider dietary or lifestyle changes. Either way, they don’t jump to discuss. I thought this trampoline-place mom would fall into the second category; during the IEP portion of our conversation, she mentioned that she was a single parent, that her son’s father was entirely absent, and that she had trouble getting to IEP meetings and other school events. How could she want to add special diets and supplements to her agenda?

God bless her. I can’t fathom the strength needed to walk this path alone.

I was mistaken. She asked to hear more about what treatments we do, and about Martin’s diet. I tried to speak in gentle terms and be encouraging. As I was in the midst of saying that autism has an immune component, the mom interrupted me and blurted, “It was the shots, wasn’t it?”

I asked what she meant. She said, “Something happened to my boy. He got a bad fever after a shot and he wouldn’t stop crying. The doctor said it was normal, but my boy wasn’t the same after that. He didn’t talk anymore. And the doctor told me the shot didn’t hurt him, and that I had to keep giving him shots to stay in Medicaid, so I did, and I saw that he got worse every time.” With tears in her eyes, the woman looked at me and asked again, “It was the shots, wasn’t it?”

Readers, I was at a loss. I hadn’t said a word about vaccinations and did not expect the discussion to move in this direction. What could I say? From the few details the mom offered, it sounded like vaccine injury could be an issue—but no way would I share that suspicion with her. I felt like remorse and desperation had gathered themselves into human form and were sitting next to me.

The mom’s sudden response reminded me of a gym trainer I had two years ago. Training can involve a lot of chatting, and eventually we bumped into the topic of what I do for Martin, and his recovery process. “What do you think causes autism?” the trainer asked. I said genetics and environmental factors. He asked what environmental factors. I implicated unsafe food supply, overreliance on antibiotics, pesticides and pollution, disruption by electromagnetic fields, maybe a few others. The trainer asked, “What else?” I said Caesarian-section births weren’t doing us any favors. The trainer asked, “And what else?” I talked about sterile environments and lack of access to dirt and earth. The trainer asked, “And what else?” I relented and said, “Some people think vaccines are involved.” The trainer leaned close and whispered, “I know. I know all about it. My wife has a friend whose baby was injured. So my wife won’t let us vaccinate our kids.”

I know. I know all about it”—this came from a random 26-year-old suburban New York sports trainer who prides himself on “not reading too much.”

Why the vaccine debate won’t die, exhibit one: Too many people know someone they believe to be vaccine-injured.

“Nope. Forget it.”

On to someone who falls within category 2—“You may reject the idea that vaccine injury is widespread or connected to autism, and even reading the suggestion may cause anger and disillusionment with this blogger.”

This summer, I made a friend, an ex-pat North American already living a dozen years in Nicaragua. She knew about Martin’s challenges, at least his current challenges. (Think social awkwardness and emotional fragility, instead of screaming meltdowns and lack of functional language.) She knew that we follow a restrictive diet and have done various therapies. She did not know about the supplements, antimicrobials, enzymes, probiotics, mitochondrial support, homeopathy, neurofeedback, vision exercises, &c. Those details are reserved for the innermost circle of confidents. Still, I consider this ex-pat a reasonably close friend, and we speak openly with each other about the universe of matters not related to autism recovery.

One evening toward the end of summer, when Adrian already had returned to Nicaragua, he and I went out to dinner with this friend. The conversation was lively; Adrian is opinionated, and so is my friend. The talk turned to politics, and to subjects on which Adrian can see both sides of an issue versus subjects on which he sees no room for debate. (The dinner followed close upon a group of white nationalists parading clownishly around Charlottesville, which is I think how we arrived at the topic of “no room for debate.”) By way of intro, Adrian said something like, “You can debate a lot of things. How to stop global climate change, whether to pacify North Korea, late-term abortion, all the vaccinations—.”

Adrian mentioned vaccinations innocently, perhaps even Pollyannish-ly; his exposure to the topic comes mostly from his autism-obsessed wife, so he may just have been thinking, “Reasonable people can disagree on this one.” But upon the very mention of “all the vaccinations,” my friend exclaimed, “Nope! Not the anti-vaccination people. They are lunatics. [Expletive] lunatics.” No one had said anything about anti-vaccination. Adrian had suggested space for debate around the panoply of vaccinations currently recommended. My friend heard “vaccinations.” That sufficed to evoke immediate condemnation. No room, there, for debate.

Twenty years ago, one of my cats, Linsey, suffered a vaccine-induced fibrosarcoma. She developed a large tumor at the site of a rabies vaccination. I was a law student at the time. I paid for surgery to remove the tumor and then, having expended my savings, borrowed $5,000 from my brother Rudy and flew Linsey to Colorado State University in Fort Collins, where the Veterinary Teaching Hospital was one of the few institutions using electron-beam radiation therapy to prevent tumor return. (This was important because the Linsey’s tumor was adjacent to her lungs, so I didn’t want the radiation reaching beyond the tumor site.) After returning to Connecticut, where I was studying, I drove Linsey every few weeks to Angell Animal Medical Center in Boston for chemotherapy. Miraculously, Linsey survived this ordeal, only to succumb two-and-a-half years later to an unrelated carcinoma. Some cats have all the luck.

Throughout the entire course of these events, no one questioned that Linsey was vaccine-injured. The treating veterinarian, who first found the tumor, said immediately that it was vaccine-related: “I’ve seen a few of these, always at the site of injection.” I was asked to submit Linsey’s vaccination records to track the batch that had induced the tumor. Colorado State made her part of a study on treating these particular tumors. The doctor at Angell talked to me extensively about vaccine injury in cats and special precautions to take going forward. Five or six years after these treatments, long after Linsey had died, a researcher from Colorado State phoned me to track her outcome, for their records.

Of course, Linsey’s experience made me wary of vaccinating my cats. I asked a lot of questions, and veterinarians always took the time to discuss pros and cons with me, like whether exclusively indoor cats really need vaccines, the risks of vaccinating versus developing FeLV, or steps that had been taken to replace the adjuvants suspected in causing sarcomas like Linsey’s.

And when Martin came along, I tried to ask questions about vaccinating him, too. I attended presentations on vaccination, read books and articles. I formulated specific questions, like, “I looked up the contents of each brand of DTaP vaccine, and they all have at least 150 micrograms aluminum. One has more than 600 micrograms. I can’t locate any study indicating that those levels of aluminum injection are safe for a child of my son’s size. Have you seen any?”, or, “It’s hard to get statistics, but from what I have found, the rate of serious adverse reactions to the varicella vaccine might be higher than the chances of a serious reaction to the virus itself. Are we vaccinating in order to eliminate the virus in the general population, or are we seeking protection more particularized to my son?”

Martin’s pediatrician, to the extent she could, dismissed my questions without answer. Though she halfheartedly indulged my decision to do Martin’s vaccinations on a delayed schedule, she showed no interest in my reasoning or research. Instead, she served the usual banquet of platitudes: Vaccines are safe. Vaccine injury is a one-in-a-million occurrence. All theories linking vaccines to autism have been discredited. Until we started biomed, no one involved in Martin’s healthcare agreed to have a realistic conversation with me about vaccinations. A ten-minute conversation with my cat’s veterinarian over whether yearly rabies vaccines are worth the risk? No problem. Even a single disinterested, well-founded response to concerns about my own child? Wasn’t going to happen.

Why the vaccine debate won’t die, exhibit two: You’re not allowed to express a contrary opinion, or even a diversified opinion. You aren’t really allowed even to ask questions.

I Guess I Went to Law School for Some Reason.

In the United States, we have a (much-criticized, and sometimes justifiably so) system of tort law designed to shift resources among private parties in order to compensate victims of injury. If you are hurt—financially, physically, or otherwise—by a private party such as a corporation or a neighbor, you have a right to sue that party and ask to be “made whole.” Example: If your water heater explodes and you suffer burns, you can seek compensation from the company that sold the water heater, on the theory that the product never should have been put into commerce. Example: If your uncle drunkenly rams his car into your garage door, you can sue him for the cost of a new garage door.

In the late 1980s, vaccines were removed from this liability scheme. A law known as the National Childhood Vaccine Injury Act of 1986 established a National Vaccine Injury Compensation Program, or the “VICP.” (The citation is Pub. L. No. 99-660, 100 Stat. 3755 (1986), codified at 42 U.S.C. § 300aa-10 through -34.) Under the Act, the family of a vaccine-injured child no longer gets to proceed directly to a lawsuit (as would a person injured by, say, a pain medication or a statin). Instead, that family must file in the U.S. Court of Federal Claims, against the Secretary of the Department of Health and Human Services. Attorneys within the Office of Vaccine Litigation defend the Secretary.

After some 5,000 cases were filed under the Act seeking compensation for development of autism (this doesn’t surprise me) following vaccination, the Office of Special Masters within the VICP created an Omnibus Autism Proceeding, or “OAP.” The cases consolidated into the OAP ruled against the test-case families and held that vaccines cannot provoke the development of autism (nor does this surprise me).

A family dissatisfied by the outcome of a VICP proceeding may reject the determination and file thereafter in a federal court. In practice, a court is likely to accept a VICP determination of “no injury” as heavily persuasive, if not conclusive. Editorial note: I have no link to back up the foregoing statement about persuasiveness of VICP determinations in subsequent proceedings. The statement is based on my own years of legal practice in cases involving some form of prior adjudication, whether administrative or otherwise. Therefore, the possibility of litigating a court case to verdict and recovery barely exists. Moreover, as to the VICP itself, successful claims, as well as administrative costs of the program, are paid from a trust, which is funded not by vaccine manufacturers but by an excise tax for each dose sold of an included vaccine. Vaccine manufacturers are thereby insulated from just about any form of liability for injuries caused by their products.

Since the 1986 Act, the Centers for Disease Control has “recommended” ever-more vaccine doses. I use quotes around “recommended” because, in a growing number of states, failure to adhere to every recommendation precludes school attendance, military service, even some private-sector jobs. In the past five years, for example, California (with more than 12% of the nation’s population) eliminated personal-belief (including religious) exemptions from school vaccination requirements, joining West Virginia and Mississippi as states that don’t allow any non-medical exemptions. New York (with an additional 6% of the nation’s population) has been adding required vaccines for school, limiting the availability of medical exemptions, getting rid of personal-belief exemptions, and challenging religious exemptions.

The U.S. Department of Justice credits the VICP for virtual cessation of lawsuits against vaccine manufacturers:

A significant, positive result of the Program is that costly litigation against drug manufacturers and health care professionals who administer vaccines has virtually ceased. Although an individual who is dissatisfied with the Court’s final judgment can reject it and file a lawsuit in State or Federal court, very few lawsuits have been filed since the Program began. The supply of vaccines in the U.S. has stabilized, and the development of new vaccines has markedly increased.

Although I searched the CDC website (and the DOJ website, though it would be an odd location for such information), I found no mention of how we determine where, whether, or how many new vaccines are needed, or any gauge for evaluating the benefits of this marked increase in the development of new vaccines.

Why the vaccine debate won’t die, exhibit three: Instead of trusting families to make their own decisions regarding vaccination, our system forces them to vaccinate, creating an overflow market for vaccine products while also absolving the manufacturers from liability if their products prove unsafe. The incentives are—I’ll speak technically here—out of whack.

Our Own Personal Proof?

After Martin was diagnosed with autism and I began to recognize his immune troubles, I fought to keep him in school without further vaccinations. I had his blood drawn for titer tests to establish that he did not need the second MMR shot required for school. Martin’s regular pediatrician wasn’t available, so another doctor from the practice met with me to review the results. A measles (rubeola) titer is considered immune if the IgG exceeds 0.70. Martin’s level was 1.25. A mumps antibody titer is considered immune if the IgG exceeds 0.50. Martin’s level was 3.57. A rubella antibody titer is considered immune if the IgG exceeds 10. Martin’s level was 67.2. Look again at those numbers. Martin’s titers, even without the required “booster” shot, were 179-714% of the levels that establish immunity. The first MMR shot had sent his immune system into a frenzied hyper-response. What would a second shot have done?

“Oh,” said the substitute doctor as he examined the results. “Ah. I think, if you want, um, I think, would you like me to write an exemption from vaccinations for the time being?”

Why, yes, I responded. Yes, that would be nice.

From that day until we moved out of New York City, the substitute doctor became Martin’s regular pediatrician.

Why the vaccine debate won’t die, exhibit four: I still have something to say about it.