ASD Recovery Recipe: Goldfish Crackers

Posted on October 22, 2014 by findingmykid

Martin attends first grade now, in a self-contained special-education school for speech- and language-delayed pupils. The school, which is private, meets Martin’s needs in pretty much every way I can imagine. The curriculum is designed by speech pathologists; the student-teacher ratio is small enough that Martin, despite his attention trouble, has never needed a 1:1 aide to keep up; social skills are integrated into lessons, lunch, and recess; and the class comprises academic high-achievers.

If you put a gun to my head and told me to make a complaint about the school, I would say this: Martin’s teachers use “food reinforcers.” The first week of the term, we parents received a permission form, asking whether our child could eat popcorn, Goldfish® crackers, Skittles®, or M&M’s® as rewards for behavior and hard work. In Martin’s case, of course, the answer was no, no, no, and no. Instead I sent some go raw brand “chocolate super cookies” for the teachers to give Martin.

The go raw cookies have worked well, in terms of rewarding Martin in school. Nevertheless, Martin has become fixated on the treats his classmates receive, specifically, popcorn and Goldfish® crackers. Every day Martin asks me, repeatedly, “Mommy, does popcorn make my belly hurt? Can you make popcorn not make my belly hurt? Mommy, can I have Goldfish crackers? Can you make Goldfish crackers not make my belly hurt?”

Popcorn I can’t do anything about. Organic or otherwise, it’s not GAPS-legal.

Goldfish crackers? There, I’ve been thinking, I might have a shot. First, I went on-line and ordered a teeny-tiny goldfish-shaped copper cracker cutter. Not kidding. Then, I began searching for a recipe that was, or that I could make, GAPS-legal. This turned out to be much more challenging than procuring a teeny-tiny goldfish-shaped copper cracker cutter. Every GAPS recipe I found included cheese, which Martin cannot have. I struck out also when I Googled Paleo goldfish cracker recipes; by and large, they container butter, or arrowroot powder, or some other ingredient anathema to Martin. I found one recipe ridiculously labeled “gfcf/vegan” when the first ingredient was whole-wheat flour.

At long last, on the delighted momma blog, I found a recipe for “Flourless Cheez-It Crackers” that I could adapt. The ingredients, as listed in the recipe, are almond meal, nutritional yeast, egg, sea salt, coconut oil, and lemon juice. (I had to do a quick search of whether nutritional yeast is GAPS-legal, as I haven’t used it since putting Martin on full GAPS.) I substituted olive oil for the coconut oil, for taste reasons, and increased the nutritional yeast slightly and doubled the sea salt. Here was the recipe, as I prepared it (with 100% props to delighted momma):

2 cups almond meal, which became slightly less when I sifted it for texture
¼ cup plus 2 tsps nutritional yeast
1 tsp sea salt
1 egg
1 tbsp olive oil
juice of one fresh lemon

Combine sifted almond meal, nutritional yeast, and salt. In a separate bowl, whisk together egg, oil, and lemon juice. Combine the two bowls and stir well by hand. Roll out the dough on a stainless-steel cookie sheet lined with parchment paper. (I also dusted the parchment paper with more sifted almond meal, to make it easier to move the crackers once cut.) Cut the dough into shapes. Bake at 350 degrees for 15-20 minutes, or until the crackers are dark and crispy.

The delighted momma blogger proclaims, “This was a breeze!” I have to guess that her experience was breezy because she did not take the teeny-tiny goldfish-shaped copper cracker cutter route; she rolled out the dough and cut it into squares. My experience involved rolling and re-rolling dough as I pressed the goldfish shape repeatedly, transferred each cracker on the parchment paper, and then used a toothpick to fashion a fisheye and smile.

Total time investment? More than two hours for two sheets of goldfish.

Worth it? When Martin arrived home from school and saw my second sheetful about the enter the oven, he asked, “What are you doing?” I could see from his face that he knew, full well, what I was doing. I showed him the goldfish that were already baked and offered him one, which he took and ate, as both of us melted with delight. Totally worth it.

Postscript: I can’t send the homemade goldfish to Martin’s school, because the school is nut-free. So if you put another gun to my head and told me to make another complaint about the school, I guess I might say, “I’d sure like to send nuts.”

Good Medical Care

Posted on October 17, 2014 by findingmykid

Without any real statistics to show, I am going to assert that most of us in the biomed community have MAPS doctors for our kids. “MAPS” stands for Medical Academy of Pediatric Special Needs and is the successor term to DAN!, or Defeat Autism Now! MAPS doctors are trained and certified in the treatment of chronic conditions like autism. They help our children with the process of recovering from autism/autoimmune disorder, and with associated issues like epilepsy or food allergies. They’re kind of like general practitioners for children affected by autism.

Then we have other doctors, the host of professionals who accompany childhood, plus (because autism is the symptoms of sickness) assorted specialists. Neurologists, geneticists, ophthalmologists, audiologists, endocrinologists, allergists.

One challenge prevalent for biomed families is finding “other doctors” who respect their MAPS doctors’ efforts. You can imagine the potential conflicts. When we first started biomed, for example, Martin had constant skin rashes, so itchy that he would scratch his legs bloody. We took him to a dermatologist, who diagnosed “sensitive skin” and suggested using Cetaphil “gentle” cleansing and moisturizing products. Our MAPS doctor, recognizing candida overgrowth, asked us to substitute natural products for Cetaphil and work on balancing gut flora to bring yeast under control. (We went with the MAPS suggestion, healing Martin from inside.)

The elephant in a room occupied by both MAPS and non-MAPS physicians is vaccines. MAPS doctors may urge caution when it comes to vaccinating, especially for kids with a history of reactions to vaccines, while non-MAPS doctors may push vaccinations “on schedule” for all kids. Some pediatricians won’t even accept patients whose families feel they cannot vaccinate.

So there are challenges, navigating the biomed path accompanied by non-MAPS healthcare professionals.

When we moved to the suburbs last year, I took the opportunity to find a Martin new pediatrician and dentist. Our practitioners in the City were adequate but traditional. The dentist made me sign forms stating that I had “refused” routine X-rays against her recommendations, and once she applied fluoride to Martin’s teeth even though I had stated at the beginning of our relationship that I didn’t want any fluoride, ever. Our pediatrician was perhaps more conscientious; I had a positive experience when one of her partners took an interest in our biomed approach, and the practice gave us a vaccination exemption of indefinite duration after Martin reacted poorly to the H1N1 shot. Despite those perks, however, the doctors weren’t worth venturing back to the City.

I found a new pediatrician through conversations with other biomed moms. This doctor, though not a MAPS doctor, is knowledgeable about autism recovery. She stocks her office with papers like “The Autism-Gut Connection” and “SIBO Symptoms and Treatments.” I believe she can be a second set of eyes on our biomed protocol, which is a good thing.

The dentist I found on-line. I searched for dentists who have experience working with special-needs kids, and then I followed up with phone calls about whether the doctor minds if we opt out of fluoride treatments. Martin’s first check-up there, six months ago, took place on a weekday morning, when few kids were present. The hygienist wasn’t great with him. When Martin became upset, she tried being noisy and distracting. I had to stop her and explain that, with Martin, the best approach is quiet explanation of what is happening. We were more successful with the rest of the visit. The dentist was able to get a good look at Martin’s teeth despite his protests, and no one gave me any trouble about fluoride.

Unfortunately, both the new pediatrician and the new dentist are far from our home. Last week, as I drove more than 45 minutes for Martin’s next check-up, I questioned whether the dentist was worth the fuss. As Martin’s appointment time passed, and we were still stuck in morning traffic, I thought, No more. This is the last visit to this dentist. Surely I can find someone in our own town who doesn’t push fluoride and is good with special needs.

When we finally arrived, the office was sleepy, with only one other patient waiting. This time I told the hygienist (a different one than last time) up front that Martin responds best to calm words. She understood immediately. When Martin declared that we would get a check-up but would not lie down, the hygienist responded, “Of course not. Here, I will just recline the chair a little bit so you can see the television on the ceiling, if you want.” Martin went for that.

We had a different dentist, too, a man. He began by remarking that he saw on our information card that Martin follows the GAPS diet, and asking how that was working for us. (A dentist! Asking how GAPS is working for us!) I told him, in general terms because Martin was in earshot, about our experience. The dentist responded, “It’s remarkable, isn’t it? My friend with MS made similar dietary changes, and his symptoms have really responded.” Then the hygienist said, “I know someone who has been able to stop taking fibromyalgia medication since she went on a diet like that.” Then both the dentist and the hygienist started discussing their own emphasis on fresh, whole, organic foods.

Martin, meanwhile, behaved like a champion. He let the dentist recline his chair a little more and complete a full examination plus cleaning. He interrupted the procedure only to point to the ceiling television and say, “That’s Nick Jr.!”

When the dentist was finished with Martin, he said, “Martin’s teeth look great. Not having refined sugar is obviously helpful, and you’re doing a solid job with brushing and flossing. As to the fluoride, substituting xylitol is a good choice. More and more of our parents are moving that direction.”

This dentist gives out balloons. Martin requested a yellow balloon.

I, now oblivious to the nearly hour-long drive that had aggravated me, reported to the front desk to schedule our next appointment.

I don’t mind questioning or challenges regarding Martin’s care, as long as the questioner/challenger acts with an open mind, has a stake in Martin’s well-being, and isn’t just playing Devil’s advocate.

But at the same time, it is hard to overstate the relief I feel when everyone is on the same page.

[Note: I know biomed families have mixed feelings about xylitol. I will blog about that at a later date.]

What’s Working Now

Posted on July 25, 2014 by findingmykid

Are you familiar with miracle products?

I participate in various social media groups for parents with recovering children. Often, I see posts like this:

“We just started this [miracle enzyme, supplement, probiotic, oil, &c.] ten days ago, and I can’t believe the progress! My son is making consistent eye contact, he’s increased his vocabulary, and he finally potty trained! Today I got a note from his preschool teacher saying he is more ‘with it’ and making cognitive leaps. I’m kicking myself that we didn’t try this before now. Anyone having similar results?”

And then, comments like these:

Commenter 1: “Yes, yes, yes! [Miracle product] moved my son from babbling to words!”

Commenter 2: “We added [secondary product] to [miracle product], and the gains were even greater. We’ve been on them both for a month and will be continuing.”

Commenter 3: “This is all amazing! Where can I buy [miracle product]?”

Commenter 4: “[Miracle product] got my daughter into Princeton!”

Posts, and comments, touting a miracle product frustrate me.

Miracle-product proclamations frustrate me because autism varies from kid to kid. The health and immune challenges underlying autistic symptoms include, and exceed, neuroinflammation and other chronic swelling, mitochondrial disorder, genetic mutations, leaky gut, yeast overgrowth, oxidative stress, excess propionic acid. Autism exhibits disparate effects on cerebral function in girls versus boys. “Autism” is not a single malady and is never identical. That miracle product? Shoot a paint ball into a crowd. You’re bound to hit someone and splatter a few others. The rest will probably be left wondering what the fuss is.

I can understand that, if you’re thinking about trying a new product, you may want to post an inquiry about others’ experiences with the product. But given that the underlying disorders are child-specific, and that recovery means finding the right combination of many factors over time, why tout miracles? We parents of children with autism, we tread on hope. We’re easily led. When ten marvels in a row fail to help our kid, we end up embittered and broke.

Recovery from autoimmune disorder is a long, tedious slog without shortcuts. Sure, some families recover their children within a year, those lucky dogs. Most take much longer. Many children never get significantly better. The only miracle in autism is that, given our increasingly toxic world, we’re able to fight the spectrum at all. The amazing supplement, probiotic, or whatever, might indeed have given your kid the week of his life. That’s not a wonder. If you must tout a miracle product, don’t do it after a week, or a month. At least wait a year, then let us know if the developments continued, and speak in measured, child-specific terms.

Dear readers, are you wondering why I’m ranting? That was all an introduction to today’s post, which in comparison to its introduction, may seem brief. The topic is what interventions are working, right now, in combination, for my one kid, with his own particular combination of health challenges.

Following “Hard to Blog an Avalanche,” I received several inquiries about what I think has instigated Martin’s recent growth. Usually, when Martin improves and I’m asked why, I answer, “Don’t know. Obviously, something in the millions of things we’re doing is helping.” This year, I have a better inkling. I have seen five interventions correlate, almost certainly, with better health and/or increased speech:

1. Camel milk. Martin started drinking it this spring, and his language took off. Why? Too long for this post. Check back in a day or so to read “What’s the Deal with Camel Milk?”

2. The GAPS diet. I’ve written a lot about GAPS recently, and I’m also working on a post about how I don’t buy into everything that Dr. Campbell-McBride says. For now, it suffices to say that Martin’s digestion has improved.

3. Candex. We have battled yeast overgrowth, in one form or another, repeatedly since we began this journey. Going off just about every form of sugar helped, but only for a while. Nystatin did nothing positive. Earlier this year, poor Martin’s yeast was so bad that he clawed his skin raw. Finally, his biomed doctor said to try Candex, an enzymatic product. The same night he started Candex, Martin had a foul-smelling BM—yeast, I think, leaving his system. The next day, the skin rash began to clear. Since then, the candida has been under control, so much so that I’ve been able to add a little more fruit into Martin’s diet without worrying about the fructose feeding yeast.

4. Enhansa. Lee Silsby Compounding Pharmacy makes Enhansa, or curcumin, a derivative of turmeric. Martin suffers from chronic inflammation, which places undue pressure on his compromised immune system. Turmeric’s anti-inflammatory properties seem to be relieving that inflammation, even to the point that his face has lost its “puffy” appearance. (The puffiness was visible only to me and others to whom I pointed it out in photographs. Still, it was there, and a symptom of his systemic inflammation.)

5. MitoSpectra. This is a proprietary mitochondrial supplement blend of vitamin C (as ascorbic acid), vitamin E (as d-alpha tocopherol succinate), vitamin B5 (panthothenic acid), L-carnitine, and coenzyme Q10. We have used each of the component supplements before, alone and in combination, and indeed Martin still adds separate sources of vitamin C and L-carnatine. MitoSpectra, however, seems to combine the five supplements in a form and proportions that do well for him: He shows more coordination and energy, and less “floppiness.” At times I wonder whether those improvements are dependent on continued use of MitoSpectra; my hope is that, as his immune system overall continues to heal, his own mitochondria will be able to assume the work MitoSpectra is now doing.

Camel milk, GAPS, Candex, Curcuma, and MitoSpectra. Not a miracle, not any one of them.

Each a step in this tortuous recovery path.

Just maybe a longer stride than I’m used to.

Increased energy, coordination, and willingness to try new things. I’m so into these changes.

ASD Recovery Recipe: Mustard Mushroom Boats

Posted on May 19, 2014 by findingmykid

“Mustard Mushroom.” Say that ten times, fast.

Let me begin with full disclosure: Martin ate these mushrooms begrudgingly, and did not like them. C’est la vie. Mushrooms seem to have some beneficial effects for ASD kids. (Again this year, Autism One has a seminar on the topic.) Unfortunately, Martin doesn’t like to eat mushrooms. My go-to method is mincing mushrooms and cooking them with lentils, which are GAPS-legal. Also on the lookout for new ideas, I found a recipe on-line for stuffed mushrooms with mustard (his fave) and altered it to include the base ingredients I had.

12 crimini mushrooms

one apple or pear

¼-½ cup leftover meat

½ cup mustard

Dice the fruit, and the leftover meat. (I used turkey bacon.) Remove the mushroom stems from the caps, and dice the stems, too. I diced everything to about ¼-inch cubes. If I make this recipe again, I will dice smaller, which may make the “stuffing” more palatable. Sauté the mushroom stems in a bit of olive oil, and if the leftover meat isn’t already cooked, sauté that too.

Mix the stems, fruit, meat, and mustard, and fill the crimini caps with that mixture. I also sprayed the caps with olive oil, to give them a sheen.

Spray a baking sheet lightly with olive oil, and set the caps on that. Bake 15 minutes at 350 degrees.

Some pictures are below. I’m thinking I could really use a “food stylist,” or at least a better camera.

This is the way the mushroom boats looked when Martin’s meal started.

Before long the boats became more of a casserole, as I cajoled Martin to eat what were clearly mushrooms.

In the GAPS

Posted on May 8, 2014 by findingmykid

As assorted posts have mentioned, two months ago I switched Martin’s diet to GAPS. “GAPS” stands for “Gut and Psychology Syndrome” and is the work of a British doctor and nutritionist, Natasha Campbell-McBride.

Dr. Campbell-McBride’s book, Gut and Psychology Syndrome, sets forth how autism (along with dyspraxia, ADD, schizophrenia, and other apparent brain disorders) is symptomatic of a compromised immune system, linked with an imbalance in gut flora. The author suggests healing the gut with a diet comprising fresh foods prepared at home, without grains or sugars or other carbohydrates, and with plentiful meat and/or fish stock. (I’m simplifying.)

It’s been more than three years since we started eliminating foods from Martin’s diet. Since January 2011, Martin has not eaten gluten, casein, soy, corn, refined sugar, processed food, additives, or conventional/GMO food. We also introduced some foods that Martin, a vegan since birth, had never had before: eggs, ghee, honey, and fish oil. After some months we also added meat, which was especially challenging because I’m vegan and Adrian is pescetarian. Other variations along the way in Martin’s recovery diet have included restricting oxalates, temporarily avoiding foods to which Martin showed sensitivities, and trying to eliminate all sugars for one summer.

As of February 2014, Martin was eating meat, eggs, vegetables (including limited amounts of starchy vegetables like sweet potatoes), fermented vegetables, legumes, gluten-free grains like buckwheat and rice, and very little fruit. In puddings and baked goods he had complex sugars like raw honey or raw agave. With very few exceptions, like rice crackers, everything was organic and homemade.

Which is pretty good.

The thing is—Martin’s gut still didn’t seem to be healing. His bowel movements were light-colored and fluffy or flakey, instead of firm, and he had started complaining of stomach pain. Again. I thought we were done with stomach pain.

I decided to take the diet a step further. In the ASD recovery world, there are several diets that people adhere to. The formulations start with gluten-, casein-, and soy-free and branch out from there. Two of the most popular diets are the Specific Carbohydrate Diet, or SCD, and GAPS, which is an adapted variation of SCD. I didn’t have a scientific basis for choosing between GAPS and SCD. (Science doesn’t like me. Science doesn’t want me to understand it.) Some parents love SCD. Some swear by GAPS. Because I already owned Dr. Campbell-McBride’s book and was more familiar with GAPS, I decided to try that route and hope maybe Martin would clear some hurdles to gut health.

For extreme gut distress (ongoing diarrhea, for example), Dr. Campbell-McBride suggests various stages from an “introduction” (almost only bone broth) to “full GAPS” (all the GAPS-compliant foods, still incorporating ample bone broth). Martin was not experiencing extreme distress, just a lack of overall gut health. Therefore, I skipped the introduction stages and put him directly onto full GAPS.

Switching to GAPS meant three primary changes. First, Martin has to stop eating starchy vegetables, cocoa (temporarily), rice crackers and his few other grains, all sweeteners except raw honey, and some lesser-used foods like arrowroot, cannellini beans, and roasted nuts. (Raw nuts are acceptable.) Second, he gets to add a few more fruits, if yeast is under control. (Last month, after the nystatin debacle, Martin started taking Candex, which has been helping balance yeast without the side effects.) Third, he drinks meat stock with every meal. Most weekdays he takes only meat stock for breakfast. I make stock weekly, rotating among chicken, beef, lamb, and whatever other meat/bones I can get.

Which brings us to the million-dollar question: Is it working?

Two months is too little time to make a long-term prediction. (By way of digression, I’m not sure I’ve ever used “two,” “too,” and “to” in a single sentence before now.) Martin’s gut is improving; he’s stopped thrusting his fists into his abdomen and complaining of stomach pain, and his bowel movements have become firmer. On the other hand, I’m yet to see unusual progress in his behavior. He’s been up and down, the same jaggedly positive trend as ever in his recovery. I call it 100 steps forward, and 99 steps back. I remain hopeful, nonetheless, that sealing his gut will soon lead to more behavioral improvements, because he will be better able to absorb his nutrients, supplements, and so forth.

At this time, the two-month mark, I’m giving a tentative thumbs-up to GAPS.

Yes, this is the worst-quality photo ever. Sorry. It’s Martin, taking his bone broth for breakfast, “assisted” by our cat George.

More Civility

Posted on April 13, 2014 by findingmykid

Last year I took Martin to a friend’s sixth-birthday party. I talked to the birthday boy’s mom in advance and knew they were serving pizza. For Martin I brought homemade GFCFSF pizza and cookies.

I thought Martin would be happy with those choices. With the pizza, he was. I heated it in the hostess’s oven and served it on a party plate, just like the other kids’ pizza. Unfortunately, the situation went south when cake time rolled around. Martin didn’t want just any treat. He wanted the cake. And when he didn’t get cake, he went into meltdown mode.

I might give in to something like a non-organic apple. But I don’t concede gluten-, dairy-, and sugar-laden cake. I picked up my screaming kid and moved to another room, where I held Martin on my lap and tried to calm him with promises of a special cupcake when we got home. (I would gladly have stopped at blessed Babycakes, which sells cupcakes that are free from gluten, dairy, corn, soy, and refined sugar.)

Martin was having none of my peacemaking. He cried and wheezed, inconsolable. At this point, another mother, whom I never had met, entered the room and asked, “What’s the problem?”

“My son is upset because it isn’t a cake he can eat,” I replied.

The stranger came closer and said, directly into my ear, “Just tell him you’re taking his piece home for him to eat there. By the time you get home, he’ll forget about it.”

I had a child on my lap near hyperventilation. This was not the time to explain that I don’t follow lie-now-and-hope-he-forgets approach to parenting. So I replied, “I wish I could, but he remembers everything.”

This woman was not to be deterred, neither by my blow-off attempt nor by Martin’s tears. “What is he, gluten-free?” she asked. “Why don’t you give him some of the ice cream?”

Her voice was loud so I could hear her over the racket, and her tone was sharp so I would know that she didn’t approve of a gluten-free diet.

“It’s harder than that,” I said, trying to sound sheepish so she would leave and let me return my attention to Martin. “He doesn’t eat gluten or dairy or refined sugar.”

I didn’t bother adding soy, corn, starches, most carbohydrates and fruits, non-organic or processed foods, or preservatives to the list of what Martin doesn’t eat. No matter. Apparently gluten, dairy, and refined sugar were enough to earn this stranger’s condemnation. She said, “Oh my God.” Then she rolled her eyes, turned her back to me, and walked away.

So I got what I wanted: She left us alone, letting me return to comforting Martin.

The rudeness I could have done without. Also, the particular phrase she chose, which is offensive to me.

Most of the children attending the birthday party had special needs. Later, after Martin calmed down, I saw this woman with her son. He wore ankle braces and hearing aids, and he engaged in atypical behaviors. Our conversation had been special-needs-parent-to-special-needs-parent, but it sure didn’t feel that way.

What went wrong at the birthday party? First, it was a terrible time to discuss anything. Martin was in full meltdown mode. The stranger could have said, “You have the most intriguing eyes I’ve ever seen, and I would kill for a figure like yours,” and still I probably would have tried to blow her off. Second, she was plainly unwilling to think outside her own box. Really, I don’t even think she wanted to help. She wanted to judge.

Let’s compare to a conversation in which I found myself a few weeks later. This one happened after a meeting of our district’s special-education PTA, when parents were hanging around to mingle. I ended up talking with a woman who introduced herself as the mother of an 11-year-old with Asperger’s. When she asked about Martin, I said that he has made enough progress that I’m not sure whether to say “autism,” “high-functioning autism,” “Asperger’s,” or something else. She asked about what therapies have helped the most. I replied that we do biomedical and homeopathic interventions, and that those, combined with a restricted diet, seem to have made the difference.

We talked some about Martin’s diet. Then the mother said, “I think a lot of so-called autism remedies are snake oil, people trading on hope and desperation.”

I replied that she has a point. Even after years on the biomedical path, I find it hard to distinguish between legitimate interventions and unsupported promises. I try not to let it get me down. I hire and rely on experienced doctors, and I do as much research as I can manage.

The mother asked, “Do you do the dangerous stuff, like chelation?”

I replied that we haven’t chelated yet but plan to; that from what I know, chelation is safe if done properly; and that, in terms of which interventions have relieved autistic symptoms, chelation rates highest in parental reports.

She said, “I hear what you’re saying. But people who say you can treat autism are the same people who say vaccines cause autism. Do you believe that?”

I replied that I think the strict cause-effect narrative has undermined legitimate debate about vaccines. Everyone knows that vaccines are dangerous for a child with a compromised immune system—that’s why parents are told not to bring a child for shots when she has, for example, a cold or an infection, and why a child undergoing chemotherapy cannot be vaccinated. Autism, I said, is the symptoms of an underlying immune disorder, often with a genetic component. The immune disorder may exist before the symptoms manifest. If a child is asymptomatic, his parents and doctors may not recognize the immuno-problems, and they may therefore go ahead and vaccinate. The vaccine, in turn, causes the already compromised immune system to go haywire, and then the symptoms manifest. In such a scenario, the vaccine didn’t “cause” the autism, but it did exacerbate the pre-existing immune disorder and cause the symptoms (i.e., the autism) to appear.

The Asperger’s mother listened to my entire monologue. When I finished, she boosted my ego a little by saying, “You know, you’re the first person who’s ever told me about a link between autism and vaccines without sounding insane.”

We talked for 20 or 30 minutes, this mother and I. Don’t worry! It wasn’t all me rambling on. She knew tons about navigating the special-education system, and I grilled her for tips. We ended up exchanging numbers and thanking each other for the shared insight.

Did I convince this mother to begin biomed with her 11-year-old? Probably not. Did we have a positive interaction? Definitely. Unlike at the birthday party, the special-education PTA event was the right time to discuss helping our children, and the mother I met was curious and open-minded.

Civility is out there.

Even if it doesn’t always seem that way.

School Food

Posted on April 10, 2014 by findingmykid

In the month since I put Martin on full GAPS diet, I think, the question I have heard most from parents is, “What food do you send for school?”

Martin’s school requires that each parent send lunch and two snacks. This morning, for Martin’s snacks, I packed (1) lime pudding, made from avocado, manuka honey, vanilla extract, and lime juice; and (2) half a pear, sliced and dredged with lemon juice. Last week I posted a picture of a dippin’ plate with carrots, peppers, and pear. The GAPS diet advises that fruit be eaten away from meals, because fruit enzymes work better alone. So, to the extent Martin eats fruit (I try to limit fruit, because he has so much trouble with yeast flares, which can be fed by sugar), I give it as a snack.

For Martin’s lunch, I packed his LunchBots container with (1) chicken breast with Himalayan pink salt; (2) avocado (I do a lot with avocado) mashed with cultured garlic, which you may remember from the “dippin’ plate”; (3) probiotic Zing! salad; and (4) raw cauliflower florets.

I have been trouble getting Martin to eat raw vegetables. That’s a shame. Raw veggies are full of good digestive enzymes, and they might help loosen his front-bottom baby teeth, which I want to do because the adult teeth already have broken through behind them. I predicted the LunchBot would come home with the chicken and avocado gone, the Zing! salad mostly eaten, and the cauliflower untouched.

Do I know my son, or what? I was wrong only insofar as he took, maybe, one or two pieces of the cauliflower.

Not a total success, but, hey.

Some other lunch combinations are bison jerky with homemade probiotic catsup and sauerkraut; chicken-and-egg bread with spread made from sprouted (i.e., soaked overnight before cooking) lima beans, olive oil, and garlic; or the ever-popular “meat and veggies,” i.e., whatever leftover meat is in my fridge paired with whatever fermented veggies are in my fridge.

Oh, yes. Before anyone writes it as a comment, I will address what all readers must be thinking right now: Martin’s mom has a real Gwyneth Paltrow thing going on here if she thinks any of this is reasonable.

Trust me—I know. I mean, “homemade probiotic catsup”? Who does that?

Autism-recovery folks do, I guess.

Addendum

Posted on March 24, 2014 by findingmykid

I’m not much for addenda (except insofar as FindingMyKid.com, by the nature of blogging, is one long series of addenda to its “About” page and initial post). Nevertheless, I simply must add four notes to Saturday’s crappy-to-happy post.

1. I wrote, “It may go without saying that we ended up in a rush to get to [Martin’s] afternoon social program at the JCC, and that I left the kitchen a disaster, and that I didn’t get a chance to feed myself much, and that I was feeling worse by the minute.”

We were rushing to get to the JCC by 2:00 pm. We left home ten minutes late, and then I had to take Martin to the restroom to change into new pants. It was after 2:15 pm when I finally dropped him in the correct room. Still, only one other child had arrived, out of the dozen or so who usually attend. “Small group today?” I asked an instructor. “I don’t think so,” she replied. “They’ll be trickling in.” Relieved that we weren’t the only tardy family, I headed to the library to write.

I posted “From Crappy to Happy” at 4:55 pm, just in time to pick Martin up from the three-hour session. As I arrived at the door, an instructor was saying, “Okay, everyone get your coats.” Still—yes, that’s the second “still” in as many paragraphs, by design—she looked surprised to see me. One girl from the group asked, “Is Martin going home with you?” No other parents had arrived yet. The staff seemed to scramble to gather Martin’s belongings, and one had to chase us down the hall because they’d forgotten to include his art project.

Did any of this strike me as odd? No. I suppose I was spending too much time in my own head, trying to keep a good attitude, planning our evening, debating whether to insist that Martin use the bathroom before we left.

He was getting settled in his car booster seat when I saw the rest of his group, wearing their coats, walking along the parking lot to the outdoor playground.

Because the program meets from 2:30-5:30 pm, not 2:00-5:00 pm.

Because, after more than six months at the JCC, I had the times wrong.

Because we never had been late in the first instance.

I said, “It looks like your friends are going to spend some time at the playground. Would you like to join them?” Martin said yes. I felt pretty dopey as I walked him to the playground and explained my confusion.

2. The first time I picked Martin up, while the staff were scrambling to gather Martin’s belongings, the head instructor told me that Martin had had his best afternoon ever. He had talked and talked, been engaged, and participated in every activity. When I dropped him off (early!), I had explained that, although his swim trunks and towel were in his backpack, he’d been sick all week and should be excused from swimming if he didn’t want to get in the pool. Martin almost never wants to get in the pool, so I expected him to take the excuse and run. Nope. The instructor said that as soon as Martin saw the others getting ready, he asked to get into his swim trunks, too. Not only that, he showed off for the staff, with some trick the instructor called a “froggy move.”

Saturday evening, while Martin was in the bathtub, I asked whether he could show me and Adrian the “froggy move” he’d done in the pool. Without hesitating, Martin shifted so his feet were flat on the bathtub bottom, maneuvered himself into a squat position, and grabbed his knees. “This,” he said earnestly, “is how a froggy looks in the water.”

3. I wrote, “In the end, [Martin] ate the dippin’ plate. The GAPS diet isn’t easy, especially when it comes to packing for school. If Martin accepts a dippin’ plate once or twice more at home, I’ll give it a go for school lunch.”

Sunday afternoon, Martin ate another dippin’ plate, albeit with a little assistance. So that’s what he took for school lunch today: carrots and yellow bell peppers (included because yellow is his favorite color), dip made from avocado and fermented garlic, and a side of pear. (GAPS diet says to do fruit alone, not with a meal. Cut me some slack. I had to fill that last compartment in the lunch container, and rice crackers are out for now.) The dippin’ plate doesn’t really have protein, so he had a protein-heavy breakfast of bone broth and chicken-and-egg bread with ghee, and I sent some sunbutter treats for his morning snack. Here’s hoping the lunch container comes back empty.

4. On the way home from the JCC, late Saturday afternoon, Martin and I heard both My Sweet Lord and Heart of Gold on satellite radio. For me at least, that combination effects at least a 27.5309% improvement in mood.

Saturday turned out quite well.

Martin’s school lunch today: a dippin’ plate with carrots, yellow bell pepper, avocado-and-fermented-garlic dip, and pear.

ASD Recovery Recipe: Coconut French Toast Bites

Posted on February 24, 2014 by findingmykid

It’s been a while since I posted a recipe. I can’t take full credit for this one; my friend Stacey (she’s busy recovering her awesome six-year-old) gave me the idea of using Julian Bakery Paleo Bread (coconut) for French toast. I came up with the “coconut” and “bites” innovations, after Martin grew tired of regular French toast. (He hates all things breakfast. I think I’ve mentioned that.)

1 slice Julian Bakery Paleo Bread (coconut), or other acceptable GFCF bread with a traditional texture
1 egg
ground cinnamon
ground cloves
unsweetened shredded coconut
coconut oil

In a small bowl, whisk the egg until light and foamy. Add cinnamon and cloves to taste.

Cut the bread slice into squares, approximately ½” in length. Err on the small side when cutting, because the egg and coconut and oil will puff ’em up, and you don’t want “bite-size” to become “gag-size.”

Mix the bread squares into the egg. I let them saturate for a few minutes; this morning the bread soaked in egg while I prepared Adrian’s lunch.

Meanwhile, heat coconut oil over medium heat.

Once the bread is full of egg, add some shredded coconut to the bowl and stir gently until the squares are coated with coconut.

Fry the bites in coconut oil, flipping once.

If you need some extra incentive to sweeten these up, try a few drops of a low-glycemic sweetener like coconut nectar or warmed Manuka honey.

Der Process

Posted on November 24, 2012 by findingmykid

I’ve written before about my scrapes with the Transportation Security Administration.

I travel with Martin, a lot. When we fly, I carry his myriad pills and drops and liquids and compounded formulations in a heavy-duty black shoulder bag. (It’s repurposed. Once upon a time the bag held my breast pump.) Many of the supplements that aid Martin’s recovery are homeopathic and otherwise imprinted or finely calculated. I will not allow the supplements to pass through the security x-ray, because it can scramble their delicate properties.

Because of Martin’s special diet, I also have to carry food in my knapsack. In the past, my go-to has been nut butter with rice crackers. Now I like coconut butter with crackers. The TSA doesn’t like either.

The scene changes each time we pass security.

Regarding food, I’ve been told, at various times:

(1) nut butter is no problem and can come on the plane;

(2) nut butter is a problem unless it is in a sealed, unopened container;

(3) nut butter cannot be in a sealed, unopened container because all those containers are too big;

(4) nut butter is exempt from security if I’m carrying a doctor’s prescription for Martin’s restricted diet (I always am);

(5) our doctor’s prescription for Martin’s restricted diet makes no difference to what we can carry on the plane; and

(6) we can bring nut butter on the plane only if I leave the security line, take all of my belongings and Martin to the food court, request to-go containers from some restaurant, divide the nut butter into three-ounce portions among those allegedly available to-go containers, and return to security with the newly packaged servings. On the day that this food-court option was given, the TSA agent insisted that the repackaging could be accomplished in the ten minutes before our flight was to board. It became one of many flights on which Martin ended up without nut butter.

I never know which story we’ll get about the nut butter, or coconut butter, when we reach the front of the security line. And yet, traveling with Martin’s food is a piece of cake—sorry—compared to carrying supplements that should not be scanned.

We’ve been in Texas, on Thanksgiving vacation. Last week, when Martin and I flew from New York to Texas, we encountered a sympathetic TSA agent. I unloaded everything from the black bag into a gray security bin. The agent took the bin immediately, asked what it contained (“My son’s medications”), used one swab to check all bottles quickly, and called Martin a beautiful boy. I repacked the black bag, and we were on our way in less than five minutes.

This morning, preparing for our flight home from Texas, I requested a hand-search of the supplements. I unloaded the several dozen bottles from the black bag into a gray security bin. No one came to take the bin. A TSA agent had me stand in front of the metal detector holding it, as passenger after passenger walked by, each (it seemed) examining the contents of my bin as s/he entered the metal detector. I heard, “Hand-check on one!” called several times, but the agent in charge of hand-checking decided to restock the gray bins of three lines before showing up, so I stood in front of the metal detector a full five minutes with my bin. At length a female TSA agent approached and offered to set my bin aside while we waited for the elusive agent in charge of hand checking. Then I stood, bin-less, another two or three minutes until I was invited to pass, not through the metal detector, but through a full-body scanner, the next line over.

Adrian traveled with me and Martin today, thank goodness. While I stood there waiting, Adrian accompanied Martin through the regular metal detector (long-time readers of this blog know my misgivings about the metal detector) and collected my laptop, knapsack, boots, and jacket from the conveyor belt. On the other side of the full-body scanner, I was informed that, because I had requested a hand-search of Martin’s supplements, I would be subject to a full-body pat-down. I’ve received the pat-down treatment maybe twice before; its necessity appears randomized. A male agent ushered me into a glass-wall-demarcated waiting area and told me to await a female agent. I stood, on display in my glass-walled enclosure, until yet another agent moved me to a chair. Some twelve minutes had elapsed since I took off my boots for security.

The female agent materialized, donned latex gloves, and told me to stand with arms outstretched while she ran her hands over my body. Meanwhile, a male agent began swabbing each individual bottle of Martin’s supplements. He swished the swab cloths through a machine, which at one point sounded an alarm. He relayed the alarm news to the TSA supervisor, who alit from his perch behind us and asked which bottles were in the alarm group. Apparently 18 bottles were in the alarm group. The TSA supervisor instructed the agents to open each of those 18 bottles and retest with a sample stick.

Next the supervisor asked, “Are these all your belongings?”, indicating the black bag and assorted supplements.

I should have said yes. Instead, I answered honestly: My husband had the rest of my belongings.

And where was my husband?

Over there. I indicated where Adrian had taken Martin to sit on a bench.

The supervisor demanded Adrian’s return. Adrian complied, carrying his briefcase and my knapsack.

The supervisor ordered a hand search of my knapsack, which had already cleared the x-ray machine. Then, for reasons unclear to me, he told the agents to seize Adrian’s briefcase and search that, too. Adrian surrendered the briefcase and returned to the bench to occupy Martin. By now 20 minutes had elapsed since I removed my boots.

The female agent sat me in the chair again, to run her hands over the soles of my feet. With the pat-down thus concluded, she began opening bottles of supplements to sample.

“You can’t do that,” the male agent admonished. “Make her open each bottle.”

He meant me. I rose from my chair and picked up a bottle.

“You can’t do that,” the male agent admonished again, this time directed at me. “She has to hold the bottle while you open it.”

I gave the bottle to the female agent, who grasped it in a latexed hand while I unscrewed the top. Then she dangled a paper sample stick over the top of the bottle, dropped the paper stick into a magic container, and asked me to recap the bottle.

Then she picked up the next bottle. The next of 18 alarm-group bottles.

The male agent opened a small cooler containing Martin’s refrigerated supplements and an ice pack. He told the female agent she should sample the refrigerated items, too.

Bottle open, paper stick, magic container, bottle closed. Bottle open, paper stick, magic container, bottle closed. Bottle open, paper stick, magic container, bottle closed.

Beside us, the male agent emptied Adrian’s briefcase. Bond indentures, credit agreements, and a Longhorns t-shirt spread across the table. More than 30 minutes had elapsed since I removed my boots.

The female agent glanced at the supervisor, now atop his podium again, and whispered, “I’m sorry about all this.”

I have a son with autism who takes a million pills and drops a day. Everyone here is staring at us. I am all for airline security, but why do some TSA agents have to make this an extended production while others let us through with hardly a pause?

I said, “These are my son’s medications. I really don’t like them handled.”

She shook her head. “I know. I’m sorry.”

Bottle open, paper stick, magic container, bottle closed.

The male agent announced that he couldn’t fit Adrian’s laptop back in the briefcase. Adrian left Martin sitting on the bench and came to gather his documents and other belongings.

Bottle open, paper stick, magic container, bottle closed. Finally the agent finished, leaving me with an empty black bag and a table covered with bottles. I started returning everything to the bag, embarrassed by a few tears of frustration.

Some 40 minutes after removing my boots, I carried the black bag and my knapsack to the bench where Adrian had the boots waiting for me.

“Is it always this bad?” he asked.

“No,” I said. “Sometimes it’s better.”

We started walking toward our gate.

“And sometimes they do all that while I also have to keep track of Martin. And then it’s even worse.”

Finding My Kid

A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

Category Archives: Food