Monthly Archives: October 2014

Pill Pushers

Posted on by findingmykid
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I just spoke with another autism mom. She was distraught because the neurologist who performed her son’s MRI had called to say he found evidence of possible/potential seizure activity. She was confused because the neurologist told her to give her son anti-seizure medication, regardless of the side effects and the uncertainty whether seizure activity is even occurring. She was angry because she felt like the neurologist just wanted to get off the phone and had no interest in addressing her questions.

Why are doctors pushing so much medication?

On his latest neurodevelopmental psychological exam, Martin tested strong, academically. Although he has just started first grade, he is functioning at a second-grade level. But, the mainstream doctor who oversaw the exam stressed, when Martin gets to third grade, where the curriculum requires inferential reasoning, he might fall behind; because he can’t attend well, he can’t form inferences, either.

We know attention remains a problem for Martin, Adrian and I assured the doctor. What can we do to address it?

“Medicate him,” the doctor replied.

Medicate him?

“Medication might really get him over the hump when it comes to attention,” the doctor said.

We’re trying some other approaches right now, I said. We’re excited to be starting treatment with Dr. Zelinsky, using a sensory approach to retraining the brainstem. And Martin’s autism symptoms, including attention, tend to get better in spurts, as his body heals. Maybe by third grade we’ll have attention up to par.

“Sometimes those types of treatments can help,” the doctor said. “Still, we should start medicating sooner, rather than later. Martin’s a tricky case. It’s not clear whether he will respond better to a stimulant, a depressant, or some combination of both. We’ll have to fiddle with dosages and drug types to see what works best. If we start right now, then by third grade we’ll have it figured out.”

Adrian and I told the doctor we would like to hold off and give ourselves time to think about the medication option. Then we thanked the doctor for his time and promised to keep him updated.

This particular doctor expressed surprise at Martin’s progress since he was last evaluated, two years ago. I explained what we had done to provoke the progress, including biomed, homotoxicology, and HANDLE therapy. The fact that Martin has come so far using those approaches did not seem to affect, at all, the doctor’s opinion that we should medicate. I am not necessarily against the medication option forever, and I certainly don’t judge parents who decide to medicate their children before trying what I consider more natural treatments. That being said, I am sick of mainstream doctors trying to push medication on us at every turn. Medicate, medicate, medicate.

To the fellow autism mom who called me this afternoon, I said:

“Make a list of your questions. Demand an appointment. Bring your husband. Request copies of the MRI results. Send them to your biomed doctor, your ophthalmologist, any of your specialists who know how to read MRI’s. Get all your questions answered. Then decide if medication is the right choice.”

Because sometimes medication is the right choice. And often it isn’t.

Conformity

Posted on by findingmykid
1

When this blog picks up a new follower, I receive an email informing me, and a link to the person’s profile, or own blog. Usually, I take a look. I’m interested to see who’s interested in Martin. Among the followers are fellow special-needs parents, foodies or Paleo-types who I assume like the recipes, “inspirational” folks, and generic bloggers who (I think) follow bajillions of blogs, hoping to procure reciprocal followers.

I also find that this blog is being followed, increasingly, by readers who self-identify as persons on the autism spectrum. I feel honored to have these followers, and I want to find a way to explain that, although my family is working hard to recover Martin from autism, it is not because anything is “wrong” with Martin, or wrong with living with autism. Unfortunately, I’m not talented enough to do that explanation justice; the issue is so delicate, and complex. So instead, I wrote this post—

Last week I encountered a new member at my CrossFit box, in the 8:30 am WOD frequented by parents who have put their children on school buses and are fitting in a workout before heading to employment. The new member was about my age and dressed in exercise leggings, a sport bra, and a tank top. The same way I was dressed. The same way at least two other women were dressed. The new member and I chatted and ended up walking together to the parking lot, where we discovered that our cars were parked next to each other. The same car, except hers is white and mine is gray. We both drive the European SUV model owned by, as far as I can tell, about 10% of the families in our suburban enclave.

Gosh, I thought as I climbed into my standard-issue vehicle, just how much of a conformist have I become? Here we live in a pleasant suburban area, where I stay at home (working some, though!) while my husband commutes to Manhattan. Our yard and garden are landscaped just like all the other houses, with similar plants in a similarly lush but uncluttered configuration. Like our neighbors, we change our front-door wreath by season: We display cranberries for winter, white flowers in summer, orange berries for “harvest season,” pinecones at Christmas. We fly our flag on the Fourth of July, have jack-o’-lanterns on the stoop right now, and will set out a ceramic snow elf after Thanksgiving. Martin and I attend one of the five local churches. Our family shops at the nearest Whole Foods Market, shows up for fairs and events, runs into neighbors at the pubs and restaurants. Through our actions, we have proclaimed ourselves just like everyone else.

The autism universe includes many people who argue against “changing” an ASD child and instead support some form of “neurodiversity,” in which relating to the world in an autistic way is accepted equally with relating to the world in a more neurotypical way. For example, a group called Aspies for Freedom advocates against most behavioral treatments, and all biomedical interventions, for children on the spectrum. The group, according to a blog post in its name, states, “Autism isn’t a tragedy, or a side-effect of genius—it’s a difference to be valued,” and stands against the “idea that being neorotypical (i.e. not autistic, or another psychological neurotype) is ‘better’ than being autistic.”

As I’ve written, I don’t share the view that encouraging acceptance of all persons means we shouldn’t try to heal the autistic child. The best way I’ve got to explain it is this: There are many ways in which I conform to a suburban-mom lifestyle. There are also ways in which I choose not to conform. I’m vegan. I don’t drive that European SUV around town if I can walk or bike instead. The landscaped lawn and plant beds around our house? Maintained by an organic gardener; we pay a premium to avoid the chemicals our neighbors use. When Adrian and I were buying a house, we chose our town, and not the neighboring village, because we value socioeconomic diversity more than having neighbors like our family. In these ways, I allow myself to be an exception.

And then there is at least one way in which, apart from any choice I make, I cannot conform. That’s autism. Because of autism, my son does not attend the local elementary school, does not play in the Saturday morning soccer league, and spends his free time in therapeutic settings.

So there are choices about conforming that are within my control, and choices about conforming that are outside of my control. I am happier when I can choose whether to conform, when it is up to me whether to fit in or to stand out.

That’s what I want for Martin. I want Martin to be able to choose whether he conforms, or whether he rejects expectations. When he enters a party, I want him to think, “Do I feel like working the room, or do I just want to grab food and skulk off to a sofa?” (I, Martin’s mom, usually grab food and skulk off. Any Myers & Briggs devotees out there? I’m INFJ, strong I.) What I don’t want is for Martin to feel like working the room is not an option for him. When it comes time for Martin to choose a job, I want him to think, “What do I like to do?” I don’t want him to think, “Does that job require interpersonal skills? Dynamic thinking? Will enough support be available for me?”

If Martin wants to act quirky, so be it. If he doesn’t want to make eye contact, so be it. If he doesn’t want to play sports, so be it. If he prefers to be alone, so be it. But these should be Martin’s choices, not choices that are made for him because an immune disorder, a medical condition, leaves him clumsy and makes it difficult to relate to others.

Our school district sends a behaviorist to our home each week. Recently I addressed Martin’s social progress by explaining that Martin has reached a point where he asks about other kids and wants to engage them but doesn’t seem to know how. The behaviorist said that wanting to engage is an important step. She advised that I might foster further development by observing other children with Martin and discussing strategies for approaching the children. Martin might find common ground, she suggested, by asking if the other kids like the same things as he does. What does Martin like? she asked. Does he like Yankees baseball, or Mets? Giants or Jets? Superheroes, like Iron Man or Captain America, that sort of stuff? SpongeBob? Pokémon? Disney? Frozen? Bike riding? Karate?

No, I replied. No, no, no, no, no, no, no, no, and no. Martin likes classical music and drawing pictures. He doesn’t watch television or children’s movies.

You’ve got to get on that, the behaviorist advised. Have him do the same things as other kids. Give him some common ground.

That weekend Adrian and I took Martin, wearing a sports jersey, with his feet in brand-new Spider-Man sneakers, to see Alexander and the Terrible, Horrible, No-Good, Very Bad Day, his first children’s movie outing with us. We are helping him conform now, so that later he can choose for himself.

To my readers with autism, thank you for coming to this space. I hope you feel safe here.

My Beef With the GAPS Diet Author—a Post So Major That It Probably Should Have Subheadings

Posted on by findingmykid
31

When I blogged about Martin doing well on the GAPS diet, the brainchild of Dr. Natasha Campbell-McBride, I wrote: “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.”

All this time, you’ve been wondering, What is it? What does Dr. Campbell-McBride say that my blogger doesn’t buy into?

(You’ve been wondering, right?)

Well, it’s time for that post I’ve been working on.

I’m vegan. I went vegetarian when I was 16 years old, and vegan just after I turned 22. I did it out of concern for animals and the environment, and I stuck with it for the health benefits. I’m 42 now, so that makes me vegan more than two decades. All in all, I feel . . . fit. I am 5’6”, I fluctuate from 125 to 137 pounds. I exercise. I have strength and endurance levels at least commensurate with my age. The two major illnesses I’ve suffered, measles at age 12 and dysentery at age 21, both occurred before I became vegan (and were unrelated to nutrition, as far as I can tell).

I was surprised to discover that Dr. Campbell-McBride, in her book Gut and Psychology Syndrome: Natural Treatment for Autism, ADHD/ADD, Dyslexia, Dyspraxia, Depression and Schizophrenia, writes off veganism as incompatible with long-term health, without explanation. She says that veganism is unhealthy and moves on. I figured that Dr. Campbell-McBride must have more than nothing to back up her opinion of veganism, so I headed for her website and blog. I found a post titled “Feeding Versus Cleansing,” dated 27 March 2012, in which she states, “Purely plant-based diets (vegan diets) are inappropriate for human physiology long-term; they can only be used as a temporary cleansing procedure.” (Disclaimer: I started writing this post in July. I know, I know—it took me a while. Life gets in the way. When I finally got around to publishing my post, I discovered that Dr. Campbell-McBride’s 27 March 2012 post had been removed and replaced with a recycled version, by the same title, dated 15 August 2014. The two posts make the same points; for wording and quotes, I am relying on the 27 March 2012 version. I have it printed out and can post it if anyone is interested in the original.) According to Dr. Campbell-McBride, plant foods cleanse, but by and large, they do not feed/nourish humans. A vegan diet benefits, say, a cancer patient whose body needs cleansing and resetting. Ultimately, the patient, like all humans, must return to eating animal products in order to be fed properly.

Okay.

As I see the issue, Dr. Campbell-McBride makes statements about veganism that sound good in theory but seem unsupportable in evidence. I have read multiple studies concluding, based on evidence, that long-term veganism—lifelong veganism, not a temporary or “cleansing” procedure—when done properly (not, for example, cola and potato chips) makes a person healthier, blocks disease, and adds years to life. The China Study is perhaps the best-known assessment of why veganism works. Dr. Campbell-McBride does not offer any study to counter those empirical conclusions. Indeed, other than one bizarre example asserting that a young woman ate a healthy vegan diet but nonetheless stopped menstruating and wasted away, Dr. Campbell-McBride doesn’t provide even specific examples. She writes assertively about body processes. She doesn’t back her assertions up with evidence.

(Here, I can even provide Dr. Campbell-McBride with a counter-argument: Do the studies on which I rely compare vegans, who tend to be health-conscious and food-aware, with meat eaters in general? Because “meat eater” is the default position in most Western societies, and the average Western eater tends to rely on processed junk instead of real, fresh food. So maybe the key difference in studies of veganism is between “conscientious” eaters and “if it tastes okay, it’s going in” eaters? I would appreciate a study comparing conscientious vegans with conscientious meat eaters. Scientists, have at it!)

I try to be open-minded. If I were to ignore the studies evincing that long-term veganism is the healthiest choice, I could accept Dr. Campbell-McBride’s claims about animal flesh feeding and building humans. Like I said, her statements sound good in theory. But even if I give her credit for the meat argument, she parts even from common sense with this argument: “Mother Nature took billions of years to design the human body; it is an incredibly intelligent creation! As the natural foods on this planet have been designed during the same time, your inner body intelligence knows their composition, and knows what foods to choose for particular needs.” These natural foods that the body requires include “dairy on a daily basis.”

How could it be that a human’s inner body intelligence knows to choose dairy? Milk is indeed a natural food designed by nature over billions of years—designed for a growing calf. That’s right. Cow’s milk has the exact balance of nutrients and proteins that a baby cow needs to grow big. Human milk, what we call breast milk, has the exact balance of nutrients and proteins that a baby human needs to grow big. Cow milk is for baby cows, not grown cows. Human milk is for baby humans, not grown humans. Humans are the only mammals forcing milk into themselves beyond infancy, and to add to this unnatural state they are using the milk of another species. What has that to do with nature? If I were ever to buy into more of the Campbell-McBride theories and start eating animal products (I have no plans to do this), I certainly would not include nature’s baby cow manna.

In addition to asserting that nature has made animals into the perfect food for humans, and apparently that cow milk does double duty as perfect for both calves and for humans of any age, Dr. Campbell-McBride appeals to the senses:

Mother Nature . . . gives us senses of SMELL, TASTE, DESIRE for a particular food and a sense of SATISFACTION after eating it. So, when your body needs a particular mix of nutrients, it will give you a desire for a particular food, which contains just that right mix; this particular food will smell divine to you, and you will feel satisfied after eating it.

And she writes:

[B]efore putting anything in your mouth smell it: [I]f it is the right food for you at the moment, it will smell very appealing. If it is not the right food, it will smell repulsive.

I feel fine now. So after reading Dr. Campbell-McBride’s work, I ask myself: If I eat animal products, could I revolutionize my life? Could I go from “fine” to “friggin’ awesome,” from “fit” to “Wonder Woman”? Could I break 200 pounds in my CrossFit deadlift? Out of curiosity, I’ve put Dr. Campbell-McBride’s “senses” and “body needs” theory to the test repeatedly. When I prepare meat for Martin, I stare at it. I take a deep whiff. I ask my body, “Do you need this? What is your desire?”

Then my body says, “Eeew, no.” Every time. Except when my body says, “What is that? Dead chicken? Back away, quick.”

My body doesn’t seem to be telling me to eat meat.

My own health notwithstanding, what about the fact that I bore a child who developed autism? Could my diet have contributed to Martin’s immune deficiencies?

I am willing, maybe too willing, to blame myself for my own missteps that I believe contributed to Martin’s autism. I’ve owned many of them, right here in this blog: Allowing Pitocin at Martin’s birth, which snowballed to an epidural and unplanned C-section. Not fighting hard enough when newborn Martin, despite an APGAR of 9/9, was whipped off to the NICU for antibiotics. Vaccinations. Living during pregnancy in a home under renovation. Et cetera. But try as I might, I have been unable to find any credible evidence, clinical or anecdotal, linking maternal veganism to autism. If any reader has evidence of such a link, don’t be afraid to forward it to me. I can take it.

I hope by now you’re asking yourself: If this blogger has concluded that some of Dr. Campbell-McBride’s assertions are unsupported, and even contrary to logic, why is the blogger’s son following Dr. Campbell-McBride’s signature GAPS diet? Here are my top three reasons:

  1. In my reading—and I’m no scientist—Dr. Campbell-McBride seems to have a better grasp on restoring a gut than on maintaining a body with a healthy, well-functioning gut. Her mistaken exuberance in carrying her “healing” theories to the “already healthy” realm doesn’t mean I have to assume that the “healing” theories are wrong.
  2. The GAPS diet is in line (not exactly, but some similar properties) with other restricted diets, such as the Specific Carbohydrate Diet or the Feingold diet, that help with gut-related auto-immune issues. I can’t find any widespread studies, i.e., real science, so I troll parent groups on-line for other parents’ experience. Most report improvement on these diets.
  3. I’m an empiricist. I’m giving the GAPS diet a try with Martin, and it seems to be helping his gut and overall functioning. Several years ago, when we cut gluten, soy, corn, and most starch from Martin’s diet (he already was dairy-free), I consulted a mainstream nutritionist and provided her with a week’s worth of menus. She confirmed that even on a very restricted diet we could meet Martin’s nutritional needs. I have some worry about long-term use of the GAPS diet—ammonia build-up, carnitine’s effects on the arteries, that sort of thing—but Martin will not be on the GAPS diet forever. When his gut is sealed up and in good working order, I will experiment with taking animal products back out of his diet. Already I have him down to one serving of meat per day, excluding broth.

In sum, although I plan to have Martin on the GAPS diet, or some modified version thereof, for the foreseeable future, I think Dr. Campbell-McBride is wrong about veganism. (As an aside, I also think that if the whole world started eating GAPS, the environmental consequences would drive us to extinction quicker than we’d like.) My argument having been made, allow me to end with perhaps my favorite statement from Dr. Campbell-McBride’s blog post, at least as pertains to me:

In the clinical practice we see the degeneration of the brain function in people on purely vegan diets and other poor diets: first the sense of humour goes, the person becomes ‘black-and-white’ in [his or her] thinking and behaviours, the sharpness of the mind goes, memory suffers, depression sets in and other mental problems follow. These are all the signs of a starving brain.

Oh, dear. You know now that I’ve been vegan more than 20 years. Is Dr. Campbell-McBride’s parade of degenerative conditions knocking at my door? Adrian, my husband, does complain that my sense of humor tends toward the “Teutonic.” That, however, is not my diet’s fault. Blame the genes: I actually am German. I’m rarely accused of black-and-white thinking; it’s hard to believe that a black-and-white vegan could support a son on the GAPS diet. As for sharpness of the mind, you readers are inside my head, almost daily at this point. How do things look in there? Dull, or sharp? Memory—meh, it’s not fabulous. But I am in my 40s and, more often than not, sleep-deprived.

That brings us to depression and “other mental problems.” Maybe the greatest testament to my brain’s fitness is that—despite having a child with autism, and the daily grind to recover him, and all that we’ve given up to make recovery possible—I am not depressed. I am optimistic and hopeful. Heck, isn’t that a bitty miracle? And if you’re wondering if I have other mental problems, go ahead and ask Adrian. He probably knows me best at this point.

No, wait. Do not ask Adrian about my mental problems. I have a feeling that is not a good exercise within any marriage. Just trust me instead. I promise, I’m reasonably sound.

Reasonably.

I promise.

The kid eats meat. Me? Not so much.

The kid eats meat. Me? Not so much.

All of a Sudden, a Whole Bunch More Happens

Posted on by findingmykid
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I have a lengthy post prepared on “my beef with the GAPS Diet author.” It’s all ready to go. But—

Shelving that post! At least for today. Because I must, must, must tell you about what else Martin did this weekend.

  • Saturday evening, back at O’Hare to fly home, we saw another family, with a boy about Martin’s age, boarding our flight. The boy was pulling a Cars-themed roller-board. Unprompted, Martin strolled up to the boy and asked, “Did you bring your own suitcase?”
  • Martin didn’t get to bed until almost midnight Saturday night, so I thought that getting up Sunday morning would be a real problem. It was not. When I entered his bedroom to wake him, I reminded him that it was Sunday and he was going to sing with the kids’ chorus at church. He came to life with excitement. “I’m going to sing with the kids’ chorus!” Then he did it. He sang with the kids’ chorus, three songs. He was too excited and bounced around a little. But he sang and clapped and stayed in more or less one spot, without so much as a point or prod from me. I sat in the front pew and recorded the event.
  • Also at church, during kids’ time, Martin sat on my lap in the circle with the other kids. When he got fidgety, I asked, “Would you like to go sit with Vincent?”, meaning another boy across the circle. Martin nodded yes (nodded!) and scooted to Vincent. Then, instead of just sidling up, Martin asked, “Vincent, may I sit next to you?” Vincent paused for a second—a very long second, for me—then he smiled and nodded. They sat together the rest of circle time.
  • Sunday afternoon, we went to visit friends in another town who have a three-year-old, Sebastian. After some initial shyness, and then goofiness, Martin trotted off to Sebastian’s room, and the two boys played together, interactively, for two hours. They sat at a little table and took turns with different objects, and took turns complaining when each thought the other wasn’t sharing. When I called from the kitchen, “Martin, what are you doing in there?”, he answered, “Me and Sebastian are making apple pie,” and then added, “Well, we’re pretending to make apple pie.” Sebastian is, granted, only three. Nevertheless, the interaction was so significant that Adrian said, “What is this? What’s going on? I’ve never seen this before.”
  • Sunday evening we accompanied the same friends to a jack-o’-lantern display. Martin and Sebastian wore their Halloween costumes (an astronaut and a dinosaur, respectively) and chose to hold hands as they walked.

This evening, Tuesday, I had dinner with the parents of another special-needs child. I told them excitedly about the events described above. One of these parents said, “That’s the thing about special needs. What might sound like nothing to another parent is amazing to us.”

Nailed it.

All of a Sudden, It Happens

Posted on by findingmykid
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Martin and I are on a flight to Chicago, to see Dr. Zelinsky. Two things happened in the airport:

First, the metal detector. I have my qualms about the effects of metal detectors, but I let Martin pass through them. It’s a nod to convenience, I suppose. Plus, at least it’s not one of those x-ray body-scan machines. I have even more qualms about them. Passing through the metal detector used to be a challenge for Martin. He might be scared, or refuse. When he agreed to pass through, he rarely succeeded without setting the machine off by touching its sides—either he clumsily bumped them, or his hands naturally flew apart for sensory input and balance. After one or two tries, the TSA agent would let me walk though with Martin, picking him up or holding his arms down and his body steady.

Today as we approached the metal detector, I lined Martin up and said, “Walk though carefully! Don’t touch the sides!” To my surprise, Martin stood ramrod straight, pasted his arms to his hips, and walked directly though the machine. Then he iced the cake: On the other side, instead of wandering away, he stopped and waited for me.

Second, the Windy City. As we sat at our gate, Martin watched the information screen and asked questions. “What does that number mean?” “Is that a picture of our airplane?” At some point, he looked at the destination name and said, “Chicago is the Windy City.” I couldn’t remember ever having told Martin that Chicago is called the Windy City, so I asked, “How do you know that?” Martin replied, “Because my daddy told me.”

What’s the breakdown? On and off for months, I have tried to get Martin to understand the question, “How do you know that?” If we are driving and he says, “That’s a hotel,” I ask, “How do you know that?”, trying to prompt him to say that he saw the sign or read H-O-T-E-L. Instead, he responds, “But-because it is.” If he makes an assertion beyond his experience, like, “All kids except me eat popcorn!”, I say, “How could you know that?” He responds, “But-because they do.”

This morning was no such exercise. I wondered how Martin knew Chicago’s nickname, and I asked without thinking about whether he could answer. His perfect response, missing even his trademark “but-because,” surprised me a second time.

Two big successes inside ten minutes! Still, you know me: I must always temper my enthusiasm. While we were waiting in the jet bridge, another passenger saw our seat numbers and remarked kindly, to Martin, that we were all sitting in the same row. This prompted Martin to ask me whether our row had three seats together, or two. When I told him that our row had three seats together, and that someone would sit next to us, he had a little meltdown and yelled, “I’m not ever going to sit in two seats again! Not ever!” He was crying as we entered the plane.

Did I mention the two successes?

ASD Recovery Recipe: Goldfish Crackers

Posted on by findingmykid
9

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.”

photo-7

Yeah, That’ll Give Me a Good Night’s Sleep

Posted on by findingmykid
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Yesterday evening, Martin had another real phone conversation with Adrian. “Are you still at the office, Daddy? Are you coming home? When do you think you’ll come? I’m good. I’m drawing pictures with Mommy. Okay. ’Bye.”

Last night, as he was floating to Sleepyville, Adrian mumbled, “These last sixty days or so, it’s so different. He’s like a new kid.”

I’ll take it.

Empowered Moms

Posted on by findingmykid
11

These days I don’t feel so empowered, at least not on a macro-scale. I feel good about what I can do, what I am doing, for Martin. I am pleased to see other biomed moms banding together and trying to provoke change—see, e.g., The Thinking Moms Revolution or The Canary Party. I am grateful that other biomed moms create on-line forums and Facebook groups in which I can participate. As for me, my own engagement in collective action is on hold, not really in the realm of “what I think I can handle right now.” I need to recover Martin. Then I’ll change the world.

That all being said, recently I have joined together with two local special-needs moms (not biomed) to get something done. Actually get something done! Last summer, we were lamenting that our kids don’t have much way to make friends, and practice keeping them, here in our small town. When we make play dates for our kids, they engage in parallel play more than interactive play. There are professional resources available, like the play program that Martin attends (and adores) in the City. Unfortunately, those programs draw participants from a wide geographic swath, making after-school or casual get-togethers impracticable for the kids, and the cost excludes many families.

We three moms decided that what our town needs are facilitated social-skills playgroups for special-education students. And then we decided that, if the need is to be filled—we’re on deck. We formed a playgroup of six kids, grades kindergarten-through-second (ours kids plus three more, none in the same school class); hired a facilitator (a master’s student in elementary special education); found a time that works (late Friday afternoon); and got started, rotating each week among the participants’ homes. The facilitator comes prepared with games and exercises designed to foster social skills like sharing, taking turns, greeting, and getting to know each other.

By the fourth meeting Martin had fallen in love with his new playgroup. He calls his fellow participants “my friends from town.” All week he looks forward to Friday. He talks about whose home we’ll be visiting that week; one morning, he even created his own “Friday play date” schedule, listing out each child and checking off the retrospective house. He asks questions about what his “friends from town” do on the other afternoons. He wants to join them.

When the other moms reported similar enthusiasm from their kids, we knew we were onto something. We put together a formal proposal to bring the social-skills playgroup under the auspices of the local special-education parent-teacher association, which would both help defray the facilitator’s fees and also publicize to other parents who might be interested. Then we coordinated with a local Girl Scouts troop whose young women are interested in working with special-needs kids. As part of seeking their Silver Awards, several Scouts are going to come each week and assist our playgroup facilitator with keeping the kids focused.

Getting this project up and running, when so much else is on our shoulders, feels like a big achievement. We were correct that our town needs social-skills playgroups. As of this writing, enough parents have contacted us that we will be able to fill two additional six-member playgroups when we start our spring term next February.

Yay for moms, making stuff happen.

Chatty

Posted on by findingmykid
5

Let me begin this post by stating that nothing written here is intended to make fun of Martin. This is a post about language, oral stimming, perseveration, and behaviors that, for the most part, are not within Martin’s control. Although some of the verbal stream I’m conveying may, in retrospect, come across as amusing, when this is happening—when Martin is saying these things, nonstop—nothing sounds funny. When Martin is saying these things, nonstop, I could never laugh because I am too busy trying to keep my head from exploding.

Martin has been talking a blue streak this week. I’ve written about this phenomenon before, when Martin starts speaking and cannot stop. It happens most in the morning. It used to be that Martin would repeat one statement, or one statement and several variations on that statement. As his language and other skills have improved, he’s broadened the repertoire. Now when he can’t stop talking, he cycles through many familiar topics.

During breakfast one morning this week, when Martin and I were alone in the kitchen, I tried to capture his monologue. (I call it a monologue because I seldom interjected. I struggle with deciding to what I should respond, especially when Martin wants attention more than an answer.) Through a combination of recording, scribbling, and recalling after-the-fact, I was able to transcribe the following. This is not verbatim, I’m sure, but it’s close:

When I grow up I am going to live by myself. I don’t want to have any roommates. I am going to be a man who has horns. I am going to have long hair. Mommy, when I grow up I am going to eat peanut butter Lära bars. Do they still play concerts in Central Park? Can we go there? I want to go there. I’m not going to school today. Is it your birthday? Mommy, whose birthday is it? Your brother Rudy and your niece Mandy have the same birthday. How old did Uncle Rudy turn on his birthday? Mommy, Uncle Rudy turned 47 and my cousin Mandy turned six. Mommy, how old are you? You are 42 years old. Do all kids have middle names? Do you have to practice to be a crucifer? I’m going to be a crucifer when I’m in middle school. I’m never going to be a crucifer. I’m never going to school again. You should move out. Go! I’m going to live alone. I want you to be my mommy forever. Is Daddy going to keep going to work? When you were with Miss Cara and Miss Eileen and Miss Tomomi during my play date, what did you do? I want your family to have another baby. Are many of my friends only children? Are all of them? In the eighth picture about the fireplace, are you holding me when I’m a baby? When you were a child, was it allowed for children to ride in the passenger seat? You married your husband in 2005.

Martin said all this, almost without pause, as he was sitting at the kitchen table drinking (or, as it were, not drinking) his bone broth. I’m never quite sure what sets Martin to nonstop talking, or whether a monologue like this is oral stimming, perseveration, attention-seeking behavior, anxiety, or some combination thereof. I’m frustrated when this happens, to be sure. I survive by focusing on Martin’s language skills. Do you remember when I was overjoyed that he managed to say, “I want you to do that again”? Compare that with the perfect sentences structures Martin rattled off this week. Those sentences were perseveration, and he could not slow down, but at least he had the words.

At least he had the words.

Good Medical Care

Posted on by findingmykid
1

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.]