Schoolbuses, Neuroplasticity, and Really Large Hamburgers

September 13, 2010

Dear Family,

I am about to tell you something that's so simple, so very humdrum, that you may just reflexively yawn:

Last weekend, I ate my first hamburger.

Our meat sources are local, very humane farmers who feed their animals exclusively grass. The taste of this meat is not bad (some would say it's fantastic). The texture is chewy, but manageable. But the visceral, non-rational, Pavlovian part of my brain gets pretty damn tense sometimes. “NOOO!” I wanted to scream, readying the gobs of ground meat for the frying pan. “I CANNOT DO THIS!”

Dunno why the hamburgers freaked me out so much. I've been eating beef several times a week for over five months now, and if I can do that, why not snails or crickets or squid or goat testicles, let alone more cow in the shape of a patty?? But somehow, preparing the burgers just turned my stomach. I brought them to the table, trying to squeeze back tears, especially so Ben wouldn't see. Not that it really mattered: “I am _never_ eating that,” he informed me. “Never.”

“No one will make you,” I said, tightly. And then, feigning lightness, “I'm just grateful to this cow, and to all the animals we're eating that are helping to make you, and all of us, healthy...” I do believe this, very strongly, but sometimes only on an intellectual level. Frustrated at Ben's revulsion, and annoyed at my own salty tears, I momentarily hit rock bottom. Sometimes when I'm eating meat, it feels like the foundation has fallen out of my world.

And then I took a bite of the burger. And Ben had sauerkraut for dinner. And Jeff said, “Yum!” And Jem took a wide-eyed look at his hamburger, and swallowed a large, appreciative bite, and exclaimed, “Mama! _Where_ did you get this?!”

...This, my boy, is a hamburger. Got the meat from the Co-op, and they got it from RK Farms. This, my son, is the most complicated, simple hunk of meat I have yet prepared for you.

May you, Jem, enjoy this All-American burger with the simple, primal happiness of a hungry person eating good food.

May the memory of the animal who gave its life for us, be blessed. May you grow strong and healthy on its flesh, and may you understand and learn how to feed your body well. May you enjoy your brief time here on earth, my sons, eating (as much as possible) like two humans who come from a long line of humans who have been satisfying their hunger for millennia with large hunks of meat, whenever they could get them.



When I get discouraged with the pace of Ben's progress on the GAPS diet, I try to remember how much better he's gotten in only five months. Back in March, his health (especially the neurological stuff, and the intense anxiety, and the gastro symptoms) was going downhill. Fast.

Now, things are shifting. His stomach is better. His social anxiety is _way_ better, along with his cognition and verbal skills. He goes outside _alone_ almost every day. And every so often, maybe every few weeks, he does something or says something profoundly _different_, that reminds me of who he will be when his anxiety is mostly gone...These are near-miracles, which I hold on to.

Oh, but his intensity is so hard sometimes, his screaming is so piercing and angry and wild, and I get so drained each time the chaos in his head turns him into an especially demanding, overwhelming caricature of my son. Sometimes, I wish a hopeless wish with every fiber of my being: to make his Hard Stuff go away with a blink of my magic wand.

In time--if he and we can stick with this diet--I'm pretty certain that his life will be WAY better and easier than it is now. I have to believe this, even though I know it's not a good idea to have such expectations for the future.

But how the hell do you look at this situation Buddistly?? I mean, I need to love my son (with all his presently-existing anxiety attacks) and my family and myself without reservations, in the moment; and at the same time, accepting what's going on means _actively_ trying to reduce or eliminate the existence of the anxiety and ill-health that we're currently experiencing. This really feels like a paradox.

And this is when I wish I could believe in some sort of God. Because although believing in GAPS makes a lot more intellectual sense, there are a lot of not-yet-known, non-linear aspects of healing and human digestion and health, and anyway, God gives some people such solace. Especially when I am experiencing a hormonally-charged, PMS sort of a day, I would really, really like some of what those solace-filled people are having.

There's an amazing woman who writes to the internet support group that I read sometimes. She and her husband have a son (youngest of their five kids) who was nine when they started GAPS. Up till this point, he was profoundly disabled, autistic, non-verbal, violent, and unable, she's written, to make progress despite years of traditional therapies.

This woman did GAPS with her son for a full year before she saw him make noticeable progress. And yet, all through those twelve months, she and her husband tried to keep such faith in HIM--this is the part that inspires me. She writes that sometimes, even when he'd be raging at his parents physically, throwing horrible tantrums, they would tell him, We Love You. You're Going to Be Okay. This Diet Will Help You. We're Going to Help You Do Everything You Dream of Doing. You are Going To Make It, And You Will Be Happier Than You've Ever Been.

This is the crazy part: it's five years later, and now this formerly- “incurable” boy attends regular high school at his age/grade level, is active in the drama club and extracurricular activities, and no longer has an “Autism” or “Aspergers” diagnosis of any kind. Recently, this fourteen-year-old told his mom that even if he has to eat a restrictive diet forever, it will be “worth it,” because he has such a “wonderful life.”

This, much more than the hamburger incident, makes me cry. I want to keep this faith similarly, for Ben. I want to have the strength to tell him (and really believe), even when he's “throwing a temper tantrum,” or “acting out,” or “being rude,” that I understand--that I know he's not doing it on purpose--that I can help him--and especially, that I won't crack under the pressure, as long as it takes.

It's really hard not to let this desire to believe in him get mixed up with wanting to control his life--or to let my own head get consumed by the Possibilities that exist only in a not-yet-manifested future. And oh my goodness, I am really tired...


I took some more notes during my second therapy session:

“It's natural to feel overwhelmed and exhausted—but I can make a choice not to get caught up in it.”

“Take regular breaks, to focus on something other than kids.”

“Recognize the roller coaster that's happening, notice that there's fallout from stresses. But don't let my sense of well-being depend on the happiness of my children.”

“Check-in with myself– where's the anxiety coming from in my body? Identify where. Notice what can make is consciously lessen.”

“Don't let the 'I'm freaking out!' brain waves welcome in my own anxiety.”

“Children have to walk in their own shoes. Ben has his own challenges--I can honor and respect these, and yet not take it on that this is all my fault and/or responsibility.”

“Share FUN—connect with my kids in ways that are fun for ALL.”

Well gosh--seems like, even if I can't take my own advice, I should at least start writing a lucrative self-help book. (Who says that authors have to actually _be_ enlightened to write about enlightenment??)


Last week, after reading my update, Jeff said something to the effect that I was overgeneralizing when I wrote that I know virtually _nobody_ who is “truly healthy.” To illustrate his point, Jeff showed me a video he found, noting that these guys seem pretty healthy:

(I can't help but note that issues involving carbohydrate metabolism aren't _always_ visible to the untrained eye.)

(But this is a really cool video.)


A school bus driver, obviously new to his route, slowed next to me while I was out walking this morning. He rolled down his window, and said something about a “bus.”

“Uuhhh?” I said.

“Goin' to the high school?” he asked. And then, when I still looked confused, “Do you take the bus?”

And that's when I realized: he'd mistaken me for just another teenage passenger, bound for First Period. “No!” I said. “I don't - thanks.” He pulled away, driving his youthful cargo down into town. And I felt suddenly bouncy and free, because hard as parenting can be sometimes, I _never_ have to catch a bus to school at 7:00 in the morning.


Out of the Mouth of a Babe (Jemmerisms):

Jem is practicing his “J”s. It sounds like of like he's saying “ZJem,” and “ZJump,” and yesterday he kept repeating the title of a book over and over: “One Was Zjohnny...One Was Zjohnny...One Was Zjohnny...”

When I was outside the other day, trying to get Ben's attention without having to walk all the way up the stairs again, Jem informed me: “You need to yell REALLY loud.” Later, he showed me how it's done: Ben was outside, and Jem was calling him in, and his shout was much more like a bellow than anything else. “BEN!” he bellowed. “IT'S _WUNCHTIME!_”

Jem wanted a toilet paper tube the other day, so that he could hoot into it like an owl. He set to work with tape and paper, and rolled and cut and taped until he finally told me, “Now! My 'Hooooing' thing is done.”

Referring to a large thistle: “There! Over there is more of that owchy stuff.”

There has been a lot of craftyness happening in this house lately. Jeff and Ben have perfected the design of a rubber-band-powered rocket that is made entirely from cardstock, masking tape, a paper clip, and a small piece of foam cut from an old pool noodle. (These fly at least a hundred feet into the air, very impressively, when launched with a chopstick and a rubber band.) Jem has been getting into it too, and spent over an hour the other night constructing his own rocket from layer upon layer upon layer of blue masking tape. Finally, his bulbous, tape-encrusted toy was ready. “My rocket is DONE!” said Jem happily. “But...I can't shoot it,” he noted, discovering that he'd taped over his paper clip, “because I don't know where my hook is.”

Yesterday, Jeff watched an episode of “Life of Mammals” with the boys. Jem was very interested in the monkeys. “Do monkeys have penises?” he asked me later. Yup, I told him, the male ones do. Jem thought for a minute, and then noted the following fact concerning movie production prudery: “They don't show them much.”

“Mama's a great wiper!” Jem informed Jeff yesterday. (Finally! Some appreciation for all these years of attention to my child's behind.) A few minutes later, Jem told me, “You're a great nurser!” Hey thanks, I said. You are too! “But I don't nurse you—you nurse _me_,” Jem pointed out. Well, you can say that you're a nurser too, I told him. “...I want breasts,” he continued thoughtfully. “What would happen then? ...Then I _could_ nurse you,” he decided. Yup, I said, I guess you could. “An' what if Papa had breasts, and Ben had breasts?” Uh, I dunno, I said. What would happen? “Then,” said my little prince, “Papa could have a baby and nurse it, and Ben could have a baby and nurse it, and then you could have ME.”



“Is twelve an' a half a quarter of fifty?”

“How many would be five thousand rockets?” Ben asked. “Would it fill the house?” You mean the paper ones you make with Papa? I asked him. Maybe... “Would a _googleplex_ rockets fill the house?” Then Ben answered his own question: “There's not even that many molecules in the world, so that many rockets would _definitely_ fill it...”

Tis the season to pop the pods of Jewelweed. Ben is totally fascinated. “I think how they pop is because they have gores,” Ben pointed out, “like hot air balloons.” Why yes, Ben, I think you're right, I said, amazed that he could see that: the similar geometry between the pods and the balloons, the bulbous, fleshy seeds and the tissue-paper flying machines he constructed with Jeff last spring.

Last night, I nearly cried with nostalgia: I started reading “Little House in the Big Woods” to Ben. Now that I'm a parent, I'm noticing things that I didn't pick up on the first five times I read this series. 1. They talk about guns an _awful_ lot. 2. They discuss foods containing refined carbohydrates much more often than I wish to mention them. 3. The family was very puritanical in some ways! I'm skipping some of the passages. We'll get to them soon enough, if we read the books through again for Jem someday...

The other day, Ben was having some pretty serious anxiety. But here's something he didn't used to be able to do in the middle of such stress: do math. “Two an' a half is half of five,” Ben told me, fretfully. “An' three an' a half is half of seven. Two sevens are fifteen... An' two sixties are one hundred and twenty.” He kind of half-smiled, through his intensity, and I could see: my baby's in there, hiding behind his mathematics.


The GAPS diet… outlines the clearest hypothesis I've encountered, thus far, for why Ben's brain has become as “fogged” as it has over the past 6.5 years, and it presents the most workable protocol I've encountered for detoxifying his small body.

However: Natasha Campbell-McBride, author of “Gut and Psychology Syndrome,” says that patients generally need to adhere to the dietary protocol strictly for at least 2-3 years for significant healing to occur. And I can say, after five months, that in some ways 2013 feels slightly far away.

So we've found something, sort of like low-key, holistic Occupational Therapy, that we're trying with Ben. The goal: understanding what's going on right now, while his brain is still fogged, and how we can help him feel better more efficiently, even while his body is working toward greater detoxification.

Katie, a HANDLE practitioner, spent two days with us last month to design a program for Ben. The acronym stands for “Holistic Approach to Neurological Development and Learning Efficiency.” Through an intensive evaluation, Katie was observing how his body and brain do or don't work together, and attempting to understand the underlying irregularities in his neurological development and processing. (The way the brain processes its various streams of input is how, ultimately, a person can unconsciously decide whether a situation feels safe or not. This is why it's so important: if you don't feel safe, you cannot feel good.)

For example: a layperson like myself might look at Ben and say that his primary gut-dysbiosis-induced “problems” are anxiety, and speech issues and physical tics, and rude/obsessive behavior and screaming fits. HANDLE says: these are compensatory behaviors (symptoms, not a pathological all on their own), and that the body is actually doing exactly what it _should_ be doing, based on the stresses it is experiencing due to his fogged-up brain (my unscientific terminology).

From their website: “HANDLE prefers the the term 'differences' rather than 'disorders,' in celebration of neurodiversity and the uniqueness of individuals. However, HANDLE acknowledges mainstream labels and diagnoses as a form of shorthand to describe clusters of symptomatic behaviors. “

So: HANDLE feels like a way that Jeff and I (and potentially Ben) can start to understand: when Ben is really anxious, or lashing out verbally, or unable to be rational at all, this is not because he's “badly behaved,” or “trying to manipulate us,” - but because his systems are stressed, and some of the ways that his brain processes input are irregular--and thus he can end up feeling really terrible at times. And since he's still just six and a half years old, he doesn't know what to do about all this.

For example: his vestibular functions, and senses of proprioception and tactility, are Ben's prime irregularities. This means that the ways that Ben's brain processes movement, and touch, and taste, and the sense of where he is in space, are different than the ways that people generally process these things. This “processing” is a non-conscious act for most of us, and is a natural result of human activities and development; and the ways that we do or don't process such input affects things like human communication, motor skills, visual/auditory comprehension, etc.

Differences in brain processing are not necessarily BAD. But they can make the most basic tasks, like picking up a pencil, less efficient and literally more physically taxing than they are for most people.

It's actually fascinating to start understanding why certain activities and situations have always been hard for Ben. (Many things are a lot less hard now than before we started GAPS, but still there's plenty of “hard” that exists right along with his apparently still very active Candida.) His senses of smells and taste are hyper-acute, for example, and when his body is, say, irregularly processing proprioceptive input (which could certainly make a person feel antsy, to not-quite-feel-sure of where their body is in space), then he relies on these other two senses to the extreme, to prevent his fight or flight instincts from taking over.

This is the basic idea: we _all_ want to feel safe, and our brains will do what it takes, if at all possible. A noticeable manifestation: he smells everything he picks up, and then over and over, to help make up for the input he's not getting normally from his other senses.

In many ways, these compensatory activities can be tiring. The way he moves, for example, to prevent his head tipping in a certain way, or the way that he reaches for something, using his whole body instead of just his arm. Infants and tiny children usually go through these stages naturally, as their bodies gradually learn to move more efficiently through the daily routine. Kids (or adults) whose brains are “fogged”--or toxic, or blocked in some way from normal functioning--might never learn to do these things efficiently. Which can make daily life very exhausting. And being tired all the time can put a person on edge, to say the least...

These ideas makes sense to me. Instead of traditional therapies, which often try to treat the symptoms of poor visual/spatial integration, say, or problems with oral expressive language or auditory sequencing, HANDLE consists of gentle activities that (we hope!) will stimulate the most basic senses of the body's most basic Processing. The idea is, of course, that if we can make these processes work in a more regular way, then the issues that underly the anxiety and screaming fits, etc., will improve. And then, as the brain detoxifies and receives consistent and helpful nudges to enhance neuroplasticity, the screaming and anxiety will lessen.

It's been two weeks. So far, Ben likes the massages and games, and it's good to be doing something with him that doesn't involve food.


Athena and Sudip paid us a visit this past weekend. It was great to see them, and they settled right into our crazy household, and we hope they'll come back often and then have their wedding here in Ithaca next year (hint! hint! hint!)


And now... to get children to sleep. In case you're looking for some GAPS recipes, I've just started putting a few simple ones up on my website: :)