Lessons Learned, Part II

I posted on Monday about lessons I’ve learned about following a year of autism and special diets, and after I hit “publish,” I realized I had forgotten two very important non-food lessons: Environmental toxins are especially bad for children with autism.  And they’re everywhere.

Research shows that a body with autism lacks the ability to detoxify as effectively as a neurotypical body.  There’s a long chain of reactions that happen in breaking down metals, plastics and chemicals and moving them out of the body, and I found this article by Dr. David Berger fascinating to read about it.  Basically, the body needs glutathione to detoxify, and Berger’s article cites research that demonstrates children with autism have lower levels of this compared to other children.

This, of course, would always be a problem for someone with autism.  But coupled with the other lesson I’ve learned, this is especially bad in today’s world because we put toxins in so many things.  For example, many hand soaps contain triclosan, a suspected carcinogenic.  Bed sheets are coated with formaldehyde, which leads to insomnia (among other problems).  Food is stored in plastic containers that leach chemicals.  Carpets, clothing, dishes, sunscreen–the list goes on and on.  In fact, the Chemical Abstracts Services website keeps track of every new chemical that is created, and currently there are more than 89 million listed.  Debra Lynn Dadd,  the author of Toxic Free, writes that in 2009, almost 500 billion pounds of chemicals were made in the United States.  “Yet there is no regulation that requires … health effects to be listed on the product label,” Dadd writes.

Since the Industrial Revolution, there has been an explosion of man-made chemicals.  Modern autopsies, Dadd writes, register roughly 212 chemicals that shouldn’t be there, including PCBs, styrene, dicholrobenzene, xylene and dioxins.  And compared to analysis of exhumed bodies of ancient Peruvians, lead levels in our bodies are 1,000 times greater today.  Any body will have a harder time detoxifying today thanks to the onslaught of chemicals around us.  For a body with autism, the load is all the more unbearable.

This, paired with our cultural dietary changes in the past century, makes it easy for me to see why autism rates have risen at such an alarming rate.  There’s more to detoxify, and there’s less nutritional help.

Chemical-free cleaning

  • 1 part apple cider vinegar
  • 1 part water

Instead of commercial cleaners, I try to use natural cleaners to try and reduce the toxic load on Logan and the rest of our family (this also follows suggests from TACA’s Autism Journey Blueprints).  I’ve also mentioned in this blog previously that I’ve changed all our dishware, and we will be putting in hardwood floors in at least our living room.  Ideally, I’d like to buy Logan an organic-fiber mattress and sheets, too.  I know they’re small changes, and I know my husband feels they’re mostly pointless.  Mainstream doctors are quick to point out there is no “real science” behind any of these theories or holistic approaches to autism.  But sometimes, small changes are all we can do.  And much of the time, big relief comes from the feeling that we are at least doing something.

Feeling: A little like a teardrop against a fire

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YEAR 1: 13 Lessons Learned

It’s hard to believe, but we have been on our biomedical path to recovery from autism for one year.  One year!  We’ve come a long way since deciding to try eliminating casein for three months.  To celebrate, I’m looking back on some lessons I’ve learned.  

  1. I will never be as tough or as trusting as my little boy.  Logan doggedly follows me as I ask him to eat this or that, always adapting even if his face clearly says he doesn’t want to.  But he does–and that’s why he’s my hero.
  2. Nothing feels as good as picking Logan up from daycare and hearing, “He had a GREAT day playing with his friends!” 
  3. I am stubborn–and that can be a good thing.  Die-off and doubts are hard to get through, but this approach to autism simply won’t work for a picky 3-year-old unless determination is taken to new heights.   
  4. “Quinoa” is now a word I can pronounce!
  5. Sometimes, it’s OK to spend all day Sunday cooking and freezing things for the week ahead.  Especially with two working parents.  
  6. And sometimes, it’s OK to have a messy house because of it. 
  7. Autism is impossible without family.  I couldn’t do this without my husband, the best cook in the world who’s also skeptically following my lead (by the way, happy 8th anniversary, love!).  Nor could we do it without my mom, who supports us in too many ways to count.  Having people to rely on–like my cousin Sue, who helped drive Logan to therapy appointments even while pregnant and with her own two kids in tow–makes all the difference.
  8. Cursing “What the f*@# is jicama!” when I see an unfamiliar ingredient in a recipe list does not help.  Googling “what the hell is jicama?” is more effective.
  9. Nothing inherently tastes good or bad.  You simply like what you’re used to.
  10. Eating 80% vegetables for supper eliminates almost all colds.
  11. Food (and our lifestyles) has changed drastically since World War II–I had no idea people didn’t always eat noodles for dinner four nights a week.  (I’m not being sarcastic here–this was a shock to me!)
  12. The link between autism and inner health is clear.
  13. I still hate cooking.

 

Feeling: Proud.  Incredulous. Stunned. Yet–I still have to admit, a bit disappointed.  After the setback of two weeks ago, Logan has been back to his wonderful self.  I do believe we’ve seen progress–but I expected, or really really hoped for, more.  Over the past year I’ve read multiple stories and met with a few families who have all recovered from autism.  I believe it’s possible — but I don’t believe we’re there yet, and I can’t help feel a little let down.  What did those families do differently?

Luckily, as I said, I’ve learned that I am as stubborn as stubborn gets.  So here’s to more progress in Year 2.

Week 52: Hope That Ebbs and Flows

“Hope Always,” my favorite T-shirt proclaims with swirly yellow letters.  It’s a mantra of TACA and many parents with autism–and a couple weeks ago, there actually seemed to be good reason for hope.  The New York Times Magazine published a long article titled “The Kids Who Beat Autism,” which claimed about 1 in 10 kids diagnosed with autism will actually shed autism symptoms and be considered “recovered.”  Other websites and blogs have suggested this, of course–but coming from The New York Times, it really felt legitimate.  There is hope.  Always.

A surge of joy, of renewed hope, filled me–then suddenly left.  I had to put my favorite shirt to the side in my drawer as Logan’s tongue erupted with tiny white bumps all over its surface, and his left eye turned pink and puffy once again.  His notebook was coming home filled with comments like, “Logan hit a teacher with a bike helmet” and “Logan pushed another child into the wall.”  I swallowed tears every time I dressed in the morning and saw those happy yellow letters on my shirt.  I couldn’t wear it.  I feared I might be out of hope.  

What happened?  Hadn’t we progressed at all in a year?  We’d had ups and downs, of course, but overall, I thought we were pretty much going in the right direction.  But as we drew just one week shy of a year on special diets, practically overnight things seemed to jump back to virtually the same as they were last August.  Aggression at school.  Skin problems (well, technically tongue problems).  Refusals to eat vegetables and new foods.  Even his eye, which has been great since tear duct surgery last October, was looking irritated once again.  (And how in the world could that be connected to autism?)  

The bumps on Logan’s tongue I’m pretty sure are transient lingual papillitis, or lie bumps.  They’re apparently not serious but can be painful–which Logan confirmed by crying when drinking anything acidic and by continually sticking his fingers in his mouth–and are supposedly caused by reactions to certain foods or gastrointestinal stress.  My husband believes the Super Green Vitality fermented powder I’ve been adding to Logan’s morning routine is too much and is causing all these issues.  I’m sure he’s right–but is this stress good stress, caused by yeast die-off (which we want)?  Or is it stress because his system simply can’t handle this potent supplement?  And why didn’t it “kick in,” so to speak, until about three weeks after starting it?

Regardless, we decided to stop adding in the green mixture to his shake on Saturday.  By Sunday, his eye was back to normal, and the lie bumps had mostly receded.  

Deep breath out.  Now, perhaps the aggression will recede, too.  Maybe focus can move in.  Dare I hope?

At this point, I don’t know what to think.  My initial goal, last August, was to be dairy-free for three months.  That stretched to include going gluten-free, then sugar-free–then adding probiotics, vitamins, omega-3s, and apple cider vinegar–for at least a year.  Now that a year’s about up, I’m devastated that I can’t even draw a conclusion one way or the other.  I’m heartbroken, I’m irate–and I’m completely baffled.

But at least I’m hoping–or thinking about hoping–again.

Of course, then I remember that despite my valiant efforts to learn to cook and make new, tasty foods that Logan can eat, I don’t think he’s liked one recipe I’ve tackled.  He’s reluctantly eaten some, like the quinoa meatloaf, but mostly he freaks out even when confronted with my latest attempt.  Which is further disheartening because supposedly going gluten-free is often hailed as something that helps children with autism become more flexible with food.  I thought was going to be true of Logan, too, since he embraced his kefir and kale, but that brief bit of open-mindedness has either stalled out or regressed.  Just another thing for me to feel sour about this week.

Lemon pudding (from The Candida Free Cookbook)

  • 3 cups cauliflower, chopped 
  • 1 cup almond milk (I used quinoa milk)
  • Stevia
  • 2 teaspoons vanilla extract
  • Zest from 1 large lemon
  • 1/4 cup fresh lemon juice
  1. Add cauliflower, milk, stevia, vanilla and zest to a medium saucepan.  Bring to a boil on medium-high heat, uncovered.
  2. Once it’s boiling, reduce heat to a simmer and cook uncovered for 5 to 7 minutes, or until cauliflower is very soft.  Remove from heat.
  3. Place mixture in food processor or blender and add lemon juice.  Blend on high for 1 minute or until very smooth.
  4. Allow to cool uncovered at room temperature.  Cover and refrigerate at least 18 hours.

To be honest, I haven’t even tried it yet; it’s been cooling in my fridge now for about 24 hours.  I’m frankly too depressed to try and take a bite, much less plead with Logan to try something new (or Jason and Sadie, for that matter–they keep inching further and further from the diet).  The good news is I don’t think it’s my lack of cooking skills anymore.  Of course, the bad news that suggests makes me think I should give up hope.  Always.

Feeling: Pitiful

Week 51: Renaming the Wolf

Since Logan’s diagnosis, my book journey has taken me from 10 Things Every Child With Autism Wishes You Knew to The Autism and ADHD Diet to M.F.K. Fisher’s How to Cook a Wolf.  Fisher, a contemporary of my great-grandmother, wrote bitingly about food in America during World War II.  The nation is grappling with rations and shortages, and the wolf scratching at everyone’s door is named hunger.

Unflinchingly, she quotes French philosopher Jean Anthelme Brillat-Savarin that “The destiny of nations depends upon what and how they eat.”  She blasts the (then, though now still applies) contemporary diet by saying:

“Where countless humans are herded together, as in military camps or schools or prisons, it is necessary to strike what is ironically called the happy medium.  In this case what kills the least number with the most ease is the chosen way.  And, in most cases, the happy medium, gastronomically, is known as the balanced diet.”

I keep trying to picture my great-grandmother saying something as cutting as Fisher.  She’d be sitting on her floral-print couch with her needlework in her lap and her chirping bird in its cage, maybe chatting with her neighbor (who would have come from a long way, seeing as how she was a farmwife in rural Minnesota): you know, those home magazines that preach a balanced diet are really just trying to kill the fewest people possible.

Clearly, Fisher was a woman ahead of her time.

Most of us aren’t hungry anymore.  We don’t have to worry about finding a sugar shortage at the supermarket or calculating how many dishes we can cook at once in the oven in order to save precious fuel.  The hunger wolf has retreated.

Yet Fisher’s quoting Brillat-Savarin on the fate of a country being linked to its diet is almost more relevant than ever.  There’s a new wolf at the door; a new threat arises from our basic quandary of how to feed ourselves.  For my family, that wolf is named autism.  For many others, the wolf is ADHD, Celiac’s, depression, diabetes … the list of modern maladies goes on and on.  Of course, there are dozens of theories as to what causes autism–and I’m not necessarily saying they’re wrong– but I believe (for what it’s worth) another of Brillat-Savarin’s quotes: “Tell me what you eat, and I will tell you what you are.”

As we say today, we are what we eat.  And we are a nation eating crap.

One of my favorite scoffs Fisher gives in How to Cook a Wolf is aimed at bread and our attitudes toward it.  “We still condone the stupid bread in this country,” she writes bluntly.  Wheat is refined until it is “not only tasteless but almost worthless nutritionally,” giving us white, sliced sandwich bread.

We must begin to ask, she demands, “why are we so ungastronomic as a nation?  Why do we let our millers rob the wheat of all its goodness, and then buy the wheat germ for one thousand times its value from druggists so that our children may be strong and healthy?”

I would add, why do we consistently remove nutrients from all our food in the pursuit of higher yields for lower costs, but then spend more on vitamins to replace that lost nutrition from food?  I bought Logan’s vitamins today — $50 — that really should be coming from the food we eat.  But even with our family’s healthy BEDROK diet, we still need to supplement.

Can we change the way we eat?  I’m haunted by the quote I began with, that the destiny of our nation depends on it.  Because now the wolf at my door–in fact, 1 in 68’s door–is named autism.

Feeling: I’d like to say sassy, like Fisher.  But simply assertive is likely more accurate.

This week the fair came to town! Logan and a friend from day treatment loved the car ride.

Week 50: Crumbling in the Kitchen

Welcome to dinner at my house. 

“Logan, stop waving your fork in the air.  You’ll poke someone in the eye with it.”

“Get that end out of your mouth–we don’t chew on silverware, we use it to eat–stop waving your fork in the air!”

“Logan, take a bite, now.  No, not with your fingers–“

“Sadie!  Get your spoon out of your milk!”

“No, Logan–stop waving your fork in the air!  You’re going to poke your sister’s eye out!”

“No, Sadie, you can’t sit on my lap–eat your vegetables.”

“Logan, take a bite of vegetables.”

And so on.  Doesn’t matter how many times we write down our Table Manners list or how many times Logan is reminded of Rule #1, which is “Listen to Mom, Dad, and teachers.”  Doesn’t matter how many times he is threatened with losing his video games or his cars.  “I will,” he says as he’s reminded of what he needs to do.  Five seconds later, he’s forgotten and is back to wiggling.  Dinners always feel to me like a raging tide rushing all around me as I shout directions to paddle our way out.  I swear, it seems like the only time I stop shouting and the waters turn calm is when I ask, “So, what was the best part of your day?”  Then a blank stare washes over Logan’s face, and for a few moments, he’s still, staring off at the horizon.

Eventually I get my iPad and set a timer for 25 minutes, which motivates him to some extent.  He knows he needs to clear his plate before the timer is up, or he does not get a dessert after dinner.  On multiple occasions he’s literally taken his last bite as the last second ticks to zero.  Most nights as he carries his plate to the sink, I take a deep breath and realize it feels as though I’ve been holding my breath for the past half hour.

Yet things are getting better.  Logan and Sadie are able to play independently for a short time after dinner now, which makes cleaning infinitely easier (that along with a new, working dishwasher).  Part of it is Logan’s new-found love for our pets; he’s always marching off to “go on a cat hunt.”

And he’s drinking his new breakfast shake with less and less fuss–though it’s giving me more and more headaches.  For the past few weeks I’ve been adding the Body Ecology Vitality Super Green–which is pulverized, fermented seaweed and other greens–to his coconut keifer drink each morning.  And almost every morning, it explodes on me, shooting out of the blender and coating the counter and my shirt in green smoothie.  

Logan’s explosive seaweed shake

This week I tried cooking wilted kale with onion, which tasted good although it seems like a lot of work for something Logan and I like to eat raw anyway.  I also attempted a new sweet treat, carob clusters from The Candida Free Cookbook:  

  •  1/4 cup coconut butter
  • 1 tbsp coconut oil
  • 1 tbsp carob powder (of course, I’d never heard of this, but I found it at the natural food store!)
  • 1 cup unsweetened shredded coconut
  • 1/4 cup ground flaxseed
  • Pinch of stevia

In a double boiler, melt coconut butter, oil, and carob powder. Once melted, add remaining ingredients and stir.  Drop into muffin cups and stick in the freezer to set.

The mixture seemed really crumbly in the pot, so I added some ghee to wet it, but it really didn’t help much–they still tended to fall apart even after freezing.  I also topped them with sunflower seeds, for fun (because apparently, the art of cooking is slowly emerging from the nightmare it used to be for me.  Hey, it only took a year.).  

My writers’ group, whom I hosted this week, assured me they were lovely.  I liked them, too, but Logan took one bite and definitively said, “no, thank you.”

I suppose if he’s not learning to like new foods, at least he’s learning to be polite.

Feeling: Crummy

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