Week 11: Good problems?

Rawr!  I make you drink your probiotics!

We thought we had turned a corner with Logan, but again we’ve had two days of wiggles, flapping, odd noises, and defiance, which sort of dashed the small amount of hope I’d been feeling.  But an Atmosphere song played on the radio this morning, and I choked up, a few tears slipping down my cheeks as I drove to the bus stop and heard “these problems are the good ones to have …”

I didn’t get the job I’d tried so hard to get.  My kids both wailed practically nonstop last night for two hours and refused to eat.  I don’t know how I’ll ever find time (and money) to begin cooking sugar-free.  But I still have a job.  I have children.  And I have food.  These problems are the good ones to have.

So as we plan to dive into this diet fully, we’re thinking about several things.

1. Logan will no longer be able to eat anything provided by his daycare.  This means we will now have to make breakfast, lunch, and two snacks in advance to send with him each day.  This will also mean making and sending an additional snack for preschool, where he is bused every morning.
2. This, of course, will likely mean tears and tantrums when he doesn’t get to eat what the other kids do.  To say nothing of when a classmate brings in birthday treats.
3. To try to help this, we let him pick out his own lunch box and talked about how cool lunch boxes are, and that he’ll get to have it every day with his own super special food in it.  It worked with his probiotics—he’s now happy to drink them as long as they’re served in his green dinosaur-shaped cup.
4. Side note: When did lunch boxes become giant pieces of luggage?  We went to the store expecting to find a simple plastic box with rounded edges and a thermos inside, with maybe Mario or Superman on the front.  All I could find were soft, insulated contraptions that will take up half his backpack.
5. Good news: We learned that we can still bake desserts and other treats to send with Logan, like peanut butter cookies and cranberry gelatin—we just need to make them ourselves, with lakanto sweetener instead of sugar.
6. Bad news: 1 ½ pounds of lakanto costs $35; by contrast, $35 gets you 24 pounds of sugar.

It again starts to feel impossible and pointless.  But articles like this one from NPR help: http://www.npr.org/blogs/health/2013/11/18/244526773/gut-bacteria-might-guide-the-workings-of-our-minds (thank you Nick for sending it!)

I also especially need to thank Holly and Michael—their story of recovering their child from autism and their willingness to coach us through this mess has been inspirational and motivational for our family!  I am so happy this blog and circumstances have connected us.

Feeling: Emotional, from bad to good and back again 

Week 10: I touched chicken (and lived)

OK, it might not seem like a big accomplishment, but come on, raw chicken is gross.  So of course I could never have cooked it—I couldn’t have even touched it.  And it’s not just the chicken, even.  Cutting a tomato also feels so disgusting to me.  I grimace anytime I have to touch any wet, slimy, or gelatinous food.

Coming off a long and difficult week last week, I was lucky that a friend decided to take me grocery shopping and teach me how to cook a few GFCF meals.  She cooks gluten-free meals for her family and is just one of those friendly, helpful people you wish the world had more of.

She made me touch the chicken.  She cut (or cubed, or whatever—terminology is another annoying part about cooking to me) one chicken breast, then had me do a second.  It was awful.  I felt like my hand was glowing with salmonella germs.  But I did it.  She also showed me how to rip up and cook kale, which wasn’t awful to touch—but I, at least, thought was too awful to eat.

We cooked (fried?  Sautéed?) the chicken breast with garlic, onion powder, and pepper, and she showed me exactly how to tell when it was done.  Then we did much the same with ground beef, breaking it apart and seasoning it.  Then she showed me how to cut a tomato—so I had almost everything prepared for tacos that night.  The chicken we put in a container to save for the next night.  It’d be so easy, she said, so simply heat it up, make some instant rice, and throw the two together with some frozen vegetables.

And was she  ever right.  The next night, it turned out, I had to pick up the kids from daycare late, and my husband worked even later, so I found myself in the kitchen alone an hour after we usually eat.  The kids were hungry, pestering me for a snack, and, as usual, Sadie was pulling on my shirt to be picked up and the dog was jumping on my legs to be pet.  Thank God I had cooked chicken ahead of time; my friend was right, making instant rice was super easy, and I felt good about being able to put together a good meal (not that the kids ate much of it, of course).

So my cooking “lesson” with my friend taught me three things: first, that touching raw chicken won’t kill me; second, that cooking meat doesn’t have to be that difficult; and third, that preparing the main part of a meal ahead of time is very helpful.

Unfortunately, the last one still isn’t as enlightening as it sounds. I took a day off of work to shop and make meals this week; I really can’t afford to keep doing that.  Time is always my enemy.

When I was in college, I always told my boyfriend I wanted to learn to cook.  I never did, of course.  When I first married my husband, I told him I would learn to cook.  When I got pregnant, I told myself I would learn to cook before I had to actually feed the kid real food.  And now with no time … I wish I could go back in time and yell at my college self to actually learn something more applicable than commas and quotations.

Feeling: Tired

Week 9: Shakes all over

Last week, for the first time, I really felt as though I had an autistic child.

Which seems like a ludicrous thing to say, seeing as how I have had an autistic son for almost four years.  But Logan’s always simply been himself to me—maybe more difficult sometimes than others, and maybe more challenging than “normal” children, but still he was always just Logan.  Over the past two weeks, though, something changed, and I felt as though I was literally watching him regress in front of me.  Every day was worse.  Reports of aggressive behavior at school, screaming fits at school, defiance, refusal to follow directions … even aggression at home, purposely head-butting me or my husband, pushing his sister, stepping on our feet, screaming in our faces.  Everything was so different.

Toward the onset of this change (a short while after), we’d gone back on the GFCF diet.  And this time, in addition to eliminating casein and limiting gluten, we decided to commit to it fully.  And more than that, we’ve also eliminated sugar (or as much as possible) and added probiotics.

But not the yogurt you think of when you usually hear “probiotics.”  We bought a bottle of coconut kefir, which is water from raw young coconuts, and a jar of raw young coconut pulp, which comes with a warning, “open over a bowl.”  And they mean it—the live cultures inside cause a mini-explosion when you screw off the lid.

Every morning we use these, along with coconut milk and a dash of cocoa powder, to make Logan a probiotic shake.  I had to watch my husband do it three days in a row before I could make one without shaking myself.  I know it’s not exactly cooking, but it still feels like trying to speak Greek to me.

The CocoYo (the brand we bought) has over 25 billion cfu (colony forming units) live probiotics per 4 ounce serving, which is ton; in comparison, a regular yogurt cup might contain only a few million.  It’s not awful-tasting … but it’s different.  Logan drinks it, but he has to be coaxed to do so with getting to use a straw (or two).

We were warned that trying probiotics might result in worse behavior before improvements were seen as the yeast in Logan’s gut begins to die and work its way through his system.  Cravings for sugar, I’m sure, add to that.

My husband is confident Logan’s apparent regression is a positive sign, a sign that there is yeast in his gut dying.  I have to say I’m grateful for (and simultaneously jealous of) his stoic determination this past week.  While I’ve felt on the verge of collapsing for days—literally, my whole body physically hurts from shooting pains in my arm and constant headaches, and I can only imagine how awful Logan must feel—Jason seems so strong.  Which is really weird, considering he was the resistant one to try the GFCF diet for a long time.

But the weird thing is, this time around, GFCF actually seems easy (probably because the probiotics and eliminating sugar is now the bigger challenge).  I found GFCF substitutes for his daycare lunches and sent them all ahead of time in a big bag; we also learned we like using ghee rather than Earth Balance for butter.  Meals have somehow seemed easier to decide on, and yesterday—a week in—Logan was actually excited for his GFCF macaroni and cheese.  “It’s real mac n’ cheese!” he exclaimed.  My husband’s idea to melt the fake cheese in chicken broth worked.  That was a much-needed positive sign after a week of darkness.

Maybe it’s true that things seem darkest before the dawn.  I hope so.

Feeling: Sad.  Simply sad.

Week 8: CF and then some

After a couple weeks (OK, a month) of trying to ramp ourselves up for going casein-free again, we have finally officially gone back, full-force.  I saw evidence it had worked, Logan’s daycare teacher continued to tell us she was seeing a negative difference without it … but, first of all, my husband was not on board, second, I kept seeing articles trying to disprove GFCF pop up, and third, I was trying to again sort through the stress of working full-time job, desperately applying and interviewing for a new editing job, and muddling through homework.  Even thinking about trying to find time to rededicate myself to a CF diet made me want to cry.

But then something happened, as things tend to do.  Through a weird chain of events, I began talking with a woman who had brought her daughter off the autism spectrum.  Meaning off—completely.  No diagnosis anymore.  I asked her if she had done a GFCF diet, and she said yes—but that was just the beginning.

That’s almost an understatement.

Beyond GFCF, she said, you need to eliminate all sugar.  Candy.  Muffins.  Noodles.  Spaghetti sauce.  Smoothies.  Bananas.  Apples.  Anything with sugar, which feeds yeast in the gut.  The theory is that children with autism (at least, many children with autism) have an imbalance of bacteria in their intestines.  Normally, everyone has both good and bad bacteria in their gut that balance each other out.  But when the good bacteria disappear, yeast can grow, which causes both physical and behavioral problems (such as inappropriate laughter and aggression, which Logan has).  To kill off the yeast, the diet needs to exclude all sugar.  Once the yeast is gone, the good bacteria can be built back up (which is another process).

Of course, this is all theory—but this woman’s daughter, at least, is one proof.  My husband and I have dived into research, and we’ve found plenty of support out there for this theory.  So, with a renewed energy and encouragement from a new source, we decided to try it.

We completely went casein-free—we cleared shelves in our pantry and labeled them “OK for Logan” and “Off limits for Logan.”  I read over Logan’s daycare menu for the month and went back to the natural food store to stock up.

More so, we also tried to eliminate as many things with gluten, sugar, and soy as we could (if I thought CF was hard before, it’s going to be a nightmare now).  We won’t be able to rid our house of all sugar yet, but we’re phasing it out.  At least reduction is a good start.

Here’s to our new gluten-free, casein-free, and now sugar-free adventure!

Feeling: Re-energized (and simultaneously re-stressed)