Week 25: My turn …

As today is Ash Wednesday, the start of Lent, I’m thinking about what to give up for the next 40 days.  Brief disclaimer: I am not Catholic, but I do believe the act of periodic discipline is an important one recognized by many religions, and since I’d gotten in the habit of abstaining for Lent while growing up, it’s easy to continue.

Many people give up chocolate or sweets for Lent (hence the explosion of chocolate bunnies come Easter), and this year, I will be, too.  Of course, we’ve already given up gluten, casein, and sugar in our house for Logan’s diet, and the biggest question I always get is, “are you doing the diet, too?”

“Sort of,” is my usual reply.  To support Logan, we all eat GFCFSugarF meals at home, but when I eat lunch at work, I’ll grab a prepackaged (translation: sugar!) cup of soup and split a candy bar with a coworker.  Girl Scout cookie season also just ended, and it turned out to be my and my husband’s downfall: we bought and hid boxes of Thin Mints, Samoas, and Tag-Alongs in the highest kitchen cupboard, out of reach and out of sight for Logan and Sadie.  Now, after the kids are in bed and I’m cramming cookies in my mouth, I’m feeling guilty for even saying I’ve “sort of” given up sugar.  I just avoid it during the day and overdose at night.  And I feel like crap for it–physically, in addition to mentally.

So here I go.  I am officially (blogging about it makes it official) going 100% sugar-free, just like Logan.

I hope I do as well as my son.

Feeling: Craving sugar already.  12 hours down, 39 1/2 days to go.

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Week 22: This should be working

Perhaps I spoke too soon.  After a fantastic week with Logan and high hopes that we were making progress, we had an awful week, full of his screaming, “I hate you,” and “I want you to die” and other aggressive comments, both to me and people in his daycare.  His teacher reported hitting again, and I saw him defiantly say, “No!” to his teacher when she asked him to clean up his toys (he hadn’t seen me yet).

Why?  What the hell do I have to do to make life better for him?  I’m busting my ass to try everything I’ve come across, and for what?  This was supposed to work, I want to scream … and sob.  This was supposed to work.

We’d even gotten through Sadie’s birthday sugar-free.  I stayed home Thursday morning to bake sugar-free, gluten-free, and dairy-free cupcakes for her birthday dinner.  I’d found a recipe I thought I could do and crawled my way through it.  From a recipe on  http://theglutenfreedish.blogspot.com/2010/01/carrot-cake-with-coconut-creme-icing.html, I needed:

  • 1 1/3 cups of gluten-free flour mix (I made my own)
  • 1/4 + 1/8 (or 3/8) cup Lakanto
  • 1 1/2 tsp baking soda
  • 1 1/2 tsp baking powder
  • 3/4 tsp nutmeg
  • 1/4 tsp allspice
  • 1/4 tsp salt
  • 1/2 tsp xanthan gum
  • 2/3 cup extra virgin olive oil
  • 4 egg yolks (I substituted 2 whole eggs)
  • 1/4 + 1/8 (or 3/8) cup coconut milk, lite
  • 7 drops Sweet Leaf Stevia liquid
  • 1 1/2 cups finely grated peeled organic carrots
  • 3/4 cup chopped pecans (I used almonds instead)

Cooking makes me tense.  It makes my heart pound.  So I flipped away from the recipe page my iPad to Pandora and sang—loudly and probably horribly, as I sing about as well as I cook—with the first song that came on.  It was smooth and comforting.

“She’s as sweet as Tupelo honey,” I sang with Van Morrison, feeling calmer already.  “Just like honey, baby, from the bee…”

“Oh, and Siri,” I said, “What the hell is 3/8 cup?  How much is that?”

“3/8th cup is 2 tablespoons,” she responded.

If only the iPad could actually cook for me, too.

I mixed all my dry ingredients together, ground the Lakanto in a coffee grinder to increase its volume (a trick a friend shared for making the expensive sweetener last longer), and then added my wet ingredients, like the directions said.  The batter had the consistency of damp, crumbly sand.

That can’t be right, I thought.  So I added a splash or two of coconut milk to make it more … well, more like I expected it to look like, though god knows why I should expect anything in the kitchen.

I spooned my carrot cupcake batter into liners in a muffin tin and slid them in the oven.  I think this may have been the first time I made a recipe and actually ended up with the amount I was supposed to.  I felt good.  In fact, I felt really good.  So I switched the song to The Killers and danced around, furiously.  Which was probably hilarious, as I dance as well as I cook, too.

Here’s how they turned out:

Amazing … they’re OK!

The cupcakes were delicious, and even more so when my husband topped them with sugar-free frosting.  So I should be happy, and our lives should be evening out as we get more and more of a handle on our diet and probiotics.  Sugar is gone.  But the odd hand patterns, lack of focus, and aggression remain.

So what the hell is not working?

Feeling: Pissed off

Week 20: Waffling…

Chef Logan

Have we seen any changes?  Not really.

Is cooking gluten-, dairy-, and sugar-free getting easier?  Well, kind of.  The constant mountain of dishes on my counter is getting old, though.

Should we keep going?  Ehh…

Another week of getting up three hours early and still not finding enough time to eat breakfast myself come and gone.  At least it’s not so difficult anymore–in fact, I’m finding the time a peaceful, relaxing way to start the day.  And without two kids clinging to your legs, cooking isn’t so bad.  (Of course, the lunches I cook now are almost always leftovers from supper … but it’s still work, right?)  Knowing what I can and can’t make is immensely helpful.

And my husband figured out how to make delicious waffles without wheat, casein, or sugar.  He even found a recipe for syrup that tastes good.  The past two Sundays we’ve made sure to plan ahead by baking waffles for at least two breakfasts during the week and snacks for every day.  We’ve got a good stock of almond flour-coocnut flour cookies in our freezer now, as well as these strawberry “marshmallow” things that are basically plain gelatin with fruit and lakanto.  These pre-made treats have been a lifesaver for doing this diet.

We successfully ate out at another restaurant, too, and managed to stick to the diet.  Logan ate broiled fish with extra sides of vegetables and seemed to accept that he couldn’t eat the bread appetizer or ice cream dessert the other children had.  He’s also downing his probiotics and asking for more.  All signs point to successful implementation of the BEDROK diet.

Yet… Are we seeing any change?  My husband pointed out that improvement was supposed to be displayed fairly quickly, but we are still getting reports of rough days at daycare and still see crabby, whining fits at home.  Would it be much worse if we went off the diet?  It seems like we’ve been here before, contemplating if we should ditch the dairy-free diet because we couldn’t tell much change–and when we did, Logan’s behavior immediately went south.  So maybe the change has been so gradual it’s been hard to really tell.  I suddenly feel scared, like the possibility of living with autism forever is finally hitting me square in the face.  I wonder, nervously and shamefully, if I’ve simply been in denial all along.

Then again, how could we not have tried …

Feeling: I suppose I should feel embarrassed, looking at my husband’s waffles below, but I’m not.  I’m just glad one of us can cook.

Week 13: Adventures suck

A friend of ours quoted Rush drummer Neil Peart this weekend: “Adventures suck when you’re having them.”  I whole-heartedly agree.

I didn’t post last week mainly because I didn’t have anything to say.  I haven’t really increased Logan’s probiotics levels, yet he still has had a couple of really rough days.  Almost every morning has been either simply a struggle to get him moving or a complete meltdown, and almost every day we hear reports that he has been aggressive at school–even hitting two different teachers last week.  There doesn’t seem to be any cause for this, and it also doesn’t appear to be a regression, exactly.  Aside from these meltdowns, his behavior has been pretty typical for him–not bad like when we introduced the probiotics, but I also can’t say we’re seeing any improvements, either.

It all adds up to be hugely disheartening.  And confusing.  On one hand, I know we are still easing into the diet and aren’t completely sugar-free, so I don’t think I can write off the diet just yet.  On the other hand, I keep running into skeptics–most notably, our new pediatrician who told me there was no evidence diet helps autism.  I understand most physicians are trained to rely more on pills than nature, but I’d hoped this one would be different because he has a son with Asperger’s.  I also keep reading conflicting opinions on autism support pages with people claiming the bad science of GFCF has got to go, that it’s doing more harm than good because it robs children of nutrients, and that parents who buy into these alternative treatments are all delusional.  It’s hard to know what to feel–gullible?  Or progressive?  Add in the fact that I’ve also heard that to have any effect, this diet needs to heal the gut before the mind completely forms or “the cement dries,” so to speak, which seems to happen around 4 or 5.  Logan turns 4 in two weeks.  Are we too late?  Have we missed our chance at helping him (if it even existed in the first place)?

Granted, adopting a dairy-free, starch-free, and sugar-free diet is probably healthy even if it doesn’t cure autism.  One of the foundations of this diet is that 80% of each meal should be vegetables, which is obviously a good thing–for me, my daughter, my husband, and Logan.  And it is seeming easier and easier, in theory, at least–actually finding the time to get organized to do it is another story.  I tried to tackle the natural food store again, deciding that going on Monday would be less hectic than Sunday, and I could wander around and explore or ask questions.  Instead, the place was so packed, you could barely squeeze through the small aisles, and the lines for the few cash registers stretched halfway to the back of the small store.  I left without half of the items I’d gone to hunt for.  We also tried ordering some lakanto (an acceptable substitute for sugar) online, only to find out it’s on back order with not exact estimated arrival date.  I know I detest cooking, but at this point, it’s not even a lack of cooking knowledge that’s preventing us from following the diet–it’s simply finding the ingredients!

I could go on and on–more stress at work, stress from school, stress in the marriage, stress from cold season and a toddler who’s molars are coming in … it’s definitely easier to bitch that adventures suck than it is to proclaim that this is the most wonderful time of year.  But I’m trying.  And I hope, like all adventures, this makes for a good story one day.

Feeling: Disheartened

Week 12: Reasons to be thankful

As the hectic Thanksgiving week wraps up, I feel thankful for many things.  Of course, the big family with cousins and dogs we had fill our house on Thursday, our lovely house itself, and getting to see my brother if only for a short time.

I’m also thankful we picked last week, a short one, to begin packing Logan lunches.  Hard-boiled eggs, carrots, broccoli, vegan cheese, chocolate “pudding” … daycare reports that Logan is doing a good job understanding he is on a special diet and not complaining about wanting what the other kids have though he’s not eating a ton of his food, either.  We haven’t started sending breakfasts or snacks yet; we’re still easing into effort of putting lunch together every night.  It means he is still getting some sugar, unfortunately.  We’ve thought about getting around the hassle of sending breakfast by keeping Logan at home an extra 45 minutes, feeding him breakfast at home, and then taking him to daycare just in time to catch his bus to preschool.  That would mean he would qualify for only half-day tuition rather than full-day tuition.  But, incredibly, going half-day for Logan would actually cost us $3 more per day because A) it’s only a $60 savings anyway and B) dropping him off an hour late would mean I miss the last bus and would have to drive—and park—downtown.  And the headaches we’d save by feeding him at home would be cancelled out by the headaches caused by battling traffic.

I’m very thankful for my husband and his ability to cook despite his inability to ever tone things down.  Our Thanksgiving meal was a strictly traditional feast with all the bad stuff: stuffing, mashed potatoes (laced with cheese), green bean casserole, buns.  I—and his sister—had tried to convince him to cook more simply this year, but Jason has this crazy need to exceed.  It’s exasperating but also endearing; I know he wanted to please everyone rather than have everyone conform to Logan’s diet.  Luckily, Logan has no interest in side dishes and only ate turkey and some raw broccoli and carrots.  I think the commotion of a dozen people he doesn’t see too often all around the table also motivated him to leave quickly, before he could notice the three pies on the counter.

Our meal at my mom’s house two days later was healthier and more suited for Logan’s diet, which is yet another reason why I am always so thankful for my mother.  She works so hard to help out with our diet attempts, buying two big grocery bags full of things she found at Trader Joe’s that were GFCF and some sugar-free, too.

But thinking about that, I remember I am not thankful for seaweed snacks.  I just about gagged and crashed driving down the highway as I popped one in my mouth.  The kids may have liked them; I did see them take a few nibbles, at least.  But mostly they just loved crumbling the papery sheets into confetti and tossing them all over the minivan.

Most of all, though, I am thankful for the progress Logan seems to be making as we work to decrease his sugar intake.  True, he still has many struggles, and I fought tears on Thanksgiving while watching him try (and mostly fail) to play with his cousins.

“Logan’s kicking us!” they complained during their rough-house game of football in our backyard.

How do I explain to a 7-year-old, whose social functioning skills are perfectly intact, that some people cannot understand the subtle difference why it is OK to run full-speed into another person’s body, wrap your arms around his waist and throw him to the frozen ground but not OK to kick his legs?  Why it is OK to steal the ball from another kid and run away with it and yell, “touchdown!” but it is not OK to steal the ball when the “play” is over and run in the wrong direction?  More importantly, how do I explain those subtle differences to Logan?  No wonder he often tries to retreat to his video games, where the rules are clear-cut and consistent.

But I think Logan has been happier and more compliant the past week or two, and I try to remember that.  Friday he helped me put ornaments on our Christmas tree, and the whole day was about one of my favorite days ever.  Now because he’s leveled off a bit, I’ll be increasing his probiotics this week, and Jason will begin to bake with lakanto and attempt to ferment vegetables.  It’s likely Logan might regress a bit because of these things, and I’ll try to remember the reasons why again we’re attempting all of this.

Feeling: Thankful

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