Week 36: The pizza attempt

Editor’s note: By the way, if you’ve been wondering why I’ve been posting about three “Weeks” every week, it’s because I’m trying to catch up!  I fell behind in writing in the last few weeks of my MBA program, but after this week, my posts should be more reflective of our actual current week.

“I miss pizza,” Logan said, looking at me with sadness in his eyes.

That’s random, I thought.  He hasn’t had pizza for 33 weeks and hasn’t mentioned it once.  Did he see it somewhere?  He doesn’t watch TV, so it couldn’t have been a commercial.  Maybe a kid at daycare was talking about eating pizza?  Where does all the randomness come from in his mind?

“I wish I could have it again,” he continued in a voice far too morose for a 4-year-old.  It broke my heart.

“OK, honey,” I said.  “We’ll figure out how we can get you some pizza.”

So that night we found a restaurant nearby that sells pizza with gluten-free crusts (we didn’t ask if it was rice-based, which it probably was, which means it should have been off-limits.  But the sadness in Logan’s voice!  I felt like it was my duty as a mom to get this kid pizza, even if we had to cheat a little.)  We ordered it with sausage, veggies, and no cheese.  Of course, it came with tomato sauce, which I had forgotten about until I saw it — that’s off-limits, too.  Goddamn it, I wanted to say.  I hate this diet.  It’s so hard to understand.  Can cheating a tiny bit every once in a while really hurt all that much?  Are these minor infractions the reason why we still wonder if we’re seeing real results toward fully recovering Logan?  Honestly, it’s so hard to believe a few bites of rice and tomato sauce could mean the difference between social functioning and isolation.

Yet, here we are, still trying to do the diet.

We added vitamin supplements this week, too, as the next phase of our diet journey.  Logan now takes omega-3s in a squeeze packet (we call it his morning squeezy), and I mix a powdered spectrum supplement that’s heavy in B-6 and B-12 into his probiotic shake.  At least this addition to the diet is easy–no cooking involved!

Another nice thing about supplements is there are no explanations needed for giving a kid vitamins.  No one thinks this is a weird or far-fetched plan for better health like they do (or seem to) when I mention Logan’s probiotics and zero-sugar diet.  Even Sadie doesn’t ask why I give her a vitamin in the morning, but she’s starting to question Logan’s diet, too.

“Why Logan can’t have gloo-ten?” she asked as she watched me pack a lunch for Logan before daycare.  I explained–in as simple a way as I could for a toddler–that gluten made his body feel bad on the inside.  I always try to carefully say, “Logan’s body” or “your body” rather than “Logan” or “you” because it sounds (to me, at least) less like punishment.

Sadie pondered this for a moment, and then asked, “Logan have a owie in his body?”

The constant question.  How to explain autism to a 2-year-old?  How to explain things to coworkers who think they understand our situation because their children “throw tantrums, too,” how to explain things to nephews who get frustrated that Logan wants to play the same video game over and over?  I know you’re not supposed to feel you have to “explain” a special needs child, but in reality, that simply doesn’t work.

“No, Sadie,” I said, hugging her, “Logan doesn’t have an owie in his body.  Everybody’s body is just a little different.”

Feeling:  Sad

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Week 35: From one extreme to the other

A few weeks ago I bemoaned the fact we were “back to the ball of thread,” trying to unravel the invisible link from Logan’s meltdown to its trigger.  With autism, so much is a mystery—but in this case, I think I might actually have found the tenuous thread.  Unbeknownst to me, my husband had increased Logan’s dose of probiotics, giving him almost a full cup of coconut kiefer per day instead of a half cup.  It’s possible—likely—this has caused another round of yeast die-off, which causes progress to spiral back a bit before (ideally, at least) improving more toward autism recovery.

But, on the other hand, that thread might also begin not with diet changes but with schedule changes.  Logan also recently started attending an autism day treatment program three mornings a week, which means he now bounces between that, preschool through the school district, and his regular daycare.  He sometimes eats breakfast at home with me and sometimes at daycare with his friends; sometimes he rides with me to and from day treatment and daycare, sometimes on his bus to preschool, and sometimes with his “Aunt” Susie and her children.  For a little guy really likes consistency, it’s a pretty overwhelming schedule—in fact, it’s pretty overwhelming to me even.

Whether it’s from probiotics or stress, Logan seems to be again both progressing and regressing at the same time.  He constantly babbles “baby talk” in the morning getting dressed, in the evening eating (or avoiding eating) dinner, and at night cuddling before bed.  He often is unable to focus, ignoring us when we ask questions and barely able to color for 10 seconds before putting his crayon back down and beginning to babble or zone out again.

Then again, this morning he seemed more interested in his peers than he ever would have been six months ago.  As we walked into the classroom, we were greeted by a little boy chattering, “Hey, Logan!  I wore my frog raincoat today!”

At first Logan didn’t respond, but when he reached the coat hooks and saw the plastic slicker with frog eyes on the hood, he turned excitedly back to the boy.

“Wow, Gavin, cool coat!” he exclaimed.

An exchange like this is pretty impressive given how little Logan engaged with his peers six months ago or so, but still, these instances are few and far between.  I never know which extreme he’ll be veering toward these days.  Happy and yelling “Hey, Mom!  Let’s race cars!” or depressed and mumbling, “I just want to stay home.”  A wiggly, hyperactive body with nonsensical baby talk and a motionless, zoned out body with blank stare and silence.

Jason wonders if the change we’ve seen in Logan is because he’s now too stressed with juggling day treatment, preschool and daycare.  Even his skin is showing signs of eczema again, which we haven’t seen for about 30 weeks.  Jason wonders if all these therapies are too much.

I do think he has a point, that sometimes parents can go overboard with therapy and push their kids too much.  And I would think that’s the case with Logan now, but I know it will only be for a few weeks until the school year ends—then his schedule will be a much simpler combination of just day treatment and daycare.  I think (or desperately hope) that these few weeks of craziness will be worth it in the long-term.  I wonder constantly which extreme he’ll be going down on any particular day, and which he’ll end up going down for good.  Will he grow up friendly, able to interact and manage in society?  Or will he grow up closed off and zoned out, and struggle to live independently?  The thought scares me every day.

Feeling: Chilled

Week 34: Hindsight and the evolution of ASD treatment and recovery

As my family is currently going through dietary changes and trying to recover Logan from autism, I know how hard it is, and I can’t imagine how much harder it must have been 15 years ago! A big thank you to Lisa, Holly, and the other parents who did help pave the way–your stories inspire us to keep going!

Moving Autism Forward by Team TACA

 

hindsight

By Holly Bortfeld

 

I went to the IACC meeting in Washington DC on April 8, 2014 (1) to testify in front of the committee about my family’s autism journey. I took my son with me, as I am a single parent and have never had respite care. Standing over 6 feet tall, my son is 18 years old, and terribly handsome, if I do say so myself. He sat there for 6 hours in a boring room and never made a peep. He was awesome.

 

A man who I’ve known over the internet for many years was there to testify as well. He came up to me and my son and as we were talking, he looked at me and said “He’s so, so good, what did you do? Please tell me, what did you do?” His eyes were pleading and I thought he might cry. I…

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Week 33: “Hooked” on sugar

Lent is over, which means my trial of being as strict about the sugar-free diet as we are with Logan is over, too.  And thank God.  I have to admit I came nowhere near eating as well as Logan–I had to cheat and have a few beers (especially when I finished my MBA a few weeks ago!), I had to be able to order Jimmy John’s for lunch when I would forget to pack my own (which was often), and I had to just plain cave and indulge in dessert with my husband a few times.  I always knew that life with autism is tough for Logan, and now I know how extra hard we’re making it by not letting him enjoy the snacks and treats other kids all get to eat.

Me reading for Cracked Walnut

Me reading for Cracked Walnut

A few weeks ago, I was invited to read as a part of the annual Twin Cities Literary Festival, hosted by Cracked Walnut, which organizes literary readings around Minneapolis and St. Paul.  The theme of the night was “Hooked,” and I and the other readers that night were supposed to read pieces somehow related to addiction.  This was in the middle of my sugar fast, and sugar addiction was all I could think about.  Here’s an excerpt from what I wrote and read for that night.

 

… Now the night outside tumbles black through the window, just like I feel inside, like Guinness spilled in a parking lot. My body feels groggy and heavy, and I should probably just go to sleep. Instead I bang the kitchen cupboard doors open and closed. I rummage through the backs of them, looking behind bottles of vitamins and boxes of tea bags. Chamomile, and lemon with honey.   The color of Logan’s soft, 4-year-old hair.

“Goddamn it, why isn’t there anything in here?” I mutter.

I am hungry. Check that—I am starving. I had given up sugar a few days ago out of fairness to my son, whom we’d taken off sugar, gluten, and dairy a few months ago in hopes of killing off the excess of yeast in his digestive track and therefore treating his autism. It is promising—he has fewer meltdowns now and more conversational skills, it seems—but man, is following the diet hard. The dairy wasn’t too bad—luckily, Logan loves coconut milk and quinoa milk. The gluten actually wasn’t too bad, either—I suppose the silver lining in the rise in food allergies and intolerance is that there are plenty of products available today that are gluten-free.

But sugar is another story.

Spaghetti sauce, pizza, chicken noodle soup, rice cakes, baked beans, mayonnaise—everything has sugar. Even most products claiming to be “sugar-free” really aren’t—honey, agave nectar, and molasses are all sugar far as the yeast in the gut is concerned. Not even the sugar in fruit is allowed on this diet, because it will still feed the yeast overgrowth.Me reading for Cracked Walnut

I stare at a jar of peanut butter and want to cry.

“Now you know what it’s like to be addicted,” my husband wryly observes.

F you, I scream inside, my sugar withdrawal tearing me apart and sending white stabs of pain through my temples. It’s been just three days, and it feels as though I haven’t given up just sugar but all food entirely.

“I just want a goddamn plain bagel with cream cheese! But that has sugar!”

“Excuses,” my husband says. “Cook the broccoli that’s in the fridge.”

Even though I’m so hungry it feels as though an empty, gray universe is slowly ballooning behind my eyes, vegetables actually sound worse than nothing. I don’t want vegetables—I want something hot, smooth, and comforting.

I had combed Whole Foods shortly after I gave up sugar in search of something to grab for lunch and take back to work; curried cauliflower was about my only option. Now, I wasn’t looking at the red slabs of beef or the lemon-dusted pork loins, or any of the raw vegetables. I didn’t have time to actually cook myself a meal for lunch, nor did I have the means to do so at my office. I needed something I could get quickly. And here, I think, is how sugar hooks us–life is so busy and cluttered today, that we need those easy products laced with sugar.  If we want to give up sugar, we have to give up our modern lifestyle—which sounds to me, as I grab a bowl from the cupboard and angrily pour myself a bowl of Quaker Life cereal with 6 grams of sugar—like giving up life itself.

Of course, the point of the sugar-free diet is to make life easier for Logan, not harder.  My 40 days made life hell–I wish I could tell definitively which way it swung life for Logan.  On one hand, he freely chooses not to eat Goldfish crackers if he sees Sadie with them.  On the other hand, he always asks to smell things with casein or gluten, and the other day said so forlornly, “I wish I could have pizza again.”  Sometimes he seems so stoic it just breaks my heart.

Feeling: Defeated.  I tried so hard, and still couldn’t completely give up sugar!

Week 32: Flour flowers for me

I had to share this lovely surprise from my husband the other day–two beautiful flowers made from our homemade cracker dough scraps!

If white roses symbolize innocence and red roses signify passion … onion roses say dedication.

My husband doesn’t give me flowers very often.  In fact, I think it’s happened three times in our nine years together.  Yet he shows his love for me and our family continually by cooking GFCFSugarF meals for us every night and GFCFSugarF treats to stockpile every weekend.  Marriage is never easy, and a diagnosis of autism adds a ton of stress to the  mix.  Because of this, some studies claim divorce rates are higher among parents of autistic children (though other studies say there is no difference), and the organization Talking About Curing Autism even lists “Keep your marriage and family in tact” as a step in its “Autism Journey: Year One Blueprint” guide.  Flowers have never seemed that important to me, but this one made from onions, thyme, and flax seeds and the dedication it represents mean more than I can say.

Feeling: Loved

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