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

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8 responses to “Week 52: Hope That Ebbs and Flows

  1. Do you think you could try converting his favorite foods to GFCF instead of trying recipes for new things? There are a few conversion charts out there. But, you are hooked up with awesome TACA, so you probably already know about these things. 🙂

    • Hi Georgia Mom,
      We do convert some of his favorites to GFCF (like waffles, for instance, and cupcakes). But in general, we try to avoid all flours (even GFCF ones), and that was pretty much the extent of his favorites. Trying new recipes is also partly for me as I’m trying to learn to cook–before we began this diet journey, I could barely boil water!

      And yes, TACA is great!!

  2. Again, I can relate. 🙂 Since going on the (lower fat/carb) primal diet, I have for the most part only been giving my daughter foods with GF flour when she specifically asks for them, with the exception of floured/fried cubed steak, which she loves too much for me to ignore. I haven’t mastered cooking with only coconut and/or almond flour yet. I am still relying on my Carol Fenster GF cookbook and substituting with Ghee, EVOO, palm oil, and/or coconut oil.

    Thank you for the gift of your blog.

    • Thank you for reading! Your blog is beautiful, and I definitely relate to what you say about getting back to your “creative space.” In my pre-kid and pre-autism days, I was also a writer, too, and am finding this blog helpful in making me feel at least somewhat still a creative person. And I’m impressed you’re apparently blogging every day!

  3. Thank you. I schedule many of the posts on days when I am feeling chatty and my daughter is in solitary play mode, or asleep following seizure activity/days of insomnia, etc. It’s just the two of us.

    • Then further hats off to you! It sounds like she is very lucky to have you. I notice on your blog you don’t write specifically about your daughter — do you mind my asking how old she is?

  4. Not at all. She is soon to be 24 but functions at about the 3 year old level. No behavior issues, and thankfully she is petite. Going GFCF eliminated 66% of her seizures – at age 18. It was because of TACA’s articles about going GFCF on a budget that I was finally able to try it. I had no idea that there was a seizure – gluten intolerance connection.

  5. I’m so happy that you have “Georgia Mom”………..I’ve loved all of my support groups…….nothing better.

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