Tuesday, November 12, 2013

A Big Mistake and Hope

Yesterday when one of Mae's therapist arrived at our house with one of her interns I hesitantly told her about this past weekend.  "Well, we learned something this weekend."  I began.  "We went out to eat for Patrick's birthday."  I didn't add that usually we're so careful that when we do go out we almost always go to Chili's where we can order plain old chicken off the kid's menu which has always been okay.  "We went to a restaurant that I thought would be okay.  And I looked at the menu and everything was so gluten-y.  And I got her fish, thinking that it would be such a small amount of gluten in the breading that she would be okay.  The tests came back negative for celiacs and for all allergies.  And while we're obviously still avoiding it, I thought a tiny amount probably wouldn't hurt."

I paused and took a deep breath.

She only ate a tiny amount of the fish, but by the time we got home she was covered in a rash.  And she was up for hours jumping in her room.  And for the next night and the next night after that too.  And the teeth grinding started again... all day long yesterday, which was the third day, I could hear here grinding her teeth.  I just couldn't believe it."

As Mae's therapy session began it became clear that the effects were even further reaching than I'd realized.  She struggled to do the majority of the things that she's been doing easily through the past couple of weeks.  She screamed (in a happy way, if you can imagine) instead of using the news words she's been steadily learning and throughout the three hours I could hear her grinding her teeth.  She needed to have a tiny toy grasped tightly in her hand the entire time.  The difference was dramatic.

And I tried to not feel quite as horrible as I was feeling by repeatedly telling myself that we had learned something... something huge... and that we now knew that she couldn't have anything with even a tiny bit of gluten, even on a special occasion.

The day wasn't over yet though.

In the afternoon the graduate research assistant that is going to be coaching us during the class I'm taking (as part of the study), came over to film us playing and having a snack and to set up my computer for the program.  I searched for something that would engage Mae for more than a few seconds while we played and then grabbed a piece of paper and crayons.  She can't resist a box of crayons.  Instantly we were side by side on the ground coloring.  I would draw a shape and she would color it in.

The part of the day that amazed me, however, came a few moments later when we were filming her snack.  Mae ate some dried apples and sipped her almond milk while sitting in her chair.  Then she hoped down and came over to me.  "Up!"  She said clearly.  I scooped her onto my lap.  She pressed my cheek to hers and then pushed it away then pressed it against her own again, giggling.  Then she took my left hand in hers and put her foot in it.  With her other hand she put my right hand on top of her foot and then scratched the back of my hand to show that she wanted her foot scratched.  I scratched her foot and she giggled and kicked her foot away and then repeated the entire process.

It was the most perfect non-verbal communication I could imagine (and the filming was to see how Mae communicates at this point, before the study begins).

The young lady who'll be working with us said that she's never seen anyone get the help that Mae has gotten as quickly and smoothly as we've gotten it.  It's how the system is supposed to work, theoretically, but it usually doesn't.  Many people get a diagnosis and then languish, waiting for help.

And as each day goes by I am incredibly thankful and feel very blessed that somehow Mae is getting the help that she's needed.  She looks forward to her therapy sessions each day with such excitement and she's so clearly proud of herself each time she uses a new word.  She's blossoming as we all learn how to help her communicate with us and the world around her.

Two months ago yesterday we were in the doctor's office when she suggested Mae was on the spectrum. It's only been a month and a half since we felt as though our world was turned upside down by the diagnosis.  In the beginning I couldn't help but attempt to peer into the future and wonder where this frightening diagnosis would lead us.  In the few quiet moments I had, I was terrified for our littlest girl.

That has changed.  As we've gone along I'm learning to focus on the day to day as she hurdles past challenges with an infectious giggle and her Mae-typical fearlessness.  As I watch her, determined to face every challenge she comes across, the future is far less frightening.  In truth, as I look back over my fears I wonder how, knowing Mae, I could ever have expected anything less?


  1. Well, at least now you know that the tiniest bit of gluten will have that effect. Does that type of allergy lessen or go away over time? My son was diagnosed with a severe nut allergy at the age of 15 months and they said it might eventually go away but so far it hasn't happened.

    I'm so glad you've gotten the help you've needed so quickly. I'm quite certain that was a God thing. I'm sure all of your readers (as well as many others) have been praying for you guys the last two months.

  2. Cam, this topic is not at all what I began following your blog to read. And I am so thankful that you are taking the time to detail your trials and celebrations, and Mae's. I know a number of autistic children of various ages, who have had various levels of support --- or none. And I have occasions to offer support.

    I've read dozens of studies, learned lots of information, but none of them included talk of faith or love, and I think it the most important ingredient. Thank you, for being who you are.

  3. Sounds like a pretty severe gluten sensitivity, with far reaching consequences. glad you have figured it out. my cousin has a two and a half year old boy just diagnosed with autism. she is trying a gluten and dairy free diet at the doctor's recommendation. hoping for good results, but also scared what she will feed him if it does work. he has pretty severe food aversions, so his entire current diet is pureed squash, green beans and applesauce, milk, yogurt and Cheerios. no gluten or dairy takes out all the fat and protein, and most of the calories.

  4. You've most likely seen articles about the result of this study, but I thought I'd post it anyway: http://www.autismspeaks.org/science/science-news/autism-study-finds-no-link-celiac-disease-gluten-reactivity-real

    In a nutshell, while there was no link between autism and celiac disease, there are, indeed, indications of a connection between autism and negative reactivity to gluten in some children with autism.


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