Friday, November 09, 2007

Gluten Free No More -- Or What's In A Cookie

So, about a week ago Oliver had a piece of pizza. I watched him. And I waited. And I watched some more, trying to be as objective as possible. Mostly what I saw was just a very, very happy boy. After that my heart wasn't really in it anymore.

Going GFCF wasn't really that difficult for us. I want to say that it was even easy. Give me some rice noodles, fish sauce, soy sauce, sugar, lime, basil, meat, chili peppers, maybe an egg or two and I can usually whip up something in about 20 minutes. And usually it would be gobbled up by just about everyone except Sami who doesn't eat these days just to be contrary.

We started the diet on August first and kept it up, without infraction, for almost 14 weeks. But if there was any difference in Oliver is was extremely subtle. Extremely subtle. Oh sure, there were times when I thought he seemed more this or less that, but there were an equal number of times when he was dysregulated and I had to wonder if it was him or me. Because really, I'm often very dysregulated. And we're a unit, my boy and I. So in the end, it was really hard for me to say that the diet made any difference at all. Except that without all the bagels I dropped five pounds.

But here is the interesting part (to me, anyway): I'm feeling a bit guilty about it. You see, the day after the piece of pizza I loaded the boys into the car and took them to the cookie store. Both boys know the downtown bakery as the cookie store and going there is one of our favorite outings. "Let's go on an adventure", I'll say. "To the cookie store!!" Then, we pile in the car and I drive a half mile to the city center. I park in the parking garage, we make our way to the bakery, go inside and order up four cookies for a dollar. I like the snickerdoodle and the boys both like the chocolate crinkle or chocolate chip. I give Oliver the money and he pays the lady, then we find our chairs in the back of the little seating area and have at it -- each of us seeing who can eat our cookie the quickest and lay claim to the fourth. Normally Oliver wins but usually I can convince him to give me half.

I love taking the kids to the cookie store. I love everything about it. I love how excited they are to be in a parking garage. I love how the bakery smells. I love how competent Oliver is at navigating his part of the adventure. I love how Sami gets covered with gooey chocolate. I love how the bakery ladies cluck over how handsome my boys are. And I love how someone looking at us from the outside would think we are just like any other family -- how for that half hour excursion I feel just like any other family.

But then a little annoying voice in the back of my head says things like: maybe you just didn't do it right. Maybe you didn't try long enough. Maybe it takes six months. A year. Maybe you should have also cut out soy. Or corn. .... Or maybe the diet was just preparing his body for what should have come next. Anti-fungals? Pro-biotics? Zinc? B-12? And what? You're giving up almost fourteen weeks worth of work for a cookie???

So I argue with myself and say: "Well, no, actually. It was four cookies. And two happy smiling boys. And the ladies who cluck over my kids. Even if one of them has autism and won't engage them in conversation but thanks them anyway with his hearty appreciation for their cookies. It was my strong desire to just live life with my boys. To stop weighing and measuring and examining every little moment.

It's an argument that will probably be on-going with me. Every time I hear about someone whose children made incredible progress on the diet or by following a DAN protocol I'll probably wonder if my instinct was correct, if I was just seeing what I wanted to see, or if I gave up too soon, didn't do enough.

My sister-in-law, who has Down Syndrome, turned 50 this year. I remember that when we were trying to find which direction to take with Oliver, my mother-in-law told me (well, Nik translated for me) that when her daughter was very young they didn't know what caused Down Syndrome and that some believed that blood transfusions and other similar kinds of interventions would help "cure" or lessen the symptoms. There were doctors out there who did these sorts of things. Nik's mom did all the research and eventually decided not to do any of it. She would have had to travel a great distance and it would have been costly. Besides, she said, her daughter was always a very happy child. She told me that she thinks that the understanding of autism today is where Down Syndrome was fifty years ago. So I often wonder how long it will be until we look back at today and know -- really know -- what it is and what to do to help lessen the challenges that face kids like Oliver. I hope it is in my lifetime. And I hope I don't regret all those cookies.


  1. This made me cry. Life so often feels like a breathless race to do all the right therapies, to try the diet, to try this or that. Just the fact that you broke free, even if momentarily, and just enjoyed that time with your boys. Well, that's what it's all about. I know it's hard not to feel conflicted though. I think we always will... this was a beautiful post.

  2. That was beautiful. You articulated what so many of us autism parents feel, the pressure to try everything and the resulting guilt for not. Your trip to the cookie store sounds magical.

  3. Guilt free pizza and cookie eating going on over here. Though I completely relate to your struggle having tried the diet for over two years with Andrew and still wondering what else to try. It is very difficult. Keep following your instincts! YES & NO?? Wow!!! Keep doing what you're doing. Oliver is doing awesome!

  4. Oh, no regrets, Christine, not for this. You tried. 14 weeks is huge. Now let it go.

    You are so right to follow the instinct you did, to choose to break free of the pressure and the worry. Your boys are happy and well-cared for and you are an amazing mom. Stick with the stuff that SHOWS you clear results. The other stuff just weighs you down.

    "And we're a unit, my boy and I." Beautiful. I feel the same about mine. Very often hard to see where one of us ends and the other begins.

  5. Members of the general public often ask me, when they find out about Henry, if I try a special diet with him, because they saw on the news that a special diet can cure autism. I've never really considered GFCF seriously, because Henry has never exhibited the intestinal problems that lots of other kids do. It works for lots of people, my gut is that it would not work for us. We have to go with our guts lots of time and yes, that path can be riddled with doubt.

    I loved the way you wrote about the bakery- I can feel why it is so special- that's what being a mom is all about!

  6. Christine, I can tell you that you absolutely did the right thing...for your family. If I thought I could drop the GFCF diet and get Nik to eat, I would do it in a heartbeat! It is NOT easy for us...we love our pasta, bread, cheese, pizza, cookies (ok, now I"m really hungry! UGH!). But we do it b/c **I** have problems, my sisters have similar gut problems and Nik was starting to exhibit similar problems when he ate those foods (back when he actually ate). We do it b/c of intestinal health NOT for autism.

    Like Gretchen said (nice pun, too, Gretch!), you have to trust your gut. It's when you see him eat ONE cookie and then he's a zombie or a wild man that you migh question your choice. BUt from where I sit, I don't think that's going to happen. ENJOY! :-)

  7. Great post!

    "Well, no, actually. It was four cookies."

    Darn tooting!

  8. This post really strikes a chord with me. So many people in my ASA chapter seem to greet me with "Are you doing GFCF yet?" Well, no we're not, in fact we are eating a LOT of waffles and drinking a lot of milk.

    Even though I don't feel in my heart of hearts that GFCF is what we need (we've done short trials), I still have my guilty moments. But, as your MIL said, my boys are just so happy. Especially happy after a waffle and some milk, so we probably aren't changing anytime soon.

  9. Why is your 'little voice' the same as my little voice?
    Best wishes

  10. I think you've found the magic ingredients! We're on and off being gf too----I try to keep Charlie off bread during the week and in school; weekends are more casual----and flexibility is good for us all!