I knew about the gluten-free diet long before it became mainstream. I have worked as a clinician in the field of autism for years, and even as early as the late nineties many of my clients were on or were interested in the gluten-free (GF) diet, or it’s more complicated sister, the gluten-free/casein-free (GF/CF) diet.
Anecdotally speaking, many of the families I worked with reported a difference when their child with autism was on a GF or GF/CF diet. Some parents spoke of positive changes in behaviours; others mentioned an improvement in sleep, focus, appetite or digestive function.
Because so many families asked me about it, and so many parents seemed to have positive anecdotal experiences to report, I developed a real interest in the GF and GF/CF diets. I read:
- Special Diets for Special Kids
- Special Diets for Special Kids 2
- Unravelling the Mystery of Autism and PDD: A Mother’s Story of Research and Recovery
I met Dr. Lisa Lewis, who wrote Special Diets for Special Kids. I heard Karyn Seroussi, author of Unravelling the Mystery. Short of becoming a nutritionist, I made myself into something of an expert – or at least an informed source – on the GF and GF/CF diets.
So when BOTH my children, and later my husband, were diagnosed with celiac disease and we were told the only treatment was to follow a strict 100% gluten-free diet for the rest of their lives, no one could have been better prepared than me, right? I mean, I KNEW this stuff.
I was a mess. I cried, I stressed, I grieved, I became certain that life as we knew it was over. I doubted my capacity to cope. I doubted our capacity, as a family, to flourish within these new restrictions on our lives. In short, I reacted like any parent whose child gets diagnosed with a medical condition or any other –Ism. I may have been well-informed, but when it was happening within my own family, I couldn’t call on any of that professional objectivity.
But here we are a year later, and guess what? It’s not so bad. I feel an enormous amount of compassion for the tearful mom I was a year ago, but I am so relieved I’m not in that spot anymore. Some things are hard, but we’ve settled in to our new reality and found a way to make it work for our family.
Any family adjusting to a diagnosis goes through a huge sea-change. So let me share the most critical factors that helped us to adjust to our new reality.
1. Find a Friend
I have to be honest: We had a little bit of an advantage here. My daughter has a friend in her class who had been diagnosed with celiac at age 3. And her mom is none other than the great RonniLyn Pustil of the fabulous GlutenFree Garage, which is a blog and pop-up marketplace of premier gourmet gluten-free resources.
Already being friends with RonniLyn when my children were diagnosed was a bit like being interested in ABA therapy and having B.F. Skinner as your next-door neighbour. But here’s the thing: Every parent whose child has a diagnosis becomes an expert in that field. I already had all the technical information I needed on the GF diet.
What RonniLyn helped me with was to figure out how to make it work as a parent and for my family. She gave me the absolute best pieces of advice I received from anyone – because she was a parent, because our kids were the same age, and because she had already figured out how to manage the logistics of the situations we were going to face.
(I’ve said it her before that I know I can’t ever thank her enough for all she did for me but I’m going to try again here: THANK YOU, THANK YOU, THANK YOU!!!!).
What if you don’t have a RonniLyn in your life? Find a support group or parent group for parents of kids with the same diagnosis as yours. Connecting with other parents going through what you are going through – or what you’re going to go through but don’t know about yet – is probably the single best decision you can make when adjusting to a diagnosis. Other parents – who, like Ronnilyn, will have made themselves into experts on the diagnosis – will be your most important resource in figuring out how you’re going to make the diagnosis work for your family.
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