I wanted to address my fellow parents, grandparents, siblings, best friends, teachers or therapists who may be trying to help the quality of life of a precious person who is affected by autism. You all are amazing and your work for your loved ones is not in vain. Keep searching, keep trying, and never ever give up. They are worth more than anything else you could do with your time and energy.
Thinking back on the past few years of our journey I was trying to decide what the biggest intervention we have done thus far for Bay. The answer was crystal clear as we took a not-so-welcomed trip down memory lane recently.
We have changed the way we eat in this house more times than I would have liked. Both times we changed our eating habits it was worth the complete hassle of it all. The first time was when we knew Bay was sick but no official diagnosis and we had not seen a specialist. I had a book on special diets for kids with issues ranging from ADHD to allergies all the way to full blown autism. I remembered we had it (as our oldest had some sensory issues and the book caught my attention) and we decided why not? We were willing to try anything to help her. The book said give the gluten/dairy/soy free diet at minimum a few months.
Ick. A few weeks or maybe one whole month was not enough? How am I going to do this? It is expensive and everything has gluten in it! Lifestyle changes are hard. The new task is daunting. I now have to get rid of pretty much my entire pantry. I am hot or cold when it comes to major life changes. For me, I had to throw it all out at one time and start with the basics. There are many ways to ease into this diet but getting rid of it all at one time was the way for me. Not to mention you cannot just decrease the amount of gluten and dairy, you must get rid of all of it. Check your toothpaste, shampoo, everything. If it goes in or on your body it has to be gluten free or this trial will not work.
Within two weeks we noticed drastic improvement for our baby. She actually slept through a few evenings in a row. Before we were up at 1:00 a.m. until 6:00 a.m. Every. Single. Night. It was so completely horrible. She laughed and bounced around all night, no end in sight. My husband and I took turns but how can the other even sleep well worried about the party going on in the living room? Our girl started to join our world a little more, was less hyperactive, paid attention to a few toys, and we even heard her voice again after she lost it. This new diet? It's on.
We have been on this diet now for over two and a half years with no infractions of major proportion. Until a month and a half ago. There was an oversight in her new environment away from home. They gave her......Animal Crackers. An entire helping. Oh, man. We were so upset. The next day she was spinning in circles and staring at ceiling lights and fans, humming non-stop, refused to let me touch her, laughed when she was not humming, reverted back to her own world completely. We had just gone through a major setback a few months before. At least this one only lasted about a month. Even her teachers and therapists noticed a huge change in her. They all asked me before I even told them what happened. I heard from one therapist after she explained her session with Baylor was not so good (and I told her she had a food infraction), "She seemed more autistic today." Yep.
No one can say if this is going to be as drastic for your child as it has been for mine, but is it not worth trying to see if it helps? It is a non-invasive therapy you can try and there is so much information online you will not be lacking in recipes or support. There is a lot of information on the internet about the gluten/dairy/soy/casein free diet. One of my favorites is www.tacanow.org. It stands for Talk About Curing Autism. Fantastic site, I suggest you all go visit. I also recommend The Thinking Moms Revolution. Google them, too.
No one is saying it is easy. The searching for answers and options, deciding on those findings, fighting to get what you want, actually executing your life. It is an all consuming job. There is never enough time in a day much less the energy. And no one gets it. Nor should they. Some days, weeks or months you feel like you are barely keeping your nose above the waves long enough to take a single breath to keep going before you plunge right back under the water. But the sweet child in your life affected by this condition might really truly benefit from this. You would do anything to help them and this is something you can actually do. And as a side note, when you find the right gluten free products you like, you will find this is not so bad after all.
Much love my friends and keep fighting.
Team Baylor
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