It’s been a month. Last Monday I wrote that it had been four weeks and two days, I was wrong. It just felt like it had been a month.
One month ago, on October 16th we began Emma on a GF/(modified) CF/ soy free and a great many other free diet. This is our second go around with this diet. The GFCF diet was the first thing I did when Emma was still two years old, to no noticeable change. However, that first time she began eating a great deal of soy – soy yogurt being her favorite. I was working with a DAN doctor at the time who tested her for hundreds of foods but never said anything about all the soy she was eating. So after three months we took her off the diet and again saw no change. This time I’m working with a naturepath/physician who also tested her for hundreds of foods. This time, the list of foods to avoid was much longer than the first: cocoa, corn, potatoes, chicken egg whites, all red skinned fruits and vegetables, bananas, peanuts, onions and garlic. Emma did not test negatively for wheat, but he advised we take her off it anyway, just to be safe. Oddly, she also didn’t test negatively for sheep and goat’s milk, so we’ve allowed her to have sheep’s milk cheese, sheep’s milk yogurt and duck eggs.
Still we have witnessed very little change in Emma. We’ve grown used to this.
I keep thinking I’m going to find something, something that other families have tried with significant results, but so far, other than Emma’s literacy program, we have not. It’s frustrating to try various things and see little, if any, change. As I’ve written before, we think we are seeing an increase in physical affection, but it’s hard to say this with certainty. We have definitely not seen a profound change of any kind causing us to feel without a doubt that this diet has done anything. Still I will give it more time.
Why some of these interventions work for some children and not others is something that’s been debated for awhile. Why is it some children are mainstreamed after a few years of intensive 40 hour a week ABA, yet for children like Emma, they were not helped? How is it that some children go on a GFCF diet and within days are transformed from a screaming, frustrated, incoherent child to one who is speaking in full sentences, playing with toys in an “appropriate” manner and displaying a never before seen curiosity of those around them?
It is easy to blame oneself, but I don’t believe that is the answer. I know of too many cases where the parent has tried a great many things only to find their child did not respond. I wonder whether it is the children who do respond, who are the exception. While this thought depresses me, I have to wonder whether it isn’t more accurate.
For more on Emma’s journey through a childhood of autism, go to – www.Emma’s Hope Book.com
First let me say thank you for writing this blog. I just happened upon it yesterday, and already I have reread some of them to others and to myself. I feel like your words are pulled from my thoughts. My daughter is 8 and I struggle with the balance between hope when I try some new supplement, diet, therapy, program, etc. and realism. I never want to lose hope, but somehow I also am so tired of getting my hopes up only to have them squashed after something else showed no improvement. Currently I am on week three of yet another new treatment and I am in the holding my breath phase. No great changes have occurred but maybe…… For me, one of the hardest parts has been taking on the role of the observer of all these treatments, trying to sort out what is “normal” challenging behaviors and what is due to her ASD. I observe her life, and my life, my interactions and reactions to hers with such scrutiny that I mourn the days when I did not have to think about checking labels for hidden soy in tocopherols or hidden gluten in oats. But when I am feeling down about such hats I now wear, I realize that as much as I at times curse the fact that I have to keep searching for methods, that I am the one that has to bring all the information together and almost become an expert in so many areas of ASD, I am grateful that I can do these things, that I have access to such things, for having no options would be even more of a nightmare. So for now I will take the disappointment, the anger, the holding of my breath, knowing that what it all really means is that I still have hope. And by the way, my daughter’s name is Emma too:) Thank you again for your inspiring words and courage.
Thank you so much for writing this. It is so helpful and always amazing (still!) when I meet others who are going through such similar struggles. Yours is the 4th Emma on the spectrum, I’ve been told about. (I hope it’s not something about the name!!) Holding my breath. Exactly. I know exactly what you mean. Hoping, always hoping, and then I add to this – oh I shouldn’t have such high expectations – So nice to meet you and thank you again for commenting.
I know how disappointing this has been for you after working so incredibly hard, literally day and night. Just know that you are loved and appreciated and no matter what happens, you have left no stone unturned.
To Richard, my amazing and amazingly supportive husband who by default is now also (almost), gluten free.
Thank you for the love and understanding and words of support.
Autism is different for every child. I dont think it is the same thing. I am not sure how to explain this.
Both my son and daughter have an autism label, yet it is a dfferent expererience for each of them. More so than being two individuals with diiferent personalities. My son seemed to have autism ,from a very early age. My daughter regressed at about 2/2 years very dramatically and suddenly and lost skills. When a toddler she used to help her big brother.Her brother never regressed or lost skills. When diagnosed she presented as a milder case than her brother, now it is obvious she is the most affected, Physically my daughter is very capable and strong, has great coordination. Her brother has poor muscle tone and does not always appear to be aware of where his body is in space, so is very awkard and has terrible cordination . My daughter has huge obsseive compulsive behaviors and becomes easily distressed when stopped from doing these. Her language is very delayed and she struggles to articulate words. Her brother while he has delays in comprehension is a great mimick and can copy what is said. Hecan read and write, his sister can’t. He likes loud sounds, she doesn’t. She has severe mood swings he is more level headed. He is academic but struggles to do every day practical things and needs these broken down into steps to learn. She watches and copies what you do.
While the diet has helped both children I think it has more of an effect on my daughter. Styles of learning that helped my son didn’t help my daughter.
It seems to me Autism is a big mix of things , not just one disorder but they all fit under the triad of having language delays, poor social skills, and the repetitive behaviors.
I think we will find one day that Autism was more than one thing and caused by by more than one thing. For some it may ber genetic ,others environmental or a combination of both. I think ASD is a syndrome rather than one condition. It is why the same treatemts do not work for every individual with autism.
I like what you’ve said here about autism being a mix of things. I agree. It’s interesting hearing you describe the range as it applies to Liam and Ros. Emma is somewhere in between your two. She didn’t suddenly and dramatically regress, but was consider “mild” when first diagnosed. She is extremely athletic, had some language then lost it at around 13 months, but looking back I can see there were massive issues from the moment she was born. Debilitating GI issues, chronic constipation, and as she’s gotten older her rigidity and OCD is more and more pronounced. She can be mimic others, getting even their accents and tone down so that we know who she’s mimicking. But she’s also always had pretty good eye contact, was physically more affectionate than a more stereotypical child with classic autism. Even as I write this though, all of these things, the things people associate with autism do not necessarily point to Emma. The head of her school has always maintained Emma is “atypical,” that is the word we’ve heard numerous times, when specialists see her. I think you are right, one day we will see this as a whole cluster of things.