So far today has been all about grocery shopping + more pumpkins + emails (playing big time catch up). This week I am trying out an entire menu from Everyday Food - took the magazine with me to the store and just went right down the list. Making this one tonight.
Chris and I wrote up the following together today as we reflected back on the show:
We had a chance to watch Jenny McCarthy (and Holly Robinson Peete) on Oprah. So many things we can relate to in both of their stories. Lots of emotions and memories as we watched. We both made comments throughout the show to one another – many in agreement and some questioning.
Here's what we think was good: continuing to talk about autism and all the different treatment options (especially the biomedical options). General awareness is so important as early intervention can make such a big difference. Being on Oprah is a huge audience and opens to door of basic information to so many more people.
For many of you who watched it may be the first time you heard about the diet (gluten/casein free – GFCF). We started the diet almost immediately after Simon was diagnosed. In many ways it simply gave us something to focus on and we figured we might as well give it a try.
In Simon's case we did not see much of a difference after removing gluten – we did notice that his runny nose stopped after removing the milk. I have read many stories (similar to Jenny's) in books (and more books) and online where removing gluten has made a huge difference in a child's behavior – including improvements in speech, eye contact, stimming, etc. If you are interested in reading more, Talk About Curing Autism Now is my favorite site for information (including a fantastic getting started guide). They also have a page with a bunch of different diet links.
The diet is challenging (and can get complicated if you need to also remove soy, corn, rice, etc – you would find this out after testing with a DAN doctor), but completely worth a try. There really is no one-size fits all approach for any of this. If you are interested in trying some of the biomedical interventions (such as the diet) I suggest you hook up with a DAN (Defeat Autism Now) doctor. It is a day to day journey to say the least.
At this time Simon is not on a gluten free diet. It may be something we will try again in the future if we begin seeing more complicated behavioral issues and/or regressions.
Another topic that came up on the show, and one that is very controversial, is the subject of a link between vaccines and autism. In Simon's case we did not notice any visible difference in him before and after his shots. But in reality we don't just don't know. No one knows. Having said that, we do not discount other parents who feel from direct personal experience that there is a link between the two. If you were to see an immediate change in your child from one day to the next with your own eyes you may suspect a link as well.
After lots of thought and discussion (and some prayers), Simon did receive his vaccinations to enter kindergarten – but only after we personally inspected the ingredient lists to confirm that they were thimerosal free (mercury-containing preservative). According to the CDC, "Today, with the exception of some Influenza (flu) vaccines, none of the vaccines used in the U.S. to protect preschool children against 12 infectious diseases contain thimerosal as a preservative." We are not anti-vaccine. We are simply parents who are trying to do the best for their child.
We do however agree with Holly Robinson Peete's comment that while the Center for Disease Control may not agree that there is conclusive evidence to suggest a link between autism and thimerosal, at least we should talk about whether a one size fits all vaccination regimen is suitable for all kids. As autism has shown us in the most personal way, these kids are all unique – every child, with autism or not, is unique. They say that if you've met one kid with autism, you've met one kid with autism…you can't draw conclusions about one by what you have seen with others. That seems to be true not only for symptoms, but for treatments as well.
No one knows what causes autism. Our guess is that it is the result of a combination of factors – perhaps exposure to something in early childhood environment that only affects those kids who have a genetic predisposition. But again, who knows?
We are not a researchers, we are simply parents to one fantastic little boy. As parents, our main focus is Simon and how we can help him be successful in his life (in whatever that will mean for him – right now he wants "to go to college" and be an astronaut). Our day to day experience is one of much joy even in the midst of all kinds of crazy challenges.
The bottom line for us: he is one awesome little kid.
As you think about leaving comments, please be respectful of one another's thoughts and opinions. These are sensitive issues with all kinds of different angles. A simple google search on any of these topics will lead to massive amounts of information producing arguments both for and against everything related to autism (enough to make you want to hide out for days rather than forge ahead).
Peace be with all of you who are on this journey right now.