So, finally we got ourselves in to see the local DAN (Defeat Autism Now) doctor in Ventura. It was several years in the making. We had heard about these practitioners and varying degrees of satisfaction with their results from other parents. Bear in mind that all other reviews were for doctors in other areas, Los Angeles, Orange County, other parts of the country. This doctor was different, he didn’t bleed us dry as some of the other parents had complained and had been a deterrent for us for a while, especially with two boys. On more than one occasion we’ve had to decide who needed to go worse at the time. Our doctor even gave us a 2-for-1 special!
Cost aside, we have been trying to educate ourselves for going on 4 years – (wow! it doesn’t seem like autism has been a part of our lives for that long). We’ve looked at all of these things that could be underlying causes of the behaviors. I’ve read up on gluten free/casein free diet, candida, chelation, B12 shots, and many other biomedical interventions for a while now.
Try finding a pediatrician or regular family practitioner that will acknowledge that there is any merit to doing these things that doesn't look at you sideways, completely crazy, or totally stupid. It can be an incredibly degrading experience to ask a doctor about many of these things. They make you feel as though you don’t care about your children that somehow you are the one doing something wrong, or that just can’t cope with the fact that you have a child with these issues. There is a real apathetic tendency in many of the doctors I have come across in the course of the last 8 years to write off your concerns as a parent, or dismiss your ability to intuitively know whether something makes sense for your child.
All of this has caused me to come the realization that we have to break a stigma. Our society has this notion that doctors are all knowing. The most refreshing thing I’ve come across in recent years is a pediatrician who is open to the fact that we don’t want to risk vaccinating our third child with the first two being on the spectrum, and hearing him admit he doesn’t know much about autism.
Let’s face it – most of these doctors have been practicing as long as I’ve been alive; in some caseses longer. It begs the question whether any of them have picked up a book in as long – or whether they realize that there are still people out there that have critical thinking skills and can read and don’t always accept the first answer given to them. Mainstream medicine including doctors, medical practices, and hospitals are making decisions based upon what is in their best interest financially – not the best interest of their patient’s health. That however is a topic for another day.
The point I am trying to make here is that we as parents have a responsibility to be the advocates for our children to ensure the best possible care and best possible results for our children. No one is going to look out for them the way we will as parents. It has been my answer when people have asked me about doing the diet, and it holds true of any and all therapies. Don’t rely on anyone else to tell you something is or is not working for your child. You know your child better than anyone.
If anything, after our visit to the doctor I feel a little guilty. I feel like we sat on the information that we have slowly gathered over the past few years too long. It almost feels as though we should have done some of these things sooner. We knew they needed to be done, or something needed to be done. The reality is that critical piece was missing; the support and reassurance from a professional that respects and acknowledges our concerns and observations as parents.
Time will tell how these treatments go for the boys. They are now 7 and 5, there are still a few critical years of development to go, with luck and a great support system we’ll turn them around and make a difference in their behaviors, their social lives, and their futures.
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