Saturday, July 31, 2010

False hope vs False Despair

So, I have this moms board that I frequent, that has been one of my primary sources of online support the last couple of years. Its a diverse group, and for the most part pretty respectful of each others choices. There's a particular woman on there who I've gotten into it with several times now about our choice to see a DAN doctor for Dominic. Our most recent "discussion" was about the recent study published about the monkey experients going on in PA. That discussion led me down an interesting rathole. I posted on the autism parent board I frequent as well as a couple of my yahoo groups asking how many people got discouraged when they heard such passionate diatribes from people who honestly believe that the biomedical movement is hurting our kids. And I mean passionately, firmly grounded in blinders-on mainstream medical.

And i got a whole range of responses - the one that stuck in my head was that given the choice, its better to have false hope than false despair. With false hope, there is a light at the end of the tunnel, and there are things to try, and there are options. With false despair - there is nothing. If we had believed what Dominics first pediatrician said - that the only thing we could try was ABA therapy and we couldn't afford that so don't bother... that gluten free casien free diets and vitamin supplementation were ineffective and a waste of money - we would have been beaten down by despair.

The last time we talked with Dominic's neurologist, who is the best pediatric neuro in Colorado Springs, I specifically asked him his opinion on the biomedical movement in treating autism. His response was that he didn't have an opinion because there simply wasn't enough research. He's absolutely right - this is a paradigm shift that is in its infancy. Certainly its no older than a decade, maybe 2. Doctors aren't taught about it in med school... Many aren't ever exposed to it.

In the past 2 weeks, there've been 6 deaths around ASD diagnoses. A double Homicide, an autistic man forgotten in a hot van by caretakers, a drowning, and a murder-suicide. The drowning and the institutional neglect are unspeakably horrifying. But what is unfathomable to me the people, the parents, who have had such a high level of despair that they killed their children rather than seek treatment that is out there. That they weren't able to find hope, but instead were buried in despair.

So, yes, what we are doing for Dominic is not a clearly laid path. There are not clearly defined treatments that are sure to work. Yes, there are things out there we have tried that may or may not be safe because they're TOO NEW for there to be enough data on them. Yeah, thats kind of scary, but the option to wait quietly for studies to be done and do nothing is not acceptable. So we try very hard to research everything suggested before we try it. And we do due diligence in comparing notes with other parents doing the same thing. And we question EVERYTHING. And we become advocates. And we learn far more than we ever wanted to know about things very far outside the realm of our comfort zone. Because we trust no one with letters behind their name anymore.

So when we find a product intriguing, we proceed to have a 5 day email conversation with their customer service until they send us the copy of the lab results of the mineral levels in their product and a weeks worth of samples. And have a parallel conversation with our nutritionist, who engages a whole slew of other people, before we decide that we will give it a trial after we finish the current open bottle we have of multivitamin. If this works, we'll be replacing the NDF+, multi, vit C, zinc, and lithium.

So, its a good thing to have hope. Even if it should turn out to be false hope, its not despair.


Anonymous said...

Hi Joy. Just wanted to let you know I've been here and I'm thinking of you. I have nothing useful to contribute to a discussion, but I want to tell you that I admire your fierce commitment to Dominic and to building hope. Hugs to you! Christine V (heveasoul)

Anonymous said...

Great post, Joy! I "know" you from the biomed board. Our children are not hopelessly predestined to fail. Never, never, never give up....