I am still reeling from this morning's conversation my husband, Richard and I had with two specialists in the field of stem cell research.
We began a blog as a document of our autistic eight-year-old daughter Emma's progress, or lack thereof, after her first round of stem cell treatments this past March, but also as a way to document our own struggles as parents in finding help for her. We made the decision to try stem cell treatments on the advice of two specialists working out of a prominent hospital in New York City. So our conversation this morning was all the more troubling as these two specialists, also from a prominent east coast hospital, felt strongly we must stop the stem cell treatments immediately.
When our daughter, Emma was diagnosed with autism she was two and a half years old. It was clear to me something was wrong, but we didn't know what. Because autism is so poorly understood and because it covers such a massive range of behaviors, no two autistic children are alike. The "tell-tale" signs of autism, the few I was aware of back then, did not fit Emma's profile.
We have tried many, many different therapies -- physical, behavioral, medical -- with the hope that something will help Emma. Many of the therapies we tried we heard about from other parents of autistic children who were helped -- the same therapies that did not help Emma. There are a few things, in retrospect, I would not have spent our money on, but there are many more things we tried that I would have done even knowing what I know now, even though they didn't appear to help Emma. Such as the homeopath I took Emma to for 10 months. Who knows whether our "detoxing" of heavy metals helped? Or the cranial-sacral therapist I took her to for over a year hoping to alleviate her chronic constipation.
I know it must sound crazy to any medical doctor or even to any science minded person because there's simply no "science" to back up many of the things we tried. On the other hand there is so much more we don't know about autism than we do. Desperation makes for odd decisions, and perhaps one can explain everything we've tried and done by simply leaving it at that. On the other hand, unless one is a scientist, and most parents of autistic children I know are not, how does one choose what will help one's child when all we have to go on is anecdotal evidence?
A friend of mine called just now and asked how everything was going as we returned from Panama only two weeks ago where we had gone for Round 2 of Emma's stem cell treatments. See here for more on our trip. I recounted this morning's conversation, our concerns and worries, and then said, "It's just another typical day for us."
And it is.
Typical in that it is an endless emotional roller coaster, typical because we have more questions, typical because there is no cure, typical in the degree of frustration we so often feel.
But Richard and I are tenacious and stubborn and unwilling to accept no as an answer. We continue to research, try new things and hope.