Managing Editor's Note: This piece is part of a series of recovery stories presented by Generation Rescue. The introduction rings especially true to me. Two of my girls were diagnosed by a colleague of Dr. Max Wiznitzer at University Hospitals of Cleveland. He's the "expert" on autism in Cleveland, especially if you're a pharmaceutical company in a vaccine trial looking for an expert witness for the defense. We left that office with absolutely nothing except a bill and two little girls whose lives had just been written off by a neurologist. Seems it happens everywhere. And I'm sure it's still happening.
At the age of three, having come to the conclusion that our son would most likely be diagnosed PDD-NOS, we wanted to take him to "the best" doctors for their opinion.
We ended up at Johns Hopkins' Kennedy Krieger Center, seeing Dr. Andrew Zimmerman who was considered one of the leading autism experts in the country. This was the biggest waste of time and money we have ever invested in anything. Zimmerman told us Noah was probably mentally retarded, would never talk and would never be much different than he was at that point.
With a wave of his hand he brushed off aggressive therapies and the notion that vaccines could have caused Noah's misery. Treatment? Get therapy for YOURSELVES, he said, to learn to deal with what you have.
Noah is now 10 years old. To be sure, I would not consider him fully "recovered" -- yet. However, he has extensive expressive and receptive language (he can say anything he wants and we believe knows more that we can imagine). He has at least a normal to high IQ; his speech teacher cautioned us to "never underestimate his intelligence."
Noah participates in "typical" swim team, enjoys riding his bike and scooter, attends church choir, and does gymnastics. He recently won first place in the RA Pinewood Derby Car Race for our church and went on the win first in the entire Association. He loves books and reads well. He loves geography, knows all the states, can draw the US and label each state correctly, as well as name them aphabetically. His passion is drawing (and he's very good!) and music.
Treatment? Yeast overgrowth treatment, GFCF diet, Chelation, AIT, ABA, Speech and Occupational therapy, and Hyperbaric Oxygen therapy. The three most effective were Chelation, ABA and Hyperbaric (started only in Fall 07). We hope that hyperbaric, along with continued chelation, will help him jump the final hurdles to gain recovery.
I thank God often that my husband and I walked out of Johns Hopkins that day, looked at each other and said "NO WAY are we giving up", and promptly found a DAN doctor. An "expert" is not always an expert, particularly in today's medical community. In the life of an autistic child, the parent is the foremost expert! The above is just a short summary of the fullness of Noah's life. I could never describe how different life is for our entire family today than it was when we had that poor, frustrated, hurting, physically ill, non-verbal, misunderstood three-year-old child that we literally could not take anywhere. Never give up! Never give up!
This and other stories of recovery can be found on the TESTIMONIALS page at GenerationRescue.