This weekend we had our fundraiser for our team, Avi's Angels. I cannot believe how generous people were with their money. I was so amazed by the support of or neighbors and friends, thank you to everyone!
Do mind if I tell you a story? We were sitting on small chairs half talking with the doctor, half trying to will Avi to do well on his tests. The truth was, Avi wasn't doing well. He was stuck on crayons and had no interest in the man sitting in front of him. Finally the doctor began telling us some of his history, he worked for so many years in this home for children with autism, he has been a child psychologist for this long and a father of a child with autism for so long. I felt like all of this was building up to him telling us that with authority he could safely say that Avi did not have autism. I was sure he would tell us we had worried for nothing and our lives would go back to the way it was before we ever worried about autism. Instead he told he told us he believed Avi was showing signs of autism. He began to tell us Avi would probably never speak, be potty trained, show affection (I know I've said all of this) and on and on. He told us that he and his wife didn't take their son out for nearly ten years and warned us that we would inevitably need to go to these drastic measures. On and on he went with horrible predictions. Finally he asked if we had any questions and sent us on our way.
I will never forget that feeling. I had never been numb like that before. I looked at Avi through the rear view mirror. He was my beautiful boy. I remember looking at him and thinking he looked exactly the same only completely different. It was as if someone had pulled my sunglasses off and i was shown the glaring brightness of the day. To say I was heartbroken is not nearly sufficient. It was more a kin to heart rending. It was hope squelching, soul baring. There were many reasons we gave him such an unusual name, but none of them were to keep him hidden away. I could not stand the thought of hiding him away from the world or of hiding the world away from him.
Within a week or two I found a new determination. I was determined that even though Avi had autism, autism would not have him. I KNEW we were going to "cure" this. Eventually i was going to write about our experience and call it "Taking Back Avi." I remember writing, "Autism is a powerful force that pulls constantly at a child. To defeat it a parent must not not only fight, but rage against in order to free their child from its grasp."
Eventually that resolution to "rage" against autism gave way to hope. One day after I had gained some acceptance about autism I was running late for school. When I couldn't find a parking spot where I usually park I had to park on the far side of campus. As I walked back to my car that day I realized how close I had parked to the office where Avi was diagnosed. I wondered if there was another family there. I wondered if anyone would be there to comfort them and guide them through. My heart went out to them, whether they existed or not. I later learned a child is diagnosed with autism about every twenty minutes. The chances that someone was sitting in that office, or one similar were pretty strong.
I mentioned how the walk was important to me finding hope again. Our team has raised over $1000 for Autism speaks. This money can provide 18 100 day kits. These kits help guide parents through the first and extremely difficult days. Debbie and I received ours much later than the first 100 days, but I wish we had it earlier. When I meet a parent of a newly diagnosed parent I always tell them to get this as soon as they can. I believe in these kits. I hope that this money will find someone who has lost their hope and save them at least some of the anguish I went through. I hope the money will find someone before their hopes have been completely destroyed. I hope does the good I think it will. I hope again.
(I know I've used this picture before, but they are just plain cute!)