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!)
5 comments:
Diagnosis Day is always devastating, even if you are expecting it. I am so happy that you decided to rage against autism. I've found that there is hope. There are those moments there that just make it all worth it. Those times are the ones that I hold onto and remember when the difficult days come. Hurray for Avi! and Hurray for his parents! Keep up the good fight!
What a great post. As you described all of your thoughts and emotions after Avi's diagnosis, I felt like I was reliving the day that Boston was diagnosed. It's hard. Doctors don't make it any easier. It's like they're trying to prepare you for the worst, but in the process, they forget to tell you the endless possibilities. We never recevied one of those 100 day kits, but they sound really great. Someone needs to help these parents, to give them hope. If those kits can help, then I'm all about it. Congratulations on the fundraiser!
Yep, I remember the day that Boston got his diagnosis. (This is Neil talking now--just so you know) I remember feeling like my son had died, like I had lost him to autism and his little body would grow up a robot controlled by autism. Heart rending is a very accurate phrase. Even though we were anticipating the diagnosis, it was so hard. We both went home and cried. Now, there is so many benefits we've gained from autism. But it is because we battle and rage against it. Keep fighting!
When you told me Avi had been diagnosed with autism, you didn't tell me all the dire predictions they gave you, and it's only been in the past year or so that I learned just how the doctor delivered the news to Debbie and you. I am very glad that you have taken the ball and run with it, as unwelcome a ball as it was. You are making the world a much better place for the children with autism as well as their parents. Don't give up this good fight. As I watch you and Debbie go about doing all the things you must do and then going even further with the walk and the fundraiser, it's just inspiring. Avi is a precious little guy, and he and Itai (who is equally precious) are fortunate to have you and Debbie as their parents! I love the pictures, by the way, and you're right -- they're just so cute!
Tell us more about the 100 day kits. I don't think you actually mentioned them before this post.
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