This has been a very emotional week for the Fink family. Several months ago Ben and I spent the day at CHOP with CBS News crew and team of doctors from CAR while they did an MRI study on Ben's brain. On Saturday the news piece aired on the CBS Evening News. Marj and I watched the story in the Howard Johnson's in Harrisburg. It seemed oddly appropriate-I'm not sure why except that she and I have spent quite a bit of time over the years in that hotel. Also we feel very supported by our friends there and so it seemed somehow okay to be there.
If you missed it or want to watch again you can click here.
We would have rather been with our kids to help them understand what they were watching. Ben and Hannah were with my mother-in-law Ethel Goldberg, who did a great job of explaining what was going on.
Reaction has been very positive. I think its hard for people to think of Ben as being "Autistic." I understand since he walks, talks and seems pretty normal. Autism is a spectrum disorder and we are truly lucky to have a child at the highest functioning end of the spectrum. In fact in some ways Ben might be functioning higher than you and I! But he is Autistic. No really. He is. If you didn't believe it before, here it is on the CBS Evening News in 3D color.
I have to tell you from a father's standpoint, it was pretty hard to look at that video and see the leading researcher of Autism in America point to a "normal" brain and then point to Ben's brain and say in essence, and here's a brain on Autism and it belongs to Ben Fink! During this segment, Ben looked at Ethel and said, is that a bad thing? Ethel made the perfect response, "no it just means your brain is different." True enough. Ben barely wanted to watch the report on TV. He does not fully understand his disorder. This makes sense since no one else does either. Ben thinks Autism is a good thing. I'm torn between trying to tell him, no really its not or just letting him feel good about himself.
They interviewed Ben for 10 minutes. I was not in the room because I know that if I had been he would have been been totally distracted by me and asking me the whole time if he would get to play Playstation when he got home. Apparently he said some really interesting things in that interview. More than just his name. Even though he does that with amazing grace.
This week Ben will also be participating in another Next Steps program and this time he is going to deliver a very short speech about himself and what its been like growing up (so far) with Autism. Since most of you won't be at the program, I am going to put the text here. Ben wrote this himself with help from me and his Grandmother, Ethel Goldberg. He also typed it himself and he will read it in front of a group of Autism Professionals tomorrow at CAR.
Ben's Speech for Next Steps
My name is Ben Fink. I am 11 years old. I go to school at Russell Byers Charter School and I have Autism. I live in Philadelphia with my parents and my 8-year-old sister Hannah.
Growing up with autism has been both easy and hard throughout my life.
It is hard because sometimes I panic about things I shoudn’t be worried about.
It has been easy because I do well in school and I get therapies and I memorize a lot of things.
In both school and home I get therapies. I get speech therapy every Monday and Wednesday. On Monday and Friday I get exercise and typing therapy (OT).
I have a social skills group and a fencing class every Tuesday. I have another social skills group and a science club every Thursday. I get a lot of things that help me other than the Prozac. My family and friends have helped me by being supportive. My teachers and my therapists have helped me when I am confused. But the most helpful thing of them all is that my parents love me no matter what.
I don’t consider myself disabled, even though I am different from others.
I am capable of doing what I must do and what I want to do.
I am interested in subjects such as science, history, and mythology when I am in school and in my free time. I am also interested in animals and baseball and basketball. I also like movies and video games. Specifically, I like comedy, horror, science fiction, and action and adventure plus animation.
I have only been bullied once in school but that was a long time ago. Fortunately, my teacher did help me.
That's all I have for now. We are the lucky ones with this epidemic. Ben is a super kid and Hannah is too. There are families out there dealing with much worse than this - either with Autism or Cancer or poverty or unemployment or god knows what else.
Thanks for reading.
Jon
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