Again, blessings go out to my patients. A beautiful, amazing family doctor in my practice was responsible for finally getting us a diagnosis. After relating a family situation, she said to me " you know, I think you have missed the boat here. You should have been referred to a pediatric Psychiatrist." And within days bless her soul, she had taken us on and done just that. We saw Dr. David Shih for a full consultation and at the end of that appointment he looked at me and said " I wish I could tell you no. He needs to be seen at the Glenrose for a full assessment." June of 2010, my youngest son went through two full days of testing and at the end when it was over we met with the head of the team who assessed him and they told us their findings and wished us good luck. My mom and I cried on the way home, and talked about whether or not we should tell him. What were the rules about this? Should they know? Should they not? Would the label hurt or help?
When I got home, I asked him how he was doing. He said fine but that the testing was really hard and tiring. He never once asked what they had found. Days and weeks went by as I was amassing my Autism/ Asperger's library, every table top covered in books. There was not a moment at home I didn't have some sort of article or textbook in my hand. Still he didn't ask. A few weeks went by and out of the blue one day he called to me from the family room. "Mom" he said, " Do I have that hamburger disease?"
"What?"I said.
"Hamburger disease. You know, hamburger disease!"
"You mean Asperger's?"
"Yah, that one."
"Yes, sweetheart, you have Asperger's, but it is not a disease, it is just a different way of seeing the world. Einstein, Bill Gates, all sorts of people that thought outside the box and added amazing things to our society have had Asperger's. "
" Oh, that's good. " Smile.
As I watch his face I think I read a flicker of relief. He has people. There are other people just like him.
In a funny way, we have come home.
Kathryn
When I got home, I asked him how he was doing. He said fine but that the testing was really hard and tiring. He never once asked what they had found. Days and weeks went by as I was amassing my Autism/ Asperger's library, every table top covered in books. There was not a moment at home I didn't have some sort of article or textbook in my hand. Still he didn't ask. A few weeks went by and out of the blue one day he called to me from the family room. "Mom" he said, " Do I have that hamburger disease?"
"What?"I said.
"Hamburger disease. You know, hamburger disease!"
"You mean Asperger's?"
"Yah, that one."
"Yes, sweetheart, you have Asperger's, but it is not a disease, it is just a different way of seeing the world. Einstein, Bill Gates, all sorts of people that thought outside the box and added amazing things to our society have had Asperger's. "
" Oh, that's good. " Smile.
As I watch his face I think I read a flicker of relief. He has people. There are other people just like him.
In a funny way, we have come home.
Kathryn
Kathryn,
ReplyDeleteThis story ties in with the research I did for my masters degree. I studied the effects of self perception on self esteem in adolescents with autism spectrum disorders. A sense of belonging ( "having his people" as you stated) goes a long way in positively impacting ones self esteem.
Another wonderful and inspirational post. Thank you!