Post by wrblack on Mar 21, 2005 11:27:22 GMT -5
Happy Birthday, Russell. Hope yesterday was a great day for you, and your mom and your whole family. And thanks for sharing, A. That was a good read. Though it seemed to me you glossed over the cataract business kinda quickly and easily.
I remember pacing the hall during Charlie's first surgery, saying I'd much rather be doing this than open heart, but still lots of concern and worries. And then just Saturday I was crawling around finding a contact lens, once again.
By the way, A., something you might appreciate from Dr. George Capone's presentation at CHOP a week ago Saturday. Over the years he's seen lots of kids with Ds, mainly at the Ds clinic at Kennedy-Krieger. His observation is that while kids with Ds are not "typical" there is sort of a "typical kid with Ds" and about 75% of our kids fall into that category. He also thinks there are about 10% of kids who are above that category. I guess those are the ones that lots of people refer to as "high functioning." I tend to think of Chris Burke and Mia Peterson and quite a few others.
Then there's the other 15%, and those are the ones Dr. Capone sees most at his clinic. Ds with autism and/or ADHD and/or OCD. And I guess "low functioning" would sound better than severely mentally retarded.
At our pre-op visit to CHOP last Thursday, the nurse practitioner, in taking history, said something to Charlie about, my, you must really like collecting all these labels. I guess the list was adding up, Down syndrome, visually impaired, hypothyroid, autism, asthma, obstructive sleep apnea. I just smiled. But what I thought then, and have often thought before, yes, well, lots of labels and dx's, but at the end of the day, me and his mom are the ones who get to take Charlie home with us. And we like that arrangement just fine. Sure, I wish he had a few things less to deal with. But he's really a great little guy. And whatever labels and dx's we collect, our plan remains the same, just want to try to help Charlie be the best Charlie he can be, and live a long and happy life.
Well, sorry to be tardy, and so longwinded, in sending birthday greetings to Russell. We wish him a long and happy life, too. And wanted both of you to know that you are not alone, far from it.
-- Bob
I remember pacing the hall during Charlie's first surgery, saying I'd much rather be doing this than open heart, but still lots of concern and worries. And then just Saturday I was crawling around finding a contact lens, once again.
By the way, A., something you might appreciate from Dr. George Capone's presentation at CHOP a week ago Saturday. Over the years he's seen lots of kids with Ds, mainly at the Ds clinic at Kennedy-Krieger. His observation is that while kids with Ds are not "typical" there is sort of a "typical kid with Ds" and about 75% of our kids fall into that category. He also thinks there are about 10% of kids who are above that category. I guess those are the ones that lots of people refer to as "high functioning." I tend to think of Chris Burke and Mia Peterson and quite a few others.
Then there's the other 15%, and those are the ones Dr. Capone sees most at his clinic. Ds with autism and/or ADHD and/or OCD. And I guess "low functioning" would sound better than severely mentally retarded.
At our pre-op visit to CHOP last Thursday, the nurse practitioner, in taking history, said something to Charlie about, my, you must really like collecting all these labels. I guess the list was adding up, Down syndrome, visually impaired, hypothyroid, autism, asthma, obstructive sleep apnea. I just smiled. But what I thought then, and have often thought before, yes, well, lots of labels and dx's, but at the end of the day, me and his mom are the ones who get to take Charlie home with us. And we like that arrangement just fine. Sure, I wish he had a few things less to deal with. But he's really a great little guy. And whatever labels and dx's we collect, our plan remains the same, just want to try to help Charlie be the best Charlie he can be, and live a long and happy life.
Well, sorry to be tardy, and so longwinded, in sending birthday greetings to Russell. We wish him a long and happy life, too. And wanted both of you to know that you are not alone, far from it.
-- Bob