April 14, 2008 7:12 AM
Taking Daniel to Dr. Capone today
It's cold again today - glad I never found the time to do the big wardrobe switcheroo.
I'm off to Baltimore this morning with Daniel to visit Dr. Capone at the Kennedy Krieger Institute, which is part of Johns Hopkins University Hospital.
Daniel has Down syndrome, but he is really much more complex - and always has been. It's been interesting having four sons with Down syndrome (I always feel like I have to say that three were adopted to clear up any misunderstandings) from four gene pools. Longtime readers here know that one of these four sons has a dual diagnosis of Down syndrome/autism. It was a long journey figuring that out. Here is a link that has a roundup of information on Down syndrome/autism.
Dr. Capone is a kind and gracious man who is considered the expert on this subject. He diagnosed Jesse last year after studying his case and spending a lot of time with us. Having the dual diagnosis has been helpful in dealing with the school system to get the proper support for Jesse - whom they just wanted to categorize as "profoundly retarded." Individuals with Down syndrome are usually outgoing socially pleasant people. When that's not the case, we need to find out what else is going on.
Daniel has other issues going on. He's never been just a kid with Down syndrome. For one thing, he's very wiry and very strong. He's very smart. He's not randomly social. He stresses about a lot of things. And sometimes he just can't handle being around people at all. So we are on our way to Dr. Capone's to find out why and how we can better help him. Will let you know more later.
Baltimore is a couple hours away - including traffic. The series of evaluations scheduled for Daniel will take up to four hours. It will be a long day and I'm exhausted thinking about it. But I haven't had a cup of coffee yet.
Please pray for Daniel and me and for our trip - for wisdom and insight on the part of the specialists. For stamina and courage for me. And most of all for God's blessing on Daniel.
Hoping to be home in time to take the kids to CCD - we have a wonderful teacher who has experience in Special Ed who is teaching them about the life of Jesus using a very hands-on curriculum to prepare them for the sacraments. The Mass has already had a very mellowing effect on Daniel.
Will post more on this later if anyone is interested.
Posted in Autism, Down syndrome, Family, My life | Permalink
Comments
Hi Barbara! good luck with the drive; I don't envy you with that. I, for one, would be very interested to learn more about special-needs focused catechesis. Insight like that could help so many people educate their special learners about the most important topic of all. :)
Thank you so much for all the wonderful wisdom you bring to my life!
Posted by: Kate | April 14, 2008 12:01 PM
Hi Barbara, I just had an appt. with Dr. Capone yesterday with my 19 year old son, Michael who has Down Syndrome. Thank you God for bringing Dr. Capone into our lives!!!!! Jennifer
Posted by: Jennifer Davis | November 22, 2008 11:05 AM
