Hi Meg - we lived in Seattle too. I wanted to get to know some DMD boys around my sons age - for my son...so that he can maybe see that other boys have muscle issues too. How old is your son and where do you live in Seattle? Would you be willing to get together? My home email is firstname.lastname@example.org Thanks! Char Burke
Yes Conrad did have an assistant during college which was provided by the Department of Vocational Rehabilitation. It was very helpful and gave him greater access and inclusion in many college related events, clubs etc. DVR gave us the choice of finding our own assistant (then having them sign up with a home health care agency) or the home health care agency offered to provide the assistant. We found that Conrad preferred finding his own assistants (younger, sometimes even was a college buddy who needed part time work), etc. When it gets closer would be happy to share our experience if that would be helpful.
I am glad your son is enjoying his Permobil with the elevating feature. Honestly I don't remeber about the armrests, so much of Conrad's chair had to be customized that I have kind of lost track of everything we did to make it work well for him. I am sure that you could have longer armrests if your son needs them :-)
Hope you are well,
My son just got a new Permobil with an elevating feature he really likes it. He can get closer to eye level when talking with people. Makes for a more meaningful conversation. In group settings he can elevate and see better, etc. Hope this helps.
Yes, after age 18 the parent may be paid as a personal attendant--how much mostly depends on the individual program he is on, Roy is on a program for disabled that can work and direct their own care. He does need a lunch aide at work who usually works 3 hours a week-day.
The MAW trip to DC was fantastic. Roy had asked for special tours through 2 of the museums, but they threw in a lot of extras. Your son will be surprised at every turn. I wouldn't want to spoil the anticipation. The MAW people will ask him what he particularly wants to see in DC--for Roy it was the Aerospace Museum.
AS to WC, Roy hasn't had a midwheel drive yet and really doesn't think he wants one. Getting over thresholds and up ramps may be a slight problem. He now has an Invacare Ranger X. After spinal surgery the ability to recline is a must.
Would be happy to answer any questions you might have or make some suggestions on things we really enjoyed seeing when Conrad wasn't working on the hill. June should be a good time weather wise as well, not too hot and humid yet...
My son has just decided on DC for his so we are getting the process going....any suggestions? He had a very tough time limiting his choices to 6. :} Your son is truly an inspiration. Let me know if you have any suggestions for our trip?
Meg--my son's Make A Wish trip was to WA DC. What a trip!! We had special tours of some of the museums and a limo took us to all the hotspots like the WA monument and Viet Nam wall. The MAW people with us were just as excited as we were. We ended with a personal tour of the White House with my son holding the presidential cat Socks. Little did we know we would be going there again in a few years when my son won a national scholarship. We are ready to go again, although it would be hard to travel with a vent (non-invasive at this point).
I am responding to your question on the photo of my son Conrad. Conrad is a senior at Seattle Pacific University, majoring in History and Political Science. The summer of 2007 Conrad was an intern in D.C. for a U.S.Senator. He loved the experience and this past summer he interned in the District office of a U.S. Congressman. You will love DC it is very accessible...
Let me know if you have any questions as you plan your trip I might be able to make some suggestions :-)