Hi,

I have been an advocate for 25 years for my son - who was born with Down syndrome and developed insulin dependent diabetes when he was 7. He has grown up to be a bright and interesting adult who had a whole set of plans and goals that were different and more wonderful than I expected when he was young. Recently he has mentioned that he does not expect to accomplish some of those goals, and he is losing interest in doing things that were part of his plan to get to them.

Participating in ordinary life was much different when he had school and extracurricular activities with mainstream friends as well as others growing up with childhood disabilities.

It is a bit of a struggle now ~ managing the paperwork associated with his support programs, the expense of maintaining guardianship, and the restrictions on where he lives and travels seem to be narrowing down his options as well as mine.

Reading different perspectives than other caregivers would probably give me more ideas on how both our lives could be more ... ordinary? Extraordinary?

I am looking for inspiration or at least something that will add a bit more humor and joy to the daily grind. As the new school year starts we are both thinking that nothing new has happened in our lives for a while.

TIA

Pam W
SE of Seattle

Hi Pam. I'm someone in high school with cerebral palsy, and I get that life can be difficult. I know it can be hard. I know how it hurts. I would just encourage you and your son to look at his interests and see if there are any opportunities in his school or community. With me, I had to push the school into changing and modifying programs I wanted to be a part of. Start with that and then tell me if you need more help. Rob

Pam,

Are you active in your community's Arc or Down's Syndrome groups? What about the Council on Developmental Disabilities in your state? Here's the link for Washington's Council on Developmental Disabilities where you and your son can become more active advocates on a state level and meet others in your situation. There's also a book a friend of mine whose daughter has Down Syndrome suggested to me as well. Here's a link to a review of that book called, "I Just Am: A Story of Down Syndrome Awareness and Tolerance" by Bryan and Tom Lambke.

Also, try an exercise with you and your son together naming three things you are grateful for in your life. This is great, not only for Thanksgiving, but every day of the year, as we self advocates and our families get bogged down by the barriers that still exist in our lives.

I hope I was helpful to you.