On what is important to self advocates...

Down Syndrome Indiana is in the process of working with several partners to create and distribute a transition packet to families that have an adult with Down syndrome transitioning from high school into the work world. On Tuesday, June 2nd, we held a mock focus group session to find out more about our self advocates and what is important to them during the transition from high school to the adult world. A huge thank you to all the self advocates that participated in our session on Tuesday and also, a huge thank you to the students at IUPUI and the faculty at Riley Children’s Hospital for making the evening possible. Now I would like to share with you what we learned:

On what is important for advocates to do for themselves…

Working is very important whether it be at a paid position or volunteer position.
They would like to live on their own in an apartment or home (but close to their parents).
They need assistance with money management and billing.
They want to have the freedom to be in a relationship with whom they choose.

On when to tell your parents you are in a relationship…
When they are in a good mood!

On what our advocates would like to teach the younger generation….
Self determination
Inclusion
How to cook!
That it is more important to look at abilities than a disability.

On goals…
To be on television

On Fitness and nutrition….
Wii Fit is a favorite!
Parents are the anti-drug.
Nutrition, weight management and healthy eating are important to all of our advocates.
Smoking and drugs are bad.
When it comes to drinking, it is not good but if you would like to know our favorite drinks just scroll down a little more because we are not about sharing family secrets.

On safety…
Don’t open doors for strangers.
Don’t take rides from strangers.
It is important to have emergency contact information available at all times.

On Heroes…
Chris Burke

On our favorite drinks…
Margaritas (not that we drink but if we did)
Green beer on St. Patrick’s day (not that we drink but we are over 21)
Bud Light (just sayin’ it’s a good drink, if we were to drink)

On what they do for fun…
Sports
Talk to friends
Volunteer at Down Syndrome Indiana (yes, it is fun, I am not making it up!)
Work
Cooking class
Swim
Bowl
Make (or was it eat) chocolate chip cookies
Go to the movies
Spend time with their families

On what the heck the meeting was about…
“Sex, drugs and beer.”

And the #1 most important item to our self advocates is: their family.

We also asked their parents what they wished they would have known when their adult children were transitioning from high school into the adult world but that will be in another blog because it’s not as entertaining! Or maybe it is, you will just have to visit again next Thursday to find out….