Every other year the National Association for Down Syndrome has a conference in their home base of Chicago. Until 2006, when we relocated from the Chicago suburbs, I volunteered or attended every conference. The bi-annual conferences were full of information about resources, the latest news related to down syndrome and most importantly other parents.
What was really great though, was the teen/young adult conference that was held concurrently. I used to sneak in to see these self-advocates, wondering what Alex would be like and what these attendees were doing. I found it encouraging and a glimpse into a promising future that seemed so far away.
But it was not that far away, this past weekend Alex and I traveled to Chicago to attend this very same conference and Alex attended the concurrent conference. I love Chicago, we have family and great friends there and any excuse to visit works for us. The weather was perfect and I was able to catch-up with a great number of people and shop!
We live in a rural community and Alex only knows a few people with down syndrome. She has connections across the community and participates in learning opportunities with other young people with disabilities. I never really thought much about this until the agenda for the self-advocate conference was published and realized it was geared for people with down syndrome, not developmental disabilities. The topics included nutrition, resume preparation, exercise and a final dance party. All topics that are important to people with down syndrome.
As I thought about Alex and her desire to be in the community, doing things that the rest of the community does and feeling included, I recognized that is just part of Alex. Alex also has down syndrome and is part of that tribe. She does not often have the chance to meet people from her clan and it is an opportunity missed. Down syndrome is an ethnic group to Alex, just like she is a Special Olympian, a Coloradan, a Hughes and a Bender, she is also a person with down syndrome. This is a unique distinction between Alex and her peers and is something we will learn to honor and include in her life. Although Alex is 19, she is only 19 and there is still a great deal of growth on my part as her parent and on her part as a young adult.
Yes, I learned a lot at the conference about Alex, myself and our DS community. Alex also learned and this time I could not sneak in to watch. Instead, Alex shared that it was awesome, a young man hit on her and kissed her on the lips. And as Alex explained this was because she is “hot”. Am I really ready for this?
And best of all……Alex got to reconnect with her BFF Sarah.
5/31 Myths about Adults with DS
6/31 Meet Alex