Tuesday, August 7, 2007

Self-Advocates with Down Syndrome

One mom said she's sure that extra 21st chromosome contains the "dancing gene." They've ALL got it! :-)
Hugger sings one of his favorite songs.

This weekend, our family went in two different directions (sort of), with three of us going to KC, and the other two on to Nebraska. Father and Whistle were blessed to attend the ordination of Brother Jesse Halbgewachs in Nebraska. Jesse's parents have been very dear friends of ours since before we were married. They were then a young married couple with small boys, and we loved them dearly (and still do!). Besides the love of the Lord in common, they have fostered children at risk for many years, and we love to get together with them. If you're interested in the meeting and a few photos, Liz has some up on Abundant Grace.

Before the ordination was scheduled, Hugger, Teenager and I had made arrangements to attend the annual conference of the National Down Syndrome Association. In addition to the regular informative sessions for families of persons with DS, they provide great sessions for youth and adults with DS, and another one for siblings, also. Since Teenager did not grow up with Hugger as her brother, we thought it would be very good for her to get to know others who have experiences similar to hers. Both groups, Self-advocates (persons with DS) and Siblings had two days of sessions. One day was informative, the other more for fun.

Teenager had a great time sharing with the others in attendance and learning from them; hearing from Karen Gaffney, a self-advocate who has swum the English channel; and the author of The Memory Keeper's Daughter, a novel about a pair of twins, one of whom has DS. (That's one of the books on my nightstand -- I'm hoping to absorb them as I sleep, but it doesn't seem to be working! Teenager has read it though, and was surprised by the author's appearance at the conference.)

I've attended the full conference in the past, but this year I was blessed to volunteer with the Youth and Adult group. Three years ago we wanted Hugger to attend, but they were short on volunteers, so I offered to help then. I discovered that's where the fun is! We haven't attended since then, but if it were up to Hugger, we'd go again next week. They have a great time, and it's very inspiring for them as well as the rest of us. This year I was at a table of 9 self-advocates, and had a blast! The session speakers and worshops are all presented by people with DS, and it's a wonderful experience. There is also a talent show, and some of the talents are amazing. From low to high skill levels, every person is valued for their contribution, and it's a wonderful experience for all. We saw and heard pianists and instrumentalists of all types, lip synch performers, actors, singers, dancers, and many others. It was very uplifting and fun, fun, FUN! Hugger started saying, "I want to go back, next year," shortly after we arrived. Next year it will be in Boston, so as great as that sounds . . . . we'll have to see. Boston is not exactly in our back yard.

We lived in the KC area when Hugger was a pre-schooler, and we looked for old friends from his early years who might be there. The mothers of his ECSE (early childhood special ed) class became very close, and we've continued to stay in touch once or twice a year since then, so we were anxious to renew acquaintances. I've seen some of MY friends, but haven't seen their children in a long while. It was fun for Daniel to renew his own friendships, too. He didn't actually remember them specifically , but they all are familiar with discussions of those times in their lives, and had hugs and high fives all around.

So -- whether in Nebraska or KC -- as they say . . . "A good time was had by all."

Hugger's friends from his pre-school years! Reunited, as if they'd never been apart.

Another friend from pre-school.

A new friend from Hugger's table at the conference, and the table sponsors.

Teenager made a friend during the sibling conference, and (surprise!), he's the younger brother of one of Hugger's friends from pre-school, above! How likely is that, in a group of 250 people?! (Odds of 3/250 to be exact.)

1 comment:

strem said...

The interactions sound so sweet, and it sounds like a conference I'd love to visit sometime. The sessions were surely inspiring! I'm sorry the family was separated those days, but I am glad you had a wonderful time.