Tonight we went to our first actual regular meeting of our local DS group, Down Syndrome Network (DSN). We had been to the group's picnic last summer in June, but we hadn't gone to any of the monthly meetings since then. We haven't really been sure what we expected from being involved in the group or what we could offer, so I suppose we just haven't moved forward.
Last month, we went to a Parents' Night Out event with the group and got to know Jen and Mark who told us they attend the meetings. It's always nice to know a familiar face at a new place, so I decided I'd give the meeting a go this month. Wouldn't ya know, I opened my big mouth earlier this week about maybe starting a 0-3 playgroup among the group, so I even made the agenda on my first meeting....name listed and all!
It went well, snowy weather aside, and I was glad to get to see the kids again, meet some new parents, and find that we should have at least 4 kids at our first playgroup date in a couple weeks. That's exciting, I think. I was kind of nervous about the whole thing, but it ended up being a nice evening.
Each month they have a short program of some kind. There were two ladies there who told of their daughters in their 20s with DS and how they are doing after transitioning to the adult world. They are both working and have been to college, one of them lives alone in her own apartment and is getting married next month to her high school sweetheart who does NOT have DS. The other has a boyfriend and travels around town on her own via our mass transit system. They both sound like wonderful girls, and I hope to meet them one day.
There was also a woman there who talked of her brother who has DS, is 42, and has had a very different experience. It's amazing to hear how horrible the things that were said to her family were when they chose to bring him home to raise him with the family. He is the 5th of 7 children and the parents were told that if they planned to raise him at home they needed to send the other children to live and grow up with relatives so that they wouldn't be ruined socially. They actually were told that no one would want to marry their daughters (his sisters) because they had him in their family. But they chose to raise him anyway, and he still lives with his 70+ year old mother now. He is nonverbal and not independent, but he is still her brother and has been a valuable part of the family.
Things have changed so much, and though we have a long way to go, especially since 88-90% of mothers who receive a prenatal diagnosis of DS choose to abort, I'm thankful that Braska's opportunities for the resources she needs are as available as they are.
For those of you that read this blog regularly and don't have a family connection to someone with DS, THANK YOU for supporting us and taking the time to see how life really is. I hope you can take the opportunity, when faced with one, to tell someone of what you've learned about how really plain-old regular life can be. Even in the midst of therapy and doctors, we play, love, and grow. I really believe that it's that kind of word-of-mouth sharing and learning that will change the way our society values these children and adults.