Thursday, February 21, 2008

Mommy life: First DSN meeting

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.

8 comments:

  1. how exciting that you are getting connected to even more resources and friends...the play group will be wonderful for all of you I am sure!

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  2. How cool! It is so hard to find a good playgroup...kudos to you for starting one! Abortion makes me sick, why would anyone in their right mind, let alone 85-90% abort their child with DS?? God intended for us all to be unique and different...HE does NOT make mistakes. These lost little ones would have been an important part of our world. So sad. People need to stop seeing children as "a diagnosis" and see them for what they are....kids.

    With love and hope,

    Jen-William's Mom

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  3. Jessie--I think it will be good, too. I'll be glad to get the first one out of the way so we're comfy with each other.

    Jen--Amen. You stated it well. It is very sad that so many parents rejected the joy that was gifted them.

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  4. RK, What a wonderful post. God created ALL of our children in HIS image... and I know for a fact that Tommy's joyous personality is a reflection of God's work.

    I agree that it is word-of-mouth sharing stories that will reduce the horrible statistic of abortions. I tell EVERYONE. The checker at the grocery store, the teller at the bank, half of the staff where I work follows Tommy's blog. They see the everyday family life that Tommy is a contributor to.

    Much love and encouragement to your family! Have a great weekend!

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  5. I'm so happy you are getting a play group started. I've only been to 2 here in Washington but I LOVE it. It is so nice to be able to talk to the other moms knowing that they at least have a clue what you are talking about!!! Thanks for sharing the stories about the adults with Ds you heard. Very cool, especially the one living on her own, going to college, getting married. Isn't that what every mom wants for her daughter???

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  6. Your group sounds so wonderful. It really is so helpful to connect with moms who share your experience.
    I got so excited reading about the stories of the 20 year olds and I certainly hope that the story of the 42 year old is a relic of the past.

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  7. I never had playdates with Zach - we moved around so much back then and I never knew alot of people like us and I didn't know how to get involved. Times have really changed in just the last 10 years!
    Anyway, I hope you have a good experience with the get-together's/playdates...
    I would have loved them!
    Braska is to die for cute!!!!!!!!
    I just want to squeeze her to tight and tell her how beautiful she is!

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  8. Tommy's mommy--Tommy is a joyful example to so many! I'm sure it's not hard to brag on him to everyone. :o)

    Kacey--It was encouraging, and yes, that's what I want for her...IF that's what she wants, of course.

    Lisa--I feel horribly for all the parents who had to endure such ridiculous chastising back in the day, and my hope is that we don't return to that...sometimes I wonder, though. We just have to keep spreading the good stuff.

    Nancy--I'm sure it would be hard if we were moving as much as we did when I was young too. But I'm thankful that for now we have this group. I'm hopeful the playgroup will go well.

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