The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Saturday, April 18, 2009

Mother Daughter Tea

St. Louis has a big DS organization, the DSAGSL, but it operates in several area support groups that meet throughout the metro area. Ours out here in St. Charles County has been a great source for community and information through the monthly meetings and other events, like the trainings on how to do an IEP, which I've been attending lately since we're just about to that stage. It's nice that the leader of the StC County group, Adrienne, is also a friend, online first and now IRL. And of course, Julie and I are undoubtedly two of the most important members of the group. I'm just sure of it. Right, Julie?!?

Today the girls and I went to a Mother Daughter Tea that was organized by one of the ladies in our local DS group. It was supposed to be a day for just Braska and I, but M ended up working again. (He's working ALOT of overtime. Great for income, not so much for my sanity.) So Kinlee came along too.

Braska wore one of her new spring outfits, thanks to the clearance rack at Children's Place. Granted, it's a 12-18 month size, and she's 29 months, and it's still too big, but I thought she looked just plain sunny and adorable. She even still fits in her sandals from last year, size 2!

It was at a little tea room that was all decked out in Victorian style, or I think that was the intent, anyway. I'm not up on that period particularly, but it was pretty cute.

There were alot of things I thought about while I was there that I wish I could remember to jot down for later pondering. I've been in this world of Down syndrome for almost 2 1/2 years now, and occasionally it surprises me the way I react to certain things. Today there were 9 or 10 little girls with DS there, ages 2 to 7, I think. It was a very small room, pretty much packed with our group of moms and daughters. There wasn't much room to move around, and very few of the little girls had interest in sitting in a chair. Moms were chasing daughters who tried to leave the room. It seemed there was a constant hum of "come back here," "sit still," "don't touch her," and so on. That's to be expected in a group of little girls, to some extent. But I found myself even more critical of the behavior, somewhere in my mind. I'm not saying that's the right reaction, but it was my reaction.

It made me think, and I realized that I actually hold Braska to a higher standard of behavior than I would most other children. Why is it that I want her to be better behaved, more obedient, more polite, and even more well-dressed and properly "styled"? Wow, that's far more difficult to admit than I thought it might be. Why am I so concerned that she always present herself well, keep her tongue in her mouth--no matter what the reason is for it to be showing, even if it's totally "normal" for the situation and very brief--and respond with a smile when spoken to (which she does not do)? Some of the little girls were better behaved than others. Some seemed to adapt to a new place and limited freedom within it pretty well, but most had a very hard time with the whole situation. It was like I was making mental notes of what I would remember to do or not do as Braska grew into these stages that were represented.

The only thing that makes sense is that I am in some way wanting Braska to defy the "norm" for DS. I want her to be the one who surprises everyone with her good behavior. If she has cute hair, matching bows, current clothes, and can sit still when told, maybe people won't sell her short from the first impression. How twisted is that? Or is it just a slightly bent way of trying to protect her?

This is alot of rambling nonsense now that I glance back over it, but I need to kind of think outloud. I did not think negative things about these moms in relation to their daughters. It wasn't that I was thinking, "Gosh, she obviously doesn't work with her on that," or "She really should have better manners." I mean, come on. The girls were young, most under 5. There aren't alot of 2- to 4-year-old girls that would sit quietly and proper-like in a tea room for 90 minutes, regardless of their chromosome count. Maybe my fantasy world has nothing to do with DS, maybe I just don't know how kids are. But I do know that I felt uncomfortable today at several points... and I wish I could really identify why. I hope it's not that I still have SO far to go in dealing with the reality of what this diagnosis means for our futures. I hope it's not that I've been kidding myself in thinking that I'm all resolved and settled with the whole thing. I'll never ever say that I've got it all figured out, but I did think I was farther along than that. I could be wrong. It happens alot, my being wrong.

Above all, I want to do the best for Braska, and for Kinlee, too. I really DO want them to be held to a higher standard, but yet one that is not unreasonable or overly restrictive. I suppose only time will tell. And I'll take these experiences as learning opportunities, that I may find out more about myself and where I need work. There's nothing at all wrong with cute clothes, pretty hair, and good manners, but I don't want to live in the shallow end. I'm definitely a project in process, but I'll get there.

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