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Post by violettesmom on Aug 30, 2007 20:43:23 GMT -5
I've been listening to the CD's from the Conference. AMAZING STUFF! There is so much to feel so very good about the life my 9 week old can have!!!
I do have a question, though...the self advocates I'm hearing on the CD - are they "vanilla" T-21 or are they people with mosaic DS?
I listened to the woman who swam the English Channel on my way home from work and she is just AMAZING and INSPIRATIONAL!!! I'll be happy if my typical kids have their act together as well as she does, let alone Miss Violette, lol...
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Post by Emilysmom on Aug 30, 2007 20:58:59 GMT -5
Violettesmom,
YES........so many of the self advocates are truly AMAZING!!! I'm pretty sure that all of them have T-21 Down syndrome. I went to the plenary session where Karen Gaffney spoke, and I was so very excited for her!!! I also went to a session by Katie Basford, and also heard her speak last year at the conference and she's also very inspirational!
Keep listening to that CD. It will keep you busy till Boston!
Susan
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Post by Chris too on Aug 30, 2007 21:08:09 GMT -5
One thing you have to keep reminding yourself about your infant with Ds is that she is first and foremost little Miss Violette, and then that she has a condition that will limit her in ways you cannot really predict in advance. Stevie's just 2, but I still have to keep reminding myself that just like my other 5, I will get to know her along the way as she grows up and not a moment sooner. I want to plan out her path; I want to know what things will trip her up; I want to be able to dream as big as possible for her future, but just like the others, I only know what she can do today, and how far she's come. According to all the reports I've read, mosaicism is no indicator of lesser disability than standard t21. It's like Forest Gump's box of chocolates - you never know what's inside before you taste it - except that it'll be sweet  Chris too |
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Post by Jackie on Aug 31, 2007 7:40:45 GMT -5
Another thing we all have to remember about our self advocates is that many of them are as capable as the people who speak at the conferences, but they have not been "groomed" for the podium .
There were all sorts of amazing stories regarding the self advocates that many of us never got to meet...Jobs, marriages, independent living, travel, talents..........
I have always wanted the NDSC to do more self advocate presentations at plenaries where the self advocate is featured in video form and does just a short speech...because there are just so many success stories out there...and some people just need a little help in communicating.
Jackie
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Post by mollysmomma on Aug 31, 2007 19:56:28 GMT -5
I have to carry a towel to cry into...everytime i go and listen to them speak....karen gaffney....mia peterman.....
they are JUST beautiful!!
(it's ssssssssssssssssssoooooo embarrassing)
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Post by CC on Sept 1, 2007 22:39:56 GMT -5
"many of them are as capable as the people who speak at the conferences, but they have not been "groomed" for the podium ." Hmmm see for me those are the ones I would most want to hear from, more of the general population of ones with DS, KWIM The "Super Stars" are great and not meaning to take away from them BUT I would be most interested in the Norm so called with ones with DS  Just talking bout me here  CC ~ |
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Post by Jackie on Sept 2, 2007 8:23:09 GMT -5
I have asked the NDSC more than once to do more spotlights on more typical people with DS. Not to take anything away from the so called "superstars", but many of their lives have been directed in being in the spotlight.
I would love help Emily tell her story...her travels, her time spent away from home at camps and at ENMU. I would like to share her year working 700 miles away in Houston and her adventures in living with Katie now in Austin. Many people are surprised that she flies alone ( something many of our kids can learn to do ). I would also like to share the ups and downs of her years in inclusion. The reason I would like to do this is because Emily is not mosaic...just a nice young woman with trisomy 21 who has had lots of love and support from her parents and extended family since birth. What she has done in her life...many people with ds can do also.
And for me...I would LOVE to hear stories of others like her out there who are living in apartments, working, marrying and leading normal lives more or less.
While Emily is quiet in a group...she does speak well and I know I could train her to get up and present at conferences...but that is not HER goal and I try to listen to her like I did with my others. She did say after this conference she would like to give a ...talk...LOL...but so far she isn't sure what she would like to talk about ...or in what venue. ;D
And for those of you with younger kids...I think a nice video presentation of a child in ...say middle school...a typical day would be very interesting...and then a glimpse into his social and family life. Something NOT on the order of Educating Peter ...something less extreme.
I know a lot of this spotlighting is for the benefit of new parents ...to give them hope and I understand it does...but for those of us who have been around the block and back...we need realistic.
Jackie
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Post by violettesmom on Sept 2, 2007 12:55:45 GMT -5
Jackie - I think you've hit on the question I'm asking. I have great belief that my typical girl children can do anything they set their minds to, but know that in reality the odds that they will be the next Madonna, the President of the United States or the person who finds the cure for all cancers is pretty unlikely. I'm the sort of person who works best with an understanding of the big picture so I can work through the day to day...if the "superstars" I'm hearing at the conference in reality have a different version of T21 than my child that makes it easier for them to communicate and achieve, it gives me a different perspective...
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Post by Emilysmom on Sept 4, 2007 5:40:10 GMT -5
Just a thought here............I wonder if it would help if lots of parents wrote to the NDSC and voiced the opinion that we really do want to hear from more of the self advocates that have a story, but aren't already "nationally known". Jackie's daughter is just one example of a self advocate who has a story to tell............WE have heard it here, and we've been inspired. Why not at a national conference?? Maybe it's just a matter of letting the NDSC know what we, as parents, are interested in.
Susan
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Post by Chris too on Sept 4, 2007 8:18:28 GMT -5
Another cool option would be to have self advocates do a write-up about themselves. And then maybe they would be willing to participate in a question/answer session. So people could read the write-up ahead of the session and have questions already prepared. It might be a more relaxed atomosphere for them that way and we could "hear" from more of them. I just loved Jackie's "Proud" post, and would like to read more like that.
Chris too
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Post by Jackie on Sept 4, 2007 9:31:51 GMT -5
I do remember one conference some years ago...where they did the presentation by video...just don't remember who it was...but it was nice because it was a bit more down to earth and had goals and situations that seemed move achievable to me...than say ...swimming the English Channel. And while that was definietly an outstanding achievement...most of our kids will never go there.
If any of you sat through the presentation on The Misson Project , there was a young man who presented quite well and was fun to listen to as well. I am sure there are many teens and adults who would LOVE to have some mic time backed up by a video.
Jackie
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Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
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