tag:blogger.com,1999:blog-3825000868976601610.post6607450191922490654..comments2023-10-28T05:24:47.518-07:00Comments on Chromosomally Enhanced: Emotional relapseAnonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-3825000868976601610.post-77684977010918447412013-09-12T18:28:57.092-07:002013-09-12T18:28:57.092-07:00Can I just tell you I have thought some of the sam...Can I just tell you I have thought some of the same thoughts about our local association? While I know some programs are funded and stuff like that is good, I wonder with all this "awareness' that is being raised why is it only the families and their friends that show up for these walks every year? Why am I still fighting for inclusion so hard and feel like with all this awareness I do not see it when I step outside the sheltered walls of our DS community? Also, I wonder why people in the DS community still perpetuate stereotypes I am hoping to breakdown someday...like as you said...calling my kid "special." Both my girls are special, so I completely understand you there. Oh, I probably have said too much here but oh well. I loved your honesty and loved this post. You do what you think is right in your heart about it because I think you are up against a bigger beast than people realize. I know to change some of our association ways would be a big job that I am not ready to tackle at this point in my life right now. I first must fight daily for my daughter at school, her rightful place in this world, and after that I am out of energy. So, maybe someday, together with people like you we can fight these kind of battles later when we have more experience, more energy and our girls can fight with us! How about that? :)Beckyhttps://www.blogger.com/profile/01201595211241091609noreply@blogger.comtag:blogger.com,1999:blog-3825000868976601610.post-78571909444236807912013-09-10T14:50:14.008-07:002013-09-10T14:50:14.008-07:00Our association raises money at the Buddy Walk eve...Our association raises money at the Buddy Walk every year that go to scholarships for the families. It's actually really awesome. We get some news coverage and we have quite a few sponsors. I think you should try to join the board or become a committee member and see what you can do to change things. You seem like a motivated person to me ;)Erinhttps://www.blogger.com/profile/09879135187722664722noreply@blogger.comtag:blogger.com,1999:blog-3825000868976601610.post-64297655483274720572013-09-10T13:04:52.709-07:002013-09-10T13:04:52.709-07:00We have no media coverage of ours, either, and our...We have no media coverage of ours, either, and ours is quite a big event. However, the event is the primary fund raiser for our organization, and they use it to fund a LOT of programs throughout the year - educational programs and events, new parent packets and outreach, self-advocate programs and events, family events, etc. There's a ton of stuff going on that I have definitely benefited from over the last 7 years, which I would love to see continue! I love the suggestion that you join the board - you'd be great!!Beccahttps://www.blogger.com/profile/14963099760885760598noreply@blogger.comtag:blogger.com,1999:blog-3825000868976601610.post-60625815715339488522013-09-10T05:54:38.194-07:002013-09-10T05:54:38.194-07:00I have never been to a Buddy Walk...But sounds lik...I have never been to a Buddy Walk...But sounds like to me if there was no type of media there that kind of defeats the whole purpose of raising awareness. Everyone there is already fully aware of Ds. You made some really good points in here!JChttps://www.blogger.com/profile/16040699928110444013noreply@blogger.comtag:blogger.com,1999:blog-3825000868976601610.post-32452983789505296232013-09-09T21:10:00.699-07:002013-09-09T21:10:00.699-07:00Great post!!!! You are bang on! I was contacted on...Great post!!!! You are bang on! I was contacted once by one of the DS societies here in Calgary. Once....and that was only because I had first "joined" and became a member. I am also very uncomfortable with the "special" "special angel" label that those with T21 tend to be given. Any money raised for the DS society's here goes back to the society. Not sure exactly where the money goes exactly. I can empathize your fears. I too want Stella to be fully 100% independent. I don't want her to be looked at like a little girl when she is an adult. I am sorry today was a bad day for you. I hope tomorrow is better. xoxoxAnnahttps://www.blogger.com/profile/14012733380565584975noreply@blogger.comtag:blogger.com,1999:blog-3825000868976601610.post-37474142389137568572013-09-09T19:51:42.942-07:002013-09-09T19:51:42.942-07:00You should post this publically or in letter to an...You should post this publically or in letter to an editor or something. It's easily the strongest post yetAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3825000868976601610.post-29888354176312027952013-09-09T19:23:02.137-07:002013-09-09T19:23:02.137-07:00My daughter is 28 and last year was our first time...My daughter is 28 and last year was our first time at the Washington State Puget Sound Buddy Walk. I wasn't impressed. It was a large group of people with Down Syndrome, with their families, walking around Seattle. I didn't see any news stations, newspapers, or news media of any kind. I too wondered who we were trying to reach because my family is already aware... I don't think we're going this year. Cindyhttps://www.blogger.com/profile/13760897671143549963noreply@blogger.comtag:blogger.com,1999:blog-3825000868976601610.post-82246337805322768092013-09-09T16:13:21.316-07:002013-09-09T16:13:21.316-07:00A lot of the money goes to Wyoming Down Syndrome A...A lot of the money goes to Wyoming Down Syndrome Association. The fund a family conference and provide care packages to new parents. Here is there website and you can check out all they do. http://wydsa.org/Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3825000868976601610.post-54439114719722672512013-09-09T12:49:45.172-07:002013-09-09T12:49:45.172-07:00Think about joining the board and bringing about c...Think about joining the board and bringing about change from the inside of the organization. Once you're there you can get more insight into the association's financials and you can work with them to make that info more transparent to others. Get a first call program started - a program that puts parents in touch with parents who just received a pre and post natal DS diagnosis. Our group did here in Michigan with the help of the Massachusetts DS organization - an excellent and very helpful group. Help the association bring in the right speakers from a therapy, educational and developmental perspective to help educate at regular meetings. Work to make the Buddy Walk more than it is now - use it as a way to fundraise but also a day of celebration for those with DS. You're fired up about change - and for good reason. Join that association and bring it for your daughter. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3825000868976601610.post-20624596610709897032013-09-09T08:47:22.275-07:002013-09-09T08:47:22.275-07:00You have a valid point. If you are going to have a...You have a valid point. If you are going to have an association, they need to be goal oriented. Throwing a party isn't a very good one. You think that they should be providing education for parents and teachers of Downs Syndrome children. Well that's huge, but you are going to have to have people in that association that are trying to achieve that goal. So who is running that association and how did they get there? And how can you influence them into doing more?Lisa https://www.blogger.com/profile/09324961653370110887noreply@blogger.com