Monday, September 9, 2013

Emotional relapse

Wyoming Buddy Walk organizers have a lot to be desired...it was my first walk and i do not get it...i do not get the point...at all...to raise awareness for Down syndrome? if that is the case where was the state newspaper, TV, radio...people other then families with members that were born with Down syndrome...gathering in the park by the University and dancing to music for hours is not what i call a friend-raiser...it is perpetuating a stereo type that people born with Down syndrome are happy and love music and to dance...oh sorry I forgot the games from the 1980's...if this is a walk...then lets walk the capitol and demand change for our state waiver system...or how Down syndrome is referred to by a state senator as a disease...encouraging people first language...during the event people at the microphone keep referring to Down syndrome as special -that is condescending...Maddie is not special...are they referencing that my son Max is not special? because he is just typical...seriously I do not want my daughter to be a perpetual child or special...she already has a HUGE ego...I want her to live a good productive life...you know i-n-d-e-p-e-n-d-e-n-t-l-y...after the dancing and 6 carnival games and lets not for get the big purple gorilla the walk began to the University Football stadium for lunch and a game...that would be great if my child was not 4 years old and has absolutely no interest in sitting in the hot sun and watch football...but i do concede it is great for alumni and older kids and people...

where does the $$$$ go when we raise $$$ for the Wyoming Down syndrome association?? if you are raising money for a cause...then how about touting the details...how you help new parents muddle through there diagnosis to possible services and/or resources that may be available to them...you now the services you did not provide for me...at all...and when questioned about it you said but we hold a buddy walk and we do not provide services to families that deliver in Colorado...or does the money go to research that helps to encourage the abortion of my child...instead of going to the education on how to teach my child...maybe the money could go to lobbying to our local legislators for the Wyoming Waiver system that actually helps families in Wyoming...providing lifesaving services...

the disconnect between the Wyoming Down syndrome association and the actual families is mind blowing...I have wrote the senator that has no people first language skills unless it has to do with millionaires and oil/coal moguls...i have also made my frustration known to the Wyoming Down sydnrome association...

But this is were my frustration boils...why do i care...why does it matter...why do i fight...there is no change that will ever be good enough...unless there is not a need for a Buddy Walk...because society finally sees my child as nothing special and different...my real issue...my daughter was born with Down syndrome and no matter how you spin it or how I have grown with becoming more comfortable with it...I still am very much afraid...and sad....yesterday was a bad day...and hopefully today I will begin to build back up my bubble of bliss and everything will become comfortable again...I cannot explain my fear of the future...staying in the present is truly my coping mechanism that works for me...

10 comments:

  1. 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?

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  2. 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.

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  3. 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/

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  4. 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.

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  5. You should post this publically or in letter to an editor or something. It's easily the strongest post yet

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  6. 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. xoxox

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  7. 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!

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  8. 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!!

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  9. 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 ;)

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  10. 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? :)

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