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Below are the 4 most recent journal entries recorded in Advocates for those Living with Down Syndrome's LiveJournal:

Friday, May 4th, 2007
11:10 am
Please help! for my senior thesis thingus

I'm a senior at RPI (Rensselaer Polytechnic Institute) and for my senior thesis I'm researching the effects that technological and societal solutions have on the lives of people with disabilities, focusing on the young adult age range.

Tuesday, January 23rd, 2007
1:12 pm
New Community Invitation
Cross posted everywhere

Hello everyone. My name is Andrea. I am a mother to a Deaf child, sister to someone who has Cerebral Palsy and is a FIERCE disability right activist, and I myself have ADHD. I am also a Student at Antioch University Seattle in a BA completion program with a class assignment that I would love for you to be a part of. My class is centered around how individuals can use their personal stories to create social change.

For my project, I would like to gather stories of experiences of medical care from people in the disabilities community. I plan on creating a booklet or zine of related art, photography, and primarily your stories to then pass on to the University of Washington's department of disability studies ( http://depts.washington.edu/chdd/ ). It is my hope that by offering your experiences, future medical care providers will have a better understanding of their impact when working with future patients.

Because of the often sensitive nature of these stories, anonymous contributions would be more than welcome. I have set up an account for those who would like to add their stories anonymously. Please see the community for more information. Please also let me know if you have any additional ideas for the direction of this project.

This community is part of a six week project. It is my hope that well after the project itself is completed, the community will continue to be a place of support and sharing

Image Description: Banner with text that reads "A story for change. What is your story?" With the image of the disabled parking logo in yellow on black pavement with the word "Change" writen underneath. Beside the symbol is an open book with the text over it that reads "A community project for positive medical care."


For more information, visit our community page.

Monday, November 1st, 2004
11:04 am
Quiet (but Quite Amusing) Halloween
My housemate and I had no plans for Halloween night, but managed to have fun anyway. She actually had homework to do, which was helpful to me, because I was trying to see about a plumbing problem we have at the moment. She finished her homework with her classroom support person, and then I helped her get into her costume. A little make-up later and some fangs later, she looked absolutely frightening -- she loved it. I got into my costume, and we proceeded to have a photo shoot. I took pictures of her, she took pictures of me, and then I set up my tripod so that we could get some pictures of both of us together. I'm really hoping they come out; since her mom's out of town at the moment, we really wanted pictures of her costume to show when her mom gets back. This is the first year that her mom hasn't picked out, approved, or even seen her costume before Halloween, so the prospect of showing her mom the final product was really exciting for her.
I handed out candy to trick-or-treaters while she was doing her homework (she doesn't like distractions... understandable!), and then when she was done with that, she and I took turns handing the candy out. Candy is one of her biggest food obstacles; as she's always telling me, "It's tempting me." But, she was really careful to only eat one candy, and even after the trick-or-treaters stopped coming around, she didn't complain about the idea of giving the rest of the candy away today so that it wouldn't tempt either of us.
Another thing she's been really good about is the fact that we have no running water, for the most part. This is a big thing; when I moved in last year, I was told (and quickly would have found out on my own) that being flexible is one thing she has to work very hard at. She is very set in her schedule, and the slightest change can throw off her entire day. Things seem out of order to her, making her both confused and stressed out. When I got the call about the possible leak, I was 300 miles away from home, and one of her other staff members was covering for me. When it was confirmed that we'd busted a pipe, I told her to turn the main valve off for the night. When I got home the next day, my housemate was a little grumpy because she couldn't water the plants like she wanted to, but was otherwise okay. Last night before she went to bed, I told her I was turning the water on for 15 minutes. That would give me time to wash off her make-up, and for her to use whatever water she needed in order to get ready for bed. She made sure to get everything done quickly so that I could shut the main back off. This morning, she surprised me. I asked her how long she needed the water on to get ready for work, and she told me she was going to take her stuff to the gym with her and take her shower/ use the water there. I thanked her, and she smiled at me and said, "I'm being flexible." I told her I appreciated it, and she just grinned and said, "it's worth it." When I called her mom later this morning and told her how well her daughter was taking this whole thing, she seemed as impressed as I'd been.

Current Mood: impressed
Wednesday, October 27th, 2004
6:58 pm
A Day of Firsts, and Halloween Costume Fun
I'm a 22 year-old live-in caregiver for a 25-year old with Down Syndrome. There are times when she cracks me up. The following is just one of those times in the last week:

My housemate has decided she wants to be Lady Dracula for Halloween. So we went out and got the only kind of fangs I can get her to wear - soft rubber ones that I could trim down to where they'll actually fit her mouth. There are teeth you can get where you use temporary adhesive, but she was afraid they'd never come off. So I trimmed the hell out of the rubber set because her mouth is TINY, got her some fake edible gel... I must say, she looks quite the little demon. The only problem is that she's decided she wants to wear a string of big white plastic pearls with the costume... it looks a bit ridiculous, but hey, whatever.
That day (Saturday) was a day of "firsts" for her. First fangs, first scary costume as a whole, first sushi... *darts eyes* Never feed sushi to an 8 year old. Or a 25 year old who has the mentality of an 8 year old. At first when she took a bite, I was sure she was going to spit it out and yell "yuck!" I got lucky, though, as she was having a "I'm a 25-year old" moment. She swallowed it and immediately asked to be excused so that she could go get lemonade. Her face was priceless. Damn I'm going to miss some aspects of this job in 8 months... I was really proud of her, though. We've talked a lot in the last year about how to act age-appropriate and how to hold on to her age in public, and she handled the situation really well.
Yesterday she said, "You're a great mom." I asked what made her think I'll be a good mom someday, and she said, "Well, you help people, and you love people, and you care about them. You're great." I have to say, I disagree with the idea that I'd be a good mom, but it was a nice compliment.
By the way, does anyone remember the Fairy Tale Theatre videos? You know, the ones that came out as a tv mini-series about 20 years ago, and then got made into VHS videos? They're actually kinda cute... mostly corny and a bit annoying now that I've grown up, but they're kinda cute. I've been inundated with them for the last three weeks, as that's all my housemate's been bringing home. Supposedly she's bringing home one today or tomorrow that she says "fits me." Should I be offended, then, that the title is "The Princess Who Never Laughed"??

Current Mood: amused
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