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Below are the 20 most recent journal entries recorded in downsyndrome's LiveJournal:

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Friday, April 17th, 2009
3:28 pm
Mod Post
Hey guys, LJ finally transferred the moderation over to me, and with that being said, I want to address a few things.

Even without having a DS child/grandchild/etc., it would be FANTASTIC if we could find many new members who are supporters of these loving children/adults. I would like to ask if anyone wants to join me in promoting on a semi-frequent basis so that it becomes well-known that there IS a place for them or their friends.

Please let me know what you think.
Sunday, January 25th, 2009
9:53 pm
Tuesday, January 8th, 2008
1:18 pm
Have any of you SAHM's found any decent sort of way to make money from home that's NOT a scam, that you don't have to fork over a bunch of money to MAKE money? Any ideas, suggestions? If this is considered off topic, please let me know :)
Friday, May 4th, 2007
11:13 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.

Friday, April 6th, 2007
10:43 am
WalkAmerica for sweet babies!
Hi all! I'm a NICU nurse and I'm participating in WalkAmerica to raise money for the March of Dimes. Please check out my page and read my daughter's story. If you would like to contribute to my efforts to raise money for this great organization it would be greatly appreciated! Any amount helps! Please follow the link:


Sunday, January 28th, 2007
3:18 pm
Potty training tips?
I'm having some difficulty potty-training my 4 1/2 year old son. Does anyone have any tips/ideas/resources to point me towards?
Tuesday, October 31st, 2006
6:39 pm
Looking for research participants

My name is Katherine Koenig and I am a graduate student and researcher at Case Western Reserve University in Cleveland, OH.

I am conducting a study with individuals with mild or moderate mental retardation who are 16 and over and are diagnosed with Down Syndrome or Fragile X Syndrome. Individuals who participate will take two tests - a test of general cognitive abilities and a computer-based test of simple tasks measuring things like reaction time. I usually test in two sessions, with each session taking about an hour and a half. Each participant will receive two $10 gift certificates to either Blockbuster Video or Target.

This research has received approval from the Case Western Reserve University Institutional Review Board and the Cuyahoga County Board of Mental Retardation and Developmental Disabilities.

This is my last year in graduate school and I am desperate for participants. I am in the Cleveland area, and I am willing to travel all over Northeast Ohio to test subjects. I can test at an individual's home. If you live in northeast Ohio and know an individual 16 or over who is diagnosed with Down Syndrome, please consider contacting me.

I will also be testing in Chicago on November 10th and 11th. If you live in Chicago and are interested in participating please let me know. My email is kag15_at_case_dot_edu.

Thank you again for your time and consideration. Please feel free to repost this and pass it on to individuals who may be interested. Thanks again.

*Moderator, if you feel this is inappropriate please feel free to remove.*
Thursday, June 29th, 2006
9:21 pm
patent ductus arteriosus
hello everyone. has anyone known or knows of a baby who has had to have surgery for patent ductus arteriosus? my 6 month old brother will be having surgery & i would like some comments, experiences, if anything at all. please feel free to share.
thank you
Wednesday, March 1st, 2006
9:29 pm
Needed: A co moderator and members for a self advocacy mailing list
NEEDED: A Talkative, friendly, chatty outgoing sensitive, caring, person with good people skills who can start and sustain conversations with people with developmental, learning, and cognitive disabilities. Someone who will treat people with disabilites as equals and not condecend to them.
Someone who can find new suatiable members for this mailing list and convince them to join. And someone who will accept a person with a developmental disability as a both an equal AND a leader and will not try to take over.

I will still handle all of the administrative tasks and still assist in direct support, (finding local recources, CIL, etc) but I need someone to help with the conversational portion of running a list such as finding new members, running chat rooms, advertisting this list on other disability lists, etc.

A Description of the list

This is a mailing list for Self Advocates and other adults and with Developmental, Intellectual, Neurological or Learning Disabilities. I am a Self Advocate from Connecticut who created this list because even though there are alot of mailing lists for PARENTS of people like us, there are'nt any mailing lists for Self Advocates and other Mentally or Learning disabled people other than mailing lists created by Autistic People. This list is open to people with Autism, Asperger's Syndrome, Down Syndrome, Cerebral Palsy, Learning Disabilities, Mental Handicaps, Spina Bifida People in Special Olympics NO FIGHTING PLEASE !!!! This list is NOT OPEN to Parents or Professionals, at least for now, because there are lots of lists for them. THIS LIST IF FOR US!! Please tell any people that you know with disabilites about this list.

Saturday, October 22nd, 2005
3:00 am
my daughter
Well I have two girls...Anastasia 4 and Victoria 8 mos. Tori has Downs and she just had open heart surgery in July...I am a young mom, me and my husband are both 24 and we are having a tough time...I am just trying to find other young parents or were young when you had your child...to talk too, and maybe share their words of wisdom...I thank you all for your time...
Thursday, September 15th, 2005
1:09 pm
Happy Birthday Jamie!
I joined this community a while ago, but never got around to introducing myself. It's probably easier to just look at my user info to find out about me.

My youngest son, Jamie, has Down Syndrome. He lives with his mom; I generally get to see him every other weekend. My 2 older kids are 22 and 23, so they're off on their own, but when we all get together, we have a lot of fun!

Jamie turns 15 today! I have trouble grasping the fact that he's that old. I still think of him as being much younger, especially because of his lack of verbal skills.

It just occurred to me that I don't have many pictures of him uploaded anywhere. Here's the second-most recent one, from when he came to work with me one day last June:

I'm almost finished editing some pix to upload to my LJ scrapbook, so there will be more to follow ...finally!!!

We'll be having his usual Bowling Party for his b'day on Saturday. I'm still not quite sure what to get him for his birthday. He loves looking at pictures, and his mom occasionally gets him a disposable camera so he can take his own. Jamie usually takes one or two good shots out of 12. So I'd like to get him a cheap ($40 or less) digital camera. I tried bidding for one on ebay last night, but was outbid sometime this morning. I can't access ebay at work.

Maybe I'll check out Best Buy tonight and see what they've got. Unless any of you out there have a digicam they're willing to part with ...???
Wednesday, September 14th, 2005
4:05 am
Are there ANY OTHER ADULTS WITH Down's Syndrome or any other developmental disabilities on this list?
Tuesday, September 13th, 2005
12:38 am
Are there any people WITH Down's Syndrome on this list?
Are there ANY adults with Down's Syndrome or any other developmental disabilities on this list other than people on the autism spectrum?
Friday, July 29th, 2005
11:59 pm
i am looking to find someone to talk to about translocation ... i am a carrier and i am having trouble explaining to my doctor that it is indeed possible to "carry" downs syndrome..... and my mothers records that would prove it were lost....
thank you for your help
Monday, July 18th, 2005
10:40 pm
hi, im new here.
im seventeen and have an older sister with downs. she is twenty seven. she is recently comming off anti-depressant medication which she took for over a year. going through depression with natalie was very difficult for the entire family. she refused to eat, had constant insomnia, incredible tantrums and we had to teach her to use the toilet all over again. the change in her was intense. she is a very bright young lady. she has a wicked sense of humor that catches all of us off guard. she is sociable and very smart. she can read and write fairly decently and loves to draw. her artwork is magnificant. she currently holds a government sponsered job and attends a workshop during the week with other mentally disabled adults. she's slowly coming around again. she is back to taking care of herself and definately has her appetite back (she loves to eat). although i love my sister immensely, there have been a lot of ups and downs. i hope to learn from other's experiences and share my own.

Friday, July 15th, 2005
2:49 pm
I can't believe I forgot to post this... This was 7-12-05

Dominic has managed to roll himself over now!! And just to prove it wasn't a fluke I had him do it again before I told Ed. I had him on his belly on his super cool gym mat for his daily work out. He wasn't on his belly for more than about a minute before he rolled on his back.

We managed to capture the moment


And just to prove that he really did mean to do that... 5 times... I made a video of another great roll over!! Yay for Dominic!!  The cool thing about this is that he's only 1 month and 2 days old!!



Cross posted to clubmommy

Friday, June 24th, 2005
10:39 pm
Tiny Dancer
My 7-year-old daughter had her first dance recital last weekend. I have to say, first, how very proud I am of her! She did a great job. She remembered the routine perfectly for the performance, and smiled the whole time, clearly having a ball.

She's much smaller than her peers: literally half the size of some of them! She's in a class with slightly younger girls, but it's still hard for her to keep up. But she works very hard at it.

During the dress rehearsal, Girly-Girl came in too early for one of her entrances. As soon as the routine was over, the Leader of the group (not the teacher, but the alpha dancer, probably 5 or 6) walked over and started scolding my Girly-Girl for messing it up. But she had forgotten the 50 or so mothers in the audience--who immediately began to roar with laughter. I felt sorry for her. She took it so seriously! As soon as she heard the laughter, she looked out at the audience, stricken, and immediately stopped. I caught her in the dressing room to tell her I admire her commitment to excellence.

But when they danced for the actual show, my daughter never missed a beat. Other girls did: one fell, another pair forgot the routine and stood front-and-center watching the other dancers to try to remember it). But my Girly-Girl danced like she owned the stage. And her smile says more than any words I could find about how she felt about it.

photo_behind_the_cutCollapse )

Current Mood: Proud
Wednesday, June 22nd, 2005
9:19 am
I have a question for everyone. My daughter has a tendency to wear a lot of clothes (coats, gloves, long pants, socks and tennis shoes, etc.) every chance she gets, even when it's summertime and she ends up sweating because of it. She has done this all her life. She also likes to wear her backpack a lot, even if she's just going out into the back yard. Once warm weather sets in, we have to hide all her coats, gloves, and other things, or she would be wearing them constantly.

It may be because she's mildly autistic besides being Down's. We have a theory that it has something to do with feeling protected, but we're not sure.

Anybody else have this happen?
Monday, June 20th, 2005
9:29 pm
Pink and purple princesses
I just had the inspired thought to see if anyone else around was interested in Down syndrome. I found you all. Gee. Who woulda thunk? So, I'm crossposting my most recent entry from my personal journal....

I felt strangely energetic after getting off work tonight. Energetic enough to venture out to Target in the company of the girl with something extra (chromosomally). She actually is much easier to shop with now. BUT. She located the princess section in the girls department. I didn't even know there was such a section. Furry tiaras, boas, princess mirrors that light up and talk, princess pillows, princess duffle bags, all sorts of princess doodads...oh yes. Princess skirts and tops. She didn't even ask to buy everything. She settled for a tiara. However, she had to model things in front of the mirror. Standing around, waiting for her, I realized my surge of afterwork energy was a sham. Ah well. You live, you learn....

And now the princess sleeps. She is fooling me, wrapping her true self in the guise of an obedient, cheerful child. She is sly, this Downy wonder. Much more savvy than those unfamiliar with trisomy 21 culture would ever suspect. But I know. Yes, I do....I'll be watching.....

Current Mood: curious
Monday, June 13th, 2005
9:49 am
As with trinapink below, I originally posted this in my personal journal, but wanted to cross-post it here.

My youngest daughter not only is Down's, but is also mildly autistic. She's 21, but is at about a 4 year old mental level.

She had her high school graduation ceremony a couple of weeks ago, and, as reserved as she is around large numbers of people, and considering that we had to do a HUGE amount of coaxing just to get her in the auditorium and to her seat, we were sure that she wouldn't be walking across the stage with everyone else, even with my wife holding her hand to take her across. During the rehersal earlier in the day, the principal was very kind and said that if she wouldn't walk across the stage, he would be glad to walk the diploma over to where she was sitting.

But when the time came, it was one of those surreal moments when everything just seems to fall into place. My daughter stood up, took hold of my wife's hand, and, without hesitating, walked across the stage to receive her diploma as if it was something that she did every day. I was totally stunned. My wife said that after they got past the stage, my daughter kept repeating "Did it! Did it!" to herself. I don't think there was a dry eye in the house, yours truly especially. I know all of you understand the complete amazement and joy that comes from seeing them do something that you thought was beyond them.

I spent the rest of the weekend working on the play set I'm building for her in our back yard, and had it pretty much finished by the Sunday after, so that she could swing and slide to her heart's content.
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