Featured Blogs – Tri 21
Submitted by Justin on Sunday, 25 January 20098 Comments
Anybody out there?
January 22nd, 2009
Hey is anybody out there reading this stuff? Please let me know! Anyway, I took my daughter to the endocrinologist for a routine check up today and everything looks pretty good. Is it just me or does it feel like a full time job to just take care of all these appointments? We see the endocrinologist every 3 months, the ENT every 3 months, the eye doctor every 6 months, the cardiologist, the orthotist, we have CPSE meetings, etc etc. My poor daughter sees more specialists than an 90 year old woman!

Yes. Im doing a project on Down Syndrome and i found this site and saw where it said if anyone has been reading this. && yeah
Yes, I’m new to this site, and wanted to read as much as I can. I know, I know, I’m just starting to realize my son’s doctor’s appointment book is getting thicker..haha
I’m new to the site. Yes! Yes! I’ve always felt that way. It seems that my daughter has so many “special” needs. It’s not even just the appts. It’s all the other stuff too. There just isn’t enough time in the day to do it all. I decided a long time ago to take my calendar and decide how many out of the house appts. I could handle each week. For me it was 3. Once my weekly allotment was full, I didn’t make any more obligations for that week. It saved my sanity. Did I forget to mention that I have 5(!) kids. Good luck!
my daughter is 8, and the appointments seem to have let up somewhat. though, we all know in life when one thing is taken away another thing is awaiting to take its place.
Totally understand…Parents of kids with special needs are on the run .. exhausting.
Justin
How are things progressing? The site has really grown and I’m sure folks would love to hear your experiences.
Justin
First time I’ve been to this website. I’m new at being online. My daughter, Holly is 20 years old. Reading different stories gave me teary eyes and a lump in my throat. The “early years” seem so far away, but yes it was all consuming. We didn’t have a lot of medical issues and school went well because of awesome teachers. We always stessed the academics so Holly would have basic reading skills. She graduated in 2008. She’s involved in local theatre and has her brown belt in Karate. In high school she was in the chorus and ROTC. She swims. She bowls. She loves life and is very popular.
For me, Holly turning l8 and becoming an “adult” was a huge milestone. Not to mention my MENOPAUSE.
Hi Betsy…Thanks so much for sharing Holly’s story. you can’t imagine how much hope and appreciation comes from simple comments like yours. I hope you’ll join the site and help others that have questions and/or concerns.
Sincerely,
Justin
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Articles »
That which we do today will echo throughout the generations to come
One of our wonderful visitors wrote in asking for activities to do with a group of people to help them get an understanding of what it might be like to have Down syndrome. The activities included are great for parents to present to their child’s class, a teacher to present to their class, or even a student to present to their class as a project. We appreciate this educator’s commitment to making the world a better and more accommodating. Thank you for everything that you do.
Blogs »
Featured Blogs – The Ordinary Life of an Extraordinary Girl
I finally did it — I hid the gross, disgusting, ugly ,worn-out, fake crocs that Alex has been wearing every day for 2 1/2 years. It took a lot of guts – but I am proud of myself (at least for now).
When my kids were little, I thought it was sort of cute if they wanted to wear the same pair of jeans or shirt for more than two days in a row. However, Alex is 16 and these dreadful blue shoes have got to go. She should not have even worn them for two weeks in a row.
Many people I know with down syndrome have flat, wide feet. I am not sure exactly why that is – but as a result Alex has a funny step and walks with her feet pointed outwards. As with everything in her life, Alex has learned to compensate, and walking or even running – as evidenced by the fact we are going to participate in track and field at the National Olympic Games – is not a problem for her…
Books and Videos »
My Son Teddy
Hello everyone..I wanted to post a video of my son Teddy. It has a song that I love that makes me tear up every time. I wanted to kick this multimedia experience off by posting something of my own. I absolutely encourage you all to post your own pictures and videos. As the site grows it will become easier. Please enjoy ..
Education »
That which we do today will echo throughout the generations to come
One of our wonderful visitors wrote in asking for activities to do with a group of people to help them get an understanding of what it might be like to have Down syndrome. The activities included are great for parents to present to their child’s class, a teacher to present to their class, or even a student to present to their class as a project. We appreciate this educator’s commitment to making the world a better and more accommodating. Thank you for everything that you do.
Support Groups »
Long Island Buddy Walk – Alexander’s Angels – Down Syndrome Research and Treatment Foundation
Let’s welcome the latest addition to the DownSyndrome.com team, Laura Suer. Laura has accepted a position as a participating volunteer and editorial staff member who will focus on partner outreach and strategy. She has been active on the site since its inception blogging at the URL tri21.downsyndrome.com. One of Laura’s first coups (I’m sure one of many) is to establish a relationship with Alexander’s Angels who runs the Long Island Buddy Walk and has a great future of providing much needed services to the constituents of Long Island.
Thank you Laura for bridging the relationship with such a wonderful organization. If you live in the Long Island area or if you have the inclination to help their wonderful support group, please consider providing assistance in the form of either volunteerism or financial support. Additionally, the Down Syndrome Research and Treatment Fund has an online store that further supports important DS research that hopefully will benefit all of our loved ones in the future. Support for DSRTF can be in the form of purchasing items from the Down Syndrome Store.
What is Down Syndrome? »
What is Down Syndrome?
Down syndrome is a genetic disorder that delays in physical and intellectual development. The condition varies in severity, so developmental problems may range from mild to serious.
Down syndrome is the most common genetic cause of severe learning disabilities in children, occurring in one in every 800 infants. Every year, as many as 6,000 babies are born with Down syndrome in the United States. The condition is named after John Langdon Down, the doctor who first identified the syndrome.
There’s no medical cure for this condition. But increased understanding of Down syndrome and early interventions make a big difference in the lives of both children and adults with Down syndrome.
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