Welcome to DownSyndrome.com
Why Create a Social Network?
* The Down Syndrome Social Network
* Overview
* Why Create a Social Network?
We’re looking for contributors! If you have something to say on the site and you want to share your experiences an or thoughts, you can either create a blog or submit an article to the main website which will be readable by the tens of thousands of readers on the site every month.
We’re seeking our friends and family who are passionate, loving and caring about making developing a community for and about individuals with Down Syndrome and their loved ones.
Come join us. The goal with this site is to be the preeminent social community, up-to-date research and resource to help fund local groups with their much needed activities.
Please tell your friends to join the network and create a blog!
The result of bringing your friends and family will be the ability to help fund your communty activities as well as promote awareness among our community as well as society at lorge.
From the DownSyndrome Blog
The Down Syndrome blog will have two objectives:
1) communicate to the thousands of people visiting the site every day
2) to communicate my personal experiences with the world in an attempt to humanize the experience of love my son with Down Syndrome. I couldn’t be more excited. Pictures to come.
More on the DownSyndrome Blog…
There are hundreds of ways to use DownSyndrome.com You could create a social network to:
Interact with your friends, families, support groups, etc.
Promote upcoming events, share recent stories, collect donations, put advertising on your site to try to monetize your traffic and make money for your support organization; and most importantly, hear what your friends and constituents are saying. This is the most fun!
Raise awareness for Down Syndrome-related issues – – Signup Here
Get the word out on important issues and causes and inspire others to take action
Exchange parenting tips
Let everyone benefit from your experience and swap stories with your friends all over the World.
Connect with people in similar situations from every corner of the World.
Start the meet-and-greet before you even arrive, and share photos and videos when you get home – Sign-up Here
Make your “wedsite and/or blog” – Share your experiences with the World. Help your friends and family with Down Syndrome get online also.
Make connections and receive direction from seasoned pros.
Elicit donations for your groups. Link to DownSyndrome.com and we will help you with all your fundraising activities.
Meet your neighbors
Inspire & educate
Learn new techniques and mentor new and expecting parents.
Share insights & find support
I find this website very helpfull and it helps me understand my litle brothers conditions alot better..and im making him a myspace page and hes very excited about it=)))
It’s nice to see there is a place where parents, friends & family can go to share their experiences & most importantly their joy of raising a child with downs. I was blessed with my grandaughter Taela on 8/27/05 and she has added so much joy to my life. To be able to look at life through her eyes has helped me to remember “don’t sweat the small stuff”
My grandson is 3 years old and was born with ds. He is a love and a joy to us. He has a sister 2years old and a brother 9months old. He follows his sister a lot and does everything she does, he is even copying her with some words although he uses sign language alot and gets his point across very easily. He was born very healthy and we are very thankful for that. I only have one question now, he stil does not have any teeth, the only ones he has is all 4 back molars is this normal? Do children with ds get teeth at a later age? I would appreciate any answers from parents or grandparents who know this question. Thank you.
hi i just found out through my blood test that i am of high risk to be having a baby with ds a friend mentioned typically you are larger in this pregnancy than others (which i am) did any of you find this to be true?
many thanks
rebecca
This is not true. I wish you the best with your pregnancy. If you have any other questions, please come back and we’ll figure them out.
Thanks,
Justin
Hello everyone! My name is Cody and I’m a Senior psychology major this year at Hanover College. My Senior Project partner and I are conducting research on Down Syndrome and parents of children with Down Syndrome. We would greatly appreciate your participation. The survey should take no longer than 20 minutes and your responses would help us immensely. Research is also being gathered on parents of chlidren with Fragile-X and Autism, so if you know parents with children with these other diagnoses, please lead them to the survey as well. Only parents are asked to fill out the survey.
The survey can be found at the following link: http://psych.hanover.edu/research/SeniorProjects/2009/coskunpinardavis
Again, my partner and I very much appreciate your participation and your willingness to contribute to research on Down Syndrome.
Cody
These children are by far the most rewarding to have. If anyone tells you different they are liing. Yes they take alot of work,but to watch them overcome the dissability Is absolutely awesome!!!!!!!!!
I have to agree with MIchael. these children are a blessing. My son is now 4 and yes it takes alot of work to show him how to do something but when they get it and you see the excitement on there face boy it is so hard to discribe. LIke I said he is a blessing.
Hello.
I am Brazilian, music student, and I am researching about the importance of music exerts in children with down syndrome. I created a blog to debate on this and other subjects relate to down syndrome. I’ll be very grateful if you could make a visit and divulged it!
Thanks!
http://sindromededownsp.blogspot.com
I am so happy you made it to the site. DSC members, I think this would be a great conversation to have…
Hello friends! I work for a non-profit organization, and – as a side project – I am assisting one of our major donors who has a passion for Christian ministry to people with Down syndrome. Specifically, this donor is looking for the right organization to invest in. I would love to connect with folks who have knowledge of and/or experiences with organizations helping children or adults with Down syndrome.
The investment interest, I believe, is more geared toward community and assistance moreso than medical research. And also more geared toward Christian organizations, though I think that an impressive enough organization without explicitly Christian ties could interest as well.
Any insights or recommendations would be greatly appreciated!
Thanks much,
Allen Thornburgh
allen_thornburgh@pfm.org
I’m glad there is somewhere I can log on to and speak to other parents and grandparents about our beautiful children! I hope I can get some good advice and give it as well. Thanks for being there!
I hope that I will be able to help someone or if I need help that there will be someone there for me. My kids are the joys of our family. We are trying to learn sign language for Ian,who shows absolutely no interst in learning to sign at all. He loves music, but shows some signs of having a hearing problem. Anyone that can help or knows anything that can help I will be grateful.
hi , i am doing a project on Down syndrome at school and ur website was very helpful ,thanks.
How did your project go?
Have you tried the groups? I am also interested in this issue. Anyone?
Btw, how are things going? its been a little while and I would love to hear how things are progressing for Ian.
Justin
How are things going? This site has quite a few more people now so it would be great if you dropped back and started some of those meaningful conversations up again.
Justin
Let’s reconnect. Maybe I can help your initiatives by getting some eyeballs to your site. Just a thought…Please message me.
Justin
Best Day Foundation is hosting two beach events for kids with special needs in Ventura on October 3rd and 4th! The free, safe, fun-filled days include activities such as surfing, kayaking, bodyboarding and more. Please visit our website to learn more about the events and let those in your network know to sign their kids up to participate!
http://www.bestdayfoundation.org/best-day-ventura/
Hope to see you at the beach!
Sincerely,
Max
–
Max Montgomery
Co-Founder
Best Day Foundation
http://www.bestdayfoundation.org
Our son name Matthew also has DS, He is now 3 years old and he is very strong boy and loving. Matthew always is giving hugs and kisses. But he wants to be outside alot and he like to work on things put them together and taking apart. He likes to play ball with his sister Sara. He loves everyone.
Amy
Im doing a project and I need a personal report to help me…please email me.bulldogs64_rangel@yahoo.com
Hi, was wonderig why registration is disabled. Finally find the site we were looking for and can”t sign up for last 4 days. Thanks soulflytribal@hotmail.com
Anyone interested in helping … see the email above.
Dan,
Sorry for the inconvenience but the blog spam is crushing my soul…I needed a break for a little while. I’ll try to turn it on again and see what happens but until I figure out a better solution, its going to be intermittent.
Justin
Thank you kindly. Looking forward to signing up.
Hi there,
I’m still having trouble signing up and really need to talk to others about H1N1. I have a really important question. We have a 7 month old son who has DS and had a full AVSD repair 2 months ago. He has recovered beautifully and was home day 4 after operation. We are really nervous about the H1N1 and him contracting the virus as he would be considered high risk. I need to know from other parents in the same situation if they had their child vaccinated or not. Is it safe? Kinda darned if you do darned if you don’t. We have asked his cardiologist and he basically left it up to us. Neither saying here nor there. We don’t know what we should do and are kinda nervous. Any feedback would be extremely appreciated. Thank you very much. Dan soulflytribal@hotmail.com
My wife and I have legally adopted a Down Syndrome individual (her nephew on her brother’s side) since when he was under 18 years old. He went through a very difficult childhood after his father died and his mother was deprived legally of her parental custody as she is a schyzophrenic and ill treated her son after her husband’s death.
That’s why we are very interested in exchanging circumstances and views.
well i am doing research in my sci research class on ds . a girl made a comment saying that if her child had ds, she would give them up becaus she couldnt do it(meaning take care of the child). What i want to know ids how did anyone feel when taking care of their child
thanks mo
Dear Moms/parents….
Iam the mother of baby MARIAM,born just 2 weeks ago.she born with down syndrome.I love my daughter like anyother mom n this site,she is so perfact n she is my lill angel.Iam very much worried for her health as she is having heart prob also,I wish if i can talk to other moms with DS babies n share there expirences as well???I hav 2 son n 1 daughter,my other kids r just fi9,so this time it was a shock,still going through a bad fase,confusion,frestration,sadness,but it dosent means i din accept my lill angel NO i think as a mother this is a initiall shock time period iam going through n hoping with the grace of god n with the suport of other like u,I will cum out of it.
I found this site n wanted to be a member,so i can also share n talk with all of u,n at the same time can learn from u all… but saying registration disable??i dont knw how to singup if any1 can help????plzz.my email is Muskan4u2@hotmail.com if any1 wants to write personaly ur welcome plz….
Thankz
safia…
I had few problems raising my DS daughter except for dealing with rude people who would give her a hard time, such as ignoring her, or laughing at her. My personal biggest difficulty was seeing her hurt when she was excluded from peer groups.
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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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