We are thrilled you stopped by and we would love for you to join us. DownSyndrome.com is a social network that has been created for anyone that is interested in the sharing, learning, caring, discussing, anything about the condition called down syndrome. 
The goal of this site is to provide an intuitive and stimulating environment to help better understand and interact with parents, family, friends, care givers, educators and individuals. This site has the unique capability of bringing people together from all over the world. Our members come from Pakistan, Russia, India, Canada, the United States, etc.
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 .. 
Looking for any suggestions that may work to save my son.
He is 3 months old currently in ICU. He can not put on weight due to his av canel defect and is at risk for heart surgery due to his nutritional state. We currently have him on 27 cal formula with oil through a feeding tube directly to his intestine. He is batteling a infection from his central line or the vent we are not sure. My team of physicans don’t know what more to try to make him stronger. I met with one dr today that says he needs his heart repaired asap but the risks are to great that we might lose him. I can’t bear the thought of that, Now I am fighting for my son, I have to save him some how but I don’t know where to turn too? PLEASE If anyone can help me I would be forever greatful.
On Aug 12th, a new journey began for our family. Micah Mitchell Ward was born at St.Joseph’s hospital. He joined the other three M &M’s, Macie, Mason, and Merrick. Micah was supposed to be born Sept. 16th, but decided he wanted to get out early and meet his new family. He was delivered by c-section and whisked off to the NICU unit where he would under go test which were normal for preemie babies. A few hours later, I was greeted by a team of medical staff standing at the foot of my bed. The news they brought me was that the journey I had experienced before with my other children, wouldn’t be the the same journey I would be taking with Micah. Shock and fear raced through my every being when they told me that Micah had Down Syndrome. I wasn’t prepared for this journey! I wasn’t strong enough for this journey! Why me for this journey? I’m so scared to make this journey.
Hello all,
I just added the ability for everyone to upload their own photos to their own member pages. Just go to the top navigation bar (above) and move your mouse over “My Account”. You will then see an option called “Album” ..
Once you click on Album, choose “Upload Picture”. Fill in a name and a description and choose “browse” and then click submit.
Thats it!
After you are done tell everyone that you have new pictures by either writing on your “Wire” or by adding an entry to the new “Buddy Pictures” Group.
I cant wait to see all the great photos. I just uploaded one of Teddy. Please enjoy. (See Teddy Here).
DownSyndromePages.com is a comprehensive list of resources that are available to help.
Please visit their website at http://downsyndromepages.com
Donna Sauer and Mom after a cardiac procedure
Go DONNA GO…
Our friend Laura Sauer just posted on her blog that her daughter came through her PDA with flying colors. I know many of you were sending …
A few months ago I received a letter from a woman named Linda who just found out that her sister’s new baby has down syndrome. I receive a few of these letters occasionally from confused people that don’t know where to turn and have more questions than answers. The fact that I run this website makes some people think that in some way I have more answers and understanding than my peer group who also have children and family that have had this shared experience. I do not. The support groups that work in your respective communities are infinitely more qualified than I to answer your questions about the condition and how to best provide advice and services to help your child achieve all they can be.
What I can speak to is the raw emotion that came over my when I found out that my son would have Down Syndrome. This was the day that we all have shared in the past; the day that we all asked ourselves, “Why me?”.
Below is the exchange between me and Linda (name changed of course).
There are some wonderful new photos that have just been posted on the site. Thank you Jakey, Braiden, and Rosa for adding some light in our lives by sharing your wonderful pictures. To see more of these beautiful kiddos, click HERE
If you are interested in sharing either pictures or video, please see the instructions on the photos page and I will get them posted.
Technicality
This is a little technicality, but since I was made aware of it, I like to make others aware of it also. I used to say it this way, until a friend of mine made …
The special education advisory council posted the following advice on how to “deal” with your child’s IEP. Their advice is invaluable. More information can be found on their website here.
1. Preparation is a must! If it’s a MET meeting, you need the evaluation to review. Request to meet with the psych beforehand if need be. Don’t try to do the IEP in the same meeting as the MET; it’s too much. Ask to see the goals and a draft beforehand so you aren’t rushed to read through it on the spot.
2. Make a wish list. Don’t go in with too many little things, it will distract everyone and tie up too much time on small points. Go in with your big list of 5. Don’t get sidetracked. Stick to the points.
3. Look ahead. If there is a possible conflicting view on services or placement and you think there will be opposition, do your research. Find studies or research to back your views as well as data on your own child that proves your point. This can include home video, work samples from home or anything you think may convey your viewpoint.
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.
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…
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 ..
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.
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.
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.
I was chatting with a dear friend of mine whose son has Aspersger’s. She was so excited because she FINALLY found a support group that fit her style. We started to compare notes and discovered one thing that turns us off from some parents. I hope readers will not be offended, but we are just [...]
judy lynn rysdam wrote on Savina Pernisco’s wire: 1 hour, 14 minutes ago
NO I had to get a DR. ok for Adrian to wear underwear underneath his pullup. He stay dry for me . He just needs to learn that he can go to a toilet away from home as well as at home. The para and teacher just needs to take him. he soakes through his [...]
Savina Pernisco commented on the blog post Bus Ride 10 hours, 50 minutes ago
georgia, thanks so much for sharing that with me. i am happy to hear from a bus attendant. Too bad all bus attendents our not like you! It seems you really care about the children. they called it a vest and a 5 pt harness and told me she will only [...]
Savina Pernisco wrote on judy lynn rysdam’s wire: 11 hours, 20 minutes ago
so you needed to get a prescription for the school to let him wear the pullups? WoW! is he in special ed class all day or has he been integrated? Lily is in special class all day. it is so hard feeling like you are protecting them fully when they cant [...]
becca wrote on the wire of the group Buddy Pictures: 1 day, 1 hour ago
I'm new here, but I do have one picture uploaded of my baby girl. She is 14months old and as sweet as can be! Her two big sisters are absolutely in love with her!
becca joined the group Buddy Pictures 1 day, 1 hour ago
Harvey and Laura Suer are now friends 1 day, 5 hours ago
Laura Suer wrote a new blog post: Healthy Activism or is the family CONSUMED by special needs issues? 1 day, 6 hours ago
I was chatting with a dear friend of mine whose son has Aspersger’s. She was so excited because she FINALLY found a support group that fit her style. We started to compare notes and discovered one thing that turns us off from some parents. I hope readers will not be offended, but we are just [...]
divadownaspie wrote on Justin Jilg’s wire: 1 day, 9 hours ago
Hi Justin,
I stumbled across this website and most importantly saw you were from Arizona. We will be moving to join my husband shortly and I am anxious to here any advise from someone who is from this state I will call home for the next stage of our life. We have 3 kids [...]
divadownaspie joined the group Welcome to DownSyndrome.com 1 day, 10 hours ago
Georgia commented on the blog post Bus Ride 3 days, 12 hours ago
I am a grandparent of a child who has chromosone 21, but I also am a bus attendent, The bus attendent should be able to connect with this child, and keep an eye on her, He should of taken classes on how to work with special needs children, But i’m afraid to say that all [...]
