Parents of Children with Down Syndrome Should Know That They Are #NeverAlone

by Cassie Fiano from Victory Girls Blog:
I was alone when I found out Wyatt had Down syndrome. And I mean that literally: I was alone in my house. Less than a week earlier, my husband had deployed to Afghanistan. We knew that our odds of having a baby with Down syndrome were 1 in 6. He left the decision on whether or not to get an amniocentesis and know for sure up to me, and I just couldn’t go the rest of the pregnancy not knowing. I got the amnio two days after I watched him get on a bus to go to war, kissed him goodbye and hoped it wouldn’t be the last time. And three days after that, I got the phone call that would change my life forever, alone in my house, with no one to help me through it. My family and best friends were hundreds of miles away in our hometown. My husband was at war. And my world had just been shaken to its very core.
Luckily, I had one of the good ones — doctors, that is. My maternal-fetal medicine specialist was great. He never pushed abortion on me, he never gave me outdated and negative stereotypes. Instead of giving me the news and leaving me floundering on my own, he offered me resources and told me he would help me get in touch with the local Down syndrome support group. Instead of telling me about all the things that my son wouldn’t be able to do, he talked about how he would be playing soccer in five years, and joked about how squirmy he was during ultrasounds. I appreciated all of that, more than I can possibly say, but it didn’t change the fact that I still cried for literally days on end, and it took me weeks to stop being scared and finally accept the diagnosis.

#NeverAlone

by Mark Leach from Down Syndrome Prenatal Testing - a resource for Infomation seekers:
No parent should be alone when they find out their child has Down syndrome. But, right now, too many are.
In our case, we were told our daughter had Down syndrome about 2 minutes after she was born. She was still on the warming table, and a neonatal nurse shouted over her shoulder as she left the delivery room:

Doctor, check the baby. I think she has Down syndrome.

The OB cleared the room and went over the physical characteristics that caused them to believe Juliet had Down syndrome. My wife’s first question was, “what’s her life expectancy?”
Now, please appreciate that.
For most every parent, the birth of their child is described as the happiest moment of their life. And it certainly was for us. But that lasted for all of 2 minutes and then her mom is wondering if the life she just gave birth to will end in a matter of years.
Once we got to our room at the hospital, a pediatrician visited and talked to us about raising a child with Down syndrome. A geneticist woke us up the following morning to explain that more than likely the extra 21st chromosome that is the cause of Down syndrome came from my wife’s egg–nevermind whether that was relevant or appropriate to share at that time. And, then, upon check out, as I was paying the bill, I was handed a dot-matrix printout that was from some plug-and-chug program that read,

[BABY GIRL] has Down syndrome

It proceeded to list only the associated health conditions.
And. That. Was. It.
That was all the information we received. No pictures of children with Down syndrome living in today’s world. Nothing about social supports, inclusive educational settings, or life experiences of individuals with Down syndrome. Nothing in writing other than that crappy, outdated green-and-white striped, perforated dot-matrix printout.