Resources for New Parents of a Child with Down syndrome
Resources for new parents of a child with Down syndrome are crucial, as I discovered seven years ago while I was expecting my daughter, Moxie.
Having had an amnio, I knew she was coming with Down syndrome. I suppose my background in disability should have made it easier, same goes for my being deaf and having TBI, PTSD… but it didn’t.
I locked myself up everyday in my offices either at work or at home, and spent countless hours scouring the internet in hope of finding information that would point to a life that would not be bad, either for our daughter or for ourselves.
I wanted pictures. I wanted stories that I could connect with. I wanted groups. I wanted mentors. I wanted friends who understood.
Now you are here, and if you are here because you googled “Down syndrome” or “expecting a child with Down syndrome”, I want you to find what you need.
Here are some links that will hopefully prove to be helpful resources for new parents of a child with Down syndrome.
My free e-book –
“4 Years” is a collection of essays from this blog, covering Moxie’s diagnosis, what to say to me (when you hear I have a child with Down syndrome), fear, the choice to suffer, the choice to keep a child, learning to run, speaking, abuse, breastfeeding, “more alike than different”, siblings, learning to have courage and more.
142 pages with lots of photos and artwork by me.
e-book from i-tunes (this is the nicer format but it can only be read using an i-device)
pdf version (can be read anywhere, on any device)
Stories in Book Form:
Expecting the Unexpected: stories from families, broken down by category (free pdf book)
Down syndrome Pregnancy: if parents could say something to themselves when they received the news… (short stories on the website)
Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives: 10th Anniversary Edition
(actual book compilations of stories purchased through Amazon or elsewhere)
The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood
Very Useful Sites:
Down syndrome Blogs – blogs by sub-category
A Day in the Life with Down syndrome – read about a day lived in a life with Down syndrome. A community space, posts from a wide variety of families and individuals.
Please check out this list that I’ve compiled of Facebook Groups related to Down syndrome. If this is overwhelming (and it is!), please try out BabyCenter (- the Down syndrome Pregnancy group and Down syndrome group). It’s anonymous, very supportive, friendly, and you can slowly move into the Facebook world from there.
It’s a good idea to get to know kids and adults with Down syndrome, and connect with community (face to face). If you live in the US, check out your local Down syndrome Association – google it if you need to find out where it is. The Down syndrome Diagnosis Network and International Down Syndrome Coalition also have fantastic live groups and gatherings.
You are not alone. Please contact me if I can help in any way.