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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 neurodiverse… 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 Pregnancy

Down syndrome Diagnosis Network

Baby Center (- the Down syndrome Pregnancy group and Down syndrome group)

Parent Blogs

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.

Online Groups

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.

Real Life

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.


General Parenting Tips Apply Too

You have a child with Down syndrome and that means you have… a child. With Down syndrome.

Your child is always a child first, and that means that all of the standard aspects of parenting apply to you, too. You still need to take care of yourself in order to take care of your child. You need to rest. You need to understand sleep, like using the Parent’s Guide to Child’s Sleep. You need to connect with moms of other kids who have Down syndrome, yes, to find the specific supports you need, but you also need to connect with moms of other kids without Down syndrome. Join your local mom group, local mom meet-up, whatever you can.

The parenting books on parenting typically-developing kids still apply (I highly recommend the books on this list, especially Peaceful Parent, Happy Kids). I only caution you to hold on the comparison charts that some of them have (- like the Dr. Sears books that have all the stages of development that are so not relevant to us, but that many of us drive ourselves crazy with following).

You are not alone. Please contact me if I can help in any way.

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