Almost two years ago, Matthew was born. After he was diagnosed with Down syndrome in the week following his birth, we received a New Parent packet from the Down Syndrome Association of Greater St. Louis (DSAGSL) while we were still in the hospital. I skimmed through a few pages in the packet. Nothing made sense to me. The only sentences that I understood were, "If you feel overwhelmed and don't want to read about Down syndrome today, don't. You can educate yourself when you're ready. There's time." Great advice! I put the packet away. It wasn't re-opened until after we received a similar packet from a new parent volunteer in my area a few weeks after we were home.
This coming Tuesday, I'm participating in a focus group at the DSAGSL to review the New Parent packet. What needs to be changed? Is there new and helpful information we should add?
What's in the New Parent Information Packet?
- A Baby First... Information about Down Syndrome published by the National Association for Down Syndrome (NADS).
- Nursing Your Baby with Down Syndrome - a 15-page booklet
- Healthcare Guidelines for Individuals with Down Syndrome - for pediatrician
- The Oral-Motor Myths of Down Syndrome by Sara Rosenfeld-Johnson, M.S., CCC/SLP
- Growth Charts for Girls and Boys with Down Syndrome (0-3 years and 2-18 years)
- Early Intervention - 1 page answering What is it? Why do we need it? How do we get it?
- A Promising Future Together: A guide for new and expectant parents. A booklet provided by the National Down Syndrome Society (NDSS). The Promising Future Together video is also available on the NDSS website.
- Telling Friends and Family Your Child Has Down Syndrome - 1 page of guidelines on writing the birth announcement.
- How Do I Talk About Down Syndrome? A Language Guide for Family, Friends, and Others.
- Parent Resource Guide. Compiled by the DSAGSL containing Missouri First Steps (Early Intervention) Office Listings, St. Louis Area Outreach/ Preschool Centers, Missouri Department of Mental Health Regional Centers, Internet Resource Guide.
- about the Down Syndrome Center at Children's Hospital, St. Louis.
- for new parents about the DSAGSL.
- about Down Syndrome published by the National Down Syndrome Congress.
Got any suggestions?
Off the top of my head, a few things I've thought to add are:
- a small grandparent's packet
- ideas of how to explain Down syndrome to siblings, particularly older ones.
- a list of inspirational books like Gifts or Roadmap to Holland.
What did you find helpful in the new parent packet that you received? What did you wish it had? If anyone has more ideas or suggestions they would like to share, please feel free to leave a comment. Thanks!