Some expectant moms wait to reach out to local groups for a variety of reasons. Others reach out right away. Are you thinking about reaching out? Consider these benefits to reaching out locally while you’re pregnant:
- You can find out if your group has a prenatal outreach, new parent support, or first call program.
- You may find a mentor who can help you one on one.
- You may be able to receive free books or other information.
- You will have access to their lending library with books about Down syndrome.
- You may be able to have a discussion with other local parents with a prenatal diagnosis about feelings, delivery plans, and their experiences after delivery at your hospital.
- You may be able to get your extended family members involved in fundraising social events (like Buddy Walks, or dinners), which will give them a feeling of helping while you take baby steps into the community.
- You can learn about local medical services and providers.
- You can learn about local Early Intervention service providers, including which therapists are the best.
- You may meet someone with a baby — someone whose child may be best friends with your child. This may also help you see the immediate future.
- At group social events your typical children can play with kids with Down syndrome.
- Learn about programs and opportunities in your area.
- Find a local family that has faced the medical issue with which your baby has been prenatally diagnosed.
- Become more confident in your ability to successfully parent your child with Down syndrome.
- Make lifelong friends who you will know and trust in 18 years to come up with innovative housing and social activities for your child.
- Have fun! We have lots of fun at social events — it may take your mind off of this pregnancy stress and help you envision a happy future.
Adapted from Missy’s blog post.
Some parents are uncomfortable about attending local group functions when their child is not yet born. Others embrace the chance to meet other parents. Groups vary in the supports they have available for prenatally diagnosed parents, but you can often get the information you need from their website that can be located at these sources:
link NDSS Affiliate Locator
link Down Syndrome Affiliates in Action
A note with all of these is that the organizations have a hard time keeping up with all of the local groups. If you find a bad link on one of these pages, but it is a group near you geographically, put the name that you found on the page into Google and see if you can find a better link.
Our Resources
See Also: Getting More Support chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
Parent quotes
Reflections from other parents about their experiences with local groups and connections with other parents:
From Mark
While our medical professionals were helpful, we found the best information about living a life with Down syndrome by contacting our local group.
From Missy
People in the Down syndrome community are very, very friendly and willing to talk about their experiences!
From Christine
I had a mom tell me that she didn’t want to do anything with the local group, because it was all for the parents and didn’t seem to have enough events for the kids. Yes, a lot of it is for the parents, it’s so you can learn how to best help your child! My recommendation is to join a local group, get involved online and locally. You won’t regret. Your world has just become larger than you ever dreamed.
From Heather
The power of local groups is real, live people to hear you, see you and your family and learn from. Online can never replace the warmth of a welcoming smile.