When I gave birth to my son Sam in 2012, at first I didn’t know where to turn. I didn’t really know anyone familiar with Down syndrome who could be a support, and I certainly didn’t know much of anything about Down syndrome myself! So, like any frantic new mother, I Googled.
Googling is a dangerous prospect, full of nasty, scary holes one can fall into. But sometimes, it also leads to soft places to fall. In my case, it led to me finding a local support organization, Down Syndrome Connection of the Bay Area. It also led (through a series of twists and turns) to me finding my Rockin’ Mom group, and what would ultimately become Down Syndrome Diagnosis Network.
Now I’m in an enviable position—I have support from two sides! Locally, I have Down Syndrome Connection. Sam attends classes and events there, and we take advantage of many of the wonderful programs they offer. I’ve even begun working for them, doing medical outreach, because I so strongly believe in the services they offer and want to help connect new local parents with them.
Online, I have Down Syndrome Diagnosis Network. They have been a godsend in terms of constant support. While my local organization is open during business hours and is great for in-person support and services, my Rockin’ Mom group through DSDN is available 24 hours a day, seven days a week. Any time I have a DS-related question or comment or I just really need to connect with someone who gets it, I can hop on my Rockin’ Mom group and chat. And DSDN’s annual Rockin’ Mom Retreat has become the highlight of my year—three days to connect, recharge, and be inspired. It’s perfection, all wrapped up in a nice little weekend.
I joined the Board of DSDN last year because, as I do with my local organization, I believe very strongly in their mission and the supports they provide to families of babies and young children with Down syndrome. And somewhere along the way, I realized I have the perfect yin and yang of support. Between my online piece and my local, in-person piece, Sam and I have a perfect little cocoon.
I want other parents to have a similar cocoon, and I’m happy to say that my local organization, Down Syndrome Connection of the Bay Area, shares DSDN’s materials in their welcome bags to new families. I think collaboration is so important when you’re working to provide support for new families, and I love that two of my favorite organizations can work together so seamlessly. They go together like peanut butter and jelly. Or maybe peanut butter and chocolate, which I like even better.
I’d love to see more local organizations partner with DSDN in a similar manner. I think it’s a perfect natural collaboration. At current time, DSDN has more than 80 local partnerships to provide materials and resources to organizations across the country. If you’d like to see your local organization make the same connection, you or they can request DSDN brochures and leaflets. DSDN is happy to send you or your local org their materials to distribute to your local OB-GYN, pediatrician, DDD provider, or therapist’s office. Just go here to request them: https://docs.google.com/…/1dtr_mPOXSMEi9p1dNZGQ_-…/viewform…
And then give yourself a little pat on the back for helping to provide an extra layer of support to new families. Or, go with my preferred method of self-congratulations: Eat a little peanut butter and chocolate. Sam certainly agrees.