I have spent my afternoon trying to infiltrate the Down syndrome community. There is no secret password, no special knock. It’s not a closed community, nor is it unfriendly or unwelcoming. But it is foreign to me. The vocabulary is new, the discussions, different. It’s full of love, laughter, frustration, hope, and it is somewhere that I now belong. I’m just not sure how.
We have previously been contacted by Ann, one of the family support coordinators from NADS (National Association of Down Syndrome… go ahead, chuckle at the acronym. We always do!). She has called me a few times and each time, I told her I was still processing and not sure what to talk to her about or what we would need as a family. A few days ago, I had decided that I was ready, that it was time to reach out to other people who are navigating through this experience as we are. So I put “email Ann” on my list of things to do… at the bottom… and then I never got around to it. Putting it off? Still not sure what to say? Just very busy? I’m not sure.
Today, out of the blue, she called me! Thank you, God! She sent me lots of information about parent groups and other activities to consider. We have lots of support from family and friends… but sometimes it can feel like I’m on an island, trying to navigate the challenges of Tessa’s world! The ball is in our court now.
Sometimes, I feel a little “late to the party” when it comes to Down syndrome, or maybe just like an outsider still. I have been looking through and following blogs started by families with little boys and girls like Tessa… families who are farther on their journey than we are, or who had a prenatal diagnosis and “know more” before their babies are born than we know two months into Tessa’s life. I have shied away from online communities because of the drama and weird “trolls”, but I’ve found a home reading the stories of those few that I have encountered in the blogging world. And soon, we will venture out to a Bowl-A-Thon or a conference or a playgroup and I’ll start to feel more like I am a part of our new community. Soon.
Yo soy La Lay 
[…] exactly a month ago, I wrote about how I was trying to find my place in the Down syndrome community. I’m still working on that. Last night, I made some progress. […]