When my son, Alex, was born with Down syndrome, we quickly connected with the community. We appreciated the connections with families walking similar paths and made friends with the people who get it in a way that even the most understanding friends outside the community cannot.
When Alex was four years old, we brought home a second child with Down syndrome, Ben. Ben came into our home via adoption. We figured we had a pretty good grip on special needs parenting, so another child with Down syndrome was a good fit for our family.
Ben had numerous medical challenges, one adding on to another for years, but all along he had additional developmental and behavioral challenges which didn’t add up to a simple Down syndrome diagnosis. We assumed it was because he didn’t feel good, but even after getting the bulk of the medical concerns managed, we struggled with behavior.
We went for a full developmental evaluation, and after the initial interview, the psychologist suggested an autism evaluation. I brushed off the notion, figuring that he wouldn’t qualify for the diagnosis, but on the long shot that he would, the additional therapy benefits would be helpful. Then, at the evaluation review, we got the official diagnosis of co-occurring autism.
At first, I rationalized the diagnosis, believing she exaggerated the profile to get it, but a few months later our family attended our local Down Syndrome Association picnic, and it was clear to me that Ben was different from all the other attendees with Down syndrome.
Once I accepted the diagnosis I sought out the community. The benefits of a community were life changing with Down syndrome, so I couldn’t wait to find people.
Except, I discovered the community is largely reclusive. There is online support, but as far as parent groups or mom’s nights out, they don’t happen. Today, my hope is to spearhead an effort to get the community together, starting slowly with a local Facebook group. We, as parents, have so much going on, it might take some work, but the value of finding your people makes it worth the effort. Concurrent Down syndrome and autism can be lonely because we just don’t quite fit into either separate community.
If you care for an individual with Down syndrome and ASD, I would love to hear from you! Please connect with me via Facebook (Alethea Jo Mshar) or Twitter, (@leemshar), especially if you have managed to create a local community of people impacted by autism and Down syndrome.
Alethea Mshar is a mother of three children, one typical daughter and two sons who have Down syndrome, one of whom has complex medical needs. She has written What Can I Do To Help, a guide to stepping into the gap when someone you know has a child diagnosed with cancer, which is available on Amazon, and is publishing a memoir titled, Hope Deferred. She can be found on Twitter as lee.mshar, and blogs for HuffPost as Alethea Mshar, as well as her own blog, Ben’s Writing Running Mom on WordPress. She is also on Facebook as Alethea Jo Mshar.
This article was featured in Issue 52 – Celebrating the Voices of Autism