Today Rowenna officially received an autism diagnosis. After watching our girl change over the last year, and a series of evaluations, there was nothing but relief. With that one word on paper now we have access to a wealth of supports to help her better navigate the world.
As we’ve been going along the last few weeks, reading up on autism and reaching out to other families, I’ve thought often of the weeks following Rowenna’s Down syndrome diagnosis. I felt so lost then. I had no idea there was this huge community just waiting with open arms. I had no idea how many families were out there, how many kindred spirits were just waiting for me to wave my little flag and say “I’m here!”
The comfort and connections I have found in this community are too many to name individually. The community has been a lifeline when I just wasn’t sure what I was doing, and it has been a source for a great deal of hope. I have made some of my best friends through the coincidence of an extra chromosome, and I am grateful for every 3am conversation, bag of snacks left on my doorstep, and surprise greeting card in the mail.
There are times when the Down syndrome community drives me right up the darn wall. There are times when our enthusiasm comes across as too glossy, too saccharine. There are times we forget that we aren’t the only ones out there advocating for things, and we frequently waste time and energy duplicating the work of others.
But still, we’re this big, boisterous family. There are nutty aunties, wise elders, black sheep, soul sisters. We have such unique voices and styles, but yet somehow come together; while we rarely speak in unison, we often speak in harmony. Even when we disagree, there’s still this love there that keeps us moving forward. There’s the understanding that we speak from a common place – love for our children with Down syndrome, and a desire to bust the world wide open for them.
There’s also a shared language (EI, CAVC, PT, SPD, IEP, IFSP…) and inside jokes. There’s camaraderie. A knowing. And from all of that, an ease.
So when we started looking into autism, I tapped into this vast network and knew exactly where to go. It was easy. There was no panic, just a lot of strategic question-asking and specific Google searching. I read and asked and put myself out there, all the while knowing I was in a safe place and that I would find the answers I needed. I knew, without a shadow of a doubt, that this autism diagnosis wasn’t going to limit my Down syndrome family, but expand it further.
For that, I am so grateful. For not having to panic or fear, for getting quick answers, for support from people who warmly embrace Rowenna and my entire family, I am grateful.
And while sometimes we squabble like siblings, I am so happy to be connected to this great big Down syndrome family.