Still Rowenna

Today we had some evaluations done as part of our journey to figure out what’s going on with Rowenna. There’s been a slow build up of indicators that something might be going on in addition to Down syndrome.

Over the past year, we have seen some majors changes in our girl. For a while we wondered if we might just be seeing one-off situations, or if the stress of me being so physically sick for so long with Afton’s pregnancy was taking a toll on our girl.

But one night I felt moved to do a Google search about Down syndrome and autism. I’m not sure what sparked it, probably just a gut feeling. I read a few articles and a few blog posts from other parents. It was so strange – I felt like I was reading all about Rowenna. The things described, the little quirks, the challenges – they all sounded like Rowenna.

You see, for a while now, I’ve been watching my child veer farther and farther from the typical Down syndrome path. I’ve watched her peers with Ds acquire words and signs, soak up shapes and letters and colors, work puzzles and even begin to read, while Rowenna seemed to sort of retreat into herself. Development ground to a halt, and speech/sign regressed. Sensory-seeking behavior increased, as well as a new inability to handle transitions, new situations, and doctor appointments. The girl we used to pack up and take everywhere is now a girl who cannot handle 10 minutes at the grocery store.

Hubby and I thought that maybe she was just going through a plateau before breaking out a really great new skill, or that she didn’t like going out and about because she didn’t get to control when and where she got to move around. Then we thought maybe she was just delayed a bit more than is typical for Down syndrome. We thought maybe there was a physical cause, but testing has ruled out any obvious explanations.

I’ve been beating myself up, wondering what I’m doing wrong. Why don’t all the suggested activities and supports for Down syndrome work? What am I missing? Why won’t she answer to her name, look where we point, sit and read with us? Where does she go in her mind when she retreats to a corner by herself? Why does she get so stressed, and how can I help her?

Back to that night on Google. Autism. It made so much sense.

We’d been wondering about other possible diagnoses (apraxia, for example), and I’d done some research here and there. Her school team didn’t seem to think anything was a problem (and that is a different story for a different day), and I admit that I let some of my erroneous ideas about autism get in the way of seeing it as a possibility.

I sent a feeler email out to a friend who works with kids with Ds and she agreed that what we’ve been seeing with Rowenna was worth exploring further. We went to our local Down syndrome clinic for a preliminary consultation, and without me bringing it up, the team agreed our girl should be evaluated for autism.  So that’s what we started today, and while we do not have a firm diagnosis yet and will be going in again for further conversation, all things are pointing to that being a reality.

So our sweet girl likely has a little something extra on top of her little something extra. When we first heard the words “Your child has Down syndrome,” we were afraid and sad. But now? With autism? We feel relief. There is a reason she is so different than her peers with Ds. There is a reason the usual strategies aren’t helping her. We can craft a better plan. We can reach her. If we do get the diagnosis, I will post more about what autism looks like with Down syndrome and links to information so you can read a bit more.

She is still the Rowenna she was yesterday, and the Rowenna she was always meant to be. A diagnosis only changes some of the approaches we will take with her – it does not change Rowenna. She is still my sweet girl. She is still gentle and lovable and luminous. A big sister, cat lover, and hummus connoisseur.

There are additional challenges coming down the road, whether we end up with the official diagnosis or not, but where once I would have been terrified, I have the knowledge and confidence that Rowenna will show us the way, just as she always has.

It’s going to be ok. I know because Rowenna reminds me of that every single day.