Sunday, February 19, 2017

On Starting the Journey All Over Again

Stow got an autism spectrum diagnosis.

Part of me feels compelled to type that line over and over and over again because it feels big enough to engulf everything. I mean, how do you go on from learning you have a second child on the spectrum despite all the work you (and he) have been doing?

The other part of me feels a strange sense of relief. Ren and I have suspected autism for awhile, even though Stow is much different than Sky was at this age, and even though he has responded well to various interventions we've tried. Since Stow was a baby, he has done or is doing developmental therapy, occupational therapy, physical therapy, speech therapy, hippotherapy, chiropractic therapy, social group, and behavioral therapy. He's also been on some form or another of a restricted diet to reduce the various side effects some foods seem to cause. Most of these things have helped, and many of his therapists and teachers tell us that he doesn't seem like other kids they've known who were on the autism spectrum.

But, nothing has ever come easy for Stow. He's been delayed on pretty much every milestone and has had to work hard to reach a lot of them. He struggles with hypersensitivity to some things and hyposensitivity to others. He has a hard time reading social situations and can often overreact or ignore. Classmates and friends are leery of him because he doesn't respond in predictable ways. He has daily meltdowns. And when he's nervous or happy or sad or scared, he struggles to process what people say to him and put his thoughts into words, and the breakdown in his language can seem pretty catastrophic to him (and therefore to the rest of us).

He gets everything eventually!
Up until the diagnosis, one of my biggest worries (honestly) was that all of the knowledge we'd gained from parenting Sky and all the resultant interventions we'd pursued with Stow would actually keep him from getting a needed diagnosis. I know that sounds strange. What I mean is that even though Stow ultimately does okay, he still struggles a lot; he goes from being fine to needing a ton of support to being fine and then needing a ton of support again. Our job as his parents is to make sure he's getting what he needs when he needs it. Having an appropriate diagnosis can help with that.

Despite all we've done and despite all the ways Stow has managed to scrap his way to generally being on track developmentally, Ren and I both still felt like we didn't quite have Stow figured out. That's why we followed through with the appointment with the specialist ten days ago. I'm not sure what I was expecting when we went, but I guess I was hoping for a little bit of magic, that maybe the appointment would uncover some kind of heretofore unseen disorder that could be easily treated with some new (to us) and exciting therapy. A girl can hope, right?

The autism diagnosis tells us our instincts are in tact, and I guess there's something comforting in that. But, we are a bit overwhelmed as we now realize how much work we still have to do. Just like with Sky's diagnosis, this one didn't come with a roadmap, so the way forward isn't entirely clear. There is a lot we have to figure out on our own. Just thinking about it can be exhausting. Since we've done it before, I know Ren and I are up for the challenges of this journey. I was just really hoping we wouldn't have to take it!