I promised an explanation on why I haven’t really been on the internet, so here it is.
My son, Ari, was diagnosed with severe autism back in November. I went through a pretty dark time for a while starting even before the diagnosis because I knew something was “wrong” with him. I kept telling myself and family that asked questions that he was just a late talker and I hadn’t socialized him well, so that would explain some of his behaviors. Denial is a weird thing. But in the late summer, other behaviors started that couldn’t be ignored, such as running around in circles until he couldn’t breathe anymore, not making eye contact, flapping his hands, etc. Alex and I bought some books on autism and started doing research on our own, and all signs were pointing to a classic case, but not too severe. We found the Riley Center here in Huntsville, and went there for a two part evaluation. They assured us that as parents, we were some of the best they’d seen, and none of this was our fault, but he did have some symptoms that needed to be addressed. After finishing the medical part of the examination, we got the results back. The Center had rated him as severe, which was WAY worse than we expected. I mean, he’s so sweet, and likes people, doesn’t freak out too much with new places, and is so clever! But it turns out he’s just a little different from your classic case of autism, as in he’s overly passive.
Getting news like that just shatters your soul. While you’re telling everyone “We got him in therapy early, so there’s a great chance that he’ll be totally normal before he’s five,” deep down, you’re thinking about the percentage of children that never recover and just regress further and further into their own minds, never to come out and live a full life. You feel like a failure, despite the doctors telling you you aren’t. You can’t stop thinking about all those other children you’ve seen that are past the point of no return, and wonder “will that be my baby one day? Will my handsome little boy act like a shell of a human being when he grows up?” So life is scary right now. It was even scarier when we didn’t know how to pay for the therapy. (FYI, insurance doesn’t cover much, and we were left with $24,000 a year to pay on our own) But now, our families have banded together and I think we’ll pull through that part just fine. It’s nice to have so many people care for one little baby. We are truly, TRULY lucky on that part.
So now, every day, I take Ari to the Riley Center, where he’s undergoing intensive ABA therapy. He also has a speech therapist and occupational therapist that come to our house once a week. Every day life is no longer “easy” (like it ever is with a toddler). Simple tasks, such as eating lunch, giving him juice, and playing with toys, have become training exercises. It’s exhausting. I miss just innocently playing with him, thinking some of his behaviors like spinning in circles were “cute,” and just giving him juice when he wants it, rather than it being a huge power struggle. I feel lost not knowing when we’re pushing too hard, or not enough. If we push harder, will he regress even more because he’s so frustrated? Or if we don’t push hard enough, will he ever progress like he needs to? Not knowing exactly what to do is the worst. But we’re doing our best and hoping we’ve made the right choice with the Center.
So you can see why my crafting has taken a back seat. At the end of the day, I just want to be with Alex and turn my brain off. The only thing I’ve made recently was a cozy for my Garmin. I hope to get back in the seat soon now that craft night will be picking back up and I’m feeling more stable emotionally. I did join a gym which has been WONDERFUL. I previously hated working out, but when you have as mush stress as I do, running on a treadmill until you can’t think straight is delightful! Who knew? Maybe this year I’ll actually loose all that weight that I’ve been telling myself to loose for the last 5 years!
This is the mental state I’m constantly in: Stay optimistic and do the best you can do, and don’t let anyone see your tears. It will all work out in the end, and even if Ari doesn’t recover, he will always be my sweet baby boy.
