“The only other time I’ve ever had anxiety like this was before we got Casey diagnosed. We knew he hadn’t met his milestones, but I wrote it off to too many other things. My insides knew what my brain refused to deal with. It wasn’t until I went to therapy that I figured out the anxiety was my soul screaming at me to see what I wasn’t seeing. That Casey had autism. I just wish I could figure out what THIS anxiety was over…”
I said this to my therapist in DC, to Lance, to my mother and pretty much anyone else I had talked to about my anxiety with. I said those words and didn’t get it. I didn’t get it. I didn’t get it.
I missed something that was so plain to see. My anxiety was the same as it was before. Same feeling, different child..
We think Abby has autism.
When I wrote yesterday about not wanting to write before I knew I was right, this is what it’s been about. With Casey, we told people that we thought he had autism, and in a misguided attempt to give us hope, they told us that we were wrong. That he was fine. “Look! He’s looking at me in the eyes! He’s too affectionate. He’s not autistic.” I wanted to be wrong. But it hurt to not be able to just say how I felt, wrong or right. Those attempts at hope shut down the conversation about how I was feeling. I wish so much now that I had written what was going on through the evaluations and on diagnosis day. Instead, I put on a happy face and went along with it as if everything was okay. That I was okay. And I wasn’t.
And I’m not now. I’m not okay with her having autism. I’m pissed off about it, and at the same time there’s a sadness that seems to have seeped into my bones. I know well that the autistic adult advocates will say how terrible it is that I’m mad about autism, but dammit, tell me what good autism brings a child with Down syndrome? Tell me how to just accept it and be happy that she’s got yet another hurdle to deal with along with Down syndrome, hearing loss, immune system problems and shitty lungs? It doesn’t change who she is and the light she is in our life. It doesn’t change how I feel about her from the day I was still in clear denial to the next day where it hit me like a ton of bricks…
We were standing in the kitchen and I was trying to get Abby to say ‘hi’ to Heidi. “HIIII-DEEE” I said over and over again. A year earlier she had been saying it. And “ball” and “book” and “uP” and once, just once, she even said “mama.” That’s when I saw what my body had been trying to point out in the same way it had 8 years ago. Words that she had been saying she no longer says. She no longer imitates sounds. She’s regressed.
If it were just the regression, we could say it has something to do with her hearing (which doesn’t, in the end, make sense because she actually hears better now than she did a year ago because of the tubes). We have been saying that her sensory issues were because of the Down syndrome. And her social issues? She’s just shy. You know what? This all might well be the case. But added together it paints a pretty clear picture of autism.
As I say this, as I type the words out, I find myself wanting to just get in bed and stay there for a long time. I want to pull the covers over me, as if they are a shield against the reality that I am too damn tired to take right now.
I’m not allowing comments on this post. I’m not exactly sure why. I don’t want to even feel the need to put on a brave face right now and say that it’s going to be all right and I don’t want to have to agree with anyone when they tell me that this isn’t the end of the world. Because right now, in this moment, I’m really really sad. Being sad is not wrong. I’m not going to be sad forever, but for right now, I’m going to let myself fall apart a little. I’ve gotten pretty good at putting myself back together, I know where the pieces go.