I am beginning to despise the word “progress”. I can imagine how that comes across, because certainly progress is the goal of school and therapy and everything we do with Austin. I am thrilled when he meets goals and does new things, and of course, I want him to continue moving forward and believe that he will. Maybe not as quickly as I would prefer, but he will.
My issue with the word “progress” is that single word seems to be the answer for everything. If someone asks me about Austin and catches me at an unguarded moment, more often than not, I will be somewhat emotional. But as soon as I try to express some of the difficulties, the response usually quickly follows, “But he’s making progress, right?” It must be the thing to say because almost everyone does.
So I paste on my smile and nod. “oh yes, he’s making progress”.
Progress, progress, progress.
Never mind that he head butted me in the face yesterday and it hurt so badly my eyes watered. Or that he screamed for 4 hours in the middle of the night. Or that he throws EVERYTHING, food included, until I feel like I’m losing my mind.
The constant exhaustion and difficulty in doing the smallest thing…well, that doesn’t matter.
Because he is making PROGRESS.
When my friend miscarried her baby, I hurt so badly for her and wanted to say the perfect thing to make it better. The thing is, there was not one thing I could say to take that hurt away. I needed to just listen. And maybe here and there say “I am sorry. I am so sorry”.
I’ve said before, we might not have lost Austin physically. But we have lost other things, and we grieve. Every. Single. Day. Everyday I feel some measure of sadness, and anger, and other things that come with the grief cycle.
I’m not one of the autism moms who claims that she wouldn’t change her child’s autism. There’s nothing wrong with that way of thinking, it’s just not how I feel.
To me, autism is the unwelcome intruder who makes my baby scream and hurt himself. Autism locks him away and keeps words from coming to his lips.
In an ideal world, where we had time to just listen to each other, I would explain my hurt. Maybe even cry for our losses. But after that, I would feel stronger and ready to continue on with the day. I would feel hope and optimism return.
I would be ready to say yes it’s hard, yes I’m sad. But you know what?
He’s making progress.