Said the following to a fellow autism Mama earlier today. Thought perhaps she might not be the only one who needed to hear it. “Stay strong, Mama. As positive as we want to be, it’s ok once in a while to say that it’s hard.” #Love
~ Diary’s Facebook Status, Sunday
I talk a lot here about how important it is to think carefully about the words that we use
. To ensure that we don’t demonize autism as to allow it to be built back up into the mythical, mystical, larger-than-life monster that we’ve worked so hard to prove it not to be, and at the same time that we don’t glorify it in such a way as to minimize the severe challenges that so many face.
But – and this is a really important BUT – by saying that I think we should measure our words, I don’t mean to imply that we should ever take it so far as to scrub our stories clean for public consumption. And I sure as hell don’t mean to imply that we can’t stand up sometimes and say, “This is hard.” Because it is.
Respect for autistic individuals and their right to celebrate their autism if they so choose is paramount, but it can not come at the expense of sanitizing our narratives to the point where they’re one-dimensional – and not remotely recognizable or believable because they’re no longer real.
This road is not easy. It’s just not. Watching your child struggle is hard; feeling powerless to make it better is abject torture.
Admitting that this brand of parenting is emotionally fraught – that as beautiful and rewarding and exhilarating as it can be that it can also be conversely but equally painful and messy and HARD does not make you a bad parent.
Saying out loud that you’re hurting does not make you an enemy of the autism acceptance movement. It makes you human.
Our children struggle in ways that no child ever should. At times I swear that if my girl could climb out of her own skin she would. No matter how much incredible progress she’s made, no matter how hard everyone in her world works to try to help smooth her path, she still has to fight mightily every God-damned day. She fights to communicate, to connect, to participate, to interact – sometimes just to BE. As hard as it is for her Mama to watch, it’s got to be a hell of a lot harder for her to live. And that kills me.
To say that out loud does not make me a traitor.
It makes me her mom.
Ed note: I followed the suggestion that many of you made the other day to post ‘Walking Away‘ on Huff Po. The post is up (in politics, no less!) and I’d be most grateful if you’d click over, leave a comment and share the link. Thank you!! Click HERE.