S is for Skeletons
(edited and reposted from 4/2015)
In a way we are luckier than many in that when you meet A2, it is clear he is generally sweet and happy. It is also clear that he is a 10 year old with limited language and an intense fascination with things like dangling light bulbs and garage doors. This combination is like a free pass since it would be weirder to not acknowledge it, I get to talk about it.
But just a little bit.
It’s not exactly like airing dirty laundry. It’s more like airing dry cleaning–the-sort-of-dirty-nicest-silk-dress-in-my-closet kind of laundry. Let’s face it, there are socks and skivvies in all of our hampers we wouldn’t dare let hang out on the line in the backyard. For us, in the best of our worst case scenario of autism, A2 can make autism seem almost ethereal. And he IS inspirational. Despite his challenges he plows through life with a joy and wonder as if even the slightest thing is something he has seen for the first time. When we hire aides to work in our home, I warn them in advance that their work space is located in the darker cubicle of my life. While it can be a place full of love and ideas and fun, it is also the space where anxiety, anger and compulsiveness roll up like dust bunnies in the corner. They are invited into that laundry room to watch me fold those things we can’t hang outside to dry. They get to see the worst of the best case scenario and of course are free to form opinions or quietly judge. These young women know more than my “inner circle” of friends and it is not a comfortable place to be, but I let it happen for the benefit of my child for whom alone I could not be successful.
Why would I focus on this today when I have shared more about what it’s like on social media than I ever intended? Because we are “out” and wholly connected with the special needs community. There are revolutionaries who have adult children and walked with a yoke of all the things autism brings around their shoulders before anyone knew what autism was and never got the help they needed, so they created it for us. There are families you may know who can’t take their children in public for fear they won’t be safe to themselves or others. There are those who walk among us invisible–who closely protect their tangled criss-cross of laundry lines for fear of being judged, or worse yet, for their child being judged over something beyond their control. These are the people who might need to be seen and understood the most because they are not likely connected to a community who will understand. This is also autism.
Awareness is not just about what we do see, it’s also about what we don’t. If you are a revolutionary or an invisible family, reach out to me…tell me you are here….and if you are feeling brave, let me tag you on this post.
Love This!!! I’m not a mom, and after work with A families, I resume life without the wild wails, the poop (I said it), the unending scripts, or the struggle, and yes I sometimes feel off pangs of guilt about while waving goodbye. So I know nothing about how real it really is. Having said that,
I love my work because IT IS REAL and even though I know they seem like dark cubicles where un-air able laundry exists, your corners are filled with invisible shards of gold. To me, the honest darkness that reveals itself to me when entering a familiies world is refreshing. Not a dark cubicle at all, but where roses of truth live, nurturing vulnerability, strength, adaptation, creativity and resiliency that we so rarely glimpse while meandering through the mess of pretense, stagnancy, and the appearance-central, emotionally vacant candyland game where “life” is lived by most neurotypicals. Thank you
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As I am updating this post for Autism Awareness Month 2019, I have only just now seen your comment. I am sad I did not see it until now–what a powerful thing to say. Thank you!