I stumbled across a post today on Facebook titled, ‘My Son Has The Kind Of Autism No One Talks About-Term Life’.
“Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people. This is the autism that no one talks about. This is the autism that no one wants to see.”
This is Cooper.
I have been fighting how severe his autism is for so long. I refused to say it out loud. We faked it. We hid it.
It’s been an internal battle that has kept me awake at night. Caused me to lose weight and gain weight. Caused me to drink way too much. Caused me to lose friends and family. I’ve pushed people away. I’ve made terrible mistakes and choices trying to escape the trapped feeling Cooper’s disabilities have caused me. I ran from it. I hid from it. I took it on headfirst.
And you know what….NOTHING WORKED.
He’s still autistic. He’s still severe. Still non-verbal. And I feel more trapped then ever. Our family is still broken.
I couldn’t outrun it. No matter what I did he is still severe. I feel like I failed.
I still feel guilty when I say Cooper probably isn’t going to talk. He isn’t going to be the boy that gets asked to prom. He most likely won’t shoot the winning basket at a basketball game. I know it in my heart. His autism is severe.
He isn’t a genius. He has no amazing skills.
He’s just a boy. My boy. My challenging, exhausting boy who with an isolating disability.
We stopped going places. We stopped going to birthday parties and parks and beaches. We hide in our home on the weekends. All because I can’t handle my own son alone. He’s too big. I can no longer carry him…although he requests and I will try. He puts everything in his mouth. He picks his nose constantly and eats it. He screams and shouts and points. He flaps. He destroys.He typically refuses to wear pants. He runs around naked constantly. He wanders. He refuses to sit.
He’s five. Wait until he’s ten. Or twenty.
I post adorable pictures on Facebook of my sweet boy. I do this because I love him. And people are not away of what severe autism really is. It’s not cute. It’s not a joke. It’s real and hard and scary. It’s head hitting. And a whole lot of kicking. And getting punched in the face in front of people and trying not to cry because you are the mom.
It’s laying in bed at night thinking about how you can’t die before he does. And realizing how poor you are and putting money away for him isn’t possible. It’s really big things that rest on your shoulders.
It’s broken relationships and broken people.
It’s giving up every single damn day and starting over at 4:30 am the next morning. Because that’s just the kid part. Then you have the fight for therapy and services. You have appointments and emails and the money side. The list goes on.
Like this lady says in her wonderfully written post…WE ARE NOT AWARE.
Walk a mile in my shoes. Hell, take 5 steps. Then you’ll know.