Cooper Has The Kind Of Autism No One Talks About
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.
[youtube https://www.youtube.com/watch?v=NhFpBYYxlXI]
Thankyou for writing this amazing piece which is so very real for many people. You don’t know it until you have lived it! This is what we have recently gone through too! Its very tiring!
Just sending you love and hugs.
So glad you are telling your story.
❤️
Your post is raw and real. It’s also brave and made me gasp because I kept breathing in as I read that I forgot to exhale, so drawn in was I. I loved many things you said, and I especially loved when you wrote about putting cute pictures out there because you love him. Of course you do, you’re the mom. Thank you for your honesty, mom.
No words. ?????
We have friends who have a now 16 year old daughter who has I guess close to what your son has. She does speak, very well in fact, but whether or not she could ever be on her own is doubtful. I marvel at their persistence with her. It’s been a struggle to get her help and resources, etc., and I don’t know that I would have the kind of drive that they or you or all of the great parents of autistic kids have. Their daughter came home last week and said she was asking various people to go on a friendship date with her, and they all said they had plans that night, even though she hadn’t given them a date when she asked. That would be the hardest part for me, the not fitting in with peers and trying to get other kids to be more accepting and empathetic. I wish you the best with your sweet boy.
Holy Shit. I just randomly found this post because I had tried to find the original “my son has the kind of autism no one talks about” article to re-post it on FB, because my link didn’t work. And I saw your post. And *I* have a son named Cooper, who is non-verbal, and much more severe than I really want to admit. Who is getting too big to carry all the time. Who punches me and pulls my hair in public and I try to be chill about it. And who can’t follow simple instructions and is 4 years old and no where near ready to potty train – and yes, now loves to get into his poopy diaper. And has an other-worldly laugh that is so funny and contagious, it seems like it’s coming from a different person altogether.
And I can not die before him either. Who will love him and care for him like I do? What other mothers out there actually hope their child dies before they do, so that they will always be taken care of?