There are sides of autism that people don’t talk about. Just like there are sides to everything that people don’t talk about. Like if someone would have told me what really happens after you give birth. You can’t poop. Your nipples actually bleed. You cry…a lot. You will fight with your spouse. Acne, sweating, hair loss, etc.
If someone would have sat me down and said…you might get really, really sad. You might hold this baby and love them and be afraid of them at the same time. You will be so sleep deprived that you won’t know what to do with yourself. And you will look at your body and cry. You won’t even recognize yourself. And everyone around you expects you to be overjoyed. Overwhelming is an understatement.
But there is so much joy too. The joy outweighs the hard stuff. That’s the balance of life. And it gets better.
There is really hard side to autism too. And most people don’t talk about it. They choose not to. It can be scary and dark and it doesn’t fit into the pro autism movement out there.
There can be biting. Or violence. Or self-injurious behaviors. I’ve had moms email me about not being able to handle their teenage autistic children. And I don’t know what to say. My heart is broken for them. They feel like failures. And they are most definitely not but they feel that way. And I would too.
These babies are going to grow up. Cooper is going to be five. He weighs over 50 pounds. With age comes more advanced emotions and needs. Managing him is only going to get more challenging.
You look at this kid and you think….he is so beautiful. And he brings so much joy to everyone around him. Not a day goes by where I don’t get an email from a teacher or an aide or even a stranger where they tell me how Cooper and I have changed their lives. He gives hope and strength to so many people.
But that is the daytime. And that is the good stuff. That is the joy. That is the easy part.
What about the dark parts. The parts that no one talks about.
Changing an almost five year olds diaper. Digging poop out of his butt. Giving him an enema in the bathtub and watching him hold it in still. It’s heartbreaking.
The constant constipation. When Cooper is in pain he is like a caged animal. This is human nature. But god it’s hard.
The head butting. Cooper can throw a head with the best of him. Everyone in our family has been victim to a Cooper head butt. Fat lips and black eyes are all too common.
Watching him hit his head with his hand or worse…on the floor or a wall. Watching him scream and demand and not understand why.
Watching him hit his brother or other kids.
Begging and pleading with him to eat…anything. Eat any food.
Watching him throw and break stuff. Trying to get him dressed. Taking a swift kick to the stomach day after day.
The struggle to learn. The lack of desire to do anything.
Watching him move constantly…at all times. Constant fidgeting. Constant. He can’t shut his body off.
The isolation. I didn’t take Cooper anywhere besides therapy for 2 years. I couldn’t.
You watch other babies grow and become people. They pick up on skills and adapt to the world. And we stay the same. And celebrate the use of a fork and pray for the use of a cup and not just his sippy cup.
This is the ugly side of autism that no one talks about. We preach about autism awareness and acceptance. About kids lining stuff up and being super genius. You think Rain Man.
Well, my kids not a genius. He doesn’t have a special skill. And he doesn’t have an insane talent. And he can’t talk.
That’s my autism. I dug poop out of Cooper’s butt last night. And he lost his ‘using the toilet’ skill. Just like that…it’s gone. No more peeing on the potty. And, he wakes up every single morning before 4 am. So that’s what I’m dealing with.
I’m not perfect. This morning Cooper did something disgusting. Yes, it could be called a childlike behavior but when you stack behaviors on behaviors it can easily continue to happen.
I took off his diaper this morning and he got mad at me. I didn’t know why…nor did I take the time to figure it out. I scolded him and said something like…’Come on buddy. Mommy’s tired. Just take your diaper off.’
He melted down. Like a true, all out meltdown involving kicking and screaming. And before I could react he pulled poop out of his butt and smeared it on me.
At 6 am. Before work. On a Friday.
I yelled. Loudly. And I scared him. I told him that he is almost five and autism or not we DO NOT smear our poop on mommy. Never. It will not happen. Not today and not ever. It was loud and involved a squeeze of the arm. And it was ugly. And it scared him badly. I was most definitely not mom of the year.
This is the ugly side of autism. The behaviors that turn me into a crazy person. Like when he strips down his bed every day. Strips off the sheets and the blankets. Or when he piles every single item from Sawyers room into his crib. Every book, piece of clothing, toy, diaper, etc goes into the crib. Sigh.
Or thows stuff in the toilet. Makeup brushes, combs, hair ties. You name it. He’s thrown it in.
In public I have my shit together. I can do it. I have perfected the smile and the giggle that is needed to survive.
But, it is very different in the middle of the night, when I am so tired, and so unbelievably worn down and the ugly side of autism rears its head.
Mom of the year quickly turns into “Remember you love this kid and it WILL get better” mom.