I am very vocal about the stress that goes hand and hand with being an autism parent. It’s a topic that isn’t always talked about. I want to change that.
Autism is hard. Unbelievably hard. I have post-traumatic stress from it.
For one it’s often extremely loud. For me it’s Cooper’s screeches mixed in with the constant sounds coming from his devices. And my little guy loves it LOUD. Really LOUD. I’ve tried covering the speakers with tape. He rips it off. I’ve tried headphones. He refuses to wear them.
So, I say, ‘turn that down buddy’ 547 times a day. It’s a lot. I remember saying at Cooper’s 3 year old check-up that technology is ruling my life. If I had only known the future.
And for all you parent’s of typical kiddos…trust me when I say I am not happy about his technology obsession. It’s his life though.
Autism is often repetitive. Their actions. Their sounds. People with autism love routine.
Autism can be very messy. It can be destructive. It can even be dangerous.
Autism makes me feel so out of control that I want to scream.
His need for everything to be exactly the same in a changing, crazy world is almost impossible.
And I am the mom. The caregiver. I am here to keep him safe. Loved. And at times I don’t know how to do it all. And I often wonder at what cost.
Many times throughout the day I feel like I am walking on eggshells. I will do anything to avoid a meltdown.
Because the meltdowns are extreme. They are loud and can even be scary. Cooper will beat his head on a wall. Or even the floor. This is called self-injurious behavior and is common for nonverbal people. They can’t orally communicate what they are feeling on the inside so they hurt themselves on the outside.
It’s very, very hard to see. It makes me feel sick when I see him hurting himself. So, as you can imagine, I do anything to avoid it.
But what if I don’t always know the triggers? Or if the triggers change daily. It’s like I am playing a game with the highest stakes and I don’t know the rules. And my partner isn’t playing fair.
It’s trying to make every day the same as the day before. IF I do this the day will be fine. IF there are no hiccups. No late buses. IF we aren’t out of his favorite foods. Or favorite drinks. Or IF the WiFi isn’t out.
This is why I have 4 Kindles charging at all times. This is why technology rules our lives.
And this is why Cooper gets first dibs on what is playing on every television in the house. And why I give into his demands that every food MUST be in a bowl. And if we use a plate with sections then every section MUST have food in it.
This is why I always have milk and Capri Suns. And his snacks.
This all sounds crazy. Right? Like legit crazy. I know it does. It sounds unhealthy for me. It sounds like I am controlled by Autism.
Ding, Ding, Ding.
Autism controls every aspect of my life.
It controlled my marriage. It dictates how I parent. And my day. And my attitude. It controls my sleep. It controls my job. And my plans. And every single thing I do in a day.
This is so much more then parenting. This is being an autism parent.
It makes me feel completely out of control.
Then add in raising a typical 3 year old along side this chaos.
Cooper’s life is on repeat every single day. We need it to be that way. He needs it to be that way.
I wanted to share with ya’ll what Cooper’s home days ‘look’ like. He has a routine. A routine that is so long and drawn out that one might not even notice that it is happening. I notice.
I am pretty sure my sweet boy has worn a path in my carpet.
He goes from his destroyed room where The Good Dinosaur is playing on his tv, to my room where he tears apart my bed, to his brother’s room where he tears apart the bed, to the couch, to the kitchen table with all of his ‘things’, to the basement stairs where he has a snack, to the toy room. And repeat. He has a Kindle with him at all times.
This will go on for a whole entire day. From 4:30 am to 8:30 at night. The only changes would be meal time, bath time or if we go outside or leave the house.
Here is Cooper’s life in pictures.
Imagine this on constant repeat. We try not to get in his way. But at times doors will have locks placed on them. Mostly for my sanity. I can’t clean every single room. I can’t make every single bed.
But, when I remove one of his stops I will notice that he gets extremely anxious.
This is Cooper’s room. He first tears his bed apart. He will spend 15 or so minutes doing this.
Then he goes to my room and tears my bed apart. All the bedding, and any other ‘free’ to grab object gets placed into a pile in the corner of my room.
Onto his brother’s room where he will actually dismantle the bed.
Then to the living room where he will demand a show be put on the tv. He sits on the couch. It doesn’t matter who is sitting there. He is Sheldon Cooper. This is his spot.
Next stop is the kitchen table. He brings all of his items with him. Blankets, DVD’s, pictures. He always has a drink and snack and will go absolutely bonkers if we deny him food. He arranges every item with care and precision.
He then stops by our technology station. 4 kindles. Always charging. He will typically switch out his Kindle for a different one on each pass through.
In the basement he likes to destroy the toy room. I can always hear it happening. And I let it happen. This is an activity for him. He is playing. My wall is wrecked though. Sigh.
Then up the stairs he comes and goes back to his room. This is our life. Every. Single. Day.