A Day In Cooper’s Life: Autism in Pictures

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.

Why?

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.

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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.

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Onto his brother’s room where he will actually dismantle the bed.

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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.

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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. 

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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.

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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.

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Then up the stairs he comes and goes back to his room. This is our life. Every. Single. Day.

 

 

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7 thoughts on “A Day In Cooper’s Life: Autism in Pictures

  1. You know mama, I wonder if it might be time to stop trying to keep the beds in order…or is tearing apart the beds a soothing activity for Coops that he HAS to do? If Cooper could live without that activity, I think I might just throw a mattress and a blanket on the floor for everyone and call it a day, cuz that is a crapload of work for you.

    My ASD son went through a horrendously destructive stage at ages 1-3, and I felt like I was traumatized from the sound of furniture hitting the walls. Now at age 5 it’s a lot better, but I’ve still nicknamed him The Hurricane. I would say my main challenge at this point is the super loud ipad playing at all times which makes me NUTS, NUTS I tell you (I know you understand). If I had to deal with the level of household destruction you’re dealing with it on top of the noise, I’d probably be either an alcoholic or in an insane asylum.

    Hats off to you sister; you have a hard job.

  2. Wow. That sounds utterly, completely, mind-blowingly EXHAUSTING. Thank you for including the pictures. It’s one thing to read about it, but seeing it is quite another. You are Superwoman.

  3. Oh if I could reach though this comment to give you a hug I would! I understand my friend. My 4.5 year old son is self injurious too. I have hundreds of dents in our Stainless steel fridge from his head. :(. I COMPLETELY understand your feelings of post traumatic stress; I’m there too. It’s heart wrenching watching your beautiful baby go running into a glass door or cement wall on purpose. The heart stopping moments where you just can’t get there in time to stop the assault on themselves as the eye socket bounces off their own bent knee.. So SO many times that you want to scream at them “STOP!! STOP HITTING YOUR HEAD!” Asking yourself WHY??? but he can’t tell you. The meltdowns…over a Kindle. I want to smash it with a sledgehammer some days. I have three boys age 7, 4.5 and 6 months. It’s not just an Autism thing; my 7 year old is obsessed with his too. SO much so he now earns tablet time by doing little “extra” chores. I can’t do that with Marc , of course, so explaining to my oldest why Marc gets free reign on a fully charged tablet is difficult sometimes.
    I cried myself to sleep pretty much my entire pregnancy and laid awake searching for causes to figure out what environmental contributor triggered Marc’s autism onset at 24 months. If I could prevent this baby from the challenges that Marc faces each day, I would/will. I get the anxiety you feel; I’m there. We have started a program however at Seattle Children’s Hospital Autism Center to help Marc overcome his self injurious behavior. We drive 6 hours a week to make the two appts. I am hopeful; they have told me they believe Marc can overcome it with my help. We have many many weeks of therapy to go. I will let you know if it works.
    I recently saw a clip about an autistic girl named Carley .Fleishman. I sobbed when I saw it because it gave me hope and helped me to understand my son just a sliver more.
    Anyway, thank you for your blog and sharing your journey with us and thanks for letting me share a bit of our story with you. πŸ™‚

  4. I just found your blog. I teared up reading your articles. I also believe not enough is being said about autism, and if we do, we are critiqued as mothers.
    Your situation is much harder than ours. We have a boy with mild Autism, yet almost everything you said, we also deal with daily, but with less intensity.
    The meltdowns, the walking on eggshells, the fussy eating, why we avoid restaurants altogether, the ipad which is glued to his hands practically, the biting of his hands when he’s mad, and how his 8 year old brother is baffled and upset by him hourly.
    Thank-you for your blog…I’d love to chat more.
    Anna, Kelowna, B.C

    • Hi Anna :). I dont know if you read my comment above but i see you’re from Kelowna! I am originally from Penticton :). I am immersed in these feelings we all seem to share. I have a semi non verbal 4.5 year old son who is also self injurious. We are going to seek out a respite care provider to just have a few hours a month to decompress. I am coming to find that there are many programs that help to pay for this. We also just Anyway, ***hugs*** from a fellow autism mom πŸ™‚

      • ***whoops…sentence was cut off. Was going to say we also just started focussed ABA to help him overcome SIB. There is a program at Seattle Childrens hospital Autism Center to help children overcome SIB, agressive and destructive behaviors. We just completed the study of the behaviors soecific to Marc and start the therapy portion Monday. :). I am excited to share anything i learn from this with everyone interested.

      • Thanks Jodie! I have an instagram page but only post a few autism posts. Here it is if you use instagram: calebjack01 Blessings xo

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