Watch Me Turn Invisible

01ab0a6630a4dbe615e9792802c637caOn Cooper’s Autism roller coaster there are good and bad times. They last about a month or so and the bad months feel like an eternity while the good times feel like they last a hot a minute. During the good times Cooper eats without a struggle, goes to bed great and even sleeps past 5:30 AM. And most importantly, the whining is at a minimum. To put it simply, something just clicks for him.

Last week we had a switch from the good to the bad. I knew instantly. We sat down for dinner and he pushed his plate away and shrieked. I pushed it back and he pushed it off the table. I even commented to Jamie that it was starting. The ‘Tism was returning. I was so freaking right it’s ridiculous. Cooper’s been up before 6 for the last week. He fights us at bedtime. He stays up later. He’s throwing. He’s not eating. And most importantly, his side swing of emotions is back. The list goes on.

I suppose it could say it’s stemming from the EXTREME changes in our life. Our house sold in a day and we close October 10th. Cooper starts school at Fraser on October 6th. The stress at home is high. Higher than usual. We need to pack up our whole lives and start over in a new city. (Cue dramatic music!) This shit is SCARY. But, I don’t think that is it at all. Cooper doesn’t understand. He has no idea that we are moving or that he’s starting school.

So I wasn’t surprised when I found myself once again hiding in my room on Saturday night clutching the phone and unloading on a friend. I was crouched down in between my bed and nightstand while Sawyer banged on the door screaming Mama and Jamie tried to distract him. How did I get there you ask?

Trains and TV. Those little SOB’s got the best of me.

Cooper decided this weekend that he wanted to ‘play’ trains again. I am air quoting ‘trains’ because it isn’t playing in anyway. It’s me (or Jamie) setting up the track while Cooper grows increasingly more frustrated. He picks his train and the cars that the train will pull. There is absolutely zero modifying what he wants. If the train falls of he screams and destroys the track. If Sawyer touches the train he screams and destroys the track.

By Saturday evening it had been a long day. The day started at 5 am and we had our home inspection and both boys missed their naps. Jamie ran to the store around 6 pm to grab milk and Cooper led me to his room to ‘play’ trains. I set it up and it wasn’t working right. I think a battery needed to be changed. And then the train fell off the track. He threw the trains and destroyed the track. So, I tried again to set it up and silently counted down the minutes until bedtime in my head. Again, the train fell off. So this time he threw the train, destroyed the track and knocked all the books of his bookshelf. I stood up and screamed, “You’re done. This is done. No more.” And I kicked a train down the hallway. James to be exact.

Yes, I am 31 years old and my Autistic kid got the best of me. Totally. And as I nursed my hurt foot, Sawyer kicked the same train. I had to laugh. Blah. I walked down the hallway and Cooper hung on me and screamed. And it went on. He just couldn’t understand why he couldn’t watch his train. There is no explaining or reasoning.

I think what I want to say is I can’t handle his emotions. No matter how calm and patient I am there is no dealing with 12 hours of that shit.  They are so stressful. I know he isn’t mean in anyway. There is no violence. He just goes from zero to a million in less than a second. And he screams and runs and rolls on the floor. And lately, hits himself in the head. Let me tell you how fast this mama reacts when Cooper starts to hit himself in the head. It’s awful.

At this point I called a friend, which I NEVER, EVER do. I unloaded. And as I did this Sawyer grabbed a box of spaghetti noodles and dumped them all over the floor. The second Jamie got there I went to the bedroom and hid.

I want to run away half the time and the other half I want to fix my kid. It’s a constant struggle. To put it simply, I’m afraid I am becoming invisible. I am not the same person I was before I had Cooper. I don’t even recognize myself anymore.

Cooper woke up at 5:30 on Sunday morning. That’s the shitty part…it starts over immediately. There is no break. And like I said, the bad streak has returned.

At this point we had one TV in our home…in our living room…and it is completely controlled by Cooper. The second Cooper wakes up he wants to watch his movies. He grabs the remote and my hand and it’s high stress. No matter what I am doing the video has to be fixed immediately. Try explaining to a nonverbal 3.5 year old why Netflix isn’t working at 5:30 am. You can’t. It’s a lose-lose situation. And it makes me sick to my stomach. Cue head hitting and shrieking and running into the couch, etc. If it didn’t make me so stressed out it might actually be funny.

When I woke up on Sunday morning I made a decision as I put a video on for him and climbed back into bad. NO MORE. This has to end. I can’t live like this. He is controlling our lives with that damn TV. When Jamie woke up we grabbed an old 13 inch TV from the garage and set it up in Cooper’s room.

I like to refer to this as the beginning of the end.

I have fought from day one putting a TV in Cooper’s room. I am 100% against it. I knew I would never see him. But I had to do this. I needed one day with the TV off. No sound. No Thomas or Barney.

Bad weekend.

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Comments

  • tara

    September 16, 2014 at 5:17 pm
    Reply

    Oh girl I feel ya! Constant internal angst. He good he's gonna be okay. An hour later he's stuck on studying the holes in the […] Read MoreOh girl I feel ya! Constant internal angst. He good he's gonna be okay. An hour later he's stuck on studying the holes in the park bench - let's go we are done here. It's too much to decipher between what's normal what's not. Plus I can see other parents thought bubbles. I was them before kids. It's sucksss but it's our life. Our kids are ours and "this" whatever it is, is not their fault. Empty words i know, but I always feel guilty after for losing my shit and have to come back to that. I wish I could fast forward past these young years several x a day! The amount of invisible tears I cry in a week is too many. Anxiety!!!!!! Then he will mimic a word or give me something promising. I live another day. Ugh. Good timessss. Read Less

  • findingjonah

    September 16, 2014 at 11:55 pm
    Reply

    First of all you know my heart goea out to you. I kbow this is hard. With that in mind, I fully believe Cooper is […] Read MoreFirst of all you know my heart goea out to you. I kbow this is hard. With that in mind, I fully believe Cooper is playing you. He has your card and he knows just how to play you. He may not be able to communicate with you, but he understands what is going on. Jonah used to do the same exact thing with the tv in the morning, even waking up before 4am. I finally said enough. Some toys in his room and a baby gate at the door were all it took. He would wake up and scream and then, stop. After about a week he stopped getting up early. Read Less

  • findingjonah
    to findingjonah

    September 16, 2014 at 11:59 pm
    Reply

    I got cut off!! Lol Do not let Cooper run your house!! Yes, he has autism, but he is first a child. When he […] Read MoreI got cut off!! Lol Do not let Cooper run your house!! Yes, he has autism, but he is first a child. When he destroys his train tracks or throws toys, put him in time out. Explain why he is in time out and if he does it again, he will get the toys taken away. It is okay to discipline him. It's your right as a parent to say no, whether your child has autism or not. Read Less

  • Jill

    September 18, 2014 at 12:28 am
    Reply

    Can you put the trains away for a few weeks? I know you cannot do that with the television. But I have had to do […] Read MoreCan you put the trains away for a few weeks? I know you cannot do that with the television. But I have had to do that with Mason a few times when he becomes obsessive. I think I told you one time for a few weeks, I had to hide milk! I think I might need to hide airplanes now too. He is lining them up like crazy and just gets mad out of nowhere. The time outs are not appropriate for this situation IMO because he isn't "being bad" or "having a tantrum"...something is triggering almost an anxiety attack- it is like he loses his mind. He wouldn't comprehend the time out. He is upset, and why would we put our kids in time out if they are upset? They are not being bad...something is triggering them to get upset. So...for now what I do is just put away whatever it is he is obsessing over and then in a few weeks I can take them out again. So far it has worked for alphabet letters, and milk LOL Read Less

  • tara
    to Jill

    September 18, 2014 at 12:52 am
    Reply

    Well said.

  • Rowan

    September 19, 2014 at 12:37 pm
    Reply

    I Agree with an earlier post that consistent discipline is important for any child autistic or not BUT it must accommodate their style of learning. […] Read MoreI Agree with an earlier post that consistent discipline is important for any child autistic or not BUT it must accommodate their style of learning. I haven't read anything about what communication systems you are implementing at home, but a picture based system will help cooper to understand things like time outs. He also needs an alternative means to communicate other than screaming. 'Use your words' can become 'use your pecs' or communication device. He sounds just as frustrated as you and Jamie. X Read Less

  • the jay train

    October 6, 2014 at 8:18 pm
    Reply

    I've been in that position so many times with my son so I totally understand that any advice you get sounds great until it's time […] Read MoreI've been in that position so many times with my son so I totally understand that any advice you get sounds great until it's time to implement it. It is possible to discipline him though. And it's necessary. Rowan is right. You gotta find a way that works for you and for him. For us, It was hard and Jay did have awful tantrums and he cried and screamed so we had to ride that out but when he realized that wasn't going to get him what he wanted he adjusted. Until the next thing came up that needed adjusting. Cue more tantrums and cries and screams. But it has gotten better. Even if he tantrums now it doesn't last as long and he will now try to find ways to calm himself down. Good luck! Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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