We've Lost Control at Home.

ba5da47a5f1433a31ed23b81344f7b14When we bring the boys to a store we know that Cooper is a wildcard. And if you saw us you would probably have two thoughts….1. That mom is freaking insane and/or 2. Her kids are so well behaved. Why is she running around like a sweaty lunatic?

Funny, right. When I bring Cooper out I know that I will be the one that needs to manage the situation. Jamie always takes Sawyer. I will be armed with multiple kinds of snacks, a drink, a sucker, a phone, etc.  If Cooper gets even remotely squirmy he will get a huge hug and a squeeze and a tickle. I talk with him the whole entire time and point things out. By the time we leave I am usually exhausted and most likely bought 3 of the 10 things I went for. But the key is I know what I need to do in a given situation. If Cooper can’t handle the checkout line we leave. If he starts screaming and hitting his head he gets a huge hug and kisses on his neck until he laughs. I am a preforming monkey. And I do it well.

Our home is a completely different situation. We’ve lost control at home and I am not lying or exaggerating. It’s really, really bad. The screaming and the whining and the tantrums are out of control. The amount of TV Cooper watches is out of control.

I know what I need to do. I need to start using the PECs system and take pictures of everything Cooper does and create a routine. I need to remove snacks from Cooper’s diet so he is hungry at mealtime.  I need to either watch him whenever he has a sippy cup of milk or take them away unless he is at the table. I need to shut off the cartoons and make a schedule. I need to sit down and work with him for short periods of time on his colors and numbers and shapes. And I need to sit him on the potty.

The problem is I am so utterly and completely overwhelmed that I don’t know where to start. I can’t seem to get a grasp on anything.

EVERY SINGLE DEMAND he has goes from 0-10 instantly. I don’t want to be the mom that parks her kid in front of the TV but it’s the only thing he wants to do. And I beat myself up for it every second of the day.

A few examples.

Cooper wants a snack from the pantry. He points and I ‘guess’ at what he is pointing at. I grab the crackers. He screams and runs into the door of the pantry. Ok, let’s try again. I pick him up and have him point directly to the item. He points to a bag of Oreos. Now mind you it is 8:30 at night. I say no. He runs to the fridge and knocks off all of the magnets and papers on the fridge. Then slams the cupboard doors shut. Ok. How about a cracker Cooper? I give him a cracker. He wants two. I say no. He breaks the cracker up on the floor. And so on. I put him in his room, read him a story and leave. For the next 20 minutes he will yell down the hallway. And your guess is as good as mine when it comes to what he wants. Usually milk or another story.

The point here is I can usually guess what he wants but he isn’t able to understand the NO yet. So really, the tantrum is inevitable.

I completely shut down on Tuesday night during meal time. Dinner time is so bad that I dread it all day. We shut the cartoons off and put Cooper in his seat. No matter what we give him (even if he likes its) he takes the plate and slides it across the table. We slide it back. And so on. Then he picks up the food and drops it on the floor. And smushes it in his hands and rubs it on the table, the dog, his chair, his shirt, etc. And we’re off. Sawyer starts to mimic Cooper. Cooper gets more worked up as we try and give him a bite and begins hitting his head on the chair.

What I NEED people to know is that timeouts don’t work. A hand slap does not work. A no doesn’t work. Favorite foods or bribes don’t work. We…I, feel so trapped. I can’t get control of it.

I sat there and stared out the window as Cooper dumped out his milk and smeared it all over the kitchen table. I have never felt like that before. He was shrieking and hitting his head on his chair and I just stared. Meal times are so bad. He doesn’t eat or care to eat and I am to the point where I don’t care if he eats.

I have to get control. Jamie and I are completely and utterly worn down. I feel like I am at this crossroads in his life. I can give him a movie and he will be fine for a whole entire day. I could not live with myself if I did that but I can’t teach him anything.

And trust me, I have lowered my standards.

I have a busy couple of days coming up and I am running a half marathon next weekend. After that, I am figuring this out. We can’t operate in survival mode any more. It’s no way to live.


Avatar photo

Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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  1. Jenny Michelle Rapson on June 12, 2014 at 2:41 pm

    There was a long period of time when Sophie could not be bribed. I know what that is like. One example was when we were trying to get family pictures done. She was 3.5. The photographer was aghast that she could not be bribed to cooperate. She just wasn’t at that stage of development yet. It took probably another year before I could bribe her to get her to eat properly.
    You have a big job to get this all under control…you know that. It is TOTALLY overwhelming. I say tackle ONE thing at a time. Maybe schedule first, then controlling snacks, then screen time. Don’t try to bite it all off at once.
    HUGS!!! I know you have no choice – but HANG in there. There are a lot of us standing with you!

    • Avatar photo findingcoopersvoice on June 12, 2014 at 6:07 pm

      Hi lady. I am hanging on with both hands at this point. Honestly, I don’t even know if Jamie and I know what is okay behavior anymore. It’s getting to be quite difficult to tell! Hugs back at ya!

  2. kristenkj on June 12, 2014 at 3:09 pm

    I was going to say the same thing as far as “one thing at a time.” Baby steps. I wish I could help more…I wish there was something I could say that would be a balm, but I know that’s not all that likely. Just know that there are a bunch of us out here rooting for you, and for Cooper. He was given to you for a reason. Maybe that reason isn’t clear yet, and maybe it will never be clear, but it is there just the same.

    • Avatar photo findingcoopersvoice on June 12, 2014 at 6:07 pm

      Love this comment! I agree!

  3. Farmer Farthing on June 12, 2014 at 3:54 pm

    I’m with the other two on this one-one thing at time!

    Sometimes it’s a case of not being able to see the wood for the trees and that’s okay when you’re feeling overwhelmed but ultimately these are things that are stressing you out and therefore need to be tackled.

    Here are a couple of my suggestions:

    Move and remove things. You’re living in Cooper’s world now, not yours. If he has a meltdown and decides to rip everything off of the fridge, I would suggest removing them permanently (or at least for the foreseeable future!) My living room is set up completely for Oscar-the TV is bolted to the wall, there are NO ornaments or anything valuable in there, there are locks on the door (because he’s a flight risk) and a safety gate so he can’t wander into the kitchen by himself. If he has a meltdown whilst he’s in there I know he’s completely safe and the worst thing he could do is throw a few toys and cushions. It’s the same in his bedroom-no furniture except for his bed and a tonne of SOFT play toys. It doesn’t look bare or sad, on the contrary, it’s filled with things he loves to play with and is once again, completely safe.

    You need to let go of your concept of ‘normal’-it doesn’t apply any more! You have to do what is best for your child and you (for their safety and comfort and to reduce your stress levels!)

    Secondly, don’t let him see or have access to things in the pantry. Instead give him a choice of maybe two or three things as a snack before bed. He feels in control because he can ‘choose’ what he wants but you’re the one in control of what you want him to eat before bedtime.

    Next, Oscar has only just turned six and it was only about six months ago that he learned to sit down and eat (some!) dinner at the table with us in a reasonable manner. Ask yourself what’s more important right now- that he sits for ‘family’ dinner or that he actually eats?? If it’s the latter then don’t force him to sit at the table. Oscar would have a buffet type set up in the living room throughout the day and would eat what he wanted when he wanted it. Granted, it wasn’t the most ideal situation BUT at least he was eating!! And no one was stressing about trying to control his behaviours at meal times when the rest of us needed to eat. Eventually it was HIM who approached us to sit down and eat with us and it’s stayed that way ever since. Sometimes you just have to let things happen naturally.

    And lastly, buy a laminator and get your PEC cards sorted. I would say this is THE most important thing right now. They are life changing.

    Good luck and much love xx

    • Avatar photo findingcoopersvoice on June 12, 2014 at 6:08 pm

      Hey lady, I am going to start making changes soon. I have too. It’s going to be tough for a while but I think soon it will become the new normal. I can’t deal with the mess and the drama anymore. Its too much. PEC cards are coming my way!

      • Farmer Farthing on June 12, 2014 at 6:09 pm

        Good for you missus!! It may take him a little while to get into the swing of it but it is SO worth the wait!! 🙂 xx

  4. Jill on June 13, 2014 at 1:15 am

    I wrote a blog entry last year explaining some of the stuff we did with Mason when he first started therapy- it seems totally “basic” but he needed to start from the very beginning of developing communication. Not sure if you will find anything helpful. The photo book that I talk about was HUGE for Mason-it really allowed him to understand that objects had names and in turn start to be able to make requests and respond to basic commands. http://myyellowbrickroad0301.blogspot.com/2013/02/break-it-down-for-me-fellas.html

  5. Jill on June 13, 2014 at 1:28 am

    Oh I just thought of something else- Think of how Sawyer developed. Cooper is going to have to do everything in the same order (from mimicking, to gesturing needs and wants, to gesturing to share enjoyment, to babbling etc…) that Sawyer did in order to get to speaking. It all has to go in order. That is what I have learned from watching Mason.work on getting cooper to understand objects and people have names (with the picture book) and also work on having him look at you when he asks for something. You can do this by not responding to what he wants until he looks directly at you. I know that seems so basic but it will help. Once he masters those skills, you can move onto the next. I (obviously) am no expert at all but this is what I was told for mason and it has worked so far. It is really hard and it really sucks. You will feel like a therapist instead of a mother for a very long time. I still do. the person who said your normal is no longer normal is totally right. It blows.

  6. Cyn on June 13, 2014 at 4:42 am

    Hugs…..I think you need a big one and probably a bunch more but first I want you to go back and read what you wrote with this in the back of your mind “behaviour is communication.” It is as simple and crazy as that. Until he has a way to appriopratley communicate with you this is what is going to happen. Tossing food, tossing magnets, mushing food….he is telling you what he wants or that he disagrees with you. Another child who is verbal would scream and yell but tell you with words why he is mad at you or doesn’t like the choice. Cooper cannot so he is like a mime right now. I know its really hard right now but the thing is even as he is making a big mess he is interacting with you. He could be sitting in the corner staring at the wall and not communicating with you. He needs a better means to tell you.

    My son used to argue with me when he was non-verbal. When I told him something he did not like he would take a book and look me right in the eye and drop it on the floor hard. Then point at the book. If I still said no…he’d grab another and another and so on until 15 books were on the floor. I was more stubborn then him every time because you have to be. Sucks I know but he was communicating with me.

    Also how are you and your husband reacting? Are you calm during the chaos? Its super hard to be I know when food is flying etc. A lot of kids on the spectrum get “feedback” from just seeing the reactions from people when they do stuff. Its so darn interesting. Its a hard concept to wrap our brains around but seeing our big emotions are very entertaining.

    Where do you start? Take care of yourself…..and your husband take care of each other. Then take baby steps with Cooper and do what you know you have to do. You can do it.

  7. Kate @ Did That Just Happen? on June 13, 2014 at 1:51 pm

    Sounds like you are finding out what doesn’t work, and that is a good step towards finding out what does! Sending you good energy as you continue the journey!

  8. Minuscule Moments on June 16, 2014 at 11:54 am

    I can feel the burn out and it is overwhelming, so confusing because you feel like nothing works. Like every one else here has mentioned pick one tiny basic skill, only one and learn that one thing for as long as it takes. Don’t think about the big picture it always feels too big. Break it down and hang tight you are doing an amazing job and I really feel for you and your beautiful family. xxxx