Just Tell Us What To Do

0244d54cb569d0e853d2b70feb3492a6Please God just tell us what to do. Simple as that.

Cooper had an epic fail at speech today. As I type this I am actually shaking my head because it gets worse every single appointment. How? Why? Someone reading this might actually think I am joking. Or exaggerating. Trust me…I am not.

I took Cooper to his speech appointment this morning alone and he did well for the first 20 minutes. Yes, he hopped from activity to activity but we were able to engage him. His therapist loves him and is so great. She cares and listens and is a really great person. I spoke with her about last week and the evaluation by the psychologist. I told her that I am not in the right place to diagnose Cooper yet. And she agreed. She sees too much potential in him and said that we need to focus on language. I agreed.

After 20 minutes or so Coop was done playing and wanted to go on the computer. Mind you we are in a closed room the size of a closet and the computer is outside a closed-door in a room with the lights off. And the computer is off. Cooper has played on the computer twice at speech and LOVES it. It makes him happy. And he even engages with his therapist while doing it. The problem is that he won’t transition away and the appointment becomes a waste. Toni informed me that he needs a break from technology at speech. And I agree. I just knew it was going to be bad.

For the last 20 minutes of the appointment Cooper screamed. He pushed. He rolled. He threw the mother of all tantrums. And in usual mom fashion I said the words that I hate to say…”I’ve never seen him like this.” And it’s true. Cooper is worse every time we go there. So why the hell do I keep bringing him?!? I held him with all my strength on the floor just waiting for it to pass. And it didn’t. So we gave up.

As we left the therapy room, Cooper ran around and screamed. He pushed chairs. Two men were there fixing the heat in the building and witnessed my little angel’s meltdown. I was beyond mortified. As we made our way to the exit I tried to wrestle Cooper into his coat and hat. He went limp as a noodle and did the army roll across the floor.  And then the tears started coming. I looked right at his therapist and sobbed. I blubbered something like…”I can’t do this anymore. I hate it. I bring him here and I leave hating my child. He is the worse. Blah, blah, blah.”

She told me that he isn’t the worst. He is bright and is learning.  We just need to be patient and give it time. She helped me out to my car and attempted to get Cooper into his car seat. At this point he had been sobbing hard for close to 20 minutes. As I buckled him in he puked all down the front of his jacket. And on me. It was great. Just great.

I don’t think I have anymore patience or time. I need answers. I need solutions. I need my child to be different. Or I need to accept who my child is and learn to live with it. One or the other. Maybe I am the problem and not Cooper. Maybe that’s it.

Lastly, we might have to move to a bigger city where there is more help. We would be closer to family and there would be more resources available to Cooper. Where we live now we have no one. So many questions right now and very few answers.

 

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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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11 Comments

  1. Amber Perea on January 21, 2014 at 7:19 pm

    I’m going to share something with you that I learned in my journey that you can choose to completely discard if you want…but I know where you are and how it feels.

    He’s not worse. He’s being forced to do something that he doesn’t want, he is three, and he doesn’t have the language to tell you how he feels. He can only show you. That comes at that age with screaming, tantrums, and throwing things. It’s normal for where he is. He’s not bad…he’s expressing himself the only way that he can.

    Jp’s therapist didn’t like to use technology, either. I use it like their is no tomorrow…because that is how my son learns. But it takes a while for him to understand because she let him use it before. When there is a language/communication disorder…these things come more slowly. And often with tantrums. But, again, that is all he knows how to do to tell you he’s unhappy.

    Just know that he’s three. Three year olds are moody and like to get their way. Don’t take it personally. Don’t beat yourself up. And answers won’t change it. The only thing that will will be learning to communicate. Signs, a PEC board, whatever works for your family.

    Hugs. I know how hard it is to be in a place of uncertainty. And looking at your child like Raegan from the Exorcist. But it gets better…you just have to find what works. That’s the hardest part.



  2. Amber Perea on January 21, 2014 at 7:19 pm

    I’m going to share something with you that I learned in my journey that you can choose to completely discard if you want…but I know where you are and how it feels.

    He’s not worse. He’s being forced to do something that he doesn’t want, he is three, and he doesn’t have the language to tell you how he feels. He can only show you. That comes at that age with screaming, tantrums, and throwing things. It’s normal for where he is. He’s not bad…he’s expressing himself the only way that he can.

    Jp’s therapist didn’t like to use technology, either. I use it like their is no tomorrow…because that is how my son learns. But it takes a while for him to understand because she let him use it before. When there is a language/communication disorder…these things come more slowly. And often with tantrums. But, again, that is all he knows how to do to tell you he’s unhappy.

    Just know that he’s three. Three year olds are moody and like to get their way. Don’t take it personally. Don’t beat yourself up. And answers won’t change it. The only thing that will will be learning to communicate. Signs, a PEC board, whatever works for your family.

    Hugs. I know how hard it is to be in a place of uncertainty. And looking at your child like Raegan from the Exorcist. But it gets better…you just have to find what works. That’s the hardest part.



    • Avatar photo findingcoopersvoice on January 21, 2014 at 8:08 pm

      I know you are right. All of it. Part of me feel so bad that Cooper has to be in a speech setting. Trust me, I know it’s not torture. They literally play the whole time but I still hate that my 3 year old has to be in a school setting already. He has his whole life to do this. It’s all so tough.



      • Amber Perea on January 21, 2014 at 8:12 pm

        It is. It’s really hard. But it gets better, I promise. Little tricks like timers and PEC boards for transitions and routines, signs, and working on identifying and expressing emotions helped us a lot. 🙂 Getting books or games that talk about feelings and anger might help. 🙂



  3. mewhoami on January 21, 2014 at 11:14 pm

    It may seem as though he’s getting worse every time he goes, but he needs this in order to get over the ‘hump’. Making our kids do things that are outside of their comfort zone is crucial in their development. I don’t know him personally, but I would bet that within a few weeks you will see a transformation in him – a good one. You will see that the tantrums and the tears have paid off. It takes an enormous amount of patience, but it’s worth it. Just hold on and most of all, remember to breathe.



    • Avatar photo findingcoopersvoice on January 23, 2014 at 1:44 pm

      This comment meant a lot to me and I am hoping and praying you are right!



  4. A Miracle In the Works on January 22, 2014 at 7:07 pm

    No words of advice just <>!



    • A Miracle In the Works on January 22, 2014 at 7:08 pm

      That should read: HUGS!



    • Avatar photo findingcoopersvoice on January 23, 2014 at 1:43 pm

      Thanks lady!



  5. Jenny Michelle Rapson on January 30, 2014 at 11:35 pm

    Dude, the puke would’ve sent me to the looney bin! My oldest who is my only “typical” child used to scream til he puked. It was the worst! One time I sobbed in front of the pediatrician when he was throwing a big one (he was sick and not handling it well) and the pediatrician was all…um…maybe you need to talk to YOUR doctor…it was really embarrassing. BUT ANYWAY.You are a strong mama. You are just what Cooper needs, even when it doesn’t feel like it. Even when it sucks big time. Hang in there! It will all be worth it. And will have this great record of how far he’s come.



    • Avatar photo findingcoopersvoice on January 31, 2014 at 7:27 pm

      Ok, pretty sure we have the same doctor too!! I’ve had a few moments like that. Send me to the looney bin and throw away the key! It will be a nice vacation!