A Super Cooper Update

fa653445bb35d6f862c1dfad945ca536I haven’t given an old fashioned Cooper update in a long time. I remember reading updates when I used to follow a lot of autism blogs and comparing my kiddo to theirs. I would be like, Cooper can do that but wait, oh, shit, he can’t do that. It was good and bad. So, don’t do that. No comparing. Each kiddo is different.

Language:

No words at all. He doesn’t even have a sound for a word. Nothing consistent at all. That’s hard. I always wanted him to make a consistent sound for mom or cookie or iPad or whatever. Not yet. Still hoping on that one. He can make vowel sounds unprompted but needs a prompt for the ‘h’ and ‘m’. All of his noises still come from his throat. Lots of squeals, shrieks and grunts.

Cooper received an iPad from Talk to Me Technologies and is using it consistently at school. He is really doing a good job with it. I have yet to use it at home. I am going too….i’m just not quite ready yet.

Socialization:

95% of Cooper’s time is spent on an iPad and I AM COMPLETELY, 100% OK WITH THIS. I tried for years to keep that kid off technology. I brought out art and activities. I bought every single art supply possible. Playdough, bubbles, paint, clay, you name it. I bought it. I spent hours on pinterest trying to find activities that he would do. I think there is even a video somewhere on this blog of Cooper doing shaving cream art. My motto for that…I TRIED. I no longer force it. Cooper is invited to do everything that Sawyer and I do. He is not forced. Not my battle friends.

Back to the iPad. I am very picky about the apps he uses. I removed the internet completely because I couldn’t keep the kid off YouTube. He got obsessed and before I knew it he was watching the oddest things. And at one point I overheard a voice saying….”and then we blew up Japan.” I was like, WHAT, WAIT, WHAT ARE YOU LOOKING AT? So the internet came off. His iPad has the following apps: PBS Kids, Nickelodeon Kids, Sesame Street, Elmo, Dora, a dozen or so Curious George apps and quite a few alphabet freebies. He loves the alphabet. So for anyone that cares…he is not playing video games.

Cooper still ignores kids for the most part. He will play with Sawyer for a few minutes here and there. He has learned how to sign ‘mine’ and when that doesn’t work he pushes his brother right over. He can hold his own now. And I am damn proud of that.

He plays with no toys. None. At random he will still do a puzzle and ‘reads’ books every night before bed.

His favorite activity continues to be swimming. Or as I call it, splashing around. I try and take him to a pool once a week. I tried to do swimming lesson and he just wasn’t ready. He still can’t handle anything organized like that. He doesn’t see the point.

Self Grooming/Potty Training:

Coops has zero self-grooming. His school told me that he can pull up his pants when prompted but he won’t do it for me. I still dress him completely. He actually doesn’t do anything for himself. Except, put himself to bed. Around 7:30 each night he crawls into bed and waits for me to read to him. LOVE!

He loves bath time except for a week period where he had a bunch of enemas. That traumatized him a bit.

12742549_1046528428726228_8935739395727588642_nCooper stays dry at night but still wears a diaper. If I put him on the toilet within seconds of waking up he will pee in the potty. Also, if he is naked he will pee in the toilet 100% of the time. He can go by himself as well and will come get mom and dad after to celebrate. He refuses to wear underwear so potty training is halted.

Eating:

His diet has improved DRASTICALLY. Last night I watched my picky eater chow down on raspbarries. I can usually get a few bites of dinner down him as well. Still no veggies though. He will find the smallest piece of corn or pea in anything. He uses a sippy cup 100% of the time. He has no desire to use a glass nor will he use any sippy cup style besides his own. He will use a spoon for yogurt but almost everything else is with his fingers. His fine motor is really, really bad.

Autism’s:

Cooper doesn’t have a lot of autistic traits. At least I don’t think he does. When he is really excited he will flap. It’s loud for sure. And very noticeable. He is a runner and a thrower. When I hold him he will pull my hair and eat it. Yes, you read that right. He will pull out 1 hair and suck on it. It’s odd.

I remember someone once asked me if he was low functioning or high functioning. I remember saying…well, he’s eating the snow off your boots as you are talking to me so I’m going to go ahead and say low functioning?

I hate that damn question anyways. He still puts a lot of things in his mouth. He tears apart beds at a rabid speed. Bedding and mattresses come off constantly at my house. I hate that one. Ready for that to go away.

What else. I still have to cut his hair with a clippers. He can’t handle going to a salon or sitting in a chair for that period of time.

He is extremely affectionate to me. I get lots and lots of kisses on my cheeks from him. He loves being tickled and played with and requests it often.

Transitioning away from activities he likes has really improved for him. He used to REALLY struggle with giving up the iPad or shutting off a movie. He is way better now. I give complete credit to his lovely teachers for that. We count down from five and use lots of prompts when activities are about to end.

Me:

I am doing OK. Cooper is having his 4th surgery in a few weeks. They are going to put in a new set of tubes in his ears and remove his adenoids. I’ve heard it’s a painful recovery. I am very much dreading that. I am also having lots of stress over sending him to kindergarten. I don’t think it’s the right path for him. I still have weekly highs and lows over the things that autism has took from me. It used to be daily. Now it is weekly. Cooper is the happiest kid I know and I absolutely love that about him. He is technically my easy kid. Sawyer is my challenger. Sawyer is curious and creative and never stops talking or moving. He has huge highs and lows whereas Cooper is pretty much always happy like his mom.

My goals are to get him potty trained and maybe doing ‘some’ things for himself. Those are both pretty big stretches right now. They are going to happen though. I will get this kid potty trained.

I also want to start thinking about the future. I am seeing all these stories in the news of autistic kids working and graduating and making huge differences in the world. I have prevented my brain from going there for 5 years. The only future thought I have about Cooper is that he will live with me forever. I will take care of him until I die and then someone else will. I need to stop that. It’s a form of negativity. I need to give him a future. I need to allow myself to dream that he will graduate from high school…like REALLY graduate. And that he will actually KNOW that he is graduating. I need to believe he will thrive.

My goal is to allow myself to hope and think about his future. My goal is to not give up on a five year old.

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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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5 Comments

  1. kim on February 24, 2016 at 10:01 pm

    Landon eats my hair sometimes too.. yuck. I give him a chewy instead !! loved the update!



  2. euphoriciraqisinglemom on February 24, 2016 at 10:51 pm

    Have you ever tried pecs?



  3. euphoriciraqisinglemom on February 24, 2016 at 10:53 pm

    And if he’s good at technology maybe you should ask the school to provide him with an AAC device. My son who is completely non verbal uses a device to tell us his needs and wants and it works wonders!



  4. Trish on March 1, 2016 at 12:48 am

    I can’t believe how similar Cooper sounds to my son! My Noah turned 4 in December. I refer to him as non verbal, but I guess that’s not completely accurate. He sings bits of nursery rhymes and counts every now and then. Not with us, or upon request- just to himself. If he’s hungry or in pain, or anything I have no way of knowing. He just cries. Sometimes I know why and sometimes I don’t. Sometimes I feel like not much has changed since he was a newborn. Except now he’s 39lbs heavier and walks. I’m sorry if that sounds horrible! It’s an honest thought that I’ve had and would never say to anyone IRL.
    He’s also a very picky eater, although his eating improved some over the summer. He’ll eat microwaveable breakfast sandwiches…actual protein! Prior to this summer, he hadn’t had meat since he was 18 months old!
    He also has a little brother that he’s played with maybe 4 times. They are 23 months apart. That’s hard. He has no interest in kids or toys either.
    It’s hard to stay positive and picture a bright future for them like you said. I try to visualize every night before I go to sleep. I see Noah’s little face with words pouring out of his mouth. I see him playing with his brother, and telling me that he loves me. No verbal stimming; just words. Then, morning happens…He’s crying because he’s hungry, but won’t eat. He’s running back and forth screeching and laughing for no apparent reason. Every special needs child that i encounter seems to be doing better; improving faster. I find myself right back in negative land.
    Anyway, sorry for the long response. I just wanted you to know that I understand! I love my son and would do anything for him, but the struggle is real!
    Trish



    • Avatar photo findingcoopersvoice on May 19, 2016 at 6:58 pm

      Just saw this. Sorry for the delay. First, HUGS! I get it. And I understand. The struggle is totally real. Cooper is 50 pounds and I still have to carry him. Often I think of him as a giant newborn. I get it friend. Wow are boys sound similiar. I am here for you if you ever need me. Email me anytime. swensonkate@yahoo.com