What Would Cooper Want?

We met with Cooper’s social worker yesterday for another 6-month evaluation. If you follow our journey, you are probably noticing the uptick in medical appointments and evaluations. It seems to always work like that in our world. It is all or nothing. We will have a few quiet months and then boom. It feels like every day there is something.

Evaluations are inevitable when you have a child with needs. We meet every three months for one area, every six months for another and bigger, more meaningful evaluations are yearly.

I’m going to be honest. I’m tired of evaluations. I’m tired of talking about what my son can and can’t do. In a way I feel like it prevents us from just enjoying and loving the kid we have. And it points out how challenging autism can be. Like, I live it every day, do we really need to talk about it?

But this mama also recognizes their importance. We also love his team. The people we have in place genuinely care about Cooper and our family. It makes a huge difference. He is not a number. He is a person. And we have reached the point where if Jamie and I ask for help, they know we truly need it. Asking for help is not in our nature.

We also realize that we will be doing evaluations for the rest of Cooper’s life. It’s inevitable. It’s our life.

Everything in the autism world goes off of charts, scales, progress, regression and ultimately percentages. We live in a world of ‘moderately, severe and very severe.’ Has he improved, stayed the same or gotten worse? Check the box. Pick one of these ‘black and white’ answers to describe your complex kid.

We started off the conversation with an excellent question. One that is often forgotten in evaluations.

‘If Cooper could tell us, what would he tell us he needs?

Jamie and I looked at each other. Paused. And both immediately said, ‘comfort.’ Cooper loves being home, with his family, with his things. He loves knowing what is expected of him. He loves attention. He loves WiFi. He loves having his food readily available. Being cared for. Being loved.

‘Now as his parents, what do you think he needs?’

He needs to be safe. He needs to be loved. Challenged. He needs to have his supports in place.

We went on to the evaluation. It’s the same questions on every evaluation. No surprises. Nothing new.

We commented on a decline in physical aggression. YAY.

We commented on a rise in verbal aggression. Which may sound funny since he is nonverbal. Well friends, Cooper has turned into a yeller. Which I will secretly tell you he probably gets from his mother. When he gets mad he sure can lay into a person. He is very loud. And I mean, very, very loud.

We switched self-care from moderate needs to severe needs. We are noticing that one a lot lately. We commented on the isolation. His safety needs. And went into detail about his obsessive behaviors. We always say them with a smile. Photos, chairs, bathrooms, beds, wallets. I make sure though to be very serious about how they impact our lives.

If I can give you one piece of advice parents, and only one, DO NOT sugar coat your life in an evaluation. When Cooper was younger I used too. I thought I was betraying my son if I said the hard parts out loud. I thought I was sounding negative or even weak. And maybe I was a little scared to be truly honest.

You need to speak up. You need to be honest. Trust me. You can’t get help if no one knows.

We answered every question. We live in a world of ‘moderate, severe, very severe.’ A world I never knew existed. I can’t think of a time I’ve ever been asked those questions about my other son.

All the while, our little ray of sunshine is dancing around with his Kindle in hand. He is wearing red wool pajama pants with a multi colored swimsuit and a bright blue shirt. He is demanding pictures. He is banging on the locked basement door. He is almost like a blur. A blur of sound. He pauses for a minute and uses his talker to say, ‘I want birthday, balloons, party, present, cake.’

That there friends is communication. Communication we didn’t have a year ago.

Try not to smile when a kid asks you for that.

And then it was done. We have another six months until we have to do it again. Cooper will be eight.

Apparently a lot of things change at age 8 in the world of evaluations. Lack of self care matters more for one. What a weird thing to think about. We get more help if our son doesn’t have self care by 8. Is that a good thing or a bad thing? Both I guess.

After the visit, Cooper and I had a few quiet minutes to sit on the porch together. I took a deep breath. The evaluations and appointments are finally over. It’s been a long couple of weeks. Cooper still isn’t back to his ‘normal’ self either after last weekend. His stims are high. He’s more anxious than usual. But, he’s getting closer. We are working through it.

As I studied him he moved from my lap, to the chair, to the porch, to the driveway, to the road. Every minute he’d pick up his treasures, blanket and Kindle in a dramatic fashion and move them to the next spot. Each time, I moved with him.

I watched him dance and smile. He pointed to an airplane. He laughed at Barney singing. He picked up a piece of mud and grinned at me as he popped it in his mouth. He leaned in for a hug. He blew a raspberry on my belly. He pointed to his foot and said ‘ow.’

No one can make me smile like this child. No one.

He is my world. He is my everything.

I don’t know if I will ever get to a place where the evaluations don’t wear me down. And in a way, I almost hope I don’t. I feel everything that is said about Cooper. I feel every test. Every evaluation. Every diagnosis. Every note in a case file. When you love someone as much as I love this child how could you not feel it. I don’t ever want to get numb to his progress.

We are going to get back to living now. Back to celebrating the kid that we have. The one who walked to the park yesterday, saw kids playing in a sprinkler and ran over and joined them. For 15 minutes he was one of the kids laughing and running. He wasn’t the autistic kid. Or the nonverbal kid. He was just a kid. And I was the mom watching.

As parents we need those moments. We need to get out of the world of labels and evaluations. And reading about our kids on paper. We need to just be parents once in a while too.

I don’t care what some report says about my child. Because I’m sure it isn’t pretty. I’m sure it paints a very dark picture. A bleak future.

But, if you spend five minutes with him, you will be captivated, mesmerized and fascinated. You will see beauty and joy in a whole new form. That’s severe autism to me.

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 our journey. You can also follow us on Facebook and subscribe to our newsletter.

Interested in writing for Finding Cooper’s Voice? LEARN MORE