My son Cooper has Down syndrome. We received the diagnosis prenatally. We made the decision that he was our son and we wanted to give him a chance at life. The pregnancy went from being a time of joy to one of the most difficult periods of my life. The tests were unending… The potential health concerns stacked up.

I was in denial and held out hope that maybe all of the tests and ultrasounds were wrong. Maybe he’d come into the world just like any other kid. That didn’t happen. It was difficult to accept our new reality, but all of those feelings and scary thoughts dripped away over time. He’s now four years old, and he’s progressing.We try every day to give him what he needs. He is saying more words now but still doesn’t speak. He is not potty trained, but he’s doing better (most days). He knows his letters. He counts. He loves to sing.

In our eyes, he’s more ‘normal’ than not. But it really sucks that the minute someone looks at him and sees that he has Down syndrome, they put him in a certain box. Most people, and other kids, are kind to Cooper. Little girls love him. They are drawn to him and want to help him and play with him. But every now and then I see a person’s reaction to Cooper that hurts my feelings. A look of disgust on their face, and it makes me sad.

To me, raising awareness about Down syndrome is all about showing others that kids like Cooper will surprise you. They are more like you than you may think. Here’s an example of how Cooper has changed people’s perceptions…

My older, typical son was invited to a birthday party by a boy he attends karate with. The boy was turning nine, four years older than my son and the invitation said they were going to have a Game Truck and the pool would be open. I RSVP’d to the mom and asked if it would be okay if I also brought my younger son, Cooper, because my wife was out of town and I was flying solo. She asked how old Cooper was and I told her that he’s four. I didn’t mention that he had special needs or anything like that. Maybe I should have, but I didn’t really think about it.

Cooper does not look four. He’s small, and he doesn’t speak legibly, but he communicates in his own way. When we arrived, and the mom saw Cooper, her face looked annoyed, or scared or upset. I couldn’t tell, but she wasn’t happy. She didn’t say anything but she looked a bit shocked that I had shown up with a kid who has Down syndrome. The other kids, of course, could care less. I tried to make small talk with her and it wasn’t exactly easy. She was stand-offish or worried about making sure everything was set up and what not, I couldn’t really tell. So I took the boys inside the Game Truck and it was like entering Nirvana. Four big flat screens on one side of the truck and a row plush black couches on the other. The man operating the truck hooked us up with Nintendo Switch systems and we started playing Mario Kart. Cooper loved it. Max loved it. I have to admit, I loved it, too.

Cooper started to lose interest and wanted to get out of the truck after about an hour. So we stepped outside and there was the mom, nervous smile across her face.

“How old is he again?” she asked me.

“He just turned four,” I said. She nodded, a bit surprised, and invited us into the house for snacks. We abided by the sign at the door and removed our shoes. Her house was immaculate. I was a bit nervous because the house was filled with little, fragile nick-knacks, glass ornaments and candles. It kind of looked like Hobby Lobby in there. Cooper was excited by the food, arranged neatly on a table with a Mine Craft theme. He took a Mine Craft horse off the table and started playing with it roughly on the floor.

I tried to take it from him, fearing he might break it, but she said it was okay. Then their dog came over, a sweet, 14-year-old golden retriever. Cooper was in heaven. He LOVES dogs, and I could see the mom did too. The dog, Cooper and the mom, had a joint petting session, dog on its back to give full access to the belly. Cooper started warming her over. She made Cooper a plate of chicken nuggets and carrots. They fed the carrots to the dog. Cooper laughed each time the dog delicately took a carrot from his little hand. She laughed, too.

When the Game Truck took off, the big kids moved the party to the pool out back. I couldn’t really watch my older son and Cooper at the same time and the mom asked if she could take Cooper to the spa and put his feet in the water. I said sure. The two of them had a big splash and Cooper was soaked from head to toe. They were both laughing again. She then took Cooper inside and they played together for a while. When I went in a few minutes later, Cooper was entertaining all of the adults, making his funny faces, singing and just being his silly self.

Cooper had changed the dynamic just by being his true self. And I hope that after we left, the adults had a different perception of Down syndrome. I’m pretty sure they did. In fact, I think they were in love with Cooper, almost as much as the dog was.

One thing Cooper continually reminds me of is that you cannot put people in a box just by their appearance or disability. In that way, he has made me, and many others, a much better person.

On another note, we are attending the Down Syndrome Assoc of Central Florida’s Step Up for Down Syndrome walk. If you’d like to donate to our team, Cooper’s Troopers, that would be great! Be kind today…

One thought on “Down Syndrome Awareness

  1. Mireya says:

    Thanks for sharing this. I recall a conversation in a Life Skills class and a parent simply wanted more for her daughter. One of the aides said that her expectations were high. These kids are never going to do much seems to be the idea. I feel mom had a point. The world sees these kids as damaged but who knows what they are capable of. What’s the harm in trying. I am so glad their are mothers like you all in the world. He’s a cutie. Sometimes I feel like these kids are a reminder that we are one. I work with life skills kids and they remind me of love.

    Like

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