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Why My Son With Down Syndrome Deserves 'Dignity of Risk'

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We are calling this the summer of independence! My son, who has Down syndrome and is 16 years old, has made huge gains in maturity and independence this past school year while being fully included. We wanted to bring those successes into the real world and try them out.

We decided at the beginning of the summer that every place we went, we would give options and ideas for my son to try new things and gain a feeling of success.

It started at the Residence Inn in Norwalk, Connecticut, where we were vacationing. Upon checking in, we looked around the lobby and where the breakfast buffet would be served the following morning. We snuck a peek behind the closed doors, were able to see what it looked like and give our son an idea of the layout of the area.

The next morning he took the elevator down by himself, got his breakfast, brought it back up on the elevator, and used his room key to enter the room by himself. Success! He was so proud of himself. He went down two more times that same morning, and did the same for the following two mornings — building up confidence and success.

Next came the National Down syndrome Conference in Pittsburgh, Pennsylvania. This hotel was much bigger and much busier. My son was able to go up in the elevator to our room from the lobby, by himself. After these successful trips within the hotel, we extended the travel over to the convention center. He went down the elevators from the convention center area, across the hotel sky bridge and up to the room. He made it just fine.

Then, unexpectedly, the night of the dance he requested to go back to the room by himself.

This was much more complicated. He needed to walk down to the escalators, go up the escalator, across the convention center sky bridge to the elevators, down the elevator, go across the hotel sky bridge to the hotel and then take the elevator up to our room.

Complicated, right? I had to think in my own head where to go and how to explain it to him. At first I said no, he’d have to wait for me. He got impatient. He wanted to try. He thought he could do it.

See, there’s this thing called, “dignity of risk.”

Dignity of risk is defined as: the idea that self-determination and the right to take reasonable risks are essential for dignity and self-esteem.

I was so nervous. But I wanted him to try. So I let him go.

He called within 10 minutes. I could hear disappointment in his voice. He was lost. I dashed over to the escalator and took it up one level. I assumed he had made a turn in the wrong direction after getting off the escalator. I couldn’t see him anywhere.

I began to panic. I told him to look around and read the signs he could see and to look for familiar things and I would head towards him. Then I tried to call my husband to see if he could utilize the Life360 app we had on our phones — of course he didn’t answer! As I got to the third-floor I couldn’t see him and no one was around. I became even more panicked. Because I didn’t see him, I went back down to the second floor, thinking he had missed the escalators entirely.

My son called again. He seemed calm, but just mad he couldn’t find the elevator. I asked him to take pictures of signs he could see, and send them to me.

Because we weren’t on Wi-Fi we couldn’t FaceTime each other. I still had not been able to confirm which direction he had taken or what floor he was on. I kept him on the phone as I asked him again to look around and give me hints of where he was.

My friend Nancy found him and called, “I have your boy right here with me.”

I breathed a huge sigh of relief. After confirming they were on the third floor I raced back up the escalator, went across the convention center sky bridge, turned the corner and paused as I walked into the center area. This area looked so unfamiliar, which was completely surprising, because it had been packed with people for the past two days. But it was now suddenly vacant, without people and looked completely different.

I knew immediately why my son got lost, the place looked so different without the exhibitors. If he had taken six more steps he would have seen the elevator and been perfectly fine.

As we all took the elevator down and walked across the hotel sky bridge, I paused with Nancy. I waved to my son and said, “I’ll see you up in the room.” My friend wondered if it was the best idea as he had just gotten lost. However, I knew he needed to do this part by himself — he needed to do it.

My son needs to practice the skills he has learned.

For us parents of kids with intellectual disabilities, it can be tough to teach independence. It was can be scary. But with risk, comes reward. For us, the reward is independence. It is confidence. It is successes that can be built upon.

I may have more grey hair this week, but my heart grew bigger with his success and confidence.

Originally published: August 6, 2019
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