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When My Son With Down Syndrome Got Lost During His First Week at College

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My son got lost!

My son is a freshman at college this year. He got lost on night five of college. At 9:30 p.m. It was dark. Pitch black.

Everyone gets lost, right? But not everyone has Down syndrome and rocks an extra chromosome.

This was his very first Friday night on campus. There was a concert, and on the way home, he and his roommate got turned around in their directions.

We panicked! I thought my heart would jump out of my chest! I got dressed and was pacing back and forth. When they first called, they sounded calm, like they had it under control. They said he had been lost, but was now found.

I waited anxiously, staring at my phone. It took everything in me to be still and wait.

Then I got the second phone call that he was found, but couldn’t walk. He was lying in the dorm lobby, and they believed he had broken his ankle. They wanted to call an ambulance. I calmly said no ambulance, and that I would be there in 18 minutes.

I tried to drive calmly and not speed. My mind went in so many directions. Urgent care? Or emergency room? Which one is closest? Busiest? Thankfully, I didn’t hit a red light the entire way there. I tried to calm my heart, and took deep breath after deep breath. I did not know what I was going to find when I got there.

How could this have happened so quickly? It was only the first week of classes!

I parked and quickly jumped out of my car, and dashed inside. I was expecting him to still be lying on the floor in the lobby.
But he wasn’t there.

A roommate was there, waiting for me. He took me down to their dorm room. As I walked into the dorm room I took deep breaths, not sure what to expect.

There he was, lying propped up on his bed, with pillows behind his head. People all around him. People fussing over him.
People caring for him. He had ice on his feet. He had a huge glass of ice water. He was fine.

I could finally take a deep breath! He held his arms out for a hug. I was allowed a quick hug, but then he leaned around me, asking someone for his phone, and I was forgotten.

It seemed he had gotten heat exhaustion, as well as deep blisters on his feet, and then had a complete meltdown. He had gotten to the lobby and dramatically decided the cool floor was as far as he could go. It seemed that they had walked in the dark for almost 30 minutes, getting more and more lost. It was likely a combo of heat, not drinking water, walking so far, and fear that had kicked in for him.

My first instinct was to wrap him up and take him home immediately. But looking at all of the people around him, I realized that would not be the best thing for him.

We did not pull him out of college, though that was our first reaction. We did, however, regroup. We had to reprocess everything. We had to instill new rules and install Life360 with alerts. We needed more supports and resources put into place. We had to acknowledge there would be bumps in the road. We had to realize that this is complicated stuff.

Everyone gets lost. Everyone. This is life. This is going to happen. To ALL of us. Thankfully, he was in a safe environment for this to happen. Thankfully, he can grow from this “failure.” Thankfully, his staff understands there is “dignity of risk” in this learning lesson. We can all grow from this and do better next time.

Independence doesn’t happen overnight. Take one step at a time. Break it down. Build resources. Look for small wins. Look for small victories. Give grace. Keep your eyes on the goal — independence! And don’t let the little bumps become mountains.

Originally published: November 1, 2021
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