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Connections | Magazine

Preparing a child to be independent is ‘the best gift parents can give’

Letting go during COVID is hard, but my son with Down syndrome is ready to resume his life.

The writer’s son, Jon Derr (left), celebrates his birthday with his sister, Emily Derr, and his nephews.
The writer’s son, Jon Derr (left), celebrates his birthday with his sister, Emily Derr, and his nephews.Jo ann simons

Last month, my husband and I made the familiar drive to Cape Cod. But this time was different. The world had changed.

My son, Jon, 41, has Down syndrome, and for the past 18 years that he’s been on his own, we’ve been regularly making the trip to the Cape to visit him at his home. He lives alone and works two part-time jobs. But after COVID-19 struck, Jon decided that sheltering with family would reduce his loneliness and would be safer, given his underlying health conditions. Help from hired staff who assist him with his activities, work schedules, and overall health would have to be remote, and friends could not visit. But being with family — including his sister, brother-in-law, and two rambunctious nephews — was much more appealing.

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Jon took a leave of absence from his jobs and moved in with us in our North Shore home. But once the virus became better controlled in Massachusetts, Jon, my husband, and I made the difficult decision that it was time, yet again, to let Jon go.

We’ve gotten used to letting him go. We’ve been doing it since he was born. When we handed Jon off to the doctors at Boston Children’s Hospital at birth, we had to trust them with our firstborn. When he went off to day care at 12 weeks old, as the first infant with a disability to attend that program, and possibly the first in the country, we let him go and trusted others to care for him. Even when it meant that he was exposed to germs that required multiple hospitalizations, we knew that the developmental advantages far outweighed the risks to his health.

Each time we handed him back to those doctors for what would be three open heart surgeries, we knew it was right. When I dropped him off at preschool, I could hear his cries from outside as I dissolved into a puddle of tears, but I knew he would thrive.

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When he went to day camp as the only camper with an intellectual disability, I knew the experiences he would have there were important. Not only would he learn to swim, he would have to change his clothes and shoes multiple times a day, an important skill for a 3-year-old.

When we dropped him off, at 10, to spend an entire summer at an overnight camp, we knew that while Jon had done many brave things in his life, this was perhaps the bravest. We also knew we were preparing him to be independent from us, the best gift parents can give a child. The experience of knowing they can live without you.

By the time he went to a postsecondary program and college, we were pros at letting him go. And he was a confident young man. When he moved into his own home, our daily calls turned into occasional texts, and then weekly calls.

That all suddenly changed with the pandemic. Jon loved being home with us. The bonds with his 2- and 5-year-old nephews grew stronger as their mutual love of wrestling, video games, and playing filled their days. We felt Jon was safe from virus exposure and from loneliness. Jon’s friend of over 20 years called to say he’d be staying permanently with his family. But our son made a different decision.

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While his employers, Roche Bros. supermarket and CVS, were understanding and accommodating (we will forever be grateful), he was needed back. It was time to return to the Cape, his home, his life. After several months together, it was time to let Jon go once again.

We are all letting go of past routines, past lives, and past expectations. For Jon, it was going to be different, too. He wouldn’t be going back to evenings together with friends watching wrestling — he’d have to continue to use Zoom for those events. His Special Olympics soccer, basketball, and track seasons have been canceled, though golf is still on. Masks would have to be kept on for entire work shifts. Reservations would be necessary for the gym. On the advice of his medical team, he’d need to learn to use food delivery services, and it would no longer be safe to take public transportation to get around.

Instead of weekly calls, I have found myself once again checking in each day. As I do each time, I ended our call his first night back in the Cape with “I love you.” For the first time ever, he replied, “I love you more.”

I think he’ll be OK. Not so sure about me.

__________

Jo Ann Simons from Swampscott is a leader in disability services and CEO of Northeast Arc. Send comments to magazine@globe.com. E-mail your 650-word essay on a relationship to connections@globe.com. Please note: We do not respond to submissions we won’t pursue.

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