Amazing Things

One man’s journey with Down syndrome shows how far we’ve come in 30 years.

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Richard and Didi Dobbs didn’t know much about Down syndrome when their nephew Sean was born with the condition in 1985.

The only thing they did know — and according to all of the information they could find on the condition — was that it was synonymous with “Mongolism.” Which, as you can imagine, was less than reassuring.

“It was the ’80s, and there was no Internet or anything,” Didi told Upworthy. “I knew the very little that people in the ’60s would know, which is that it was odd, or freaky, or scary.”
Before the ’80s, the average life expectancy for a person with Down syndrome was 28 years, and it was common for children born with the condition to be sent away and raised in institutions or group homes, segregated from educational opportunities and the public at large. In fact, up until 1984 — just a year before Sean was born — doctors were not legally required to give medically indicated treatment for life-threatening conditions to infants with disabilities.

 

So the Dobbses tried to help their family, and others like them, the only way that they knew how: by turning the cameras on.

When Sean was 2 years old, they began to film his life with the ultimate goal of turning the footage into an informational video to help other families treading the then-uncharted waters of raising a child with Down syndrome. At the time, no such movies existed, at least not that they could find.

Over the years, they documented all the major milestones in Sean’s life. They filmed his speech and occupational therapy classes as he learned to walk and talk. When he took a liking to swimming, they brought their camera along to his high school swim meets. They followed him to the prom and to his high school graduation, when he became the first special needs student in the 2,000-person school to graduate on time.

 

Their archival footage was interesting to family and friends, but it wasn’t really a story … until they learned that Sean was going to compete in the National Special Olympics Triathlon in 2014.

Suddenly, the film that had been nearly 30 years in the making had a whole new shape as well as a name: “Sean So Far.”

The Dobbses began to chronicle Sean’s preparation alongside his triathlon partner, Troy — the only two athletes from Connecticut to compete in the national games that year. Their friendship would go on to become one of the lynchpins of the film.

 

but the film took another unexpected turn when Sean was rushed into emergency spinal surgery six months before his big race.

During an obligatory physical, doctors discovered an atlantoaxial instability in Sean’s neck. This is a fairly common congenital complication in people with Down syndrome, although that doesn’t make it any less serious.

Sean ended up missing eight weeks of training that winter while he recovered from the surgery. But as soon as the neck brace was gone and the doctors gave the word, he was right back at it, determined to get himself back into shape before the race.

Sean ended up taking home the bronze medal at the National Special Olympics that year, but his story didn’t stop there.

Just two weeks after the race, Sean and Troy were invited to attend a black-tie dinner at the White House on behalf of the Special Olympics International Committee.

Sean was even given the opportunity to deliver a speech to President Barack Obama and his family. “His mouth had no muscle tone when he was a baby — we have footage of that — so this speech was a big deal!” Didi Dobbs said.

 

The Dobbses have seen a lot of changes in the 30 years that they’ve been working on “Sean So Far” — both in Sean himself and in the way the world looks at Down syndrome.

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About Barry G. Morris

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