ST. CHARLES, Mo. — During a lull in her overnight nursing shift last month, Donna Herter of St. Charles made a Facebook post about her 24-year-old son, Christian Bowers, who has Down syndrome.
“I’ll pay you to be my son’s friend,” it read. “All you have to do is sit with him and play video games in his room.”
She left work, got home and went to bed.
When she woke up and checked her phone, she thought something was broken. Tens of thousands of people had shared her post. Her inbox was flooded.
“It was mind-blowing,” Herter said.
Life has improved for people with intellectual and developmental disabilities over the past few decades: Children who were once institutionalized at birth now attend classes with their nondisabled peers. Cringe-inducing labels have mostly disappeared. And medical advancements have mitigated the health conditions that often accompany Down syndrome.
But one of the most basic of human needs — enduring social connections — remains elusive for many people with developmental delays.
“Helping people with disabilities make friends is one of the most important and difficult things we do,” said Wendy Sullivan, CEO of Easterseals Midwest in Maryland Heights.
Life expectancy for those with Down syndrome has more than doubled — to 60 — since the 1980s, prompting service agencies to expand programming into adulthood. But across the board, barriers to engagement remain high.
Demand for day programs often exceeds available spots. Nonprofits are grappling with longstanding problems exacerbated by the pandemic: increased costs, reduced government funding and dwindling pools of volunteers.
Few people with Down syndrome drive, and not everyone can navigate public transportation. The unwritten rules of casual interactions can be challenging.
“It’s a huge concern for families as they approach their child’s last day of school,” said Erin Suelmann, executive director of the Down Syndrome Association of Greater St. Louis in Brentwood. “Families try to piece together a meaningful life for their loved ones.”
School is the only place 12-year-old Makayla West of Overland interacts with her peers. The seventh grader, who has Down syndrome, has a difficult time with conversational back-and-forth and the physical demands of popular extracurriculars, such as parties at a trampoline park.
Her mother, Amy West, is already thinking about what will happen when Makayla turns 18. For now, West would be delighted to see her daughter invited to a sleepover.
“She has no friends outside of school,” West said.
After graduation, the world shrinks for many people with intellectual disabilities. Some go on to college or career-readiness programs, but many do not.
Bowers, Herter’s son, doesn’t read or write, and his math skills are rudimentary — putting a lot of jobs out of reach.
Homecoming king
Herter has been advocating for her son since he was a baby. She became a single mother at 18, and the diagnosis after he was born was a jolt.
“I didn’t know anyone who had Down syndrome,” she said. “I sat in my bedroom for a month.”
But her baby needed her. She started researching, found tutors and learned sign language to facilitate communication. For the first three years of his life, Bowers saw five therapists, five days a week.
When he was ready for kindergarten, Herter moved away from her hometown of Warrenton to Jefferson City because she had heard its school district was better equipped to support kids like her son.
Bowers thrived in school. He made friends and competed as a Special Olympian in baseball, bowling and basketball — “my three favorite sports,” he said.
He came into his own during his senior year, when he was elected homecoming king. The day he was handed his diploma was one of Herter’s best as a mother.
“When they tell you your son has Down syndrome, all this stuff goes through your mind,” she said. “He’ll never get married, move out, have kids. Graduating high school was a huge thing.”
Soon after, the family moved to St. Charles. Bowers got involved with activities through the Down Syndrome Association and worked a part-time job making snack boxes for local businesses.
“He absolutely loved it,” Herter said.
The pandemic put an end to that. Virtual recreation during that time was also mostly inaccessible to Bowers. He doesn’t do social media or have a long attention span for Zooms. He loves video games, but playing online overwhelms him.
‘One of the guys’
Bowers has always known how to work a room, even as a kid. He gives out high-fives and handshakes like they are business cards. At Pizza Ranch, his favorite restaurant, the servers know him by name. When his mom goes to Walmart, the shopping trip becomes an extended meet-and-greet.
He is quick to laugh at his own jokes and appreciates the shock value of a well-placed curse word.
“I don’t know what is going to come out of his mouth,” said his sister, Kylee Bowers.
They visit arcades and watch movies together. Bowers has a knack for cheering her up.
But a few months ago, Herter noticed loneliness creeping into Bowers’ life. Whenever he would run errands with his mom, he’d invite people to their house.
“Everybody he asks says, ‘Someday, someday,’” said Herter.
Each morning, Bowers would interrogate his family on whether someone was coming over. It was heartbreaking for his mom.
Bowers loves mixing and mingling at Down Syndrome Association events — he scrapped his usual overalls in favor of a suit with a matching blue tie and pocket square for a dance last month — but he craved an everyday kind of friend. Someone he could sit on the couch and eat chips with. Someone to trash talk during “Call of Duty” or “Tomb Raider.” Someone to rely on, to whom he wasn’t related.
“He just wants to feel like one of the guys,” Herter said.
If a friend would bring him joy, she wanted to make it happen.
‘We should do better’
When Herter first saw the crush of reactions to her Facebook post, she almost took it down.
“I didn’t mean to invite the world into my living room,” she said.
But her candor had hit a nerve with other parents whose children were experiencing the same struggles, and she wanted them to feel heard, too.
“We should do better,” a woman from Louisiana wrote.
“It’s such a heavy burden,” commented a mother from North Carolina.
By the next day, almost 60,000 people had shared Herter’s plea. Marines from Fort Leonard Wood invited Bowers to the base to go bowling. He got offers for Facetime dates and a visit from Glamorous Gertie, a pink-and-black pig. Bowers’ story was told by local television stations, on the “Today” show and in an Icelandic newspaper.
Most importantly, the family has connected to three men, around Bowers’ age, who have scheduled regular meetups with him.
Before James Hastings of Troy, Missouri, became a police officer, he had a job teaching life skills to people with disabilities. And he’s a gamer himself. He messaged Herter and visited her son for the first time last month.
They got to know each other and played “Resident Evil.” It went so well, Hastings brought his motorcycle club to meet Bowers the following week.
“He just has a big heart,” Hastings said.
Bowers has been eating up the outpouring of attention. When the hubbub dies down, his mom’s hope is that he will have two or three committed companions. She wants that for other people with disabilities, too.
“It just takes an hour,” said Herter. “One hour would change that child’s or adult’s world.”
____
