Good to Know: When your child with Down syndrome is 59 'going on 70'

Tom and Rosemary Ryan’s story parallels the story of Down syndrome these past 59 years.

Not only has the couple lived the joy, challenge and learning curve that accompanies raising a child with special needs, they’ve dedicated their lives to pioneering change in governmental support, educational opportunities and societal views.

“A lot has changed over the years,” Rosemary said. “We’ve come a long, long way.”

Like many parents of special needs children, love thrust them into advocacy. When there was no preschool for their son, Rosemary started one. When the concept of housing adults with Down syndrome in group homes instead of institutions was proposed, they jumped on board — landing smack in the center of a national debate and garnering the attention of ABC-TV’s “Nightline.”

And, now, as their oldest son endures perhaps the cruelest of characteristics often associated with his condition — accelerated aging — the Ryans are again at the forefront of the discussion.

Kevin Ryan is 59, but a checkup last spring revealed “he’s more like going on 70,” Rosemary said. “He’s gonna pass us up.”

Now in their 80s, the Ryans, who live at Smith Crossing retirement community in Orland Park, Illinois, are simultaneously discussing end-of-life care for themselves and their son.

When Kevin Ryan was born Aug. 4, 1959, Tom and Rosemary felt the way many parents of newborns with special needs felt back then — alone. The support and advice that today are showered upon parents of babies born with Down syndrome were nonexistent, Rosemary said.

“They called it ‘Mongolism’ back then,” she said. There were no prenatal tests to predict it, nor any way to prepare for it, she said.

The “new” thinking at the time was that the couple should take their newborn home, she said. And that’s where the advice ended. Rosemary found only one very dated guidebook that she said was so negative, “I couldn’t get past page three.”

The Ryans went on to have three more children, with their second son quickly passing his older brother developmentally. Rosemary gave up her nursing career to stay home with the children.

Testing had revealed that Kevin was on the border of EMH (educable mentally handicapped) and TMH (trainable mentally handicapped), she said.

Those terms have fallen from the lexicon, along with “Mongolism,” but Kevin’s score meant, Rosemary said, that he’d struggle in an academic program, but likely excel in a training setting. They chose the latter.

“Back in 1962,” she said, “public schools had EMH but no TMH.”

The Ryans were living in Jacksonville, Illinois, and Rosemary and another mom started a school in a nearby church. They set up an advisory board with professionals and townspeople, and hired teachers.

Kevin attended for a year and a half, until Tom’s job was transferred to the south suburbs.

While Rosemary had been organizing a school in central Illinois, other parents were doing the same in Chicago Heights. In 1965, after the Ryans moved to Park Forest, Kevin began at privately run Happy Day School.

Ten years later, Public Law 94-142 mandated public school be available to all kids ages 3 to 21 (later extended to age 22), and Kevin transferred to SPEED Development Center in Park Forest. Kevin continued there until he turned 21 and returned to Happy Day for adult workshop.

The end of public school life often is a time of great concern and confusion for parents of children with special needs, Tom said, particularly if they haven’t planned ahead.

Kevin continued attending workshop at Happy Day and living with his parents until 1995.

Down syndrome is the most commonly occurring genetic condition, said Linda Smarto, director of programs and advocacy at the National Association for Down Syndrome in Chicago.

About 6,000 babies with the condition are born each year in the United States, Smarto said. 

While individuals with the condition develop more slowly at the beginning of life, the end of life seems to rush at them. The phenomenon can be heartbreaking for loved ones already wrestling with end-of-life care decisions. What to do with aging children who have Down syndrome is a huge concern, Smarto said, especially if the individual has medical issues. If a family member isn’t available to assist, an individual may be placed in a state-run home.

Smarto said much of the evolution of Down syndrome inclusion is owed to parents like the Ryans, who’ve helped usher in change by volunteering, serving on boards and doing the work.

In the early 1990s, a group came to Happy Day, now New Star Services, and told parents they were going to start building group homes in neighborhoods, Tom recalled. It was a new concept sweeping the country, he said, and they had found a lot on Broadway in Chicago Heights.

The Ryans were among several parents who signed on. At the time, Kevin was 31 and eager to get out on his own, Rosemary said, because his younger siblings had flown the coop.

But Chicago Heights fought the idea, becoming “the test case for the nation,” she said.

The battle introduced many to the acronym NIMBY (not in my backyard) and made national headlines. A photographer from U.S. News and World Report visited the Ryans, and a picture of Kevin ended up on “Nightline,” Rosemary said.

The city lost and had to pay the agency and the prospective residents, she said.

In 2012, fearing their son might encounter early aging issues, the Ryans moved Kevin into Good Shepherd Manor in Momence. Good Shepherd, Tom said, is the closest thing to a forever home, serving 125 adults, many of them aged.

“They’re committed to lifetime care, no matter what happens,” Rosemary said. Now, she said, Kevin’s lifestyle mimics that of his parents. “We have every level of care we’re ever gonna need here [at Smith Crossing], and so does he there,” she said.

The Ryans’ other children are scattered from Maine to Hawaii, with Kevin’s closest sibling 1,000 miles away. “If Kevin outlives us," Rosemary said, "we’d like him to stay at Good Shepherd because that’s what he’s familiar with.”