Early ageing in Down syndrome
An elderly couple is taking on the challenges of caring for their son, who 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 the world of 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 centre of a national debate and garnering the attention of ABC-TV’s Nightline with Ted Koppel.
And, now, as their oldest son endures perhaps the cruelest of characteristics often associated with his condition – accelerated ageing – 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.”
Raising a child with Down syndrome is “perpetual parenthood”, Rosemary said, “if you are committed to wanting the best for them.”
Now in their 80s, the Ryans, who live in a retirement community, are simultaneously discussing end-of-life care for themselves and for their son.
Into the light
When Kevin Ryan was born in 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 was nonexistent then, Rosemary said.
Three paediatricians examined Kevin and agreed he had the condition characterised by an extra chromosome.
“They called it ‘Mongolism’ back then,” 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 could find only one very dated guidebook at the library that she said was so negative, “I couldn’t get past page three.”
So she relied on her instincts and on training she’d received en route to becoming a paediatric nurse to get through the early years, she said.
“And we just kind of forged ahead,” she said.
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 and care for 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 what Kevin’s score meant, Rosemary said, was that he’d struggle in an academic programme, but likely excel in a training setting. They chose the latter.
“Back in 1962,” she said, “public schools had EMH but no TMH.”
Rosemary and another mother then decided to start a school in a nearby church. They set up an advisory board with a host of professionals and townspeople, and hired two teachers.
Kevin attended for a year and a half, until Tom, who had given up teaching high school to work at State Farm Insurance, was transferred to the south suburbs.
Changing laws and attitudes
While Rosemary had been organising a school, other parents were doing the same elsewhere.
In 1965, Kevin began at privately run Happy Day School.
Ten years later, Public Law 94-142 mandated that public school be available to all kids ages three to 21 (later extended to age 22), and Kevin transferred to Speed Development Centre. Speed, Tom said, “was the creme de la creme” and 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.
“Some people choose to have their adult kids just stay home,” Tom said, but that can lead to problems if the parents’ health begins to fail.
Kevin continued attending workng shop at Happy Day and living with his parents until 1995.
Down syndrome is the most com monly occurring genetic condition, said Linda Smarto, director of pro programmes and advocacy at the National Association for Down Syndrome (NADS). Approximately 6,000 babies with the condition are born each year in the United States, Smarto said.
That translates to one of every 730 live births, a number that seems to be on the rise, she said.
“When my daughter was born 24 years ago, the number was one in 1,200,” she said.
“Eighty-five percent of (these) chilyears dren are born to mums 35 and younger,” she said. “So it’s a great myth that (Down syndrome) only occurs to parents who are) only
While individuals with the condit tion develop more slowly at the begin ning of life, the end of life seems rush at them. Not everyone with Down syndrome is afflicted with pred, mature ageing, Smarto said but there does seem to be a precursor to that and Alzheimer’s disease.
“Down syndrome, (researchers) say, will find the cause for Alzheimer’s because (scientists are) really pushing to find some sort of a cure and learn why this is happening,” Smarto said.
The phenomenon can be heart breaking for loved ones already wres What tling with to do end-of-life with ageing care children who decisions. have Down syndrome is a huge con cern, Smarto said, especially if the individual has medical issues.
But, she added, it’s the same con cern for anyone with a disability. And it’s the same for elderly adults who don’t have a living child to help care for them, she said.
If a sibling or other family member isn’t available to assist, an individual may be placed in a state-run home.
“Our goal is to have our individuals either live independently or with a family member,” she said.
Smarto said much of the evolution of Down syndrome inclusion is owed to parents like the Ryans, mums and dads who’ve helped usher in change by volunteering, serving on boards