Quest shares lessons from parents who have successfully helped their children with muscle diseases grow into self-reliant adults
When Vance Taylor was a boy, he didn’t know any adult he could look to and say, “There’s somebody like me.”
His mother, Morena Noyes, recalls the first time she took Vance and his sister Kathy — both of whom have limb-girdle muscular dystrophy — to MDA summer camp.
“We were still in the parking lot, in our Astro van,” Noyes says. “Vance looked, and then he turned to his sister and said, ‘Kathy, there are people like you and me here!’ He was just beaming.”
|Vance Taylor today, with wife Casey and daughters Isabelle and Samantha.|
Today, Taylor, 33, is married and has two young daughters. A graduate of Brigham Young University, he holds a master’s degree in homeland security and is a partner at a top consulting firm in Washington, D.C. A full-time power chair user, he lives in the Virginia suburbs and commutes to work using public transportation for people with disabilities.
Taylor is a member of MDA’s National Task Force on Public Awareness and a frequent blogger and public speaker on disability issues. He’s also a regular visitor to MDA summer camp, where he speaks to campers about having dreams and setting goals.
Taylor has grown up to be the role model he never had. But as he makes clear, he didn’t get that way on his own.
He credits his mother with instilling in him the values and determination he needed to become an independent adult despite his disability.
“She’s a rock,” he says simply of Noyes, a Salvadoran immigrant and single parent whose husband abandoned her after learning that two of their three children had muscular dystrophy.
Although it wasn’t easy, Noyes — and many other parents of independent adults with neuromuscular diseases — did what they had to do to prepare their children to make it on their own.
In recognition of National Family Caregivers Month in November, Quest asked some of these parents for lessons to share with other parent-caregivers. Here is what they had to say.
When Vance and his sister were first diagnosed, Noyes says, the doctor told her they may not live long. He advised her to not worry about getting them through high school, let alone college.
“I thought, only God knows when and how,” Noyes says. “In the meantime, I’m going to do my part.”
Because she valued education, Noyes taught her children to be bilingual in Spanish and English, to work hard and do their best in school, and to understand from an early age that they were expected to go to college.
“I always asked them, “Which college do you want to attend? What do you want to study? You will not have your physical strength, so it’s extremely important to have mental strength.
“I told their teachers, ‘Don’t go easy on them. What I want you to do, if you’re giving 50 problems a month for homework, maybe give them 30. Because it’s difficult for them because of the writing. But other than that, they need to have a solid education.’”
|Ben Cumbo with parents Debi and Benjamin Cumbo during his term as MDA National Goodwill Ambassador in 1996-97.|
|Ben Cumbo today on his way to work.|
Benjamin and Debi Cumbo felt the same way. Their son Ben has Duchenne muscular dystrophy and has used a power chair since he was a teenager.
“It was always our philosophy that we wouldn’t coddle Ben,” Debi says. “That regardless of his condition, he still had to become a productive member of society.”
After high school, Ben attended St. Mary’s College of Maryland. He is now 24 and in graduate school in Middle Eastern studies at George Washington University in Washington, D.C. He’s learning Arabic and works part time at the State Department.
Although it’s completely understandable, some parents make the mistake of treating the child with the disability differently from the nondisabled children in the family.
“With muscular dystrophy, as with many congenital conditions, families are prone to feel sorry for the child and not give him [or her] the structure and discipline they normally would,” says Arden Peters, a retired psychologist who led MDA support groups in Wichita, Kan.
“One of the most common situations I ran across would be that the kid with MD was not expected to conform and obey the rules of the house and rules of the family,” leading to resentment from siblings, Peters says.
Failure to set limits also can be damaging for the child with the disability, says Al Freedman, a psychologist from West Chester, Penn., and father of a teen with type 1 spinal muscular atrophy.
“Your child already has one disability,” Freedman says. “If you don’t set limits, say no, give them responsibilities they can fulfill, and appropriate opportunities to be independent, you’ll inadvertently create the conditions for a second disability, an emotional or behavioral one.”
That was a mistake Kim and Randy Collins avoided when they chose to rear their first child, Whitney, who was born with congenital muscular dystrophy, “like any other child,” as Kim says.
“Whitney always had a pretty easygoing temperament,” Kim explains, “but if she was bad, I’d put her in timeout or give her a soft swat on the bottom” — the same punishment Whitney’s two nondisabled siblings would receive.
Whitney also was given chores to do, just like her siblings.
“We used charts and stickers to reinforce good behavior,” Kim says. “One of Whitney’s jobs was to help fold and put away the washed clothes. She’d roll down the hall on her little Fisher-Price scooter and drop off the clothes on each person’s bed.” (A play scooter was Whitney’s preferred mode of transportation until she started first grade, when she switched to a power scooter.)
|Whitney Collins at age 9, with her family on vacation in southern Indiana.|
|Whitney Collins Foote with her husband Dan Foote on their wedding day, Aug. 29, 2010.|
Whitney also was able to take her turn setting the table, because her thoughtful parents put glasses, plates and eating utensils in a drawer that was accessible to her.
The equal treatment apparently brought the Collins family closer together. Because money was tight, the younger children were not able to go on all the school trips or participate in all the activities they wanted to. But they never blamed Whitney or complained about the extra costs her condition imposed on the family.
Whitney, now 25, remains close to her siblings, but lives with her new husband and helps him run his business. She is a college graduate who owns and drives a specially equipped van.
Another trait successful parent-caregivers share is that they carefully chose the environments in which they placed their children, so they then could feel comfortable letting the child be independent.
Ben Cumbo’s parents, for example, decided to place him in a small, Catholic high school, where they knew he would receive the extra attention and support he needed.
And when it came time for Ben to go away to college, his parents encouraged him to go to St. Mary’s, another small school an hour’s drive from the family home that was not as large nor as distant as some of the other schools he was considering.
“Put [your child] in activities with able-bodied kids, but be aware of the surroundings,” Debi Cumbo advises. “Don’t put them in an environment where they will start to question themselves. You have to do your homework.”
When Brett Felter was growing up, his parents employed a similar strategy.
Brett, who has Becker muscular dystrophy, did not start using a power chair until his mid-20s, so laborious walking and frequent falls were regular occurrences for him. Nevertheless, he and his parental caregivers refused to let his condition prevent him from doing what he wanted.
“Brett went to overnight camp in grade school and band camp in high school,” Nancy Felter says. “We explained to the counselors that Brett had a mobility issue, and they were always wonderful.”
The Felters also encouraged Brett’s participation in their church’s youth choir. When the choir went on the road with a production of “Jesus Christ Superstar,” the Felters went along as chaperones.
|Brett Felter at age 14, with mother Nancy Felter in June 1996.|
|Brett Felter today.|
“We went to Florida, Chicago, Montreal and London,” Nancy Felter says. “I was the costume person, and my husband did the lights and sound.
“We were busy, so we weren’t hovering,” she adds. “We kept our distance, but we also kept an eye out. We were there if he needed us to haul a suitcase or whatever.”
Brett, who grew up in New Jersey and has two older sisters, has always been extremely independent. He attended college at Arizona State University in Tempe and law school at the University of Texas at Austin. He now lives on his own, works as an attorney in Baltimore and serves as a teen group leader for MDA.
Be it MDA camp, church choirs, school bands and sports, Boy Scouts or other groups, the four independent adults profiled in this article — Vance Taylor, Ben Cumbo, Whitney Collins Foote and Brett Felter — all actively participated in community organizations while growing up.
As youngsters, Vance Taylor and Ben Cumbo were involved with both MDA and Boy Scouts. Whitney Collins sang in a choir and played in a softball league. Brett Felter played marimba in the school band and performed lead roles with his church choir. Through these activities and others, all four made friends and developed both the assertiveness and the social skills they would need to face the world by themselves.
“When Whitney went off on her own [to college at Ball State], I knew she would be OK,” Kim Collins says. “She lined up all her caregivers on her own. She got out there and got on different committees to help make Ball State more accessible. She was a finalist for Homecoming Queen.”
Of course, what really made the difference for these four admirable young people was having a strong, close family. No matter what, when the going got tough, they knew they had parents in their corner they could call for advice and encouragement.
Vance Taylor recalls that in his darkest moments, when he was off at school by himself and feeling discouraged about his future, he would telephone his mother.
“Don’t worry, it will all work out,” Morena Noyes would say, after listening to Vance’s troubles.
“How do you know that?” Vance would ask.
“Because it has to,” she’d say.
And it has.