A wise teenager once said, “I think in order to motivate people, you have to kind of know how they work, and it’s different for every person.”
Krista Fincke of Tarpon Springs, Fla., has experience with not wanting to do physical therapy (PT), take her medications or wear her ankle-foot orthotics (AFOs).
A bright 15-year-old with Charcot-Marie-Tooth disease (CMT), Krista offers Quest readers some suggestions for motivating your children to keep up their health care routines. Other tips are provided by Anne Connolly, a pediatric neurologist at Washington University in St. Louis, and parents of young children with neuromuscular diseases.
If your child takes his or her medication every morning after breakfast, it becomes a comfortable routine. Skipping a day sometimes makes it harder to get back into the habit.
Consistent stretching, once or twice a day, is the key to getting your child to like being stretched, says Connolly, an MDA research grantee who sees patients at MDA’s clinic at the university. If limbs are stretched intermittently, it’s more painful because the tendons lose their elasticity, and you’re fighting against resistance, she adds.
“The nighttime AFOs (night splints) give 10 hours of ‘free stretch’ time while sleeping, and mean that the ankles will stay looser longer,” Connolly says. “Without stretching, the stronger muscle group ‘wins’ and the contracture will develop.”
Most children don’t mind wearing night splints because they help them function better. The main complaint is that they’re big and bulky and make it difficult to change positions in bed. For these reasons, Connolly recommends having children begin wearing night splints at an early age so they’ll get used to the way they feel.
“Some parents say that they give their kids a couple of nights off a week,” Connolly says. “Usually that’s not a great idea, because then they’re much more likely to compare that night with the next night. It’s better to just wear them all the time.”
It’s much easier to get your child to comply with a medical regimen when you make the activity pleasant. Parents can be pretty creative in distracting their children from monotonous tasks such as stretching and other PT, Connolly says.
|Rock Cottone stretches the leg muscles of his son, Torre, while mom Molly reads a story aloud.|
R. Rocco “Rock” Cottone, a professor of psychology at the University of Missouri in St. Louis and the father of Torre, a 9-year-old with Duchenne muscular dystrophy (DMD), says he and his wife, Molly, take turns with Torre’s care and work as a team whenever possible. They try to stretch his heel cords and hip flexor muscles in the mornings and evenings.
“We try to make his stretching and the time we put on his AFOs ‘fun time’ — we stretch him at night while we watch TV or one of us reads stories,” Cottone says. “It’s best not to make stretching the focus, so that it’s associated with some fun family time.”
This “fun time,” along with a brief explanation of why stretching and wearing his AFOs are important, keeps Torre from complaining about his nightly routine, as long as the stretching doesn’t get too aggressive.
|Occupational therapist Michelle Bragdon instructs Joseph Miller on Nomoe in the Carriage Barn Equestrian Center’s therapeutic riding program.|
Dena Miller of Haverhill, Mass., says her son, Joseph, 3, loves going to PT at his preschool twice a week.
In the school’s gym, Joseph, who has spinal muscular atrophy (SMA) and uses a power wheelchair, enjoys playing in the large ball pit and the wheelchair-accessible playhouse. His physical therapist also uses balance boards and big exercise balls to help with motor skills, and has him play basketball and throw Beanie Babies to work on his arm strength.
In occupational therapy (OT), which he attends once a week at school, Joseph makes puzzles and plays with Play Doh while lying on the floor and propping himself on his elbows to strengthen his chest muscles.
Joseph also does hippotherapy (therapeutic horseback riding) and aqua therapy once a week.
His favorite parts of hippotherapy are “when the horse makes noises” and “when I get to say ‘walk on.’” He enjoys spending time at the barn, helping clean out the stalls and brush the horses.
In addition to daily stretching and using his Standing Dani, Joseph works each of his muscle groups with games and activities his mother has invented.
“If I want to work on his legs we’ll do something where he’s kneeling to play the game,” says Dena, who has a basic knowledge of PT and OT skills from earlier work with children with brain injuries. “Mostly all his toys that I’ve purchased have a therapeutic value.”
Joseph likes to play with his collection of rocks of different sizes and weights. Dena turns this hobby into exercise by arranging several storage buckets of different heights. He sorts his rocks and puts them in various buckets, working his arms.
Telling children why they need to do PT, stretch, wear AFOs or have surgery helps to motivate them, especially when parents let the child have a say in whether or not to proceed.
|Krista Fincke enjoys her sessions with her physical therapist, Nicole Baisley.|
When she was 12, Krista Fincke, now 15, stopped going to PT (for insurance reasons), but she also stopped doing her exercises at home.
Krista’s mother, Helene, wasn’t able to monitor Krista’s exercises because of her work schedule. It took a neurology appointment in October to motivate her to make some changes.
“What really worked best for us is to get a third party to express how critical treatment is,” Helene says. “I wanted the doctors to be very straight with Krista, and she needed tough love. They needed to stress how important physical therapy was for her so she could remain strong and mobile.”
Give your child a voice
Make sure your child is involved in the important decisions, Connolly says. She never recommends forcing a child to have surgery or do PT.
Torre Cottone, who’ll be attending fourth grade at St. Joseph School in Cottleville, Mo., recently had surgery on his heel cords and hip abductor muscles.
“The goal of the surgery is to give him the stability to walk with full leg braces, and he ultimately made the decision [to have it],” his mother, Molly, says. “We told him he didn’t have to do it, that it was totally up to him.”
The weight a family gives to the child’s opinion depends on the maturity of the child and the nature of the medical treatment. Parents should also be sure the child understands all aspects of the choice being made.
When asked how he felt about having the surgery, Torre responds, “Kind of excited.”
“So I can walk again.”
Agnes Jani Acsadi, a neuromuscular physician doing clinical and research studies at Wayne State University’s Detroit Medical Center, describes a possible approach to make children more willing to undergo a nerve conduction velocity (NCV) test, which tests nerve function and is sometimes used in diagnosing a neuromuscular disease. An NCV is uncomfortable, even painful, because electricity is sent through a patchlike electrode placed on the skin.
Acsadi finds that some children are more comfortable if they can participate in the testing.
“It takes the fear away if I tell them that they can do it to me, too, if they want, and look at the screen,” Acsadi says. “Older kids can compare what they see on the screen or just kind of have them see that this is something other people need done, and I don’t have any problem taking it on myself.”
Justin Wilton, 6, of Warren, Mich., was cautious of being hooked up to the big machine. Justin, who has CMT, wanted to operate the machine and opted to conduct the NCV on Acsadi after his own test.
Justin thinks “it’s cool” that he could do “the zapping test” on the doctor. Kids might also be reassured by acting out such tests with a stuffed animal or doll.
Keep it positive
To get your child to accept changes and new equipment, Molly Cottone recommends being excited about it yourself. She says that when parents dread getting a wheelchair, so does the child.
Torre loves his power chair because it gives him freedom.
“We’ve always been open with equipment when he needed it. We had it there for him, sometimes before he’s even needed it,” his mother says. “The chair was a big, exciting thing for him and we kept it very positive.”
A huge motivator for Krista Fincke was to find a physical therapist she liked.
Her current physical therapist “made it a lot more fun, and she has a more outgoing personality,” says Krista, a freshman at Eastlake High School.
“She’s a really happy person. Honestly, I think that if I didn’t do the exercises and she said, ‘So how have you been doing?’ and I say, ‘I didn’t do anything,’ she’d be so sad. I think I’d be sad with her. That kind of makes me do it, too.”
Her mother comments, “I think that physical therapy not only is good for her physically but psychologically, too, because she is very connected to her physical therapist and her physical therapist does give her positive feedback.”
“On some level, both the parent and the child have to be motivated [to do PT, stretch, diet, etc.], because if it’s only the child, it won’t work and if it’s only the parent who’s motivated, it also won’t work,” Connolly says.
It also helps children to know that they’re not alone and to learn from other children or adults who’ve been through or are go-ing through the same thing.
If your child needs spinal-fusion surgery, it may be helpful for him or her to talk to someone who’s had that surgery.
This works for painful tests, too.
Depending on the age of the child, incentives sometimes work as a motivator, if they’re appropriate. You don’t want to reward a child for taking prednisone, a yucky-tasting drug that generally causes weight gain, with a Twinkie.
Connolly suggests, “Maybe it means, ‘Listen, if you keep your weight at the same target weight, we’ll get to go to the zoo’ or something different or fun.”
With teenagers, it may be a different story.
Krista sums it up with a metaphor:
“Positive reinforcement is good, but that doesn’t really work on me too much, because I’m kind of a lazy person.
“If you come up to me and say, ‘Krista, if you vacuum for the week, I’ll give you $5 at the end of the week,’ I’ll say, ‘I’d rather watch TV than get $5.’ But if you say, ‘Vacuum or you’re not going anywhere this weekend,’ I’ll definitely vacuum for you.”