Skills for school and play
ln vol. 6, no. 5, we described occupational therapy for adults ("Skills for the Job of Living"). This story looks at OT for children, whose "jobs" are different and whose developing brains need special attention.
I think we were in a big denial," says Faith Varcadipane of Satellite Beach, Fla., when she talks about the first year of her son's life.
"I remember one phone call. My friend was saying that her son was rolling all across the floor, and her son was born after my son, a month later. I thought, 'Well, they all develop differently,' but I also thought, 'Hmm.' Little things like that would happen."
Noah was born in August 1996 to Faith and Mike Varcadipane, whose daughter, Nikki, then 4, had followed a faster course of development. "I'd always heard boys are slower," Faith says, and she didn't want to compare her two children.
The Varcadipanes' first pediatrician wasn't overly concerned — a common reaction among pediatricians, who are used to seeing children who grow out of problems. They consulted a second, however, who was alarmed. "I was stunned," Faith recalls. "I just sat there in amazement as he sent us off to the neurologist."
At the end of a long process of scans, blood work and other tests, the diagnosis became clear: a mitochondrial disorder. Mitochondria are microscopic energy factories housed inside the body's cells. Without normal mitochondrial function, a global "energy deficit" occurs in almost every organ, but muscle and brain, which both require a great deal of energy, are usually the hardest hit.
At 14 months, Noah couldn't pick up Cheerios on a tray in front of him. He not only wasn't crawling, but he didn't even seem to have, as Faith puts it, the "gumption" to crawl. There were problems with swallowing, with vision, with attention to tasks.
Noticing Noah's muscle weakness, Faith's mother suggested that her grandson's disorder might be covered by MDA. Finding that mitochondrial muscle disorders are indeed part of MDA's program, the Varcadipanes went to the recently opened MDA clinic at the Orlando Nemours Children's Clinic. "They sent everybody in to see Noah," Faith remembers. "We got to see their geneticist, their pulmonologist, their orthopedist. It was really good that way."
But anxiety was increasing all around. "Is it his brain? His central nervous system?" Faith asked the doctors. The answer wasn't exactly reassuring. "It's everything," she was told. Noah's brain, skeletal muscles, heart muscle and probably many other systems were affected by his mitochondrial disease.
"When you gain knowledge about the disease and you go to the doctor, your questions change," Faith says. Her initial questions were centered around whether Noah would live, but later the Varcadipanes became more concerned with how Noah's life would unfold. One physician told the couple, "Everything needs to pull together to help him be who he's going to be." They wondered just how that would happen, and at times Faith felt overwhelmed and bewildered.
As the serious nature of Noah's illness was gradually revealed, Faith says, "I felt that I was in a terrible nightmare and someone needed to wake me up."
|Occupational and physical therapists help a child obtain and use aids such as this walker of Noah Varcadipane's.|
Fortunately for the family, Noah's neurologist didn't confine his concerns to Noah's abnormal MRI scan and interesting biochemistry. "He made a phone call and requested that Noah get some early intervention," Faith recalls. "He was awesome."
Early intervention programs serve the needs of children with developmental problems from birth to age 3. They fall under the large umbrella of the IDEA, the Individuals with Disabilities Education Act, a federal program with state and local administration that guarantees a "free, appropriate public education" to every child in the United States.
Various therapies can be covered under early intervention programs, which, after age 3, generally become school-based (including at preschools).
"A lady came to my house," Faith recalls. "Her name was Althea, and she came over and set a big white folder on my table and talked. It was pretty confusing. I really didn't understand a single word she said."
Althea was a coordinator for the early intervention program in the Varcadipanes' area in central Florida. With time, Faith came to understand that Noah probably needed and was eligible for many kinds of therapy because of his developmental delays.
The family chose to start receiving therapy for Noah at the Hope Center in Rockledge, Fla. (Later, Noah's therapies would be moved to his home because of his fragile medical condition.)
Noah was a little more than a year old when he started receiving physical and speech therapies. It was Faith who asked about occupational therapy, noticing something interesting going on in a classroom where she was observing. "I said, 'Ooh, what is that over there? That person is an OT? What's OT?'" After an evaluation, occupational therapy was added to Noah's program.
Among the short-term goals for Noah at a year and 5 months were such skills as bringing a crayon to paper, reaching for a toy with certain shoulder and hand motions, playing purposefully with a toy, and using a pincer (thumb and index finger) grasp.
The idea of occupational therapy for a child usually elicits confusion or even ridicule. "What kind of occupation does a child have?" is a frequent response.
The answer, at least for the very young child, is play. "That's their occupation — play," says Jennifer Schwartz, Noah's occupational therapist. Schwartz works for the school system in Noah's area and has recently started seeing Noah, who's now 3.
"As the years go on, the occupation will change and it won't be play anymore. But that's my main job, to make sure I'm playing with the kids and getting involved in their environment," Schwartz says. She focuses her practice mostly on the preschool and kindergarten years, while other therapists who treat children may focus more on the later school years.
"With the physically challenged kids, because of their physical disability, they're not engaging the environment," Schwartz says. "They're not having the same experience that able-bodied children have because of their physical limitations. So right there they're going to be delayed — because they're not on the floor playing with the other kids. They're not running around at recess. That's something you can really see."
Schwartz likes to invent creative games that encourage children who may be timid about physical activities to use what skills they have and to feel different kinds of sensations. In one game, she puts shaving cream on a vertical mirror and asks the child to help her build snowmen or create a beach scene. "They're touching it. They're creating. In the meantime, they're working on a vertical surface, which is good for shoulder strength."
Another favorite activity is known as "hot dog." The child becomes the "meat" as he's rolled inside a mat. Schwartz then makes it a game, asking the children if they want ketchup, relish or mustard. "They're getting deep pressure in the mat. They're also in a position that feels really secure and safe because the mat is hugging them, surrounding them."
Self-care and school-related skills become more important later on, but the foundation for these can start as early as the preschool years.
"I'm a school system therapist. What we do has to be academically relevant," Schwartz says, noting that therapists based in medical centers may have a somewhat different focus even though their techniques may be very similar. Parts of Noah's therapy even now are aimed in the direction of school. His present goals include drawing lines from examples, using a tripod (three-finger) grasp with a writing tool, and opening and closing containers.
Self-care is already on the agenda as well, and Noah is learning how to operate buttons, zippers and snaps; suck through a straw; and feed himself with eating utensils.
Other therapists focus more on the school years. Carol Olimb, an occupational therapist who has worked in schools in Minnesota and has treated a child with Becker muscular dystrophy, says: "You're looking at adapting in the school itself. I've even gone to the janitor and gotten wrenches and adjusted desks for children. You're looking at the lunchroom to see if they're able to handle the tray. Are they able to open their milk cartons? You're monitoring their ability to get on and off the bus."
Occupational therapists may get involved, along with physical therapists, in how the child will get around in school, including the fitting and use of wheelchairs and walkers, and how arms and hands can be supported by splints and other devices.
Lori Rowley, an occupational therapist at Rancho Los Amigos National Rehabilitation Center in Downey, Calif., also helps school-age children with physical disabilities. She specializes in the use of mobile arm supports, which help a child maximize hand use even when there's significant arm weakness.
"I'll briefly ask how they're doing academically," Rowley says, "but I'm more concerned as an occupational therapist with their writing, their computer access and how they control things in their environment." In her assessment, Rowley includes such things as "how they toilet at school and whether they need special assistance."
Many aspects of pediatric occupational therapy are similar to adult therapy, except that adult goals relate mostly to work and home skills and children's goals relate mostly to play and school. But certain aspects of OT with children are very different from adult OT. That's because, says psychologist Jane Healey, children's brains are just not the same as adult brains.
Healey is a child neuropsychologist, which means she's had extensive training in how the developing brain and its various structures and functions affect learning and behavior. Her particular interest is children with dyslexia, a disorder in learning to read, and her practice has included many children with seizures and one child with myotonic muscular dystrophy (MMD).
|Occupational therapists may prescribe mobile arm supports, splints and head supports like those being used by this child with muscular dystrophy. Photo courtesy of Rancho Los Amigos National Rehabilitation Center, Downey, Calif.|
Healey says children's brains are in a state of flux, with various functions and their connections in the brain not yet assigned to a particular locale, as they generally are in adult brains. The child's experiences with his environment can influence brain development, just as brain development influences experience, she says. Healey, who has been an assistant professor of psychiatry at Mount Sinai School of Medicine in New York, now has a private practice in Ridgewood, N.J.
"What you normally find in neuromuscular diseases or diseases that affect the motor system are more perceptual and motor difficulties," Healey says. "They can't explore and touch things like other children, so naturally, they may not understand the complexities of three-dimensionality and other things quite as well as if they were moving in the same way that other kids are." Healey says that kind of problem may or may not lead to learning disorders.
"I think when there's motor impairment, their experiences in life are so altered," says Jamie Hillesland, an occupational therapist in Northwood, N.D. "Their ability to play and to get their hands dirty and to move a lot and to get those normal sensory experiences that kids get in growing up and playing — they miss that, for one thing.
"Kids with neuromuscular disorders become more sensitive," she adds. "Their threshold [for sensory stimulation] changes, because they don't stimulate those [sensory] systems as much." Hillesland, who manages rehabilitation services at Northwood Deaconess Health Center, is a certified specialist in sensory integration therapy (see Sensory Integration Therapy").
While few experts today dispute that therapies offered to children, including occupational and physical therapy, have to take into account the changing nature of a child's developing brain and how it's related to both motor and cognitive skills, they may disagree on exactly how that's to be accomplished. The method may depend on the thinking that prevails at a particular center or school district, as well as on each child's individual needs.
Both Jennifer Schwartz and Carol Olimb say they incorporate some sensory integration theory and techniques into their practices, but they don't rely on these exclusively.
Noah has received many kinds of therapy in his short life and has "come a long way" since his OT and other sessions began about two years ago, Faith Varcadipane says.
She's become an expert in Noah's various treatments and in the implications of his medical disorder. She now tries to incorporate OT activities into everyday life and advises other parents to do so without being too hard on themselves or feeling like failures if they aren't "doing therapy" the way they think they should be.
She remembers what a therapist told her a while back, after she'd broken into tears at having forgotten to practice something with Noah. "Calm down," the therapist told her. "It's not that you have to say, 'OK, it's therapy time.' It can be worked into your day."
The Varcadipanes live a few blocks from the beach, which, Faith says, "is fantastic for OT activities, like digging, putting the big shell in, taking the big shell out."
Noah now has glasses and seems to recognize (after breaking several pairs) that they help him to see. His hearing appears to be normal, and his walking has improved so much that he only uses a walker for long distances.
With help, he's starting to eat with a spoon, and he knows what to do with a crayon. Not long ago, says Faith, "he just wanted to bang everything. Now he knows, 'This is a crayon. This goes on paper.' I can see he's made that correlation."
For a child who two years ago couldn't pay attention long enough to pick up a Cheerio, it's a mark of progress that he now watches "Sesame Street," "Barney" and "Tele-tubbies" with evident pleasure.
Some parents might not be grateful for what Faith calls Noah's "televisionitis," but for her, she says, "it's an awesome thing."
Getting Started with an Occupational Therapist
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A form of treatment that's taken hold with many occupational therapists revolves around the concept of "sensory integration." The approach also has some opponents.
Sensory integration, or SI, therapy, began as part of OT in the 1970s. Started by OT and brain researcher Jean Ayres, it now has its own foundation, Sensory Integration International, in Torrance, Calif., which offers certification courses, membership services to parents, and treatment and evaluation for children. [Editor's note: As of 2007, SII ceased operations; however, there are still a number of organizations that offer similar resources and can be located through the Internet.]
SI theory says that impairment in a child's ability to integrate and process physical sensations can lead to a range of present and future difficulties. SI advocates say a child needs to perceive where his muscles are in space; where his head is (part of the sensation of balance); and what things feel like (tactile, or touch, sensation) for the brain to develop normally and process more complex information later.
Children with motor disorders may be especially prone to sensory integration problems, some SI therapists say, because they don't have as much access to usual childhood sensations, such as swinging on swings, spinning on merry-go-rounds or playing in sand.
Practice in experiencing the needed sensations improves their integration and processing in a child's brain, advocates of the theory say, so that the child is more graceful, comfortable and confident. Some also say — and this point has been the most debated and even refuted in some studies — that such practice can prevent and treat learning disabilities, such as reading disorders.
"I believe some of it," neuropsychologist Jane Healey says, expressing concern that parts of the theory reflect an old idea that children who aren't walking have to first be taught to crawl. That theory had its day, too, she says, and has since been discredited.
Noah's therapist, Jennifer Schwartz, agrees on this point. "Some children with cerebral palsy or muscular dystrophy may not be able to go through all the things that developmental psychologists say the child needs to do," she says. "But you take that awfully far in saying his cognitive development is not going to be normal or he's not going to be able to learn to read." She says she's not "rigid" enough to believe that.
Schwartz and many other OTs who use SI exercises look at them more as short-term aids to smoother social and motor functioning than as prerequisites for later gains in reading and arithmetic.
Children who are overly sensitive to touch — "tactilely defensive" — can probably be helped by SI therapy, Schwartz says. "A lot of kids don't want to stand next to each other if they have these types of problems, because the simple brush of another person's skin or clothing is too much for them." Getting "tactile stimulation" by touching shaving cream, rice and beans can help with this kind of problem, she says.
Children with tactile defensiveness and children with a poor sense of their bodies in space may, says Schwartz, have trouble touching things and people in general. They may steer away from close relationships and may not be able to tolerate loud environments such as the school cafeteria.
Even those whose muscles allow playing may avoid activities such as climbing on playground equipment or "not even have the desire to do that," Schwartz says. She believes SI-focused OT could help remedy those problems.
You'll likely hear about SI therapy if you get involved with OT, particularly if the program is school-system-based. SI therapy is generally pleasant and unlikely to do harm, but parents may want to consider costs and time factors in deciding how aggressively to pursue SI.