In 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.

'A Terrible Nightmare'

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 (see Quest, vol. 6, no. 4 and vol. 6, no. 5). 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."

A Big White Folder

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.

A Child's Occupation

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.

Adapting At School

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."

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