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Fighting Back: A story of spine-tingling determination

The outlook was bleak for Amos: He was born with the most severe form of spina bifida into a home with an absent father and a methamphetamine-addicted mother caring for her four other children as well.

But Los Angeles County did everything it could to help the family care for the infant, says Charles Sophy, MD, medical director of the county Department of Children and Family Services (DCFS), who related the boy’s story.

Those efforts included offers of transportation and home visits so physicians and therapists could see the infant. But the family started missing appointments, and healthcare workers noticed Amos lost weight and wasn’t bonding, cooing or otherwise thriving.

“The family finally rejected all services and DCFS stepped in, suspecting abuse in addition to neglect,” Sophy says. Amos was about 8 months old.

He was taken to a pediatric forensics specialist, who determined that he had three stages of second-degree burns, possibly from hot water, on his body.

“He was removed from the home and placed in foster care with a loving and caring couple who had been trained to handle medically fragile children,” Sophy says. From there, Amos began to improve.

In the next three to four months, his weight doubled and he started wiggling around as his muscle capacity increased. He started grasping objects, cooing and otherwise engaging with others.

He started physical therapy at 9 to 10 months old because he was not moving his arms or rolling as he should have been.

With continued appointments, Sophy says, Amos – by age 18 months to 2 years – was where he should have been with his form of the birth defect: Myelomeningocele spina bifida. This congenital condition occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine, causing nerve damage and disability.

The county took the case to court and terminated all rights of the biological parents. Amos was then adopted by his foster family, which already had an adopted 6-year-old boy with cerebral palsy, as well as adult children who were married and out of the home.

At age 2, Amos began speech therapy because of a delay in forming words.

“That took off,” Sophy says, and within a year, Amos made great strides in sound and word formation, although it was apparent he had some mental retardation.

In the next few years, he received occupational therapy to help him with sensory integration and other adaptive skills and range of motion.

He is confined to a wheelchair, uses a catheter and wears a diaper because of partial paralysis from the middle of the chest, where the spinal cord breach is, on down. One of the biggest threats to his health is respiratory infection. He has been put on a ventilator twice and receives intermittent respiratory therapy through home nursing services to try to keep him out of the hospital.
Pressure sores are another threat. To keep a child from developing pressure sores and harming the trunk, the family should make sure he reclines for 30 seconds every 30 minutes, says Frank Bregy, OTR/L, an occupational therapist at the Spina Bifida Clinic at Arkansas Children’s Hospital in Little Rock.

“The family should also be taught how to give the child range-of-motion exercises, not only to strengthen the child’s muscles, but also to prevent contracture of extremities,” he says.

Amos is now 8, attending second grade in a school run by the local Mental Retardation Society. “Amos is more like a 5- or 6-year-old in development,” says Sophy. “He’s learning his ABCs.”

His IQ was tested when he was 6, and he scored 63, meaning he has mild retardation. Sophy says, “Retaining information is an issue.”

”But,” he quickly adds, “he is happy, very interactive with people, eats well, is growing, learning and picking up concepts.”

According to Sophy, there is good structure in the home as well. “[Amos] knows when he is eating, going to bed, bathing. Having a predictable environment has taught him how to trust and has given him control over his life. The home is not chaotic.”

Amos has friends at school in addition to the friends he has made through gatherings of parents with handicapped children. His mother takes him to parks for the handicapped and to the neighborhood park, where he watches the children and attends their games. Sophy says, “The neighborhood kids are good to him.”

Sophy, who has a psychiatry practice, conducts sessions with Amos and his family, while Amos has his own individual therapist.

He has age-appropriate toys, such as a fire truck he can push along as it was specially modified by his occupational therapist. He has learned how to work on a computer both at home and at school to use drawing and coloring programs.

His home also has ramps, a special tub and toilet seat, as well as a hospital bed for him to sleep in.

Indeed, Bregy says, dealing with such children must be a team effort.

“It requires the involvement of health [professionals], parents and the school. There is a whole spectrum of issues that have to be taken into consideration,” he says. “Motivation – both the child’s and the family’s – is a big factor. The idea is to make the person as functional as possible.”

Adjustments have to be made, Bregy says, whether it involves the child wearing clothes that snap instead of button, a teacher giving the child oral tests instead of written tests or the parents getting the child special interactive toys and books.

Occupational therapists must have meticulous skills for looking at visual and perceptual needs, Bregy says, as well as fine-motor abilities. And it’s through the skills of an occupational therapist, Sophy says, Amos has made vast improvements upon independent-living abilities such as brushing his teeth, combing his hair, buttoning clothes and eating.

Like other children, Amos likes movies, books and computers. Dragons, Curious George and books with Velcro, fabric and other add-ons that provide sensory stimulation are his favorites, Sophy says.

One of the best parts of all is that Amos is “fun-loving, happy and secure,” Sophy says, adding, “He’s easygoing. He’s not sure of what he doesn’t have. But it’s interesting that his favorite movie is ‘Peter Pan,’ about a boy who can fly.”

TherapyTimes.com is a daily source for Nutrition, Physical, Occupational, Speech, Respiratory, Music and Pediatric Therapy Professionals containing editorials, articles and interviews.

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