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Dwarf brothers take a big step in kindergarten

Thursday, June 13, 2002

By Gretchen McKay

The new pupil in Mary Ann Mihalko's afternoon kin-dergarten class at Avonworth Elementary was getting along well with most of his classmates. But he didn't know what to make of Will Graf and his adopted brother, Max.

Will Graf, left, and his brother, Max, get off the school bus for their first day of kindergarten at Avonworth Elementary last August. The boys, now 6, were born with achondroplasia, the most common form of dwarfism. (Matt Freed, Post-Gazette)

Born with achondroplasia, the most common form of dwarfism, the two brothers stood only about chest high to the other boys and girls.

"He kept telling Max he was too little to be 5, that he had to be 2," recalls Mihalko.

Max took it all in stride. Used to strangers' stares and pointing fingers, he simply pulled the boy aside.

"Well," he began with adult-like authority, "have you ever heard the word 'dwarf'?"

The boy shook his head.

"That's another word for little people, and that's what we are," Max replied. "We don't grow the same as other people."

"And I didn't have to say another thing," says Mihalko.

The first year of school is a milestone for any child, but it was a major triumph for Will and Max Graf and a success for their parents, Suzanne and John Graf of Ben Avon, who had worked closely with school officials to ease the boys' entry into the public school system.

Achondroplasia is rare in U.S. classrooms. Caused by a gene mutation in early fetal development, it affects one child in every 25,000 to 40,000 births. (By way of contrast, one out of every 800 to 1,000 children has Down syndrome.)

Yet there was never any question that the Grafs, who adopted Max from a South Korean orphanage in 1998 to give Will a companion, would enroll their children at Avonworth, their alma mater.

Still, it wouldn't be an easy transition for the 6-year-old brothers, who are just 34 inches tall and were last profiled in the Post-Gazette more than two years ago.

Even before the boys had finished last June at Wooden Ladder Pre-school in Ben Avon, Avonworth school psychologist Steve Strasser was on the Internet researching dwarfism; he also talked with the mother of two dwarfs to learn what to expect.

"We wanted to put everyone at ease," says Strasser.

"My biggest concern was, how are the kids going to react, and would I have the right words to explain?" recalls Mihalko, a 20-year veteran teacher.

Max Graf, second from left, participates in Thanksgiving festivities with classmates, from left, Gina Lucia, Stephanie Springer and Evan Smith. "The kids accepted and treated [Max and his brother, Will] like any other classmate," said teacher Mary Ann Mihalko. (Matt Freed, Post-Gazette)

The Grafs were even more anxious.

"We were afraid they'd get teased, especially by older students," says John, 37, a partner with the law firm Tucker Arensberg, P.C.

Even the boys recognized they were entering uncharted territory.

"They were both very worried about the 'baby' word," says Suzanne, 37, owner/partner of the Grand Hall at the Priory, a banquet facility on the North Side.

Despite their tiny stature, most dwarfs have normal intelligence, so academics wouldn't be an issue. Still, administrators realized the boys' disproportionately short arms and legs might cause problems.

So, even though the law didn't require it, they placed an aide in Mihalko's classroom to assist with toilet visits and walking. Weekly visits with an occupational therapist would help the children's writing and drawing. (Because their fingers are short and stubby, their fine motor skills aren't as developed as their classmates'.)

One of the Grafs' biggest concerns last fall was simply getting their children to and from school safely. Like most districts, Avonworth does not require seat belts on its buses. But Will and Max's disproportionately large heads make them top-heavy and more apt to fall out of their seats if the bus swerves or stops quickly. In the end, belts were installed on the seat behind the driver.

Other physical obstacles were easier to eliminate. Stools put the water fountain and bathroom sink within reach, and the latches of the locks on their lockers were taped up so the doors would be easier to open. The school also placed a smaller toilet in the boys' bathroom.

It was the social aspects that proved most challenging. The Grafs sent a letter home to parents and faculty explaining the boys' condition and asking them to allow the boys to do as many things on their own as possible. It also cautioned against picking Max and Will up -- dangerous because their spines are more susceptible to trauma than those of average children. The response, says Suzanne, was amazing.

"We got so much positive feedback," she says.

Still, it wasn't always easy sailing. Two days into the school year, some girls on the bus noticed the boys.

In addition to helping her sons adjust to kindergarten, Suzanne Graf and husband John had to deal with the medical problems that accompany achondroplasia. In December, Max underwent surgery that made more room in his spine for his spinal cord. (Matt Freed, Post-Gazette)

"Look at those babies with seat belts," they sang out, laughing. Big sister Laura, 8, an average-size second-grader, quickly set them straight.

That incident and the one with the boy who joined the class in October were the only ones. Other than not being allowed to tumble in gym class and needing assistance getting on and off the bus, the brothers faced the same challenges and made the same progress as their kindergarten buddies: gluing neatly, printing the alphabet in sequence, learning to listen while others spoke. Friday was the last day of school.

"It's really been a great year," says Mihalko. "The kids accepted and treated them like any other classmate." Max, the quieter of the two in preschool, even came out of Will's shadow.

That's not to say the brothers didn't garner special attention from their classmates. Every so often when they moved about the classroom, a boy or girl would tousle their hair or pat them affectionately on the head.

"But they're just being protective," says Suzanne. "They don't mean to be condescending, and the boys don't take it that way."

"It's in a kind way," agrees Mihalko. "They just really care about them."

The biggest setback came in November, when doctors decided Max needed major surgery. The bony part of his spine was compressing his spinal cord, causing pain. The operation, called a laminectomy, would be performed on Dec. 5 at Baltimore's Johns Hopkins Hospital. Max explained the procedure to his classmates on Nov. 14.

"I have to get my back fixed so I won't fall," he said matter-of-factly.

During the eight-hour surgery, pediatric neurosurgeon Benjamin Carson chiseled Max's hourglass-shaped spine to increase the opening for the spinal cord. Confident the spinal fluid was flowing, he handed the reins to orthopedic surgeon Michael Ain, also a dwarf, who screwed two rods to either side of the child's spine to keep it straight and then grafted bone taken from his hip over the hardware.

A cast that stretched from his thigh to chest protected Max's spine as it healed. On Feb. 4, just days after he received a shorter cast, the youngster was back in the classroom.

He could no longer ride the regular bus (an aide had to carry him to a special van) and he was in a wheelchair. But by March 14, the 127th day of school, Max was scooting around the classroom using a small walker, his bright-blue cast hidden beneath a T-shirt. By April 18, when school officials thought he'd still be requiring home instruction, he was back on the bus with his brother.

"He's made tremendous progress," says Mihalko. "I think the adults are more afraid of him falling than Max himself."

Will also has had his share of medical problems. On March 22, a severe headache revealed that the shunt doctors implanted in the back of his head to drain excess fluid on the brain was clogged and required surgery; it happened again a month later. But in all, Will missed only one day of school.

While both boys, who will stay together next year in first grade, are conscious they're much smaller than their classmates, everyone has made them feel as if they're part of the group.

"They're not on the sidelines watching," says John.

In fact, the only thing that prompts any conversation about size these days is their new baby brother, expected in late July.

Tests have shown he'll be average-sized, like Laura. But that's OK.

"We'll be taller for a little bit," says Max.

Gretchen McKay is a free-lance writer.

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