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Continued: Speaking up

  • Article by: PAUL LEVY , Star Tribune
  • Last update: January 12, 2010 - 6:53 PM

Anoka County Commissioner Rhonda Sivarajah's son was only 3 months old, but he often didn't respond to his surroundings.

"We were blown off by the pediatrician," Sivarajah recalled.

It was her first child. The doctors knew best. That's what she kept telling herself. But when several more months passed and Sonjay, now a toddler, wasn't talking, Sivarajah and her husband again sought medical help.

Once, the pediatrician stood behind Sonjay and clapped her hands, Sivarajah said.

"See?" the pediatrician said. "He can hear."

But, Sivarajah asked, shouldn't Sonjay be saying a few words?

"Some kids have selected hearing," Sivarajah was told. "He's a boy. Boys are always slower."

Sivarajah had heard enough. There was nothing slow about this kid.

"He was so bright," she said.

When the little boy was 2 years old, obviously frustrated and with no language to call his own, he was tested by an audiologist and found to be "profoundly deaf in both ears."

The day was May 29, 1996 -- and Sivarajah can remember it as clearly as the day her children were born. For Sonjay, it was like a rebirth. For his mother, who says she had always been reluctant to speak out, it marked a new beginning.

Children and health are often great equalizers, and Sivarajah -- timid no more -- vowed to do everything within reason to help her child and others like him.

On hearing advisory panel

Sivarajah was appointed by Gov. Tim Pawlenty three years ago to the Minnesota Newborn Hearing Advisory Committee; she will serve as vice chairwoman of the panel this year and chair the committee in 2011. The committee was formed in 2007 in conjunction with legislation mandating hearing screening for newborns. It oversees the ways physicians and hospitals screen newborns and the procedures that follow when hearing loss is detected.

Sivarajah also is a member of the AG Bell Association for the deaf and hard of hearing and is president of the board of trustees for Northern Voices, an oral school for the deaf and hard of hearing in Roseville.

"You can't see hearing loss," said Kirsten Coverstone, an audiologist with the Minnesota Department of Health. But one to three of every thousand children born in Minnesota have hearing loss, she said. That's about 210 kids born in Minnesota each year, many of whom can't hear at all.

When Sivarajah learned of Sonjay's deafness, she straddled the parental tightrope that separates relief from grief. There was no time for denial.

Sonjay was fitted with hearing aids, but they offered little benefit. At 3, he had cochlear implant surgery. Cochlear implants are small, electronic devices. The external portion sits behind the ear. A second portion is surgically placed beneath the skin.

After the operation, Sonjay heard sound for the first time. It terrified him. It took six weeks before he would wear the implants for any length of time and then, one day, he left the implants on.

He already had been taught American Sign Language. He would now learn cued speech, a phonetics-based way of learning language. Sivarajah was taking classes in Faribault, trying to learn cued speech.

New school

At 5, Sonjay spoke limited English. Then, in 1999, Northern Voices opened. The Sivarajahs were among the first eight families to attend a meeting to see if there was interest in the school.

Sonjay seemed tentative at first, but by Christmas of that year, everything clicked, his mother said.

"He enjoyed all the typical preschool activities," recalled Angie Schnellman, the Discovery Room teacher who has been with Northern Voices since the beginning. "I knew Sonjay was comfortable when he and another student would sit under a table and sign each other. I told them, 'You better not be talking about me.'"

After four years at Northern Voices, Sonjay was mainstreamed into the Centennial School District as a third-grader.

Now in high school, Sonjay, who turns 16 on Jan. 26, is a member of the ninth-grade basketball team, "just one of the boys," his mother said.

Fellow Anoka County Commissioner Scott LeDoux played golf with Sonjay a few years ago. Ask LeDoux to describe Sonjay, and the former heavyweight boxing contender says, "A nice kid. An 'A' student. And tall. Taller than his father."

Just one of the boys.

"Kids like Sonjay can break all the myths about what deaf people and people with hearing loss can and can't do," Coverstone said. "And parents like Rhonda set examples that are worth others' attention.

"Rhonda is such a busy lady anyway. When her child was born, there wasn't newborn screening. Now she's devoted to other families making the most of it."

Said Sivarajah: "I used to be meek and mild. That changes when you have to advocate for your child."

Paul Levy • 612-673-4419

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  • Further information

    Tuesday January 12, 2010

    For information about Northern Voices, call 651-639-2534 or go to www.northernvoices.org.

  • Sonjay Sivarajah

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