Jude has Down syndrome -- and a lot of potential

"Victory!" he shouts in imitation of his mother's reaction, thrusting a fist into the air and eliciting chuckles from the adults around him.

Lots of kids like Jude aren't even born. Nine out of 10 mothers who find out their children will have Down syndrome abort them.

As they celebrate October as Down Syndrome Awareness Month, Jude's parents, Bob and Tracie Killar of Slingerlands, hope to clear up some of the negative perceptions about children with Down syndrome that lead to that sad statistic.

Difficult start

"When they told us he had Down syndrome, I was devastated," Mr. Killar remembered. "Whatever my thinking was about people with Down syndrome, it was all very negative."

Mrs. Killar had worked for diocesan Catholic Charities' AIDS Services and for Community Maternity Services, so she had dealt with children with special needs before. Still, knowing that some children with Down syndrome have serious medical problems, she initially "went to a negative place, and Bob went to a positive place."

"We bonded very quickly," Mr. Killar said of himself and his son. "I said his name and he perked up, and the nurse said, `He knows his daddy's voice.' I fell in love with him immediately."

Intervention

"Kids with Down syndrome have low muscle tone," his mother explained. "His head and neck just hung -- he was like a Raggedy Ann doll."

As part of a Medicaid waiver program, the couple were able to choose Catholic Charities to coordinate Jude's therapy. "I really believe in and respect the Catholic Charities system," Mrs. Killar remarked. "We have a service coordinator, Cheryl Fiore, and we meet with her once a month. I can't say enough about her role and Catholic Charities."

Therapy

"We try not to overwhelm him; but whatever help we can give him, we'll do," Mrs. Killar told The Evangelist. "If we see signs that he's sick of these people, we'll decrease."

So far, Jude seems to thrive on his packed schedule. When Christina Coppola of Catholic Charities Disabilities Services came to visit on a recent morning, Jude ran to her for a bear hug and immediately demanded that they watch a video on fire trucks.

Respite time

"I just play with Jude, teach him how to swim, take him apple-picking," Miss Coppola explained.

Although Jude's motor development lags about a year and a half behind that of other children -- while his sister Lily could jump at 18 months, three-year-old Jude only recently learned how -- his mother noted that his mental ability is "pretty amazing. He scores within the average range for a typical child. He still isn't testing developmentally delayed."

Development

"It takes as many as seven muscles in your mouth to form one letter," Mrs. Killar said. "For Jude, to speak is like exercising is for us. It's really hard! It's a big deal that he can say three words together."

The Killars credit Jude's therapists for helping him progress so steadily but noted that Kevin and Lily are also role models for Jude, who wants to be like them. During a recent therapy session, Jude pulled himself across the floor belly-down on a scooter, urged on by occupational therapist Martha Burns -- as Lily waited in the wings for her turn.

God's gift

"Jude is a creation of God, so we have to credit God first for Jude and what he's become," his wife added.

Faith has been a "huge part" of the family's lives, noted Mr. Killar. "We look for the good, and there's so much good about Jude. He's such a wonderful little boy! If we didn't have faith and were just looking at him as a person with a problem, we might focus more on the problem."

'Typical' kid

"I'd like people to know that Jude is more like typical kids than different," Mrs. Killar stated. "People look at Jude and think of all the things Jude can't do, and make assumptions when Jude isn't different."

She remembered one woman talking about a summer camp for children, who then added, "Oh, but Jude probably couldn't go to that camp."

"Why not?" Mrs. Killar questioned. "They think he's retarded. If you put Jude in with a group of other three-year-olds, he'll do pretty much the same things."

Misconceptions

"People have said things to us like, `I know a 20-year-old with Down syndrome, and he mows the lawn,'" Mr. Killar said. "There's a perception that people with Down syndrome are profoundly retarded."

The Killars realize that misconceptions are understandable, since they had their own before Jude was born. But they noted that today's medical and therapeutic advances mean ever-expanding possibilities for people with Down syndrome: They're not only living longer -- in many cases, to 55 and older -- but "some people have their driver's licenses. We know a 20-year-old with Down syndrome who's a terrific piano player," said Mrs. Killar.

Being Jude

"The stereotype for Jude is that he looks like he has Down syndrome," said Mrs. Killar. "He may never be delayed, but he's always going to be different because of how he looks. But he has as much potential as anybody else."

Nearby, Jude was settling down to work on a puzzle. "Where does that go?" asked his therapist.

"Here!" Jude said triumphantly, slamming a puzzle piece into place.

(10-28-99) [[In-content Ad]]