- Associated Press - Saturday, March 19, 2016

BEAVER, Pa. (AP) - When Judy Pamer looks at her son, she sees a typical teenager — a boy who’s popular in school with lots of friends, likes math, plays cymbals in the band, loves to cook and is fun to be around.

Some people, who don’t know him well, however, see Karl differently.

“The community doesn’t look at my son the way I see him,” the Beaver mom said.

Karl was born with Down syndrome, a genetic birth defect that results in some degree of cognitive delay and increased risk for health problems and medical conditions.

“And I can’t change that he has Down syndrome, but I can change the way the community may see him.”

Judy poignantly remembers a little girl from her childhood.

She and her friends knew the house where the girl — about the same age as they — lived.

“I knew of her,” Judy said, but the girl was rarely seen; never a playmate.

She had Down syndrome. Her overprotected mother kept her shielded, isolated from society.

For many years, this was the approach. Well into the first half of the 20th century, standard hospital procedure was for “physicians to advise parents to institutionalize their newborn infants with Down syndrome,” according to the National Association for Down Syndrome.

Appalled, Judy and her husband, Kevin, were not about to let that happen to Karl.

Since the day he was born, they’ve been advocates for their 17-year-old son, a sophomore at Beaver Area High School, giving him every opportunity to be understood and accepted.

“I said to myself, ‘No, my kid is not going to be the town token,’” Judy said. “I want him to be more than that. My husband and I are both committed to making sure he has better opportunities than some people who came before him.”

Thankfully, a lot has changed to help them in their efforts. Today, NADS said, expectations have expanded, classrooms are more inclusive, and rights are protected.

And Karl couldn’t be in a better school district, Judy said, to enable him to succeed.

Students “could not have been more accepting. Beaver does a really good job with inclusion.”

Because Karl is not “fluent enough to keep up” in some of the faster-paced classes, Judy said, inclusion is not total. He participates in band, science and crafts with other students, but for reading and math he takes life skills classes.

“He speaks very softly and is articulate, but you can tell he has speech issues,” Judy said. “His vocabulary isn’t as large as kids his age. Math is his strong suit. He’s very good at math. Physically, he’s not as agile as other kids, especially with stairs.”

When Karl was born, Judy said she looked up the definition of a word that today is considered disparaging: retarded.

“The word ‘retarded’ is a bad word now,” Judy said, but she believes it really is a perfect definition.

“It means slow. Not can’t, won’t or never will. Just slow.”

And in a nutshell, that’s Karl, she said.

“He moves slower, talks slower, learns slower. But he can do things. Give him some time.”

Socially, Karl’s not as savvy as his peers, either, but friends help with that.

They assist him in marching band; one percussionist now teaches him to play drums. They visit and include him in social events.

And because of his good looks, Karl’s popular with girls.

“Karl is handsome and he knows it,” said Judy.

A classmate asked him to accompany her to an ROTC military ball. Another asked him to an upcoming freshman-sophomore dance.

Most touching is that Karl’s peers are not benevolent out of duty or obligation.

“They just adore him and are so attentive to him,” Judy said. “They want to spend time with him. He is great fun to be around. Very funny, too.

“If you give opportunity to do the right thing, they will always do it,” she said of teenagers.

Saturdays, Karl participates in Bravo, a musical-theater dance class for students with special needs at Keystone State Music Theater in Cranberry Township.

“He just loves that,” Judy said.

And loves to cook, too.

His specialty is sauce and meatballs, made from scratch. On weekends, he makes “delicious French toast,” his mom said, and helps her plan dinner menus for the week.

Likely, Karl gets his culinary skills from his mother, who also loves to cook.

He grew up helping her in the kitchen — stirring sauces, reading recipes, measuring ingredients — all of which helped to develop his reading and math skills.

Every Friday, Karl goes to school early and helps in the cafeteria — prepping salads and baking cookies.

“The ladies in the cafeteria just love him,” Judy said.

“I see Karl as, for the most part, a typical teenager. He’s very sweet and personable.”

And resilient.

Karl was not breathing when delivered by Caesarean section Feb. 8, 1999; his umbilical cord was wrapped around his neck.

After resuscitation, he was whisked to a neonatal intensive care unit.

“It was all pretty traumatic,” said Judy, who never got a chance to hold her baby.

“I got to touch his toe.”

It wasn’t until later that day that a doctor said he needed to speak with the parents.

He suspected Karl had Down syndrome — but also something else.

“He also had a hole in his heart,” Judy said, and was taken by ambulance to West Penn Hospital.

“Down syndrome went on the back burner,” she said. “We had other things to deal with.”

Karl is a cancer survivor, too, having developed leukemia at age 4.

Children with Down syndrome are 15 percent more likely to develop leukemia, a cancer of the blood-forming tissues.

Karl underwent chemotherapy treatments and is “considered cured,” his mom said.

And then last spring, he suffered another setback: catatonia. Though not common, it can cause regression in people with Down syndrome.

Karl wasn’t talking and would get lost.

“We were beside ourselves,” Judy said. “We had no idea what to do.”

It was suggested the Pamers consult the diagnosis referral clinic at the Down Syndrome Center at Children’s Hospital of Pittsburgh.

“It never occurred to us this was Down-syndrome related. We thought he might have a brain tumor,” Judy said.

Fortunately, she said, a doctor at the center was aware of the condition, having treated it previously.

Karl was given medication and has since recovered.

“My husband and I feel so grateful we have Children’s Hospital in Pittsburgh. I say they saved my son’s life twice.”

Karl’s at the age now when teens plan for their futures.

Judy and Kevin ponder that, too.

“We’re the parents of an only child. Karl has no siblings. I do worry about his future a lot. He will be in this community the rest of his life. Who will be there after we’re gone?

“I like to think he will have lifelong friends around to support him. I really think there will be.”

The goal, however, is for Karl to live independently, she said.

“He can stay here with us as long as he wants,” but she and Kevin are doing their best to equip him with skills to live on his own when he’s ready.

“I want him be able to choose. I don’t want him ever living in a group home,” she said.

Should Karl wish to pursue further education after high school, there are options, but they may “require some troubleshooting,” Judy said.

“I want him to explore all options to make sure he’s happy.”

Because of his love of cooking, she envisions her son working in a restaurant or running a catering business, “with a lot of help.”

Karl’s “life in this community depends upon him being accepted as a productive member of the community, a contributing member,” she said.

“I have no illusions he will need somebody to help him in life. At the same time, I don’t think his purpose is to be somebody else’s purpose. He has a purpose of his own.”

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Online:

https://bit.ly/1M0GzCb

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Information from: Beaver County Times, https://www.timesonline.com/

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