Children not defined by disability, mother says

Adam Essner, 6, can read about 50 words. He's working on mastering basic addition. He begs for extra computer time.

Adam has Down syndrome, an intellectual disability caused by a chromosomal abnormality, but he is capable of learning, his mother and teachers say.

October is Down Syndrome Awareness Month, and Adam's mom, Theresa Essner, wants people to know that Adam is sweet, caring and capable. With time, patience and drills, Adam can learn and exceed expectations.

If people have questions, she wants them to ask. And above all, she does not want Down syndrome to define her child.

"In the '70s, parents didn't even bring home children with disabilities. They were institutionalized. Later, they were put in special schools. I grew up not seeing kids with special needs," said Brenda Ressel, a special educator at Alma Schrader Elementary who also has a 4-year-old son with Down syndrome.

That is no longer the case. Adam has a homeroom class at Clippard Elementary, which he attends about 70 percent of the time. While in class, he has a designated aide who modifies the work for him, and Adam goes to gym, music and art like everybody else. The other 30 percent of the time is spent in the "learning center," where he receives attention in a small group setting.

"Kids learn social skills, they learn how to follow the group, they learn how to participate. It helps them as they grow and develop into an adult and try to fit in the community," Ressel said. "On the flip side, the students without special needs see them as individuals and not being very much different from themselves."

Down syndrome occurs when a child has an extra copy of the 21st chromosome, which affects cognitive development and can cause a range of medical problems. According to the National Down Syndrome Society, one in every 733 babies is born with Down syndrome.

At Alma Schrader, four aides work one-on-one with students with disabilities. Two of the students they work with have Down syndrome. A federal law requires that students with disabilities learn in the least restrictive environment.

Parent Claire Watson said that when her daughter Emma entered kindergarten, she was prepared for a fight. "But it was all in place. She had an aide. We were welcomed and embraced," she said.

Eight-year-old Cori Brennecke had a similar experience when she entered school at Clippard. Cori is now invited to birthday parties. Students in class look out for her and rejoice when she masters a skill.

Her parents, Chris and Monica Brennecke, say that Cori is more like other children than not.

"Cori likes to hang out with friends. Today we're going to the Big River to run the go-carts. Then we'll go to a pizza buffet," Chris Brennecke said. "Other kids treat her like anybody else."

That is not always the case outside of school. Essner said that some people stare or "shun our kids, almost like they're contagious." That's why she takes Adam shopping, to church and to sporting events. She has to keep a close eye on him because he frequently wanders, but she wants him to experience life and wants other people to see he is simply a child.

Ressel said there are significant challenges in raising a child with Down syndrome that she did not fully understand until having a child of her own with the condition. Among these are high medical costs. Her 4-year-old son still requires pull-up diapers. Adam Essner has had four sets of tubes placed in his ears. Watson's daughter Emma has had open heart surgery, intestinal surgery and eye surgery. Her first set of leg braces cost $700.

Another worry is a tendency for children with Down syndrome to be fearless. Emma enters a room of strangers and will climb on their laps and give them hugs, her mother said. Watson worries about this overly trusting nature and about her daughter's vulnerability.

Ressel doesn't question the extra time, energy or money she spends. "You just do it. That's what it requires," she said. "I understand that it takes patience, love and kindness. ... It's rewarding."

lbavolek@semissourian.com

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