Down syndrome: Scott's story (video)

Carolina Astrain By Carolina Astrain

Aug. 14, 2012 at 3:14 a.m.
Updated Aug. 15, 2012 at 3:15 a.m.

Twenty-year-old Scott Appelt, who was born with Down syndrome, holds his "snake," a cord of rope that he constantly grasps, twirls and spins while rocking back and forth. Appelt has two older siblings who, their father says, took a commanding role in taking care of Scott when he was young.

Twenty-year-old Scott Appelt, who was born with Down syndrome, holds his "snake," a cord of rope that he constantly grasps, twirls and spins while rocking back and forth. Appelt has two older siblings who, their father says, took a commanding role in taking care of Scott when he was young.

HALLETTSVILLE - Judy Appelt remembers the night she brought her son, Scott Appelt, home from the hospital.

She remembers because they had to keep him at the hospital for five weeks after he was born because he was so small. Scott was born with Down syndrome.

Appelt, is an active member of TEAM, a Crossroads organization that provides training and education to parents with children who have physical and mental disabilities. On Saturday, TEAM is hosting a free conference for parents interested in learning more about what they can do to make their children's lives better.

"I think the hardest part for me was saying it out loud," his mother said.

Appelt was 43 years old when her youngest son was born at DeTar Hospital in Victoria.

"It wasn't planned," Appelt said. "But I can't imagine what our lives would be like if we didn't have him."

Even before he was born, the Appelts suspected Scott was going to have Down syndrome because of his mother's age.

But unlike most parents, the Appelts were ready to weather the storm.

Appelt already had been working in special education for four years and had just completed her masters at Texas State University.

It wasn't until Scott turned 4 months old that the Appelts told their older children about his condition. At the time, their daughter, Kelli, was 9 and their son, Derek, was 11.

His sister remembers being taken into an empty hospital room by a nurse to meet Scott.

"I remember being so excited to finally meet my little brother," said his sister, now a special education teacher. "I remember being scared to death to hold him because he was so tiny."

Kelli remembers their mother taking her and Derek into one of their bedrooms to explain Scott's condition.

"I hate to say now that we were devastated, but I think at the time we kind of were," his sister said. "We were young and didn't understand fully what it meant."

Kelli said she and her brother were expecting to have a "normal" little brother.

"So this was kind of a bombshell she dropped on us," his sister said. "I remember Derek and I both crying and being sad."

Kelli said she and Derek eventually came to terms with reality.

"We knew he was our little brother, no matter what," Kelli said. "We would love him just the same."

Scott's father, Larry, said it was a shock at first, but it was just a matter of facing the facts and loving Scott that kept them moving forward.

"I don't think I ever gave it a second thought," his father said. "You just have to tighten up your belt and man up to it."

Without the resources and people his wife knew through work, raising Scott would have been a lot harder, his father said.

"And luckily, our kids were understanding," he said. "We took the bull by the horns."

In two years, Scott will age out of the services provided to him by the DeWitt-Lavaca Special Education Co-operative in Cuero, where he's been going to school since he was 3 years old.

"I think that's one of the things that most parents don't realize," his mother said. "Parents don't understand that when 22 comes along, it's over with."

Judy is now in her 60s and Larry was recently diagnosed with Stage 4 renal cancer. Despite the bad news, Judy has managed to remain positive through it all.

"Before, Larry was working seven days a week and now he's home, so that's been a big change," Judy said. "Larry and Scott spend more time together now."

The couple put Scott on what's called a list for a group home, which is where they hope Scott will end up after they're gone.

"We'll keep him at home as long we as we can," his mother said. "And I'm sure Kelli and Derek will step up, if necessary."

The list for a group home is long. To date in 2012, there are 59,521 people on the list for group home services in the state of Texas and 326 of those are in the Crossroads area.

Martha Resendez is the IDD Community Services manager at the Gulf Bend Center.

The Gulf Bend Center is a non-profit organization that specializes in mental health and Intellectual Developmental Disabilities services.

Resendez said it's never too soon to get on the list.

"There's a lot of sacrifices that families have to make because we don't have capacity to meet everybody's needs," she said.

Judy put Scott on the list when he turned 11 years old, but she thinks she should have acted earlier.

"We were behind and we were never told," his mother said. "I'm not saying that anybody was responsible for telling us, but it happens."

Recently, Judy took Scott to one of his favorite summer destinations - Splashway, a waterpark in Sheridan.

"He enjoyed it so much," his mother said. "He just thinks it's the greatest. The only way I can get him out of the water is telling him that it's time to go eat."

School starts in a few days for Scott. On Aug. 27, he'll get on the 6:30 a.m. bus from Hallettsville and make his trip to Cuero High School. This year, Judy hopes he gains more life skills to ensure the possibility of getting a job after graduation.

"I understand that it will be a menial position," she said, "but I just hope that it's something that will give him a sense of purpose in life."



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