‘Along for the ride’
Published 5:00 pm Saturday, October 22, 2011
Meet Will Noterman
Will seems like your typical 13-year-old who loves movies and thinks school is boring. He likes to ride his bike, loves shopping and would eat chicken nuggets all the time if he could.
But Will isn’t your typical teenager. He was diagnosed with Down syndrome at birth and doctors think he may be autistic.
Will forges onward with the help of his parents and his special education teachers at Ellis Middle School in Austin.
“When they said he had Down’s, I was like, ‘Yeah, that’s all right,’” his mother Karen said. “Then you find out all these health issues and all these behavior issues. Many, many — a high percentage — get Alzheimer’s in their 30s.
“And it’s like, ‘Jeepers creepers, I sure didn’t know all these issues were going to come up.’”
And, according to Karen, Will’s had his share of health problems. One of Down syndrome’s nastier qualities is how it can affect the heart. About 30 to 50 percent of patients with Down syndrome have heart defects and 8 to 12 percent have gastrointestinal tract abnormalities present at birth, according to the Down Syndrome Association of Minnesota. All babies have holes in their hearts as the heart forms, but those holes eventually close. The holes in Will’s heart didn’t close, though, and he had to have corrective surgery to close the holes shortly after he was born.
Luckily for him, Will’s family is more than willing to take care of him and make sure he’s safe. His family always knows where he is just in case he gets upset, which is a common trait among people with Down syndrome.
Will can’t adapt to change as easily as most other kids, which means he can get upset if something out of his everyday schedule happens. Sudden changes can be difficult for Will to take.
Having Down syndrome means Will’s brain hasn’t developed at a normal pace, and his developmental disability is more severe than most, according to his parents.
Because of his disability, Will’s speech is difficult to understand, at times. His reading and math skills are near that of a first-grader. But that’s another area Will is fortunate: His teacher at Ellis Middle School is patient and willing to teach something until Will is able to grasp it.
“We do things at a slower pace sometimes,” said Kate Jordal, Will’s teacher. “We can be almost repetitive at times. I just find a way to make the same concepts work for them.”
Because Will lacks some social skills of an average 13-year-old, he has trouble socializing. He may not understand it’s inappropriate to push and shove or not listen, but there are classes for that at school.
Those social concepts “do come easily to the average person, but to some of our students it’s just a difficult concept,” Jordal said.
Jordal is one of many saints at Ellis. She comes from a department of saints who have to know all and be all to their students, no matter their needs. Being a special education teacher means teaching all the typical academic courses, plus the life skills and social skills general education students pick up from preschool through grade school. Each special education teacher is certified to teach at least one of 14 types of special students with all manner of needs, from a student who’s physically impaired with cerebral palsy to someone with a traumatic brain injury.
Will’s parents said they want him taking more social skills classes. When they met with Will’s “team” at the beginning of the school year, they told his teachers, counselors and specialists that he requires more socialization.
Some days, at school, he gets in a bad mood and doesn’t want to learn. On a Friday when his classmates were getting ready for a birthday party, Will was sullen and somewhat obstinate. He flopped himself onto a table that classmate Rachel was trying to clean. He ran after Mrs. Jordal and disappeared for several minutes when she walked out of the class to talk with another special education teacher.
Not every day can be a good day, according to Will’s parents. Though Will started school when he was about 3 years old, he has much more schooling to go.
Some special education students go to school until they’re 21, but Karen and Will’s father, Dan, aren’t sure how well school will work for him. He tests at a severely handicapped IQ level, his parents said.
“It’s not like he’s going to go out and get a job,” Dan said. “He isn’t ever going to go manage his own money.”
Despite his low IQ, Will is always aware of his surroundings. When he decides he wants to work at school, he’ll work just fine. He loves the jobs class, where he and his classmates help clean the cafeteria after lunch. He moves tables with ease, since he’s a pretty big guy. He loves to recycle, as he understands how to keep trash in order. It’s that order that many special education students need. Once he starts working, he smiles, laughs, acts coy, shy and generally happy.
Will’s future is as uncertain for him as words are. He does as he pleases and learns what he can. He enjoys meeting people and going shopping. It’s pretty obvious he loves his family, his toys, his movies, his bike. He’ll keep pedaling wherever life takes him and his family will do its best to catch up.
“That’s the epitome of a special needs mom,” Karen said. “When you’re on a tandem bike, when you have no control. You’re just along for the ride.”
Look for this and more in Southern Minnesota Magazine. Call 434-2220 to subscribe.