Photo courtesy of Regina Long
Allie Shanks (center) performs on stage at the “Best Buddies” talent show.

The day in the life of a teenager with Down syndrome

by JACQUELINE MCCLURE

If Allie Shanks and I were best friends we would have lots of sleepovers on the weekend. She would paint my nails black (my favorite nail color) and I would paint Allie’s nails pink (her favorite color). We would stay up late eating pizza and cake, even though we should be eating healthy. We would talk about her favorite movies and music: High School Musical-both the movie and soundtrack. At school, Allie and I would definitely sit next to each other in class, in case I needed help with an assignment. I would be on all the sports teams and Allie would be the captain of the cheerleading squad. We would share in each other’s interests and hobbies. Allie would teach me how to bowl because it’s one of her favorite hobbies, and she’s pretty good too. I would talk to her about the latest book I read for class, “True Story: Murder, Memoir, Mea Culpa” by Michael Finkel. The only problem is that she would lose interest very easily. We would drive to the movies to see the latest teenybopper movie. On the way there, we’d listen to none other than the High School Musical soundtrack, and she would be most likely singing along.

However, Allie isn’t my best friend. She’s my sister’s.

Here are the things I know about Allie Shanks. She is 17 years old, 5 feet 2 inches tall, and around 150 pounds. Allie was born with Down syndrome, a learning disability affecting around one in 800 births. It is caused by the presence of an extra copy of a chromosome, known as chromosome 21. The disability was named after John Langdon Down, a British doctor who first described the condition in 1866 as a combination of major and minor differences in body structure. Allie’s almond-shaped brown eyes — also referred to as an epicanthic fold of the eyelids - are one of the physical traits Down syndrome individuals share. Other features associated with the disability are flattened facial features, shorter limbs, poor muscle tone, smaller head size, and a protruding tongue. According to the Mayo Clinic, as many as 5,000 babies are born every year with Down syndrome in the United States.

Allie comes from a divorced family, but you would never know it from her upbeat and lively personality. Unlike most high school students, she is the happiest 17-year-old girl I have ever met. Allie is an only child and lives with her mother, Cindy, in a condominium about 5 minutes from her high school, in Chesterbrook, Penn. Chesterbrook is a commercial neighborhood, population 4,625, about 30 minutes outside of Philadelphia.

The Truth About Down Syndrome

The myths, that children like Allie with Down syndrome need to be in segregated special education schools or older adults usually live in institutions, are simply not true. Most people with Down syndrome live with their families, go to mainstream schools, read and write, and perform various jobs as adults. People with Down syndrome can live fulfilling independent or semi-independent lives.

Upon graduating from high school, Allie and many of her classmates will go on to attend the Center for Arts & Technology, or better known as the CAT Pickering Campus in Phoenixville, Penn., a vocational school that services six districts in Chester County. They have the option until they are 21 years old to study from a variety of occupations such as cosmetology, culinary arts, and horticultural and landscape gardening.

Life Skills in High School

Down the road from Allie’s home is Conestoga High School, where in Room 106, Mrs. Long, Mrs. Brennan, and Mrs. Dewees teach life skills to Allie, my sister, and five other students at Conestoga High School. While Allie is not the most academically advanced student, her teachers all agree that she is by far the most outgoing and helpful. On average, life skills students usually come to Conestoga at age 14 and graduate five years later, the same as all the other students in the building. However, Mrs. Long said about one to three graduate every year from the program because not every student starts at the same time.

The life skills room looks a lot like an elementary school classroom. It is decorated with a white erase board; a food pyramid poster; the alphabet in cursive; an American Flag; a sink to wash your hands; a “proud of our pets wall” featuring students’ dogs, cats and reptiles; a half dozen potted plants; three iMac computers; mailboxes for each student; a calendar; and a few art replica pieces including a laminated poster of Vincent Van Gogh’s Starry Night . On the other side of the room is the “Journal Words Wall,” which is filled with adjectives, nouns, and verbs to help students write what they did in school in their journal at the end of the day for their parents. There is also a microwave with a simple four-step user key and a laminated poster that reads: “We’re all one race: HUMAN,” and has a picture of people joined in a circle holding hands.

But are we educating outside of Room 106 that we are all human?

In 2005, a Special Olympics study on youth attitudes about intellectual disabilities showed only 30 percent of seventh- and eighth-graders would invite a peer with an intellectual disability to their homes or to the movies.

Life Expectancy

According to the Mayo Clinic, life spans have increased dramatically for people with Down syndrome. In 1929, a baby born with Down syndrome rarely lived to age 10. Today, someone with Down syndrome can live to 50 and beyond because of early interventions and better care.

Approximately 50 percent of children with Down syndrome are also born with some type of heart defect, so every day for 45 minutes Allie and her classmates attend gym class where they get a chance to work out and set goals to maintain a healthy lifestyle.

After lunch, the students have a lesson on nutrition. Teaching health and nutrition to life skills students is a bit different than teaching it to other students. The learning style is very black and white, right or wrong, with no room for ambiguity to confuse students. Mrs. Long simply splits up two sections on the board and writes “Healthy/Unhealthy” while the students go around the room and talk about what they had for lunch. On a recent afternoon, a few students that afternoon had salad with ranch dressing, ham, eggs, and olives, which racked up a high calorie count. However, Mrs. Long teaches the students that salad is always a “healthy” choice.

Conversations

It happened to be Mrs. Long’s first day back from maternity leave, so there was lots of catching up to do and even a small welcome back party at the end of the day. The students sat around a table listening to music on the radio eating fresh fruit cups and drinking lemonade that Mrs. Dewees, another life skills teacher, so kindly brought in. KC and The Sunshine Band came on the radio, and Allie broke out into a groovy dance in her chair swaying her hands and shoulders to the beat of “Get Down Tonight.”

After being gone for six months, Mrs. Long was curious about what she missed out on. She asked the student’s what had been their favorite field trips.

“Minella’s Diner,” said a blond, petite girl named Claire in a Minnie-Mouse-like voice, about a local landmark eatery.

“The trip to the mall,” said Jeff about a trip to King of Prussia, the largest mall on the East Coast.

“My favorite part was when Mrs. Dewees took her boot off at the store and tried to return it,” Allie said, laughing so hard she could barely get the words out. A chorus of giggles followed her comment reminiscing on a trip to Target. The students had gone to Target to learn a lesson on purchases and returns. Mrs. Dewees took off her boots at the customer service counter and tried to return them without a receipt, but failed to do so in an effort to show the class how important it is to keep a record of everything they buy.

Soon, the talk changed to sports and another teacher from down the hall came to welcome Mrs. Long.

“I went to the Sixers game last night, and the cheerleaders threw t-shirts into the crowd!” said the teacher.

“There’s a thing like that at the Philadelphia Wings game where their cheerleaders, the Angels, do that,” Allie said about the city lacrosse team. “I’m going to try out for them one day.”