Student Shining At ACC

A young volunteer reads a book about trains to Tabby

In this two-part series, meet Tabby, a student at the Anne Carlsen Center. Tabby was born blind and was later diagnosed with autism. Each day she is learning skills to help her communicate with others, and with every skill learned is becoming more independent. Her mother and ACC staff members share her story, and the triumphs she’s lived since becoming a student at the Center.

Nearly everything about Tabby is rare. From her abilities to her zeal, Tabby is someone who can recharge your life. She dishes out her energy and zest for life in heaping bucketfuls each day.

When she was born, doctors believed Tabby had an extra 13th chromosome. This additional chromosome, though, would have likely led to her death before she reached her first birthday.

Later, it was discovered that, instead, she had been born with an extremely rare condition called Anophthalmia plus syndrome. This condition, effecting less than 200,000 people in the United States, is characterized by underdeveloped optic nerves, as the eyes do not fully develop while a baby is forming inside the mother. The syndrome does not shorten an individual’s life span, but can present possible complications such as a cleft palette. Eye infections are a common symptom of Anophthalmia, as the eye sockets do not drain as efficiently as sockets containing fully-developed eyes.

Because she was born without eyes, Tabby’s world is one without color, light or darkness. But her world does contain opportunity, joy, and many people who love her.

Fearless

Part of what makes Tabby such an intriguing and unforgettable child is her fearlessness. From the time she was very young, her parents were determined to make Tabby’s life as full as possible. They chose to not define her life by her disability. Instead, they let Tabby define her own life.

“We try to make everyday life as normal as possible. We don’t treat her as disabled,” says Crystal, Tabby’s mom. “We still let her ride her bike and do a lot of things. We just have to help her.”

Many children with blindness are not able to walk unaided until they’ve reached 24 months of age. But when Tabby’s parents saw their child propping herself up with furniture and taking steps, they pushed Tabby toward an early goal. She was walking unassisted by the time she was just 11 months old.

Activities such as walking up or down stairs may create invisible barriers for many people who live with blindness. Tabby, on the other hand, enjoys running up the stairs in her family’s home and sliding down the banister. She loves to be in motion and is perfectly capable of picking herself up if she falls down.

“Many times people with blindness will walk with their arms stretched out to help them feel their way,” says Crystal. “Tabby just walks. If she showed us fear, we’d probably treat her differently than we treat her now.”

Finding the Center

After their daughter had attended public school for a few years, Tabby’s parents decided she needed more specialized care. They were told about the services the Anne Carlsen Center provides, and about how the Center could help their daughter grow.

Tabby first visited the Anne Carlsen Center’s Jamestown Campus in early 2005, staying from the middle of January to mid-February. Those 30 days provided a glimpse into what could be possible for Tabby.

“She made more progress there in 30 days than she had in three years in the school system,” said Crystal.

Tabby’s parents enrolled her to attend the Center as a day student in the fall. She does not live at the Center, as many of the other 56 students at ACC do. Instead, she arrives ready to learn for class at 9 a.m. When classes are finished at 3 p.m. she returns home to her family in Jamestown.

Tabby was diagnosed with autism, one of the fastest-growing developmental disabilities in the nation. According to the Autism Society of America, autism affects 1 in every 150 births. That rate has continued to rise in the last decade.

ACC is meeting the challenges of autism head on, providing supports for individuals, and their families, living with autism or disorders on the autism spectrum. These supports can extend beyond the walls of the Center’s Jamestown Campus and into the home.

“There are many characteristics that are similar for people with blindness and with autism,” says Steph Nelson, a speech therapist at the Center who works with Tabby. “You need to deal with the diagnosis, but at the same time, you need to individualize the services to the need of the student.”

Situations that many people might find insignificant can pose challenges for someone with blindness or with autism.

“Tabby doesn’t like things to be changed,” explains Crystal. “If we rearrange a room, she will shut down and sit in only one specific spot.”

Learning Skills

Tabby and Lanna Slaby, a teacher from North Dakota
Vision Services, work on therapy with the assistance
of a rubber ball. Slaby visits Tabby each week
to work on a wide variety of skills.

As a student at the Anne Carlsen Center, Tabby is learning functional and recreational skills that are helping her be more independent. Her condition is rare, but at the ACC Campus, it isn’t Tabby’s condition that is being treated; it is Tabby the person who is being nurtured.

“Tabby is blind, not just visually impaired. Then with her medical acuities, she is very complex,” says Sharon Olson, her teacher at the Center. “If she doesn’t feel well, that affects her behavior. As a teacher and for the staff, we have to keep all those things in mind.”

The most important skill Tabby is learning as a student is communication. Because she isn’t able to talk, if Tabby is not feeling well or if she needs a break, it is crucial she have the ability to relay that information to people around her.

Before learning ways to communicate Tabby would try to communicate with vocalizations and inconsistent gestures. But through consistent educational programming and therapy, and the help of specialists, Tabby has learned to use sign language.

“It takes a lot of patience that I never thought I had,” says Crystal. “But Tabby has taught us more about life than we have taught her.”

“Tabby is a very special girl with a very special family,” says Nelson. “They have made a lot of sacrifices for her and love her very much. They always want to do what’s best for her.”

Next month we will continue this two-part series about Tabby. In April, we will examine her daily routine at the Anne Carlsen Center, and the skills she is learning to become a more independent person.