January 24, 2008

ISLAND PEOPLE….Nicholas Bibbey’s Journey


Nicholas Bibbey was born on Christmas Day during the blizzard of 1989.

“We drove all the way to Elizabeth City in four-wheel drive,” remembers his mother, Analee Bibbey of Hatteras village.  Nicky was the first baby delivered in Albemarle Hospital on Christmas Day.

Three years and three months later, Nicky became another first—the first child on Hatteras Island to be diagnosed with autism.

Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. 

The disorder impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.

“At first, he was just like any other baby,” his mother says.

Analee remembers that Nicky started sitting up, crawling, walking, and talking at the appropriate ages.

“He started saying words like Mama, Daddy, and ball, and then he just stopped talking,” she says.

She remembers his first birthday party.  He was sitting in his high chair with a little chocolate cake with a candle in front of him and many people singing “Happy Birthday,” but he paid no attention to any of the festivities, the people, the cake, or even the candle.

It took Analee and her husband Tom a while to come to the conclusion that something might be wrong.  They went back and forth with each other for some time, one expressing concerns and the other trying to be calming, until one day, they finally took Nicky to see Dr.  Seaborn Blair at what is now HealthEast Family Care in Hatteras.

After examining Nicky, Blair asked Tom and Analee if they had ever considered autism. In her mind, Analee was picturing autism in its most extreme forms, and she thought that the physician was surely mistaken.  

“I’ll never forget what he said. He said, ‘Analee, there are all shades and colors of autism.’”

Initially, Nicky was diagnosed with Pervasive Developmental Disorder (PDD) and was given a speech therapist and an early intervention specialist who would bring toys and play and work with Nicky on a regular basis.

The final diagnosis of autism came a little later, at the TEAACH (Training and Education of Autistic and Related Communication Handicapped Children) center in Greenville, N.C.  The diagnosis was, understandably, a little discouraging, But Tom and Analee didn’t lament for long.  “We sat there and had our moment of self-pity, and then that was it. We knew we had to learn how to deal with this.”

The road has not always been easy for Nicky, who is now 18, and his family, which includes an older brother, Gabe, 19, a student at Cape Fear Community College, and a younger sister, Rachel, 14.  

Nicky started preschool at the Methodist church in Hatteras.  At that time, autism was not as well researched and publicized as it is today.  Fewer people understood the condition and knew how to treat an autistic child.

The Bibbeys worked hard to learn everything they could about autism, and luckily, someone was always there to help.
 “From the very start, someone has been put in Nicky’s path that knew about autism.  Everyone who has worked with Nicky has been wonderful in their own way,” Analee asserts.

Representatives from TEAACH and Albemarle Mental Health would come to Hatteras to work with Nicky and help Tom and Analee.  Nicky has also worked with several resource teachers at the schools and has had an assistant at school all his life.

The community has been there for the Bibbeys as well.  Whether it was looking for Nicky if he wandered off or simply sitting at home with him while they went to their other kids’ basketball games, Tom and Analee could always find someone willing to help them out.

“A child with autism affects your whole family,” Analee notes, though she says that Gabe and Rachel are close to and protective of their brother.  Gabe, she adds, once got into some amount of trouble in school for punching out another student who called Nicky derogatory names.

For the past four years, Tom Bibbey has been working in southwest Asia, and he only gets home a couple times a year.  Still the family has had support.

Like most autistic individuals, Nicky struggles with social interaction and has difficulty expressing himself through speech.  But he is, nonetheless, full of spunk and sharp as a tack.  

He loves to sing.  He sings hymns at church, belts out his favorite songs in the car, and when he goes to Camp Royall, a summer camp for autistic children, he always sings in the talent show.

Except, of course, for the year he danced the funky chicken. 

He’s also has a passion for movies.  When he presented Analee with his Christmas list this year, it consisted almost entirely of movies—three handwritten pages, front and back, full of the titles he wanted to add to his already large collection.

He keeps all his videos out of their sleeves, and he places them on his shelves, upright, with their labels hidden.  His bedroom wall appears to be lined with unidentified black cases, but Nicky knows exactly which film is which.  Ask for any of those movies, and he could pull it off the shelf without even looking.   

When he was younger, Nicky had a special talent for escaping the house and wandering off.  One extremely foggy morning, he wandered down to the canal behind their house.  Realizing he was gone, the Bibbeys immediately went looking and called neighbors who might have seen him. The fog was so thick that they couldn’t see more than a few feet, and Nicky wasn’t responding to their calls.  Nicky was rescued that time, but another time when he wandered off, he almost drowned in the canal.  Ironically enough, Nicky still loves to swim. That’s just the kind of person he is—fearless and full of life.

Nicky’s day-to-day life is very structured and scheduled.  That’s how he works best.  He knows exactly what he is going to do every day.  He has to know each morning what he is going to have for dinner.  He knows which days he goes to school and when he goes to work.  He knows that on Saturdays he and his mom go to the library to rent movies, and that he goes to church and eats fried chicken on Sundays.   

Every Friday, without fail, Nicky wears a Gingerbread House T-shirt, because he knows that at 6 p.m. sharp he gets a Gingerbread House pizza.  

Nicky and his family are such dedicated customers that The Gingerbread House calls to let Analee if they are going to be closed.  Even after Hurricane Isabel, when the road between Frisco and Hatteras was completely washed out, they somehow managed to get Nicky his Friday pizza.

Nicky is now a senior at Cape Hatteras Secondary School, where he is enrolled in the Occupational Course of Study (OCS) program.  “He’s a great worker,” teacher Merri Jamieson says of her student.  

Nicky has done all sorts of volunteer work.  He cleaned the Buxton preschool for three years, helped raise the flag over the school, collected all the school’s recycling, and even worked for the Graveyard of the Atlantic Museum for a semester doing data entry in the gift shop.  
In addition to that, Nicky has become somewhat famous for his weaving.

As a way to raise money for Hotline, Nicky volunteered to weave fabric pieces together into a sturdy cloth, which would be used to make everything from purses to shoes to be sold at Endless Possibilities in Manteo. He produced such sturdy, tightly woven cloth, that his weaving was soon in high demand.  Hotline provided a loom for Nicky to use at school so that he could continue to weave.

“He’s made literally thousands of dollars for Hotline,” said Merri.  “His pieces go for anywhere from $85 to $100.”

Nicky also excels academically and is particularly good with computers.  “You can tell he’s just brilliant,” says computer teacher Georgia Hardee.  Nicky makes straight A’s in his computer classes, which are essentially unaltered for him. 

As part of the OCS program, Nicky must complete 360 hours of work with competitive pay in order to graduate. Fully aware of Nicky’s computer skills, his assistant, Donna Tokazowski, helped him get a job with Midgett Realty in Hatteras doing data entry.

Monday through Friday from 12:30 to 2:30 p.m., Donna takes Nicky to the Midgett 
Realty office, where he takes all the information on the company’s cottages and enters it into their computer system.  Most people find this kind of work tedious and frustrating, but Nicky loves it.

Not only does he love it, he is very good at it. For each cottage, there are approximately 50 fields to complete, and it only takes Nicky about three minutes to finish one cottage. Nicky enters about 30 cottages per day in the short time that he is there.  That’s Impressive, to say the least.  

Nicky could legally remain in the OCS program at the school for a couple more years, but he is determined to graduate in June.  He made his decision and informed his teachers and family that he would not be going to school anymore.  He will continue to work for Midgett Realty through June and will hopefully be able to find similar work elsewhere.  

Tom and Analee couldn’t be prouder of their son’s accomplishments, and Nicky couldn’t be more excited.  He has even found a pool in the Midgett Realty catalog, where he announced he would have his graduation party.  

“It has taken a village to raise this child,” says Analee Bibbey.  “It really has.  He has been accepted and helped along by our family, the community, the school, and the church.”

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