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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Tuesday, June 23, 2009

Teen "Speaks" Through Camera

I would like to introduce you to an AMAZING teen, who dispite his brain abnormality, has defeated all of the odds. Who has accomplished more than any of his doctors ever thought that he would. And who has found a way to communicate, with others without words....

Mohonasen High School student Robert Wright, 18, smiles as teaching assistant Yvone Pierce lines up his digital camera during a presentation of his latest photography.

Following is the article that appeared in the "Daily Gazette" Schenectady, NY, on Tuesday, June 9, 2009.

Teen "speaks' through camera

Handicapped student has outlet for his creativity.

ROTTERDAM — Robert Wright nods his head to his left shoulder and the flash of his digital camera briefly illuminates the Mohonasen High School library.

A smile forms on his face, as teaching assistant Yvone Pierce readjusts the camera fastened to his wheelchair. She asks if the positioning is all right and his light blue eyes roll upward, indicating the affirmative.

“When he’s ready to take a picture, he’ll snap it,” Pierce explains.

He nods his head again, depressing a small button affixed to his headrest. This time, he takes a picture of a classmate, who returns his beaming smile.

Suddenly, Robert is communicating with the world around him. Only he’s doing it without a single spoken word.

“This is a huge step in his ability to communicate,” said Sue Braiman, a business education teacher at Mohonasen, during an exhibition of Robert’s photography Monday.

The 18-year-old was born with holoprosencephaly, a birth defect that prevents the forebrain from dividing into hemispheres. As a result, Robert cannot talk or walk, and has extremely limited use of his hands.

Ordinarily, his only modes of communication are by using a sequence of eye movements or an electronic device that allows him to select from a sequence of statements. Using the camera provides him with a whole new realm of expression that was previously unavailable to him.

Robert’s interest in photography started in 2007 when a BOCES teacher was asking him about his interests. Robert indicated that he was interested in taking pictures of animals.

Later, Robert indicated he wanted to try taking pictures with a camera the teacher was using in the class. Initially, he was only able to take shots by having someone hold the camera for him and depress the shutter button.

Then in September, Robert began studying under photography teacher Rick Crowe, who suggested fastening the camera to an arm mounted on his wheelchair. That along with the shutter button on his headrest gave Robert more freedom with his photography.

But more importantly, it’s allowing Robert to engage his surroundings like he’s never been able to do before. Pat Wright, his mother, said Robert’s newfound love of photography has given him new purpose as he copes with his disability.

Photography also gives Robert an outlet, which is something his older sister, Mary —who also has holoprosencephaly —never developed. Wright said Mary, who is 10 years older than Robert, isn’t nearly as engaging with her surroundings.

“It does give him more independence,” she said of Robert’s photography. “I feel very proud that he’s identified an interest.”

Robert uses Mohonasen as his canvas and his teachers are amazed by his artistic instincts. His pictures range from the simple to the complex; from some that show depth and shadowing to others that profile the people he sees at school.

E.J. Hanley, one of Robert’s special education teachers, picks up one of his prints featuring a Mohonasen teacher talking. She explains how Robert focused instead on a poster behind the woman, who is ancillary to the shot he was striving to capture.

“He’s young adult with a tremendous brain and a good photographic eye,” she said.

Now the Wrights and Robert’s teachers at Mohonasen are hoping to find the teen a better camera to use. And for the time being, they’ll continue to help him explore his newfound hobby.

“We’re hoping there’s a lot more to be seen of his artistic ability,” Braiman said.

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