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Pasco program prepares blind teenagers for adulthood in the sighted world

Last week when she planned to go to the pool with some friends, Madison Pugh, 13, surprised her mother.

The night before the outing, Madison "packed her own bag with all her own clothes and towel for the first time ever," said her mother, Amiee Walker. "She even found her bathing suit on her own."

Madison is battling Batten disease, a degenerative and ultimately fatal condition that affects her sight. At the most, her mother said, Madison may be able to see oranges and browns.

But this summer she is developing her abilities — and gaining confidence — at the Summer Transition Program at the Lighthouse for the Visually Impaired and Blind in Port Richey.

The program, Madison's mother said, is a "life-saver."

For five weeks this summer, teens from the small but easily identifiable community of legally blind students are honing skills for that all-important spring into adulthood.

Their disabilities range from the profound to the almost imperceptible, but one thing applies across the board: They need confidence to deal with the sighted world, and each other.

"Too often, people who are visually impaired feel inferior," said Lighthouse director Sylvia Perez. "I heard several (attendees) say, 'My friends don't know' " about their disabilities.

Often cocooned at home, albeit with books and television, "many don't know other visually impaired teens," Perez added. "It's a very good opportunity for them to open up and share."

Funded by the Florida Division of Blind Services, the program has run for years around the state and was offered several years ago in Pasco, but this is the first time under Perez, who took the helm of the local group last year.

The students are tackling everything from pool outings, overnight field trips and horseback riding to counting money, signing their names — just an initial and a last name, or three initials will do — and making lunch.

There's a big emphasis on accommodation and self-advocacy: not just letting the sighted at the colleges and workplaces where they hope to go know they're visually impaired, but asking for help and even helpful equipment.

Surviving on an island

On Thursday, six teens from Pasco and Hernando counties broke into teams to tackle one of the day's tasks: What are the 12 things they would take with them if they had to survive on a desert island?

Madison uses a Brailler to type her contributions. She and Derek Bliss, 18, of Zephyrhills and Mark Fruzia, 17, of Spring Hill say they'll take practical items including a "hunting kit" that has a rifle and fishing pole.

On the other side of the table, Katie Firmani, 15, and Kayla Long, 17, both of Wesley Chapel, and Alexis Merritt, 15, of New Port Richey come up with a list that includes hedge clippers to cut down branches for a hut. Alexis, whose green eyes belie no hint of the retinitis pigmentosa that threatens to narrow her vision to a peephole, has held out for soap.

"Okay, so you'll smell good when a coyote eats you," quipped Kayla, who wants to be a criminal profiler.

Taking the plunge

Kayla, who has cone-rod dystrophy, can still see shapes and colors. The program coordinators are "determined" to have her use a cane, she said, "and I'm determined not to."

Kayla used a cane through her first year and a half at Wesley Chapel High School, but tried to blend in. By her senior year, she was unapologetic.

"I tell 'em flat out, I am legally blind," she said of curious people. "You will see me run into stuff. My left eye will drift off. Ask whatever questions you want, and then we're done."

Alexis wore a patch in elementary school that switched from eye to eye, but "people are really mean. I had to cut it all out. I didn't tell anybody I knew."

Mark's friends occasionally rib him that he's "blind" — he'll throw a personal shortcoming right back — but they ask if he needs help seeing the board at school, for instance. His nystagmus causes his eyes to shake but what he sees isn't shaky; however he and Derek have trouble with distances and small print.

"Some of my closest friends I talk to seriously," said Mark, who goes to Springstead High School. "There are times I wish I could see what my friends can see" — so he could drive. "But most of them treat me like there's nothing wrong with me."

After lunch Thursday, students and coordinators headed to the New Port Richey recreation center pool.

Mark and Kayla pulled Alexis — who didn't want to get her suit wet — into the pool.

Derek sat under the shade of a canopy to write a story about a crime-fighting dog and cat.

Careful-moving Madison buddied up with Katie, letting herself be guided. Normally shy, Katie chatted on a cell phone with one hand. She escorted Madison with the other.

Pasco program prepares blind teenagers for adulthood in the sighted world 06/28/09 [Last modified: Sunday, June 28, 2009 6:50pm]
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