By Pamela Varma Brown
When asked if he is a flirt, 20-year Joshua Iloreta smiles broadly, his large dark eyes flashing mischievously. He loves music, has written his own rap song and wants to attend college.
In these ways he’s similar to many other young men his age. But unlike others, Joshua, who has cerebral palsy, lives his life in an electric wheelchair, unable to speak, watching and listening to the world around him.
He communicates via a Vantage computer on which icons are displayed in a large grid. By pushing a button installed on the side of his wheelchair, he is able to scroll through pages and pages of icons, selecting in order the ones that will spell out his thoughts and speak them out loud for him.
“I feel sad I am disabled,” he spells out.
“His mind is working. He can understand you perfectly,” says his mother Emma Iloreta.
Therein lies Joshua’s sadness. Locked inside his body are the ideas and aspirations of an ambitious man.
He can hold a conversation using his computer. It’s a slow process that requires the patience of everyone involved while he scans the selection of icons. He currently lacks the fine motor skills to type on a keyboard.
These limitations can be frustrating as his mind races ahead of the machine.
And though words and phrases can be added to his computer – he surprises a visitor when the electronic voice asks, “What’s up?” – there’s so much more Joshua wants to say. “What I want to say is not in my Vantage,” he writes.
Joshua has gone to public school throughout his life, primarily attending special education classes and currently attends Kapa’a High. He’s had an aide with him in every class and has gotten good grades, but his mother wonders how much of the schoolwork Joshua has done by himself. His parents have been told he can only barely read at first grade level.
Last summer Emma began drilling him on vocabulary words, how to tell time using a clock with hands, how to discern different types of money, such as $1 bills and $10 bills and other skills.
“He picks up pretty fast. He’s determined to learn and to do things on his own,” Emma says. “He’s determined to help around the house. He puts dirty clothes in the laundry room, changes his clothes even while sitting on the chair.”
But there is much he can’t yet do on his own. With only several months of school remaining, he and his family are faced with big decisions. Once he is out of school, what will he do?
His mother has been taking him to Honolulu for sessions of electrical throat stimulation that might wake up and strengthen his muscles, allowing him to speak. During one session, Joshua was heard whispering lyrics to a Beyonce song. When asked how he felt speaking words out loud, he flashes a 1,000-watt smile.
Progress has been slow, however, at only one or two visits per month, but flying to O’ahu for the recommended three to four treatments per week is not possible for the family right now. Emma has tried to purchase or rent throat stimulation equipment but has been told it is not available to the general public.
Emma and his father, Jimmy, would love to find experts on Kaua’i who can help.
Joshua’s part-time nurse, Ed Stumpf, said it has been difficult for the family to find cerebral palsy-specific help on Kaua’i. “Everybody with CP is different and which part of the body is affected varies from one person to another,” he said.
“It going to take a village,” Stumpf said. “Mom and Dad can’t do this alone.”
The Iloretas are concerned because their son Jason, a basketball and volleyball player at Kapa’a High, will be going to college this fall.
“The brothers are inseparable. The closeness is amazing,” Emma says. “Jason understands him better than anyone else. That’s why I’m worried when Jason leaves for school.”
Meanwhile, Joshua has a list of things he wants to accomplish.
He wants to attend college, study music and write songs. He wants to know if he can have a baby. He wants to get married when he is about 25 years old. He wants to ride a bicycle. “I want to do normal things with normal people,” he says through his computer.
Joshua is adventurous and loves to travel, having visited the Philippines multiple times, Canada, New York and other places. He celebrated his 20th birthday last month in Las Vegas while visiting sister Holly who lives there.
He attended the winter ball and the prom at school. And when Holly mentioned to her friend whose father is a Kaua’i fire fighter that Joshua wanted to go up Sleeping Giant mountain, that dream came true as well.
“He was on like a stretcher, they tied his legs and a seat belt and pillows around him and gave him an iPod. Six or seven guys carried him. They took turns,” Emma said.
Joshua volunteers at the county building, accompanied by a teacher from Kapa’a High, where he directs customers to various county departments and offices, sometimes leading them to their desired destination. He also volunteers at the Kaua’i Community College One-Stop Center and hopes to audit classes at the school in the future.
The Iloreta family hopes to find a personal assistant who will be able to help Joshua continue his community activities. Qualified people may contact Emma, 346-8017.
Most of all, Joshua craves contact with others his age, not “old people like my mom and dad and nurses,” he says. He has his own email address (Joshua_Iloreta@hotmail.com) and wants to meet new people in whatever ways are possible. He literally squirms with joy in his wheelchair at the thought of people reading his story.