Man with cerebral palsy assists others with speech deficits
Jim Petrone, 41, has been unable to speak without the use of technology his entire life, as he has cerebral palsy, a group of disorders that involves brain and nervous system functions such as movement, learning, hearing, seeing and thinking.
But, he doesn’t let it get the best of him. Instead, he spends his time teaching others how to speak with the help of communication devices.
In fact, Petrone, a client of West Bay Residential Services, a private, nonprofit organization that provides care and residential support services to individuals with developmental disabilities, has mastered more than five communication devices. As a result, he recently began working with Colby, 9, a third grade student at Meeting Street School in Providence who also has cerebral palsy.
“It makes me very happy,” Petrone said of the experience with Colby.
For the past month or so, Petrone has been meeting with Colby, as well as Colby’s speech language pathologist, Anna Williams, every Monday morning at the school for 30 minutes to share conversation and get Colby up-to-speed on his device, a Vanguard Plus. The speech aid is a touch-screen gadget that is similar to the tool Petrone has used for more than five years, the DynaVox 3100.
Last Monday morning, the vibrant pair chatted about Colby’s recent trip to Florida. Using his pinky finger, Petrone typed in a question for Colby on his device, which resembles a large GPS.
“How was your vacation? I missed you,” said Petrone.
Colby, who was in a playful mood, didn’t use his board to reply. Rather, he looked at Petrone and gave a thumbs up.
Then, Petrone inquired about what Colby did in Florida. Through the device, Colby said, “I played Uno [and] ate tuna.”
Williams said visits from Petrone have been a treat. She is pleased that Colby has found an adult role model in Petrone while building his sentence structure skills.
“Jim has been really helpful getting conversation going,” she said. “Colby loves talking about Jim’s [self-operated power] wheelchair. He’s mesmerized by everything Jim has.”
In addition to spending time with Colby, Petrone also teams up with students from the Carter School, the high school that’s located within Meeting Street. He helps two groups of students who are about to graduate and advance to adult services understand and cope with the transition.
Nick, 19, who uses a BIGmack, a voice output device that can record a single message and be played to communicate, talked with Petrone about the weekend. Nick wasn’t feeling particularly talkative, so Petrone told him that he watched NASCAR races during the weekend.
For Petrone, volunteering his time at Meeting Street is a dream come true, as he is a 1991 Meeting Street graduate.
“I went there for 18 years,” he said. “I was thinking about school one day and I asked management at my house, ‘Can I please try to help out at Meeting Street School,’ and they said, ‘Yes, we will try.’”
Petrone volunteered at Meeting Street for four years before being offered a regular position. When he found out he was going to visit the school each Monday to teach, he was thrilled. In fact, he said he was, “speechless.”
“This school is the best,” Petrone said.
Further, Petrone also volunteers at the Cranston Police Department every Wednesday. He’s been a part of the team for 15 years and happily computes parking ticket information.
Moreover, Tuesdays he volunteers at TechACCESS, a community resource at 110 Jefferson Boulevard that offers information on many types of assistive technology and houses an on-site adapted computer lab for people of all ages and disabilities, as well as professionals providing services.
Penny Merris, the day activities director at West Bay, said she is delighted to see Petrone thriving. She also is happy that technology allows him, and others like him, to better communicate and live full lives.
“Thank goodness we’re at this point,” she said. “There was a time when somebody like Jim would not be able to communicate. We’d be kind of guessing at what he liked or what he didn’t like. It’s so cool because there are so many amazing thoughts that he shares with us. It’s so exciting when we find meaningful things for people to do in life. They are able to contribute to the community and do something that’s helpful.”
When he’s not busy at one of his volunteer positions, Petrone is the resident weatherman at West Bay and regularly announces the daily forecast. He’s so interested in learning about the weather that Tony Petracca of Channel 12 recently visited his home for dinner.
“Active weather patterns are his favorite,” said Merris. “Half the time he’s more accurate than the weathermen.”
Petrone relies on funding from the state to pay for the services West Bay provides, such as transportation to and from Meeting Street. During the last few years, the legislature has considerably reduced funding.
For the current fiscal year, lawmakers cut $24 million, which is more than twice Governor Lincoln Chafee’s proposed $9 million cut last spring. Several Ocean State lawmakers recently introduced legislation that, if passed, would restore a substantial portion of the fiscal year 2012 cut.
While Petrone is hopeful of the restoration of funds, right now he’s more interested in listening to Colby’s jokes.
“Why did the cookie go to the doctor?” Colby asked. “Because he felt crumby.”
The Meeting Street School at 1000 Eddy Street in Providence was founded in 1946 at 24 Meeting Street. The facility assists infants, preschoolers and children from birth to the age of 21 of all abilities. For more information, visit meetingstreet.org. To learn more about West Bay Residential Services, visit westbayri.org.