The joy a parent may experience when they see their child smiling can be exceptional, which is why Chautauqua County’s area residents with special needs, and their caregivers, spend a day celebrating The Resource Center’s mission of raising awareness of disabilities.
TRC’s annual Step Up For Autism Walk will be held from 9 a.m. to 1 p.m. on Saturday at the former Celoron School, 200 Dunham Ave. In addition to a 1.5-mile walk, which begins at 10:30 a.m., the event will feature live entertainment by Marty’s Bubblegum Machine, music, games and activities at the Kidszone, face painting, Lauren Miller’s Bounce Chautauqua houses, Harvey the balloon man, a Chinese auction, a cake auction hosted by Steve Waterson and Mark Goshgarian, Sparky the Dog, food, refreshments and lots of autism awareness building opportunities.
According to Tess Kerzner, children services coordinator for the TRC, the walk by the lake is pleasant, scenic and safe. And, she hopes that those who have been affected by the disorder, and even those who haven’t, step up to support this community event.
“I would love to have more members of the community whose lives have not been touched by autism to come and learn about it and start talking to some of the parents who have children with it,” Kerzner said.
“I hear from a lot of parents that the community still doesn’t get it, and people think there is bad parenting going on or that the child is unruly,” Kerzner. “They don’t understand that this is a neurological disorder, and that these parents are working 24/7 to make sure their child is able to get through each day. The Resource Center works with families so that these kids can be in society as other typical kids are and not be judged based on their autism.
“Temple Grandin has autism, and look at all the accomplishments that she’s made and the books that she’s written,” Kerzner continued. “There are people who grew up shunned that still made it through despite the difficulties they faced with their disabilities before autism became more prevalent in school systems and society. Because one in 88 children are going to be diagnosed with autism, you’re going to see more and more children around that will be on the spectrum.”
A $20 entry fee is required of walk participants. The fee includes a T-shirt and lunch. However, no fee is required to attend the event for non-walkers. For more information, call 661-1057 or visit www.stepupforautism.com.
The National Institute of Mental Health describes autism spectrum disorder as a group of developmental brain disorders that include a wide range of symptoms, skills and levels of impairment or disability. Diagnoses of the disorder are classified by five pervasive developmental disorders: autistic disorder, Asperger’s disorder, pervasive developmental disorder not otherwise specified, Rett’s disorder and childhood disintegrative disorder. The exact causes of autism are not know, yet research suggests genes and environment play a role.
Symptoms vary, but in general they include social impairment, communication difficulties and repetitive and stereotyped behaviors. Early intervention can reduce or prevent the most severe disabilities associated with the disorders. For more information, visit www.nimh.nih.gov.
Crystal Peelman has participated in the walk for the past three years with her autistic son, Mason, his two brothers, Braydon and Caleb, and her husband, Aaron,
“Braydon and Caleb are like Mason’s protectors, and I think they get joy out of seeing him be accepted,” Peelman said. “I think it also makes them feel good helping the other kids who have a disability. It’s really important for parents of typical children to be there too so they can see kids on the autism spectrum so if they run into someone in public they won’t be in shock. They are all really sweet kids – they are just different than us.”
Julie McCarthy, Newspaper in Education and customer service representative of The Post-Journal, has participated in the walk since its inception with her son, Andrew, a 24-year-old with Asperger’s who works at Truck-Lite and was diagnosed when he was 12.
“Andrew’s issue had to do with making friends,” McCarthy said. “He is highly intelligent, and went to a regular school. His job at Truck-Lite is through The Resource Center, as well as him learning how to drive and going to Jamestown Community College and getting an associate degree in applied sciences through ACCES-VR (Adult Career and Continuing Education Services-Vocational Rehabilitation). TEAM Services Inc. (Transportation, Enabling, Accessibility, Mobility) also helped immensely with taking him to and from college. The Resource Center really has played a huge role in his life.”
Andrew was one of the founding members of the Step Up For Autism Walk, as well as the TRC’s SUCCESS program, which stands for supporting, understanding, changing, coping and everyday social skills.
He loves going to the walk each year to meet up with people, make new friends, and he said he wouldn’t be surprised if some people even swap numbers. He also recently passed his road test and now has a driver’s license.
“Most of us have difficulty expressing ourselves,” Andrew continued. “Some of us show it a little more than others, but we all have a little bit of attitude issues – we get frustrated. Sometimes our frustrations are like a wildfire to say the least.”
Marlene Siriano, a senior court attorney for the Chautauqua County Surrogate Court, participates in the walk each year with her two sons: Matthew and Thomas. According to Siriano, her son Matthew has benefited from TRC’s respite services, and greatly enjoys attending the walk each year. Her family attends the walk and fundraises as Team Siriano.
Matthew, who is now 15, was diagnosed with autism when he was 2. He spent the next five years attending an early autism program in North Tonawanda called “Summit Educational Services.” The program provided about 35 hours a week of in-home intensive, one-on-one therapy, including speech, occupational therapy and applied behavioral analysis.
“Had he not had that program I can’t imagine where he’d be today, probably completely non-verbal – it made a huge difference,” Siriano said.
When Matthew completed the program at about kindergarten age, Siriano decided to return to Bemus Point, where she originally called home. Shortly thereafter she became aware of TRC, which he began receiving respite services from. He has attended the Saturday program every week for several years.
“He’s with a group of other kids who suffer from various disabilities – it’s a fantastic program,” Siriano said. “They take them different places in the community and do different activities with them. He looks forward to it every week – it’s a highlight.”
Matthew’s older brother, Thomas, 17, who is not affected by any form of autism, created the website for Team Siriano, and he has raised more than $1,400.
Several of the other long-time walk participants have formed teams that attend the event together each year. The teams also raise funds for the TRC and the Step Up For Autism Walk via FirstGiving, a website which empowers nonprofits by providing a secure portal for donors. Through the website, the TRC has raised more than $28,000 since 2010. For more information, visit www.firstgiving.com/trcfoundation.
The Step Up For Autism Walk acts to bring awareness to the autism spectrum of disorders as well as serve as a fundraiser. The funds the event raises stay local by benefiting Filling the Gap Inc., a Jamestown based nonprofit organization which partners with the TRC to improve quality of life for community members with disabilities.
One example of how the funds are utilized locally is the TRC’s SUCCESS program. Siriano’s son, Matthew, has participated in the SUCCESS program, and so has McCarthy’s son, Andrew.
Michelle Tingue, who first got involved with the TRC via its parent support groups, also has a son on the autism spectrum. According to Tingue, the SUCCESS program has played an integral role in the development of her son, Patrick, who was diagnosed at 7, and is now 12. She and her son will participate in the Step Up For Autism Walk for the fourth year.
“TRC has helped Patrick tremendously,” Tingue said. “I was going to the parent support group meetings, and they were helping me get through what was going on with my son. The SUCCESS program has helped with Patrick’s social skills, getting along with other children, sharing and other kids touching him.”
The program also benefits the Sibshop program, which is for siblings of children with special needs. For more information, call 483-2344 or visit www.resourcecenter.org.