By: Molly Fullam
Each speaker had a different story to tell and different advice to offer, but all had one trait in common — they are parents of teenage children with disabilities.
Three parents offered their personal experiences and advice to other parents at the “Family Perspectives on the Challenges of Teenage Children with Disabilities” seminar, which was held by the Florida Center for Inclusive Communities at USF’s College of Behavioral and Community Sciences on Wednesday.
The speakers touched on the topics of healthcare, post-secondary employment, and social relationships.
Nila Benito works as a child and family studies coordinator at the center. She has two sons with autism, 20-year-old Vincent and 19-year-old Joseph, and spoke about their employment opportunities.
“I knew from middle school that Vincent would be self-employed,” she said.
She said she used “Discovery,” a program designed to help disabled people find their niche, to try to find Vincent a job. However, she advised parents to avoid similar programs because they do not provide the proper support.
What really makes a difference in the search for employment is strength and support from the family, she said.
“We actually found that Vincent’s niche is (stocking vending machines),” Benito said. “He is almost independent with everything except counting the money.”
She said Joseph is in high school and is more academic then his brother. Day programs in the classroom have proved to be successful, however Benito said she is still trying to figure out what profession Joseph would like to enter.
The second speaker, Janet Hess works for FloridaHATS pediatrics in adolescent medicine. Her daughter, 17-year-old Hayle, had brain surgery when she was four months old for hydrocephalus — an accumulation of brain fluid.
Because of her condition, Hayle developed significant learning disabilities such as memory issues and speech disorders.
When it comes to healthcare, Hess said it is important for parents to think about their child becoming self-sufficient and independent before they reach the age of 18. Hess said she has worked with Hayle for years to get her to take medicine, sign in at appointments and give receptionists her credit card for payment by herself.
Preparing a child for their next steps when dealing with healthcare is crucial, she said.
“One thing I have found with her, which is part of her disability, is being very literal, and preparing and talking through things,” Hess said. “And trying not to have surprises along the way.”
Janet Atkinson, who also spoke Wednesday, works in Family Support and O0utreach Services. Her 18-year-old son Taylor has cerebral palsy and autism and suffers from seizures. Yet regardless of disabilities, Atkinson said teenagers are still teenagers and yearn for social relationships.
“I let him go to a Christian camp,” she said. “He made friendships. We just went to a fundraiser last week, and the girls came running out of the kitchen saying, ‘we love him.’ They really meant it.”
It is important for children with disabilities to interact with others and not remain sheltered, she said. When Atkinson hired a behavior specialist to work with Taylor, she learned that he interacts best with people older than him.
Dee O’Neill, a parent of two children with special needs and a family support coordinator for a non-profit children’s mental health organization, came to the seminar because she knows the speakers and respects their perspectives.
O’Neill said she appreciated their honesty and home spun advice.
“As parents there is no guidebook on how we do this,” she said. “So we learn from others.”
