Gene’s Story: Gaining Independence as an Individual with Multiple Disabilities
Gene is a 16-year-old young man who enjoys swimming, music, and helping his dad in the family garden. Gene has low vision, a mild hearing loss, moderate intellectual disability, and cerebral palsy, which affects his speech and movement. Since infancy, Gene’s educational team has included a teacher of students with visual impairments and periodically an O&M specialist.
As a young child, Gene rolled or crawled on his stomach to get to things he wanted. His parents carried him or pushed him in his stroller when out in the community. They would stop and show him items of interest, such as water coming from the fountain at the park or the buttons on an elevator panel to press to get to a desired floor.
As a preschooler, Gene got a wheelchair. Though emotionally this was a difficult event for his parents, they soon came to realize that the wheelchair gave Gene greater mobility. He was able to use his left hand to assist in pushing himself and was better positioned in the chair as compared to the stroller, so he was more attentive to his surroundings, and he began to learn to direct people to push him where he wanted to go.
In grade school, Gene received O&M instruction weekly. The O&M instructor worked with him on how to ask for assistance both with pushing his wheelchair and with locating an item in a store. She exposed Gene to streets and would have him listen and look for traffic and tell her when it was time to cross the street. As part of his O&M program, she took him on a public bus once a quarter to give him exposure to other forms of transportation.
Gene’s parents did similar activities with him at home. In order to communicate with people who were not familiar with his speech, Gene learned to use picture symbols or a small communication book to talk with others. When his dad took him to the garden center, Gene would hand a card to the salesperson with a picture of the flowers he wanted to buy that said, “Please show me where these are. My dad will push me if you take me to the flowers.” His parents involved all three of their children in planning family activities using the bus several times a year. Gene always had a job to do, be it asking the driver if it was the correct bus, paying the bus fare, or pressing the buzzer when they were close to their stop.
Now Gene is learning to ride the paratransit van, a service for people who have disabilities or are elderly, to get to his swim practice twice a week. The O&M specialist worked with his family to get him registered for this service and traveled with Gene using paratransit several times. Gene’s mother also accompanied him on the van from their home to swim practice. Now Gene is able to do this himself as his coach meets him when he arrives at practice. Gene feels tremendous pride in his ability to be able to get to practice without anyone taking him!