Future Reflections Special Issue: The Teen Years
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by Maureen Lamperis
From the Editor: Maureen Lamperis and her son Joe were among the speakers at the rally following the March for Independence at the NFB convention in 2009. In this article Maureen writes about Joe's challenges and his journey toward independence.
My eighteen-year-old son, Joseph, has been riding the transition train for a long time now. He spends most of his day learning in a classroom for visually impaired students within a regular public high school. When he was diagnosed at birth with bilateral anophthalmia, our main concern for Joey was his lack of vision. We dug in and searched for resources on blindness. We live in the Chicago area, and we were pleasantly surprised to discover many valuable resources close to home. We immediately enrolled Joey in our county's parent-infant education program, and later he attended the school designated for children who need vision services.
Joey easily caught onto the Braille code, and he learned to read early on. He embarked on cane travel with eagerness. However, his social behaviors were often inappropriate, and he struggled with comprehension. We learned that he faced a challenge in addition to his blindness--he had a disorder that placed him on the autism spectrum. When we dealt with blindness alone, we felt that the answers were very straightforward. With this new diagnosis, the answers were far from clear.
As Joe grew older and the time drew near for transition from school to employment, we realized that we had to take a more aggressive approach toward some of his behaviors. Behavior that passed as funny or cute in a child would not be acceptable in the adult world of work. For Joe, the transition train started up as early as grade school.
Preparing for Work
Many of Joe's teachers had the wisdom to look ahead and prepare him for the future by building job-related skills. Joe enjoyed his first work experience when he helped run a movie theater within the school, selling tickets, popcorn, and beverages. He learned to take his job responsibilities seriously because he received a paycheck for prizes at the end of his calculated pay period. Other in-school opportunities included working in the school store, cleaning the teachers' lounge, and making jewelry to sell for a fundraiser. During middle school Joe and his classmates ran a snack shop, dividing up all of the tasks from start to finish. Each job taught valuable skills that Joe needed for his future.
When Joe entered high school, the transition train picked up speed. Planning and teaching focused on the future more than ever. What would Joe like to do? How did we envision him as an adult? We addressed these questions at each IEP meeting. Joe's teachers, transition planner, and job coach worked together to design job-related activities throughout his day. He traveled back to his old grade school to read aloud to the kindergarteners in the vision program. He also answered many questions from students about technology for the blind--his area of expertise. At school he prepared and served breakfast at Breakfast Club each morning during first period.
At times the transition train seemed to bog down, and we felt real frustration. Joe made more than one unsuccessful attempt to take an online computer certification course. It was just too much of a challenge for him at that time. All of us learned from the experience, and it helped us map out some new directions.
Learning Outside School
A great deal of transition preparation takes place for Joe outside school. At home he tries to be as independent as possible. He sets his alarm each morning, showers in a timely fashion, and takes care of personal hygiene before school. He learned to select clothing appropriate for various activities and then to care for his clothes himself. Running the washer and dryer is one of his favorite chores.
Sometimes allowing natural consequences to occur has been more effective than my harping and reminders. Joe knows that the bus driver is unhappy if he isn't ready and makes him wait. If Joe spills the milk he gets an opportunity to practice cleanup. If he leaves his equipment in the wrong place, his baby brother has a chance to grab it. Good cane use minimizes his bumps and bruises. Communicating clearly on the telephone gets the fastest results.
Joe has had more than thirty-five different bus drivers since he started going to school. By now he has learned to give expert directions to his home. He was especially motivated after the day a driver dropped him off and left him at the wrong address!
Safe travel was an important area for us to explore with Joe. For two years Joe participated in FreedomLink, a transitions program for blind teens sponsored by the NFB of Illinois. At the group's monthly meetings he practiced a variety of travel modes within the city. With blind mentors he took subways and elevated trains, city buses, Metra trains, and taxis. He visited many exciting places in Chicago, having fun while he learned valuable tips on daily living. He became more confident in using public transportation, and he subsequently took the train downtown from our suburb by himself!
Two summers ago Joe was hired as part of an Illinois student employment project. His first real job interview was such a learning opportunity! He prepared for every aspect of the experience, from choosing his attire to giving the appropriate handshake. On the job he helped with clerical tasks. He didn't get to use the computer as he had hoped, but this disappointment taught him flexibility and the importance of following his supervisor's direction. Best of all, he independently took a public bus and a taxi back and forth to his workplace. He learned to get from the curb to the revolving doors, from the doors to the elevator bank, and up to his office. He even found his way when the driver unexpectedly left him off at a different drop-off location.
No Polished Ending
At times the prospect of transition seems overwhelming. Sometimes I only see what Joe needs to work on, his areas for improvement. Too often I fail to recognize how far he has come already. When I reflect on the many goals Joe has reached, I am truly amazed.
I have come to realize that the transition process does not have a tidy little beginning and a perfectly polished ending. It begins gradually as the child learns to take on small responsibilities. We are sometimes impatient, wanting to reach our goals immediately. It takes patience and perseverance to continue riding the transition train, but if one stays on track the rewards are great!
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