Ben’s experience is a message of hope for people affected by autism
Published: April 15, 2023 By: Karen Bashkow
Our family of three had moved to central Pennsylvania from northeast Philadelphia. We went from a row home in the city to a single home in a very rural area. We were excited to be living in this beautiful, peaceful area.
Ben was only three years old, but it was obvious that he was delayed in speech, social skills, and fine motor skills. After a brief try at a local preschool, I scheduled him to be evaluated. A kind, gentle psychologist from the local school district told me my beautiful, sweet boy had autism. Other than a recent article I had read in the paper prompted by the release of the movie Rain Man, I was not familiar with autism and what it meant. I remember feeling like the world had turned upside down. I looked at Ben and felt so hopeless and unsure. I didn’t feel better until I realized “this was still the little boy that I loved before I heard that dreaded word, autism.”
Ben would receive the most intensive services they could offer at the United Cerebral Palsy preschool in the closest city, Lebanon, PA. His teacher and I would learn about autism together. He went there for two years. He was very, very active and had difficulty attending for any period to the activities at school.
After UCP preschool, the next steps offered were a classroom for severely emotionally disturbed students or a one-hour bus ride into Lancaster, PA, to the only class for students with autism in the area. Needless to say, the numbers in that classroom were growing and trip like that would have been very difficult for a four-year-old.
We were taking Ben to a speech pathologist in Hershey. She told us about another student with autism that she was working with whose mom investigated options and discovered a program for children with autism that was a statewide program in Delaware. Sounded like heaven. To go somewhere that knew how to teach kids with autism! I didn’t know how we would get to Delaware. I prayed for guidance to take care of my beautiful boy. My husband got a job in Philly and we found a house to rent in Delaware. By then, Ben had a little brother and we all moved to Delaware. Ben was scheduled to be evaluated by the professionals at Delaware Autism Program (DAP) and once his diagnosis was confirmed, he began to attend the program that was then called the Autistic Program.
Ben had a team of people to help him. He began to be able to sit for activities. He used picture exchange communication system (PECS) to request items. He worked on yes and no. The world was still a confusing place for Ben, but little by little he was making strides. He learned many valuable skills. One of the most important things was the vocational skills that his fabulous teacher, Sandy, identified as those Ben preferred and, therefore, he would be motivated to learn. He liked to match, he liked to move around, he liked to shred. If all these skills sound familiar, that’s because those skills are what he uses on a daily basis for his two jobs. Amazing.
Ben was at DAP until he was 21. I knew, due to his challenges, most programs would not provide him services. Students like Ben traditionally transitioned to a sheltered workshop setting. I knew if Ben was in such a setting, the only way he would be able to let the staff know he was not happy would be to “act out” and that was not the life I wanted for him.
I was involved in Autism Delaware, especially adult issues. I began to encourage the organization to develop a vocational program that would enable people on the entire spectrum even those with challenging behaviors to work in the community to allow people to have a fulfilling life. Theda Ellis, then Autism Delaware’s executive director, was on board and interested parents began to meet and ideas began to flow. I was honored to be a part of the process by traveling to programs that looked like they were making their participants happy. We came to realize those things that would make our program a success.
Time was going by and Ben would soon graduate. Theda identified Katina Demetriou who she knew, as an outgoing, knowledgeable person working in a supervisory role in adult vocational services. Katina was excited to be a part of our new program! We were so lucky to get her. Theda wanted everything in order before we began but with encouragement POW&R (Productive Opportunities for Work and Recreation) was ready for Ben when he left DAP. Ben was the first person to be served by this model program.
Ben worked at Dollar Tree for seven years and he also worked at Big Ben Shredding. He now has built on his Dollar Tree experience by working at ShopRite in Stanton stocking the Health and Beauty aisle. He is super focused and once the products are set up, Ben goes through them and places them in the correct places on the shelves. His support person is there to assist him when necessary and to help him if he needs a break to decompress if things in the environment begin to stress him out.
One of the most unique things about POW&R is — not just any person can work with our participants. The person has to treat our family members with respect and have the knowledge of autism that enables them to get to know the person they are with in all their uniqueness. This is why our participants, even those with significant challenges, are successful! Like Ben!!
Ben has a happy and fulfilling life which is my dream come true. He lives happily and comfortably in a Mosaic community home, has two jobs that he likes and comes home to see Mom, Dad, and his brother Brian every weekend! He is treated as a respected, valued member of his community!