Medical trio heads to Ghana
By Lea Kahn, Special writer
In Ghana, some people believe that an autistic child must have been possessed by the devil. Or maybe it’s the parents’ fault if their child is withdrawn and does not communicate with others.
Lawrence resident Lorell Levy set out to change those perceptions during a whirlwind, weeklong trip to Ghana recently.
Ms. Levy was accompanied by two women — a pharmacist from South Brunswick, who was born in the African country, and a physician who serves on the N. J. Governor’s Council for Medical Research and Treatment of Autism.
The three women — Ms. Levy, who is a learning disabilities teacher-consultant in the West Windsor-Plainsboro School District, pharmacist Genevieve Kumapley and Dr. Barbie Zimmerman-Bier — all have first-hand experience with autism. Their sons are autistic.
Ms. Levy said she became acquainted with Ms. Kumapley and Dr. Zimmerman-Bier through connections at St. Peter’s University Hospital in New Brunswick, where her husband is the chief communications officer. Ms. Kumapley is a pharmacist and Dr. Zimmerman-Bier is the chief of developmental pediatrics at the hospital.
But the real bond for the women is their sons’ autism, and their dedication to explaining away the myths and offering help — and hope — to families whose children have been diagnosed as autistic, whether it is in Africa or the United States.
It was Ms. Kumapley who was the driving force behind the trip to Ghana, which took place in November, Ms. Levy said. The pharmacist, who moved to the United States when she was 14, realized there was very little for autistic children when she visited her native country after many years.
Ms. Kumapley went on a preliminary trip to Ghana last year, accompanied by an occupational therapist who co-founded Raising Hope Inc., which is a nonprofit group that aids the survival and needs of orphans and special-needs children. The spin-off was the Nov. 3-11 trip, which involved all four women, Ms. Levy said.
”How can you not go (on the trip)? You have the skills and the knowledge to share, and to do something good in the world. There were people who shared their knowledge with me when my son was first diagnosed with autism. This trip was a natural extension of ‘paying it forward,’” Ms. Levy said.
There were three days of presentations during the November trip, Ms. Levy said. The first day was intended for teachers and the second day was for church leaders and health care providers. The third day was earmarked for parents. But the teachers came each day, she said. They were anxious to learn more about autism and how to help the children.
Ms. Levy said her role was to work with teachers. She gave a presentation on behavioral intervention for students with autism and other developmental disabilities, offering classroom strategies for children with autism.
”Most children do well with visual material because it reduces the anxiety level for them,” she said. “It helps the child know what’s next in the school day. There is a calendar with a symbol and a word for an activity. You put it on the board and the child accomplishes the activity, removes (the symbol) from the calendar, puts it in a container and moves on to the next activity.”
Ms. Levy said she made a calendar for the teachers to take back to their classrooms.
Ms. Kumapley’s role was the “parent organizer,” Ms. Levy said. She made a connection with the parents and spoke of the joys and challenges of parenting an autistic child. She emphasized that parents must be their child’s advocate.
”There is a piece in their culture — mystical — that the devil comes out in your child (if he or she is autistic). We want to parent with the church leaders to help them educate people — that it is not shameful and it is not an indictment of their parenting if the child is autistic,” Ms. Levy said.
Dr. Zimmerman-Bier was the developmental pediatrician. The doctor explained to the attendees how to identify and diagnose autism and “what it looks like and how to tell if your child is autistic,” she said.
”Some of the people traveled eight or nine hours to attend the workshops. They were hungry for knowledge. Ghana is where the United States was 25 years ago (in understanding autism),” she said, adding that the majority of the schools “try” to meet the needs of the autistic children.
”They do not know the number of children with autism,” she said. “It’s hard to convince people of the need for resources unless you can quantify it. There are a lot of children who do not get to go to school, or they do go to school but they are not known to be autistic. It is under-diagnosed and not addressed the way it should be.”
Sometimes, children are asked to leave school, Ms. Levy said. The parents may resort to hiring someone to go to school with the child, just as public schools in the United States often allow an instructional aide to accompany a special needs student in the classroom, she said.
The four women — Ms. Levy, Ms. Kumapley, Dr. Zimmerman-Bier and Ellen Osei, the occupational therapist — stayed in Accra, which is Ghana’s capitol city. They traveled into the countryside and visited the rural areas. They also visited the largest hospital in Ghana, and public and private schools that have classes for children with autism and developmental disabilities.
Ms. Levy said they will continue to visit Ghana, and they hope to expand the team that visits the African country. Ms. Kumapley’s goal is to establish a Haven International Center for Special Education — an outgrowth of My Gateway to Overcoming Autism, which is a nonprofit group co-founded by herself and her husband — in Ghana.
Ms. Kumapley said the Haven International Center for Special Education would offer an autism and developmental disabilities treatment and training center in Ghana, which has a population of 23 million people — and of whom about 150,000 people are autistic.
The long-range blueprint calls for creating a vocational program for adults with autism, and a respite program for families whose children are autistic. The goal is for the Haven International Center for Special Education to be “a model and a beacon of hope for families who feel rejected and ashamed because of ‘unnamed’ and often misunderstood disorders like autism,” she said.
”(Ms. Kumapley) has a vision that is much more than the four of us flying to Ghana for a few days. We are one step closer (to helping people with autism). We took our first step. We laid the foundation for future trips. We have planted the seed,” Ms. Levy said.