Seats That Enable: Special Seating Seminar-Workshop in Culiacan, Mexico
Especially for children with cerebral palsy, having a specially designed seat that helps them sit in a comfortable and functional position, can make a big difference in the child’s development and happiness. Yet most of these children never get such a carefully conceived and enabling seat. To design and build a seat to the needs of the child with a lot of spasticity or deformity is both a science and art. It is a skill that can be learned by working closely and sensitively with the child and her family.
On March 1-5, 1999, Jean Anne Zollars, a physiotherapist and seating expert from New Mexico, facilitated a mini-course in “Special Seating” at Más Validos, a Community Based Rehabilitation program run largely by the parents of disabled children in Culiacan, the capital of Sinaloa state, Mexico. The course was followed by a 2 day workshop held at PROJIMO, in the village of Ajoya about 100 miles away. David Werner was the co-facilitator of the course and workshop.
This Special Seating Course in Culiacan was a marvelous learning experience for all involved: program participants, parents and the disabled children themselves. Despite the large number of persons involved (107 counting those in the post-course workshop), the level of participation was remarkable. Many of the participants already had some experience making seating and other rehab equipment, and plunged in with enthusiasm and creativity. The close involvement with parents and the children themselves made the sharing and learning experience richer for everyone.
The first afternoon of the course began with visits to the homes of several disabled kids whom the Mas Validos team had selected as needing special seats. This was important, because the participants could begin to know the families and to understand the home and community environment in which the children lived. Decisions needed to be made for questions such as whether to add wheels to the seats or to fit seats into wheelchairs.
In some cases dirt floors and rough paths made addition of wheels impractical. Some parents needed to transport their children to school or therapy daily in compact cars or crowded buses. So size and collapsability of the seating was a concern for some families.
The second day was spent learning to evaluate the needs of disabled children. To help learners understand basic anatomy, tilt of the hips, the tightness of certain muscles, and the range-of-motion of major joints, Jean Anne used some excellent home-made teaching aids, including a flexible wooden skeleton designed at PROJIMO. Her best teaching aid was a black, skin-tight leotard (ballet suit) with a human skeleton painted on it.
Once participants learned the basic principles, Jean Anne demonstrated how to assess a disabled child, with the help of the mother and volunteers. Then participants divided into 7 groups. Each group assessed a disabled child with the help of the mother and/or father. The assessment was comprehensive, covering not only physical aspects but also the child’s abilities, potentials, and the wishes and concerns of the family.
The physical examination included supporting the child' s body and hips with the hands (often of 2 or 3 assistants) to find out which position helped the child sit upright comfortably, with reduced spasticity and more control of the body, head and hands.
The third day in the morning, the 7 groups of participants planned the seat they thought would best serve the child and family, according to their assessment. They drew their designs on butcher paper. After lunch each group presented its design in a plenary session. Praise, criticism, and suggestions were solicited from the larger group.
The afternoon of the third day and most of the fourth day were spent by the groups in building the seat each group had designed.
Most of these children had spastic and or flaccid (floppy) cerebral palsy, with moderate to difficult problems sitting. When placed in a sitting position, some would arch up and slide off their seat. Others had such low muscle tone that their heads and bodies would droop forward, even with the chair tilted back. Through experimenting with these children in different positions, providing hand support in different locations on the thighs, trunk, and perhaps shoulders, the groups figured out what sort of seating might benefit each child. Then they set about constructing them. They used mostly plywood and fairly firm sponge rubber. They laminated cardboard (paper-based technology) for wedging and supports. Most of the seats were made with possibilities for easy adjustment, in terms of angle of the seat and back.
The fifth day was spent completing the seats, testing them with the children, and making needed alterations. Then, in a plenary session, each group (made up of participants, the mother, and the child) presented the child in his or her special seat.
Amazingly, almost all the seats made in the course worked well. Most of the children showed marked improvement in sitting. Several could hold up their heads in a better position and use their hands more effectively. Because parents were closely involved in the whole process of assessment, design, fitting and modifying their child’s special seat, they expressed confidence in experimenting with the seats, and according to their child’s response, in modifying them to meet their child’s changing needs over time.
A Seat to Enlarge the World of Jose
Juan de Dios—Riding Straight and Proud!
1. While most children at the Special Seating course, had cerebral palsy, 3 had spina bifida. Of these, the biggest challenge for seating was 5-year-old Juan de Dios. He has a severe deformity of the spine, with a big lump in the [middle of his back.]
2. When we at PROJIMO had seen Juan de Dios 6 weeks earlier, he had a huge pressure sore on the lump on his back, about 10 cm. high and 7 cm. wide. Present for 8 months, the sore had resulted from a plastic body-jacket prescribed to straighten his back.
At that time, we suggested his mother treat the sore with a paste of honey and sugar. We were pleased to see that at the course 6-weeks later, the sore was already almost completely healed. We congratulated both the boy and his mother.
3. Before the course began, Gabriel Zepeda, a paraplegic wheelchair builder with the PROJIMO Work Program, had designed and built a lovely small custom-made wheelchair for Juan de Dios. The backrest he padded with thick foam rubber, with a big hole cut out of it to avoid pressure on his angular back deformity.
In the first trial of the wheelchair, Juan de Dios was frightened of all the people and noisy tools. He began to cry. So Gabriel’s group took him into a quiet hall. Now the boy experimented eagerly with his new wheelchair. He quickly learned to propel and steer it himself. His tears changed into a broad smile of adventure and delight.
4. A design problem. Although the doughnut-like back-rest protected his back lump from future sores, when he propelled his wheelchair, Juan de Dios' body bent forward a lot: his backbone bent like a hinge.
5. To help hold his back in a straighter position, the group made an experimental harness out of butcher paper reinforced by duct tape.
6. After repeated trials to work out difficulties and modify design details, Catalina and Gabriel sewed together an attractive harness (with shoulder straps) out of soft, padded cloth.
7. With his new harness, Juan de Dios is able to move about in a more upright position, with his backbone held straighter. This will help reduce the spinal deformity, let him breath more deeply, and allow more room for his internal organs—which may mean a longer, healthier, more active life.
Sitting upright in his personalized wheelchair, Juan de Dios’ voice now seems stronger and richer. Taking part in this friendly problem solving venture with disabled peers, his self-confidence blossomed.
Innovations at the Special Seating Workshop: Hanging Toys on Overhead Bars for Stimulation and Increased Control
Adjustable toy-bar. DIANA had meningitis as a baby, which left her brain damaged and visually impaired. To help stimulate her different senses and to use her hands, her group attached a “toy bar” to the table on her special seat. Toys that make different sounds and have different textures can be hung from the bar. Slots on the wooden uprights allow the bar to be adjusted up or down, forward or back, to look for the most functional position.
Flying bird. Participants designed this special seat for ALBERTO, a 3-year-old boy with cerebral palsy. For the metal toy-bar, Juan from Piña Palmera in Oaxaca (rear left) made a bright yellow wooden bird with wings that flap when a hanging string is pulled.
Alberto did not have enough hand control to pull the string on the bird. Half-joking, someone suggested attaching the loop of the string to the child’s foot. When this was done, every movement of his foot made the bird flap its wings. Alberto very quickly learned to swing his foot back and forth to make the bird fly. He loved the game and in the process learned more purposeful control of body movements.
Encouraging Disabled Children in the Creative Process
Alex is a friendly, alert, 14-year-old boy with Down’s Syndrome who appeared at the Special Seating Workshop. He has a curious mind and wanted to take part.
During the course, Bob Beyers–husband of Charlotte Beyers who runs Peregrin Productions and is making a video documentary of PROJIMO–loaned his camera to Alex to take photos. Alex was delighted. Other participants gave him different jobs. Here he proudly uses an electric sander to
smooth the table for a special seat.
Young disabled people have a right to learn skills and take certain risks, like non-disabled people.