Author: Darlene K. Sekerak, PT, PhD
Kristin is four years old and attends a church affiliated preschool program. Her family adopted Kristin when she was two and is devoted to her. She is an only child. Kristin is sociable and out going, loves ice cream and listening to stories read aloud, especially stories about dragons!
The preschool program Kristin attends serves typically developing children and children with special needs. Kristin has an unusual form of severe dystonic quadraplegia that interferes with postural control and movement. She requires support to sit and has difficulty with control of her arm and leg movements. She uses a large stroller that she is beginning to out grow for mobility and has a standing frame and modular chair at the preschool. She uses an augmentative communication system and enjoys work at the computer.
Recognizing that the stroller is not meeting Kristin's mobility needs and that because of growth some new form of chair will need to be acquired for Kristin, the physical therapist suggested consideration of a motorized wheelchair. The occupational therapist, speech pathologist and teacher are excited about this suggestion but no one is more excited than Kristin. The occupational therapist believes that a switch modification would easily allow Kristin to learn to operate the chair.
The physical therapist approached Kristin's mom about the idea of a motorized wheelchair and was surprised at Mon's reaction to the idea. She seemed surprised and unhappy. They agreed that maybe both parents and the team should meet to discuss options for a new chair for Kristin. At the meeting, Kristin's Dad was very quiet. Mom shared her concerns that Kristin was growing up too fast and that she was not ready to think about a wheelchair, let alone a motorized chair. With further discussion, Mom agreed that it was time for Kristin to move out of the stroller and that a wheelchair was necessary. She was resistant to the idea of a motorized chair because she was concerned that Krsitin would not be able to learn to control the chair independently. The occupational therapist assured her that Kristin was capable of this skill. Mom then stated that she did not think that Kristin was ready for that much independence. The teacher suggested that Kristin needed independent mobility to continue her social and emotional growth, especially given her high level of cognitive and social skills. The physical therapist suggested that Kristin had been ready for independent mobility since she was 12 months old.
Finally mom admitted that she was still reluctant because she and her husband had just signed a contract with a builder for a new multilevel home - her dream home. She could not imagine how they might manage a wheelchair, especially a motorized chair in the home they had designed. The team was somewhat taken aback by the news. It was unsettling to them that Kristin's parents, who are devoted to Kristin and who had been so involved in her education and medical care, would have not considered the implications of a multilevel home for Kristin's future needs. The physical therapist was clearly irritated but did her best to understand. Mom was teary-eyed. She tried to explain that she wanted what was best for Kristin, but she also wanted her dream home that they had been planning and saving for for years. There was clear tension between the team and Mom. Dad seamed caught in the middle. The physical therapist suggested that maybe everyone needed time to rethink the options and attempt to find a solution that would allow more mobility for Kristin without sacrificing Mom's dream home.
After a few weeks, Kristin's parents contacted the teacher and agreed to proceed with a wheelchair consultation to learn more about the options available to Kristin. They had checked with their insurance company and learned that their policy would cover most of the cost of a motorized chair with sufficient justification by the physical therapist. They were also committed to continuing with plans for the new house and accepted the fact the Kristin would have limited use of her chair at home. The occupational therapist offered to review the house plans to see if perhaps a few minor modifications might increase accessibility for Kristin. Mom and Dad also agreed.
Within six months Kristin had her new chair and was motoring around the preschool safely and functionally. She immediately showed parallel gains in language, cognitive, and social skills. Mom had resisted any changes to the original design for the new home. Kristin was using adapted seating on each level and Mom or Dad were carrying her up and down the stairs as necessary. Mom and Dad were satisfied with the arrangement and Kristin was happy to have her chair for preschool and community use.
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