On most days, Henry is a student at a school for children with multiple disabilities. He has a diagnosis of cerebral palsy/spastic quadriplegia. His method of movement consists mostly of being pushed in a manual wheelchair. He spends much of his time in side lying or prone over a ball, while receiving respiratory treatment to help keep his lungs clear and his oxygen levels up. He receives nutrition and hydration through a g-tube and requires physical assistance to perform all ADLs. He is non-verbal; his accuracy and efficiency with the use of an eye-gaze communication device are improving, but this continues to be a difficult process for him.
On most days, with the support of his therapists, teachers, parents and caregivers, Henry struggles to actively participate in life. But today is different. Today, Henry is an athlete. He is a power soccer player. The other players on the Blue Flame power soccer team see him as that: an athlete, a friend, a teammate. nothing more, nothing less.
Power soccer is a modified form of the sport in which players with disabilities use their modified power wheelchairs to 'kick' a ball. Guards are mounted to the front of each player's wheelchair, protecting both the player's feet and footrest, but also providing a flat surface with which to 'kick' the ball. The sport uses a larger ball and indoor-soccer sized goals.
Wheelchair users around the world are discovering this new sport. A quick internet search will yield many videos of teams participating in this sport, including a U.S.A. national team competing internationally. Upon discovering power soccer, the staff at The Center for Discovery in Harris, N.Y., where Henry is a student, decided this would be a great opportunity to bring fun into our extensive power mobility training program.
For the past year, Henry has struggled to learn to use a power wheelchair. In order to provide him with some means of mobility, a wheelchair was adapted with an alternative switch access system from Adaptive Switch Labs (ASL). Henry used an ASL head array, which consists of 3 proximity (electronic) switches to maneuver the power wheelchair forward, left and right. Bringing the head back against the middle (headrest) pad moves the chair forward. Turning or leaning the head against the left or right directional pads executes turns. To simplify the process at this stage, reverse was not used.
Henry demonstrated too much extensor tone throughout his arms, so we were unable to use his hands as an access site for driving. He demonstrated the most controlled movement with his head, but his postural patterns often prevailed, making controlling the power chair momentarily successful but laced with difficulty in turning and stopping.
It is often at this point, I believe, that the therapist and client experience feelings of hope which slowly shift to disappointment, and they move on to other activities. However, this is where changing our point of view from independence to cooperative participation allowed us to continue seeing the power wheelchair as a learning tool full of possibilities.
Often, our clients need a vision, a sense of purpose and motivation in order to more powerfully internalize the neural interconnections of learning. Despite his inability to independently control the power wheelchair, Henry joined the newly formed power soccer 'league' at The Center for Discovery.
This top-down approach to functional power mobility allows Henry the intense experience of using the chair to participate in a fun-filled leisure activity, which further motivates him to continue learning to use the chair. Experiencing the intended outcome in a way which is fun and successful, will give Henry a better understanding of the areas he needs to work on.
In other words, we provided Henry the experience of 'purpose' first, then proceeded to break down the specific skills and components. This is the opposite of a bottom-up or developmental approach in which the client works on basic skills, increasing in complexity until independence is achieved.
Enabling Henry to participate in power soccer without the necessary 'driving' skills required a cooperative approach with the help of his therapist. Henry continued to use the ASL head array, but only using the 'forward' switch. When focused only on 'stop' and 'go,' Henry was mostly successful. Using a power wheelchair with a mid-wheel drive configuration allowed the therapist to follow behind Henry using the push canes to steer him. We call this process active assistive driving.
On game day, Henry's parents showed up to the event with family members and cameras, just like they do with his sibling's sporting events. With the help of his therapist, Henry hit the court with his friends. He even scored one goal, prompting his teammates to cheer, his opponents to 'boo,' and the crowd went wild!
Does Henry know he requires the help of his therapist to play power soccer? Does his family realize he is not doing it independently? Do the opposing players realize this? Of course they do. But no one seems to take offense. They realize this process will only further Henry's desire to become a more proficient driver.
Within several weeks of participating in the power soccer league, Henry began to make great strides in controlling both the turning and stop-and-go components of driving. He now uses his left foot to activate the stop-and-go movements, while he is able to access turning with his head using the ASL head array. He is now able to manage a large space, like the gym, with minimal assistance. As a teenager with his own agenda, Henry is always motivated to participate in power wheelchair training.
Mobility as a Learning Tool
At The Center for Discovery, we believe power mobility is a uniquely motivating resource for individuals with significant disabilities. Unfortunately, power mobility is typically seen as a means of mobility reserved for individuals with high cognitive skills and significant physical impairments. This view is the result of how we often view power mobility a means for independent mobility only. The concept that individuals must achieve a certain level of independence in using a power wheelchair is further enforced by third party payers, who only want to approve power wheelchairs for individuals capable of using them independently. However, once we remove the concept of independence from power mobility, it opens a new world of possibilities for this powerful learning tool.
A power wheelchair, when adapted with a simple single switch, can be a great way to learn cause and effect at a very basic vestibular/sensory level. While we often teach the concepts of cause and effect through simpler and safer means, such as toys, communication devices, computers, etc., the immediate and consistent multi-sensory feedback of a power wheelchair provides a much greater learning curve. Here are a few ways of using a power wheelchair with the purpose of learning:
- Adapt the power wheelchair for use with a single switch and let the client control the 'stop and go' movement while the caretaker controls the turning and navigating. This is a huge leap forward from being a passive passenger in a manual wheelchair. This also allows the caretaker to walk side by side with the individual, increasing the opportunity for engagement, conversation, eye-contact and cohesion.
- Adapt the chair with 2 switches to control only turning/spinning. This can be a great alternative to the motion your clients often crave when on a platform swing. Think of it as a powered platform swing where the driver can control the spinning component. This method also decreases the anxiety often associated with driving as it decreased the possibility of 'crashing' into objects.
- Provide the client the ability to control turning as described above while the caretaker uses a 3rd switch to control forward movement. Work cooperatively to navigate an area.
- Provide your client a combination of switches, allowing you to better assess the form of motion your client craves most. Use this motivation to build more switch access sites. You may be surprised how quickly someone with severe motor impairments will develop new skills when given movement feedback.
- Use multiple switches and access sites to vary the methods of control, in order to promote cognitive 'plasticity'. Note: while this has therapeutic benefits, it should be used cautiously with learners working hard on developing functional driving skills, as consistency is an important aspect of learning to drive.
The possibilities are endless and can greatly enhance your client's ability to integrate and add greater purpose to their existing movement patterns. Adapting a power wheelchair to use alternative access can be tricky. Contact your local vendor or recruit the help of a power mobility specialist.
As we saw with Henry, it becomes easier to build new movement patterns when your client begins to develop the cognitive processes associating switch access with movement through space. After beginning to learn the 'stop and go' movement patterns with his head, Henry quickly learned to use his foot to access those same movements. Now he can focus on using his head for the turning component only, which has allowed him to become a much more functional driver.
Henry had no time to wait for the bottom-up course of action to take form. He needed to participate, feel the joy, and be a part of the action, from the start. Cooperative participation between Henry and his therapist meant that while he was less independent in the activity, he was able to experience the benefits and the emotions which further motivate him to focus on developing those skills.
John Damiao, MS, OTR/L, ATP, is an occupational therapist, assistive technology professional and Power Mobility Assessment and Training Coordinator at The Center for Discovery in Harris, N.Y. For more information, or AT-specific fieldwork opportunities, contact firstname.lastname@example.org.