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"I Prefer to Alter This Paradigm"
Karen Kangas, OTR/L, on Teaching Very Young Children to Operate PMDs
Children are not small adults.
That is why - says Karen Kangas, OTR/L - treating young power mobility users as if they were adults doesn't work.
"Children who have never had the experience of independent mobility are not going to be successful in assessment and training strategies which have been developed for adults," Kangas says. "Children learn and use mobility in familiar environments, and with familiar adults, and are particularly interested in the mobility not as a skill unto itself, but rather as a means to approach a person or object, leave a situation, explore an environment, and/or touch and obtain an object."
In fact, the initial experience of mobility is typically very different for a child than for an adult.
"Because many therapists and parents still see a powered chair as a 'car' with 'driving skills' needed, they tend to think that pre-requisite skills are needed," Kangas says. "But mobility for a child is a gaining of experience, a way to learn about themselves and the world. it is through the use and discovery of mobility that development can progress. A child needs to be able to move to learn directionality, needs to be able to approach objects and leave situations to learn how to do it. The key to a child's success in use of powered mobility is the need to support and understand that a child needs to explore mobility - not driving - first. Eventually driving skills will be needed, but initially, this should not be the focus in the use of the powered chair."
Creating an Inviting Environment
Power chair controls can be another challenge for young children learning to operate mobility devices.
"As programmability in electronics has improved, and zero-pressure electronic switches have become available, I have found that very young children can readily figure out through exploration what each switch does, and hence can gain control of a powered chair quickly to allow them to explore," Kangas says. "Since each switch only performs one task (one direction) and only performs it at a single speed, the child can readily anticipate its outcome. Yet, powered chairs still come with joysticks. I have found that unfortunately, in many assessment sites, the historical adult paradigm of assessment for powered mobility occurs. This generally prevents many young children from appearing to be 'candidates,' as they 'fail' the joystick test."
Kangas advocates a different approach.
"I prefer to alter this paradigm," she says. "I generally start with head access with electronic switches. I also prefer to work with young children directly in their familiar environments - like at home, in the kitchen or family room. However if this cannot happen, then I want to create a small, close, interesting environment, like at a pre-school, where objects and activity are nearby."
Next step: wheelchair preparation.
"I like to have a small doll who will get in the chair and move it to play," Kangas explains. "The doll is very active in the play activity and happens to move the chair. If this is a first time, I will also have an adult chair available and ask the parent of the child being assessed to get in the chair.
"I will have it programmed to move at a very slow speed. I ask the parent to look around the room to 'find' something they might like to play with or to look at more. I do not have all the switches plugged in, just the turning ones. As the parent becomes comfortable and can tell me what he/she would like to do next, I invite the young child to sit on the parent's lap."
Once the child and parent are both in the chair, Kangas says, they "usually just like to 'go' in the chair and 'go' together. I stand by, but comment on what they pass by and mention items in the environment they might like to explore. I do not comment on their 'driving' at all, but rather keep the focus on the environment.
"Parents, inevitably, can't help themselves and always want to talk about their going. I will mention that they have taken a 'big' step if they go for a bit, and a 'little' step if they only do a short switch hit.
"I then ask the child if the doll can join them, or if the child would like to make the chair go with the parent. They can usually tell me by looking. If they can't, I make a choice for them and tell them either 'The dolly really wants to ride with you' or 'Mom looks like she really wants to try with you.' I then take off the head switches from the back of the chair and bring them around and hold them at the child's or the dolly's head. The child (or dolly) then makes the chair move, just like it was by the adult. The dolly usually wants to go by herself, and invites the child to come with her into a chair that's more their size."
A Chair of Their Own
Once the child wants to try out a chair that's more her size, Kangas says, "I place her in the chair, and we do the same activity we did with her Mom, but in her 'own' chair. This technique works well for children about 24 to 36 months old. I move slowly and work with each child and parent - and dolly - reading them carefully, looking at how we can extend the exploration to more objects, to more switches, and/or to a bigger environment. I like to use the 'forward' switch to take the dolly or Mom for a walk, and we literally do go outside, if possible."
Kangas says she sets up the scenario so the child immediately experiences mobility.
"I place the switches directly at the head, so it is unavoidable for the child's body to NOT make them go. The child then has the experience of feeling the chair actually going, and yes, the child herself is making it go.
"I, the adult, stop the chair. I stop it and tell the child I've stopped it. As the experience continues, I will take a break. At the break, I may change the switches so that the child now has to 'reach' just a small amount to 'find' the switch, thus setting up a natural 'stop' - meaning the 'stop' is now the position of staying in center."
This altered setup, Kangas says, enables her to observe how well the child is understanding the chair, its operation and the environment. "I also can observe the child's body, as it is critical that I have created seating which will allow the child to use her body. This seating cannot be the usual extra strapping in that is frequently provided for children who have disabilities. The child's body must have enough freedom of movement to weight bear at the pelvis and rotate the trunk, so that head, hand and legs can be controlled. I do not strap in the feet, either. I need to be able to observe what is happening to the extremities as the trunk is controlled. Only through trunk control - which comes from pelvic weight bearing, and shoulder girdle and pelvic girdle coordination - can head control or any graded, isolated extremity control be initiated and sustained.
"In short, for the child we need exploration; for the therapist, we need extended periods of observation to determine adequate seating, programming for the chair, and initial access."
For the next step, Kangas says, "I may try the use of switches at the hand, or the use of a joystick. The child now knows what to expect from the chair, and can explore the methods by which the chair moves. This allows me, the therapist, to observe the child's thinking, as well as the child's postural control, as well as the child's experience in using different methods of access for managing a powered chair."
A Different Approach for the Very Young
For very young children, Kangas says, the exploration has to be more direct.
"They are not yet able to watch the parent or a dolly, and need to be placed within the chair, within the activity. Here, too, I generally use head or hand switches. I may place a proximity switch directly in the child's hand, and as they grasp it, the chair moves. If the child does sit up or has difficulty sitting up, I will set up their seat and place a proximity head array - switches are contained within a padded headrest - as their headrest. Where the child's head naturally rests will be the switch I plug in. This may be a switch which turns the chair, allowing us to look around the room, or it may be a switch which moves forward, taking us near an interesting object or person."
In the beginning, Kangas emphasizes, the goal should be less about teaching the child to drive or assessing how he should drive, and more about allowing the child to explore.
"The key is that, in initial assessment, you are not looking for how the child will best operate the chair, but you are instead looking at how can the child immediately make the chair move predictably to explore the environment," she says. "The child must be able to discover immediately what the chair will do, to then help them go get something, get near something, explore. It will be through exploration that the child will gain experience, and then as the child gains experience, the method of how the chair will be used eventually can be determined."
Kangas says that because she works with children "who have very complex bodies," she usually starts with switches as driving controls.
"I usually go switches first, head first - then hands, then joystick," she says. "With some children, I work with all these methods. With some, I only use one method. With others we start in one place, but then move to another. This is very dependent on the child. There is no 'right' way. But how we approach the assessment can certainly prevent many children from having opportunities to learn."
Kangas also favors using head arrays with young children rather than joysticks for another reason.
"The children themselves have taught me this, from me observing their experiences," she explains. "When a head array - head switches - is used to drive, the child's hands are free to get close to things and to approach objects and to touch things in their environment. When a joystick is used, it still is 'in the way' of other activities. The joysticks themselves are still large, or placed in a position that does not allow a child to get up close to a table, right up with other children, or right up to the sink or a drawer.
"If hands are used to drive, then the driver control has to be right in front of them. But when the driver control is at the head, the hands are free to get involved with real play. A child can drive up to a table and play with Play-Doh, and then back up and turn. A child can approach a piano and get right up to it to play. A child can get close to a window and lean forward to peek out. These are all activities that young children I have worked with have shown me that they do. And yet when working with children with joysticks, these activities have been much harder to accomplish."
Finally, Kangas stresses again that treating children as miniature models of adults won't work.
"We must be very careful to NOT use an adult paradigm of assessment," she says. "We need to really understand how young children learn, and we need to make sure that we, as adults, really understand how to create environments that are accessible to exploration, how to program chairs so that they are 'safer,' and we need to know our own very important roles as adults while the child is gaining experience."
This story is an exclusive online bonus to the pediatric mobility story "What Drives Them?", which appeared in the April 2011 issue of Mobility Management.
This article originally appeared in the April 2011 issue of Mobility Management.