Issues for Parents

Should my child walk or use power?

This is a frequent issue we encounter when new physically impaired students come into the community travel program. It's not so much an issue with kids as it is for the parents. The children would just as soon use the power carts, it's a lot like driving a car, or go-cart, or one of those little electric vehicles that small kids drive on the sidewalks these days. It's just fun.

Also, new kids see older students driving the power carts and want to try themselves. In the community, the children with manual chairs (or walkers with crutches) get left behind, not intentionally, but the kids with power zip all over the place, getting where they want to go in a hurry. Power carts make a lot of sense when we are talking about efficient movement.

We ask parents to make a distinction between walking (motility) and functionally useful movement (mobility). The very deep desire to see a child walk is understandable and undeniable. Physical therapy staff can and will work on techniques that increase the potential for walking. But in the world of power shopping where we are trying to accomplish many things in a day, for practical purposes, power is better than walking for people with physical impairments.

Walking may not be an option for some severely impaired kids (at the present levels of rehabilitation medicine and technology). For these kids power carts are a wonderfully practical invention. Many kids however fall into a gray region where walking may be an option. For these kids (and their parents) a tension develops between the world of rehab medicine and the world of education. The medically oriented approach says in effect that "Muscles need to be used if they are to develop." So physical therapists often insist that power carts reduce the opportunity for children to develop their muscles. Education specialists (including physical therapists working in schools) are concerned with function and argue that a kid will not be efficient when they move through the world doing functionally relevant tasks like shopping or getting from class to class in a timely fashion. This is a debate nobody is going to win and the best response is a compromise.

Think of the power carts as tools, as they truly are. Sometimes we need power tools to accomplish tasks and sometimes manual tools are best. We don't carry screwdrivers in our back pockets as a rule, we go and get our tools as they are needed. Power carts are tools we use when efficiency and energy conservation are the needs. Vehicles of every description are time machines, they get us places faster than our legs could carry us. That's what the power carts are about, saving time when that is a reasonable goal. If efficiency and energy conservation are not the goals, if a slow relaxed stroll is the purpose then use a manual chair or crutches. If the goal is exercise, use the appropriate tool. But have on hand all the tools you need to solve a variety of challenges. Kids who have difficulty walking should have power carts in their mobility tool kit.

The community travel program is a school sponsored curriculum, so we tend to come down on the side of efficiency. I'll argue for that here for a moment, but will also stick with my contention that parents caught in the middle should look to compromise (sometimes use power, sometimes not, don't exclude either). Here is why we need to let the kids use power:

After many years of exercises and grief, some children can "walk." This is a "walking" that is not "normal." It is a jerking, labored effort that takes tremendous energy. The child looks and feels "unnatural." It is an okay method of mobility for short, familiar routes, like indoors in your own house. But for more distant and challenging travel, students need to use sophisticated wheelchair technologies.

We found through experience that kids who "walked" during community travel lessons (or used manual wheelchairs) tended to be exhausted much sooner than kids using power chairs. This exhaustion does two things; it makes the child too tired to concentrate (learn), and less able to make good judgements while moving, thereby increasing the danger element. Community travel lessons last all day and they require lots of movement, going from one end of the mall to the other, crossing wide streets, etc. Unless the kids have power, they become more accident prone and less able to learn as the day (for them) drags on.

There are times during the day, during community travel lessons, when students do get out of their power chairs (those that can) and move about. This occurs in bathrooms, in restaurants, getting on and off transportation, and during group discussion times. We look at each child's individual circumstances and "do the right thing" for that particular student. Most often, the right thing is some degree of power cart use.

Power carts conserve the child's energy while giving them the efficient movement that develops their understanding of the world (sophistication) and gives them a sense of being in control of their life. In other words, purposeful, efficient movement is strongly connected with an individual's intellectual and emotional development. A child's curiosity, exploration, and early play all involve movement, from the subtle eye movements of a child reading to the gross movements of a child engaged in a sport. Enabling children to move efficiently through space and giving them control over their movements is hugely important. Community travel lessons are not just field trips into the community, there are global issues being addressed that are of paramount significance for the child.

Why do I get different advice (sometimes conflicting) from different professionals?

For many reasons. The main difference is that professionals have roles that they understand and fulfill but which are not fully understood by laymen. Often the professionals even use the same words but these words have different meanings depending on the professional education of the specialist. To understand this better it is important to make a distinction between the terms "impairment" and "disability."

"Impairments" are the domain of doctors and other medical personnel. An impairment is damage to a body part. If an eye is damaged then we speak of an eye impairment and look to the eye doctor to address the problem. If the legs are damaged, if some part of the leg (or nerves to and from the leg) is impaired, we look to orthopedic doctors for solutions. Doctors use medications, surgery, exercises, and technologies to try to eliminate the impairment. Doctors try to cure the problem directly. A child has a physical impairment so long as the doctors are unable to completely repair the body damage.

Sometimes, no matter how skilled or dedicated the doctor, there is no present cure. No surgery will totally eliminate the problem, no medication will remove the damage, no exercise is enough to restore or provide "normality." When this happens, the problem is turned over to the disability specialists. These are professionals in the special education setting. Their domain of expertise revolves around tasks. Their job is to circumvent the impairment, to find a way for a person to be functionally efficient, to do tasks, despite the impairment. If a child cannot do a task efficiently, then they have a disability for that task. A child who cannot get from the school bus to the classroom on their own has a travel disability; their travel ability is non-functional, too inefficient to accomplish practical movement. If the student learns to safely and efficiently use a power wheelchair then the disability will be circumvented; they will no longer have a travel disability.

Confusions arise partly because professionals themselves are not clear of their roles. The disability specialists may know a great deal about impairments, but they are not qualified to prescribe medications or do surgeries or undertake physical exercise with the student. Doctors are not disability specialists. They may have an opinion about whether or not a task can be functionally possible, but they do not do the functional assessments or the task training. Both kinds of professionals can make educated guesses about the other's domain, but the final judgements rest with the domain specialists.

Why do parents with handicapped kids fight so fiercely for their children's rights and needs?

I am not a psychologist so this is just my feeling as a special educator and parent. I know that when my three kids entered the public schools, especially the first years, I was powerfully and emotionally concerned about their well being. I think this is just a natural protectiveness that most parents feel. It is intense during the early years and lets up as the children get older and more independent.

When a child has an impairment the parent's emotional response for their young child is awesome. I think that the natural protectiveness is muliplied and intensified. Parents handle this overwhelming emotional intensity in individual ways. All kinds of emotions swirl around; grief, anger, depression, determination of heroic proportions, resentment of the institutions (the schools, the hospitals, the government agencies), a driving force to ensure that everything that possibily could be done will be done.

This energy can bring about needed changes and it can open doors and make the world better for the child. Special education and the laws that mandate it exist because parents with handicapped kids fought for many years to make it happen. The energy that parents bring is awesome, understandable, and effective. But this energy can also be destructive; not good for anyone's physical or mental health. While it is good for parents to understand that their emotions are a normal response, they also need to evolve equally powerful coping and support networks. Otherwise, we end up with divorce, depressed children (missing out on being kids), polarization with the people who should be allies (and part of the support network), and no time for R&R (which, by the way, parents must get).

Related to the intense energy that parents bring, is the problem of overprotection and learned helplessness (or learned dependence). Parents (family members, teachers, clergy, and other helpful souls) must not (unintentionally) demand so many services and so much support for the child, that the kid ends up expecting everything to be done for them. A frequent example of this problem is when parents demand that a full time aide be assigned to their child. What often happens in this case is that the aide's job is dependent on how well they help the child. So they help the child all the time. The kid gets two messages; "I can't do this myself, I'm helpless," and "When something needs to be done, someone will do it for me." Instead of learning independence (self-reliance), the kid learns to be (and feels entitled to be) dependent. Protecting the child requires balance; don't underserve, but don't over-serve (over protect) either. Neither is healthy for the child.

One other emotional issue is important to acknowledge, the normal grieving process. Research suggests that we go through a series of stages when we are grieving a loss. When a child is born with an impairment, when some part of their body or brain does not work "normally," parents fall into grief for all that is lost, for the child's losses, and for their loses. Elizabeth Kubler Ross listed several grieving stages. These include initial denial, anger, depression, and eventually acceptance. How emotions play out depends on individuals. But it is probably unhealthy and not wise to deny these emotions. They may be intense or not, may come in any order, several at a time, whatever, negative emotions should not be denied nor should they be allowed to rule (I know, it's easy for me to say, not so easy to experience; hang in there).

How parents might get involved with community travel lessons

Role One

Parents are key members of the educational team. Like other professionals on the team, they should critically study this curriculum guide, share their ideas with the staff, challenge decisions or teaching styles as needed, and express their emotions. We count on parental input.

Role Two

Parents need to be "tough" with their children. They need to push for independence. Parents should avoid over-protection and learned dependence. They need to have high expectations. They need to push the limits. In the community travel program, we preach these values in a nurturing, good natured atmosphere. Toughness and love are not incompatible. At the same time, we know these ideals are easier said than done. There are good days and bad days. Let's work together, be as consistent and persistent as we can; in the long run good changes will occur.

Role Three

Parents need to set goals for their children. At the IEPC meeting, put in the record what you intend to do during the year to further your child's independence. Work in harmony with us to reinforce the goals and objectives of the community travel program. Take your child into the community. Give him or her weekly homework assignments.