Braille Monitor February 2008
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by Duncan Larsen
From Dan Frye: Duncan Larsen is the senior services coordinator at the Colorado Center for the Blind. She has enjoyed a long and varied career in work with the blind. She has worked as an independent living teacher, an orientation and mobility instructor, and a rehabilitation counselor. While serving as a master of all trades, Duncan has developed a substantial body of expertise in working with blind students who also live with brain injuries. During the Medical Issues and Special Populations breakout session held on Thursday afternoon, December 6, 2007, Duncan delivered a thoughtful talk full of specific strategies for accommodating blind students with brain injuries while incorporating them into the full time programs of any comprehensive residential rehabilitation training center for the blind. Here is a summary of what she said:
I have worked in the blindness field for many years, first in Nebraska and then at the Colorado Center for the Blind. Over fifteen years ago I sustained a brain injury from an auto accident. I joined a support group and worked closely with other brain injury survivors in order to learn as much as possible about it. We use this information to help students at the Colorado Center for the Blind who have brain injuries.
Traumatic brain injury (TBI) is defined as a blow or jolt to the head or a penetrating head injury that disrupts the function of the brain. It is important to know that a person does not have to hit his or her head to have a TBI.
The brain weighs about three pounds and is the size of a small grapefruit. It is quite soft, with a Jell-O-like consistency. So, when a person has a TBI, as in an auto accident, the head moves forward and the brain hits the sharp bones of the cranium. As a result there can be bruising, bleeding, tearing or swelling in the brain. If a person has significant swelling in the brain stem, death may occur since that part of the brain controls breathing, blood pressure, and heart rate.
Every brain injury is unique. Each person with a brain injury has his or her own unique set of problems, depending upon the person’s circumstance before the injury, the location of the brain injury, and the severity of the injury.
Brain injury is usually an unseen injury, so it is often undiagnosed. Correct diagnosis is important because brain injury can look like several other things, including depression and chronic fatigue syndrome. A friend of mine was misdiagnosed with depression and was told that she needed to exercise. She was exercising four or more hours a day, but her problems grew steadily worse. When she received the correct diagnosis of brain injury, she was told to rest. Her situation improved, and she is now doing quite well.
Approximately 1.5 million Americans sustain a TBI each year. This is about 2 percent of the U.S. population. Put another way, every twenty-one seconds one person in the U.S. sustains a TBI. If you keep in mind that many brain injuries are undiagnosed, this adds up to a large population of people with brain injuries. Over 50 percent of these are caused by auto accidents, and 25 percent are caused by falls and assaults. The highest injury rates are among males between ages fifteen and twenty-four and those over age sixty-five. When one considers the high number of brain injuries, we can be sure that we will have students at our training centers who are brain injury survivors.
The terms “mild,” “moderate,” and “severe” in relation to brain injury are medical terms only. They refer to the length of loss of consciousness and PTA (post traumatic amnesia). These terms are not applicable in describing the outcomes in a person’s life. For example, severe manifestations may result from a mild injury. I know a woman who had a mild brain injury from an auto accident. She was a very successful attorney but has been unable to work since her accident. Another woman had a severe brain injury as a result of an accident from horseback riding. She works full-time doing research at a university.
Mild brain injury involves little or no loss of consciousness. Neurological changes are often not discernible on a CT or MRI. There are usually cognitive difficulties, especially with executive functioning and fatigue problems. Moderate and severe brain injuries involve loss of consciousness from hours to weeks. Usually both cognitive and physical problems result from the injury.
Many challenges follow a brain injury. All of these can be exacerbated with stress, anxiety, and additional injuries.
Cognitive changes can include a combination of the following: attention and concentration problems; short-term memory problems; difficulty starting or following through on tasks; and executive functioning problems, including multitasking, organization, problem-solving, and decision-making. All of these require the brain to hold several thoughts at once. People can also be unable to comprehend or follow directions. Survivors are often easily over-stimulated by noise and activity. Following an injury, the brain often loses its ability to filter out environmental noise, light, and activity. Our NFB Centers are designed to be thriving, vital programs, but all the activity and noise can be overwhelming for a brain injury survivor.
Physical changes can involve decreased coordination, dizziness, and balance difficulties. Vision and auditory processing problems are common. Survivors can have seizures as a result of a TBI, which can begin anytime within two years following the accident. Fatigue is a big problem for most brain injury survivors. As pathways are shut down following an accident, the brain works hard to build new pathways. Activities that were automatic before may require conscious thought and create fatigue. Generally a person with a mild brain injury is very aware of his or her fatigue level. One with a more severe injury may not be aware of the fatigue. I have friends with severe injuries who go and go until they finally collapse, simply unaware of the fatigue. Speech difficulties are often a problem, including word-finding challenges and even articulation of words. Sleep disorders are common and lead to more fatigue. Headaches are very common.
Emotional and behavioral changes may also occur. Anxiety is often a big problem for individuals with brain injury. This is compounded by withdrawal and depression. If the frontal lobes are damaged, the person may have difficulty controlling anger or aggression. The frontal lobes are the areas that police the brain and keep us from acting on our baser instincts. One student at our center has frontal lobe damage only and is able to concentrate on his classes but has difficulty controlling rage and anger. Problems with impulsiveness, verbal outbursts, and inappropriate social interaction are often present. Lack of self-awareness is often an issue. Generally, the more severe the injury, the less self-aware a person is. Someone with a mild brain injury may have acute awareness of his or her deficits as a result of the injury and be very self-conscious about them.
The most important first step in working effectively with someone with a brain injury is to have some understanding of brain injury in general. I hope this summary will assist with that. A consistent, repetitive, and structured program is most accessible to a survivor. Last-minute changes in routine can really disorient a brain injury survivor. If changes are going to be made, it is much easier for the person to deal with them if given a few days’ notice. It helps to minimize sound and other distractions when working together. Turn the radio off in the office and classroom. Try to have meetings in quiet places without a lot of distraction. It’s helpful to clarify communication when working with a brain injury survivor. At the end of a meeting state what the next step will be, who will do it, and when.
You can also help the person get organized by teaching compensatory strategies. The most effective strategy we have found in our center is to allow the brain injury survivor to take a rest break. It is important to realize that the student can easily become overwhelmed by the intensity and activity of our training centers. Most students without a brain injury can keep going when they are fatigued and eventually get a second wind. A brain injury survivor doesn’t get a second wind. That person needs to create a situation that will allow the brain to rest or even shut down. Generally a student can concentrate much more fully after taking a break. It is important to locate a quiet area in the building, although some people are able to rest outside or while taking a walk. Others need to lie down, and still others can sit–a La-Z-Boy chair works nicely. Usually a break of a half hour or less will be helpful, but this varies from person to person. I have a friend who takes a five minute break every hour. This allows her to keep being productive. I mentioned a student earlier who had problems with controlling anger; he now takes a break every day and is able to control that anger. Teachers report that he is doing very well in his classes.
It is important for the student to realize that he or she probably has limited amounts of energy and therefore has to learn to manage that energy. In addition to taking rest breaks, it’s important to complete difficult tasks when the student is well rested, which means pacing and organizing activities.
The brain is not well organized following an injury, so exterior structuring helps to keep a student organized. Calendars, day timers, and organizers are very helpful. Writing down telephone or other conversations helps a student who may not be able to remember them. It is helpful to write down directions and any other information that a person may want to remember. Writing down the information frees the brain from having to use energy to remember something that could be written down. As you can imagine, Braille is one of the most important skills a blind brain injury survivor can learn. Until a person learns Braille, recorders can be used to hold information such as appointments, telephone numbers, and directions. Some survivors use alarms to remind them to rest, take medications, and a variety of other activities.
I believe that the best place for our blind brain injury survivors to receive
training is in our NFB centers. With the use of some of these strategies, these
students can be highly successful and independent.