«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»
During a simple partial seizure, the individual does not lose consciousness but remains awake and aware. Sometimes, the individual can talk normally to others during this type of seizure; other times, he or she is aware of what is happening but cannot talk. Either way, the individual will usually remember later exactly what happened during the seizure. Simple partial seizures can affect movements, emotions, sensations, and feelings in unusual ways.
For instance, the individual may have uncontrolled movement in any part of the body, or he or she may have sudden feelings of fear, anger, or even joy. Simple partial seizures can also produce sensations in touch, hearing, taste, and smell, such as sensations on the skin; unusual hissing, buzzing, or ringing sounds; voices that are not really there; experiencing unpleasant tastes and strange smells;
and, perhaps most upsetting, seeing things in distorted ways. Simple partial seizures do not require any special response from others, except to recognize what is happening and to be supportive.
A complex partial seizure affects a larger area of the brain and can affect consciousness. During this type of seizure, the person cannot act normally and is not in control of his or her movements, speech, or actions. The person will not know what he or she is doing and will not remember what happened during the seizure. People experiencing this kind of seizure may appear to be conscious because they are on their feet with their eyes open, but they will not be able to move and will be in a trance-like state. The person may be able to speak, but his or her words will be unintelligible. Complex partial seizures can affect any area of the brain, but they often affect one of the two temporal lobes. Therefore, the condition is sometimes called temporal lobe epilepsy or psychomotor epilepsy.
217 Hidden Disabilities (Chronic Illnesses)
When someone is having a complex partial seizure, it is important to do the following:
• Reassure others by explaining that the unusual behavior has been brought on by a seizure and will end in a few minutes.
• Remove anything that might injure the person having the seizure.
• Do not restrain the person because doing so may produce an unconscious aggressive response.
• Guide the person away from anything that might be dangerous, like a busy street.
• If the person seems agitated or belligerent, stay back from him or her until the episode has ended.
• Be reassuring and helpful as the person’s awareness returns because he or she may be confused, depressed, irritated, agitated, belligerent, or drowsy after the seizure is over.
• Time the duration of the seizure. If it lasts longer than a minute or two, get medical help.
Although partial seizures affect people in different ways, these
characteristics are common:
• These seizures do not last long, only a minute or two, although the person who had the seizure may be confused afterward and need a lot of time to recover.
• Except in rare cases, partial seizures end naturally. The brain seems to have its own way of ending seizures safely.
• These seizures cannot be stopped, so the most effective response is to protect the person from harm and let the seizure run its course.
• Partial seizures are not dangerous to others because the person experiencing the seizure is too confused and unorganized to threaten anyone.
Heart Conditions. Two types of heart disease can occur in children: Congenital heart disease or defect is present at birth, and acquired heart disease develops during childhood.
218 Welcoming Children Acquired heart disease is rare in children, but it can result from damage due to an infection such as Kawasaki disease or rheumatic fever. Kawasaki disease is relatively common in the United States and is a major cause of heart disease in children. It is more frequent among children with an Asian American background but can occur in any racial or ethnic group. One in five children who develop this disease will experience damage to the heart. Rheumatic fever is an inflammatory disease that can attack anyone but usually occurs in children five to fifteen years old. If a rheumatic heart disease develops, it will last for life.
A congenital heart disease or defect occurs before birth when the heart or vessels near the heart do not form properly. Most problems with the heart develop soon after conception, often before the mother is aware that she is pregnant. Thus, there is nothing the mother could have done to prevent the defect. In fact, in most cases, it is not known why the defect occurred. Children with congenital heart problems can usually lead normal lives, although their activity may be limited. Routine medical care is important for these children, who will get through most childhood illnesses as safely as other children. Children with congenital heart defects usually survive into adulthood.4 Juvenile Arthritis. The term arthritis, which means “joint inflammation,” is a general term that refers to more than one hundred rheumatic diseases.5 These diseases affect the joints and can cause pain, swelling, and stiffness to other supporting parts of the body, such as the muscles, tendons, ligaments, and bones. Some rheumatic diseases can also affect other parts of the body, including internal organs.
Children can develop almost all the types of arthritis that affect adults, but they most commonly develop juvenile rheumatoid arthritis (JRA). JRA usually starts before age sixteen and is characterized by joint inflammation and stiffness for more than six weeks. The signs and symptoms of JRA vary from child to child and even from day to day in the same child. It can be a mild 219 Hidden Disabilities (Chronic Illnesses) condition that causes few problems, or it can be very persistent, causing joint and tissue damage. In severe cases, JRA can produce serious complications.
Lupus. Lupus is a commonly occurring chronic autoimmune disease in which the body’s immune system loses its ability to discriminate between foreign substances (such as viruses and bacteria) and its own cells. As a result, the body makes antibodies directed against itself.
Lupus can affect any part of the body, but people usually experience symptoms in a few organs. These symptoms can range from mild to life threatening and often mimic those of other less serious illnesses. At times, lupus can be in remission. The most common symptoms of lupus are achy joints, frequent fevers of more than 100 degrees Fahrenheit, arthritis, prolonged or extreme fatigue, anemia, kidney dysfunction, pain in the chest upon deep breathing, skin rashes (particularly a butterfly-shaped rash across the cheeks and nose), sun or light sensitivity, hair loss, abnormal blood clotting, Raynaud’s phenomenon (the fingers turn white or blue in the cold), seizures, and mouth and nose ulcers.
Children are generally not diagnosed with lupus until the disease is well developed. This means that they have often been ill for a long time and are more likely than adults to have significant internal organ involvement. Therefore, aggressive therapy is usually required soon after a child is diagnosed. The course of lupus is unpredictable, so it is difficult to know the outcome for an individual child. However, many children do very well.6 Discussion According to the National Center for Chronic Disease Prevention and Health Promotion, chronic illnesses such as heart disease, stroke, cancer, and diabetes are among the most prevalent, costly, and preventable of all health problems.7 Each year, they account for 70 percent of all deaths in the United States and more than 220 Welcoming Children 75 percent of the $1.4 trillion in medical costs. These numbers could be reduced substantially if more Americans would commit to good nutrition, physical activity, and avoiding tobacco.
Eliminating the exposure to toxic substances in the home and environment would also help.
As ministers and educators in Unitarian Universalist congregations, we can help with the prevention of chronic diseases in any number of ways. For example, we can disseminate information on the beneficial use of environmentally safe cleaning and gardening products and make sure our own facilities are environmentally safe and toxin free. In addition, we can convey to our children the importance of healthy eating and physical exercise as well as the need to take care of our environment. And we can offer programs for all ages on how to enjoy physical, emotional, and spiritual health.
Ministering to Families The parents of children with chronic illnesses are often stressed financially and emotionally. The medical costs of treating these children can be astronomically high, and coping with a chronic illness day in and day out can take a serious emotional toll.
Some parents and children will become engrossed in a constant struggle for health, and some will accept and find joy in living. Their outlook and degree of acceptance will change with the course of the illness—from times of remission to times of flare-up.
The parents may need extra emotional support at those times when their child is struggling the most. When he or she is in the hospital, for instance, find ways to help the parents and family, such as delivering meals, cleaning house, caring for siblings, and providing transportation.
chronic illness and a learning disability or mobility issue, refer to the appropriate chapters in this book.) Nonethelesss, it is important for religious educators and teachers to know who these children are, to be aware of any restrictions on their participation, and to know what to do in the case of a medical emergency. Be sure to get this information from parents at registration and follow up with them as needed.
Joanne Giannino, a former director of religious education at First Parish Church in Bridgewater, Massachusetts, shares her
experience in church as the mother of a chronically ill child:
My son has diabetes. He must take insulin every day so that his body can absorb nutrients. A side effect of taking insulin is that he has episodes of low blood sugar, where he may lose consciousness or worse. I share this information with his religious education group leaders, post warning signs on the wall of his room, and have food and other supplies he may need available, including a glucagon shot.
In a casual way, Andrew lets others know about his illness.
However, we as his parents have educated the congregation about his needs through sharing suggestions for snack (low sugar is best) and asking for pledges each year for the walk for a cure. We now put directions about Andrew in front of the group leader’s curriculum that say: “Andrew is in your class. He has diabetes. If you notice XYZ, please come and get either his father or me. We will be in ABC...” This procedure paid off recently, when the teaching team recognized that Andrew was low and unresponsive. They found me immediately, and I was able to get to Andrew early enough to avoid invasive treatment. I am so grateful for my church family and their diligence.
We also have a new child in our group with peanut allergies. His mom has an epi-pen with her at all times. We will let the teachers know about this the same way we have informed them about Andrew. Communicate, communicate, communicate.
222 Welcoming Children Children with chronic illnesses will also benefit from the support and understanding of their peers. Sharing information about a child’s chronic illness will not only help that child feel more secure and welcome but also provide a positive growth experience for all the children in the program.
Chronic illnesses often forces children to lead highly structured and restricted lives—always watching what they do or what they eat. Being able to just hang out with friends and relax may be one of the best ways they can renew their spirit. Our faith communities can be places where all children are accepted for who they are.
ConclusionFar too often, the institutions created to teach and care for our children deny them their inherent worth and dignity, their full humanity. And while we have made significant progress in the treatment of children with disabilities, many practices still exist that limit their full participation in society and that affect how we treat all children. Children with physical or cognitive limitations are still excluded and misunderstood. Energetic children are often labeled and medicated instead of helped to develop the spiritual and emotional skills they need to navigate life’s stormy seas. The emphasis on standardized testing in schools encourages teachers to “teach to the test.” Rote learning threatens to take the place of creative thinking, leaving many children bored and uninspired. Emphasis on the outcome of one standardized test also means that more children will be labeled and placed into special education. The different learning styles and needs of children are too often ignored.
This book is organized by the diagnostic labels assigned to various physical limitations and disorders in an effort to explain the struggles these children face and to suggest ways to minister to them with understanding and creativity. I know that in a chaotic world, there is a need to categorize in an effort to find clarity and a way to heal. Finding the correct diagnosis to troubling behavior can bring relief and understanding to years of pain and confusion.
The Education for All Handicapped Children Act was groundbreaking legislation that finally made education available for chil
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dren who had been excluded from classrooms and left on the margins of society. Labeling is an unfortunate necessity that allows these children to receive the special resources they deserve.
Yet have we gone too far? Labeling many facets of behavior as disorders or disabilities means that the range of what is considered normal is shrinking. Would Albert Einstein or Thomas Edison be considered normal under today’s standard? If Einstein were a child today, he might well be diagnosed with dyslexia and Asperger’s syndrome. Edison might be labeled as someone with attention-deficit disorder. Both would probably do poorly in our schools today, which emphasize teaching to a standardized test. In fact, Einstein dropped out of school because of his difficulty with memorization and tests.