«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»
Motor Disabilities Being a person with spina bifida has meant many things to me. Having spina bifida has meant that I have to work twice as hard at things that come naturally to some people, such as trying to walk, to take care of myself, and to make my own living. These things have been hard at times, but not nearly as difficult as trying to get other people to see me as “normal” and treat me as they would anyone else.... As a child, it was hard to go out in public and be stared at by people and pointed at and talked about by kids, but I learned to just go on as if I didn’t hear or see them, because I knew the kids didn’t know any better, and neither did the adults, if they had never been around someone with a disability. I learned to ignore all that, but it didn’t make it any easier.
—Adrian Sandler, Living with Spina Bifida Children with visible physical impairments are confronted daily with the reactions of the people they meet. Sometimes, as Adrian Sandler points out, the reactions are not kind; at best, they are rude and uninformed. Regardless, facing these reactions is part of the daily existence of children with physical disabilities.
When we have children with physical disabilities in our churches and religious education programs, we are immediately confronted with the challenge of inclusion. Our job is to create a safe haven for these children—a place free from the stares and the constant challenge to prove themselves; a place where they are 179 180 Welcoming Children accepted for who they are and not defined by their physical limitations; and a place that offers a healing ministry in which the children feel safe, secure, accepted, and understood.
Description There are many types of motor disabilities and as many or more causes. Orthopedic impairments affect the muscles, joints, and bones and thus affect movement. Sometimes, their cause is unknown; other times, they are caused by trauma or disease before, during, or after birth. Genetic defects eventually lead to neuromuscular disorders, such as Duchenne muscular dystrophy. Accidents during childhood are another cause and can result in spinal cord and traumatic brain injuries.
As with any disability, the severity of a motor disability can vary widely. Also, some children have multiple disabilities that require multiple medical and rehabilitation treatments. The common element of all motor disabilities is that they impair movement, which necessitates the use of crutches, braces, or a wheelchair. A small number of children with motor disabilities also have other conditions, such as learning disabilities, seizures, mental retardation, heart conditions, attention-deficit disorder, and hearing or visual impairments. The most common types of motor disabilities are discussed in the following sections.
Cerebral Palsy. This term is used to describe a group of motor disorders that result from damage to the brain before, during, or after birth in infancy. The damage affects the child’s body movement and muscle coordination; exactly how depends on what part or
parts of the brain were damaged. The United Cerebral Palsy Organization writes that cerebral palsy is characterized by the inability to fully control one’s motor system:
Depending on which areas of the brain have been damaged, one or more of the following may occur: muscle tightness or spasticity; involuntary movement; disturbance in gait or 181 Motor Disabilities mobility; difficulty in swallowing and problems with speech.
In addition, the following may occur: abnormal sensation and perception; impairment of sight, hearing or speech;
seizures; and/or mental retardation. Other problems that may arise are difficulties in feeding, bladder and bowel control, problems with breathing because of postural difficulties, skin disorders because of pressure sores, and learning disabilities.1 Cerebral palsy is not caused by problems of the muscles or nerves. Moreover, the brain damage that causes cerebral palsy does not get worse, so this is not a progressive disease. Someone with cerebral palsy will always have motor difficulty, however, and secondary conditions, such as muscle spasticity, may improve, worsen, or remain the same. Scoliosis, or curvature of the spine, can also occur with cerebral palsy, and spinal fusion surgery may be needed. It is very common for children with cerebral palsy to have accompanying learning disabilities.
Signs of cerebral palsy usually occur before the child is eighteen months old. The parents begin to suspect that something is wrong with their infant when his or her motor skills develop abnormally or very slowly. Diagnosing cerebral palsy usually involves testing the infant’s motor skills and examining the mother’s and infant’s medical histories. Training and therapy can help improve functioning for people with cerebral palsy. Service animals similar to seeingeye dogs can be used successfully to provide general assistance, such as helping a child balance, pulling a wheelchair, helping a child get up from a sitting or fallen position, retrieving items that are dropped or out of reach, and carrying items for the child.
Neuromuscular Diseases or Disorders. These types of disorders have a genetic basis, are usually progressive, and affect the muscles.
There are over forty types of neuromuscular disorders, but they can generally be divided into three groups: myopathies, or muscle diseases; neuropathies, or disorders involving the nervous system;
and conditions in which changes in the metabolism of the internal tissues of the body result in muscle weakness.2 The public is most 182 Welcoming Children aware of the myopathies, or muscular dystrophies, due largely to the Jerry Lewis Telethon. While the medical causes and symptoms of the many neuromuscular disorders are different, their effects are the same in that the child’s muscles and coordination begin to deteriorate. These disorders also have a similar impact on the family in terms of providing care. For information on other neuromuscular disorders, please refer to Raising a Child with a Neuromuscular Disorder, by Charlotte E. Thompson.
Muscular Dystrophy. Muscular dystrophies are characterized by abnormal wasting and weakness of the muscles. The type of dystrophy is determined by what muscle group is affected or by the distribution of the muscle weakness. The weakness is usually symmetrical, although one side of the body may feel weaker than the other. As with cerebral palsy, scoliosis can occur, which may require spinal fusion surgery. Other tissues and organs can also be affected. All dystrophies are caused by genetic defects, which means these conditions are not contagious or infectious.
Some dystrophies start in infancy or early childhood, and some start later in life. Cases of later onset can be milder. The dystrophies are generally progressive, although there can be periods of arrest. Severe forms can lead to early death, usually from muscle weakness around the heart and lungs. Because the course and severity of the disease depends on the type of dystrophy, it is important to receive a correct diagnosis.3 Treatment should focus on helping the child be as independent as possible while using whatever equipment and aides are needed.
Spina Bifida. According to the Spina Bifida Association of America, spina bifida is a type of neural tube defect, a serious birth defect that occurs very early in pregnancy and involves incomplete development of the brain or spinal cord or the protective coverings of these organs.4 (The term spina bifida literally means “split or divided spine.”) This disorder affects mobility and bladder and bowel control in the same way as a spinal cord injury.5 An 183 Motor Disabilities estimated 20 to 30 percent of the children with spina bifida will have seizures. The extent of motor difficulty is determined by the location of the lesion on the spine. Some children begin to walk with aides but then need a wheelchair. Others can walk without braces but lurch from side to side. More than 20 percent of children born with spina bifida have a clubfoot, meaning that the muscles on one side of the foot are stronger than the muscles on the other. Children with spina bifida are also at increased risk for bone fractures, but they usually heal quickly. Another common problem is contractures, which occur when there is an unbalance of the underlying muscles and tendons at a joint, so that the joint does not have full movement. For children with spina bifida, contractures usually occur in the hip, knee, or ankle. Children with spina bifida can also experience dislocation of the hip or curvature of the spine. Many of the common orthopedic problems in children with spina bifida are best treated with surgery.
Spinal Cord Injury. Most spinal cord injuries in children are due to spina bifida. However, these injuries can also be caused by accidents from cars, boats, bicycles, skiing, and swimming, which can occur at any age. Teenagers are more likely than young children to experience spinal cord injuries due to accidents because they are more likely to take risks. The location of the injury on the spinal cord will determine the nature and severity of the impairment. In general, the higher the injury on the spinal cord, the greater the impairment. Children and youth with spinal cord injuries need therapy to learn bladder and bowel management and to learn to walk with an aide or to use a wheelchair.
Traumatic Brain Injury (TBI). Like many spinal cord injuries, traumatic brain injuries result from accidents and often lead to mobility impairments. Unlike spinal cord injuries, however, TBI can also cause serious cognitive impairments. Some common symptoms of TBI are loss of consciousness, weakness in one part of the body, and difficulty in speaking or thinking. Ongoing 184 Welcoming Children neurological problems include postconcussion syndrome, headaches, seizures, hydrocephalus, and motor impairments leading to the use of braces, crutches, a walker, or a wheelchair. Serious heart and lung problems can occur as well. TBI can disrupt all the body’s systems, and there can be immense variability in impairment and rehabilitation. Moreover, once a child has had a TBI, he or she will be more susceptible to accidents because of loss of coordination and impaired cognitive functioning. Like cerebral palsy, TBI is not progressive. The damage to the brain does not get worse, but the manifestations of damage can change.6 All children with traumatic brain injuries need rehabilitation to help restore the abilities that they have lost. But because every TBI is unique, the rehabilitation plan must be individualized to meet the needs of each child. Most of the natural recovery from TBI occurs during the first year following the injury. After that, the recovery process gradually slows down, sometimes continuing over a long period of time. Extensive hospitalizations and medical interventions are usually required. The learning and behavioral problems directly related to the brain injury are the most common, persistent, and problematic issues in working with a child with TBI.
Discussion When parents have a child with a motor disability, barriers to mobility within the home become immediately obvious. As the child grows and needs to use braces, crutches, or a wheelchair, stairs will become an impediment. Bathrooms will need to be made accessible. Mechanical aides become necessary so the child can accomplish various tasks. Things the child always needs will have to be placed at a level he or she can easily reach. For the entire family’s well-being, the home should be adapted so that the child with limited mobility can be as independent as possible. Autonomy is critical to his or her sense of self-worth. Family members will understandably want to help children who struggle physically, but it is important to encourage and facilitate their independence.
185 Motor Disabilities Federal law requires schools to be accessible to people with physical disabilities. Unfortunately, most other places are not accessible. For instance, friends’ houses are rarely accessible, and neither are many restaurants and other public places. Your church may not be accessible. Even children who are able to walk using braces or crutches will probably have difficulty getting around unless accommodations are made.
Accessibility means more than just physical access. It also means being free from prejudices and misconceptions. It means being accepted, first and foremost, as a person who has many abilities, not as someone who has limitations and impairments. Many people, including some parents of children with disabilities, have handicapped thinking, such that they see only limitations, not possibilities. An accessible, inclusive community sees only possibilities.
Children with motor disabilities have no choice but to live with them. Some do it gracefully, and some do not. Children with motor disabilities can become depressed and/or angry about being different from other children. And since these disabilities are generally quite visible, children may have to endure the taunts of their peers and the unkindness of some adults. Most of the hurtful treatment comes from people who simply do not understand.
Children with physical disabilities do not want people to feel sorry for them. They just want to be treated like other children, with consideration for the things that they can and cannot do.
Ministering to Families While each of the disabilities described in this chapter is distinct, with unique medical problems and interventions, many of the experiences of the children and parents are similar. The constant care and medical expense required to raise a child with motor disabilities can take its toll on the immediate and the extended family.
“Accepting a child’s disability involves the death of a dream,” says Kathleen Deyer Bolduc in His Name Is Joel. She goes on to say, “In all the uncertainty and confusion of grieving for the lost 186 Welcoming Children dream, one truth is unavoidable. Until a parent faces the pain of loss and brokenness, he or she cannot begin the journey toward healing, wholeness, and acceptance.”7 Most parents’ dreams do not include the limitations imposed by a disability. They dream of success in school and sports; hikes with the family; music, dance, or art lessons; and running and playing in the back yard with friends. Suddenly, the parents of the child with motor disabilities see all those visions crumble, and they may find it difficult, if not impossible, to envision any new dreams for their child.