«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»
The parents of a child born with cerebral palsy or spina bifida may realize the loss of their dream immediately or after several months of agonizing doubt. The parents of a child with muscular dystrophy most often learn of his or her condition later, in the toddler or grade school years. Traumatic brain injury and spinal cord injury happen with terrifying suddenness, and so does the realization that the child that was, no longer is.
With all of these disabilities, the parents have to contend with the immediate crisis of hospitalization and surgery, followed by complicated secondary medical conditions, conflicting information, a sometimes lengthy period of not knowing what their child will or will not be able to do, extraordinary expenses, and explaining it all to concerned friends and family. In short, the demands are relentless, leaving little time for the parents’ own healing and recovery.
Most parents must face all these challenges while trying to care for and be available to their other children. These children might feel alone and neglected because so much of their parents’ attention is directed to the needs of their sibling. Family therapy is often needed to help everyone express his or her needs and feelings and to help the family find creative solutions to ongoing challenges.
Ministering to the families of children with motor disabilities should involve the entire faith community. Just as congregations offer support when someone is ill or has a death in the family, the congregation can support the family with a special-needs child.
187 Motor Disabilities Children with orthopedic and/or neurological impairments are often in and out of the hospital. These are the times when families need help caring for their other children. A network of church members can be organized to run errands, babysit, arrange transportation, provide meals, and serve as a liaison to the outside world so the parents do not constantly have to communicate information about their child to concerned others. A church support group can also provide parents some time to themselves, particularly when they are feeling most fragile and vulnerable. Finally, church members can volunteer to be mentors, aides, and caregivers for the child when the family comes to church.
It is a sad fact that some of the children with these disabilities will die. For instance, most of the muscular dystrophies result in early death. The loss of a child can be the most painful and devastating experience that parents can suffer. Even if the death is expected, there is no way to completely prepare for the loss. Parents who have spent much of their time and energy caring for their child may feel totally lost as to what to do with their lives once that child is gone.
Consider, too, that with the loss of the child, some of the parents’ friends and supports may be lost as well. Many friendships and support systems develop through caring for their child, and upon his or her death, these important individuals will no longer be part of the parents’ daily lives.
In this time of great loss, we can be most helpful by just listening and holding sacred the memory of the child. When the parents can look past their loss and remember and celebrate what was special about their child, healing can begin.
Ideas for Teaching Three primary issues need to be addressed in our religious education ministry to children with mobility impairments. First, anticipate that the other children in the program will recognize that their peer has a disability, as most mobility impairments are 188 Welcoming Children observable and involve the use of a wheelchair, crutches, braces, walker, or cane. Be sure to discuss each child’s condition positively with the other children in the group.
Second, address architectural and other physical barriers in the church generally and in the classrooms specifically. Work with the child’s parents to fully comprehend his or her special requirements for physical accommodations.
Finally, address attitudinal barriers by providing information and sensitivity training for teachers and perhaps for the other children in the program. These children should know that their peers with motor impairments have dreams, hopes, talents, and the need for friends, just like they do.
Here are other suggestions for successfully including children
with motor disabilities in religious education classrooms:
• Do not assume what children with motor impairments can or cannot do. Ask them what they can do and how they want to be helped. Consult with parents about children’s physical abilities.
• Avoid doing everything for these individuals. Like all children, they need opportunities to develop a sense of accomplishment and competence.
• Find each child’s “island of competence,” described by Robert Brooks and Sam Goldstein in Raising Resilient Children.8 (See page 39.) Depending on the circumstances, the child’s self-esteem may be very fragile. Adapt activities to make sure every child can always be included in some way.
• Do not pity children with motor disabilities. Because these children’s physical impairments are so visible, people tend to imagine how awful they themselves would feel with a similar condition. Even empathy is sometimes expressed in a patronizing manner. These children, like all children, need love, understanding, and encouragement. Instead of adopting the “disability paradigm,” adopt the “giftedness paradigm” and see what is unique and wonderful about the child.
189 Motor Disabilities
• While we should not continuously stare at these children, neither should we totally ignore them. Engage them in conversation;
make eye contact. If they are in a wheelchair, avoid talking over their head or down at them. Also, do not lean on the wheelchair; it is part of their personal space.
• Never move a child’s crutches, walker, or cane out of his or her reach.
• If a child has difficulty speaking, give him or her plenty of time to answer. In particular, do not answer for the child or even finish his or her sentences. Model patience, love, and genuine interest in what the child has to say.
• Some children with motor disabilities do not like to be touched, but in general, a kind touch on the back or the hand is a loving way to assure children that they are loved and accepted. If all the children in the group are getting hugs, be sure the child with disabilities also gets a hug. Do not let any sense of fear keep you from touching someone with a physical disability. We all benefit from human touch.
• Avoid speaking to children with motor disabilities in a tooloud or too-simple manner. Most of these children have normal hearing, so there is no need to speak loudly, and unless you know they have some cognitive impairment, do not assume they will not understand. Speak to them as you do to the other children.
• Likewise, treat children with disabilities the same as the other children if they act out or do not follow the expectations of behavior agreed to in the group.
• Adapt all activities, even physical activities, to include children with motor impairments. If you are stuck for ideas, involve the entire group in coming up with creative solutions. If you cannot find a solution, then do not do the activity. Nothing is more humiliating for a child than watching from the sidelines while everyone else gets to participate. Accommodating each special child’s needs does 190 Welcoming Children not mean limiting the other children’s choices; rather, it helps them all learn what it means to belong to an inclusive community.
• Arrange the room so that it is accessible for a child who uses braces, crutches, a wheelchair, or a walker. Make sure that there is no clutter on the floor and that the child can move easily from one activity to the next without having to go around unnecessary obstacles.
• For sharing or discussion time, instead of sitting on the floor on pillows or rugs, provide beanbag chairs and/or couches, so that a child in a wheelchair will be at eye level with everyone else.
• If there is no elevator to the classroom, move the special-needs child’s group to a room on a floor that will be accessible to him or her.
• If the child has difficulty feeding himself or herself, ask his or her parents and the child how best to provide help. Have a supply of straws available for children who have difficulty holding a cup.
• Provide an aide for a child with severe physical disabilities who needs someone to help him or her get around and participate.
Blindness and Visual Impairments The poets have taught us how full of wonders is the night;
and the night of blindness has its wonders, too. The only lightless dark is the night of ignorance and insensibility. We differ, blind and seeing, one from another, not in our sense, but in the use we make of them, in the imagination and courage with which we seek wisdom beyond our sense.
—Helen Keller, The World I Live In Because most of us can see, we tend to assume that having sight is preferable to being blind. But if we make this assumption when interacting with people with blindness or when ministering to children with blindness, then we will limit their opportunities for connection and learning.
I once worked with a man who was born blind, and he told me a story about being stopped on a sidewalk by someone who shook his hand and told him how brave he was. This had happened more than once. Every time, my friend would laugh and say, “People just do not understand. There is nothing brave about being blind. It is part of who I am. I have no choice but to live with it.” We cannot arrogantly assume that to be sighted is always better. As religious professionals and lay leaders, we can appreciate the unique way in which those who are blind or visually impaired relate to the world. We can respect their difference and perhaps learn to appreciate the world of touch, smell, taste, and hearing.
191 192 Welcoming Children Description The terms blindness and visual impairment do not represent discreet conditions but instead describe a range of impairments, from low or partial vision to total blindness. Usually, someone is considered visually impaired when he or she has severe difficulty completing daily activities without making special adaptations for a lack of sight. Most individuals have some usable vision, and even those who are considered blind usually have some perception of light and dark. Among children with visual impairment, 50 to 60 percent also have other disabilities, such as hearing impairment, mental retardation, or cerebral palsy.1 In general, the term visual impairment refers to any condition in which eyesight cannot be corrected to what is considered normal. That might include the loss of visual acuity (the ability to see objects and detail clearly) or the loss of the visual field (the total area to be seen without moving the eyes or head). Someone is considered legally blind if his or her visual acuity in both eyes tests at 20/200, even with corrective lenses, or if his or her visual field is less than 20 degrees. This does not mean a total absence of vision, however. Low vision describes someone who has a visual acuity between 20/70 and 20/200 with corrective lenses.
There are many causes of blindness and visual impairment, including heredity, premature birth (before the retinas have fully developed), tumors, and head traumas (perhaps related to traumatic brain injury). Diseases such as measles, rubella, diabetes, tuberculosis, meningitis, encephalitis, syphilis, and anoxia can also cause blindness and visual impairment.
A very few children become both deaf and blind at an early age, most often due to meningitis or scarlet fever, diseases that have been virtually eradicated. The most common cause of deafness and blindness in combination today is a genetic syndrome called Usher syndrome, which affects approximately half of the deaf/blind population. Unless someone with Usher syndrome becomes part of a community of people who are also deaf and blind, he or she may lead an extremely isolating and lonely life.2 193 Blindness and Visual Impairments The location, extent, and type of visual impairment often determine the accommodations, adaptive devices, and learning style of the child. A child who is legally blind or has low vision qualifies for special education services.
Discussion A good deal of ignorance and prejudice underlie society’s treatment of people who are blind. Many individuals are uncomfortable being around people who are blind or visually impaired. They do not know how to act, what to say, how to help, or even whether they should help.
Historically, it was believed that the only way people could think was through seeing; therefore, if you could not see, you had to be mentally defective. Even today, our society is heavily dependent on two senses—sight and hearing. When one of them is impaired, we believe it makes the person limited or defective.
In addition, many people fear becoming blind, which may explain our fear of people who are blind or visually impaired. Our language betrays our perceptions. Think about how often we use the word blind to connote a lack of understanding or a state of helplessness, ignorance, or confusion: blind faith, blind luck, blind alley, double-blind study, colorblind, blind spot, the blind leading the blind, blinded by hatred, blind submission, and blind to people’s needs.3 In some respects, society has come a long way in how it treats and educates children who are blind or visually impaired. We know that blind does not mean “unintelligent.” We also know that children who are blind or visually impaired grow into adults who live independent, meaningful lives. Yet prejudice persists. We tend to view people who are blind or visually impaired as either helpless or heroic.