One of the greatest losses in the life of a parent is when he or she hears the words, “Your child is disabled.” The diagnosis of a child with a disability disrupts the everyday life and plans of the parents, often forever. I know. I can still see the neurologist’s office at U.C.L.A. and hear his words about our one-year-old son, Matthew. “The best I can tell you is for some reason Matthew’s brain didn’t form properly which accounts for the severity of his mental retardation. And at birth something happened which accounts for his Grand Mal seizures. He may become a two-year-old mentally and then again he may not.” We were sent home with those words and our lives changed. We were conscious of the safety needs of our daughter, Sheryl, who was seven years older, but even more so of Matthew. Children are supposed to grow out of their total dependence state. Mathew never did. Children are supposed to learn what not to touch or put in their mouth. Matthew never did. Children are supposed to learn what is safe and what is dangerous. Matthew never did. So we experienced what most parents of disabled children experience—constant vigilance, over- protecting the environment, supervising and educating everyone else who would have some part in Matthew’s life. You make list upon list and go over them again and again. You have to in order to provide a safe environment. (Fortunately, our child was very passive, easy going and nonadvantageous so we could relax. Many parents have out-of-control, impulsive children who may not learn from their experiences). When you go on an outing for recreation or a meal you’re quite vigilant. You notice things other parents might not. And if you don’t and your child is hurt you feel like a failure, even when there was nothing you could have done. Our son lived with us for eleven years and then in a Christian facility for the disabled for eleven years until he died in 1990. He learned and progressed so well in their care. One day we received a call that someone had dislocated one of his fingers. Those at the home were as concerned as we were and investigated the school, those on the school bus, etc. In time they discovered who had done this to Mathew and others, but it wasn’t a malicious act. Even so, when your child is seventeen and a seventy-five pound infant who can’t be toilet trained and barely feeds himself, you’re protective whether he lives at home or not. When you think of keeping these children safe what usually comes to mind? Often it’s protecting them from others who would prey upon them. Even a child with slight disabilities can be the source of ridicule, taunts and bullying from other children. Often weakness can bring out the worst in others. “Without the support of others the effects of teasing, put downs and other non-physical abuses can be long lasting. What others say to this child can be so internalized and ingrained that it creates an inordinate need for acceptance. Repetitive rejections which occur for years can wear down a child.”1 Parents or other caregivers can alert teachers or others who work with the children to be alert and intervene. A child can be given guidance on how to respond to the negative, painful remarks of others.
This is what one set of parents did: One summer his parents enrolled their son in a science camp and some kids gave him a hard time. When Charlie came home saying he didn’t wan to return to camp, Mary Kaye gave him some good advice. “I said, ‘Charlie, I’m sending you to science camp for two reasons: to learn about science and to learn about people. If you are being teased about your hair, teeth or that you can’t do something in the heat, remember, we can help all of those things. I don’t feel sorry for you. I do feel sorry for anyone who teases because they have unhappy hearts. And unhappy hearts are much harder to fix.’”2 One of the greatest fears is that of sexual abuse which occurs all too frequently. The exploitation of the disabled at any age is a concern. Not only are there children who can’t protect themselves because of physical problems when there are mental limitations involved there may be confusion as to boundaries as well as right and wrong. A disabled child may be manipulated or preyed upon by other children, siblings, adult helpers, camp workers, etc. Parents and those working with these children need to be assertive, ask questions that may border on the intrusive, look for signs or indications of abuse or sexual activity. As a counselor or minister you may be faced with difficult questions from parents such as, “Wouldn’t it be better for our mentally impaired twelve-year-old daughter to have a hysterectomy to protect her from what is likely to happen?” What would your guidance be in such a situation? Had you ever considered that a disabled child might also need to be protected from themselves to some degree. Perhaps their situation leads to depression and hopelessness.
The author of Special Kids Need Special Parents said: Children with special needs are higher suicide risk because they have additional problems. They may be compromised cognitively or physically. They may have a more difficult time networking and making friends, so they don’t enjoy the same kind of social support. Being on the cusp of adulthood, children with challenges develop a more realistic awareness of how their limitations affect their lives. All that plus their developmental issues can be too much to handle. For the child with mild disabilities, growing up can also seem like a Herculean task. Not all children with special needs are automatically high suicide risks. Their vulnerability to depression depends on the strength of their support systems.3 Each kind and level of disability brings its own unique set of concerns that a parent, school teacher, Sunday school teacher, counselor or residential worker needs to become aware of. For some children you need to become their eyes, ears, legs, arms or even decision maker for a time. It’s not just helping the disabled child that becomes our ministry, but safe-proofing their environment by educating their parents, friends and extended family. You might think some things are so obvious that anyone would automatically know about these items. There are other areas of concern with disabled children that parents might not think of because of the demands of time and attention. Accident prevention is one of these. Most parents of children with disabilities have so many things to do that it’s difficult to give much attention to preventing accidents. In addition, financial problems, other children, marital troubles, fatigue and loneliness can all intensify stress levels so that more accidents are likely to occur around the home of a child with a disability. It’s true all parents may struggle with these issues but at a different level.
Consider some basic everyday concerns: • Bath water must be tested for temperature since scalding can occur. Consider a child with poor sensation. • Fire is a tremendous potential hazard for children who are blind of deaf or can’t move easily. What you and I see, hear or sense may not be by this child. • Hanging toys and mobiles in a crib or playpen can actually trap a small toddler, and even more so if the child has poor balance or limited dexterity. • Hungry children will eat or drink anything. Our son was in this category and restaurants were a combination of enjoyment, vigilance and challenge. • Children with head problems and who fall frequently or have a seizure condition may need to wear a helmet. • Gates must be used at the top and bottom of all stairs. • Seat belts also should be worn by children in wheelchairs.4 • Time and location are also a factor in accidents. When do most accidents occur with disabled children? • Saturday mornings, when parents want to stay in bed and children wander unsupervised. • Dinnertime, when everyone is tired. • Moving time, when hazardous substances can be readily available in As a counselor or minister you may be faced with difficult questions from parents such as, “Wouldn’t it be better for our mentally impaired twelve-year-old daughter to have a hysterectomy to protect her from what is likely to happen?” What would your guidance be in such a situation? boxes and everyone is too tired or distracted to supervise children. • Accidents also cluster around particular places in homes and yards. Had you ever considered these areas? What about: • Grandmother’s purse or the purses of visitors. • Grandmother’s cupboards or bedside- table drawers. • Grandparents’ houses or the houses of other relatives or friends who have no young children.5 Once you take a child with a disability out of their usual environment parents or custodians need to intensify their alertness. One last suggestion. Don’t let your vigilance over all these concerns for disabled children keep you from learning from them. They will be your greatest teachers—about life, loving and learning to adapt. Our son taught us about life in a way we never experienced before. He changed us and for that we are eternally grateful.
H. Norman Wright, M.A., M.Ed., best-selling author, counselor, teacher, and speaker, is founder and director of Christian Marriage Enrichment, pastor of enrichment at Rolling Hills Covenant Church, and member of the AACC executive board.
