I remember holding my daughter Nikki in my arms for the first time. She looked beautiful and perfect. My heart and mind filled with loving dreams of nurturing her. I looked forward to sharing my love of books, music, and art. I would spare no effort to support her in developing her talents and abilities.
I could not have imagined at that time that she would never be able to read above a fourth-grade level; calculate beyond simple, single-digit arithmetic problems; or learn to drive a car. It was only after six difficult years of fears, frustrations, medical evaluation, and psychological testing that I learned Nikki was intellectually impaired.
Adjusting to having a child with a disability is a process, not an event. Ten percent of all children have a disability or a long-term chronic illness. Although it is a reasonably common experience, most parents are not prepared to hear, “Your child has a serious disability.” It takes some time to learn how to deal with the confusion, physical demands, behavioral challenges, extra expenses, and feelings of embarrassment and loneliness. If you have experienced or are still going through this process of adjustment, it is important for you to know that many of your responses and reactions are normal.
You may find it very difficult at first to assimilate the information that your child has a disability. You may need some time to understand what the diagnosis means. We all have images and stereotypes of children with intellectual impairment or mental illness. These diagnoses may not match what we see in our child, particularly if the child looks normal. It is helpful to learn about the disability. Find out as much as you can about your child’s diagnosis. Seek information from reliable sources, such as professional organizations that focus on the specific disability.
Denial is a psychological defense mechanism we utilize when we feel overwhelmed and unable to cope. In a way, denial can be a gift that allows us to accept the truth a little at a time and make it more bearable. Denial often comes from fear—fear due to uncertainty about the future or concern about the impact this child will have on other family members. Denial can lead to a frantic search for a cure. Parents may believe if they can only find the right doctor, the right medicine, the right program, or the right learning approach, then the child will be made “normal.” This process of searching is useful in the sense that it can help you locate resources that might help your child, yourself, and your family. Sooner or later, however, you have to confront the child’s limitations and accept your own inability to undo the disability. You must also release other people from that responsibility.
Acknowledging the reality of the disability may lead to feeling anxious. Anxiety is the body’s way of responding to fear and mobilizing resources. If a great beast were to come into your room, you would probably have an anxiety response. Your body would release adrenaline, and you would be prepared to fight, flee, or freeze. These are common responses when people are threatened in some way. As you begin to realize this child needs special care and protection, that anxious energy can mobilize your resources. Get information. Talk with other parents. Pray and talk with priesthood leaders. Seek help from professionals. Activity that reduces the feeling of powerlessness is a good way to use that energy. Self-care is also important in managing anxiety. Get adequate sleep, eat right, and take time for activities that help you relax and enjoy life. Parents need occasional respite from the heavy responsibility of caring for a child with a disability.
Belief in a just world sometimes produces unwarranted guilt. We want to believe that our world is predictable and controllable. This belief protects us from our fears. We convince ourselves that bad things happen to bad people and good things happen to good people. This seems just. The downside of this belief is that when something does hurt us, we tend to feel we are somehow to blame. Comments by well-meaning but insensitive people can trigger these feelings. Comments such as “You must have needed this particular experience for your salvation” or can lead parents to have painful and unwarranted guilt. They start asking, “Why me? Am I so bad that I needed something this severe to shape me up? I wanted only to be a good parent.” Questions may also come from people who believe they can protect themselves from this same experience if they can only discover what you did “wrong.”
You will need to find your own spiritual meaning concerning painful events and not allow others to impose their answers as to why these things happened. It takes years to fully understand, and sometimes the answer doesn’t come in this life. Trust that Heavenly Father is a God of love and does not delight in punishing you. That way, you will be able to find more accurate meaning in the adversities you face.
Sadness and Grief
Strong emotions result from losses. If you have a child with a disability, you may feel the loss of the child you thought you would be raising. You may also feel grief over the loss of what you may have envisioned as an ideal family. Indeed, you may have to reframe your definition of an ideal family.
When I was a young mother with four children, my husband was serving as a bishop. It felt wonderful to be part of my idea of an ideal Latter-day Saint family. But my husband died of cancer, and I was left to raise my children alone. I had to return to school, finish a degree, and work. I had to reframe what I perceived an ideal Latter-day Saint family to be. I later married a man with six children, and we became a blended family with ten children. Once again I had to reframe what I thought an ideal LDS family was.
Learning how to grieve and then go on with your life can build strength. When you can acknowledge and work through painful feelings, you develop emotional, spiritual, and psychological skills that can help you in other areas of your life. Your capacity for empathy can grow through a personal acquaintance with grief.
We need to make sense of what we perceive as injustice. Raising a child with a disability can give you a close view of the cruel side of life. Creating a new definition of what is fair and just, however, can reduce anger. For example, when my daughter was 10 years old, she attended a Sunday School party. She came home scraped and bleeding. One of the boys in the class had called her a “stupid retard” and pushed her down. I felt angry that my child was hurt. Angry feelings can be a message that something needs to be done. Anger can alert us to dangers, problems, and offenses that may need some correcting. We can make decisions, however, about how we act on those feelings. We can deal with anger in a constructive way.
My husband and I visited the boy’s family. We sat with the boy and his parents and calmly talked about what the word retarded meant. We asked the boy how he would feel if he were unable to do the things he enjoyed. This boy became one of our daughter’s strongest allies. That experience ultimately helped another person to grow. This seemed “fair.” Retaliation would not have produced justice. Although anger may come from experiences with injustice, we can turn them into good experiences for ourselves and others.
The Law of the Universe
Children with disabilities have a harder time mastering routine behaviors and activities. Learning emotional skills is even more difficult. They experience more frustration than other children. If the disability affects brain functioning, the child will find it harder to think through problems rationally. My husband refers to behavior resulting from this difficulty as “the law of the universe”: If you cannot talk it out, you are going to act it out. In other words, what cannot be verbally expressed will be acted out in some way, even if it is just through having a stomachache. Often the child’s misbehavior is simply an attempt to cope with some other problem.
For example, when my daughter was 18, she would not go to bed and insisted on leaving her light on all night. She would get very angry and say, “I don’t want to go to bed because there are missionaries hiding in my dresser drawer.” I recognized this as clearly delusional.
Rather than being angry, I tried to understand. What would cause her to be so frightened? As I thought about it, I realized that many of her friends were getting married. She had attended bridal parties where they had received beautiful things they would put in their dresser drawers. They were getting married, leaving her, and were no longer available as her friends. She also longed to have those same experiences and had expressed concerns: “Will I ever marry? Will anyone ever love me? Will anyone ever give me a bridal party and beautiful things?” Her friends had married returned missionaries. She could see that returned missionaries were great husbands. Somehow, all of this went together. She was also poignantly and painfully aware that she lacked the skills and the ability to manage the demands of a marriage. She was unable to verbally express those conflicts or even fully understand them, so all we heard was a delusion about missionaries hiding in the drawer. Once I began to understand her inner experience, I was able to talk it through with her. We worked together to verbalize her conflicts and grieve the sorrow of not being able to marry. The problem behavior stopped, and she was able to sleep peacefully.
Parents sometimes find it difficult to identify the source of a disabled child’s misbehavior. Disabilities differ in the kinds of challenges they create. Children’s natural dispositions, strengths, and weaknesses vary. The circumstances surrounding incidents of misbehavior are unique to each family. These factors make it difficult, but if you can determine the meaning of the misbehavior, it becomes easier to know which problems need to be solved. Becoming angry and frustrated with the child is counterproductive because these reactions generally prevent parents from identifying the real source of the misbehavior.
One fairly common source of misbehavior is attention seeking. The child may be trying to get your attention because he or she is hungry, tired, scared, overstimulated, bored, frustrated, sick, or having an allergic response to food or the environment. If a child doesn’t have the skill to talk it out, he or she will act it out. This is particularly true for children who have disorders that compromise brain functioning, such as attention deficit disorder, intellectual impairment, bipolar mood disorder, or schizophrenia. The child may feel overwhelmed and may not be able to verbalize the distress. Parents need to be alert to what is going on in the child’s life that may cause him or her to seek attention.
Strategies that do not work in managing misbehavior include (1) making discipline rules and not enforcing them; (2) yelling—the child learns not to listen unless somebody yells; (3) insulting and name calling, which only shame the child; (4) withdrawing privileges that have no relationship to the misbehavior; and (5) physically or verbally abusing the child. These strategies usually increase misbehavior rather than help the child learn how to manage difficult situations and emotions.
Many blessings come from raising a child with a disability. I realize the important role Nikki has played in my personal and spiritual growth. The experience has brought me to my knees on many occasions because I needed further instruction from a wise Heavenly Father. It has opened my heart to truths I had desired to better understand. I do not yet have all the answers to “Why me?” or “Why her?” I do, however, have an increased understanding of many principles—an understanding that is priceless to me.
One of the most beautiful realizations is the knowledge that my child’s spirit is not disabled. I have become aware that she experiences a rich spiritual life. She is often the first in the family to feel the presence of the Holy Ghost on sacred occasions. She frequently shares spiritual insights that her limited intellectual abilities could not have generated.
When Nikki received her patriarchal blessing, she was told she had been given this special experience in mortality because of the greatness of her soul. She helps others learn compassion and understanding. I am grateful for all the good she has done for our family as well as for many others. Nikki teaches us that love, kindness, and charity are not just for the swift or the strong, but they are also for those who struggle. I have the firm hope of an eternal relationship with Nikki. I know that when she is finally healed of her disability, I will learn yet more from the greatness of her soul.