Raising a Child with a Mental Disability: A Personal Story
MARLEEN S. WILLIAMS
I remember holding my daughter, Nikki, in my arms for the first time. My husband and I had two sons, ages two and four, but now having a daughter fulfilled a longing I had kept in my heart for many years. I had grown up in a loving family, but we had limited financial resources. I looked forward to the ability to offer my daughter many of the opportunities I had wanted in my own life: a college education, training to develop talents and abilities to their full potential, travel opportunities, and the pretty dresses I had wanted but could never afford. My mind explored dreams of how I would nurture her talents. We would share together my love of music, are, and history. We would cook and sew together. I would read the scriptures to her, and show would have an understanding of the gospel principles. I brought her home from the hospital feeling confident that if I mothered her well, she would fulfill the longings of my heart.
As she grew, I began to notice differences between her development and what I had experienced with her two older brothers. At first, I attributed the discrepancy to a different temperament. But when her first birthday arrived, and she had never attempted to stand on her feet nor even engage in normal verbal babbling, I began to worry. I asked her pediatrician if something was wrong. He questioned me about the ages of my two other children and then declared, “You have just had too many children too close together. Go home and pay more attention to her and she will catch up.”
I puzzled over where I might have failed, but vowed to work even harder to be a good mother. After five more years of frustrating mothering, medical and psychological evaluations, tears, and prayers, we were told that she would probably never progress beyond the third- or fourth-grade level of cognitive functioning. I felt flooded by a confusing mixture of thoughts and feelings: relief (it wasn’t my fault); inadequacy (I didn’t know how to raise a child with retardation); anger )life had played a cruel trick on me); and guilt (I must have done something wrong to deserve this). I didn’t realize at the time that I was embarking on one of the most instructive and spiritually enlightening experiences of my life.
I soon became aware that raising a child with mental retardation assured me a front row seat in the battle between the polarized forces of good and evil. As Nikki grew, she was often teased, ridiculed, and made the focus of cruel jokes. There were also more subtle ways that people ostracized her. Some parents would make excuses as to why Nikki was not allowed to play with their children. Because Nikki looked “normal,” it was often difficult for people to believe that she could not “act her age,” even when she truly tried. I marveled more, however, at the tender sensitivity that flowed from other children who seemed to sense Nikki’s frustration and helplessness. Some children would rush to comfort and assist her.
Nikki became a source of instruction to teach others compassion. For example, one day she returned with tears and bleeding hands from a Sunday School class party. A ten-year-old boy in her class had called her a “retard” and pushed her down in a pile of rocks. My husband and I visited the boy’s family, sat down with him and his parents and explained what retarded meant. We asked the boy to imagine what it would be like to not be able to do what others do so easily. How would he want to be treated? The boy eventually became one of Nikki’s defenders and allies. He treated her kindly thereafter. I began to understand that much of the cruelty, prejudice, and unfair judgment that is directed against people who are different or disabled comes from psychological defenses. People want to protect themselves from a fear that they, too, could become disabled or ostracized. Those who could love and accept themselves in their own mortal humanness seemed more easily able to accept Nikki.
Having a member with a disability affects everyone in the family. Nikki could not keep up with the fast-paced lifestyle on which the rest of the family thrived. What our other children experienced as challenging and invigorating, she experienced as frustrating and demoralizing. Family outings were often punctuated with tantrums, tears, and holy terror. Mental retardation not only interferes with the process of academic learning, but also social and emotional skills and maturity. Nikki, like many children with retardation, had a short attention span and was hyperactive. Everyone in the family had to slow down and simplify activities in order to accommodate Nikki’s needs. As I look back on her childhood, I can now see the blessing she has been to our family. Her brothers learned that having a bright mind is a gift to be used to serve others, not an entitlement to have others serve them.
Adolescence was a particularly difficult time for Nikki. Her father died when she was thirteen years old. She missed him and had difficulty understanding and expressing her own grief. She often acted out her feelings because of her inability to express them adequately. On several occasions, she disappeared from home and could not be found at any of the neighbors’ homes. I always found her fuddled in the bushes outside the window of the bishop’s office at the church. Her father had been the bishop of the ward before he died. Nikki said she felt “close to him” there. The Young Women of the ward rallied around Nikki. They comforted her and included her in parties and activities. I began to understand the power and necessity of a Zion society. It is only when the strong sacrifice to serve the weak that both can become sanctified.
Nikki continues to struggle with challenges, but has grown to be a loving and contributing adult member of society. She works as a lunchroom aide at an elementary school and serves in the nursery in our ward. Several years ago, she received her patriarchal blessing, in which she was told that her mortal life is of great importance. Her disability was not an accident. She came forth in this life under special circumstances so that the Lord could give her the responsibility of affecting the lives of others. She has become a tool in the Lord’s hands to brighten the lives of others. She was promised that she will eventually come forth to claim all the joys of earth life. There is no limit to the blessings that are in store for her.
My story of raising a daughter has been different than I expected. But the process has been richer in meaning for me than I would ever have dared to hope. Nikki and I share a bond of deep eternal love for each other. We look forward to a continued eternal relationship. I am grateful for all that she has had the courage to teach me. I have learned that love is not only for the swift and the strong, nor just for the accomplished and powerful, but also for the struggling and confused. I have learned that if I, in my weakness, can deeply love Nikki through all of her struggles, then surely God in His greatness loves each of us.
