«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»
Other types of mental retardation may be caused by serious injuries during pregnancy, a serious disease such as AIDS or Reye’s syndrome, neural tube defects (NTD) such as spina bifida or anencephaly, or birth trauma resulting in cerebral palsy. (NTDs and cerebral palsy are discussed in the chapter on motor disabilities.) Children may also become brain damaged or mentally retarded after birth as a result of an accident or serious disease; for example, shaken baby syndrome can cause mental retardation. Exposure to toxic substances and malnutrition can also cause mental retardation to a fetus or child.
definition of mental retardation and the implications of labeling;
the sentimentalization of children with mental retardation; and ethical, moral, and legal dilemmas concerning issues such as abortion, prenatal testing, genetic discrimination, and medical treatment.
These issues are emotional and intellectual minefields and can profoundly affect us morally and spiritually. It would be easier to ignore them and focus solely on the mechanics of how to include children and youth with mental retardation in our ministry. However, to do so would be an enormous disservice to families who have children with mental retardation, as they live with these issues every day. Moreover, these issues affect how people with mental retardation are accepted in our churches. While discussions of these topics can be polarizing, there is no better place than within a spiritual community to talk about them, for they can influence how we ultimately view and value all life.
Over the past thirty years, U.S. society has followed a policy of deinstitutionalization. Parents today can receive early intervention services for their children and place them in the public school system, both in special education programs and in regular inclusive classrooms. More and more children with mental retardation live at home with their families, except for those who have severe medical needs. Many adults with mental retardation live in group homes and have jobs and other responsibilities.
Yet many negative cultural attitudes are still prevalent. Book after book, article after article tells of the understandable devastation and grief parents feel when they learn that their child has mental retardation and the unrelenting prejudice of people whose attitudes about mental retardation have changed little over the years. In Expecting Adam, Martha Beck describes what it feels like
for a parent to experience this prejudice:
Just as I feared, Adam and I have experienced mockery and judgment and exclusion, and they have all been painful. It hurts every time people look at Adam and see only the deforWelcoming Children mity of their own perceptions, instead of the beauty before their eyes. But more and more, I feel this pain not for my son but for the people who are too blind to see him. The lessons I have learned from Adam have hurt more than just about anything else I ever felt in my life. And it’s been worth it, a thousand times over.7 Consideration of people with mental retardation adds moral complexity to discussions about abortion, prenatal screening, priorities for organ donor programs and other expensive medical procedures, and the identification of defective genes by the Human Genome Project. The issues of prenatal testing and abortion are sometimes linked with discussions of Down syndrome and fragile X syndrome. Many people believe parents have the right to terminate a pregnancy when these syndromes are identified, while others believe that prenatal screening should be banned because its results can lead to a decision to abort a child. Still others point out that banning prenatal screening does not take into account the woman who wants to know if her child will be born mentally retarded in order to prepare herself to be accepting and loving when the child is born. Some advocates for people with Down syndrome believe that a woman should never abort a fetus just because it has Down syndrome. Other advocates, including parents of children with Down syndrome, such as Martha Beck and Michael Berubé, feel that the choice to abort should be the mother’s and that doctors, in particular, should stay out of the decision-making process.
Another area of contention and moral complexity involves the highly expensive medical procedures and treatments that children with mental retardation often need. What is the humane thing to do if there is one liver donor and two children who need a liver transplant to save their lives—one who is severely mentally retarded, with little likelihood of ever being able to care for himself, and one who is bright and inquisitive with unbounded potential?
There are no right or wrong answers to questions like these.
115 Mental Retardation and Developmental Delays As ministers and religious educators, the best support we can provide is to make sure that parents faced with this decision receive all the available information. We should also be sensitive to the fact that parents of children with mental retardation are very aware of the controversies and prejudices surrounding their children.
Ministering to Families In an effort to counteract the stigma often associated with mental retardation, some promote a vision of children with mental retardation as gifts from God, sent to make us better people. This sentiment is difficult to contradict without sounding callous.
In her book Differences in Common, Marilyn Trainer suggests that these children are “special... in the truest sense of the word.”
But she and her husband strongly object to patronizing descriptions of their son, Ben, who has mental retardation:
How many times have we winced inwardly, saying nothing while listening to those dreadful clichés about “Heaven’s Special Child,” or “Little Gift from God,” or “Angel Sent from Above” just for us? The idea that Ben is a gift from heaven is totally offensive to us. Worse, it is demeaning to our son. Ben is not a cute little kid any more, nor unaware of things said about him. He is a young adult functioning pretty well in the real world. And that’s exactly what he wants to be, no more, no less.
We’ve come to the conclusion that if we are to be true and effective advocates for our son, we have a duty to tell it like it is. How can we, his parents, expect society to accept him in a realistic way—to respect him as a person, flawed perhaps, but a person nevertheless—if we insist on adorning him with a mantle of the supernatural.
Realistic acceptance is what we all should be striving for. Sentimental glop is not going to do it for our kids. In fact, we’re convinced that it promotes the continuation of negative and outdated images.8 116 Welcoming Children We do not want to deny the humanity of children with mental retardation. They are human beings with their own traits and abilities.
But the idea of children with mental retardation as gifts from God contains an element of truth, in that many parents of such children view them as wonderful blessings and feel that their children have changed their perceptions and visions of life dramatically. In Life as We Now Know It, Michael Berubé suggests a
Even if you don’t think that biology is destiny, and even if you don’t believe evolution follows any plan, there’s still something very seductive about the thought that Down syndrome wouldn’t have been so prevalent in humans for so long without good reason. Indeed, there are days when, despite everything I know and profess, I catch myself believing that people with Down syndrome are here for a specific purpose—perhaps to teach us patience, or humility, or compassion, or mere joy. A great deal can go wrong with us in utero, but under the heading of what goes wrong, Down syndrome is among the most basic, the most fundamental, the most common, and the most innocuous, leavening the species with children who are somewhat slower, and usually somewhat gentler, than the rest of the human brood. It speaks to us strongly of design—if design govern in a thing so small.9 There is much in the literature to support the view that children with mental retardation can bless a family’s life. After the initial feelings of grief, parents who accept and love their child often feel that they have been given a special gift. Whatever the parents’ view, we need to tread very carefully. In particular, we must avoid blaming parents who decide they cannot keep their mentally retarded child at home. Most children with Down syndrome are mildly to moderately retarded and do well in a loving home environment. But the more severely retarded and medically dependent the child is, the more difficult it will be to have him or her live at 117 Mental Retardation and Developmental Delays home. Just as it is incorrect to assume that all children with mental retardation should be institutionalized, it is incorrect to assume that all children with mental retardation belong at home with their families. Each child is born into this life with his or her own set of circumstances, needs, and support systems, and all those factors should be considered when selecting the best form of care. Where the child lives must be the family’s decision.
Appropriate ministry to a family with a mentally retarded child depends on what stage the parents are at in terms of accepting their child’s condition. Parents who are just coping with the news that their child is mentally retarded will need different support than parents who have accepted their child’s diagnosis. The parents of children with Down syndrome often learn of this condition either before or just after the child is born. Some parents may think there is something wrong with their child’s development but not receive the diagnosis of mental retardation until months or even years after birth.
Whenever they receive the news, the parents will probably be faced with conflicting and confusing information and experience emotional overload. They will need consistent and gentle support during this time. This is the stage when parents are feeling bad for themselves and for their child. Helping them get through this stage so they can focus more on the needs of their child will begin the healing process.
Smith describes what parents typically feel about their child with mental retardation. Pastoral care may focus on helping
parents accept and work through these feelings:
• Helplessness: Parents feel helpless when they sense something is developmentally wrong with their child but they can get no answers. Parents may also feel helpless after the diagnosis because of feelings of inadequacy.
• Denial: Some parents pretend that there is no problem when they feel that there is nothing they can do to make the situation better. While denial is a normal reaction, pretending too long can jeopardize the ability to obtain critical services for the child.
118 Welcoming Children
• Guilt: Most parents blame themselves for their child’s mental retardation. In an effort to answer the question “How did this happen?” the mother may review her pregnancy and history to see if she did anything wrong. The most important thing to remember is that unless parents were heavy drinkers or drug addicts, they are not the cause of their child’s mental retardation, just as they are not the cause of earthquakes or tornadoes.
• Uncertainty: Parents who do not know the cause of their child’s mental retardation may ask endless questions about why and whether there was anything they could have done to prevent it. The fact is that one-third of parents never find out the cause of mental retardation in their child. This may be small consolation, but focusing only on finding out the cause will not help in moving forward and focusing on the needs of the child.
• Resentment: Having a child with mental retardation when others around you have normal children creates endless opportunities to feel resentment. When other parents talk about their children’s struggles, it is understandable to think that they do not have a clue as to what it really means to struggle. As parents learn to know, love, and accept their child, these feelings of resentment usually fade over time.
• Anger: People get angry about things they cannot control. A diagnosis of mental retardation is definitely one of these. Parents may become angry periodically if their child does not receive the services he or she needs or is treated unjustly or cruelly.
• Relief: Parents who have spent months or years of uncertainty about why their child cannot keep up with other children will usually feel relieved when they finally receive the diagnosis of mental retardation. Now they can finally move on and focus on what the child needs for services.
• Grief: Parents of a child with mental retardation will probably experience feelings of grief over and over again. That sorrow can be a constant companion. Parents grieve for the child they wanted and for the fact that no matter how much they love their child, the 119 Mental Retardation and Developmental Delays mental retardation will not go away. Grief can become more manageable when parents learn to focus on who their child really is and take pride in his or her achievements.
• Betrayal: Parents who learn later that their child has mental retardation may feel a sense of betrayal because the doctors and other professionals did not figure it out sooner. Some professionals hesitate to tell parents because they feel an accurate diagnosis for many children cannot occur before age five and because they do not want to be the bearer of bad news.