Sheila Hollins is a professor and honorary consultant in the psychiatry service for people with disabilities at St. George's Hospital in London. She is the mother of four children, one of whom, Nigel, is mentally disabled.
When we think of parents, we usually picture the joys of parenthood. In truth, being a parent is a bittersweet mixture of joy and pain—the pain of childbirth, the pain of feeling unequal to the task, the pain of watching your child suffer. But there is also the joy of receiving your child's love, the joy of watching a new personality blossom, the joy of sharing in their triumphs.
Seeing Things as They Are
Why should everything be so different for parents of a child with special needs? All parents carry hopes before their child is born—hopes they may speak aloud or keep silent in their hearts. Perhaps they dream of a soccer player, an engineer, a pianist. Someone who will reach the heights they never reached themselves. Or they tell themselves: "Our child will have all the chances we never had." One writer observed that the real child is always different from the imagined one, and that mothers and fathers must accept their child as he or she truly is. The difference may be trivial. Or it may be enormous. Perhaps there will be a particular disability—a sensory or motor delay, a physical handicap, an illness of varying severity. This means at once that the child needs something more. I felt this strongly as a mother—that if a child has special needs, then that child also requires something extra. My son and my family needed special help. The doctor didn't want to hear about it—I think because he felt powerless—and so he sent me to a specialist. Other realities weigh heavily. In groups with other children, you feel out of place. The other mothers don't know what to say. Friends with their normal, healthy children avoid coming to see us. There are the experiences parents themselves had in childhood, or in previous relationships. Their experience raising older children. Family stories of past birth defects. Then there are particular factors—a deaf child born to a family of musicians; a disabled child in a family struggling to feed many mouths. The cultural attitude of the community matters greatly too. If the culture around you believes disability is contagious, the child and family will not feel welcomed. A handicapped child may be seen as a gift from God or as a curse from the devil. This obviously shapes how people treat that child.The Attitude of Professionals
The first people to shape parents' behavior are often professionals—and their influence can be deeply harmful. Before birth, for example, in England, many parents are offered prenatal screening to check for disability or malformation. Some obstetricians tell parents: "If your child has Down syndrome, you owe it to society to abort." It is rare for parents in this situation to say: "I want this child, and I want help preparing to welcome them at birth." Some parents even take legal action against obstetricians who failed to diagnose their child's disability beforehand, because of the financial cost they must bear. I know such cases are common in England and far more numerous in America.Every Person's Reaction Is Unique
I have seen very different families react in the same way to a disabled child, yet experience greater or lesser emotional distress despite apparently similar needs. The outward situation may be the same for these families, but their anguish is not. The reason lies not in external reality but in our inner reality—which is unique to each of us, different for everyone. How parents react to the birth of a disabled child, or to a late diagnosis, resembles how most people respond to losing someone they love. Grief normally has a time limit. It ends when life reorganizes itself around the absence of the person who died. But a disabled child is there every day, reminding parents of the lost dream, the perfect child they had imagined. This is the parents' grief—and it takes far longer to fade. At crucial moments in the disabled person's life, this pain can resurface entirely. When the child begins school, for instance, remembering all the things they cannot do can revive feelings of sadness and regret for what might have been. This can happen when another child is born, when the disabled child reaches puberty, when they must leave school, enter a facility, or when one parent becomes ill or dies. Such crises are possible and real, layered on top of the ordinary struggles that arise in every family. This grief reaction is common and should not be called pathological. It ranges from less to more painful, lasts longer or shorter, and resolves better or worse depending on each situation.* * *
As a mother, I felt very strongly that if a child has special needs, that child also requires something extra.
As the reality of disability sinks in and parents "mourn" the perfect child they imagined, their pain can harden into guilt: "I must have done something wrong." Or anger toward their spouse: "It comes from your family—your grandmother died in a psychiatric hospital." Guilt and anger may have targets. Parents blame the obstetrician, the doctor. Many marital conflicts arise from this need to fault someone. Part of the problem is that parents, at least in the West, expect a healthy child—perfect in every way. When parents seem to accept what has happened, sometimes they cling to one last hope or one final condition before truly accepting reality. This bargaining—"Since he's starting to talk..."—can lead to a late rejection of a child who seemed to have been accepted by the family. Gradually, adaptation and acceptance bring a reduction in suffering and distress. When reality is accepted, love takes hold. Parents recover confidence in themselves and begin to feel capable of working with professionals' advice. But until they reach this stage of acceptance, they will be labeled "uncooperative" or anxious by professionals, and the relationship will be troubled and unproductive. This process I'm describing is dynamic. After acceptance comes a point when those feelings of distress and anger resurface, when parents simply cannot bear it anymore and need help to fight on.