On being the parent of a handicapped child

Bobby Greer

Many of the basic problems with which parents of handicapped children have to deal come directly from society. Such problems originate in society's perpetuation of certain myths or frauds, to put it bluntly. We are especially susceptible to these myths as we are growing up. One myth encouraged by the romance magazines that teenagers read is that marriage is “eternal bliss". Another more pertinent myth is that of this eternal blissful union will come children who are both physically and mentally beautiful and perfect. Therefore, the parents of a handicapped child have not lived up to the “ideal" and have produced an imperfect replica of themselves. This may cause much unconscious, if not conscious guilt, as well as feelings of inferiority. At the same time, if parents are unfortunate enough to have a handicapped child (which society says subtly they are not supposed to do), society then hypocritically expects them to be super-parents. They must supply enormous additional amounts of care, love and attention to their child. They must do this, additionally, on a 24-hour a day, 365-day a year basis; otherwise, they are super-bad.

As a professional evaluating a child's progress, I can be the most patient, empathic person on earth for half an hour. I can look critically at the impatient, harried parent. Unfortunately, many professionals encountered by parents of handicapped children do not take the 24-hour a day, 365-day a year responsibilities into account in their evaluation of the parent. In the back of parents' minds then, is a vague awareness that society is looking over their shoulders and judging whether they are carrying out their prescribed duties, giving much love, attention and devotion, not missing any treatment appointments, providing the best available care, etc. This is a “goldfish bowl" type of existence which eventually takes its toll in energy, strength and courage.

Parents of handicapped children must realise that fleeting moments of resentment and rejection of the burdens presented by a handicapped child are natural, and do not indicate that they are bad parents. They need permission to seek help and support in solving their practical day-to-day problems. The best help can be found in interaction with parents who have experienced and solved such problems. Even though every family's situation is unique, and what works for one family may not work for another, having someone with common problems with whom to interact is in itself therapeutic.

Parents realise also that only by banding together can they bring about the changes in society that are needed. Legislators, government and other leaders listen to groups when they might not listen to individuals. Therefore, in order to have their voices heard, parents of the handicapped must unite and seek common goals for their children's welfare.

The above was part of an address given decades ago, just as relevant today as it was then. The author, handicapped himself, was the father of a handicapped daughter. It was printed in The Advocate, the magazine of the Autism Society of America.