Understanding Verity and Verity’s doctors

By Her Mother -

The problems of communication between doctors and the parents of handicapped children have always given rise to misunderstanding, the onus usually being on the professional workers to make themselves clear. There are, however, reasons why parents do not comprehend, no matter how clear the explanations are, and this should also be considered. For instance parents are unlikely to confess to not understanding, so the doctor may be givcn the wrong impression. In my case I never realised what I didn’t know.

Perhaps it is different if the child is obviously abnormal, when parents seek an explanation for what they can see. My first daughter, Verity, was a beautiful baby with a delightful shock of red curls. However, by the age of two she was still not talking. toilet trained or making contact with the rest of the family, so I re-read my Dr. Spock and decided she had regressed because of jealousy of the new baby. The health visitor seemed impressed by my conclusions and my determination not to be a “worrying mum”, but did suggest that I consult the doctor.

I only did that because I had been told to; so sure was I that nothing serious was wrong. I was surprised when the doctor tested Verity and said she was probably deaf. I then felt very guilty at all the demands I had made on a deaf child and bought her a doll on the way home! Deafness was a familiar handicap to comprehend so I never allowed myself to consider that Verity always toddled into the kitchen when she heard the biscuit tin rattle.

At this time I saw a film on television about a sad group of difficult children who had withdrawn into a strange world o€ their own. Sitting with my own deaf child, who was mercifully taking time off from her destructive sessions and screaming bouts, I felt very sorry for the children and their families but in no way connected them with myseli.

Later, when I saw the paediatrician for an audiology test, I was impressed by his thorough-going box of tricks and not at all surprised when he said Verity was not deaf, because I had obliged the doctor and remembered thc biscuit tin and other “anti-deaf” evidence. I was able to believe anything I was told but in reality understood few of the implications. We were to see a child psychiatrist and the relief of being in the hands of specialists and therefore having Verity cured - specialists and cures were synonymous to me - was very great and I returned home much happier.

The psychiatrist duly arrived for a home visit and svmpathised with my position, with an eighteen month old baby and another on the way, as well as the handicapped child.

“It’s not as bad as all that”. I said cheerfully and obviously expected a cure within months.

Mrs. G. HEMKEN “I have to tell you Verity is psychotic”, he said.

deciding I needed the blunt truth. I must not have given the right reaction because he asked il: I knew what “psychotic” meant and, rather offended, I gave a dictionary definition. Today, knowing a good deal more, I should hesitate to define “psychotic”!

When we all visited his hospital for autistic and severely disturbed children, I had the first break- through in understanding as I witnessed the bizarre children fingering buttons, making odd noises and doing many of the eccentric things which I had not seen as symptoms in Verity but had accepted as part of her personality. I felt quite ill and didn’t seem to be asking Matron any intelligent questions at all.

The relief when Verity went into hospital was enormous; the house no longer looked like a battle- field, our nights weren’t broken Sy a screaming three year old and I had the new word “autistic” to conjure with. Few books for parents had then been written on autism and those that were led me to accept uncritically the theory of “refrigerator mothers” and blame myself, without ever asking how a “refrigerator mother” managed to bring up subsequent children to be normal?

As the years passed and Verity progressed through the hospital school, sometimes showing promise, I still hoped she would be able to go eventually to a normal school, but I was slowly realising she was handicapped and a complete cure would be a miracle.

Early puberty made Verity difficult to handle in junior school and her behaviour at weekends in the town, especially in shops, made us reluctant to take her out. It was suggested we transfer her to the adult subnormality hospital and I understood that to mean “no hope, finished, a human dustbin”, but fortunately I was beginning to think that a lot of my so-called understanding amounted to blind hope. trusting optimism and downright prejudice, so we all went for a visit and our worst fears were allayed. Now after Verity has spent two years in the adult hospital and in the week of her fourteenth birthday, I hope I am beginning to understand a little more wisely that although there is going to be no miracle cure, it should be possible for Verity to live a good life in a progressive hospital and that if she does become “institutionalised”, as we become too old to help care for her, i t need not be understood as a dirty word.

It must be very difficult to know whether parents have fully comprehended the implications of a child’s handicap and how to deal with unfounded optimism or excessive despair, but I am very grateful for all those in the Health and Education Service who have given our family their time and patience as we progressed in our understanding over the years.

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