What a Pity, Having a Child Like This!
‘What a pity it is, a young couple like you having a child like this! Do you want to put her in a home?’
Such, forty-three years ago, were the words of a paediatrician meeting for the first time the parents of a Down’s syndrome child. It was only by accident, and only gradually, they had discovered that their new baby was different. The day they left the hospital the nurse who accompanied them to the car had parted with the words, ‘’If you need help in any way, don’t hesitate to call us.’ The tone of voice, they had thought, was odd, even ominous. Then a friend mentioned to another friend how sad it was about Annie Mary’s baby, and so the story spread, until one day yet another friend called to express her sympathy.
Eventually, they made an appointment with the doctor, who told them they had to accept that the child was ‘different’. ‘How can you tell that she’s “different”?’ they asked. ‘How can you tell a Labrador is a Labrador?’ he replied.
Up to this point, there had been no professional attempt to break the news, explain its meaning or offer counselling. Now the doctor began to spell out the meaning of ‘different’, and particularly all the things the child would never be able to do.
It was at that point that resolve asserted itself: ‘I’ll prove that man wrong.’
And so began the extraordinary life of my niece, Monica, who died last week: a ‘special needs’ child who left an extraordinary footprint. To her parents she was a priceless gift, but the wrapping didn’t say so. She came marked, ‘Trial of faith!’ She turned out to be a treasure.
Others, I hope, may take encouragement from Monica’s story. There were, indeed, things that other people could do that she couldn’t do, but there were also things that she could do that others could never do. For example, in her early years she could amuse herself (and others) by putting her right leg behind her head and scratching her left ear with it. I, who can hardly touch my left ear with my right hand, report the fact with wonder.
But yes, there were things she couldn’t do. Her speech was never good and her vocabulary was limited. But limited as it was, she put it to good use, pressing it into the service of her wit: a wit which itself served a very clear moral code, and brought entertainment and embarrassment in equal measure. She once discovered that a gentleman visitor had not put the seat down after visiting the loo. She emerged in high dudgeon, told the gentleman, ‘You no’ good!’ and demanded that he rectify the situation immediately. On another occasion when a lady appeared wearing a short skirt, she left the room, came back with an additional garment, covered the lady’s legs and declared, ‘My daddy noticing your knees!’ And when in her teenage years she was given a doll as a birthday-present, she refused to take delivery and declared, ‘Me no kid!’
There were times, too, when she took the law into her own hands. Whenever she visited a home and saw a calendar hanging on the wall, she would circle the date, 19th June, her birthday, thereby creating an irresistible sense of moral obligation. This became predictable, but many times the inventiveness came out of the blue. One day they had a phone-call from a young man about to be married, enquiring whether they had noticed a cheque missing from their cheque-book. ‘No,’ they said. ‘Well,’ he said, ‘I’ve just had a cheque for a million pounds!’ Another day, when an engaged couple arrived, she noticed that while the lady had a ring the gentleman not. She thought this outrageous, but fortunately that very day there was a special offer of rings in the Daily Express. Somehow, she managed to order one, and the first her parents knew was when the company phoned up to ask about the size.
But to keep the record straight, she wasn’t always an angel. It took a long time to teach her not to stick her tongue out; it would have taken more than a life-time to teach her not to raid her uncle’s fridge and stash away the Coke; and it would have been hard to keep her from being centre-stage in any company.
For the parents, life became a learning-curve. Shortly after Monica was born, another mother called accompanied by her adult Down’s syndrome daughter. Her intentions were of the best. ‘Monica,’ she said, ‘is going to go to your school.’ But it was as if the mere fact of ‘special needs’ bound the baby and the adult together as one, obliterating every other difference, almost eliminating the possibility of development and suggesting that for every Down’s syndrome child there was but one path. Annie Mary resolved that day that she would never take Monica to visit another Down’s syndrome mum unless specifically invited.
She also taught herself to crochet and dress-make, and many people thought the results were sheer vanity. But it had its own logic. Many people found it incredibly hard to know what to say when they first met Monica. It made a huge difference when all they had to say was, ‘What a lovely dress.’ It wasn’t simply a case of making life easier for Monica. It also had to be made easier for others.
The 20th century was in many ways a dark century yet, to its enormous credit, it revolutionised the way we see those with learning difficulties and other special needs. The blundering medical protocols that prevailed when Monica was born are now a thing of the past, and parents are well-informed and well-supported from the beginning. Society, too, has changed its attitudes. Children with learning difficulties are no longer hidden away or institutionalised. Instead, parents and siblings are happy to own and affirm them.
The danger remains, however, that we see them not as individuals, but as a class. Monica was a one-off, and every other Down’s syndrome child is likewise a one-off. The most fundamental difference, of course, is the gender one. Masculinity and feminity, however defined, will show themselves in special needs children in all others, and while this is part of the creation order (and indeed of their genetic make-up) it carries its own risks. When Monica’s parents left Lewis for the mainland and came under the ‘care’ of another local authority the first advice they were given was that Monica must go on the pill. But quite apart from gender, the personalities, skills and even the learning difficulties of Down’s syndrome children vary enormously. None should be a model for another.
And while integration is welcome, and should require no conscious choice, it also has its risks, especially when the state assumes that it, rather than the parents, is the responsible carer and decides that if some special outing is arranged all those who come along will have money for drinks. When Monica’s parents said, ‘She’s not allowed drinks,’ eyebrows were raised. But when they saw the rest of the party (many of them on medication) being sick all over the place, they felt vindicated. Clearly, however, accepting state help comes at a price.
Like several others, Monica was a communicant member of the Free Church, and it was very plain that pleasing God was a key factor in her life. Indeed, one Sunday when her parents were unable to go to church, she declared, ‘God not happy!’
It was no flippant comment. The thought distressed her, as did any thought of unhappiness. Her favourite expression was, ‘Be happy!’ and it was as the bearer and embodiment of that message that ‘a child like this’ illuminated people’s lives.
This article first appeared in the West Highland Free Press 1st May 2015