There is now widespread acceptance of the idea that people with learning difficulties should be able to live an ordinary life in the community. For most people, an ordinary life means marriage and children. Do we hum and haw at this point and say: ‘Ah, well, we don’t mean that ordinary’? And if not, then how can we best support men and women who make the same ordinary choice for themselves?
About a quarter of a million such parents are known to health and social work agencies in the UK but the real figure is almost certainly higher. Moreover, the number is growing as more people assert the right to make their own choices and live their own lives.
This increase worries a lot of professionals who are responsible for helping families and protecting children. They worry that parents will have more children than they can look after properly; that the children will inherit their parents’ learning difficulties; that the parents will neglect their children and treat them badly; and that the children will lag behind developmentally and at school.
There is a substantial body of international research which shows that most of these worries are either exaggerated or misplaced. What are the facts?
First, learning difficulties are not usually passed down from parent to child and parents are no more likely to have a baby born with learning difficulties than anyone else. Second, parents with learning difficulties have slightly fewer children, on average, than other families. Third, parents are capable of learning how to look after their children, given the right training. Good training makes for better parents, and all parents can benefit from being trained. Fourth, parents with learning difficulties are no more likely to abuse their children than other parents, but they are not so good at protecting them from being abused by others. Also there are high levels of—usually loving—neglect and poor childcare in families, ranging from poor diet and hygiene to lack of discipline or too much smacking.
These points have to be seen in context. Most mums and dads with learning difficulties will have had a tough time as kids themselves, shut away in institutions, wrongly used by others, bullied and starved of affection. Most have to manage on too little money, without paid work, in poor housing and without anyone to call on for help when they are in trouble. Poor child care might be expected of any parents under such circumstances, whether they have learning difficulties or not. The problems that beset parents with learning difficulties are made worse because they have no good examples to follow; because no-one has shown them how to look after children, and because parenting on the bread-line is so much harder.
Finally, there is some truth in professionals’ fears that children in these families will not ‘keep up’. Children have been found to develop more slowly because their parents don’t talk to them, cuddle them or play with them enough. Most of these failings are easily remedied, given the right kind of family support: for example, playgroups, nursery education, breakfast clubs, summer camps, etc. Professionals can more easily supply these services, to make good what the child is missing and the parents are not providing, than they can replace the love between parent and child.
What do we know about the experiences of parents themselves? Over the past ten years, Wendy Booth and I have talked to a lot of parents with learning difficulties. What did they tell us about the joys and heartaches of being a parent?
THE GOOD THINGS ABOUT BEING A PARENT
A sense of achievement
Being a parent can provide a real sense of personal fulfilment. Watching their children grow and develop gave parents a lot of satisfaction. They took obvious pleasure in their children’s accomplishments like learning to walk, starting school, and learning to read. Older parents too spoke proudly of the successes of their adult children–like their qualifications, jobs and good wages, etc. Having children gave parents a sense of purpose in their lives.
Being like others
People with learning difficulties are usually made to feel different. They are sent to special schools, travel on special buses, attend centres instead of going to work. Being a parent is a role they share in common with other people instead of one that sets them apart.
Being treated as an adult
People with learning difficulties are very often treated like children, no matter what their age, and their adult feelings are denied. Being a parent cuts through such silliness. It’s hard to keep on treating someone as a child when they have children themselves.
Many people with learning difficulties find it hard to form close and lasting relationships. The people they know are always moving on. Staff change jobs. Friends are moved into different accommodation. Keeping up a relationship is hard if you can’t write or use buses, have little money or are not allowed out by yourself- And those in positions of power too often see it as their duty to control people’s relationships and put an end to ones they think are unsuitable.
Becoming a parent enabled people to fulfil their need to love and be loved. One father said: ‘We’re never parted, we’re all together. But that’s how it should be as a family, be together all the time, being together to look after and love and care for.’
THE DIFFICULTIES OF BEING A PARENT
Pressures for abortion
Many mothers came under considerable pressure to have their pregnancy terminated, often from their own mother, who was worried that she would have to look after the baby, or from the baby’s father, who didn’t want the responsibility of a child. These arguments often caused tension in relationships with the very people on whom the mother relied for help, and she needed a lot of courage and determination to keep the baby.
Having children taken away
Some parents find the difficult, round-the-clock job of looking after a baby too hard. In such cases the social services may have to find the baby a new home and new parents for its own safety and protection. Other parents run into problems when their child grows older and needs more watching. But in a lot of cases children are removed from parents with learning difficulties when they wouldn’t be taken away from other parents.
No matter why children are removed, their loss causes the same sort of pain and grief as a bereavement. Parents with learning difficulties live with the constant fear of losing their children, and for too many their fears turn into fact.
Being watched all the time
Social workers, health visitors and other professionals keep a very close eye on parents with learning difficulties to make sure their children are safe and well. Parents we talked to hated being kept under constant surveillance and having lots of people coming into their home and bossing them about.
Parents also resented the number of ever-changing practitioners who kept checking up on them and giving them contradictory instructions about what they should do. They knew they might lose their children if they did things wrong, but they were never sure if they were doing things right. This insecurity caused them much stress.
We hear a lot about child abuse, much less about system abuse, but it too can be a serious problem. System abuse occurs when practitioners, whose job is to help people, end up harming them instead. It includes things like failing to keep promises, saying one thing and doing another, treating people unfairly, applying double standards, failing to follow the rules, misusing their own power.
Parents were no strangers to system abuse. They felt let down by the services, which made their job as parents even harder. The twist in the tail is that when they ran into difficulties as a result it was they who got the blame. The feeling that they were at the mercy of a juggernaut-like system driven by powerful people who couldn’t be trusted left the parents not knowing where to turn for help when they needed it.
HOW SHOULD WE SUPPORT PARENTS?
We must stop burying our heads in the sand—parenting is not an issue that will go away. Parents with learning difficulties are unlikely to succeed without long-term help, especially through the years when children need a lot of looking after. But given the right kind of support they can, and do, succeed. Most parents know they need help; their difficulty is in finding the kind of help they can accept.
Parents need the kind of help that many get from grandma (usually the mother’s mother). Where there isn’t a grandma able or willing to help, social services need to act as a granny-substitute. ‘Granny-like’ services would be provided without strings; available as long as they are needed; reliable, non-threatening, and flexible; offered in the home; based on a shared understanding of good-enough parenting and shared standards of care; and responsive to the needs of the whole family, not just the child.
There is a long way to go before we meet the challenge of matching up to granny, but the goal is important—and not only for future generations of parents and their children. For the achievement of proper support for mums and dads will mark another stage in the long campaign to include all people with learning difficulties as full members of society.