Talking Sense - Volume 45, No 1, Spring 99
All parents expect to care for their children. But parents with severely disabled children face a very different situation – not for them the joys of watching their children take measured steps towards independence. How does caring for special children affect parents’ lives? Hilary Todd met some of the families who care.
Hannah Levey had a premonition something was wrong with her first child before he was born. Even so, nothing could have prepared her or her husband, David, for what followed. ‘When Joshua was born he was a funny colour, his ears seemed wrong somehow and he had a runny nose. Then we noticed he could not feed properly,’ said David. At two days old, Joshua was diagnosed as having no link between his oesophagus and stomach; during surgery to correct it, the surgeon also noticed that a main artery went the wrong way round. These and other symptoms were pieced together when Joshua was five weeks old – he has CHARGE, a rare syndrome which affects hearing, sight, the heart, nose and other functions.
Catching rubella in pregnancy gave Barbara and Tom Scholten some time to prepare for the possibility of a disabled child. But although Anneke is now 26, tears still come to Barbara’s eyes when she recalls the tiny baby who was taken from her and placed in intensive care in another hospital for assessment. First a heart defect was diagnosed, then Anneke’s sight problem, then at a few months old, she was back in hospital with septicaemia. Anneke’s hearing loss was diagnosed later still.
Many parents use the same word –‘nightmare’ – to describe those first weeks and months of trying to find out what is wrong with their child and adjust to it. It is a time not just of intense anxiety, but, for many, a time of repeated shocks as more impairments are observed and diagnosed. ‘You are just recovering from one blow when the next one comes along. It was a time of utter darkness,’ says David Levey. Joshua, now five, has had eleven operations to correct various defects, most of them in his first year. David Brown of Sense’s Family Centre in Ealing sees parents’ pain and anguish. ‘They haven’t got the baby they expected and it can take time to accept the situation. At this stage some parents just turn off all hope for their child as they have had so many knocks.’
Hannah and David Levey admit that, in a sense, they were lucky that Joshua’s condition was diagnosed early; ‘At the time the label didn’t seem to help, but later it made it easier to get information.’ Other parents are less fortunate. ‘Parents are often desperate to understand what is wrong and what caused the problem’, says David Brown; ‘yet we are seeing many new syndromes now and sometimes even the experts can’t tell parents what to expect. In some cases parents’ need to know can become an obsession and can even block the need to look ahead.’
While living through this emotional turmoil, parents have the added strain of working out the needs of a baby they don’t yet understand. ‘Joshua just cried all the time when he was a baby,’ says Hannah Levey; ‘all we could do was hold him, because we realised all he had left was his sense of touch. We also realised he was very sensitive to our moods, so we decided we had to be positive; we needed him to be happy.’ Parents instinctively get most things right, but David Brown sees many who are riddled with doubt about their own abilities. Gini Cloke, whose rubella-handicapped son, Ian, is now 36, recalls her time as a new mother. ‘I don’t think I made a very good job of it,’ she says, self-deprecatingly. ‘Sometimes the most positive thing I do is to give parents a pat on the back,’ says David Brown; ‘it gives them the confidence to go on.’
Hard work, slow rewards
On top of the anxiety comes the sheer hard graft of bringing up a disabled child. Some parents with disabled children never get a night of unbroken sleep even when the children are teenagers. Feeding difficulties are equally common. ‘Anneke always had feeding problems and still does,’ says Barbara Scholten; ‘I had to feed her until she was eight, and, as she would not bite into anything solid, she always had to have special food.’ Toilet training is established late, often seven or eight, and some children never gain control. Others with restricted mobility need to be lifted, causing chronic back problems for parents. The demands are relentless and parents rarely get a break; ‘Who would want to baby-sit?’ as Gini Cloke put it.
Finding a means to communicate is another major challenge. ‘You just have to guess what they need,’ says Gini whose son Ian neither signs nor speaks. ‘There was no help in those days, so when he was labelled mentally retarded and uneducable, I just had to accept that.’ Anneke, too, has severe difficulties, not because she can’t communicate but because, frequently, she won’t.
Parents are often reticent about the toll that these anxieties and relentless physical demands make on them. ‘It’s your responsibility and you just have to get on with it,’ would be a common response. But David Brown sees the effects; after years of caring, many parents are severely run down and prone to illness themselves.
Meet the professionals
Much expert help is now available but that expertise has to be found and harnessed. ‘You have to look for help, it doesn’t come looking for you,’ says Barbara Scholten. Simply contacting and co-ordinating all that help is wearing. Hannah and David Levey counted over 20 specialists contributing to Joshua’s care: ‘Sometimes it feels like a full-time job just communicating with them all.’
When you ask about the help they have received, it is disturbing how many times parents use words like ‘fighting’ and ‘struggling’. ‘Our problem was that Anneke didn’t fit into any neat "box" so we had to fight for the help we needed,’ say Barbara and Tom. One battle was to get Anneke’s school to provide her with a special diet. Gini was upset by social workers’ superficial assessments; ‘My house was always clean and Ian was well turned out so everyone assumed I was coping.’ And a few professionals can be breath-takingly insensitive. One parent of a multiply-disabled child was told by a paediatrician, ‘There’s no hope for him. Put him in an institution and forget about him.’ Even the most well-meaning professionals tend to look at a child only from the perspective they are trained in. The child becomes an ‘eye case’ here and a ‘speech problem’ there, which can be very demoralising for parents.
Putting relationships under pressure
Not surprisingly, relationships between couples change when a disabled child comes along. The child becomes the focus of attention and energy and couples find they have little time for each other. For every couple like the Scholtens and Leveys who negotiate that transition with understanding and mutual support, there are others whose relationships crack under the strain. ‘As I saw it, Barbara’s job was to look after Anneke and mine was to look after her. But I can see why some men just walk out,’ says Tom Scholten. ‘Perhaps it’s harder for men – I know I was well trained to have a stiff upper lip and I bottle things up as a result.’ Much as they love their children, many parents speak of feeling trapped by their responsibilities. As Tom said, ‘When Anneke was still at home with us at the age of 26, I thought "I don’t want it to be like this"’.
Financial pressures can add to the strain. Few mothers of young disabled children are able to work and disability brings many extra expenses that benefits only partly cover. Many parents end up fundraising to meet the costs of special treatment or provision. With all these demands on them, some parents feel guilty that their other children get less attention than they deserve. Many feel too that their identity has been eroded by the demands of caring; ‘I stopped being me several years ago – I’m so and so’s Mum’ is a cry David Brown hears all the time.
Caring for teenagers – and granny
It is not just in the early years that parents struggle to cope. Both Gini Cloke and the Scholtens hit their biggest challenges when their children reached adolescence. ‘Ian’s behaviour became more difficult. He would get frustrated and angry and bang his head against the wall. He was so big and strong that I couldn’t manage him,’ says Gini. Anneke started to refuse food, and eventually liquids too, and withdrew into herself. ‘We were terrified that this was anorexia,’ says Barbara who recalls one rubella-handicapped girl who starved herself to death. From the age of 16 until 26 Anneke lived at home, supported by various programmes that eventually pulled her back from the brink, but they were clearly harrowing and exhausting years.
The middle years can be doubly tough for carers, many of whom find they have to look after elderly relatives as well as their teenagers. As Anneke was going through her biggest trial, Barbara took on the added responsibility of her own mother who, now 87, is blind and very unsteady after two hip replacements. Barbara devotes every Saturday to her mother who still lives in her own home.
Support for carers – the big and little solutions
What really helped these carers to lighten their immense loads? Some answers were fairly obvious – good local services and schools, respite care, the support of other carers in a similar situation. For Gini Cloke the big breakthrough was getting Ian into a Sense group home 11 years ago and watching him flourish as, at last, a method of communication was established. ‘Ian has become a different person; his difficult behaviour has gone, he has more confidence and self-worth,’ says Gini. The Scholtens, too, finally found the right group home for Anneke where she settled happily last autumn. ‘Getting the funding through for her placement was better than winning the National Lottery,’ says Barbara. Joshua is exceeding all expectations at an excellent school for deaf children.
But some of the other things that helped were surprisingly simple. When life was at its darkest for the Leveys, one surgeon, breaking more bad news to them, remarked ‘But you have still got a beautiful little boy there’. As David Levey explained, ‘Suddenly we saw he was right; you can be positive, and we saw the benefits of that in Joshua – he picked up our mood’.
David Brown recognises the truth of that. ‘For many carers, what counts is not finding the right professional to support them but finding the right person. What families really value is the professional who is genuinely concerned, is prepared to go the extra mile and who says "We can work this out together".’
