Having a disabled child in the family places particular pressures on fathers. Francesca Wolf reports. Men have had bad press recently. Castigated for earning more in the workplace, doing less in the home, and being emotionally inhibited, it seems they can’t win. But, as in most things, the picture is more complex than at first appears.

Certainly men in families where there is a disabled child have an extraordinarily difficult role. And talking to fathers and professionals in the field for this article I was struck by two things.  Firstly, how each story is individual and different, so it can be hard to speak of `fathers’ as a group; and yet despite this, how certain themes, situations, strengths and difficulties do emerge, there is some common ground.

Beginning to talk

At a 1993 Sense Usher conference in Monmouth, the women were doing most of the talking and one mother threw out a challenge to the men.” Where are you when we go to the clinic, hospital, talk to the doctor?”, she asked.

Later, the fathers went off separately as a group. Mary Guest, Usher specialist says, “What emerged were some very strong feelings. Many of the men felt that their role was to earn a living, provide for their family, keep things ticking over, and not give way to their feelings. One man was so affected that he started weeping, and the situation of a man being so openly vulnerable released a lot of pent-up grief that fathers said they hadn’t been able to express before. They had felt their chief role in the family was to be strong and to have a protective, providing role.”

“Lone fathers, in particular, can suffer huge isolation because informal and formal support mechanisms that exist are more orientated to women”

To some extent things have changed since then, but still in families where there is a disabled child, fewer mothers work outside the home. Even when a child is in a residential school it can be hard to hold down a full-time job, for most Mondays and Fridays are involved in arrivals and departures. This places the strain of being the breadwinner more heavily on men’s shoulders. The result is that they are around less in the daytime when there are home visits, and possibly less involved with day to day family matters. They may feel sidelined, on the edge. At the same time they may lose opportunities in the workplace because of the difficulty of going for promotions that would mean a change of location. 

Relationship pressures

For some men, too, work can act as an escape, both practically and emotionally. One Sense professional says that many fathers suffer huge disappointment at the loss of the child they thought they would have, the perfect child who could run about and play football with them. This is particularly the case when it is the first child who is disabled. In addition to this, their own needs are often ignored. When all attention is focussed on the disabled child, dads can get left out both as men and as fathers. Sex may be the first thing to go, and the loss of a physical relationship can further exacerbate difficulties in a relationship. 

Philippa May, Regional Advisory Officer for Sense South West, says, “For some fathers it is just too much and they leave the family situation in body or spirit. When fathers are absent, practically or emotionally, this places a lot of stress on the mother who can feel resentful. The father may feel guilty because he knows in his heart he should not be detaching himself. But they turn off because they simply can’t cope, and also because they feel their wives are turning off from them.”  

Inevitably some families break up, there is a high incidence of family breakdown where there is a disabled child, and usually it is the father who leaves. But there are also fathers who are lone parents and although this is not a large group, they often do very well. For any lone parent accessing support networks is hard because of the difficulty of getting respite care. But lone fathers, in particular, can suffer huge isolation because informal and formal support mechanisms that exist are more orientated to women.

Keep talking

One Sense professional says that many of the fathers she meets are 'doers’. They like something practical to do and are often good at goal setting and problem solving. But a recurring theme is that men generally (it’s obviously not true for all ) find it harder to express their feelings. Some fear that it will be like Pandora’s Box – once the emotions are released will they be able to put the lid back on? This is where contact with other men in similar situations can be so helpful. Certainly some of the dads in the accompanying case histories have found that talking to other fathers in a safe, secure environment has been hugely beneficial. 

Communication seems to be the key generally. Mary Guest says that, “ When a couple get a diagnosis and other news together, discuss it together, talk about other issues, cry together,  it is very strengthening, and that is when families hold on and grow. But when disability polarises, I have my role and you have yours, so get on with it – you have the seeds of breakdown and resentment.

“Sense needs to confirm the joint role parents have and involve both fathers and mothers as much as possible. We realise that sometimes fathers see things in a different way and we try not to fall into the trap of listening just to the one who does most of the talking (often the mother).”

Sense also encourages other professionals to involve both parents. It is very easy with all the pressures of life for the one who has got less to do outside the home to take responsibility for certain areas, and for the other to remain in the background.  Women may need to give up some of their space to men.

Sometimes fathers are not present at the diagnosis or when other important news is given but it is vital for both parents to be there. Otherwise, says Mary Guest, “One has the role of being the bearer of bad news and it is easier for the other to deny it. This can be a source of friction. But if both people are given the information on an equal basis together they have some common ground and the chance to talk and ask questions.” 

Things are changing

But things are undoubtedly changing. The climate is different than it was, say, 20 years ago. Support networks where parents can meet and exchange views can reduce some of the isolation and a number of fathers are becoming increasingly involved in all aspects of caring for their disabled children.

This, in turn, can throw up fresh issues. For example, one raised by some fathers was the problem of physical care for daughters who are multiply disabled. When a father has been very involved in all aspects of caring and there is a strong bond, the approach of puberty can be troubling. Most men would find it hard to deal with the practicalities of menstruation so, having struggled to get involved in personal care in the first place, they may suddenly have to retreat and give the burden of care back to the mother.

Robert Spigel says that when he takes out 11-year-old Elenore, “Toileting is a problem, because I can’t take her into the Men’s or go into the Ladies myself. I still bathe her when Jackie works abroad but there may come a point where I shouldn’t do this. Also menstruation will come up soon, and I don’t think I could handle this.“

Similarly, Peter Brill, who can do just about everything for his multiply disabled daughter Josephine, says, “Physical care is a difficult issue as your child gets older. Josephine will reach early puberty and I can see it will be quite awkward. I already find it uncomfortable.”

The fathers in these case studies are not necessarily representative of all fathers of disabled children. “I can only offer you my view,” says Robert Spigel, “I can’t offer advice to fathers generally”, while Glen von Malachowski says, “I don’t have any pearls of wisdom. It’s so idiosyncratic and different for different people depending on their personality type.”

Those men who are involved with Sense or other voluntary organisations are perhaps  more likely to be involved anyway, to talk about their situation and be aware of issues. Nevertheless, I was struck by how positive many of their accounts were, and of the responsibility they took in all areas of family life. The fathers all felt the challenges and demands had both widened and deepened their experience of life.

Life story 1

Robert Spigel is the father of Eleonore, 10, who was born with congenital difficulties. Elenore has two older brothers, Barnaby and Toby.

“Of course there has been stress, and rows sometimes, but there are stresses and strains in any family”

“The birth was normal. Eleonore’s condition can’t be detected in amniocentisis , so it was a bolt out of the blue. We only discovered things weren’t right when she didn’t feed well and screamed in the sunlight. At first we didn’t know what was wrong, but a year later we learned it was a rare condition called Pallister-Killian syndrome.

I had been overjoyed at having a girl. It was fabulous - I had no sisters, went to an all male school, so half the population was missing throughout my formative years. Now I sometimes thought: serve you right; you’ve got one and it’s not how you thought it would be.

In some ways it was good not having a prognosis because you don’t give up on anything. Eleonore was born without any muscle tone but now she can walk two or three miles. She can work the video, get the radio…if we’d been told she’d never do anything we probably  wouldn’t have bothered developing her. The first time she got lost in Tescos half of me was delighted. I thought: she’s a kid - she’s wandered off! She has developed a lot.

When we came back from France (where Eleonore was born) Jackie was working but I didn’t have a job. So I was suddenly in an environment of mostly women – mothers – and in the world of disability. Two big changes at once. I don’t know if it’s coincidence, or connected to Eleonore, but I decided against going back into business and I’ve worked in the voluntary service since. Jackie runs her own business.

Of course there has been stress, and rows sometimes, but there are stresses and strains in any family. Nowadays Jacqueline and I do certain things together, certain things together with Eleonore and certain things on our own, we have some separate friends. It’s quite a nice mix, and maybe Eleonore has been the catalyst for that.

I love going out with Eleonore and I love people seeing me with her. I can’t work out whether that is because I want to control her more than I can Toby and Barnaby or whether it’s a sense of achievement because I’ve persevered and now she can sign, walk, and stop at kerbs. Once, when I was with her on a bus, a bloke came over and said ‘ You have a very big heart’. I felt very touched.

She has changed me, I’m more considerate, more patient. Eleonore has given me a goal. It’s not as if I didn’t do anything with the boys but she requires a greater degree of intervention and support and it’s satisfying to see results.

I tend to think about why I behave as I do and am known among friends as being coldly logical. Sometimes I wonder – am I logical as a way of not having to express my emotions? I don’t break down and cry. People tell me I should relax but generally if there’s a choice between letting my hair down and standing in the corner of the room, I’ll do the latter. I can’t do that with Elenore though, I can’t walk around with her in town and remain anonymous.

Life story 2

Jeremy Akers is father of Thomas, 15, who has Usher syndrome.

We always thought there was something amiss but didn’t find out Thomas had Usher until he was five. We read an article and thought he’d better have the test. Just when we were getting the deafness sorted out the Usher diagnosis came along.

I immediately went into practical mode, getting as much information as possible. Julie was extremely upset by the diagnosis. It acted as a catalyst, and although blaming our marriage break up on it is wrong, it was an important moment. When you are given news like that you cope as best you can. We dealt with it in different ways at different times.

Soon afterwards I was made redundant which was more stress. I got a job in South Africa for 10 months but then realised it was no good running away, I had to face up to things.

We got divorced, but I always lived nearby and Julie and I shared care until the last few months when Thomas has been with me (at weekends, he boards in the week). I’ve been very involved and we are more like brothers than father and son. We sit around and chat. I’ve got a big family and we see a lot of my brothers and their children too. Perhaps I’ve been too soft and spoilt him but then I’m a soft person anyway.

I used to work for the local authority but now work in a private construction company. I’ve always consciously picked flexible jobs so I can drop anything if there’s a problem. Tom’s becoming more independent now so it’s not so vital, I’m more of a taxi driver!

We went on some Usher weekends and at Monmouth the dads went off together. I’m not one for baring my soul, but it was useful to listen to others in similar situations. Men tend to have a stiff upper lip, six men together may discuss the weather, then go to the pub and it’s harder for us to let out emotions in public. I’m like that, I still play everything close to my chest.                                    

Life story 3

Glen von Malachowski is the father of Holly, 14, Joseph,12, and Thomas, 5. Holly  has very limited movement and doesn’t walk. She has no language, great difficulty chewing and swallowing and is dependent on adults to feed her. At present she is a weekly boarder.

Holly was over three months premature and was in an incubator for a long time. She needed radical heart surgery and for the 24-hour period after the operation her heart stopped for about 22 minutes. We were told that she would die in our arms, but she didn’t, she fought on.

When she came out of the incubator, they thought we would reject her. But we were simply overjoyed that our child had survived and would have done anything. They told us she had brain damage and “may experience a little stiffness… she won’t be a ballet dancer.”  However the scan (we saw it a year later) already showed enormous parts of her brain were completely destroyed.

We got together with other parents in similar situations. But only two men came to meetings, most of the others did practical things like sponsored runs. Many felt ill equipped to deal with the emotional side and a number of marriages broke down, partly because of the men’s inability to talk about what was happening emotionally.

I went through denial, depression, anger, loss. Eight years later I still couldn’t watch a soppy movie on TV because it brought feelings to the surface I couldn’t cope with. Or I’d go into Macdonalds and see a dad doing things with his daughter I’ll never be able to. The sense of loss  goes on and on and is repeated at different milestones as it unfolds over time. With other children your life is turned upside down for a while but in your heart you know it’s finite. With Holly it’s forever.

It’s a unique pressure which is hard to understand unless you’ve been through it. The stress and strain are constant. Holly is totally dependent on others for feeding, toileting, to be turned in the night. It takes two to lift, bath, toilet her and maintaining her dignity is an issue. That level of dependence can put stress on relationships and  jobs and make it very difficult to lead a balanced life. Lots of people don’t manage it.

In the early stages we were obsessed with treatments. We took Holly to the Peto Institute, did the Philadelphia method, remortgaged the house to buy equipment. Then we said, hang on, this has completely consumed our lives, we need to get things in harmony. It’s calmer now and at the moment Holly enjoys home and school.

In many contexts it’s still unacceptable to talk about feelings, but as I work in the field of teaching and social work it’s been slightly different. My employers have been very understanding, but there are still many insensitive employers around.

It’s idiosyncratic, and different for different people. Perhaps it’s mostly to do with people’s personality types. You have to be able to turn off and trust others, otherwise you’d be worrying all the time. Some people simply can’t switch off.

You’ve also got to look at the long term and conserve your energy, pace yourself so that you don’t burn yourself out at the first battle. It’s a marathon, not a sprint.

Life story 4

Tom Lilley is the father of Janet who has Usher syndrome and her older brother, Robert. Janet  is now in her 40s and has two daughters.

“I’m not exactly an emotional person but I knew support faciilities were there if I needed them”

I felt a certain amount of panic in the heart when Janet was diagnosed, but once you realise the situation you’ ve got to start doing something positive. I was very concerned with the educational aspects and wanted to get in as much as possible, to make the maximum of her potential. Janet went to boarding school at two and a half, and weekends were spent reinforcing what was done at school. Most of the time was spent developing her language and other skills

Another important thing is to make sure your child is socially acceptable. My wife played a major part in the social and disciplinary aspects of upbringing and I was sometimes a bit of a foil but fathers often spoil their daughters!

I think Janet has made me more tolerant, and more understanding of other disabilities. It helped in my work too. I lectured in further education and then was an HMI for 10 years visiting colleges and it helped me realise the importance of adequate support  for students with disabilities.

I’m not exactly an emotional person but I knew support faciilities were there if I needed them. Obviously there have been strains, but my wife and I have just had our 50th anniversary so that shows stickability! Having a handicapped child can help you establish your priorities. Compared with what they face, one’s own personal little problems fade into insignificance.

Life story 5

Peter Brill is the father of Asher, 18 months, and Josephine, eight years-old, who has multiple difficulties due to cerebral palsy. She uses a wheelchair and has no formal language.

Within moments of Josephine’s birth we knew all was not well. After four days we learned  she was profoundly brain injured. My father is a doctor, so I responded both emotionally and as someone who knew things didn’t look good medically.

You go through a grieving process but I didn’t have any friends I could talk to. It’s very hard to talk to people who haven’t gone through it. The one thing you don’t need is sympathy: it doesn’t move you on. You need support, help, guidance, but not sympathy.

After several months Sheila and I were struggling. It puts massive strain on your relationship because you are simultaneously battling the outside world and coming to terms with what is happening. The local authority suggested counselling and we thought, why not?

It was hugely helpful because the counsellor had no personal agenda, and he asked the right questions that pushed the right buttons. At first we wouldn’t talk to each other, we were talking to him. Nine months later we’d talk to each other, ignoring him. At that point he said ”You don’t need me any more.” It’s all about communication, being able to talk about how you feel, the situation, your child, everything.

We also set up a parent support group in Redbridge. There were seven families, from different backgrounds, with children with varying disabilities from autism to cerebral palsy. That was the first time I’d met fathers in similar situations. Some had gone through the traumas I’d experienced  and they were all very open about their emotions. It was invaluable.

I started a new job shortly after Josephine was born but for months didn’t tell anyone I had a profoundly disabled child. One day the counsellor said ”Why on earth aren’t you telling anyone? Why put yourself under this unnecessary pressure?“ The next day I told my boss and he responded, “I’m sorry. My problems must seem so trivial." People often say this but all problems are relative.

The situation can put pressure on you as breadwinner because you feel you have to ensure job security it makes it harder to plan a career and you can’t afford to take risks. It’s easy, too, to use work to hide from the situation, emotions, constant battles. I know there were occasions when I did this.Work was a convenient way of removing myself and in the first year I had a very limited bond with Josephine. It was unfair on Sheila, but easy to do.

After a year we moved to Bristol. We used the Woodside Family Centre a great deal and were also asked by  Scope to set up a father’s group. We’d have a session talking about our experiences, feelings, relevant issues, what might happen, and then go to the pub for a while.

Josephine has taught me never to take anything for granted. She’s given me new life experiences and I feel my experience can help others so it’s added an aspect to my life. I’ve also learnt to love Josephine which hasn’t always been easy. I know some parents don’t ever come to terms with it.

You have to fight for everything and become quite belligerent sometimes: you don’t suffer fools gladly. Emotionally it’s very hard, a constant rollercoaster. It  also makes you terrified about  having another child: Sheila’s pregnancy was nine months of pure hell.

It goes against the grain of most men to talk from an emotional perspective about their situation but it helps so much. Talking to another father who has been through something similar can switch on a light. So often men try to do it all on their own but they shouldn’t be afraid to ask for help. Going to groups and support groups can really make a difference.

This article appeared in Talking Sense, Summer 2001 Read other Talking Sense articles