“You must be a saint!” How many times have you heard that? And are you a saint? Of course not, families of children with multiple impairments are ordinary people, getting on with extraordinary lives, as they tell Sarah Butler.

If you have a child with multiple impairments, what is your family life like? A foolish question, maybe. We all know that no two families are alike – the make-up of the family, the personalities, the nature of the impairments, the level of support around the family, all are unique. Yet such families do frequently have much in common.

First and foremost, life is often incredibly hard work. It can also be distressing, frustrating and isolating. As families talked to me, I began to ask how they felt about me describing this rather bleak picture in our Talking Sense publication. Unanimously they said that they wanted me to tell it as they had told me. Yes, they loved their children, and derived great joy from them at times, but that didn’t make their lives easier or enviable.

Sue Turner is the mother of four sons, two of whom are deafblind with other impairments. She says “I think it’s made people think I’m something fantastic. I’m not, I’m exactly the same as everyone else. You have no choice.” Sue and her husband Chris see themselves as normal people, far from perfect, who are dealing with family life as best they can. It’s a juggling act, and Sue says “I think that people forget that though you’ve got children with disabilities, it doesn’t mean you’re immune from other problems. My older son is dyslexic. I have a sister with mental health problems whom I’m advocate for…” And Sue’s mother is now too frail to live independently, so she lives with Sue and her husband.

Challenging the whole family

That’s the thing about families, they consist of parents, siblings, grandparents, uncles and aunts, all of whom may be affected by the demands a child with special needs makes on the family.

The greatest strain often falls on parents, not least because they generally worry more about how their unimpaired children are coping, than about themselves. They fear that they have deprived their children of attention, or activities, or exposed them to too much distress. How do children cope?

Very young children often make no mention about claiming the attention they desire. Simon Howard and Flo Njeru have two daughters. Jessica is four, and has CHARGE, and Ellie is just two. “We both find that Jessica very much needs one to one attention. And Ellie’s a very bright and demanding child, who’s quite jealous and demands your attention all the time – for example if you’re dressing Jessica, she’ll climb all over you. So it’s hard for one of us to be home with both of them. I hope it’ll be easier once Jessica learns to communicate.”

Rachel and Dave Young also have two young children. Lexi is four, and has cerebral palsy, and Daniel is three. They are very close together in age, which Rachel says was actually a good thing: “Having Daniel so soon grounded us so we couldn’t get so wrapped up in Lexi. We had to maintain a normal family life for Daniel, and for us.”

This wasn’t easy, as Lexi needed a great deal of care. She didn’t sleep, day or night, and her health was often extremely precarious. In addition, she couldn’t tolerate a pushchair or car seat, so it was impossible for the family to go out. Rachel says that “the last three and a half years have been absolute hell, to be honest. Family life just hasn’t existed.”

Daniel, though, seems to have coped well with his family’s traumas. Rachel says “Daniel’s at preschool now, he’s outgoing, loves company, likes to be around other kids. He’s coped really well with never knowing who’ll collect him if I have to take Lexi to hospital.” If Lexi’s sick, Rachel lets Daniel be involved: “I don’t push it on him and it’s fine if he just walks out of the room, but if he wants to help, that’s OK.”

Angela and Ray Cowie’s children are older: Suzanne is 18, and Andrew, who has CHARGE, is 12. Angela remembers Suzanne asking Ray, “Why does Mummy keep crying?”, they couldn’t find a way of telling such a young child that her new baby brother might never come home from hospital. “How do you tell a five-year-old that her brother might die?”

Sue Turner’s four sons are now adults. She recently asked Daniel and Matthew what it was like for them growing up with their disabled brothers. They replied that when they were young they didn’t know any different, they thought that’s what families were like and apparently the only thing Matthew didn’t like was Ben biting his head!

Daniel and Matthew see advantages now to having two impaired brothers, they have children of their own, and say that they don’t worry about the things most people do, like whether their children are top of the class, or have to wear glasses, because they know there’s a bigger picture.

Sue, though, was painfully aware of what they were missing out on. “When Luke was young I found it incredibly hard to find time for everybody. We’d often had our evening meal at ten at night because there wasn’t any other time.” To compensate, Sue used to divide her time up strictly between the children, but there wasn’t a second left for her or her husband: ‘I never had any time for me, never.”

No time for yourself

Sue’s experience is very common. Many parents are so busy that they have no time to recharge their batteries or be someone other than a carer. Rachel Young says that even when she did have time to herself, she found it impossible to relax in Lexi’s first three years: “We tried everything from massages, aromatherapy, relaxing baths, getting out of the house one at a time, but it was so intense, we just couldn’t relax. I even tried an aerobics class to release some of the frustration, but it just killed me – I was exhausted!.”

So how do parents relieve the pressure? Chris Turner and Simon Howard admit that going to work is at times a relief. Chris laughs that he never had the Monday morning blues like his colleagues. But to a parent who stays at home, there may be no such escape, and some do collapse under the strain, undoubtedly. Many others scrape through, often by deciding consciously not to deal with their larger feelings and fears, but living life day by day, dealing with each event as it happens.

Sue Turner talks candidly about how hard it has been sometimes: “There were times when Luke was a baby when I really didn’t think I could go on any longer. That sounds really dramatic – but I used to go to bed and hope I wouldn’t wake up in the morning. I don’t think I was depressed – I was exhausted. I had three hours’ sleep a night, for several years. I psyched myself up in the end and told myself that lack of sleep didn’t matter – because if it did matter I was really ill the next day, and if it didn’t, I could carry on as normal.”

Sue’s parents helped out a lot, and in many families, it is the grandparents who help take the strain, though they may well also have jobs and other responsibilities. Until recently, for example, Rachel and Dave Young received little other support: “We wouldn’t have been able to get through without our family. We wouldn’t be here now, we’d probably have split up and Lexi would be in care. When I collapsed, my mum would take over and she was working full time; she’d break down on a weekly basis too.”

Relationships under strain

Although many parents pull together and work as a team, they may be so focussed on the practicalities of intensive caring that there is no space for them to support each other - let alone to enjoy each others’ company. Rachel puts it bluntly: “It’s a good job we had a good marriage before this because it would never have survived if it hadn’t been. I don’t know how we coped with each other through the stress and exhaustion.”

In other circumstances, friends might help take the strain, but living with multiple disabilities in the family can be an extremely isolating experience and friendships can be hard to maintain. Parents talk not only about the sheer practical challenge of leaving the house with or without their child, but also of others’ lack of understanding about having an impaired child in the family.

When I asked Sue Turner whether her friends had been supportive, she smiled wryly and said “Well, it sorted out who our friends were. I did have a couple of really good friends who were lifesavers, who would just call in and see me in absolute chaos, particularly with Ben and say `I’m taking Ben out for the day’. They wouldn’t ask me! So I could gather my strength again.”

Sometimes it’s not moral or practical support that parents want, but an ordinary night out with friends, though this too can be a rare luxury. Angela Cowie is typical: “We don’t go out to see friends with Christopher, except to our friend who has a disabled child. It’s not that others are judgemental, it’s the effort. Other people don’t visit us. I do mind that. I don’t know if they think we’ve got enough on our plate”

Friendships change, as families take different paths, and develop new priorities. Other people’s worries can grate on the ears of parents with bigger issues to deal with, as can their well-meaning suggestions. Even where friends are sensitive, it’s hard for them to understand life with a multiply impaired child. Says Rachel Young: “We have a completely different outlook to our friends, we look at them and wonder what on earth they’re worrying about.” She adds “Our friends haven’t really known what to say. One very good friend’s been very supportive. Others didn’t really understand the limitations on what we could and couldn’t do. Friends ask how Lexi is – but if they’re going to talk about anybody, they’ll talk about Daniel. It makes me a bit upset really.”

Shelter from the storm

If friends can’t understand what you’re going through, who can you turn to for moral support? Sue Turner describes her first contact with Sense, many years ago: “I’ve kept the first letter I received, from Norman Brown. He was a parent and I’d been told that deafblindness was so rare that there were no other people. But there were others! I didn’t have to explain, you know, all Luke’s funny movements – he knew that deafblind people did that.”

Sense gave Sue advice on the best places to get help and sent someone to work with her. ‘Together we set up a plan for the day. And although I was still working as hard, I was actually achieving something, so my frustration went. I knew what I was dealing with, it was a big eye-opener to me.”

Sue went on to set up the local branch of Sense, where parents could meet and talk about their children and their lives. “It’s heartening to know that your child isn’t the only one that’s got awful behaviours, which to most people aren’t acceptable. Or even more than that, the things we find really difficult with Luke in particular is that he has a lot of repetitive behaviour. I know it’s incredibly hard to stop, but I find that really hard to deal with.”

Sue comments that “because we’re proud of our children, we want to say all the good things and what we really should be saying are the bad things as well. It’s hard to talk about the real difficulties when you meet other parents.”

Sense hasn’t been Sue’s only source of support. Although her experience of Social Services and the Health Service has been as mixed as most people’s, she does say that in the early days, when she had three boys under four, she got just what she needed: “Somebody must have come and seen that I was drowning and I had free home help for one day a week. It was an absolute lifesaver!”

Angela Cowie, in her turn, sings the praises of an Advisory Teacher, who years ago helped to get Christopher into school. “She’d call in on her way home from work and she got us the Intervenor.”

More recently, Angela has been working with Mary Foster of Sense’s Family Education and Advisory Service: “We knew about Sense all these years, but didn’t realise they’d come to us, they were too far away for us to go.” Since meeting Mary, Angela says “She’s made a real difference, what a relief. She’s a godsend!”

The Youngs’ Social Worker put them in touch with Sense, but left when Lexi was a year old, “and that’s when all our troubles started. Lexi wouldn’t go in a pushchair or anything, she had to be cradled or she’d be too distressed. Even changing her nappy was terrible. She didn’t sleep, so we didn’t sleep and at the same time we were fighting for a decent care package, even going to our MP and getting solicitors involved. No one believed that Lexi didn’t sleep at all.” Now, though, they have a full care package, five nights a week: “That’s saved us basically, because we were on the verge of collapse. Now instead of being a full-time Carer, I can take a step back and be a proper Mum. Before, I couldn’t do the housework, go to the shops, take Daniel out”

Mary Foster finds that parents aren’t always worked with as partners or really listened to. Professionals can sometimes be unhelpfully negative too, in her experience. When Mary works with a family, she’s “trying to make a positive profile of the child. Medics often concentrate on what’s wrong. They tend to call it `breaking bad news’ I say `let’s call it sharing information on the child.’”

Needing to know

Diagnoses can be enormously traumatic times for parents. Many parents keep going on a day to day basis by focussing on practical tasks, and pushing their fears and grief to the back of the mind. The fragile equilibrium they have struggled to maintain may be shattered by being confronted bluntly with their child’s problems.

On the other hand, not having a diagnosis is possibly even harder. Sue Turner says that “the worst feeling is when you know there’s something wrong with your child and you can’t get through to the doctors. The worst year of my life was Luke’s first year, when people were denying he had anything wrong. I knew that he had. The hospital actually wrote to my GP saying `Do not send us this neurotic woman again’.”

Angela Cowie has faced this reluctance to listen to parents too, only recently: ‘Christopher had been pushing and poking at his eye for weeks, and I’d been trying to get someone to take a look at it. I just don’t think they took it seriously – the amount of poking he was doing. The said it was just stimulation, but it was different. Then we realised when we were feeding him that he couldn’t see us – he was feeling for Ray’s arm. We took him to A & E, but it was another four days – Wednesday – before he saw the specialist, and the following Monday till they operated. He had a detached retina, and now he’s lost all his sight. I felt devastated – it was like when he was born, all over again.’

Even when professionals are sympathetic, parents can find themselves in unbearable situations, facing terrible choices about their child’s future. Lexi Young’s health had meant many emergency visits to hospital in her first three years, but as her mother Rachel describes, it didn’t prepare her parents for the crisis which struck them this time last year. “Lexi was critical, in intensive care for three months. It got to the stage where there was a choice between letting her die, or trying something else. To see your daughter in that state was absolutely horrendous.” To the Youngs’ relief, the treatment they tried did help enormously, and she says ‘since then we have found a daughter.”

Families go through such tough times with their multiple impaired children that they quite reasonably become enormously protective – their child’s needs are so specific, and the child so vulnerable, that they may feel they are the only people who can look after them. They may also feel guilty about allowing others to care for their child. Mary Foster, of Sense, comments “Letting go is a problem for many families. They quite understandably think that their child needs to be looked after in a particular way, they’ve very rarely been away from them. They need a lot of encouragement to let go.”

It is clear that family life can become so completely focussed on the impairment that there is no time to enjoy the pleasures of parenthood. With the privilege of hindsight, though, Sue Turner advises “Enjoy them as a baby and as a child. With Luke I worked so hard I didn’t have time to enjoy him. With Ben I’d worry so much nobody would like him – dirty, snotty and hyperactive. But now he’s likeable and popular. You mustn’t judge what they’ll be – their personality will come through.” And Sue concludes: “I do feel that I’ve grown as a person. I think it’s been really good for me. But having said that, it’s been bloody hard work!”

Work and money

Fifty-one per cent of families with a disabled child have financial difficulties and two-thirds link this to their child’s disability. Almost a quarter have problems at work because of their caring duties.*

Having a child with multiple disabilities may turn your finances and your work upside down. You may have to give up work, or you may have to adapt your career if you need to be at home a great deal. Over the long term, this can mean that your family’s income is significantly affected.

Simon Howard works four days a week, and his partner Flo Njeru works three, in order to share the care of their two daughters. “Our part-time working patterns have an obvious impact financially – Flo’s decision to work part-time was based solely on Jessica’s needs. We’re lucky not to have a big mortgage. Flo was able to take a year off when Jessica was born, though the last six months were unpaid, which clearly had financial implications.”

Dave Young’s company gave him a couple of months’ unpaid leave when Lexi was born, which took the pressure off so that he didn’t have to worry about losing his job. Since then, Dave has changed his job so he can work two or three days at home a week, and can offer Rachel more support. “It’s not all a bed of roses though, as when Lexi’s in hospital, Dave has to try and keep up with his workload at night.”

Rachel had intended to return to work after Lexi was born. But “even now I can’t work because you never know what she’ll be like. So I’m going stir crazy at home. I’m itching to do something. Though I wouldn’t have it any other way, because Lexi has a limited life expectancy.”

Financially, the Youngs have lost out with Rachel not working. She says “We do have Lexi’s benefits, which help. We tend to live on that, and Dave’s salary pays the bills and mortgage. There’s nothing to spare – it’s a huge change in lifestyle. And we’ve had to move, because our old house wasn’t suitable for adaptations, so we had to increase the mortgage.”

Angela returned to college and took an National Nursery Examining Board (NNEB) course seven years ago; since qualifying she has worked as a learning support assistant. However, when Christopher lost his sight at Christmas, his school would only allow him to attend if he was accompanied there and back, so Angela had to give up her job to take this on. She comments ‘I miss the social life, meeting other people. I’m still seeing people at Christopher’s school, but it’s not the same wide social circle.’ Financially, of course, they are also affected, though Angela always knew that something might happen to stop her working, so she put her earnings aside.

*Contact a Family survey, No Time for Us, 2004.

Relationships

Contact a Family surveyed families with disabled children last year*. This is what they found:

• nearly half feel that having a disabled child has caused problems in their relationships.
• nearly one in ten feel that it led to separation.
• over one in six are bringing up their child alone.
• nearly one in four had received professional relationship counselling. Seven out of ten had found it helpful.

When asked what helped relationships, the most important factors are:

• time away from the child to be with their partner
• the ability to communicate openly
• sharing the care of the child between the parents.

What helps?

Overwhelmingly, parents say that a break or respite care makes the most difference to their family lives.

They also give high marks to emotional support or counselling, and to information around diagnosis.*

*Contact a Family survey, No Time for Us, 2004.

Trends

When Sense was first set up in 1955, congenital rubella syndrome was the most common cause of dual sensory impairment - but since widespread vaccination, it has become increasingly rare.

Recently, growing numbers of children born prematurely, and with a range of syndromes, and surviving, have meant more children living with multiple impairments often including sensory impairments. They often have complex care needs, and life for their families may be extremely challenging.

Sources of support

We have only described Sense’s services briefly here: if you are interested, or would like more information, please contact us.

Sense’s Family, Education and Advisory Service

 Our specialist advisory teachers and paediatric therapists offer assessments and support, working in partnership with parents and professionals.

Sense branch

Joining a local branch can help you to meet other people in similar situations, share information, and campaign for change.

Sense Family Network

Set up by families, network members take part in family events and activities, meet other parents, carers and families, and link up with Sense branches and other voluntary organisations.

Sense’s holiday programme

We run holidays for multi-sensory-impaired children and adults, giving them the opportunity to relax, have fun and try something new, and offering families a well-earned break.

Saturday Clubs

Families with children with multiple disabilities get together at Saturday Clubs, having fun together, sharing their experiences, and offering mutual support.

It’s also worth plugging into other networks, for example:

The CHARGE Family Support Group
Contact Carol Thomas, Langdale, 5 Botham Hall Road, Huddersfield, HD3 4RJ
Web: www.widerworld.co.uk/charge | Tel: 01484 646828 | Email: cajthomas@btinternet.com.

Usher UK, for people with Usher and their families.
Contact Angela Stafford at 21 Springcroft, Woodcot, Gosport, Hants, PO13 0YW | T el: 01329 284 318.

Contact a Family, which may put you in touch with other families in a similar situation:
Web: www.cafamily.org.uk | Tel: 0808 803 3555 (Monday - Friday, 10:00 - 16:00)

Huge thanks to:

Sue and Chris Turner, parents of Daniel, Ben, Matthew and Luke.

Angela and Ray Cowie, Parents of Suzanne and Christopher.

Rachel and Dave Young, parents of Lexi and Daniel.

Simon Howard and Flo Njeru, parents of Jessica and Ellie.

© Sarah J Butler