The siblings of children with special needs have to cope with all sorts of different experiences. Francesca Wolf reports on the challenges faced by siblings and how they can be helped to meet them.

In most families siblings are a source of pleasure and pain. Brothers and sisters can arouse powerful feelings of love, hate, tenderness, rage, compassion, rivalry and jealousy. We play, compete, laugh, fight and make up. We may spend more time together than with our parents, and how we get on influences the people we become as adults.

All this is true, also, in families where a child is disabled. The balance though is different, more unequal.

In recent years there has been increasing research into the situation of siblings of disabled children. Thirty years ago Grossman found that half of siblings felt they were better off for having a brother or sister with a disability, and half felt they weren’t. Subsequent research has painted a similar picture. What has also emerged is that siblings tend to have similar experiences and needs, and that the type of disability matters far less than its severity.

Some variables, though, do have an effect. These include family size, difference in children’s ages, their personalities and their position in the family. Generally older siblings are most affected. Other factors include parents’ attitudes; the amount of care siblings provide; the mobility and sleeping patterns of the disabled child, and the degree of support for families.

Joys and sorrows

The voices of brothers and sisters of a disabled child express a wide range of feelings from positive to negative. It seems their experience can be complex, demanding and contradictory but not without its joys.

It’s a fine balance but I was struck, when speaking to siblings of deafblind children or adults for this article, by how many felt they had benefited in some way. Tom Price whose sister Susan has Sinca and is very disabled is “ tolerant of other children with special needs”; Ross, brother of Zara who has CHARGE is “kind and sensitive”; Matthew Turner, who has two disabled brothers believes it’s made him “a much nicer person”; Shazia, whose brother has Usher says she’s “a good listener”.

Such qualities are not to be scorned. Nor is the evidence merely anecdotal. Researchers have documented a range of possible positive effects on siblings including increased maturity, empathy, compassion, tolerance for people who are different, closeness and openness in the family, as well as the development of knowledge and skills. Many adult siblings say their brother or sister has brought something special into their lives.

Most siblings have some caring responsibilities, such as supervising or entertaining their brother or sister, getting them up, or making them snacks. For some this provides “…a sense of self-worth, of being needed and loved. This often led to some of the young carers taking up caring roles in future careers and employment.”

Moreover, it is siblings who often know and understand their disabled brother or sister best; who are most adept at playing and communicating with them and who, as they grow up, can play an important role as advocates and teachers.

Difficult issues

The difficulties can be many. In sibling workshops, individual accounts and research the following feelings crop up time and again: guilt, jealousy, fear, loneliness, sadness, embarrassment, confusion, anger, frustration, worry (about their brother or sister, their parents, the future), tiredness (broken nights) and excessive responsibility.

Family activities may well revolve around the child who has special needs. Obviously it depends on the nature and extent of your child’s disability but, if it’s severe, outings may be scarce or non-existent and mealtimes, nights or study time interrupted. Other children may lack privacy and the space to get on with their own things. They can feel lonely and that their needs and wishes are neglected.

“The biggest problem is not getting enough time or attention from parents," says Monica. ”One child gets a huge amount while the others get little. It’s very unbalanced. This can give rise to siblings feeling resentful or jealous as well as guilty about feeling this way.

“Sometimes, in order to get more attention, younger siblings copy the behaviour of an older disabled child. It is very distressing indeed to find your other child head-banging or moaning."

With older children problems sometimes come out at school says Jenny Fletcher, head of Sense West Family and Education Advisory Service:

“A significant number of brothers and sisters we work with get suspended or excluded from school at some point. In mainstream schools there’s a total lack of understanding of the negative effects of having a disabled brother or sister – that children may take out frustration at school rather than home because they don’t want to take it out on their parents or brother or sister."

In other cases children may become withdrawn, or feel excessively responsible for their brother or sister and parents. They keep feelings to themselves to shield parents from extra worry, or feel they have to be “good” at home or do masses of chores. They may “act both as carers themselves and as supporters to their parents, the main carers”. They can have very old heads on young shoulders.

Although this may have a positive outcome in terms of maturity or later career choice it may also mean they keep their own problems hidden, such as being teased or bullied at school which is something that siblings of disabled children commonly experience. They may also refrain from bringing friends home because of embarrassment about their families’ “difference”.

In a touching account an adult sibling tells of how as a child he didn’t invite a friend home due to his embarrassment about his sister’s Downs Syndrome, only to find years later that the same friend had a brother with cerebral palsy. “ We could have shared this but were both too afraid and confused,” he wrote.

Children may also keep hidden their anxiety about their disabled brother or sister’s condition and prognosis. Will I catch it? Is it my fault? Will he get better? Is he going to die soon? The biggest and most scary questions may go unvoiced and adult siblings often remark on how, lacking hard information as children, they invented explanations (sometimes wildly fantastic) and prognoses of their own. There is often fear and confusion.

As siblings grow up they may worry about genetic implications for themselves and their children; the reaction of future spouses; appropriate care for their sibling (this often starts at a young age); their role as parents age and die. It can be a heavy burden to carry.

Meeting siblings’ needs

As a parent of a child with special needs you may already be overwhelmed and it’s understandable if siblings’ needs are on the back burner. But there are things you can do to improve the lives of other children in your family.

Here is a list of suggestions that a group of older siblings put together:

• Be straightforward and open. Try to welcome questions so your child finds it easy to ask them. You should also give truthful answers and age-appropriate information. Be honest about difficulties and if you don’t know the answer, say so.
• Limit caring responsibilities. Some care activities may be fine but be careful you don’t ask too much. Praise your child when he has been particularly helpful or patient.
• Have special time with the sibling, try to programme it in. Look at the attention balance… what can you do to give your other child more attention?
• Listen to ideas. Siblings have a unique relationship with the disabled child and their suggestions should be carefully listened to.
• Listen to feelings. Listen to their fears, anger, anxieties. Don’t be upset if they say “ I hate him!” or “I wish he hadn’t been born!” Acknowledge difficulties and encourage them to open up.
• Approach each child individually, remind each child of his or her good qualities and contribution to the family but don’t expect siblings to be perfect “super-kids”. Try not to compare or pressurise children. Encourage independence in your disabled child as far as possible.
• Try to be fair, don’t always automatically take the side of your disabled child. Within reason, let them settle their own differences .
• Involve siblings. As they grow older, involve them if they wish in decisions about their disabled brother or sister. Talk openly about the situation. Discuss future plans, treatment, care needs. Ask them to meetings at school or with professionals. Encourage them to teach your child new skills. Get advice on how they can deal with difficult behaviour. Provide opportunities to advocate.
• Make time for normal family activities, have some outings, holidays and fun together, if possible. If your child’s disability precludes this, look for additional support and respite care (be persistent). Use this for special time with your other children.
• Make your home a welcoming place for friends and encourage your son or daughter to have an independent social life outside the family. Peer contact is very important.
• Talk about how they can cope with teasing/ bullying and/or embarrassment when people stare
• Get professional help if needed, from health visitors (good first port of call for preschoolers) teachers, social workers, counsellors or psychologists.
• Help set up a sibling support group where they can share feelings and concerns. Encourage siblings to participate in local and national groups that are for them. Tell them about Sibs Helpline (Tel: 01535 645 453)

Adult siblings may also need support.“ They should seek counselling if they feel held back in their own lives or are struggling to cope with a bereavement, “ says Monica McCaffrey, “ and they should sit down and talk about future care with parents.” Up-to date genetic information may also be needed.

On no-one’s agenda ?

“Their ability to contribute to the growth and happiness of their handicapped sibling is substantial. Their investment is large, and they have the right to assistance and support.”(Crocker)

As well as having needs of their own, siblings have a valuable input, they provide care, stimulation, entertainment and fill in gaps left by parents. But although awareness of siblings’ contributions has risen, resources and services are scarce. What exists is just a drop in the ocean.

Rosemary Tozer argues that awareness should be channelled into action from all services – health, social work, education, advice, therapy, voluntary agencies, which should engage with everyone in the family because everyone is affected. However the myriad of services means siblings are often “on no-one’s agenda.”

What is needed, says Tozer, is a partnership between parents and professionals, cooperation between agencies, information, and continuous discussion about how other children can be supported. Siblings often need advice on how to help a brother or sister or cope with difficult behaviour. Mainstream schools should extend disability awareness and knowledge of children’s extra responsibilities, and special schools should make sibs feel welcome and valued.

Janet Ratcliffe writes that siblings’ views should be included throughout assessment and consultation. They know their sibling well and should be part of evaluating a family’s package of support. They also need recognition in their own right.

 Contact a family suggests strategies whereby statutory and voluntary services can involve siblings. These include:

• Professionals giving siblings information and advice
• Listening to siblings’ point of view
• Offering someone outside the family to talk things over in confidence
• Providing flexible support

Clearly more family support and better respite services would have a positive effect. Parents are already overloaded and shouldn’t have to handle everything alone.

Siblings’ Groups

A fairly recent development in supporting siblings in the UK is groupwork. Often co-run by social workers or other professionals and parents these tend to adopt a similar format. There are two ongoing sibling support projects, in Liverpool and Merseyside but most groups are short-term. 

About eight children or young people within a narrow age range meet weekly over a period of about eight weeks. The group decides on its own activities (games, outings) and time is built in to talk. Siblings can discuss difficult feelings such as sadness, loneliness, or guilt that they are ok when their brother or sister isn’t, or even act out situations such as being teased or bullied.

The benefits include meeting others, sharing experiences and feelings and simply having fun. Children aged 9-12 said a group had helped them “ to realise I wasn’t the only one with a brother with special needs” and “ to cope when I get picked on about my sister.”

Another development is Sibs, a helpline and website run by Monica McCaffrey, who had two disabled brothers. Monica held information workshops, conferences and training for sibling group leaders before starting the helpline.

“I realised there were many adults like me who needed help with things like bereavement or future care issues,“ she says. ”Some people want a listening ear; some want advice and suggestions. We would love to hear from adult siblings, as well as parents and professionals.”

Monica hopes to maintain the website for several years and to extend provision: “ Our plan is to work with local authorities to promote development of sibling services, a combination of sibling groups for children and outreach work to individuals.

“Our dream is that in every local authority parents could ring a sibling service to get advice, speak about local issues, and if need be have someone make a home visit who could advise on things like behaviour or dealing with difficult feelings. The climate is right but it’s a 10-year plan.”

What Sense offers

Sense does limited direct work with siblings but we do have a whole family approach, whether offering support or putting on events. The Family Education and Advisory Services (FEAS) in Sense South East, Sense East and Sense West all work with families and siblings are very much part of the picture. They are included on assessment weekends when a member of Sense staff will also support the brothers and sisters if this is needed.

Jenny Fletcher, head of FEAS Sense West, says in the past when workers did home visits parents used to send away brothers and sisters or told them to be quiet. Now they are involved and this can have an additional benefit.

“Many children we work with are multisensory impaired with additional complex needs,” she says. “Their communication may be through behaviour rather than speaking or signing and they may use vocalisations, body language or facial expressions.

“Often disabled children are more interactive with their brother or sister than parents and we get a lot more out of communication when siblings are interacting with them. So, in supporting siblings, there are positive spin offs for the deafblind child also.”

There are Saturday clubs, holiday clubs, playschemes .Every Tuesday evening there’s a swimming group and siblings come too. “It’s an unspoken law that they stay down the deep end and no adults are allowed. They’re all in the same boat and happily moan to each other ‘God, my brother’s driving me mad’ without feeling guilty.”

At the Woodside Centre, Bristol, there are Saturday clubs for disabled children and their brothers and sisters. Siblings can do activities like canoeing or walking or sometimes the disabled child goes to the club and parents have one-to-one time with their other child.

Jenny Fletcher also describes a recent Inclusion day run jointly by Sense and RNIB: “There were lots of activities such as off road driving or recording music as well as workshops for siblings and a counsellor. She said the best sessions were with siblings – it was as if no one had ever asked them how they felt and they just couldn’t wait to tell her.”

Sense Family Network - which was set up a few years ago by parents to promote contact between families of deafblind people regularly holds Family Fun weekends away. The children, including siblings, spend time in a Leisure Club run by volunteers, giving carers a break. Tracey Good chair of the Family Network says, “You see some brilliant bonds happening between siblings on these weekends.”

Joff McGill, Sense Head of Voluntary Services, believes that “Information is the key thing for siblings. They need to know where they can find answers or simply shape some of the questions about what the future holds."

Siblings often hugely enjoy Family Fun weekends he says but adds, “Everyone is different. Many siblings want to come along to Sense events, volunteer in leisure clubs or lead holidays, but just as many choose not to get involved. Others are quite happy to dip in now and then.” 

Throughout all the variations, one thing is clear. Every person in a family is important, and siblings should not be sidelined. Whether or not they choose to participate in what is on offer is up to them. The Guidance and Regulations of The Children Act 1989 which refers to children with disabilities states “ the needs of brothers and sisters should not be overlooked and they should be provided for as part of a package of services for the child with a disability.” Awareness comes first; now is the time for action.

Life story 1

Ross Arnold, 9, has a sister, Zara-Jayne, 16, who has CHARGE.

“Ross was born into the situation: Zara-Jayne was already there. I think the other way round would be far more difficult. Zara has significant hearing and vision loss but much of the time manages well; she is mobile and doesn’t have challenging behaviour or major physical difficulties. So in some ways we’ve been lucky.

Ross is very sensitive and caring. Zara is night blind and he’s always first to take her hand when it’s dark. He often says,’Can you hear that Zara? Did you see that?’ Their relationship is more loving than many siblings “How come you’ve got the voice of an angel when you’ve had a cleft plate all these years?” he asked recently, but also pretty normal: one minute they’ll be cuddling, the next shouting at each other.

People often remark how kind Ross is and aware of other people’s needs. I’ve read things classmates have written and they say Ross is someone you can talk to and get advice from. He gets on well with both girls and boys at school.

Maybe he’d have been like that anyway but I think he’s learned a lot from this situation. Disability is very much a part of his life and he doesn’t flinch at it. Everybody to him is just a person and if he meets people who don’t talk properly or who walk strangely he just accepts them.

Ross knows everything about Zara-Jayne’s condition because we continually discuss what is going on. I think it’s important to talk and talk with your children so that they feel they have a voice. We all sit down to dinner every night and talk about things.

I worry that Ross doesn’t get the attention Zara-Jayne has had, but try to make sure we get at least some time together. I usually take him singing on Saturdays or we watch a video together and have a laugh.

I wonder if he feels his sister’s needs are put in front of his own. I think he’d say no because he understands why. Ross is nine, going on 90. There’s something very knowing about him."

Yvonne Arnold, Ross' mother.

Life story 2

Shazia Khan,25, is the sister of Imran, 29,who has Usher.

“Imran is the youngest in the family and because I’m nearest in age we’ve always been very close. I also have two older sisters. We came to England after Imran’s diagnosis of Usher. There were few facilities in Pakistan and my father was in the foreign service so it was easy to get a transfer. 

I had adapted to Imran’s deafness. I looked after him when he was a baby and felt very protective towards him. From a young age I knew he would be better off signing but couldn’t convey this to my dad who wanted him to speak normally and lipread. But things have come a long way since and my parents now accept signing as a form of communication.

I was 13 when I discovered Imran had a condition where his eyesight would deteriorate through overhearing a conversation between my mum and older sister. I remember sitting in a physics lesson the next day with a big lump in my throat thinking “If he can’t hear anything and can’t see anything he’s basically half dead”. I was very young, innocent, and emotionally really shaken. It was devastating news but I couldn’t tell friends because I felt they wouldn’t understand.

After the initial shock I accepted it. Imran was active and seemed all right up to about 15. Then, slowly, he started bumping into things, I used to have a go at him until I became more aware. We became extremely close and would talk for long hours. Although I was a teenager I took on a lot of responsibility and explained Imran’s condition to him, I knew the quicker he understood everything the better it would be. Sometimes I attended parents’ evenings instead of mum because my English is better.

Even now, I’ll often make Imran’s appointments. I have this guilty feeling that if I’m his sister and don’t help him, how can I expect others to? At times it does affect me, I’m only human! My dad’s at work, my two other sisters have married, while Imran and I are still at home. Sometimes I feel like he’s my son, that somewhere along the line I’ve taken on the role of second mum.

But when he has a success I feel as if it’s my success. Now Imran is becoming increasingly independent. He’s starting a course at the City Lit and his signing has improved a lot. I’m beginning to let go the responsibility.

Have I missed out? Perhaps. As a child I was always told to look after Imran – say when playing hide and seek. I was always watching out for him and sometimes had to sacrifice my own fun to make sure he was OK. But as I grow older I’ve come to live with it and it feels normal, part of my nature . I’m very good at solving other people’s problems and I’m a good listener. But I do sometimes ignore my own needs.

I discovered I had cousins also affected by Usher. As I grew up I became fascinated by biology and genetics which I found easy to grasp and I’m now doing a degree in BioMedical Sciences after which I hope to do research into Usher syndrome. My elder sister has a MSc in Genetics, so it’s affected us all.

I know families where siblings have been able to do their own thing without carrying too much responsibility. I haven’t done badly though. It’s made me stronger and a lot more caring.”

Life story 3

Tom Price, 10, is brother of Susan, 8, who has Sinca (chronic infantile neurological cutaneous articular syndrome).

“When Sue was born we had to leave Tom for a month with his grandparents because we thought we were losing her. He was two. Sue came home from hospital but failed to thrive: she couldn’t gain weight, cried a lot and we all had terrible broken nights. At three Sue had a shunt put in and was prescribed glasses; at four she got a hearing aid; she had arthritis and didn’t walk until she was nearly four. It was horrendous, one thing after another - vision, hearing, hydrocephalus, mobility, skin, blood problems. How could we have a child with so many problems? What was coming next? 

My husband was working long hours on the farm and Tom became my little helper – bringing nappies, or cloths to mop up when Susan was sick. I was exhausted and worn out with stress and worry. Sleep deprivation is like torture. This affected Tom too as I had no energy to do things he’d have liked, like swimming or going for long walks.

Things changed once Susan started school and recently her condition has improved. She has good speech though she’s profoundly deaf and she uses her vision quite well. The arthritis is better, and a special non-additive diet has helped.

Tom loves Sue and thinks the world of her but he’s a bit embarrassed by her too. Home is home, he doesn’t like having friends round. I think it’s made him quieter and more reserved.

We’ve had lots of help from Sense and the holidays have been fantastic, I’d sleep while the children had fun with volunteers. Tom gained in confidence and became more outgoing. Usually he didn’t like pushing Sue’s buggy in front of people but on one holiday he proudly pushed Sue in a wheelchair alongside another boy pushing his sibling. Tom was showing her off and it brought tears to my eyes.

Recently Sue started attending an after school club and this gives me a little time with Tom on his own which we both really appreciate. I’m battling for direct payment for respite care so one weekend a month I can take off with Tom and we can do some activities he enjoys and get a good night’s sleep.

Tom is well rounded and very much his own man. He is careful with Susan, respecting how fragile she is but standing up to her as well. He’s quite grown up for his age and is very tolerant of other children with special needs. “

Mary Price, Tom's Mother

In Tom’s words

“I keep myself occupied most of the time. I go off leaving mum alone so she can get on with things. But I have some time with mum on my own too.

I spend quite a lot of time with Susan, we play around, or I read her books at bedtime. I don’t mind her and she doesn’t mind me though she sometimes gets on my nerves. Then I’ll go and get mum or dad.”

Tom Price

Life story 4

Matt Turner, 36, has two disabled brothers – Ben, 38, and Luke, 29. Ben is deaf and partially sighted. Luke is deafblind and in a wheelchair. He also has scoliosis and quadriplegia. They both have learning disabilities.

“Like a lot of things you just accept it and the situation of having two disabled brothers seemed normal to me when I was at home. Ben was already 18 months when I was born, so he let me know who was in charge. Luke was several years younger so it was a different relationship. He was always the baby, regardless of his disabilities, and everyone looked after Luke.

Ben was also much more able. He communicates through signing and has more social skills, whereas with Luke communication is much more tactile and physical.

As a child the hardest thing is when you go out. At home you don’t think twice, but when you’re out and about aged 15, and you’re trying to be cool and you’ve got a handicapped brother or two, well, you get the feeling that you’re not quite fitting in.

As you become an adult there can be an element of guilt. It’s difficult when you begin to sense their lives will be very different, especially if you are moving forward in your life and they are not. But luckily my brothers are both now in a pleasant environment.

I am still involved, though it’s harder with Luke as he’s a long way away and it takes longer to bond again when we meet. With Ben we catch up quickly even if time’s passed. My children, who are 5, 3 and nine months, see my brothers too. Luke is fun - they quite covet his wheelchair and enjoy the lights and tactile things to play with. They don’t yet understand but simply take it as it is – that’s what Uncle Luke is like.

There were down moments, but we all have those. Sometimes we fought, but that’s natural. As adults their situation can be difficult from time to time. Overall, however, it’s been a positive experience for me. It’s made me much more relaxed about family relationships and able to let unimportant things go.

I think I’m a nicer person than I would have been otherwise, more understanding and well rounded."

Life story 5

Monica McCaffrey, founder of Sibline, has a brother with Downs Syndrome and a brother with cystic fibrosis who died in childhood. She also has two other brothers.

“My initial career choice was connected for I trained as a speech and language therapist when I left school. Later I worked with Contact a Family and ran workshops for children with special needs.

It’s affected my family size, I bottled out after having two healthy children. And it’s had a big effect on my parenting: I am very conscious of children’s feelings and the fact that even small things people say can have a huge impact. It’s also made me realise the importance of checking that children have understood as they don’t always ask questions and can make up things in their head.

I have a tendency to help people too much, which I try to keep in check. I am still coping with bereavement issues concerning my brother who died when I was small: this had a massive effect and I have needed counselling to come to terms with it. Regarding my other brother, I feel a commitment and responsibility to his welfare, particularly now my mother is older.

It’s mixed and complicated but I’ve also had lots of positive experiences. If I hadn’t grown up in a family with disability I wouldn’t be doing what I am now. It’s very much coloured my view of life.”

Further reading

'Brothers and sisters, a special part of exceptional families', Thomas Powell and Peggy Gallagher (Paul Brookes, 1996)

'Brothers, sisters and learning disability – a guide for parents', Rosemary Tozer ( BILD Publications, 1996)

'How to talk so kids will listen and listen so kids will talk', Adele Faber and Elaine Mazlish (ISBN 0-380-57000-9)

'Listening to siblings', Janet Ratcliffe (Handsel Trust, 2003)

'Genetics? What’s it got to do with me?' A resource pack for the brothers, sisters and parents of people with a genetic disorder (Available form the Genetic Interest Group, Tel: 020 7704 3141)

'Brothers and sisters of retarded children: an exploratory study. Grossman', FK ( 1972). Syracuse University Press

'Brothers and sisters – a special part of exceptional families'. Powell & Gallagher ( 1996). Paul H Brookes Publishing Co.

'A sister’s lament. Sibling information network' newsletter 1. Zatlow (1982) (5).

'Children who care – inside the world of young carers'. Aldridge & Becker (1993). Loughborough University.

'My brother’s keeper?: sustaining sibling support'. Tozer, R (1996). Blackwell Science Ltd; Health & social care in the community 4 (3)