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When a child has a disability it affects everyone in the family including the brothers
and sisters. How brothers and sisters react to having a sibling (a brother or sister) with
a disability can depend on the kind of disability, their age, the age of the child with
the disability and how it is managed in the family. Most importantly it will depend on
how parents manage and the support they get from their parents. Brothers and sisters
can have some of the same feelings of loss that parents have. It is important that their
feelings are heard and understood. Brothers and sisters can also have a lot of joy from
their relationships with their sibling with a disability, and learn a lot that will help
them develop into caring, non-judgemental young people.
DIFFERENCES FOR BROTHERS AND SISTERS
Some of the differences for brothers and sisters of children with a disability are:
- family life may need to be arranged differently to allow for the treatment and training
needs of the child with a disability
- family outings and activities (where the family can go as a family) can be affected
- other children in the family may miss out on time and attention from parents, and feel
jealous of this. Sometimes brothers and sisters fight between themselves because they know
they cannot fight with the child with the disability
- children may feel guilty if they complain because they are expected to be sympathetic,
or if they do not want their sibling to be with them when they are with their friends
- children may be afraid of what the disability means to them. They may not understand
that they cannot catch it
- when their friends come around they may be embarrassed by their sibling's behaviour
- sometimes brothers and sisters may be asked to act as carers to help parents out
- they may be worried and upset by parents' reactions to the problem, especially if
parents are grieving or fighting (which can happen under stress)
- they may feel a pressure to succeed to make up for the parents' disappointment.
WHAT SIBLINGS SAY
This section has some of the issues that have been raised by brothers and sisters, with
some suggestions for what you might do to help them.
"People ask what it is like to have a sibling with autism"
The brother or sister can answer something simple but truthful. Some examples could be
the following.
- "Normal - I have never known anything different".
- "It can be a pain sometimes, but so can my other brothers and sisters".
- "She is my sister, not just someone with a disability".
"I am afraid that when my parents die, he will be my responsibility"
While you hope that brothers and sisters will always care for each other, you need to
make provision as far as you can, for your child with the disability so there is not an
unfair burden for the siblings.
Talk through this issue with your other children so you can hear their fears and talk
about what can be done to plan ahead.
"I hate asking my friends over to play because he always joins in and spoils the
game"
Let the siblings know that they do not always have to include the child with the
disability, just as they will not always want to include each other. This is especially
important in the teenage years.
Set up a place for the child with the disability with some special activities eg a video
or TV, for when the other children have friends over.
Some active children with a disability can be happily occupied on a swing so the other
children can play together.
"I always feel I have to explain to my friends that it is not genetic, it is
not part of me and it is not catching"
Some conditions are genetic (run in the family) and some are not.
Give children very clear information about the condition.
Even genetic conditions do not affect everyone in a family and will not necessarily
affect the children of the brothers and sisters.
Get genetic counselling for the brothers and sisters if necessary, as they grow older.
"I can never have my party anywhere I want to because she has severe asthma and
these places would make her ill"
Children and young people should be able to have their special occasions with their
friends.
Some families have two birthday parties - one for the family where everyone can go and
one just for friends.
"My mum and dad could never watch my sport because they had to care for my sister
and she would misbehave.
Try taking turns to watch the other children's sport.
If it is a special match that both parents want to watch you could try taking the car
and watching the match from the car.
"My sister always gets the biggest part of mum's time and she gets away with
everything because she's got problems"
It is important to try to make time for all the children, even if it sometimes means
getting respite care or help with caring for the child with the disability.
All children will test limits and it is not helpful for any child to have unfair
allowances made as children with a disability will fit in best and be more accepted if
they are able to conform with the behaviour that is expected of children. On the other
hand the other children need to know that you can only expect what each is capable of and
that will differ between children.
"My friends sometimes call people 'a spastic' when they want to put them down. My
brother is 'spastic'.
Children may need help to cope with situations like this, where the friends may not be
meaning to tease.
They could reply by saying what spastic (or whatever word is used) means, and that it
isn't fair to tease people who can't hold their own.
If friends actually make fun of the child with a disability the sibling might say
something like "He does have some problems, but he is really good at." Or
"Everyone has some problems. He is my brother and I feel sad when you tease
him".
Bullying is not OK and should not be tolerated. Sometimes a brother or sister can help,
eg one sister used to say "My sister was born like that, what's your excuse?!" -
which made the teaser stop and think.
"I am not a person in my own right, I am just Sam's sister"
While parents need to give a lot of time to the child with the disability, and naturally
want that child to feel special, it is important that all children in the family feel
special.
Make regular special time with each of your other children.
When you talk with friends make sure to talk about the achievements of all your
children.
If the care of one child is very demanding, try to get some respite care so you can
spend time with your other children.
Make sure that each of your children has your support in following their own special
interests.
"I have to care for my brother a lot when my mum is working because he has cystic
fibrosis and is in a wheelchair, and I can't play with my friends"
Brothers and sisters of a child with a disability sometimes have to carry extra
responsibility, especially in single parent households.
This responsibility can help them to be more independent and have more skills than other
children of their age.
On the other hand all children need time to be children so it is important to make sure
they get this, even if you have to get someone else to care for some of the time.
Some children do not say when they feel overburdened or may feel guilty if they
complain, so it is a good idea to check how they are feeling from time to time.
"I often feel disappointed, because when my parents plan something for me,
something goes wrong for my sister and we all have to go to the hospital."
If planning is a problem in your family because of the health needs of one of your
children, try to work out an "in-case" plan.in case we can't go to the
pageant, in case something goes wrong when it is your party
These plans could include the support of a special aunt of other relative so the
celebration does not have to be missed, or perhaps an alternative time for a special
outing - work it out with your children if they are old enough.
"I am always expected to be the responsible one, to give in when there is an
argument "
It is not good for any children to always get their own way and children and young
people with disabilities also need to learn to consider others as well as they can.
Teaching you child who has a disability that she cannot always have her own way, and to
behave in ways that fit in with the rest of the family will make everyone's life easier.
WHAT YOU CAN DO
Every child in your family is important and needs to feel special and valued. Parents of
children with a disability are often very busy - ask for help if you need it so you have
some time for all your children.
Brothers and sisters can all have fun together and enjoy each other with support.
Help the siblings work out how to explain the disability to their friends.
It is important to give your other children permission to ask questions openly and to
give them answers so they understand what is happening. Explain how the disability was
caused, because children may worry about it happening to them, or feel they caused the
problem in some way.
Listen to children's feelings. Try and find some special time for each child in the
family.
All children need time to be children. Helping to care for a brother or sister can be
good for children but they also need plenty of time to play and be with their own friends.
Allow siblings to be involved eg help choose the clothes for their brother or sister.
Encourage brothers and sisters to be proud of their sibling's achievements and to
realise the difficulties she may have had in getting there. Let them know that you are
proud of their achievements as well.
Make sure that the child with the disability does not destroy or damage the other
children's work or belongings. Give them a safe place to keep them if this is an issue.
Remember that the other children need to be able to live their own lives and that plans
for the future of the child with a disability should be made so that the other children do
not feel there is a burden placed on them.
What one sister of a young adult with a disability said:
"I love my sister dearly and I would not wish things to be any other way. If she was
"normal" then she would no longer be the sister that I love and know."
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