A Special Child in the Family

Family matters

 

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Brothers and Sisters

Next to yourselves, the people who will be most affected by your child's special needs are his brothers and sisters or, as professional jargon calls them, his siblings. Those who refer to siblings also talk of a phenomenon called sibling rivalry. This is a fancy name for behaviour like kicking your brother under the table, complaining that your sister has a bigger bit of cake and loudly declaring "It was him" when it wasn't. Unless you were an only child, you can probably remember many similar examples from your own childhood.

Let's be realistic. There is no law that says brothers and sisters must like each other. Some never do. Some are devoted to each other. Mostly there is a love/hate relationship between the different children in a family so one minute they are fiercely loyal to each other and the next they are bickering and squabbling so much that you could cheerfully knock their heads together. If that is the case on an ordinary family, how can we hope for anything better if we add a child with special needs. In fact, the situation can easily become worse because of the extra care and attention that child requires.

Fairness is important

Children demand fair treatment from their parents. They want to know they are as important to Mum and Dad as their brothers and sisters are. If one child appears to receive the lion's share of the attention, the others look for ways to even the balance. Unfortunately, one of the quickest ways to make parents take notice is to be naughty. From a child's viewpoint, a smack on the behind may be better than being totally ignored.

Please don't jump to the conclusion that all your other children's naughty or strange behaviour is because they have a special brother or sister. They might just be going through an awkward phase or fighting for independence. However, it is important to consider whether they are feeling jealous or left out.

Try to look at the situation through their eyes. Does Dad always come home and kiss your special child first? Do you make more fuss when your disabled child holds a spoon for three seconds than when his sister gets a gold star for her handwriting? Did you fail to watch your son come last at sports day because his sister had to attend hospital for a routine check? It is so easy for even very good parents to get things out of balance without realising it.

Jealousy is a natural emotion and bringing such feelings into the open can help make them easier to handle. If you admit that you felt jealous when you were young (I bet you did!), your other children may be able to talk more easily about being jealous of their brother or sister. Once you know the problem is there and they realise you understand, the situation is likely to improve. Don't make your other children feel guilty for being jealous or expect them to feel grateful for being normal and healthy.

Children need time

All your children need your time, not just the one who is disabled or sick. Try to organise yourself to spend a little time regularly with each child. That may sound daunting but you can often have good chats while you are ironing, washing up or travelling. Younger children can enjoy your company while helping you with the chores and bedtime can also be a good opportunity for extra attention.

Special occasions matter so you should attach a high importance to attending school open days, Brownie enrolments and similar events. Your other children have their lives affected by their brother or sister's extra needs so there is no reason why the situation can't be reversed sometimes. These events are important so, if necessary, you should leave your special child behind even if he creates at being left with a babysitter.

If it's available, respite care can provide you with the time to give your other children extra attention as well as the opportunity to go on outings and activities which would otherwise be impossible. It may be worth using respite care for their sakes even though you personally could manage without it.

Sharing

A favourite phrase of the professionals is "A disabled child means a disabled family". I think that is too black a statement but it is true that your special child's problems are, in a way, the whole family's problems. They affect all of you to some extent so it is only fair that everyone should understand them.

Explain his problems to your other children as fully as you can. In particular, if you need to expect different standards of behaviour from them than you do for their brother or sister, make sure they understand the reasons for it. Obviously young children will need a very simple explanation but don't forget to upgrade it as they grow older. Remember that, just like you, they will not understand everything the first time so be prepared to repeat your explanations and be open to questions.

If your children are older than your special child, it's important to explain what is wrong from the earliest days for they will see your grief and be frightened by it. They can easily feel pushed out of the family circle if they don't understand what is happening. If the new baby has to stay in hospital, try to involve them in any way you can. Let them visit the ward if possible. Perhaps they could draw pictures to hang by the cot or you could take photos of the baby for them to have at home.

Similarly, if your child needs frequent hospital admissions, it's important to consider the needs of his brothers and sisters when you decide how much you stay with him. Otherwise they can dread the thought of hospital as a place which spirits away Mum or Dad as well as their brother or sister. Sharing visiting between Mum and Dad, spending school hours in hospital and evenings at home and letting brothers and sisters visit with you are all ways of easing the situation.

Family problems need to be tackled by the whole family. Look for ways to involve your other children in the care of their brother or sister but beware of making helping a burden. Perhaps they would enjoy learning sign language or doing physio, even if rather incompetently. Tell them the small signs of progress to look for so they can delight in being the first to see them and help them understand why sometimes your special child should be allowed to struggle unaided in order to learn.

Embarrassment

If your special child's problems are easily noticeable, you are already aware of the difficulties you have when visiting strange places and meeting new people. I expect you are still sensitive to the reactions of strangers however much you have tried to grow a thicker skin.

In the same way, your other children may feel awkward and embarrassed when new friends realise their brother or sister is different. Help them to work out a simple explanation to give to friends, preferably one which includes what your special child can do and how other children can help. For example, "Tony can't hear but he can understand what you are saying if you look directly at him and talk slowly and clearly."

Life will be easier for your other children if their brother or sister is known and accepted in the community. One father took the brave step of talking at the school assembly when he found his children were being teased for having a severely disabled brother. He spoke of his son's problems and how it must feel for him. Few people would have the courage to do that (I know I wouldn't) but the principle of meeting ignorance with information works.

Most children like to be the same as everyone else in their age group. This is especially important when they are in their teens so your teenage children are particularly likely to be acutely embarrassed by their brother or sister's strange appearance or behaviour. Although you can help in the ways I have already mentioned, you must accept their feelings. Try not to be hurt if they don't bring friends home and never force them to take your special child with them if they don't want to. That will only breed resentment.

Planning for the future

If your special child's difficulties are so great that he will never be fully independent, the question arises of what will happen to him when you are too old to cope anymore. It is unfair to assume that your other children will take on the caring role. They have their own lives to lead. Make sure they realise you do not expect them to take over from you in years to come.

If problems arise

Despite all your efforts, your other children may develop behaviour problems which you don't know how to handle. If this happens, the earlier you ask for help the better. There is no shame in using child guidance, family therapy or whatever it is being called at the moment. You will probably feel awkward or embarrassed at the idea of one of your children seeing a psychiatrist, psychologist or psychotherapist but the service is there so why not use it? No one is suggesting your child is mad - just that he needs help to cope with his situation. It can be a great help to have someone you and your children can talk to who is outside the family and therefore not emotionally involved. Once you start to feel the benefits of some help, you will feel more relaxed about receiving it.