A Special Child in the Family

Coping

 

Cover of A Special Child in the Family
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Facing the Outside World

When a new baby is born, there are socially accepted responses for friends and relatives to make. They ask how much it weighs, what sex it is and all the other conventional questions. When a child is born with problems or develops them later, social custom offers no guidelines so no one is quite sure what to do or say.

Some people will cope with the situation and show by their words or actions that they care about you and your child. Others will try to find the right words but fail, not because they care any less but because they are less able to judge your needs. Their words may not only fail to comfort you but can make you feel even worse. Comments like "Look on the bright side - things could be worse" are well intentioned but may feel more hurtful than helpful. If possible, try not to condemn people forever because of their early inability to understand how you feel; they were probably doing their best.

Some of your friends may need time to accept your new situation before they feel able to talk to you. Most will eventually overcome their nervousness but some may never be able to adapt to what has happened. There is nothing you can do to prevent this so let them go and try not to be too hurt by their behaviour. In time, new friends will take their place.

If your child's problems are not visible, other people may not fully understand the impact the diagnosis has had on you. This can result in them to making hurtful comments completely unintentionally. They are not being deliberately unpleasant and may not even realise they have upset you. If a friend or relative is particularly thoughtless in this way, it may be best to avoid him or her for a while until you are feeling less vulnerable.

Talking to people

At first, people outside your immediate circle may feel awkward when they meet you. The local grapevine will have told them something is wrong but, if it is anything like our local one, their knowledge will be vague, patchy or inaccurate and they won't know what to say. You will probably feel equally awkward as you will not know how much information they have already heard. The simple query "How's the baby?" used to throw me in confusion when Matthew was very young as I never knew if the questioner was asking out of social convention or was genuinely concerned because she knew he had cystic fibrosis.

If you would rather not discuss your child's condition with all and sundry, keep the conversation on safer topics. However, if you are happy talking about your child's problems, you can bring up the subject yourself. Use the words you feel comfortable with and prefer: eg Down's Syndrome rather than mongol, cerebral palsy rather than spastic. Most people will follow your lead. Some parents find it best to mention their children's problems early in a new friendship as the longer they delay, the greater the other people's embarrassment when they do find out.

If people start talking about your child as if he is not there, bring him into the conversation yourself. In particular, if your child is very severely disabled, some thoughtless people may make comments in front of him like "Children like that should be allowed to die". It's important, for your child's sake, that you not only disagree but also point out that he may well understand everything he hears.

Too much help

Some people are so anxious to help that they try to give assistance when you don't want it. This is particularly likely when your child is struggling to do something by himself. Strangers may be so upset by his slow progress that they step in and do it themselves. This can be annoying and frustrating so try to stop trouble coming. If you see someone about to help unnecessarily, stop them and explain why it is better for your child to manage on his own.

Although I know it can be difficult at times, please try to be as pleasant as you can for, if you are rude, that person may hesitate to help someone else who really needs it. Remember too that you are providing a model for your child to follow as he gets older. At the moment, it's right for him to struggle on his own but he may find eventually that he has to accept occasional help if he is going to cope on his own.

Rude comments

It always amazes me how much some total strangers will interfere. Comments like "He needs a good hiding" or "You should take him to a doctor with a cough like that" are not at all uncommon. One way to react is to ignore the speaker, especially if you are never likely to see them again. Alternatively you can say "It's none of your business" or some other rude retort but, although this can be effective, it can also leave you tense and bad-tempered.

A third option is to provide a brief explanation which stops the comments without you losing your temper. This is particularly worthwhile with strangers who you are likely to meet again (local shop assistants, for example) as it stops the situation recurring. You don't need to relate your child's entire medical history. Just use a simple explanation which you feel comfortable giving- perhaps that your child is deaf, can't see well or finds it hard to learn.

Staring

Staring is a common problem for parents whose children are noticeably disabled. In fact, it bothers anyone who looks different, whether they are disabled or not - mothers of identical twins complain about it too. Not everyone who stares at your child is thinking unpleasant things about him or extreme pity for you. Many are just interested or curious. There is no way to stop it completely so try to grow a thicker skin.

If the situation is too bad to tolerate, try staring back - it works sometimes. Another method is to talk to the people who are staring, explaining your child's condition. Once their curiosity is satisfied, they will probably lose interest.

Don't hide at home

Don't let the responses of local people stop you taking your child out and about. Staring and rude comments are a reaction to seeing something different - your child. The more they see him, the sooner he will cease to be unusual. As everyone becomes accustomed to him, the stares and the comments will become less common. If you go out regularly, both you and your child will become an accepted part of the local community and benefit from seeing different people and places.