A Special Child in the Family

Early Days

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First Shock

One of the most devastating events any parent can experience is to be told there is something seriously wrong with their child. If it has happened to you, don't be upset by the strength of your reactions because they are completely justifiable. Suddenly the hopes and dreams you had for your child have gone to be replaced by an uncertain future full of problems. Nothing will ever be the same again. It is natural for you to go through an emotional turmoil in the days and weeks following your child's diagnosis as you adjust to this new reality.

Sometimes your feelings may be so intense that you fear you cannot cope with them. You may even worry you are going mad. Don't despair. Other people have trodden this path before, feeling just as bad. They survived and so will you. To help you see how normal you are, let's consider some of the most common reactions parents feel.

I don't want him

Three weeks after our younger son was born, we were told he had cystic fibrosis. Travelling home with him, I suddenly felt an almost instinctive urge to leave him on the bus, to go home without him and lead a life free of the complications he had brought with him. Fortunately that feeling lasted only a moment. I pushed it away as soon as it came for I already loved my baby too much to abandon him. However, that brief moment has left me with great sympathy for any mother who finds it hard to accept her disabled baby.

Perhaps you feel you don't want this new child. After all, you've just spent nine months awaiting the arrival of a perfect baby. This one isn't perfect so he doesn't feel like yours.

I expect you are frightened too: frightened of all the problems which lie ahead, frightened of how other people will react. Perhaps you are even frightened of the baby himself especially if you haven't seen him yet and you know he will look different. On top of everything else, you are probably frightened by your own reactions, by your own fear.

The best cure for all these feelings is your baby. Look at him and, if possible, hold him. This may not be easy if he has been rushed to a special care unit, perhaps even one in a different hospital. However, babies in incubators can usually be touched even if they can't be cuddled. If you are very frightened of seeing your child or can't do so because of distance or your own health, ask someone to take photographs for you. Otherwise the pictures produced by your imagination will be far worse than reality.

Your feelings of rejection may vanish when you see your baby, or it make take weeks or months of caring for him before they go. Be patient with yourself. Many mothers of ordinary babies find it takes time for their love to grow. You may need time to adjust before you can see your child as a baby who happens to have a problem rather than a problem who happens to be a baby.

It is particularly tempting to reject a baby who is going to die. It seems less painful to abandon him now than to let your love grow only to suffer the heartache of losing him later. Caring for a dying child is a great emotional strain but remember that so is living with the knowledge that you turned your back on a child who needed you.

It may be, in the end, that you still feel unable to cope with this baby. If so, please take an active interest in his future. All children have a right to be loved however disabled or sick they may be and however short their lives. Adoptive and foster homes are now found for even very severely disabled or dying children.

Please don't deny your child the opportunity of being part of a happy family just because it would make you feel uncomfortable to see someone else cope with a situation you couldn't handle yourself. Remember their circumstances are different from yours so it might be easier for them to cope. If you can bring yourselves to do so, meet his new carers. Hopefully you will then feel more relaxed about his future and, in time, he may know that you gave him up in love rather than running from him in fear.

I wish he were dead

The future can look bleak and scary when you've just been told your child has serious problems. Your hopes and dreams have been destroyed so you can only see difficulties ahead. Perhaps you are thinking "If only he'd die now. Then we could grieve for him, get over it and go on as we were before." It's easy to think like that, especially if your child is very frail or is likely to die young anyway. You feel trapped by this disaster and the death of your child seems a way of escape.

Entertaining such thoughts, even momentarily, can leave you riddled with guilt that you don't love your baby. That is being very hard on yourself. Many parents feel like that at first but such feelings usually pass as you get to know your baby and grow to love him. The future is rarely so black as you imagine it in those early days.

This situation is more complicated if you are asked to make life-or-death decisions for your new baby, such as granting consent for life-saving surgery that will leave him disabled afterwards. It's hardly surprising that making such a momentous decision is difficult when you are still suffering from the shock of diagnosis and are probably finding it difficult to even decide what to have for breakfast. But please try to think of what is best for your baby, not what is convenient for you. No child should die just because his parents don't want him. Don't be afraid to ask for more information or a second opinion if time allows.

Very, very occasionally a parent's feeling that their child would be better off dead stays and grows until they seriously consider helping him on his way. If this happens to you, DON'T DO IT! Instead talk to someone about how you feel, someone you feel safe confiding in. Try a trusted friend, your doctor, health visitor or another parent. If you would feel more comfortable talking to a stranger, phone your local NSPCC inspector or one of the helplines for parents under stress (see Appendix A).

It's such a relief to know

Many problems are not noticeable at birth but only develop or become noticeable as your child grows older. If this is your situation, you may have been the first to suspect something was wrong. Perhaps you noticed differences between your child and his brothers and sisters or between him and your friends' children. Alternatively you may have spotted the first signs of an undiagnosed progressive disease.

You may have been lucky and had those early worries explained quickly. It's more likely though that your initial concerns were followed by a long period of uncertainty. Perhaps your GP or health visitor took no notice of your worries, believing you to be an over-anxious mother. Even if everyone agreed something was wrong, it may have taken months before a proper diagnosis was made.

If this has happened to you, one of your first reactions to the diagnosis may be relief. You are no longer a fussy mother who worries about nothing. No one can suggest any longer (however subtly) that it is your fault your child is not growing or learning properly. Now you have a label to help you explain why your child's behaviour is strange or his speech poor.

You may feel guilty that such bad news should produce a reaction even remotely like pleasure. Don't condemn yourself. Why shouldn't you feel relief when you have been released from uncertainty. It's only now you know what you are facing that you can you start working out how to cope with it.

I'm so depressed I can't stop crying

This is probably the most common reaction of all - I have a file full of letters to prove it. This is not a depressive illness coming for no reason but a perfectly normal reaction to a devastating event. Your plans and expectations for the future are shattered so you need to grieve for them before you can pick up the pieces of your new life.

Don't feel a freak for crying. You have every right to cry - it's good for you. Crying releases the tensions and the pain, and helps you work through your grief.

Friends and relatives who are upset at seeing you so unhappy may urge you to ask your doctor for sedatives or anti-depressants. Try to manage without them if you can, except as a short term measure if you hit a really bad patch. Sometimes just talking to your doctor can help without her needing to prescribe anything.

Alcohol is an obvious alternative to prescribed drugs. Remember that drowning your sorrows in a bottle of Scotch provides only temporary relief. Tomorrow you will still have all your problems plus a hangover and if you continue to drink heavily, you will just add to your family's difficulties.

Eventually your depression will lift and you will stop crying. In the meantime, share your feelings with your partner rather than turning inward on yourself. You could also try talking to a friend who is a good listener or to another parent whose child has problems. Don't worry if you cry while you are talking. There is no shame in crying.

Looking for something positive in your situation can help you feel less depressed. I know it's difficult but try to concentrate on what your child can do rather than what he can't. If the future looks scary, try concentrating on today rather than tomorrow. Practise the art of not looking too far ahead.

Learning exercises and other ways of helping your child can make you feel more in control of what happens. But you may also feel depressed by the thought of all the extra work or frightened of the responsibility of carrying out treatments. All three reactions are equally normal and you may well find you have all of them in turns according to how good or bad you are feeling.

I'm so angry

Anger is another way to release the tensions that build up inside you. Both you and your partner may find you lose your temper more easily. Little things which wouldn't have bothered you before may now drive you to distraction. You explode at unsuspecting shop assistants and repair men. You kick the washing machine when it breaks down and may well find you are swearing more than usual. Sadly, you may also shout at each other and your other children.

Some of your anger may be directed closer to its source. Perhaps you are angry with the doctors for not spotting the problem sooner or with God for letting such a bad thing happen.

Anger is a difficult emotion to handle. It sows the seeds of hate. It can eat away at you and make you bitter or lead you to say hurtful things you later regret. An outburst of anger can damage a good friendship so badly that it takes a long time to heal.

Try to work off your anger without hurting anyone. Dig the garden, scrub the floor, punch a cushion, kick a football or just go off by yourself and scream or have a good cry. Laughter can be a great help. It diffuses anger, relaxing its grip on you. Time spent watching comedies on TV or reading funny books can be time well spent.

If your anger is directed against someone like a doctor or an unsympathetic relative, try writing them a letter. Put into it all your rage and hurt. Make it as abusive as you want. Then tear it up and throw it away. That may sound like a strange idea but it's surprisingly effective. If there is a specific cause for your anger, you will deal with it better when you have calmed down.

Finally, if you really do lose your temper with someone, don't forget that it's possible to say "I'm sorry".

It must have been my fault

It's very common to feel guilty that somehow you caused your child's problems. Perhaps the condition is inherited from both of you so you start thinking "I should have married someone else". Perhaps no one knows why your child is like he is but you worry it's because you took some medicine while you were pregnant or you kept on smoking.

The worse situation is when you know for certain things could be different. If you had closed the gate or seen the car coming, the accident might never have happened. If you had called the doctor earlier, the complications might never have developed.

The world is full of "what ifs" and "might have beens". Sadly no amount of worry or regret will change what has already happened. You need to put the past behind you and concentrate on today. I know that is much easier to say than to do but you can at least make a start. Try not to sit punishing yourself, thinking how good things could have been. If you start to do it, make a conscious effort to stop. Company can help here as can any activity which occupies your mind.

If your child's problems could have been avoided or minimised by your actions or someone else's, you may want to do something to prevent other children suffering in the same way. As well as helping others, this may also ease your feelings of guilt. However, don't be surprised if you can't cope with doing anything about it until you are more accustomed to your new reality. Perhaps someone a little more removed from the situation could start things moving for you. For example, they could put in an official complaint to the Health Authority or launch a campaign for a pedestrian crossing.

I feel such a failure. I'm jealous of other people's babies

Most people produce ordinary, healthy babies so it's not surprising if you feel a failure for having a child who is not quite perfect. This effect is more pronounced if this is your first baby than if you have other healthy children already. It can leave you with a great desire for another child even if the doctors advise against it.

It's hard to see someone else enjoying what you don't have, to see someone else succeed where you have failed. It can rekindle old hurts, rubbing salt into wounds you thought had healed. It was several years after Matthew was born before I could feel real joy at the birth of a friend's baby without any twinges of jealousy. Such feelings are natural and very common but they do grow less as time goes on.

You may find visits to the ordinary baby clinic particularly difficult. Seeing other babies growing and developing can be a painful reminder that your child is different. The comments and reactions of the other mothers can also be difficult to handle when you are feeling so vulnerable. Talk to your health visitor to see if she could help make things easier. Perhaps she could visit you at home or she could help explain your baby's difficulties to the other mothers. It may not even be necessary for you to visit the clinic regularly if your doctor is already monitoring your child's progress.

Will I always feel this bad?

The straight answer to that is "No". Life will look better as time goes by. Even if the situation doesn't improve, you will adjust to it.

Gradually you will feel better emotionally but don't be surprised if the progress is not very smooth. Helping your child's progress with physiotherapy can fill you with hope only to have the old despair return later because of an unthinking comment from a stranger.

The bad times don't last forever but neither do they vanish overnight. Most parents I have contacted felt it was between eighteen months and two and a half years before they had fully come to terms with the situation and life had settled into its new normality.

Once you feel more settled, don't despair if the old emotions come flooding back occasionally, perhaps triggered by a change in your situation. Explaining your child's problems to the teachers in his new school can have this effect as can seeing new signs of deterioration if your child has a progressive disease. This is a normal reaction so don't feel you are cracking under the strain.

Having a child with special needs is not something you get over but you do get used to it. You will never again be the person you were before but that is not necessarily a bad thing. Just as a useless lump of clay is turned into a useful cup by moulding and fire, so trouble can change us into better, stronger people if we let it.