A Special Child in the Family


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When you can't cope any more

First of all, let me make one thing clear. This chapter is not written from a "holier than thou" position. I am not some superior being who can cope with all the difficulties life throws my way while looking immaculate and producing piles of beautiful iced cakes for the school fair. Quite the reverse - I have hit rock bottom so often I know it well. The ideas in this chapter are not just theories - they have been learnt the hard way to the accompaniment of a good many tears.

Your child's special needs produce extra work and stress for you. As a result, more work, more stress or less sleep can bring you to breaking point more easily than if your life was less demanding initially. Everyone has physical and emotional limits - there is no shame in admitting you have reached them. Your low patch may be only temporary. Perhaps you know you will feel better once your period has started, the children have gone back to school or your cold has cleared up. Sometimes, though, there is no relief in sight. From your position of abject misery, the future looks unbearable.

Once you have admitted to yourself that you have reached the end of your tether, try telling your partner (if you have one). You may need to repeat yourself several times before the message sinks in as he or she may be reluctant to face the truth. You could also talk to a close friend or one of the professionals - anyone who is a good listener and likely to be supportive. Talking about your situation can help you sort out your ideas so you can decide what to do next. Remember the situation is unlikely to improve permanently if everything is left as it is.

Visit your doctor

It's worth telling your GP how low you feel. She can check there is no medical reason for you not coping. Anaemia, period problems, chronically blocked sinuses and many other relatively minor problems can wear you down and contribute to your tiredness. Ask her about any worries you have about your health so she can either treat them or reassure you that all is well.

You may be reluctant to visit your doctor in case she prescribes tranquillisers, sleeping pills or anti-depressants. Please don't let that stop you. Doctors are far less willing to give those types of medicine than they were in the past. If yours does suggest drugs, ask what they will do, how long you will need them, what side effects they have and whether they are addictive. Only agree to take them if you are happy with the answers. Don't feel guilty if you need to take anti-depressants for a while - sometimes they can help lift the gloom enough for you to sort out a long term solution.

Making breathing space

What you need now is a breathing space. Take off as much pressure as you can. Even if none of the ideas in the previous chapter are feasible right now, try to arrange things at home to be as relaxed as possible. Forget about the cakes for the school fair - give them a packet of biscuits instead. Plan easy meals and postpone non-urgent appointments until you feel better. Put yourself first for once. Your needs matter and should not always be ignored.

Use this time to think about why you have reached this stage and how you can stop yourself getting there again. Share this process with your partner as it is important the solutions are agreeable to both of you. Remember the situations likely to have caused your crisis are too much work, too much stress, too little sleep or a combination of all three. All these cause tiredness which reduces your ability to cope, making everything an effort and easily transforming molehills into mountains. That is why the breathing space is so important - it relieves your tiredness so you can think more clearly.

You will know if you are physically tired but you may not realise straight away that you are emotionally tired. I know I didn't. Signs to watch for are feeling panic at the slightest thing or feeling that if something else went wrong you either wouldn't cope or wouldn't care. You may also cry more easily or be more inclined to shout at the children.

What's gone wrong

There are many reasons why your workload may have increased. Perhaps your child's condition has deteriorated so he needs feeding or is incontinent. Perhaps he has grown so big that lifting him is now exhausting. The changes may have happened so slowly that you haven't realised until now how much extra work they are causing.

Perhaps your child's condition has stayed the same but you are now receiving less help. The parents or in-laws you once relied on for help may now be too old or sick to help or may even have died, adding grief to the other emotions you feel. A previously very supportive friend may have moved away or your husband's job may have changed so he works longer hours or goes on business trips. These and similar situations can leave you coping alone far more than you did before or mean you have fewer breaks from caring.

Maybe the extra work is nothing to do with your special child. Caring for a new baby or a frail, elderly relative takes time and energy. Although commitments outside your home can provide a welcome break from routine they can, if you are not careful, build up to more than you can handle.

Nearly all the situations that increase your workload will also increase the stress you are under. In fact, most changes in life are stressful, even the pleasant ones like moving to a better house. Think carefully about all the changes that have happened to you in the last year. Remember that a number of seemingly minor events can combine to cause almost as much stress as one major catastrophe.

There are many other reasons why you might be under stress. At various times I have been worn down by worrying about when I should take the boys to the doctor, about their problems at school, about leaking roofs and broken washing machines and about my own health. Money, or rather the lack of it, can cause worries too. Perhaps one of you has been made redundant so you face a big drop in income. Perhaps you face extra expenditure for hospital fares, large repair bills or increased mortgage payments.

Working out a plan

Once you have thought out all the reasons why you have become so low, the next step is to decide what action to take. You won't be able to remove all the problems but it may be possible to reduce some of them and to improve your ability to cope with those that are left.

When you are considering what action to take, think of as many possibilities as you can - not just the obvious ones. As well as trying to lessen the workload, look for ways to make more opportunities to relax or make better use of those that you already have. Remember it is often more relaxing to do something else which takes your mind off your worries than it is to do nothing at all. The rest of this book should help you come up with some ideas. You may also find it helpful to talk to your health visitor, social worker or someone else who knows what help is available locally. Your local Citizens' Advice Bureau may be able to offer advice on money problems.

To give you an idea of what I mean, let's look at the list I produced on one occasion when I became really low. The items beyond my control were the boys having cystic fibrosis and the deaths of Steve's parents which left me with less support and help. The other problems were:

•  Steve was working overtime and making frequent business trips, often quite long and at short notice.

•  The children were older and staying up later so we had less time to ourselves in the evenings.

•  I had no interests to take me out of the house during the day or take my mind off our problems.

•  We lived a long way from the hospital which made visiting difficult.

•  Matthew was very unhappy at school

Our first idea was for Steve to change his job so we could move nearer the hospital. Although that would have solved some of the problems, it would have created others as we would have had no friends to support us in the new area. In the end, we stayed where we were but Steve stopped going away and working overtime. His employers were very understanding when the situation was explained to them.

We also took positive action about Matthew's school problems instead of just worrying about them. We arranged for a regular babysitter so we could go out once a week. I started writing regularly and helping at our local toy library, both of which helped relieve my boredom and frustration. I found the family supported me in this now they understood how much I needed other interests.

Writing that down makes it sound trivially simple whereas it really took several months of thinking, looking at alternatives, making false starts and getting upset. Don't expect any overnight improvements but you will probably feel better once you know you are trying to find a solution.

Coping with stress

Many complimentary therapies offer ways to combat stress. Some are cheap and easy to use - I've found Bach Flower Remedies very useful and a few drops of the right aromatherapy oil in your bath water can be very relaxing. Others such as reflexology or acupuncture involve visiting a qualified therapist and can be expensive. Ask around to find a practitioner other people have used successfully, and don't commit yourself to a long course of treatment until you are sure it will help you.

Talking to a skilled psychologist or counsellor can also help reduce stress, and so can learning meditation or relaxation techniques. Personality is extremely important here so have a trial session before you commit yourself to regular sessions. You may need to try several counsellors before you find one with whom you feel comfortable.

Making hard decisions

The right solution for you may not necessarily be the easiest one for everyone else. An interest outside the home may provide a necessary break for you but the children may resent having a little less attention. Only you can weigh up the merits of the different alternatives but don't forget to put your own needs fairly high on the list of priorities. Like me, you may find other members of the family feel better about any inconvenience to them if they understand how important the change is for you.

It's easy to take on more work than you can handle but it's harder to admit you need to stop doing something. It can hurt both you and the people you are letting down and can leave you feeling guilty, especially if you feel you should have been able to manage. Don't be too hard on yourself if you find you need to give up some of the demands on your time. There is a limit to the amount anyone can do and there is no shame in admitting you have passed it.

You will probably feel particularly guilty if you find you can no longer cope with your child's care. Perhaps you are exhausted from lifting him or from turning him every two hours through the night. Perhaps his behaviour is so difficult that you are trapped at home, unable to even go to the shops. There is no shame in admitting you can't manage - you are not an inadequate parent, just one facing demands which are too great. Don't let fear that your child may have to leave home prevent you admitting you need help. That is only one possible solution. Respite care or better equipment may make enough difference for you to be able to cope again. If your child is very dependent on you and likely to remain so, you probably will have to consider alternative care for him as you grow older. There is nothing wrong with admitting it now and starting to plan towards it.

If you are faced with really difficult decisions, it can help to talk about them with someone who understands what you are facing: another parent, a friend or one of the professionals you deal with. You will feel less guilty about your eventual decision if someone you trust agrees it is the right one.