A Special Child in the Family

Coping

 

Cover of A Special Child in the Family
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Going into Hospital

It is now widely accepted that all children need their parents with them as much as possible when they are in hospital. As a result, children's wards usually allow unrestricted visiting by parents and most of them allow Mum or Dad to stay overnight, although the facilities available for resident parents vary widely from one hospital to another.

If your child is admitted to a specialist ward rather than a children's one you may need to ask for unrestricted visiting. If you are refused, ask again higher up the hospital hierarchy or contact Action for Sick Children for advice.

Visiting

The ideal of staying in hospital with your child all the time is easiest to achieve if he is only admitted for a few days for tests or a simple operation. If he has to stay in for a long course of treatment or will have repeated frequent admissions, the rest of the family may not be able to cope with Mum or Dad being away for large periods of time. Your other children may feel neglected or abandoned while you and your partner may miss the mutual support you can give each other.

There is no easy answer. When you are in hospital, you will feel guilty about the children left behind and when you are at home you will feel guilty you are not in hospital. You must work out the solution which feels best for you but accept that it won't be a perfect answer because there isn't one.

Your presence is particularly important if your child is in isolation. However well-intentioned the nurses are, there are unlikely to be enough staff available to allow someone to be with him all the time. The hours will drag without company to counteract the boredom and loneliness.

Even if you can't be with him all the time, give a high priority to staying with your child all the time for the first day or two while he settles into the routine and the staff become accustomed to his special needs. Also try to be there just before, during and after any unpleasant treatments as that is when his need for you will be greatest. If you are waiting for treatment to happen but need to leave your child for a while, ask the staff not to do anything until you get back. It's infuriating to sit by your child's bed for ages only to find he is given his injection while you have popped out to the loo.

If you are worried how you can manage to visit, talk to the ward sister or a medical social worker. They may have ideas you would never have thought of. It is occasionally possible for a small brother or sister to stay in hospital too or for social services to help by finding someone to look after your other children during the day.

Life can be easier if one or both of you can have time off work while your child is in hospital. Although this is not always possible, employers are often far more sympathetic and flexible than you might expect so it is worth asking. Even if time-off is out of the question, more flexible hours may be possible.

If the hospital is a long way from home, there may be no alternative to one parent being resident as travelling backwards and forwards each day would be impossible or too expensive. When faced with a very long admission (several weeks or even months) some parents stay at the hospital part of the week but spend the rest of the week at home. Other couples share the load, perhaps with Mum staying during the week while Dad goes at weekends. If you can't visit for a while, keep in touch by phone or letter. If your child is old enough, you can leave coins for the phone so he can call home whenever he wants. (He is unlikely to be able to use a mobile phone in hospital.)

If your child is in a local hospital, it's possible to visit every day but sleep at home. You can also share the visiting with other relatives - perhaps Nanny or Grandad can go sometimes to give you time with the rest of the family. Don't forget your child may also welcome visits from his brothers and sisters, school friends or teachers.

Communications

Don't assume the hospital will automatically know how to cope with your child's special needs. Even children with the same condition often require different care or handling. You may need to demonstrate the best methods of feeding, dressing or lifting.

You may have to explain things more than once. Just telling one of the nurses is often not enough as staff go on and off duty. A note on the locker or bed is a good way of reminding staff of any special information like his special sign for the toilet or the time you will be coming back to the ward. If he is unconscious in an intensive care unit, the staff may also welcome a photograph of him taken when he was well as it will help them relate to him better.

Don't assume the hospital will have all the special equipment your child needs. If he has a special chair or special eating utensils, take them with you. If you are in doubt, phone the ward first to check. I know of one girl with severe cerebral palsy who spent a whole week confined to bed because there was no suitable chair to enable her to sit in the playroom with the other children.

Ward rounds

A formal ward round where the consultant visits each bed accompanied by a retinue of nurses, medical students and other people can be daunting. If the consultant talks to the people with him all the time, you may feel awkward about saying anything. Don't be. Try to pretend the others don't exist and ask all the questions you need answered.

Very, very occasionally an unfeeling doctor may discuss your child's condition as if he wasn't there - perhaps referring to his future deterioration or impending death. If you feel the situation is intolerable, say so. Ask them to stop and continue their conversation elsewhere. You are not being unreasonable - they are. You and your child have a right to be treated with respect and understanding.

Making life better

Hospitals are hot places so wear cool comfortable clothes. Take something to do as hours can drag when your child wants you there for security but doesn't need you to play with him. Frequent interruptions and the dullness of mind that appears to accompany hospital visiting make the best choices of occupation those which require little concentration.

Try to say "hello" to the other parents on the ward. They are probably feeling just as lonely as you. You can give each other mutual support by chatting, going to coffee together or keeping an eye on each other's children while one of you has a break.

The arrival of the post breaks up the hospital day. Whereas a child having his tonsils out will be inundated with get-well cards, a child with regular admissions may receive none at all as being in hospital is no longer a novelty. If necessary, remind friends and relatives to send letters and cards as your child will feel left out if nothing arrives for him.

Going home

All the literature about children in hospital tells you to expect a reaction from your child when he comes home. He may be extra tired from missed sleep and show signs of insecurity. Common sense tells you that your other children may be extra demanding or clingy too if you have been away from them.

Less spoken of, but just as likely, is a strong reaction of your own. Finally getting your child home can release the tension of the previous days resulting in floods of tears or outbursts of anger. You may feel insecure at losing the support of the hospital staff if your child's condition needs continuing care. If you have been resident in the hospital, you are probably also very tired as few parents sleep well on the ward.

Life will revert to normal eventually. Realise you have all been through a tough time and allow yourselves time to recover.