A Special Child in the Family

Coping

 

Cover of A Special Child in the Family
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Getting a Break

Looking after any child is hard work so all parents welcome a rest from time to time. If your child requires more care or supervision than average, your need for an occasional break from caring will be even greater.

Some parents are reluctant to leave their special child at all. They fear he would be unhappy without them or that other people cannot give him such high quality care as they do. Be careful if you feel this way as it can lead to problems eventually. With no rest from constant caring, stress and physical tiredness can build up until you find you can no longer cope. Your marriage and your other children can also suffer from lack of attention.

Don't assume that leaving your child with someone else is automatically bad for him. It can widen his horizons and give him some independence from you. One day you may need someone else to take over if you are ill. Your child will cope much better then if he is already used to being away from you and knows his substitute carers.

Babysitters

Most parents use a babysitter occasionally to allow them to go out, leaving the children safe in their own surroundings. Relatives, teenage girls and baby sitting circles meet most parents needs. If your child needs extra care you may find it more difficult to find someone able to cope.

In some areas of the country, there is a home sitting scheme which supplies sitters for people caring for disabled or sick relatives. This may be provided through social services or a voluntary scheme. Ask around to see if there is one in your area - your health visitor or social worker may know or you can ask other parents or your local branch of the Carers National Association.

If your local college runs a nursery nursing course, one of their students may like to babysit for your child to gain experience. Try contacting the organiser of the course via the college.

Paying someone to babysit may be too expensive to allow you to go out much. Reciprocal babysitting arrangements keep the costs down. If you can't join an ordinary baby sitting circle, could you swap babysitting with another parent of a child with special needs.

Respite care

A babysitter cares for your child at home but respite care involves him being looked after elsewhere, either with another family or in a hospital or residential home. Respite care schemes exist in many parts of the country under various names and are organised either by social services or by a local voluntary group. Some, but not all, limit the amount of care you can use each year.

Parents vary in the amount of respite care they want. Some use it one day a week, perhaps to simplify shopping. Some use it irregularly while others prefer regular breaks such as one weekend a month. Many families use respite care to allow them a week or fortnight's holiday without their disabled child.

Although you may initially feel guilty at the idea of sending your child to strangers, don't forget that he will benefit as well. Your child will enjoy the attention and his horizons will be widened by seeing new people and places. He may also enjoy feeling independent from you, especially if he is of an age when he would be doing things on his own if circumstances were different. In any case, he will benefit from his parents being relaxed and refreshed when he returns home.

Respite care with another family

This type of respite care is different from normal fostering. You are not giving up any of your rights as a parent and you are not putting your child "into care". You are just sharing the workload.

The carers are people who realise how great the strain of caring for a disabled child can be and want to help by taking a child into their home for a while. Don't let their apparent ability to cope make you feel inadequate. Remember they only look after him for a short time so it is easy for them to give him more attention than you reasonably could. They start fresh, not exhausted, and can leave the housework until he goes home.

Perhaps you are thinking "They'll never find anyone who wants to take my child". Don't let this worry prevent you applying for respite care. Some carers are willing to take very difficult children and are not deterred by incontinence, fits, difficult behaviour or total helplessness. Some actually prefer the more difficult children as they enjoy the challenge and feel they are helping more.

Respite care in residential units

In some areas there is a hostel or residential unit exclusively used to provide a break for parents. In others, one or two respite care places may be reserved in a residential home. You usually have to book in advance unless it is an emergency. Because staff work duty rotas, your child may have less opportunity to build new relationships than he would in a family. Also he is less likely to be the centre of attention, which you may consider an advantage or a disadvantage.

Such schemes offer your child good substitute care and a change of environment. I have heard of many children who look forward to their visits. If your child has particular difficulties like running away or severe fits at night, you may feel more confident leaving him where there are staff on duty day and night and good locks on the door.

For older children, short term stays in a hostel or home can provide a useful introduction to living away from home. In fact, many residential units like to build up to long term admission by a series of visits and short stays unless an emergency forces an immediate move.

Respite care in hospital

Sometimes children are admitted to an ordinary children's ward to give their parents a break. Many parents view this as a poor substitute to other forms of respite care and use it only as a last resort. It is usually offered to severely disabled children who need a great deal of nursing care such as suction, tube feeding or regular turning through the night. The main concern of parents is that the physical care is excellent but there is insufficient stimulation.

Obviously it is distressing to put your child into a situation where you feel he will not receive the same high quality of care which you give him. However, it is better to let your child go into hospital for a few days than to struggle on with no break when you need one. If you collapse from exhaustion or the family disintegrates, the effects on your child will be much worse.

Who can use respite care?

Most schemes are only available for severely disabled children and some are limited to mentally disabled children. Receipt of Disability Living Allowance is often used as a guide to eligibility. Rules are, of course, there to be broken or bent and some schemes are more flexible than they seem at first glance.

If you feel you need respite care but your child is not eligible, apply anyway. The worst they can do is say "no". Explain why you feel you need the help and ask your health visitor, social worker or other professional to support your application. Even if respite care is not available, it is sometimes possible to use short term fostering in a similar way if your home situation is suffering.

Children's hospices

A special type of respite care is offered by children's hospices if your child has a life-threatening illness or progressive disorder such as cancer, Batten's Disease or muscular dystrophy. Your whole family can stay at the house so you have a break from housework and caring without being separated from your child. Hospices also offer ordinary respite care, if you prefer, plus long term support throughout your child's illness. (see chapter 23)

Holidays together

If you want to go on holiday together as a family, your child's special needs may complicate life. There are many different organisations offering holidays for the disabled but I am not listing them here for lack of space and because the information would rapidly become out of date.

The Holiday Care Service offers free advice on holidays for people with special needs. They can give you information on accommodation, transport, inclusive holidays and possible sources of financial help. Your voluntary organisation may have ideas too and some of the larger charities for disabled and sick children have suitable holiday accomodation available at reasonable rates.

Holidays apart

A holiday for your child without you can do more than just give you a break. It can give him independence and the confidence to know he can manage away from you. It can also allow him to mix with other children with similar problems which he may welcome if he feels isolated and different.

Once again the Holiday Care Service can give you information on this type of holiday. Ask your voluntary organisation too as they may organise holidays for unaccompanied children or know of someone who does. Schools sometimes organise holidays or residential field trips although you may need to push hard for your child to be included if he is at ordinary school. The Guide and Scout organisations run camps for their members and usually make a big effort to include all the children in their group even if they have special needs.