A Special Child in the Family

Coping

 

Cover of A Special Child in the Family
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Alternatives to Care at Home

A long time ago, many disabled children were placed in institutions where they lived a life very different to that experienced in an ordinary family. Their parents were expected to behave as if nothing had gone wrong while those who chose to keep their children at home received little support. The situation today is very different as parents are encouraged to care for their sick or disabled children themselves. However, not all of them manage to cope indefinitely.

If you find you can no longer care for your child, you are not alone. Life is very unfair and some people find, as you have, that they are faced with too many problems at once. Just like you, they still love their children. Sometimes it takes more courage and love to admit that someone else can do better than you than it does to struggle on while failing to cope properly.

There are many reasons why your child may need to live away from home either temporarily or permanently. Perhaps lack of local facilities means boarding school is the only way he can achieve his full potential. Maybe problems with your own health have left you physically unable to cope with his care. You may be one of the many families who manage all right while their child is small but find life increasingly difficult as the years go by. Lifting a heavy teenager is far harder than moving a toddler. Difficult behaviour from a child of two is much easier to handle than the same behaviour when your child is fourteen and you yourselves are twelve years older.

If you find you can no longer give your child all the care and special help he needs, you may eventually need to love him enough to let him go or, at least, to share him. This is a very painful decision to make but you are not being cruel and unloving to consider it - just realistic. Finding out the options available does not commit you to parting from him - it gives you the information you need to make the right decisions for his future.

To find out about alternatives to living at home, ask your social worker or another professional you trust. Even if they don't have all the information you need, they should know where to get it. Your voluntary society may also have useful ideas. If you hear of a school or home which sounds suitable, you can contact it yourself for further information - you don't have to channel your enquiry through a professional.

You may find it hard to persuade the authorities your child needs to live away from home, especially as this arrangement can be very expensive for them. It can help to have the support of your doctor, health visitor or social worker or, in the case of boarding school, of an education expert.

Shared care

Sharing the care of your child with other people may be the most acceptable alternative for you. This means your child spends part of his life with you and the rest in a residential unit or boarding school where the staff have the time, energy and experience to help him gain new skills and independence. The long, regular breaks from caring allow you and the rest of your family time to rest and gather strength so you can cope again when your child comes home.

Residential care

At one time, residential care meant a large impersonal ward in a Victorian institution which concentrated on the physical care of its residents with little thought being given to their emotional needs. Thankfully it is now recognised that such places are far from ideal so nearly all of them have closed down.

Residential care for children is now provided in much smaller homes. Whereas the large institutions were usually in isolated areas, these small homes are often in ordinary residential areas where the children can be part of the local community. Many are in ordinary houses, indistinguishable from others in the road.

The various homes differ widely in size and organisation. Some are run to a fixed daily routine with meals arriving from a kitchen the children rarely visit. Others aim for a more homely atmosphere with flexible routines and staff eating with the children. It's now common practice in most homes for each child to have one member of staff as his key worker. She acts as a substitute parent and keeps in contact with the school, buys clothes and generally shows a special interest in her particular child.

Visit any homes which may be suitable for your child before you make any decisions about his future - two places which sound similar on paper may differ widely in atmosphere. Exactly which aspects of the home are most important to you will vary according to your child's special needs. If he is hyperactive your main concern may be whether the garden is adequately fenced whereas, if he is extremely physically dependent but mentally alert, you may need reassurance that his mind will be kept occupied. However, always try to see the whole building and meet as many of the staff and children as possible. Ask as many questions as you wish - this decision will affect your child's whole future so it's important you have all the information you need.

Most specialised residential homes are full so you may have to put your child's name on a waiting list. In the meantime, you will have to continue at home as best you can or accept a less than suitable placement temporarily. Sometimes a social worker or doctor can speed placement if the situation at home has become extremely difficult.

Family placements

In the past it was considered impossible to place children with special needs in foster or adoptive homes but more recent work has shown that even very severely disabled or dying children can be placed with families. As a result, you may be offered a foster home for your child if you cannot care for him yourself for a while. Also long-term fostering or adoption may be suggested if your child is unlikely to return to live with you, even if he is already in residential care.

If your child only needs a temporary placement while you are in hospital or having a baby, you may be happier knowing he is staying with another family rather than in a residential home. However, if you have found you cannot cope with him, you may be unwilling to let another family try. Perhaps you feel it is unfair to burden another family with the disruptions yours has endured. More possibly though, you are frightened that someone else will cope where you didn't. If your child is in a residential home, you can say to yourself that he is impossible to care for in a normal family. If he is successfully fostered, you will have to face the fact that someone else has succeeded where you failed.

Don't be too hard on yourself if this happens. Remember that the foster parents have chosen to take your child knowing the problems they will face. They are free from the emotional reactions you have endured and, most important of all, they do not have the other problems you face. Their life situation is different from yours. If they were placed in exactly your position they might not cope either.

Another fear you may have about fostering is that the foster parents will replace you in your child's affections. Certainly he is likely to call them "Mum" and "Dad", especially if he is quite young when he goes there and he is staying permanently. He will grow to love the people who care for him each day but love is not an exclusive thing. When we start to love a new person, we don't have to stop loving the one before. If he is permanently living with someone else, his relationship with you will change but that does not mean it will die.

Helping your child to move

If your child's move away from home is a planned one rather than the sudden result of a family crisis, there is much you can do to lessen his fears about it. Talk to him about the changes ahead, emphasising that he is not being sent away because he is naughty. If possible take him to see his new home at least once, preferably more, before he moves. If you can obtain photos of the new place and the people there, these will provide something concrete to talk about when you discuss the future together.

Only tell the truth about what is happening. Don't promise he will come home if you know he won't. On the other hand, if he is coming back, at least for visits, reassure him by leaving things ready for his return. Give realistic promises about your visits, letters and phone calls and keep them.

Perhaps your child is so severely disabled that you think he has no understanding. Talk about the future anyway. He may understand more than you expect and if he doesn't you will only have wasted a little breath.

Sharing his past

At home you are your child's link with his past. You know how much he weighed when he was born and all the other facts which add up to make him who he is. His new carers will not be able to tell him such things unless you provide the information.

If he is only going away briefly, perhaps while you have an operation or until the end of term at his residential school, it is enough to provide him with photos of the family and some background information about life at home. Please label the photographs clearly if your child's memory is poor or he cannot speak well. Then his carers can help keep his memories alive by talking to him about familiar things.

If he is leaving home permanently, it is good for him to have much more information. Making a scrapbook or album together about his life with you is a positive way of helping him which may also lessen the guilt you will probably feel in those last few weeks.

Into the book put all the information you can about your child: details of his birth, early life, special events, etc. Include photos and other souvenirs which seem appropriate. If you cannot bear to part with any of these, consider having copies made. Documents can be photocopied and new prints can be made from photographs even if you don't have the negatives. Try to include any information he may need when he is older, especially family medical details. It can be embarrassing for an adult to have to explain why he is ignorant of his family background.

If you can't face making the book yourself or his move happens too rapidly to allow you to do it, sort out the information and material anyway. Then pass it on, suitably labelled, to his new carers for them to deal with. Showing this care for his future well being is a positive way to demonstrate that you still love him even though circumstances force him to live away from you.

Visits

Unless you are making a complete break with your child, you will visit him in his new home. These visits are important to maintain your relationship with him, especially if you plan to have him home again eventually. If he is fostered, your visits are technically called "access" or “contact”. The frequency of your visits is usually decided before your child moves. Even if the foster family or residential home encourage you to visit at any time, they would probably welcome some warning of your arrival just as you would if someone were visiting you. In fact, the best guide to how to behave on such occasions is to mentally put yourself in the place of the people you are visiting.

It's hard to see your child cared for by someone else who doesn't do everything the same way as you did. But try to be more willing to compliment than criticise. If you are worried about some aspect of his care, ask about it in as friendly a way as possible. It often helps to praise some other point before you broach the more difficult subject.

You are certain to feel awkward the first few times you visit but don't let that put you off going. As you adjust to the new people and the new situation, you will feel more relaxed. Your child may react at first with wild excitement, floods of tears or even by ignoring you completely. He too will gradually adjust to the fact that you now visit and go away again.

When you visit, it can be tempting to take your child out and pretend that everything is as it was. Of course outings will be fun for him but don't forget to take an interest in his new life as well. If he is able to, let him be your host and show you round.

The relationship between natural parents and foster parents is a difficult one but it's important to try hard to get on with each other for this can make a great difference to your child's happiness. If his foster placement is successful, he will grow to love his substitute parents as well as loving you and he will be unhappy if the important adults in his life do not like each other. As long as you all consider each other's feelings everything should go well. Try to show an interest in the other children in the foster family who can easily feel left out during access visits - your efforts will be appreciated by the foster parents.

After he has gone

Not everyone will understand your motives in letting your child go. Even if some people have been urging you for years to put him in a home, there will be others swift to criticise if you actually do so. Try to grow a thicker skin so you can ignore their comments. What right have they to find fault with you? What makes them so sure they would cope any better if they were in your situation?

If you have other children, they may be very upset by the absence of their brother or sister even if they were always grumbling about him or her. They may feel guilty that they caused your child to be sent away or worry that they too may have to leave eventually.

It's important they know in advance that your special child is leaving and have a chance to say goodbye. Let them know and, if possible, see where he is going. Explain that it is no one's fault that he must go but just the consequence of him having special needs which your family can no longer satisfy. Although you can point out that they don't have those needs so will not need to go away, don't be surprised if your other children need extra attention and cuddles to reassure them of their security.

Adoption

If your child lives with foster parents, they take over the daily care of your child but you keep your legal rights as his parent. It is sometimes possible for the local authority to take over your parental rights. If they try to do so against your wishes consult a solicitor straightaway, preferably one experienced in child care law.

Long term fostering offers no security to your child or his foster parents. It's possible to formalise their relationship through a court procedure which grants the foster parents some rights (like choosing schools and consenting to operations) while your child still remains legally part of your family. This could be a good idea if you are happy for your child to remain permanently with his foster parents and they wish to make a commitment to him without adopting him. It gives them more control over his life while acknowledging his family ties.

Adoption is a bigger step as it breaks all your child's legal ties with your family. He takes the name of his new parents and is legally as much their child as if he had been born to them. At one time, adoption also meant no further contact with your family but that is not always so today. Some adoptive parents do keep in contact with their child's first family - the amount of contact varies from occasional letters and photographs to regular visits. This type of open adoption is more likely to happen if your child was initially fostered by the adopters so you already know each other, or if your child is old enough for a complete break not to be in his best interests.

It is hard to give up your child to someone else's care. Allowing him to be adopted can be even harder as it forces you to accept he will never return. However, it may be that the greatest gift you can give him is the freedom to become a complete member of his new family - the death of your dreams may provide him with the absolute security he needs. Remember adoption is only a legal ceremony. No court can ever change the past. Your child will always have the characteristics he inherited from you. It will always be you who gave him life.