Thanks to babysitters and school, there are times when you can return to a semblance of normal life; when you can go out without people staring and temporarily forget drugs, physio and other problems. For your child there is no such relief. For him, the problems are always there twenty four hours a day, seven days a week. They cloud his future, affecting his choice of hobbies, friends and career. You can't protect him from all the hurts life may hold nor fight all his battles for him but you can help by giving him a firm emotional base from which to face the future.
When one of my boys was three, he told me with great confidence, "I have to take medicine with my food. Daddy did too when he was a little boy and when I grow up I won't need it anymore just like Daddy doesn't." No one had ever told him that - it certainly wasn't true. It was just his way of making sense of reality as he saw it. When your child is very small, he too may assume his problems are only temporary ones which he will eventually outgrow unless you teach him otherwise.
Try to talk to your child about his condition from his earliest days (or from soon after the diagnosis) so he grows up with the knowledge he needs. Explain what is wrong in words suitable to his level of understanding and gradually expand on that basic explanation once he has understood it and wants to know more. Be prepared to repeat your explanation many times as your child is unlikely to understand and remember all the facts straightaway. There are some excellent children's books available about how the body works which can help you explain what is wrong. Also your voluntary society may produce a booklet aimed at affected children.
It's important never to lie even though the truth may hurt. If you do, your child will find out eventually and will lose his trust in what you tell him in the future. However, there is no need to kill all hope completely. Many illnesses and handicapping conditions are variable in their long term effects. There is nothing wrong in admitting you don't know what the future holds.
You may feel you want to spare him too much pain by holding back some facts about his condition until he is older, especially if his condition is progressive or terminal. Although it's sensible not to pour out all the bad news when your child is not ready to hear it, it's also wrong to hold back facts when he asks for them. Remember you are not his only source of information, especially as he gets older. Other children at school may repeat things they have heard from their parents while television, radio and the press often carry items on disabled or sick children and their problems. Your child may be more upset by learning painful facts through these sources than he would have been if you had told them to him gently and sympathetically.
The press, TV and radio can be particularly hurtful because, in their search for the dramatic, they frequently use words like incurable and fatal. If your child is frightened by such an item, try looking together at the way the media exaggerates other stories so he can get things in perspective. If your child has AIDS, you will need to be particularly sensitive to the publicity he is likely to see.
As your child comes to realise the full impact of the problems he faces, he has every right to be upset and angry. Remembering your own reactions to the diagnosis can give you some idea of how he feels but don't fall into the trap of saying "I know how you feel" because you don't (unless you suffer from the same disability). Having a sick or disabled child is different from being sick or disabled yourself.
It feels horrible if your child chooses to take out his anger on you but it is actually healthy. It shows he trusts you sufficiently to feel able to show you his true feelings. However, this doesn't mean you can't show him less painful and destructive ways of expressing his anger than kicking you on the shins. Digging, hammering, throwing cushions and making lots of noise can all be useful.
Your child may welcome a chance to talk about his feelings to someone outside the family, especially as he grows older and wants to be more independent. He may feel more able to talk to someone not emotionally involved as he doesn't have to worry about upsetting them. Asking someone else to help doesn't mean you have failed your child - it's just acknowledging a perfectly natural state of affairs. A more distant relative, a friend or a professional such as a doctor, teacher or social worker may take this role or you could try a child psychiatrist, psychologist or psychotherapist.
Your child may also benefit from talking to other children or adults who face similar problems. They can offer practical advice on how to cope as well as easing any feelings of isolation he may have. It is worth making an effort to arrange such contacts if they don't happen naturally through attendance at a special school. There are some holidays organised for groups of children with similar conditions which allow just such contact - ask your voluntary society and the Holiday Care Service for ideas.
Some children don't express their anger and unhappiness outwardly. Instead they turn in upon themselves, becoming withdrawn and depressed. Although this may be easier to live with (at least at first) than a child who is kicking the walls and you, it can be less healthy.
If your child finds it difficult to express his feelings because he is withdrawn and reluctant to talk about them or because he is very young or has poor communication skills, he may benefit from contact with someone trained to work with children using psychotherapy or play therapy. She can help him express his emotions and worries using play materials instead of words. Such therapy takes time but it can be very beneficial and can show which aspects of your child's problems are causing the greatest distress.
Children are very conforming beings - they love to be the same as everyone else, and the odd one out is vulnerable to teasing from the less pleasant members of the group. Your child will be very sensitive to all the aspects of his condition which make him different from other children. You can't make him like all the others but you can do your best to minimise the differences.
Some children's desire to hide their disabilities can lead them to reject the help they need. They would rather forgo any potential benefits than be seen to be different. I have heard of children who refused to wear thick glasses or hearing aids or who wouldn't take necessary drugs when out with friends. One disabled mother recalled how, as a teenager, she discarded her walking stick in favour of a rolled umbrella and prayed it wouldn't rain.
If your child reacts this way, understand his feelings and go along with them as far as possible. Would the family budget stretch to a really fashionable pair of glasses or contact lenses (if they are suitable)? Could your doctor change the drugs to ones that are only taken once or twice a day so your child no longer needs to take them at school? Perhaps you can think of some other compromises which would make it easier for your child to accept the help he needs.
You can minimise your child's obvious differences and make it easier for him to be accepted by other children if you ensure he is dressed the same way as everyone else. Remember that doesn't mean the same as you were dressed at the same age. One teenager I met laughed loudly when I asked how the students with learning difficulties at our local college fitted in with the others. "You can spot them a mile off," he said. "They are the only ones who look clean and smart. The boys wear ties and the girls dresses and tights while all the other students wear jeans and tatty trainers."
If your child isn't able to choose his own clothes as he grows older, enlist the help of other young people of similar ages. Mail order catalogues can also show you modern fashions. Don't assume your teenage daughter won't take pleasure in her appearance or enjoy wearing make-up just because she is disabled or sick.
I am sure there are some things your special child can't do well (or perhaps at all). He may not be able to master some skills which come easily to ordinary children unless he has extra help and encouragement.
However, too much emphasis on his lack of abilities will be as depressing for him as it would be for me to have someone constantly talking about my inability to sing in tune. I am sure you too have things you can't do well but I doubt if you would put them down first (if at all) in a list of facts about you. Like me, you would concentrate on the things you can do and encouraging your child to take the same approach will help build his self-confidence.
When my eldest son was about to change from primary to middle school, his self-confidence was at a low ebb. The only things which singled him out from his classmates were his constant cough and his small size, both results of his cystic fibrosis and neither likely to earn him respect from the other children. Then, one day he came home from school and proudly announced the teacher had told him he was the best one at standing on his head. We followed up this first glimmer of ability by encouraging him to join a gym club where he caught the enthusiasm of the other boys and the coaches. By the time he went to his new school he was not "that short kid" or "the boy who coughs" but "the boy who can walk on his hands". This rather strange ability gave his self-confidence an enormous boost he never lost even though gym was eventually replaced by other interests.
Try to help your child find something within his capabilities that he can do well. It will increase his self-confidence and improve his standing in the eyes of other children. If he has poor mobility, how about drawing, model making, music or computing? Even if he has quite severe learning difficulties, he may enjoy cooking, gardening or pet keeping. Many special children find it hard to excel in sports like football which require speed, good coordination and agility but there are other sports available which are less demanding and/or more individual. For example, you don't need to be able to walk to take part in archery and children with poor mobility on land may gain great pleasure from swimming. Horse riding can be enjoyed even by severely disabled children (especially if you have a local group of the Riding for the Disabled Association) and learning to control such a large animal is a great confidence booster. The ideas are endless - start with your child's current interests and abilities and work from there.
Because your child already has so much to cope with, it can be tempting to spoil him -to fail to demand good behaviour and to indulge him with everything he wants. Neither is a good idea. Interestingly enough, the people who asked me most strongly to pass this message onto to parents were disabled young people themselves. One girl with cerebral palsy described some of the other children at her school as being very spoilt. As she explained, "Getting everything they asked for didn't make them better people as they could not see past themselves." Your child will find more than the normal amount of difficulties when he comes to make his way in the world. Spoiling him now will not make it easier for him to deal with them. On the contrary, it will prevent him learning how to cope with disappointment and frustration. Life is hard enough anyway but for a spoilt child it will seem even harder.
Expect an appropriate standard of behaviour for your child's level of development and don't assume all his bad behaviour is due to his problems. Even though he is special, he is still first and foremost a child and, like any ordinary child, he can be naughty sometimes just to see what you will do. Also you are just a mother, not a saint, so don't feel you have failed if there are times when he gets on your nerves and you lose your temper.
There are probably as many theories on disciplining children as there are parents. The two main rules are be consistent and only punish deliberate naughtiness, not clumsiness or lack of experience. The child who spills the orange squash because he is clumsy or didn't understand how to screw on the lid doesn't need disciplining. The child who deliberately pours it on the floor to annoy you does.
Everyone is happier if they have friends, and your child is no exception. You can help him meet local children before he starts school by taking him to a local mother and toddler group or playgroup. With some encouragement from you, friendships started then may last into school age, even if your child has to attend a special school.
Asking other children to play at your home is also a good idea. I have heard of some parents who invested in a big item like a paddling pool, climbing frame or slide to attract neighbouring children to their home thus giving their child some companionship. If your child has learning difficulties, a few games which rely completely on luck rather than skill may enable him to play with other children without automatically losing. For older children, Cubs, Brownies, Scouts and Guides can be a good source of local friendships as can your local PHAB club, if there is one.
Look around your friends and you will probably find most of them are very similar to you in lifestyle and interests. In the desire to integrate your child into ordinary life, don't overlook the possibility that he might enjoy meeting other people with similar problems. Being the only one in a group who is different can sometimes be lonely. You could consider a holiday with similar children or you may have contact with other children like yours through your voluntary society or your child's special school.
It's natural for a child to gradually gain independence from his parents, to make his own choices and live with their consequences. This process starts in babyhood and continues throughout childhood but it accelerates in adolescence. Just because your child has problems, doesn't mean he won't want independence but it may make it harder for him to achieve it. Your immobile child may long for privacy as much as his able counterpart who can rush out of the kitchen and shut himself in his bedroom.
For some children, total independence may be an impossible dream but that is no reason why they shouldn't exercise as much control over their lives as possible. Try to give your child as much freedom and responsibility as appropriate for his age and development. Even if he is very disabled, he may be able to choose which drink to have and which clothes to wear. Try to gradually increase his freedom of choice as he grows older.
Most parents find adolescence a difficult stage to cope with in their offspring so you should not be surprised if you do too. It is at this stage that your child may feel the full impact of the problems he will face in adult life so anger and frustration at this may be added to normal teenage moodiness.
The natural desire for independence may show itself in a refusal to accept treatment, especially if it is given by you. Tact and understanding are necessary to cope with this. Try, if you can, to avoid becoming completely at loggerheads with each other in a "Yes, you will", "No, I won't" argument. Acknowledge that his feelings and opinions are important and look for ways around the problem. Could he learn to carry out treatments himself or could they be done at a more convenient time or in a more private place? It can also help if you involve your child fully in discussions and decisions about his health so he fully understands the need for his treatment and feels part of the team. Remember that, unless your child's problems prevent it, there will come a time when he will take full responsibility for his own life. Then it will be entirely up to him whether he accepts the treatment he needs or not. Allowing your child to gradually become more involved in his medical care during adolescence is part of the growing up process.