Good communication lies at the heart of a good relationship between you and the school. If the staff don't understand your child's special needs, they will not be able to meet them properly. If you don't understand what the school are aiming to achieve, you will be unable to support those aims at home.
Most schools rely on notes and word of mouth to carry information back and forth between home and school. Many children are dreadful at delivering letters and the situation is even more difficult if your child cannot speak. One solution used by some schools is to always send letters home on the same day each week so parents know when to search the school bag. Some special schools use another technique involving a book where parents and teachers can write notes on what has happened at school and home. The book goes back and forth with the child each day and is particularly valuable for non-speaking children. You could suggest either of these ideas to your school if you find communications a problem.
Before your child starts a new school, talk to the staff about his special needs. This is particularly important if the school have never had a child like yours before. Make an appointment to see the relevant teachers rather than trying to talk at an ordinary parents' evening when everyone will feel rushed.
You need to be very specific about any special care your child needs. Try not to alarm and frighten the teachers who may already be feeling apprehensive about this new pupil, especially if they have not previously taught a child who has his particular difficulties. Teachers can feel very inadequate when faced with a potentially vulnerable child and ignorance can cause them to be overprotective. Comments like "I don't like to push him as I know he's ill" and "I didn't realise I could take her out of her wheelchair" are infuriating to hear later on and can be avoided by giving clear information at the beginning. Your voluntary society may have leaflets that can help.
Give clear guidance about how your child is limited by his problems and areas where as much should be expected of him as everyone else. Make it clear whether any drugs he takes cause drowsiness so the teachers can tell whether poor attention is due to drugs rather than an ordinary late night or a boring lesson. (In my experience, they tend to assume it is the drugs unless you have told them otherwise.) Make sure the school know of any warning signs of impending trouble they should watch for and the action they should take. Don't assume the school doctor will have given the school any necessary medical information - many parents find this doesn't happen.
If your child is to have an ancillary helper in the classroom, you will need to give more detailed advice on lifting, changing, physio exercises, etc. Remember that she, like the teachers, may be apprehensive so make sure you point out what she and your child can safely do as well as what to avoid. A conversation consisting entirely of "Be careful not to force his legs apart" and "If you do that you can really hurt" will not only be so discouraging she wishes she had never taken the job but also encourage her to be overprotective.
Your child's time at school will be happier if the staff understand how he feels about his difficulties. Explain if he is very sensitive about any issue like constant coughing or being incontinent. It can help minimise teasing and awkward questions if the teacher explains your child's situation to the rest of the class. Whether this should be done before he starts or later with his cooperation will depend on your individual situation and your child's character.
Incontinence causes much embarrassment among disabled children. It's a very personal problem and even young children will appreciate privacy and be reluctant for other children to know. Think back to your childhood and I am sure you will remember school toilets being very unprivate places. Even if there were locks on the doors (which there often weren't) there was often some little horror who crawled under the door or peeked over the top. Times may have changed but children haven't, so your child is likely to be reluctant to deal with pads and bags in the ordinary toilets. Some schools allow the staff toilets to be used in these circumstances. These often have the added advantage of more space. If your child has pads changed by his helper, this may be done in the medical room (if there is one). Again privacy will be appreciated, so arrange for a lock on the door if none is provided.
Contact the school again a week or so after your child has started. The staff have probably thought of other questions they need answering and you will feel happier if you know everything is all right.
Hopefully all will go well with your child's school career but you may be unlucky and find he is unhappy or his work is deteriorating. The big danger is to assume all the problems he has at school are due to his special needs. They might be but equally well they might not. Many ordinary children have problems at school and your child is as likely as any other to find he dislikes a teacher, is bored or over-faced by the work or is being picked on and teased by another child or a teacher. It is important to take your child's problems seriously and deal with them promptly. The more entrenched the problems become, the harder they are to solve.
Obviously the first stage is to ask your child what is wrong but don't be surprised if he doesn't tell you. He may even declare everything is fine when you can see it isn't. Many children are reluctant to admit they are being bullied or that they can't do the work.
The next step is to contact the school and arrange to talk to his class teacher, head of year, SENCO or headteacher, whoever seems most appropriate. When you make the appointment, warn them why you are coming so they can look into the situation before you arrive. Often your letter or phone call will be the first sign the school have that all is not well.
Hopefully, after they are aware a problem exists, the staff will take action to sort it out. The behaviour of teachers or other children may change or your child's day be rearranged so he has less contact with the people who upset him. More help may be given in difficult subjects and extra praise may restore shattered confidence. Your child may feel better anyway once he feels people are taking his problems seriously.
If talking to the school doesn't help, try contacting the education welfare officer or educational psychologist. They may talk to the school on your behalf or offer other suggestions. Some schools take difficulties with school work more seriously if an educational psychologist is involved and explains why the problems are there.
You could also contact the school governors. Their role has grown in importance in recent years as new legislation has given them increased powers and responsibilities. In particular, they have a specific responsibility to ensure that all pupils with special educational needs receive the help they require, whether they have a statement or not. The governors may be able to back you in a disagreement with the school or support the school in its efforts to obtain the resources it needs from the education authority. They are also the right people to contact if you are unhappy because your child is being excluded from all or part of the National Curriculum.
If the situation doesn't improve, you may need to consider the more drastic action of changing schools. Obviously this is not something to do lightly over trivial issues but there are occasions when it is the best solution, especially if your child is so deeply unhappy it is making him ill or ruining his life. Before you request a change, visit the alternative schools so you are sure the new one will be an improvement.
Your request for a school transfer should be made to your local education authority. Provided both the new and existing heads are happy with the change and the new arrangement will not be more expensive, the transfer is likely to be granted. However, you may have to fight hard for a change to a school in another area or one run by a voluntary society because of the costs involved (see chapter 10).
Any child who is away from school loses out on contact with friends and on continuity of work. If your child is away a great deal, he may not feel properly part of the school when he is there. The other children will be in groups of friends to which he does not belong and lessons will usually be based on work he hasn't done so subjects like maths may be completely incomprehensible. Not surprisingly, he can easily lose his motivation for school tasks and even grow to hate going.
If you know your child is likely to have many absences, it's important to have a good plan worked out with the school to help him cope. Work can be set for him to do at home or in hospital when he is well enough. If this is worked out carefully, he should be reasonably up-to-date when he returns. If you can persuade your LEA to provide a home tutor, her regular visits can increase your child's motivation to do the work as well as providing any necessary help.
Ideally, this plan needs to be worked out in advance, not when he has already been away for ages. If you know this situation is likely to arise, it's better to have a plan just in case, even if it is never used, than to hit a bad patch of health with no help available. It also helps to have the plan in writing, either on its own or as part of his statement if he has one. We found personally that, when the need arises, a plan formally laid down in this way works better than vague promises.