Whatever your child's problem, there will be professionals involved with his care. Your contact with them can be very useful but may also be stressful. Meeting them reaffirms that your child is different, reawakening the emotions you thought you had under control. As a result, it's only natural for you to be super sensitive to any real or imagined lack of understanding on their parts, especially in the early months after diagnosis. I know I have shed many tears in hospital car parks and at home, after putting on a brave face during the actual appointments.
The professionals you see will each have some special skill to offer. They are well trained in their specific area of knowledge but will sometimes have had little or no training on how to get on with people or on how parents and children feel. The best ones work it out for themselves and are both understanding and approachable. The others may add to your problems by giving poor explanations, making you feel ignorant or just being brusque and offhand. This is often due to shyness or lack of understanding rather than plain nastiness.
Everyone has good and bad days. Working with sick and disabled children doesn't protect people from indigestion, troubles at home or plain exhaustion. Sometimes even the most caring professional may need to draw back, to give a little less of herself than usual. I am not trying to excuse all rudeness and bad behaviour, just pointing out that sometimes there are extenuating circumstances so don't condemn someone too quickly or assume a change in their attitude is your fault.
If you have read What Katy Did by Susan Coolidge, you may remember Cousin Helen's advice about everyone being like a box with two handles, a rough one and a smooth one. If you take the rough handle, the box is very difficult to carry but if you take the smooth one you can carry it easily.
Although the book is quite old now, the advice still works. You receive a far better response from people if you are pleasant to them. It costs nothing to be friendly and smiles are much more effective than scowls. I know this is difficult advice to follow when you have just spent two hours in a crowded waiting room with a fractious toddler, but there is nothing to be gained by starting an interview in a bad-temper.
I don't mean you should always be a doormat; far from it. The art is to be assertive rather than aggressive. If you are still unsure of something when the person you are visiting starts signalling the end of the interview by closing your file or giving the next appointment date, don't take the hint. Just stay put, smile pleasantly and ask for another explanation, demonstration or whatever you need. Don't feel guilty about asking for a little more time. Another few minutes then can save you hours of worry later or prevent you making mistakes with your child's treatment.
Although smiling is usually better than shouting, it's not always better than crying . It's possible to put on such a brave face that everyone thinks you are coping well without realising how tough life is at times. Although I am not recommending crocodile tears, no one will think badly of you if you cry.
A few tears may have more effect at showing how much you need help than any amount of words. Lowering your own emotional defences enough to cry may even help to break down the barriers between you and the professional concerned. As one self-professed bureaucrat told me, 'It's difficult to keep up an act when faced with someone crying. Tears can help break up a them/us attitude and replace it with a partnership'.
No professional approach is right for all parents. A social worker may seem strong and decisive to one parent while another feels she is bossy and over-bearing. One family may be delighted when their doctor discusses the choice of treatment with them while another may find the same approach threatening for it makes them feel responsible for the decisions made.
If you meet a professional whose approach or personality you don't like, it's sometimes possible to change. To make sure you don't opt for someone worse, ask other parents or professionals about the alternatives before you take any action. In the end, you may decide to put up with a difficult relationship if the help that person offers is the best available. In other words, you may be more willing to accept a brusque, offhand manner from the top specialist in your child's condition than you would the same attitude from an inexperienced social worker.
The large number of professionals involved with your child can cause problems just fitting in all the visits. You run out of time and energy eventually and fares can be a problem, especially if you or your partner are losing pay to attend appointments.
Each individual professional is only aware of the contact she has with you. Only you will know if this is the fifth appointment this week or that your child is tired of being prodded and poked. If you find things are getting too much, say so and give yourselves a rest. I usually choose to ditch school medicals and routine dental appointments but your priorities may be different. Don't forget to tell them you are not coming so the appointment can be given to someone else.
Another difficulty caused by the number of people involved is communication or, more precisely, the lack of it. You may be in contact with professionals from several departments - perhaps social services, education and the health authority - each of which has separate organisation and finance. But your child's needs overlap these departmental boundaries.
Some professionals may recommend help they can't provide. For example, a social worker or doctor may offer opinions on suitable schools although such decisions are really the field of the education department. If someone recommends particular help for your child, ask if they are in a position to organise its provision. If they can't, ask who can.
One method of communication used by some professionals (especially non-medical ones like social workers and education specialists) is the case conference. This brings together various professionals connected with your child so joint plans and decisions can be made. Sometimes parents are included too, so if you know one is to be held and you are not invited, ask if you can attend. You can also suggest a case conference should be held if you are worried the experts are not communicating with each other. You may not get the meeting but just asking for it should show everyone a problem exists.
If you do attend a case conference, you may find it rather daunting. The other people present will probably know each other as well as having the confidence of experience and professional expertise. You will only know them through their involvement with your child and some people may be strangers. You will also be the only one present who is emotionally involved so it can help if your partner goes too as you will feel less out-numbered. Don't be afraid to take some notes with you such as a list of points you want discussed, dates of absence from school or anything else you feel is relevant.
Nearly all visits to clinics involve waiting around for ages. The time allowed for appointments is rarely long enough so the delays worsen as the session progresses. If you have a choice, always opt for an early appointment unless it would involve you in a mad rush to get there on time.
Incidentally, a phenomenon called Sod's Law operates at clinics. I discovered it the only time we ever wandered into outpatients fifteen minutes late. The waiting room was deserted except for two nurses and a consultant who were wondering where we were. Remember, the day you don't arrive on time because they always run late is the day they won't.
Always go to clinics expecting to be kept waiting. Arm yourself with spare nappies, feeds, colouring books or whatever else is appropriate to your family. If you are seen straight away, you will be so pleased that you won't mind having dragged all that unnecessary clutter with you.
If your child is particularly difficult to entertain and the waiting room is bulging, ask for a rough idea of how long you will have to wait. Then you can go away to get a drink or find a place where shouting, screaming and running about attract less attention. Don't forget to tell someone you will be coming back or they may think you have gone home.
Once your turn finally arrives, it's easy to forget all the questions you planned to ask. Many parents, including us, write them down beforehand as a reminder. It's also possible to phone afterwards to check on something you forgot about - no one is so important you can't contact them.
All the professionals working with your child are part of a team to which each contributes knowledge of his or her own special field. It's important to remember that you are part of that team too. Your speciality is your child. You are with him all the time and know him far better than anyone else. The professionals advise you how to care for your child. You decide how much of that advice to follow. You are best placed to see when different suggestions conflict with each other and to realise when you need extra help. Be confident - you are important too.