Diagnosis

It can be extremely stressful coming to terms with what's happened to your child. For many parents, the most stressful time of all is when your child is first diagnosed, or is going through the process of trying to get a diagnosis. This process in itself can be very upsetting. What you may not realise is that many, many children with additional needs never get a specific diagnosis. Their needs may be so complex, or their symptoms do not fit a pattern, or there may simply be no identifiable reason for the child's condition.

• The pros and cons of diagnosis
• Your feelings about diagnosis
• Strategies for coping with diagnosis
• Second opinions

The pros and cons of diagnosis

There are pros and cons to having a diagnosis for your child. You might find, for instance, that having a specific diagnosis means your child is not eligible for certain schools, or for benefits that you thought were appropriate.

On the other hand, some parents find that having a specific diagnosis is very helpful because you can start to read up on the condition, join relevant local or national organisations, find out about latest research, and perhaps most importantly, meet other parents in the same boat as you. It can also be a great asset when you're applying for various benefits to be able to say my child has this syndrome or that disability.

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Your feelings about diagnosis

All parents feel and react differently to the knowledge that that there is something wrong with their child. Some might try to kid themselves for a long time that there is nothing wrong, others do the opposite and try really hard to convince their doctor or health visitor that there is a problem. Many parents feel completely devastated to start with, then somehow angry – 'why us? Did we do something wrong? Could we have done anything to prevent it? Why wasn't it picked up during my pregnancy?' And, certainly, all parents can feel bereft - 'This isn't the child I expected'.

Parents often feel crushingly guilty at some of the thoughts that go through their heads: 'I don't want this child, I won't be able to cope, I don't want to have to cope'. But you can be sure that whatever you're feeling at this moment - anger, despair, fear or overwhelming protectiveness - somebody has been there before.

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Strategies for coping with diagnosis

It takes some parents a few months, many more a few years, to feel that they are beginning to deal with this different life. However, some simple steps can help you to make better sense of what you are finding out about your child:

• If you are expecting news, take someone with you for support.
• Don't worry unnecessarily, make a list of questions you want to ask and take this with you. Ask about anything that is worrying you.
• Ask if you don't understand what has been said and don't be rushed, take time to think.
• Ask what will happen next, who you can speak to regularly for advice and where you can get more information.
• Professionals cannot always tell you how things will turn out.
• Remember, you have the right to be given information in a respectful and sensitive way, delivered by specially trained staff.
• Sharing news with other significant people in your life can be really tough, so ask for help.
• Talk about how you are feeling with the rest of the family but avoid blaming each other.

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Second opinions

Sometimes parents want medical diagnoses confirmed. Usually this is not because they don't trust the doctor, but simply that they need to feel absolutely sure that they have explored every possible avenue on their child's behalf. Some doctors are very sympathetic towards these feelings. Your child's GP or consultant may be willing to refer you to a different consultant for another opinion, but they don't have to do this if they don't agree that it's necessary.

Parents who can afford to might choose to approach consultants on a private basis. Private health care is very expensive and it is not at all easy to discover for yourself who is an expert in any particular condition. You may be able to get advice about these matters from The Patients' Association, the Care Quality Commission or the Patient Advice and Liaison Service (PALS).

If your child has a specific condition, the relevant local or national support group, may be able to provide advice or help. Some have medical experts of their own, or it may just help to talk with parents who have had to face similar situations or make the same tricky decision. There may be different approaches that other families have found, or simply a different angle on the problem. The Down's Heart Group, for example, is a charity that can give support and information to families relating to heart conditions associated with Down's Syndrome.

Another source of information is NHS Direct, the telephone health information service.