A Special Child in the Family

The Professionals

 

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Health Visitors and Community Nurses

A health visitor is a qualified nurse with midwifery experience who has completed a special training course. Although the course lasts a year and is very intensive, it has to cover a wide range of subjects so your health visitor may have only limited experience in the needs of special children and their families. However, she should know where to look for more information to fill the gaps in her knowledge. Her main concern is with pre-school children and their families and you are automatically referred to her when your baby is born.

Personality matters

The amount of support you receive from your health visitor is very dependent on her personality, her interest in children like yours and whether you actually like each other. Many mums find their health visitor invaluable. One even described hers as a "like a second mum". However not everyone is as fortunate.

If you find yours less than helpful, it could just be she doesn't understand your needs. If you ask for the specific information, she may be more useful. You can also try telling her how you feel and pointing out as calmly as possible anything she does which upsets you (like expecting you to attend the baby clinic, for example). Once she understands your feelings, her attitude may improve.

Ask if there is a health visitor for special needs children in your area. If there is, ask to be referred to her as she should have more information and a much greater understanding of how you feel. She should also have contacts with the local support services.

If your child's problems were not diagnosed or did not develop until after he started school, you will probably have lost contact with your health visitor. If you liked her, there is nothing to stop you contacting her again for information and advice on local support services. It is also still worth asking about a specialist health visitor as, if there is one, she may deal with special needs children of all ages.

Available help

Your health visitor is a good source of information and advice. As well as ordinary information about child care, she can advise you on nursing techniques which might be useful, although she won't carry them out for you. She should know about the help available locally and she can contact other agencies like social services on your behalf. She may also be willing to contact charities for you to arrange funding for any extra help or equipment you need. This is particularly useful if, like me, you find it difficult to ask for help yourself.

If your child is incontinent , your health visitor may be able to provide disposable nappies and plastic pants. Several mothers have complained to me that they only learnt about this service by chance so it is worth asking if it exists in your area.

Community nurses

Whereas all families with young children automatically have a health visitor, you will usually only have visits from a community (or district) nurse if your child has been referred to her by your GP or hospital. If you think a community nurse could help you, ask your GP to arrange it.

Although a doctor asks her to visit you originally, your nurse decides what care to offer and how long and how frequently to continue visiting. Like a health visitor, she can contact other people on your behalf such as social services or the housing department. She can suggest items that would simplify your child's care and advise you on how to get them. In particular, she may liase with your local Red Cross group to borrow equipment and she's another person who may be able to supply disposable nappies if your child is incontinent.

Unlike a health visitor, your community nurse offers practical nursing help. She can perform skilled tasks such as changing dressings and giving injections. She can also teach you any nursing techniques you need such as preventing bedsores.

Even if you don't need her help all the time, she may prove invaluable should your child's needs increase temporarily, perhaps after an operation. She is also a source of possible help if you are temporarily incapacitated and need help with giving your child nursing care. For example, she may be able to assist with bathing your immobile child if you break your arm or hurt your back.