We can be closely involved for half or two-thirds of a child's whole life, which makes it vital that we get it right

3rd June 2005 at 01:00

It doesn't seem right, but children die. Occasionally it happens in mainstream schools, but in special schools it is more common. A number of our pupils have life-limiting conditions, but even when it is half expected, it is still a terrible shock when a child dies. It is hard to have a protocol in place because each time it is different. What happened? Where were they? Who needs to know?

Staff who work with the child must be told straight away: teachers, teaching assistants, lunchtime supervisors, bus escorts and physiotherapists. Then there are the people who have worked with him or her in the past, people who may now work elsewhere: therapists, community nurses, doctors, supply teachers and visiting teachers. All of them must sensitively be given the news and then supported.

It can be very difficult for staff who have worked closely with the pupil.

They can become very attached to a child with profound and multiple learning difficulties, having supported them in their care and education.

We warn our staff about the dangers of getting too emotionally involved, but they couldn't really do the job if they didn't care about the children.

Other parents must be told, but in the right way and at the right time. Some will have children with similar conditions. And what about the other children? It's hard enough for us to understand why people must die; if you're a small child with learning difficulties and missing your friend, it can be almost impossible to grasp. As with other aspects of education, we are straightforward and honest and answer questions as well as we can.

I wouldn't presume to guess what it is like for the family: I can only try to imagine their grief and the big hole that suddenly appears in their lives. Often, with special needs children, family life has been geared around hospital and hospice visits, wheelchair clinics and respite arrangements and, of course, the special school. We have often supported the family from early days and have been a haven where they and their child have been accepted, valued, heard and helped. Suddenly all that support is gone too - not that we won't still offer it, but it can be hard for a family to come back.

I'm amazed at how brave our bereaved families are. They often do come back, sometimes with toys that belonged to their child, or with a donation for equipment that serves both as a memorial and something the current children will enjoy for a long time.

Sometimes we know that a child may not live for very long. They may have conditions that mean they are losing skills, and this gives us a challenge when planning their programme and setting targets. Sometimes those targets are to maintain a skill or to gain a compensatory skill, for example, to use a wheelchair when they can no longer walk or to use an electronic aid when they can no longer talk. This does nothing for target-setting procedure and league table results, but they are the least of our worries.

The important thing is for the child to be happy and fulfilled, and it makes us all the more determined that they have a good time at school, experience as much as possible and feel supported and still valued as their skills diminish. Knowing a child may live only for a short time means it is so important to help make that life full and rich.

Most teachers will be involved in a pupil's life for two or three years. We can be closely involved for half or two-thirds of a child's whole life, which makes it vital that we get it right, and makes it such a privilege and responsibility to be in that position.

Maria Corby is deputy head of a special school for pupils with severe and multiple learning difficulties. She writes under a pseudonym

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