Learning Disability Today
Supporting professionals working in learning disability and autism services

Gone, but not forgotten

The death of a child in a special school is always traumatic, but it is important to include the other pupils in the grieving process and a bereavement policy can be crucial in realising this. Sophie Goodchild reports.

“Is Chloe coming back?” was the question children at St Nicholas School in Chippenham, Wiltshire, asked when their friend Chloe Palmer-White died in January 2015. Death is a fact of life that sadly special schools like St Nicholas confront more often than those in the mainstream sector because children with learning disabilities are statistically more likely to die young because of health issues. Teachers therefore face the challenge of how to deal with bereavement and the sense of loss that inevitably accompanies death.

In the absence of any official guidance, schools have developed their own policies and approaches to bereavement. Memory gardens, giant artificial butterfly decorations and metal trees with leaves inscribed with pupil’s names are just some of the ways children that have passed away are commemorated. In the case of St Nicholas, teachers used its annual Friendship Day ceremony on June 19 as an opportunity to celebrate the life of 12-year-old Chloe, as well as those of other pupils. There were songs, poems and flowers with the event culminating in a balloon release to remember classmates who had departed.

It was a day for “everyone coming together and remembering,” says Bruce Douglas, former headmaster of the school. As well as helping to organise the day, Douglas also was instrumental in drawing up the school’s bereavement policy, which he says has enabled staff to handle deaths when they occur in a sensitive and responsible manner.

The policy includes verifying the news of a death and establishing the wishes of the bereaved family, who may wish to wait before making their child’s death public, as well as giving other parents the opportunity to pick their children up early when the announcement is made. “We have to be responsible and parents may not wish their children to hear the sad news and staff may also become tongue-tied when they have to inform others so a script is available in the school office,” says Douglas, now headmaster of Wyvern Academy in Dorset.

But do children with learning disabilities react differently to death than their peers without? Few studies have been carried out into this issue. However, there is an assumption that those on the autism spectrum in particular are somehow less emotional and do not feel loss. Or that they need protecting from the reality of death. All these beliefs are misguided and could lead to the impact of loss on a child being missed, says Douglas.

In his experience, it is wrong to assume that “just because someone has cognitive difficulties then they won’t be reacting on an emotional level.” On the contrary, children in special schools are sensitive to the “emotional atmosphere” in a room and detect emotions in parents. “There are pupils whose ability to communicate is affected so you don’t always get back the reaction you would expect but it’s crucial to treat all human beings with dignity and make a new experience [like death] tangible for them,” says Douglas.

Adapting to individual needs

School staff therefore have a vital role in approaching death in a careful way. It is crucial teachers and support staff address the specific needs of individual children with disabilities and adapt how they communicate accordingly, according to Dr Judith Brown, head of knowledge and expertise at the National Autistic Society. Avoiding idioms such as ‘passed away’ and not making false promises like ‘everything will be OK tomorrow’ are crucial, she says.

It is also important to explain how a death will influence their day-to-day schedule and help them cope with unexpected changes at school. “The disruption to daily routine caused by death like a classmate’s name not being called out in the register can be devastating,” says Brown. “The grieving process is extremely challenging for students on the autism spectrum but the right support from those around them including teachers will make a huge difference.”

Taboos over how to handle death mean society in general struggles with bereavement. There is a risk that children with special needs are excluded from the mourning process because it is felt they need protecting, says clinical psychologist and assistant director of bereavement at charity Child Bereavement UK Dr Katie Koehler. But this can mean they are denied the opportunity to “express their grief and remember the child that has died.”

Yet there are simple approaches that can be used to teach children about death, Koehler points out. For example, leaving a vase of fresh flowers in a classroom until they wither and fade or commemorating their dead friends in some of the ways already outlined in this article. “Our experience is people avoid the issue [of death] for fear of making the situation worse, that by mentioning death it makes it real,” says Koehler. “But children with special needs like anyone else should be supported in accepting this reality [of death].”

The key to offering successful support is through understanding a child’s concept of death based on a developmental approach rather than a medical one, she adds. For example, a child with a developmental age of four will only have a rudimentary understanding such as ‘What will my friend eat when they are underground?’ whereas one with that of an eight-year-old will be more sophisticated. How they communicate, such as verbally or through the Makaton sign language programme, is also an important issue when it comes to how they are told about death.

Including everyone

Of course, it is not just the children in special schools who are affected by the death of a classmate. From taxi drivers who provide transport services to the parents of other children in the class, everyone who knew them will respond to the devastating news in their own way. Therefore, it is important that the school does not exclude anyone from the process of celebrating the life of the dead child, according to Elizabeth Gibbins, a teacher at Watling View School in St Albans, Hertfordshire.

“The bond between parents is particularly strong because their children will have been at the same school all their life,” she says. “They will have formed a tight network based on shared experience.”

During her time as a teacher at Hillcrest School in Bedfordshire – it has since been renamed – Gibbins developed her own bereavement policy after a student died suddenly and she discovered there were no procedures in place to support the other students and staff effectively. In addition, there was scant advice available online on how to handle such loss.

Drawn up in 2007, her guidance suggests titles of books on handling death that are appropriate for children and young adults with special needs, and it outlines the level of understanding a child is likely to have according to their age. “Whatever the level of understanding about the bereavement, we have a duty to help and support our young people when they could be feeling their most vulnerable, in the way that best meets their needs and level of understanding,” says Gibbins.

Most experts agree that special schools are experienced and effective at how they handle bereavement. For some that means poems and butterflies, for others memory gardens. All these approaches go some way to help children with learning disabilities to come to terms with death, an experience that is never easy for anyone but can be made more bearable with the right support.

About the author

Sophie Goodchild is a freelance health and social care journalist

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