The UK’s first SEND specialist bereavement book for parents and professionals launches nationwide this month, to support the estimated 44,496* parentally-bereaved children in the UK with special educational needs and/or disabilities.

The book, entitled We All Grieve, has been written by SEND expert Sarah Helton in collaboration with the childhood bereavement charity Winston’s Wish, in order to highlight the need to include children with SEND in conversations about death – and to plug the huge void in specialist resources available to parents/carers and professionals supporting a grieving child with special educational needs and/or disabilities.

“Death and disability is the double taboo”, says Clare Jeffree, a specialist SEND Lead Practitioner at Winston’s Wish, “something that’s often avoided in conversations.  Assumptions are made that children with SEND either need to be protected from grief, or are unable to be involved in the process of grieving, due to their impairments.  I once heard someone refer to themselves as a ‘forgotten mourner’.”

In fact, says the charity – which leads the way in the provision of specialist bereavement support for children with SEND – this group of children have additional needs which might make them more vulnerable in their responses to grief:

“The nature of a child’s SEND may make it difficult for them to understand what death really means, and how they can manage the changes that have occurred in their life as a result of the bereavement.  In the absence of strong memories of their own, it can also be hard for a child with SEND to remember the person who has died and to feel connected to them, and so it’s really important that those around them know how to support them.”

“Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement, and the needs of bereaved children with SEND have not always been considered”, Lord AJ, et al (2017).

As UK demand soars for additional support for children with SEND, professionals working with this group have historically found themselves having to adapt mainstream resources and ‘make do’.

SEND expert Sarah Helton says: “Grief is inclusive. We must remember that all children experience grief – this includes children with special educational needs and disabilities.  Having worked in the field of SEND for over 20 years I have taught many bereaved children and seen the lack of confidence that adults have to talk about death with children who have SEND. That is why We All Grieve is such an important book for families and schools – it provides the information, resources and confidence to talk about death and support all bereaved children.”

Clare Jeffree concludes: “In the past, there have been very few resources available to support this group of children.  It is our hope that with the aid of this new publication, we can highlight the importance of acknowledging death for children with SEND, as well as providing practical ideas for both parents/carers, schools and other professionals, to be able to use with children, to support them following the death of someone important in their life.”

We All Grieve, which has been possible thanks to funding from The True Colours Trust, covers a broad range of SEND, including Autistic Spectrum Disorder and Profound Multiple Learning Difficulties, and aims to support families, SEND schools, mainstream schools, hospices (child and adult), social care services, day centres and residential care providers all over the UK.  It looks at how children with SEND are affected by a bereavement and how those around them can support them to develop the child’s understanding of death and loss.  It also offers information, practical suggestions and ideas for activities, as well as where to find other support.

The book is available to buy now from the Winston’s Wish website, forming part of its wider suite of resources which are always written with a dual audience of parents/carers and professionals in mind.

“As a mum of an additional needs child, you learn how to find help and support for all the challenges thrown at you. When Paul died I could find a bit of information on helping children with bereavement – but nothing for my child. Nobody else knew how to support us. Now we have this – for me, for the school, the support staff and for my family. Thank you Winston’s Wish.”  Liza – mum of a bereaved child with special educational needs.

If you are a parent/carer or professional supporting a child who has specialist needs or disabilities after the death of their parent or sibling, you can access free professional advice and guidance through the Winston’s Wish Freephone National Helpline on 08088 020 021 – which is the gateway to all its wider services – as well as through its website

*Figures from the Department for Education (January 2017) show that 14.4% of pupils in England have special educational needs. If we apply this to the Childhood Bereavement Network’s estimate of the number of bereaved children in the UK (309,000), it suggests there is currently a population of 44,496 bereaved children in the UK with SEND.

Further support:

Supporting bereaved children with SEND

Do children with SEND understand death?

Order We All Grieve from Winston’s Wish