ARTICLE: Bereavement, Loss and Grief by Sarah Helton

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How to support children and adults with severe and profound intellectual disabilities with the issues of bereavement, loss and grief. Why should we talk about bereavement, loss and grief with people who have severe or profound intellectual disabilities? Because no one is immune to these issues, they are part of all our lives regardless of our cognitive understanding or level of communication skills.

In 2022, even after all that the world has endured over the past two years, death, bereavement and grief are still topics that are often avoided. If the bereaved and grieving person has severe (SID) or profound intellectual disabilities (PID) the subject tends to be even further neglected.

Let us first consider death. People who lack the cognitive ability to understand the finality of death or the verbal language to express how they are feeling, still need to be informed when someone close to them has died. At the very least they are going to notice that the person is no longer around, but it is highly likely that they will notice far more. 

When a baby’s mother or father dies, they pick up on the fact that this person is no longer around, that they no longer see, hear or smell the person or feel their touch. Individuals with SID and PID can have these experiences as well. They may also react to the mood of the people around them and the atmosphere of the home or other grieving environment. If we don’t try to include them in attempts to understand what is going on, it may leave them in a very anxious and vulnerable state.

When telling a person with SID or PID about a death, it is crucial to have a photograph of the person who has died, so that we can make it very clear who we are talking about. Having a few personal belongings would be beneficial too. For example, if the person always wore a certain hat or carried a favourite toy, show the individual these things and let them explore them as you are talking about the person who has died. Use very simple and concrete language to explain who has died and how. Be prepared to reiterate this information many times. It may take weeks, months, even years to understand that the person is not coming back.

Use concrete language. We aren’t born with a fear of death; it is something children acquire from adults and society as they grow up. If you ask children, who are able to use spoken language to express themselves, what words we should use, they invariably say ‘dead’, ‘death’ and ‘dying’. They want the information to be presented to them in a clear and precise manner – no fudging the issue and trying to wrap it up in euphemisms. Tell it as it is.

If we say: ‘I’m so sorry, but we’ve lost your friend’, they could very well try and look for that person, or cling to the belief that one day we will find or return to them again. Instead, we need to explain: ‘Sadly, Jonny has died. He was very unwell and the doctors and nurses tried as hard as they could, but sadly they couldn’t make him better.’ If the person then asks for more details, we must give them honest information (to the level that they are cognitively and emotionally able to handle), such as:‘His heart was so damaged that it stopped beating.’

Even if a person isn’t openly told about a death, they will overhear snippets of conversation and intuitively detect the emotions of the people around them. It is naive to think they won’t know that something has happened, even if they are not explicitly told.

People who are affected by a death deserve to be treated with respect and honesty. ‘Telling it as it is’ is a part of how we achieve this and ensure they get excellent support when they are grieving.

Regardless of the person’s level of understanding about death we support their grief. It doesn’t matter if they never understand the finality of death, we need to help them to manage their feelings and the changes in their lives that result from this bereavement. It is a transition that must be supported, just as we must support all other transitions and changes in their lives.

Dont be afraid. Many people avoid talking about death and grief with a friend or family member who has experienced a bereavement for fear of saying or doing something that will make the situation worse. If we are fearful of discussing death with our friends and family, we will no doubt be petrified of broaching the topic with an individual with SID or PID.

When anyone, regardless of their age, is bereaved, the worst has already happened – their loved one is no longer with them. It’s virtually impossible for us to make things worse for them with our words. Instead, we can help them by acknowledging their loss and supporting them with their grief. 

In the case of a bereaved person with SID or PID, this is crucial, as they are probably going to be unable to communicate their grief in the manner that we are typically used to – talking. This means that it is likely that their grief will go unrecognised.

How do individuals with severe or profound intellectual disabilities communicate grief? They may do this through changes in their behaviours. Such as disturbed sleep, wanting to eat more or less, not wanting to engage in activities that they typically enjoy, developing somatic pains such as headaches, tummy aches etc. We need to be looking out for differences in their daily routines and interactions with others. Too often such changes are put down to a medical reason or that it is part of the individual’s diagnosis/condition etc. Yes, such things need to be checked but, if they have experienced a significant loss, these changes may be part of the grieving process they are going through. We also need to look out for communications of grief through their use of words (if they have them) and/or use of augmentative and alternative communication methods. Repeatedly saying ‘football’ after Uncle John died (with whom they liked to watch football), could be a way of communicating that they’re missing Uncle John and the time that they spent together.

Grief isn’t just about death. Grief comes in many shapes and forms. It doesn’t matter if the person is experiencing grief related to moving home, a favourite carer moving to a new job or the loss of a beloved toy – we acknowledge the loss and support the grief in the same manner.

Acknowledge the loss. The best way to acknowledge loss is by talking about the person who has died, or the situation or thing that they are grieving for. Through the simple act of uttering the deceased person’s name or talking about how sorry we are that they miss a carer who has moved away, for example, we acknowledge their grief and show that we emphasise with the impact it is having on them. In the case of a bereavement, by saying the person’s name we are helping to keep that person’s memory alive and supporting the person with SID or PID to maintain a connection with them.

Answer their questions. Let the family know that you want to support their family member as much as possible, and that part of this will be to answer any questions they have. Very often, a bereaved child or individual with SID is more likely to ask questions of someone outside the family, as they don’t want to upset their relatives. If you are unable to answer a question straight away because you don’t have the necessary information, be honest and say: ‘I don’t know, but I will try to find out for you’ and then do so as quickly as possible.

Listen. Grief affects people in different ways and there is no way of anticipating how a person might respond, or how their emotions might fluctuate over time. However, if we listen, truly listen, they will tell us what they need and how they are feeling. 

True listening involves more than just using our ears, we also need to use our eyes. Observing the person’s behaviours will provide us with considerable information about their mood and level of resilience. Careful observation by everyone involved with the person will give us a picture of how much their behaviour has changed from what we would normally expect from them. Too far from the norm and for too long a period of time will be an indication that extra support is required. 

Would you like to learn more about how to support children and adults with severe and profound intellectual disabilities with the issues of bereavement, loss and grief?

See our on demand Bereavement, Loss and Grief online course. Find out more

Course leader – Sarah Helton 

Sarah has worked in the Special Educational Needs/Disabilities (SEND) field for 25 years and has an outstanding track record in a diverse range of roles (Deputy Head, Assistant Head, Teacher, Local Authority Education Officer and Educational Publisher).

She now works as BackPocketTeacher – a consultant, author and trainer in the field of child bereavement, specialising in the (sadly often overlooked) needs of bereaved children with SEND.

In Autumn 2020 Sarah began studying for a PhD alongside her work as BackPocketTeacher. She is researching how children with severe and profound learning disabilities communicate grief. Follow her studies via her website, blog, on Twitter @backpocketteach and Facebook @BackPocketTeacher.

Sarah is the author/creator of the following resources and books. All available here. 

  • Good Grief Toys® A set of wooden toys that help children to learn and talk about death, bereavement, grief and loss
  • A Special Kind of Grief The complete guide for supporting bereavement and loss in special schools (and other SEND settings)
  • Remembering Lucy An illustrated children’s storybook about grief and bereavement in a school.
  • A Jumble of Knotted Thoughts A sensory story to support children with bereavement and grief.
  • Bereavement and Loss Symbol Resource Set Designed in association with Widgit to help children, young people and their families through the process of bereavement and loss.