Supporting young PDAers with grief and loss

Being clear and honest can help young PDAers feel safe and maintains trust in the relationship you share. Using simple language that is honest and factual can avoid causing confusion.

• Instead of saying someone has “gone to sleep” or “gone to heaven”, it may be better to use more literal language, such as “Their heart has stopped working and they have died. Some people might say passed away.”
  
• If someone is unwell and may not recover, by sharing this openly and gently: “The doctors are helping as much as they can, but they might not get better.”, and allowing them to ask questions, it can build better understanding on their own terms.
  
• Offering false reassurance, such as ”Don’t worry, they’ll be fine.” can lead to confusion and mistrust. It’s okay to say you don’t have all the information yet but that you will share information with them when you do.

It can help to explain death as a natural part of life using examples from nature such as a flower wilting or a pet fish dying, or something else that they can relate to. This can make it easier to understand, and might help to encourage them to ask questions.

Books might also be useful to start conversations, although may be more suitable for younger children. Some suggestions are:

• Badger’s Parting Gifts by Susan Varley
• The Invisible String by Patrice Karst
• Grandpa’s Island by Benji Davies
• The Lonely Tree by Nicholas Halliday
• Dogger by Shirley Hughes

It is better to keep discussions short, clear, calm and honest with key ideas repeated if necessary. Allowing this to be child led as much as possible is also important.

Changes around death can make the world feel unpredictable to us all, but this may feel particularly so for young PDAers. Giving advance notice of events where possible, and explaining what to expect-especially around funerals, wakes or changes to the normal routine can help provide some predictability and create a sense of safety. If the situation allows it may also be helpful to visit venues in advance so that there is some familiarity with the layout, and any sensory challenges might be identified.

Other suggestions include:

• Preparing answers for common questions, such as “Where is their body now?” ”Can I see them?” and ”Will they feel anything?”
• Using social stories or resources to support communication about funerals and the wake but being mindful to avoid using demand-based language or expectations of them.
• Offering choices where possible such as whether they want to attend the funeral, the wake afterwards, or neither. Giving options of where else they could spend the time if it is essential that parent/carers attend.
• Involving them in small, collaborative, low demand ways, such as the choosing the colour of flowers, discussing what food to have at the wake, or finding a poem or music for the service.

Being flexible and understanding if plans change at the last minute can be tricky when all family members are feeling emotional, but it’s important to try and remember that young PDAers are doing their best. Having an “exit plan” or safe person to leave with can make attending any part of the day feel manageable.

How a young PDAer might show grief

Everyone experiences grief in their own way and young PDAers may not express emotions in the way others around them might expect. Some may appear calm and detached while others feel intense emotions of anger and sadness that can shift quickly. All these feelings are valid and may be felt and shown at different times.

A young PDAer might:

• Struggle to identify and name feelings.
• Avoid talking about the loss altogether.
• Need autonomy and familiarity within their environment, such as sticking to their chosen routines.
• Seek comfort through objects or creative outlets such as art or music.
• Ask many questions or focus on specific details. It can help to ask “What do you think?” to gauge their understanding and help them.

Even if the young person doesn’t seem outwardly sad, it is likely they will still be feeling the impact in their own way.

How to help a young PDAer with grief

Grief can heighten sensory sensitivities and young PDAers might need quiet time, familiar objects, or repetitive activities to self-regulate and manage emotions.

Small adjustments can be helpful:

• Offering time alone without pressure to talk.
• Keeping routines predictable where possible.
• Providing sensory comfort items — weighted blankets, music, or fidget toys.
• Allowing them to hold or keep something that connects them with the person who died, if that feels right for them.
• Suggesting gentle, regulating activities, such as creating something together.

You could support expressions of emotion by:

• Validating all feelings without judgment and an understanding that any feeling is okay.
• Encouraging safe ways to express emotions, such as drawing, gaming, writing, text messaging or talking side-by-side.
• Creating a “help and not-help” card that lists what soothes and what overwhelms during strong emotions. These might include a safe and quiet space, scheduling time to worry and writing worries down.
• Modelling openness by talking gently about your own feelings.
• Allowing for silence when words are hard to find and sadness is overwhelming.
• Discussing safe boundaries such as no hurting ourselves and others when anger is felt.

Remembering someone can bring comfort and connection to help a young PDAer hold on to positive memories while gradually finding ways to move forward.

Together, you could try:

• Making a memory box with photos, letters or drawings.
• Planting something special, like a tree or rosebush.
• Keeping a favourite photo nearby.
• Writing a letter or story.
• Watching a video or listenin to their voice.

Caring for someone who is grieving — especially if you are grieving too — can be exhausting. Try to make time for rest, reach out for peer support, and talk to someone you trust.

Connecting with others who understand PDA or bereavement can make a real difference.

There are many organisations that can provide support for grieving families. The organisation below is specifically tailored towards SEND children.

• Back Pocket Teacher-supporting SEND children through the grief and loss process https://backpocketteacher.co.uk/