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Grief and loss in children with intellectual disabilities

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Grief and loss in children with intellectual disabilities

Pamela L. Harding,

Psychologist (B Psych; P Grad Dip Psych)

Children grieve the loss of someone special in many different ways. For children with developmental delay, concepts such as death can be difficult to understand and the implications of that loss (permanence) can vary accordingly. It is important for parents and carers to take the time to explain loss in ways that are developmentally appropriate, taking into account the child’s emotional maturity as well as the child’s language and intellectual development.

Reactions to grief vary in every child however typically these can be physical, psychological, behavioural, and spiritual in nature. In young children as well as in children who have developmental delay, these reactions are often difficult to identify as the ability to express complex emotions is still largely under developed.

It is therefore important to pay close attention to children’s behaviours following a loss, being aware that reactions can vary in intensity, frequency and duration depending on the type of support the child receives.

Typical grief reactions observed can include:

Behavioural 

Regression and temporary loss of skills previously mastered such as toileting, or getting dressed independently.

Becoming more clingy

Lacking a reaction due to difficulties understanding the permanent nature of loss

Withdrawing from activities or others

Loss of interest in food

Difficulty sleeping or not wanting to sleep alone

Disruptive behaviours such as tantrums

Becoming more sensitive to others’ emotions and repeating those emotional behaviours seen in

other people who are grieving around them.

Emotional

Appearing sad or crying often.

Separation anxiety

Needing constant reassurance that things are ok.

Trying to make sense of what has happened by showing curiosity and interest in details / facts (lots of questions about death)

Confusion about what has happened: asking repetitively after the person who has passed away, or wanting to see the person.

Fear (of the dark, of being left on their own, of noises)

Somatic

Physical pains stomach aches or other complaints

What can help?

Strategies that can be helpful in supporting children during times of loss:

1. Ensure that basic needs are met (food, drink, sleep, affection)

2. Routine: keeping things as normal as possible is important in that it provides the child with a

sense of safety and predictability which allows him/her to regain some control over their

environment.

3. Provide reassurance: regardless of whether or not the child’s reaction is as you would expect,

provide reassurance that their feelings are normal and that the sadness will eventually decrease.

4. Help understanding: explain what has happened as honestly as possible, using simple factual

language. “Poppy has died and won’t be coming back”

5. Explain death: be concrete, use age appropriate visual resources such as books, social stories

and play to help understanding.

6. Allow opportunities for the child to express their grief: this can include reading and telling

stories, playing, drawing, making a memory box.

7. Be consistent in your answers: children may want to ask questions over and over again. It is

important for you to provide answers that are consistent, simple and factual as this allows the

child to make sense of what has happened.

8. Make use of rituals and symbols at home: prepare a farewell ceremony. Have photographs of

the person and take turns talking to him/her to say farewell.

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