When my mother-in-law died a few months ago at the age of 100, she left a huge gap in our lives. She had lived with us for 18 years and she was, to the very end, a vital part of our everyday world.

A close-to-perfect MIL, she kept our household accounts, managed the family grapevine, counselled the staff and taught every child she could lay her hands on, almost until the very end. About two months before her death, she weakened visibly, slept more, ate less. Her care took up more and more of my time, and we all spent our free hours in her room, chatting quietly when she was awake, doing our work there when she slept.

Through it all, my daughter, Moy Moy, watched in silence. Moy has a profound disability and is completely dependent upon us for everything. She had a special relationship with her grandmother, which grew as Mummy became more dependent herself. Moy couldn’t speak; Mummy couldn’t hear. They were both fragile and needed a lot of help to bathe, dress and eat. They seemed to understand each other.

When Mummy died, I don’t think we did enough to help Moy Moy with her grief and I’m writing this now because I don’t want others to make the same mistake.

People with intellectual disabilities may not show their sorrow in the same way as typical people, and it’s a common misconception that since they don’t understand death, they don’t feel it. Another belief is that people with disability should be protected from death; in many families, the person is never even informed. During the immediate aftermath, when the rituals are happening, the disabled person may be sent away, or excluded from the rites, or misled into believing the person is simply away and will eventually return.

This kind of deception has many negative repercussions, even if it is meant kindly. Not only does deception about death not help, it actually makes the experience worse. Aware that something dramatic has happened, even if she cannot understand the details, the person feels confused and threatened. By the time she finally realises the truth, the rest of the family may have gone back to their routines; the person is left to grieve alone.

How to explain death to kids with intellectual disabilities

Here are suggestions for explaining death to children with intellectual disabilities and helping them deal with the loss. Some, we practiced with Moy Moy, and others, I wish we had. But I’ve learned it’s never too late to try. (Don’t be too hard on yourself if you missed it at the time. You were going through a hard time, too.)

Be honest.

Using whatever language or communication style you would use to share other news, tell the child what has happened. Explain its finality. Don’t leave room for the child to imagine it can be undone. If possible, let the child see the body. Let her touch the person’s hand or kiss their brow. As difficult as it may seem, for people who find abstract thought difficult, if not impossible, this concrete encounter will help them a lot to accept what has happened.

Involve the child as far as possible in expressions of grief and mourning.

In our family, this meant that Moy Moy was there as family members arrived. She saw them weeping and embracing and she, too, was embraced. She participated in draping a shawl over Mummy’s body and, like all of us, she scattered flowers on the bier and ahead of the procession. She came for the fourth-day ceremonies and listened to the stories and memories people shared. And she watched as, later, we sorted through and distributed Mummy’s possessions.

Avoid other big changes.

When someone dies, change is inevitable, especially if the person lived in the same house. If it was the primary caregiver, for the disabled person, the change may be cataclysmic. This is not the time to put her in a new school or to shift to another city, even if that makes sense for other reasons. Experts recommend delaying any further disruptions for at least a year.

Recognize that behaviour changes may be expressions of grief.

Some disabled people may become moody, depressed or aggressive after a loss, often after a prolonged period of seemingly normal behaviour. This may be because it takes them much longer to process what has happened and realise the loved one is truly not coming back. For families, the gap between the event and the reaction may be so long that they do not connect the two; it may feel like the child is acting irrationally and without reason.

Be prepared for ‘seeking behaviour.’

The disabled person may keep returning to places or situations that remind her of the departed one. A child may keep going into her mother’s room, or curling up in the chair her grandfather always sat in. She may take things that belonged to the deceased and hide them with her own things. This is normal and part of her coping repertoire. Help her verbalise what she is doing – “Oh, you’re missing Mom, aren’t you? This is where she used to get dressed, isn’t it?” – so she feels you understand her sadness.

Invent a new remembrance ritual.

We put a beautiful portrait of Mummy in the centre of our house. We kept a diya lit there almost constantly, and Moy Moy and I would place fresh flowers every day. As the days went by, we grew more and more casual about it, greeting Mummy like an old friend as we walked by on the way to bed or into the kitchen: “Hi Mummy! We miss you!” I would say on behalf of both of us.

We loved her. We miss her. By acknowledging the reality of the loss and supporting our kids through the inevitable sadness, they will be able to cope even with death. We have no choice about death’s happening, but we can choose how we deal with it.

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