Having a child with autism has certainly taught me to be prepared. But can you ever really be prepared for someone's death? How do you explain death to a child with autism?
For a long time the big lad held the belief that all people died when they reached one hundred. I am not sure where that belief came from but I must admit that I didn't actually do very much to challenge it. Then something happened. My father was very sick and I had to return to England really quickly.
We explained this carefully to the big lad and he had only one simple, clear question.
Is grandad going to die?
Many of our deep conversations come out just before bedtime. Big lad has a hard time getting to sleep when his 'brain is too full'. He often asks me if I am coming upstairs. A cue that he wants to talk something through and one of the few times I can sneak cuddles under the duvet with him. I cherish these moments. I can feel a real connection with him. I can feel him beginning to make sense of this puzzling world he is in.
How is it with grandad? I answer the only way I know how. Honesty. Facts. No emotion. Rather like the amazing nurses at the hospital. I tell him not to worry, he is feeling a lot better!
That week we rang nana. The big lad spoke to her and then I heard:
Nana you are very old aren't you. When are you going to die?
I snatched the phone off him.
Luckily she hadn't heard!
Ok, obviously I still had some work to do!
But actually this opened up the discussion.
We talked about what happens when we get old.
We talked about how long people live.
We talked about changes in hearing, sight, ability to walk, remembering things.
I explained, I prepared...
When people die you don't see them anymore.
Nana died a few months later.
I did not hide my feelings or emotions in front of the big lad!
I did however explain to him why I was sad.
I told him it was ok to cry.
I explained that we would never see nana again and that this made me feel sad.
I explained that it is normal to feel sad at first but that it would get easier and that I would remember the happy moments.
My husbands immediate response was that the children would not attend the funeral. Mine was more measured as I believed that the boys needed some closure. We discussed our options with big lad's psychologist. The compromise that suited us best was that the boys were looked after by one of my best friends during the funeral but that they attend the reception afterwards.
It turned out that I was worrying about the wrong child.
When we arrived at the reception. The little man asked, is nana in there?
He then asked his uncle if nana had looked like this (cue zombie face) when she died.
A few days after the funeral, at bed-time, the big lad asked if we could talk.
Why do people have to die?
What is heaven like?
Is nana still old there?
Is she still sick in heaven?
Will you be old or young when you go to heaven?
If you are a child in heaven how will I know you?
He had obviously been thinking deeply about this.
These are the things that were really worrying him and right up there was being seperated from me.
Another example of how autistic children do make connections, they do feel emotions.
Then he hit me with it.
I don't think that heaven can be the best place because I think this is the best place, with you and daddy and little man, here.
I couldn't breathe...
I wanted to capture that moment, that feeling of love, for ever!
Who was helping who here?
You can find lots of information on the internet about explaining death to children.
When dealing with death and bereavement:
Try to stick to you child's routine
Be clear. e.g. you will not see X again. (Not. X went to sleep.)
Use past experiences e.g. pets dying.
Be prepared for behaviour changes e.g. aggression or rigid adherence to routine.
I found some information for teaching autistic children about bereavement at the National Autistic society website and here:
How to explain death to children and young people...
Below are some more links to information about helping children deal with bereavement.
Talking to children about death.
Helping your child deal with death.
Parents tips, death and grieving.
Helping kids with autism spectrum disorder navigate bereavement.
When you are dealing with your own grief it can be very difficult to answer your child's questions. But it is essential that you do for their peace and yours.
You never know they might end up teaching you a few things too!