How to explain 'death' to a 4yo with ASD

[sayjay]

Hi, just looking for thoughts really.
My mum, DS's beloved Grandma, has terminal cancer. although she is defying statistical prediction and still very much with us and enjoying life she is very likely to pass away while DS is still quite young.

His other grandmother's dog has recently died and I have been considering discussing this with him and introducing the idea of death/dying - rather than saying she's gone to live on a farm etc

I'm a bit wary of terms to use with him eg want to avoid 'gone to sleep and won't wake up' as likely to cause him to panic about sleeping!

any ideas - or book suggestions etc?

(sorry about punctuation/grammar - tis late and dark)

You could try a social story but very basic given his age. Maybe some like

This is my grandma, she is very lovely and we enjoy doing .... Together.

Sometimes people get sick and go to the doctors and he makes them better.

Sometimes the doctors can't make them better. When peopledont get better they die.

When someone dies it means that we cant see them anymore and this make people sad.

My grandma is sick and the doctors can't make her better, this means one day she will die and we won't see her anymore.

It is ok to be sad about this and many people who love grandma will be crying and be sad.

I can still try and think about nice things grandma did and see her in photos.
If I'm feeling sad an missing grandma I will try an tell my mummy "I miss grandma and am feeling sad"

Not sure if that's suitable, and whether you want to add anything about heaven or stars but that will be hard for a kid with Asd to get their head round, which is why it's basic and very too the point.

Hope it's of some help and so sorry your having to do this

Should have said to include photos of course BUT it must link to what is written on each page. Each page should have no more than two sentences at this kinda age.

Lisa, once again your social story skill astounds me.

Sayjay - sorry for your mum and I hope she keeps confounding the medical experts :(

Death is a difficult one, as you say going to sleep and not waking up, is something ds is terrified of, also getting sick and then dying is something he also doesnt understand and would think he was going to die from a cold etc.

I found it better with ds to try and explain life, rather than death iyswim, i explained the cycle of life, using plants/flowers etc as an example, you plant a seed, it grows etc, etc, then of course it dies and the cycle starts all over again.

When our old cat died recenty i literally just told ds that she had died and waited for him to ask questions. He did ask what happens after you die and i told him no one knows for sure, that some people believe in the cycle of life and some believe in heaven.

He wants to believe in heaven, even though the rest of us in this house dont. My 2 older boys also believed in heaven, until they were old enough to deal with death and reach their own conclusions.

I explained death very early to my ds. I actually showed him a bird that had died; he asked was it asleep (no), would it ever move again (no), were the other birds sad (yes). And then whenever the subject arose I reminded him of the bird we saw, which meant more complicated explanations had someting concrete to link to.

A bit graphic, but I was relieved not having to start from scratch when we did have a death in the family.

Perhaps best not to discuss grandma in this context if she's pretty well at the moment. DS used to ask older-looking people if they might be going to die soon . The otherwise excellent winston's wish website didn't have any helpful suggestions to nip that in the bud!

And statistical predictions are a very inexact science so I hope they continue to be inaccurate enough for your family to all enjoy each other for some considerable time to come.

Thank you all very much for your replies.

Lisa - that story is amazing - thank you. I feel, though, for us, it would be too soon to use it just now. She is fairly well and fairly fit and I want him to enjoy being with her without dwelling/obsessing on her death like me ,but if she gets v sick or when she does die, I will certainly use what you have written to make him a story. (S.stories work really well for him). Thanks again

I like the idea of looking at life cycles in nature too, claw. I do believe Mum will go to heaven - but like lisa says, a difficult, abstract concept for a literal 4 yo.

Will look at winston's wish - thank you mariamagdalena

Confession time - not seen the lion king! Not his cuppa tea probably. Need an animated rail disaster movie

I told him today Granny was getting a new dog because her old dog had 'gone'
"why has it gone?" She has died - sometimes when people or animals get old they die, which means we don't see them anymore."mummy..............i need something to eat"

I wore my mum's ring and watch, got out scarves and familiar things. Any time DS showed an interest, I'd just acknowledge things he'd recognised and used really simple words in the hope that he'd understand she'd gone but we still love her. We did that a few times and I think he got it...

thank you
Just don't do what I did and make a throw away comment that we all have to die one day, and then have to dealing with a screaming crying child while driving on motorway because she doesn't want mummy to die not my finest hour

OP, try rewriting the social story about the dog? Then you may be able to generalise it later (much, much later, I hope).

My ds (also 4yo, asd) started asking about this recently (fascinated in family tree, where is my mummy's mummy etc). I tried the line about people just getting really old, going away, so they're no longer with us.

He persisted, asking again and again "but where do they go?" I eventually cracked and even though my family is jewish but not religious so rather embarrassed about this said they go a place called heaven. He came up with the classic "when I die will I go to Devon?" (To be fair we had recently been to Devon for a holiday)

Now he's applied the same logic to the world around, eg seeing an old, shrivelled conker and asking if that would be going to devon too

Sorry OP, that probably hasn't really helped has it

OP actually I really am sorry to have made light of this - so sorry about your mum

My Dad passed away in March.

DS sometimes asks to see him, or when he will. I always reply 'yes you can, but not today, maybe another day'.

When he asks if he is in hospital, I say 'no, he's not poorly any more, he's in his special house now!'

I'm not entirely satisfied with this, but ds does ask quite rarely and his language is just not up to explaining. i expect it will traumatise him.

He is starting to explore the subject a bit through the gingerbread man and also with the many 'danger' lessons we teach him i.e. what happens if you jump into deep water when you can't swim etc.

When my aunt died my uncle used sesame street to explain to my cousin who has ASD.

The episode where Mr Hopper dies and they explain it to big bird. It still moves me to tears and is mostly accepted as one of the highlights of childrens TV ever (they don't use 'gone'/'asleep' in it) It is an amazing episode. Uncle and cousin watched it together.

Sayjay, heaven is something that ds chose, i gave him the two options ie life cycle or heaven. He too took it quite literally and when i told him the cat had died, he burst out laughing as he had images of cats floating about in the sky!

But im guessing for him to choose that option, rather than the more concrete life cycle one, he must get some comfort from it, even if he does take it very literally.

He also takes Father Christmas very literally and couldnt sleep for ages, as he wanted to know how did this man get into our house, how does he know what ds's name is etc, etc

Wow - thanks again all. I'm moved by so much response - it's a very interesting discussion. Don't worry about making light of it bialystockandbloom you have to laugh, don't you? That's exactly the sort of situation I anticipate with my DS - that or one like lisa said, hysterics over a throw away remark! - or like claw says: him worrying about dying in his sleep or whenever he gets sick. Which is precisely why I started the thread

Inspired idea about doing the social story about the dog, wilson , will do, thanks.

He was not in anyway "attached" to the dog so I expect lots of from him but at least the concept of death is introduced, which is what I'm after. Would look a bit odd to an outsider though - I know you're not in the least bit concerned DS but Granny's dog has died and she's gone and we'll miss her and I've made you a book all about it

This made me LOL, thanks

"He is starting to explore the subject a bit through the gingerbread man "

wow - the sesame street episode is very good!

Linky?

video quality poor but sure there'll be others too