Advice please

and15

Hello

I'm after some advice please from other parents if possible please.we hsve just found out that my father in law has a life limiting condition.my 6 Yr old daughter whom has asd is close to him doesn't know.we would be grateful for any advice on how to broach the subject of death and dying with her for when the time comes.
Thank you in advance. 

Alex_Alumni

Hello @and15 and thanks for reaching out, I'm sorry no one has been able to get back to you before now. 

I think I'd encourage you to talk to somewhere like Cruse Bereavement Support, as they may be able to advise on the subject of death and dying. They also have a section on supporting children and young people, which I hope is helpful.

It must be an upsetting time for all of you, but it sounds like you're all very close, and ready to support each other as best you can. If we can help support you further, please ask

and15

Thank you Alex ill give it a try

Hannah_Alumni

I'm so sorry for what you are going through @and15 I want to send all my hopes you get to make so many more memories until that time

I also wanted to comment to say that the National Autistic Society has an excellent guide for parents and the Autistic Girls Network have quite an extensive list of resources too. I hope they help you all. 

L_Volunteer

Hello @and15. Thank you for reaching out to us. I can really hear how difficult things are for you and your family at the moment.

As an autistic person, I will try to provide some words of wisdom as if I had to provide advice about how to talk about life-limiting conditions/death and dying.

I would say to be courageous and confident in talking about it rather than hiding it. Give preparation of what the life-limiting condition means for your father-in-law.

You know your daughter best though and her level of understanding. I would encourage you to target it to your daughter's level of understanding.

For example, sometimes social stories help if your daughter has more difficulties understanding language (written/spoken) than pictures. 

Also, reassure her that her feelings are ok no matter what they are. Some autistic people feel it strongly and others do not process it as quickly as you might anticipate.

Please don't hesitate to let us know if you would like to talk about this further or if there's anything else we can do that might support you and your family through this 

and15

HI L_Volunteer

Thank you so much I have used social stories before but never really thought about doing it re death and dying and its a good idea as she responds well to them.
Thank you so much 

L_Volunteer

You are welcome @and15. I recognise it is not always easy to automatically think about applying strategies to new situations, even if they have previously been helpful.

Please don't hesitate to let us know if there's anything else we can do to support you. Most importantly, I want you to know you don't have to face this alone 

Alex_Alumni

Hello again @and15 I hope you're all keeping well, how are things at the moment?

One of my colleagues within Scope, @Ema_Scope, is doing some research into how we can better support people looking to broach the subject of death and dying with a disabled relative.

If you're comfortable to, she'd be happy for you to email her on ema.thornhill@scope.org.uk to chat more about your experience