If your parent died when you were a child, what helped?

[DyingParentOf9YO]

I have terminal Cancer with

Hey OP, I'm sorry for your situation. I have high functioning ASD and I lost my dad unexpectedly at 11 due to a heart aneurysm and it was the single worst thing that has ever happened to me and at 23, is still affecting me now.

You need to tell him your dying. The sooner he knows the sooner he can start processing what is happening. Obviously as autistics we like and thrive from routine. That's going to go upside down when you die. The sooner he's able to start processing it himself, the better. Mental preparation obviously doesn't remove the trauma but my clearest memory of how I felt was out of control. I had no idea what was going on. There were too many people in the house and my dad was gone. I remember feeling like I was drowning, suffocation, choking and wanting to vomit all at once while my heart was about to explode and all I heard was white noise. I didn't understand what was being said to me and I lost the ability to talk for the next two years. I could rant and rave and scream, but I couldn't engage in conversation.

This is never going to be easy for your son, but as an autistic adult I can see what would have made my situation easier. Change, good or bad is terrifying to us and this sort of change is horrific and traumatising and the only way to ease it for your son is to start preparing him for what is going to happen to you, if you have planned your funeral tell him what is going to happen and what to expect, who he is going to live with and what will come next in the future. Remind him of what will stay the same and what will change and why and how. And tell him how much you love him and that this isn't what you want but that this is what is going to happen and you can't change that or come back once it does. Write cards or letters or something he can hold onto as he gets older. Because it's hell and that'll help.

When my dad died I took to wearing his jackets and cardigans and coats because I wanted to be near him and wanted him to come back. Then I had a breakdown and took down/turned around all of the photos of him/us because he didn't love me enough to stay so I didn't want to look at him. Which logically I knew made no sense but it was the only way I could cope. But it got better, it took years but it has got to a point where I am fine and I am coping and loving life, but it has irreversibly changed me as a person. We are shaped by our experiences and this is one that is going have an impact of massive proportions. I have anxiety, OCD and have struggled with selective mutism and depression on and off my entire life (before dad passed) but these were massively exacerbated when that happens.

He needs reassurance after being told and after you pass, that it's not going to happen to his dad or stepdad, that he isn't going to be left alone and that he is loved and supported. Every effort needs to be make to keep things as normal as possible for him.

Warn people that 'I'm sorry for your loss or similar sentiments' wont go down well. He'll get to a point where he'll want to punch the next person who says it. Instead they should ask him how he is doing. People often give condolences cards, I hated them, they remind you of what you have lost and once when my mother was distracted I collected them and burnt/shredded them up because I hated them so much.

Leave him to grieve in his own way and in his own time. Autistic people's expressions and behaviour doesn't always match what is going on inside their heads and he may look fine, but his world will be collapsing inside of him. This is normal, we just process things differently. He'll be hurting and angry and lash out but he'll want nothing more than to be held and told everything is ok. But the change is so horrific and jarring that he won't be ok for quite a long time afterwards.

Please message or tag me if you have anymore questions or want me to explain anything further. I'd be more than happy to help.

Hi OP I’m so sorry you are in this situation. There is a charity called Winston’s Wish which support bereaved children.
I hope you are being well looked after x

Hi op. Just wanted to give a handhold, can’t even begin to imagine what you are going through, you’ve been very brave to post, I’m sorry I’ve got nothing to add experience wise but just felt I had to comment xx

I haven't got direct experience of this but Winston's Wish have helped people I know and know of. I hope they can do the same for you

Therapy. And more therapy.

My parent died a long time ago. The main sympathies were for my mum, widowed young with two children to bring up on her own. Most of the talk around my loss was “children adjust easily” and the need for me to support/be company for my mum.

From then I was pretty much the second adult. I helped my mum use an atm for the first time, was the sounding board/consultant for various decisions, even went to my brother’s parents evenings. My dad was never discussed, my mum got rid of all of his stuff and we were just expected to move on with our lives.

I don’t think I have ever spoken about it. I don’t talk to anyone about anything, actually, as the lesson i learned was to keep my feelings to myself and not bother anyone with them. Especially not my mum who was dealing with being widowed and her own grief.

So get him a therapist. Someone he can talk to and let it all out without feeling he is burdening or adding to the grief of others. I’d also ask your close friends to write him cards with their numbers in and a note that he can get in touch in a week, a year, in 30 years.

When you say stepfather do you mean the childs step father? Where is his bio dad? Is there any other family? He needs to have other he can go to if he can.

Thank you to everyone who replied. I'll have a good think about what you've all said before replying.

Thanks as well to the user who PM'd me, I will reply to you too as soon as I can.

My DF died when I was 14 after a very long illness. What would have helped me was being kept in the loop - I was kept away from visiting him in the last few months and excluded from his funeral; that had a huge impact on me and I only really dealt with it psychologically in my 40's. There was also the whole thing as a previous poster said that I was assumed to be able to cope because I was a child, and nobody said to me that they were sorry for my dad's death, the whole emphasis was on how awful it was for my mum.
So I guess I'm saying that you need to involve your son so that he is as prepared as he can be. I would second Winston's Wish and also the Child Bereavement Trust.

My dad fell ill one New years day, he died at the beginning of May. I was 6. I had worked out he was dying but when I asked the adults around me it was denied as "he was going to get better". I didn't believe them based on the fact my mum smashed a plate from her hands when I told her I knew he was going to die. She was washing up, I was drying.

The evening before he died, I was picked up from school by a neighbour who took me to hers and I was there till late (11/12 ish) and was taken home asleep and put into bed. I woke up the next morning late for school, I saw there was stuff from the main bedroom in my room, I went onto the landing and saw my dad laid out for the wake in the main bedroom. I went hysterical.

For a long time, I blamed myself as he didn't get his goodnight kiss. No, it was lung cancer. I had been kept out of the way as he was deteriorating rapidly in the day before.

At his wake, an uncle told me dad was having "a big sleep", guess who had sleeping problems for several years afterwards as I was afraid they would put me in a box and put me in the ground. So avoid phrases like that.

When I was 11, my aunt who lived with us as we were growing up took ill, she had an operation to see the extent of cancer and it was everywhere, stomach, bones, pelvis, lung and blood. She wanted to come home to die, with the help of a rota of neighbours we looked after her and input from nurses and GPs. I sat with her for hours talking to her, (despite the fact she was deaf), I couldn't hold her hand due to pain but she knew I was there. I was there when she died.

Re information, none of it was hidden from me, I was told what was happening and why, I didn't get in-depth info but enough so I knew why some things were happening and that cancer was evil.

Fast forward to 20 years later and the evening I was told by the ward consultant that my mum was not long for this world and to organise any family she would want to see her, I don't have children but my brothers 3 youngest were 7, 4 and 18 months at the time.

He asked me what to tell them, I said give them the "fluffy" version of what is happening, the truth but fluffy,

So the next day they came to see their granny, they hugged and kissed her loads knowing it could be the last time they saw her. We took tons of photos.

They knew she was going to live with grandad in heaven as she was very sick and she would have no pain there. She was very sick but the Drs didn't know exactly why and that was why there were so many machines attached to her.

During her illness, they visited weekly as she held out longer than any of us expected, knowing they might not see her again.

At her funeral, the 8-year-old led us right behind the coffin out of the church. The other 2 released balloons that granny had in her hospital room as sending them back to her.

The oldest of those 2, the 18 month at the time doesnt recall it at all, have said being told the truth helped them come to terms with all easier than it could have been.

It was also easier when a well-meaning family friend spoke to me while I had the 18m and the 4 year old holding my hands on a visit to the shop to take a break off the ward and said, "so is it cancer do you think?" as we didn't know for sure.

She looked down and saw 2 small people looking up at her. The 4-year-old piped up, "no, they don't think its cancer but they aren't sure as granny is so sick and she is going to live with grandad where she wont have any pain" The look on friends face was funny in itself.

So like pp, I would involve your son, give a fluffy version as needed. Only the information that he can handle and bit by bit.

Utilise all other supports possible, make sure he has adults he can turn to and that will support him as far as possible. He can probably see something is going on but isn't aware of how bad it is and not having time to prepare will make it harder.

Have a look thru these -www.thebookpeople.co.uk/webapp/wcs/stores/servlet/article?articleId=top-10-best-books-for-children-about-death-bereavement-and-dying - you will get fuller reviews on Amazon

Also are his teachers / TA etc aware of your diagnosis as they will be able to help support him too.

When you are gone, he needs to keep a routine as normal as possible. That will help and will also be helpful re ASD. Yes, to therapy.

Also when you think the time is coming closer and as you are in hospice now, it is short term. I would look for something he likes possibly a photo blanket with pictures of both of you together over the years. This can be a great comfort. Give it to him and its to comfort him and hug him when you aren't here. Its to surround him in your love and wrap him in your arms. It's also something he can wrap himself in at your funeral if he is able to attend

for you, you are in a horrible position (mentally and physically)