Dear OJ,
I very much hope I'm not being insensitive, but I thought perhaps I might share my experiences.
I was 15 when my mum died, and my brother just 11. Of course, neither of us have autism so our experiences may be very different, but perhaps there's something of interest.
Our mum died of skin cancer, but it was the metastases in the brain that killed her finally. Reading through that timeline, much of it ties exactly with my experience, although it was all so very much quicker for us.
The night she finally died, she had been pretty unresponsive for about 24 hours. The doctor came and I think probably told my dad it was only a matter of hours, although I'm only guessing that. Anyway, that night we moved our mattresses into their room and all four of us slept in the room together. My mum's breathing definitely sounded different and I suppose it could have been scary (it so sounded as though she needed to cough, but she couldn't), but instead we talked about holiday and plans and pleasant and exciting things like that.
Eventually my brother and I fell asleep (don't know if my dad ever did), and my dad then woke us up at about 2.30am to say that she had just died. I don't know how long that was after she actually died, but not long at all, I don't think. It was very clear she had gone, difficult to pin down why, but definitely things were different -all the noise had stopped, but at that stage she did still look very much like herself. That changed quite rapidly, within hours, and I definitely found 'her' more frightening after a couple of hours once the muscles had started to change etc etc.
Anyway, my dad then called various friends and relatives who came round. Some went to sit with her for a bit, others just drank tea and stayed with us. I remember quite enjoying all these people coming round, although perhaps that is a terrible thing to say.
Eventually we went back to sleep (in another bedroom) for a couple fo hours, and the undertaker arrived to take my mum away at about 8am. My dad stayed with us in the kitchen whilst all of that was going on, with the door shut so that we couldn't see or hear anything that was going on as they took her away. It didn't feel artificial at all, but it did save us (and my dad) a sight that I suspect would have been quite difficult to witness, for him as well as us.
There were other slight modifications to 'standard' practice as regards the funeral etc to take account of our ages and make it easier for us, but I don't think you're ready to hear all that now.
Looking back, I'm glad that my dad spent those moments alone with my mum, before he woke us up, and I'm also actually quite glad that I didn't witness her actual moment of passing, although I still feel I was there. I think the sense of wnating to bring her back might have been too strong to deal with at that age.
Anyway, I do hope I haven't offended. Simply my experiences and I think nobody can ever tell you what is or is not hte right thing to do. Everything you do will be the right thing, so try not to worry, but just 'be' over the next few weeks.
With love, and hugs for what you're going though,xx