What happens when I die?

Oh gawd I hear you say, what a thing to discuss so early on in 2020.

However I do think about this a lot.

My sons with Fragile X Syndrome/Autism/Epilepsy and Anxiety Disorder are extremely lucky as all three of them are in either supported living, sheltered housing or a care home.  When I say care home, it’s not full of elderly people, its Jack living in a cottage with two ladies with 24 hour care – and we are so grateful for all the support each of the boys receive.

I started thinking about how the boys care teams would explain why they cannot see me anymore and how this will be managed when I die?  How will it be handled?  Will Elliot my son who does not have this shitty disability be left to try and explain to his brothers that Mum has gone to be a star in the sky?

A star in the sky you ask??

Jared gets quite fixated about people who die – usually someone famous, although we have had special people in our lives who have died so trying to explain to him what happens has been quite difficult.  However telling Jared that when a person dies they become a star in the sky has helped him enormously to cope with this sometimes difficult conversation.  He often sits outside in the dark looking up at the sky, talking away to himself and saluting upwards.  When I have asked him what is he doing he says he is talking to the stars and praying, and then reels off everyone he is talking to, including Nan’s, Granddads, Ayrton Senna (his favourite racing driver) and our special friend Ronnie – whom he adored.  All these people have been gone for some time but Jared still has them all in his heart.

Jack on the other hand cannot comprehend initially with what he is being told, it takes time for Jack to think about what is being said to him and then he gets it!

Many years ago he was living in a large house with ten other young adults all on the Autistic Spectrum with other complex disabilities.  One of the boys from the house managed to escape and jumped from a motorway bridge and died.  Staff discussed this terrible tragedy in front of Jack assuming he did not understand – he did.  This led to having a direct impact on Jack’s mental health, and his well being spiralled out of control and led to him having a breakdown – he was 25 when this happened.  The reasons for him having the breakdown are complex but perhaps if medical and psychological help and support had been given when this dreadful accident occurred he may have got through this awful period in his life, but there was no support.

Jack being non-verbal and with extreme anxieties, I feel anxious myself thinking how his complex needs will be managed.  He absolutely loves coming home for his weekend visits so if they were to suddenly stop would he have another breakdown?  How will this all be communicated?

Recently I came across this website https://booksbeyondwords.co.uk/ebooks/when-somsbody-dies?  Books designed for people with learning disabilities all in a picture format.  Baroness Sheila Hollins initially produced pictures to explain to her son Nigel who has a learning disability and had communication issues (he did not speak until he was eight) and was going on an adventure holiday.

By producing pictures of what he was going to be doing he then felt more in control.  Thirty years on, Beyond Words has distributed or sold 100,000 copies of its 57 titles, which cover everything from relationships to surviving abuse. Each title involves 100 learning disabled people as advisers or authors. There are 60 associated book clubs with 350-400 members. https://www.theguardian.com/society/2019/jun/04/sheila-hollins-learning-disability-care

I know that we have all been producing pictures for our sons and daughters with disabilities to enable them to understand and communicate what is going on in their world, but I did want to reiterate how important this visual tool is to them.

So back to my first paragraph – I have decided that I need to live to at least 150 so that I can ensure that all my boys know exactly what is happening to me.  If I do get an illness that is going to be lengthy at least I can explain what is happening to their Mummy, but if I go suddenly………………………….

To the well organised mind, death is but the next great adventure.  J. K. Rowling

To live in hearts we leave behind, is not to die.  Thomas Campbell

Happy New Year everyone and here’s to a very healthy, happy 2020