Something that’s always on my mind , whether it’s at the back of my mind or I’m obsessing about it ,if I’m feeling vulnerable it’s always there!
The one topic none of us want to talk about ! Death
IF YOU DONT WANT TO READ MY MORBID THOUGHTS ITS BEST YOU SKIP THIS BLOG
Death is something I have openly discussed with other special needs parents in the past , I think parents of children with children that have disabilities are giving this topic more thought an intensity, because of the level of vulnerability and care planning we have to consider , any parent doesn’t want to think about dying and leaving there kids but, planning takes place to take care of legalities when the time comes, and can openly discuss with your children as they grow up so everybody is aware , those plans include the expectation that your children grow into well adjusted adults ,and are independent and even then it’s a sensitive subject naturally , this plan will be in place for my neurotupical children , however with Oscar we are faced with a different story, he’s 5 now the futures unknown , how am I to know if he will ever be independent?,I can’t know yet the level of his learning difficulty so in my planning, I’m taking into consideration life long adequate care for him as Autism is life long .
i have to consider his siblings and the level of input they may want/ not want with him , it’s lovely to think they would care for him once I’m gone but I can’t expect this , I wouldn’t expect this, they will have lives of there own , families of there own , I would never want them to feel it’s expected they care for him , I’m planning on living a very long life and while I’m on this earth he will not leave my side , that’s not hard for me.
He will have a self contained extension of the house that will have a connecting door should he wish to join us ,it also allows us to ensure his safety at all times and respects his privacy also , those plans I already have passed by the council , why now ?he’s five right? Well because in my mind I need to know that’s in place for him should I all of a sudden not be here unplanned, for when he is older , I can’t expect everybody to give up there whole lives, I want everyone in my family including Oscars dad to do whatever they need to do in life, travel the world visit countries they feel they need to and have that freedom , I hope to continue Oscars love for travel but should this change I would be happy to stay back with Oscar as I do have my own life, social life and beautiful friends, and I allow for that while Oscar is in school or in bed , but the rest of the time is for him and my other children ,and I understand the rest of my life is too and that’s ok it comes with the territory of being a special needs mum all the time he needs me I will be here and even when/ if he needs independence I will never be far away , that’s the way things are
my dreaded fear is if I die before Oscar is grown , it’s a fear I have for all my children but for him it’s more fear , don’t get me wrong if his needs were met I’m pretty sure he might not even notice I’m not sure he has the emotional understanding of missing someone or any measure of time, he’s very in the moment , I just worry that he could be feeling those things but it goes unseen , it’s something I really worry about it never goes away , life is for the living I know that, I have spoken to many Autism parents and parents of children with special needs and every single one has said the same thing , it’s a deep routed fear .
I find short term planning and living in today works for me ,when I feel this way as it comes in waves , rather than looking too far ahead but knowing you do have that long term plan in place if that makes sense .
I think also it’s really healthy to be open about those fears and not carry them around with you , there isn’t a fix but it’s good to share and know others too face this and your not alone .
Its really important to make a will when you have special needs children or children in general ,and this is something I now feel ready to do , it’s going to be emotional I know but needs must
my ever full , broken heart
The national autistic society have done useful information about long term planning for Autism
