OK so I have something on my mind and I cannot shake it off. Usually around this time, 10 pm when it sneaks up on me and keeps me awake. It’s really simple but it’s a question that millions of parents ask themselves everyday, it’s normal to worry about your kids futures but some of us parents have to put plans in place now, just in case.
The question is “What will happen to my autistic son when I die?” then there’s the cheery followup of “What happens if me and my husband are killed in an accident tomorrow?”
I talked about this with my Mam the other day, she was actually crying just thinking about it (may have been the thought of inheriting Things 2 & 3 for good, jury’s out on that one). “Oooo I can’t even think about it” she said.
Well fact is we have to. Alex is 20 this year is a drummer in a band and starts college in September he has his Dad and others to watch over him. Would it be fair to ask him to be guardian to his brothers if we died tomorrow? Is he capable? My honest answer is no.
My Mam came up with the solution that her and my Dad would move into my house with Alex and they would do a group effort. Bless her I know she was grasping at straws but that can’t happen. I’m 43 and exhausted, they are 70.
If we manage another 10 years I’ll be relieved that Ellis will be a young man and hopefully be able to stand on his own two feet but Reilly, Reilly will still be autistic, autistic children become autistic adults, he may still be non verbal. He may never work or live independently. There are no guarantees in life that’s for sure. What do you do here? because I really don’t know. Other parents must lie awake obsessing about this too. Whenever myself and Shane discuss I just feel sick to my stomach and get extremely anxious. I want the days back where I worried about what shoes went with my outfit and whether i’d have enough for pitta bread with chips on the way home.
We need to make a will but I don’t know what to write in it. Would I trust our government to ensure he’s cared for? absolutely not.
Reilly comes with a special skills set that not everybody has. I would love to hear other parents thoughts on this. I know i’m not alone.
Sorry it’s grim but it’s a very real, worrying issue.
The Life of Reilly 
Shouldn’t even reply after a few G&ts but this is on my mind a lot. Will we burden no. 2 with his big sis? Can she ever be independent? We’re working on an annex at the moment. Family can stay etc. But really it’s for our daughter. Current age 8. Future proofing. if we’re alive. Too much to think about. You’re not alone honey xxxx
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I’m pleased you did reply. God its unbelievable the amount of stress we are under. I honestly didn’t anticipate it xx
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Rhis keeps me awake too, We’ve discussed this and I have still to find answers. My Son is 20, unable to work, he is verbal but very socially anxious and makes himself ill if he isn’t in “his bubble”.
I have 5 boys all younger than him, one of my Sons, who’s 15, said Mum we would all make sure Sam is ok! We wouldn’t leave him on his own.
I have become ill recently and have had to face this prospect even more. Do I have any answers? No other than I couldn’t bear him do go into the Goverments hands, it just breaks me!
I found myself nodding along to your post; with that ‘yes’ I get that! I feel that! So thank you for making it feel like we’re not the only ones.
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Bless you Dawn it’s incredibly hard! I have been contacted about care away from Local Authority which the lady is going to write a piece about. Im intrigued Ill make sure I share it as soon as I have it xx
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There is supported living for Adults with Autism at Alexander Park in Newbiggin. My Brother in law who is 54 stays there we are guardians for him since our Mom died. It’s not perfect, in an ideal world he would have lived with us but we both work and have our own children, one of whom has Autism too.
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I have the same worries. I have 3 boys all on the spectrum but one with severe autism and learning difficulties. It’s a big worry what will happen in the future and I don’t have any answers either. I push it back to the back of my mind but it is a reality I have to face. I feel sick thinking about it. You’re not alone x
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This also never leaves me ,my son is 20 I am 51 , we have no one since my mum died ,my son is so vulnerable . I wish all us parents could set up a network to support our children so I would look after your kids and you would look after mine
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Reblogged this on The Life of Reilly.
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I have two babies. My oldest (2 this month) has autism and is also non verbal. I totally feel your pain. I’m 26 (my husband 39), and this also keeps me awake at night. It feels like such a heavy burden to carry sometimes but the reality is it’s such an important problem to try and solve. I have no solutions, no answers, not even any suggestions. It’s actually terrifying. Just know you’re not alone.
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Hi there
Just found your blog and Twitter post about your son not being invited to parties and have read your other posts with interest. They resonate with my wife and I as we have a son who is Autistic. We lived through many of the scenarios you write about and my wife spends many long night hours worrying about who will look after our son like she does when she’s gone.
The really positive thing is, our son is 30 and since he was 22 has lived semi- independently (something we could never have dreamed he could do when he was younger). He has wonderful people who come in daily and help him cook and clean and shop, take him out to do social activities and sort his medical needs. Social Services pay for meaningful day services and he loves putting on his uniform and working at furniture recycling. He gets housing benefits and DLA and has no money worries. When not at work or with his carers he can be alone in his cozy flat watching Star Wars, playing with Lego and his X Box.
It takes a lot of work in the background to make this run smoothly (sort of!) but it works and he likes his life. Yes its a worry who will do it when we can’t but if his brother and sister take it on, which I’m sure they will, they don’t have to actually be there 24/7. We didn’t believe it would ever be like this when our son was younger but there is support out there and our young people cn grow up to lead fulfilling independent (well semi!) lives.
Keep up the good work 😊
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Thankyou so much independence is all anyone wishes for I hope we can have that too.
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I have 3 autistic boys (one of which is quite violent and has severe learning difficulties with a mental age of 7, he’s 18) and this goes through my mind often especially as my hubby is 67 and I’m 47. Ash is so dependent on him and I fear for his future already
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This is my biggest fear. My son is nearly 15,non verbal and will probably never be able to live independently. He has two older brothers who assure me they will look after him but is that fair? I wish I had the answers. It keeps me awake at night. X
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