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.