As a parent, did you ever suddenly find out your child wasn't where you expected them to be - and you didn't know what had happened? Panic. Cold feeling in pit of stomach. If that 'child' has learning disabilities (as well as medical problems) this doesn't stop once they're old enough to go to the pub on their own.
Rang up one morning last week to make arrangements for later that week - he hadn't arrived at day care, over an hour late but had left his home. Panic. Cold sweat - he needs a nurse with him - where was he? where were they? Had there been an accident, what had happened, should we run for the car, where the hell was he?
Needless to say, all was in fact well. He had had an accident - involving his urine continence, necessitating a complete change of clothes etc.. Coupled with altered transport due to half term chaos. The nurses had in fact coped and communicated and all was well. If we hadn't rung we'd never have seen a problem.
But you do when it's your son. It's not rational, it's emotional. But it's real when you have an adult with these sort of problems. And it goes on all their life. Children grow up, and I know my 30 year old daughter will always be a little girl needing my protection in my eyes (not that she needs it really, sorry S.) but my son will. He'll never be fully grown up enough to leave on his own in case he chokes or has a bad fit, so I'll always be a worried parent.
Another parent with a far less disabled son than mine was once asked what was the best thing he could do to ensure his son got the best care possible. I thought his answer was incredibly wise - 'Stay alive as long as I can.'
This time things didn't go wrong - next time they might (shit happens - no-one's to blame). I trust his carers and nurses, but he's my son - trust can go a long way, but it will never go as far as I will. I don't apologize for this, or blame anyone - it's just part of being a parent.