Would not trade him IF I could. That kid (14yrs now), we happlily take him everywhere with pride. I can go into a local store and the clerks will say "Hey N....", then give him something. The whole town loves him, he's a ham.
I do understand other parents who have, or feel they must put them away, I will not judge them.
Our next concern is where will he live in the future. He will of course learn to tend to his own needs, and will be busy looking at some kind of facility with apts., and they will give them work. Rest assurd will be very careful with that. Frankly I don't trust anyone to care for him as we do.
He has an older brother, that knows he will be responsible for him, and that is hard for me, as his brother deserves a life himself. Mother and Dad are going to finally need some time for themselves.
It has been on my mind, that perhaps he could come live with me, as I age (or digress in age), perhaps one day we will meet ages, rofl. Not sure if that would work out.
Not sure either of how long a life he may have, as his heart has a leak. Heart defect at birth, so he may only live to be around 40/50.
So nice speaking with you on this.
As I say it’s been a while, but FWIW in New York the county and state both had versions of assisted living/work facilities and of course there are private ones that can be an option if insurances/family finances can swing it. There are a number of options really.
Remember Rule 1. State/County facilities are run and often staffed by/with government liberals with -—EVERYTHING-— that it implies. But the most important thing I can POSSIBLY stress is to get the records of any facility you consider. Specifically, their policies regarding staffing and background checks. I just cannot emphasize this enough.
You will most likely encounter ‘abuse’ allegations at any facility you screen. It’s the nature of the beast. The opposite of parents who throw away their disabled kids are the parents who DO pay attention but think that every instance of a cut, bruise etc is a global conspiracy to violate their child. You really gotta read between the lines on a lot of those. That said, Bad things happen and sometimes seriously so. It’s a hell of a task to differentiate between the two based on the paperwork alone. And then there’s state/fed regs that demand every stubbed toe get a CAT scan and every scratch an investigation. Sometimes you just have to follow the gut instinct. If a facility has a string of similar episodes with different ‘clients’...well, smoke/fire and all that.
All in all, If you/family can find a way to generally keep him home and do an ‘outpaitent’ kinda thing with socialization/work in a supervised facility, that’s the way to go IMO FWIW. Barring that, bring him home on weekends religiously and weekdays randomly. Involved family with ‘rational expectations’ (and I cannot possibly stress that ‘rational’ part enough) make for happy and ‘attentive’ caregiver staff, happy and properly supervised ‘children’ (of any age) and fewer ‘problems’ of the unwanted variety.