[ I apologize for the lack of contact, I'm actually at work right now delaying my "clock-in" time, so to speak, in order to write something up - it's been a crazy, crazy couple of years ]
Initially, Alex went to a “crisis home” in Salem (I think that’s what it was called). It was okay, but they never really got a handle on his behaviors. The state shuffled him off to Creswell before he was stable in our opinion, though we couldn’t fault them really — we, his parents, never did, either. Nor did various doctors, medications, etc.
But the Creswell home is where things went downhill. It seemed like the goal was to figure out the cheapest way to keep Alex alive, as opposed to figuring out how to keep him engaged and keep his mind working.
There were quite a few staff people we really liked there, but somewhere in the hierarchy of management there were a lot of very bad decisions. They wouldn’t train staff, they wouldn’t really work at any kind of communications strategy with Alex, they would fight us on everything, even just trying to set up a daily routine.
Sending Alex to KKI was the best thing that’s happened to him, I believe. Don’t get me wrong, it was a huge ordeal, and way too far to travel for what they did for him (I’m certain if our nation weren’t completely insane, centers like KKI could exist in every state). But they created structure for him, special arm splints to prevent the majority of his injuries, and even managed to reduce his emesis rate by a fair amount. Having a set, enforced structure allowed us to get him in the care of a FAR more effective group home. They train their staff, they don’t just pull people off the street and hope for the best. They listen to our concerns, and work with us when issues arise. And most importantly, they follow Alex’s routine very well. He’s always being directly engaged by people – he isn’t allowed to just be left in his room, watching TV and vomiting on himself out of boredom. (At the time we didn’t know what would help, we just kept trying to press them to do SOMETHING with his mind. Their response was just outright lies – “that never happens, his staff are always with him”)
So to anybody with a similar situation, I’d say FIGHT. If you can’t get something like KKI, at least fight, and fight hard, to get a structure that’s required to be followed (you’ll have to talk to multiple doctors probably, but good ones are out there who will say, yes, this structured system is a good idea). Get doctor’s orders, and bring in lawyers if you have to. (Maybe later I can provide a sample of the kind of structure that works so well for Alex.)
Anyway — the point is that KKI gave Alex the structure he needed to be significantly happier and safer. And now that he’s in a place that will work with us, we managed to get them to open up a home just 10 minutes away from us. Not a day has gone by since the move that he hasn’t seen one or both of his parents.