Can This Bird Fly?

I think the Number One thing that has kept me up many a night is worrying about where Zachary will live when we are no longer around. I believe this started when he turned 18 and we started to line up SSI, Medicaid, and entered the world of support services post high school.  It wasn't urgent at the time, but as he hit twenty, and now we're looking at 24, it's really starting to press in on me.

At the beginning of this process I told myself that I wanted to see him settled in some situation by the time he was 25.  I wanted to know that he was in a place that was suited for him, with people who were caring and respectful and would provide a warm environment in which he would be happy and comfortable and able to function at his highest capacity.  I mean, isn't that the ideal?  Isn't that what we all want for our kids?  I want -- I need -- this peace of mind.  

Because, unlike neurotypical people, some of our guys are not able to go out in the world and achieve this on their own.  My guy wouldn't know where to start.  So my husband and I are by default the ones responsible for finding a place for our "hatchling" to land.  God willing, let it be filled with downy feathers and fluff!

Ah, but the actual nuts and bolts process has sharp sticks and stones, twists and turns, and confusing signs that have so far confounded us at every turn.  First of all, housing is in short supply.  I can not quote you the dispiriting statistics, but there are far too many disabled individuals looking for a home than there are suitable homes.  Second, the powers-that-be try to group individuals with similar ages and abilities together.  I don't want Zac to be placed in a home with 50 to 60-year-old men with schizophrenia.  I want him with guys approximately his age.  Unfortunately, this is far easier said than done.  Third, people on the waiting list (we're on the NYCares list and a county list) are given a rank -- 3 (housing not an issue at this time), 2 (actively seeking housing, but not an emergency), and 1 (have no place to go and desperately needs a home).  When an opening comes up in a house, the state agency goes through all the applicants waiting for a spot and determines who is the most suitable and the most in need.   In the 5 years we've been actively looking, we've had one suitable opening, which went to a #1 (which is rightly so - no one should be turned out on the street).  

We started out at age 18 at number 3, moved to number 2 several years ago, and here we will stay until my husband and I are too old and infirm to take care of Zac, OR we die in a firey plane crash, whichever comes first.  And that's what keeps me up nights:  WHAT IF?  I want to be able to BE here to help Zac choose his second home.  I want to KNOW that he's settled in with people who will love him and care for him, and UNDERSTAND him.  Who will treat him with respect.  I want to SEE him settled in, and KNOW (as much as these things can be known) that he'll be OK.  

Is that too much to ask?  I don't think so.  And so we will continue to hope and wait.  Wait and hope.  Perhaps we'll get lucky.  Maybe something will open up that is just right for our son.  Maybe the system will change for the better.  I would just like to rely on more than hopes and wishes.