Susan Senator

My so-called strength is deserting me.  I hate this, I hate this.  There is no escaping my terrible sadness and fear for Nat’s future.  Yes, yes, he is luckier than some because he does get some funding.  We don’t know how much or where he’ll live or with whom or whom the staff will be but we do know he’s eligible for residential care.  But still, for residential care, there is always a catch.

Nat is between two worlds; he always has been.  Neither “high-functioning” or “low,”  it is hard to find a match for him, just as it was hard to find a school program.  There is always a fork in the road, between the upper levels who are mostly verbal and can make conversation and be left alone maybe a little or a lot, and the so-called lower levels who appear disengaged and have a lot of trouble with communication and safety. In school we had to make the choice between academic programs and pragmatics.  We had to risk regression with peers who were more challenging or we had to risk his anxiety and aggression with a more demanding curriculum and fewer support staff.

Nothing for just plain Nat.  How often I have wanted to just pull him out of the world and teach him myself.  But what kind of life would that be for either of us?  I need to be out in the world and he does, too.  He loves being around people, as long as he doesn’t have to talk to them, probably more than I do.  I can’t deny him that.

The group home project is a bit frail at the moment.  We are not at all sure we have anyone for Nat in November, when he needs it.  There is talk of bringing Nat home for a few months, with support.  But that makes me scared.  Will he become anxious with the changes and regress and aggress?  Will Ben pay the price?  Will we even be able to find adequate staff once he does have a cohort?

Why does the state set such low pay rates for caregivers?  How the fuck does that make any sense?  And if they do that, why can’t I legally supplement their salaries and pay them more?  It is a system that perpetuates low-level life styles, mostly maintenance, because the staff are disengaged.  They need to be paid better, like anyone else.  What is motivating them?  Coming to work to restrain people and clean them up?  No wonder there is so much “van therapy;” it is probably a relief to pile them into the van and get them seat-belted and deposit them at DayHab or a mall.  God damn it.

Oh, I’m sorry to anger or depress you, my dear readers.  These are my fears.  They are your fears, too.  They are the worst I can think of.  Oh no, wait, there is worse.  I could live in a country like Darfur or something.  God forbid.  This fucking world.

I know of a young man who would be a perfect match for Nat but he doesn’t have funding.  The only funding available for staff for Nat and this guy is very very low.  So to put them together means risking a disengaged caregiver.

Who can help us?  All I see is uncertainty stretching ahead for my dear son.  Sons.  Me.  Us.  Sure, yes, life is always uncertain, red in tooth and claw.  But fucking hell I have tried so hard to make things work for him and now there is so much I have to leave to chance.

plus Max is leaving on Sunday.