Susan Senator

October makes five years that I’ve been writing this blog.  I’ve been lazy about it lately, but many posts have simmered nonetheless.  I’ve been very caught up in trying to move forward on Nat’s future — housing, supports, day program, job.  It occurs to me that though you do have to plan the future in many cases in life, with Nat I feel that I have to move, to make, his future.  I can’t let the future unfold.

Yet, this is not a situation unique to my oldest child.  I also had to look for the path and propel my middle child, my Max, forward to his future.  We assumed, knew, imagined that he would apply to college, but, to paraphrase Mammy:  “Imaginin’ ain’t gettin.'”  Ned and I had to attend parent meetings, where the panic and energy in the room made it hard to sit still.  We took Max on trips to visit colleges, slogging across dewy quads, studying the faces of students to find — what?  Something familiar, something that felt “right.” Max was on the look out for kids with ironic tee-shirts and balaclava hats.  Posters advertising geeky get-togethers.  If there were too many clean-cut guys carrying tall blue plastic cups, too many girls in Uggs and ponytails, it was not the place for him.

It wasn’t much, but it was a start.  We didn’t know that we already knew so much:  Max eschews categorization; Max is an A student; Max thrives in the world of creativity + engineering; Max has a good head on his shoulders; Max did not want to stay in Boston.  So  Max ended up getting into the Tisch School — NYU’s art school — and so Greenwich Village will be his campus.  That seems pretty right to me.  But we still won’t know anything until he starts (this is his gap year).  He’s already making noises about how he wants to do computer stuff, not so much film…

Whatever.  None of this makes me worried.  No, I won’t be kept up at night worrying about NYU until Max is there, and then, well — ick.  But I have time.

Not so with Nat.  The sense of not much time has been pressing down on me for a long time.  Ever since we got to that IEP meeting five or seven years ago where they started making noises that we should cut some of the academic goals in favor of the pragmatic.  That was the moment when I realized that Nat’s childhood was over.  He was not going to be going to school forever.  Just like when he was three, Time swoops down and pries him out of my arms and throws him somewhere and I just have to run alongside him and make sure he’s not hurt and can still stand up and walk forward.

With Nat’s imminent adulthood, I have responded in the only way I know how:  taking wild, sweeping swings at the dense clusters of information on Post 22, gathering knowledge greedily in both arms, sucking it down, all of it, whether accurate or not.  Recently, for example, I’ve been on a rocket ship trajectory towards setting up a group home for him.  I’ve been meeting with so many other people, and canceling meetings with so many people, just trying to figure out how to put it all together.  Do I sell my house to make this happen?  Do I put my energy into getting a philanthropical organization to create a home?  Do I become a 501C3, R2D2, or whatever?  The more info I consumed, the more constipated I felt.  I felt like I was in Dante’s version of Dys, the lowest part of Hell, where the more you struggle, the more you are trapped in ice.  What I keep finding is, there is no Step 1 and then Step 2.  It all feels like you have to do 1,2,3, and 4 all at once.

Talked to a Dad yesterday, though; this guy knows everything about housing, vocational, day programming.  I’ve known him for a couple of years now and I used to feel nervous whenever I was pulled into his orbit because he knew so much and seemed almost to enjoy arranging the pieces and rearranging them to see what the puzzle could look like.  He crackles with competence. He smiles a lot. Yesterday, after a long session with him on the phone, I finally knew what I have to do next:  Figure out Nat’s days, rather than his nights.  “What does it matter if he’s living in a home you’ve created, if he’s got nothing to do all day?”  This was the question that snapped me out of my funk.

Perhaps I don’t have to work so very hard at trying to build Nat’s group home now, when I don’t even have a reliable cohort of families to work with.  I can put my energy into finding for Nat an enriching day program, one where he works as much as possible, where he can exercise, where he can be creative, cook for himself, and perhaps even go back to some of the academics he had to give up years ago.  Even if he remains in my house for a year or two — so what?  He will be gainfully occupied for most of the day.  And it won’t be forever.  Once he is established in the Day Program routine, then we can take the steps towards living somewhere else, with others, with supports.  And during that time, we will get to know more families with similar outlooks and start to cultivate each other, to form relationships that will lead towards a housing solution.

I don’t know, at least that’s where I am this weekend.