Susan Senator

I finished a really good book this morning, and then went to empty the dishwasher, when the thought strayed into my head that I don’t do much these days.  This is the kind of thought I am prone to, a vestige of my former low self-esteem.  Luckily, my new, stronger parts of my brain rose up quickly in my defense.  “What the F?  Do you know what you do with your time?”

Yes, I thought.  These days, and for the past year or so, my main occupation has been planning for Nat’s Post 22.  Every day I read something, talk to someone, meet with someone, email someone and basically move towards a complete synthesis of many streams of information.  The way I do things is through obsession.  That’s the way I love, that’s the way I work, write, exercise, and parent.  I dig in to the deepest layer, below skin, fat, and muscle; below confidence and coping, to the raw and bloody emotions around a subject and I try to feel it, see it, and know it.  Forget warts and all, I want to get to the pathology of things.  That is the only way to live.

That is the only way I can respond to all of the anxiety I have over Nat’s independent adulthood:  by fixating on the entire subject until I know it.  And I am getting there, gaining a fluency in Government Speak, where I can juggle federal programs with state agencies, rules and laws, and also how to find the catch in each kind of support offered.  I write down figures on any scrap of paper lying around — drives Ned crazy that I never get a clean sheet — and I calculate:  “If Nat qualifies for this, we will need to contribute that; if Nat can handle this level of support, we can go for that kind of living situation.”

I got so much figured out.  If I were grading me, I’d get an A- in Post -22.  So what’s the problem?  Aside from the fact that we won’t know if Nat will get state funds for even a part-time caregiver until two months before he turns 22 (yes, it’s true, at least in Massachusetts; the Department of Developmental Services gets its budget from the Legislature, which never passes a budget on time)?  The problem is that I can’t get a core group of families!

My friends who have sons around Nat’s age rarely even return my zealous, fact-filled emails.  They don’t want to deal with it.  They have full-time jobs and other pressures.  They know how to take things more slowly, to have balance in their lives.  But it drives me crazy.  I want someone to nudge, someone to compare notes with, but it has to be someone I’ve known for a while.  Someone who knows Nat and whose kid I know!  This is part of my dream:  to have Nat live with guys he knows and likes!  How great would that be?

Why won’t they sit down and plan with me?  Am I that much of a pain in the ass?

But imagine if the boys could live near us!  Not with us, near us!  A few weeks ago I found a really cute 3-4 bedroom dump of a house right nearby in a great part of my town.  Affordable-ish.  An agency could buy it and fix it up.  My town could be persuaded to provide a Project-Based Section 8 and reduce the rent, saving the rest of their SSI checks for food and part of their caregiver’s salary.  The caregiver could live in the fourth bedroom rent free to supplement.  I could see it.  It was perfect.  I imagined painting it all of Nat’s favorite colors.  I imagined big loud young men stretched out in the high-ceilinged livingroom, rejoicing every time the T went by (the D-line runs right behind the house!) (these young men love trains).  I thought of how they could go on walks with their caregiver (three young men could share one using Adult Foster Care money, if they qualify) to all Nat’s familiar haunts:  Starbucks, KuKoos Cafe, the Library, Peet’s, JP Licks, Booksmith, Panera.  It would be so easy to live there without even having to buy a car for the house because they could walk to Stop&Shop.  They could join ZipCar if they needed wheels.  They could use The Ride. Someday.  You gotta have goals.

I am so obsessed with making this happen for Nat.  This feels like the way I planned before he was born.  I read Consumer Reports to learn about the safest baby equipment.  I learned about de-leading an old house.  I read and read about what labor and delivery are like.  I joined La Leche League so that I could nurse him (I didn’t).  I wondered about cloth vs. disposable diapers.  I did not let myself think about disability or anything like that, but the worries lay inside my heart like clogged arteries waiting to close up.  So I didn’t learn about that.

This is like awaiting the birth of Baby Nat because I am full of hope!  Paradoxically, this process makes me excited.  I feel proud of understanding The System, of the helpful connections I’ve made, of the vision that I now have.  My mind is on all its cylinders.  Nat’s adulthood does not make me sad or scared (most of the time), because I have explored every dark corner of it that I can.  I am leaving very little to chance or the vicissitudes of state budgets.

Yes, yes, of course this could turn out just the way Nat’s babyhood turned out, where nothing matched up with what I had prepared for.  It was like I had studied for the wrong exam.  Autistic babyhood was not covered in any of the bestselling baby books.  I still have a little poisonous hatred for Brazelton and What to Expect the First Year.  Fuck them for not knowing Nat.

Sorry.  Anyway, I need to talk and think about Turning 22 so much that I’m writing this down today.  If I am wrong, I will deal with it, after being knocked on my ass by Nasty Reality.  This is my boy, after all!  My orange-and-yellow Nat!  If I’ve learned anything from the Incredible Horrible Wonderful Clueless First Year of Nat, it’s that as God is my witness, I’ll never be helpless again.