Susan Senator

So we learned yesterday that Nat has been designated a Priority One by the DDS (Dept. of Developmental Services) which means that in all likelihood, the state will fund an adult residential placement with 24/7 care.  Nat, in the macabre irony of the world of disability, is lucky that he is so severely disabled.  He will have a home and caregivers for now and especially for when we are no longer able to do it.  What will his home be?  That is still the question.  If I can get all the pieces to come together in time for his transition out of school in November, then he can live in my envisioned group home, the one I’ve been working on for nearly a year.  But if that doesn’t work, there are a few back-up options, like another group home that is just beginning in a nearby town, or one that is already up-and-running.

That is excellent news.  As the DDS Liaison put it, “He will be safe and fed.”  Basic needs met.  But the salad days of public education entitlements are ending, the days of fully-scheduled, mind developing endeavors, the era of the intricate skill-heavy IEP, finit.

But this post is not about that.  I’ve been thinking about Max these days.  My feelings with regard to Little, Little (his very first nickname, which even then was said with irony, my 100th percentile baby boy).  The other day I brought up something at dinner that we’d talked about months ago, about NYU and the Tisch School, where he’ll be going.  When I started asking him about it, he said, “I don’t want to talk about it.”

I said, “But is there something — ”

“I just don’t want to talk about it.”  His face was red, and very sharply outlined, which is how he looks when he’s mad.  I felt this mild remonstration like a fingerpoke in my belly, and my face felt hot.  Here was Max, my gentle giant, setting a boundary with me in a really direct way.  Pretty rare occurrence.

The rest of dinner I ate quietly, feeling anxious that it would happen again, that anything I said would be snapped at.  And I wouldn’t know when it would happen or why.  I felt sad.

When I woke up this morning, it all didn’t seem so bad.  Max has to do this.  He and I have a great relationship, but we are still mother and son, and so this is how a happy-well-adjusted teenage son breaks away from a loving, supportive mother.  No matter how great the relationship, it has to happen.  Max is setting the boundaries, and I have to stand behind them.

I got to thinking about how different it is with Nat.  I have to set Nat’s boundaries for him, and the way I do that is by having him not come home several weekends a month.  I am doing that to teach him independence.  I have to do it for him, because he cannot do this on his own.

I think that’s why it has been so hard for me.  It is hard enough having Max changing the rules and dynamics between us.  But with Nat, I have to do this difficult and alien thing myself.  I have to make myself do it, the way I sometimes force myself to eat broccoli.  It tastes terrible, sometimes makes me almost vomit, but it is the healthy thing to do.

He’s not here this weekend, can you tell?