Susan's Blog

Tuesday, November 29, 2011

This is his life

The last of the leaves have settled to the ground. Every time I ride it seems I happen upon a leaf dance, where a handful of them swirl around each other, their translucent yellow skin catching bits of fiery sunlight. It feels like a good autumn — now — because I, too, have settled into my new routine — of Nat living at home — and just today I had a little time to think about things.

I was sitting on a park bench in Boston Commons, having just finished teaching my Tuesday class. I was talking to my mother on my cell, while people walked by me snapping pictures of the State House and the impossible steepness of Beacon Hill. A guy was spearing trash and the pigeons were happy in the warm air; you should see them when they’re cold and unhappy, sitting so still and close to the ground, fat and round like potatoes. I was telling Mom the news, catching up from when I last saw her at Thanksgiving — we talk frequently.

I described Nat’s days and the problems we’ve been facing, mostly of getting used to working with a staff person. This guy is a competent, capable young man whose job it is to work with Nat from around 4 until 6:30 every day. Even before we hired him, Ned and I knew that this part of Nat’s day would likely be the hardest. For years Nat has been accustomed to being productive at his school residence, but completely relaxed and on his own at home. And now, after years of this routine, his days at home are now being structured.

“We’re having a lot of trouble coming up with things for Nat to do,” I told Mom.  And, as she always does, Mom swung into problem-solving mode: “Why don’t you have him do some of the food shopping, everyday. Don’t buy all that you need when you go food shopping; leave some for him.”

This was precisely what we had started doing for him, and I began to tell her that, when a thought popped into my head: this is his life.  Then I felt a strange lightening inside, a billowy softness that I tried to understand. I said to Mom, “See, the thing is, it’s not a matter of coming up with activities to keep him busy.  Not like what we used to do [or what the school and residence did], chaining one activity after another, teaching ‘leisure skills,’ and then ‘travel skills’ and then ‘computer skills,’ or ‘social skills’ in order to keep him structured and out of trouble.” (I did not say it like that, but those were the ideas that were forming.)  Suddenly what I wanted to think about was what is it that people do with their time after work? What do I do?

Nothing. Everything. Something. Just stuff to keep going, keep living, enjoying what I can.

My discovery took wing. I had images, clips dancing around my eyes, of necessary and frivolous errands; sometimes I go to CVS knowing I need batteries or Claritin but feeling happy once I’m there because I can browse the new makeup and buy a Diet Sunkist for the drive home. Or I put a load of laundry in and then go mail some stuff.  An hour goes by, the laundry’s done, I think about what I am missing for dinner.  And then there’s catching a movie, spur of the moment, going out to dinner, walking around Jamaica Pond. These are the things Nat can do. Just the mixture of purposeful and aimless that we all deal in after work.

These thoughts came to me like the deep breath you finally catch and pull into your lungs after a strenuous hill. That’s all I have to do, I realized. I have to think of Nat’s days in a slow, unfurling way. We’ll all have to see — Nat included — what his days have in store for him, how they will arrange themselves around the fact of the staff person. I have never thought of Nat’s life this way before, like something rolling out before him, to be created–and revealed–all at the same time.


As always, lovely. Oh joy and wonder that Nat’s days will roll out before hm open and full of promise. :D. May the road rise up to meet him and you. Thank you for sharing both your lives with us.

— added by Kerima Cevik on Wednesday, November 30, 2011 at 1:56 am

Lovely, reassuring post. “Just the mixture of purposeful and aimless,” is what we wish and work toward for my son, too. The trouble is “aimless” can be so hard to achieve, oddly. And without guilt that we/he should be doing something more productive.

— added by Audra on Wednesday, November 30, 2011 at 12:49 pm

That sounds really great. But won’t the lack of structure bother him? It wouldn’t affect his behavior? My son definitely needs a mix of “wander around” time and structured activities or he’ll go bonkers, taking the rest of us with him! Maybe when he’s Nat’s age…

— added by Alisa Rock on Wednesday, November 30, 2011 at 9:45 pm

God, I love this!! I love this. Because that’s what I want my son to know: how to live his life the way he wants to live it. Allowing him to know the many, many ways of finding joy, small and large. With no purpose at all. Not aimless, so much as just … small things that bring joy.

— added by Brenda (mamabegood) on Thursday, December 1, 2011 at 1:38 pm

Good topic. Pros and cons of structured vs. unstructured leisure time. We’re thinking about something like this too: Structured socialization vs. option for less-demanding socialization option. Now deciding between Sierra Club free-form hiking on the trails vs. getting involved with Boy Scout structured program hiking, etc. I’m liking the idea of less pressure in the Sierra Club–with the option still open to connect–and Mars likes to be one of the herd where he feels connected but is not necessarily expected to perform speech as he might be if he rejoined Boy Scouts and tried to go through all those paces.

— added by Sarah on Sunday, December 4, 2011 at 11:15 am

That sounds like a good perspective! One thing i find comforting when I think about my sons’ future is that they really enjoy “leisure” time. They can be so happy listening to Sunny 99.1 (local soft rock) or going for a ride in the car or a walk through Target.

Does it work for Nat to have a couple of choices each afternoon? I didn’t know if that would be stressful or enjoyable for him, but it would be interesting to see what he chooses for himself.

— added by Alice on Monday, December 5, 2011 at 12:38 am

Loved this post, particularly this last paragraph. Thoughts to remember for down the road…

— added by kim mccafferty on Monday, December 5, 2011 at 10:58 am

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