Saturday, July 07, 2012

Oughtism Revisited

Right now, as I write this, our girl and her dad are in the living room.  She is reading aloud from a book called Barron's Painless Earth Science.  I know, I know, this is not a very summery thing to be doing on the weekend after the 4th of July.  Prepping for Regent's exams that she won't take until next June is just about no one's idea of summer fun.

But that's what we do.  That's our sort of summer fun.

Just now I can hear her reading about the phenomenon of urban heat: how the concrete and asphalt of the city absorbs more solar radiation than the surrounding countryside, and so the city gets hotter than the country.

Even so, we're not headed to the beach (too bright, too hot, sand too scratchy, waves too loud).  And we are not headed to the pool (too old for the kiddie pool we long enjoyed and the other pool is too big, too loud, too deep, with too many kids, and much, much too splashy.)

We're staying in, enjoying the miracle that is air conditioning, and reading earth science.

The other night we did not head over to the Hudson River to watch the fireworks.  In years past we were able to just hang out at the edge of the river, near our neighborhood, but last year the NYPD roped off our shoreline and forced us north. With every bump and bustle I could feel our girl's anxiety (and mine) rising until I hailed a cab to get us out of the crush of people.

This year we stayed in: we watched the fireworks on TV.  Our girl was thrilled -- she waved her American flag in front of the TV and exclaimed "Happy birth-day, America" as she reveled in the music of pop stars she knows (and that we don't).

"This," she exclaimed with unbridled joy, "is the best Fourth of July ever -- no crowds, no heat, and we can see everything!"

As Jess at Diary of a Mom writes beautifully, autism families adapt.  That's what we do.  That's how we roll.

The struggle, at least for me, still comes from the oughts, or what I long ago dubbed, the "ought-ism."

It's summer, so I feel as though we ought to go to the beach, or at least to the local pool.  It's the Fourth of July, and we live in New York City, so I feel as though we ought to go to the Macy's fireworks show on the Hudson River.  It's summer, and I feel as though she ought to go to camp, or on a cross country trip, or do something besides watching TV, playing video games, and reading the Barron's Painless Earth Science prep book.  I feel as though she's 14, she ought to have a friend by now, even if that's just one good friend.  And I feel as though I ought to be a better parent — ought to have her summer programmed for the greatest possible social, emotional, and academic growth.

And this whole litany of expectations banishes me from the magic of our lives together.

I try to shake it. I do my best to throw off what the Buddhists call the secondary suffering that takes what is and layers on top of it a set of judgments of what ought to be, of how we ought to be, about how I ought to be. Some days I get there, other days I just don't.

Oddly enough, this becomes just another in the litany of oughts: that I ought to always be present to the magic of her life.

Sometimes I'm not.  Sometimes I wish things were different.  I wish she was headed off to camp to meet up with friends who love her. I wish she were begging to go out to the swimming pool, and that she could swim well enough to make that possible. I wish we were bicycling on the Hudson River Park bike path.  I wish we were headed across the country on a big impromptu "stop where you will" road trip, or off to Paris to visit her father's cousins and see the Eiffel Tower.

And then I have to stop, and look back to the beginning of this post: "Right now, as I write this, our girl and her dad are in the living room.  She is reading aloud from a book . . .".  

She is reading.  Aloud.  From a book.

That was "the ought" that got this blog started: that she ought to learn to read, even if her her genuinely devoted teachers at the time were finding this assignment too daunting.

So what ought we go for next?  The social skills of friendship look every bit as daunting as reading once did.  And then there are the ancillary recreational skills of swimming, bike riding, volleyball or tennis.

It's a delicate balance between acceptance and advocacy, between embracing the girl we have while opening the door for the young woman she's becoming.

I'd like to say that this balance is like bike riding: that once you've done it once it comes naturally. But it seems I'm still in need of training wheels.


kristen spina said...

I love this post. There is so much here that speaks to my heart right now. Oughtism. How perfect that word is.

audball said...

This is a beautiful post and it speaks for us as well. We go through our versions of "oughtism" routinely, but as you have done, it helps to step back and see the huge amount of progress that has been made.

I find myself laughing sometimes thinking about how we have gone to the fountains near our home, where children frolic all summer and yell for ice cream and have picnic lunches. Only we have gone in the cold, cold early March evenings - right when the city turns on the fountains. We are the only ones there, freezing our tushies off, but our DD is joyous that she doesn't have to contend with crowds, heat, and noise. We make progress like other kids, just in different ways.

We just got back from three weeks away from home - traveling far from the comforts of DD's bedroom and toys. We had trying moments during our trip, but I realized that DD met many challenges and did really, really well. It's not the same experience that other "NT" girls have, but it is still a good and unique one. And while my DD doesn't have a close friend either, she is capable of making friends, which is a huge step from years ago. Someday it will happen...we do our best by giving them the tools to create a happiness that's theirs :).

MothersVox said...

Thanks Kristen and Audball -- Although I've been quiet over at the blog, we've been working on a lot of things and I want to post more. Always balancing between her privacy and my need to work things out in dialogue with the community of parents with kids on the spectrum. This summer will be interesting, I think, for the social skills piece of things. Hoping you and yours are well!

Monica said...

We were also here at home, holed up under the air conditioner, for the 4th of July. To me, it seemed like the only sensible thing to do!

And as far as fireworks are concerned, I think that the San Diego show this year should forever set the standard:

Good to hear that you're having a relaxed summer. No "oughts"!!

Jan said...

Oh, please do post more! Even though my daughter is not on the spectrum, her other issues, including tremendous anxiety (and late reading, and no friends....), make your issues and struggles feel very close to ours.

We are taking the plunge this year and sending her to a 10-day overnight camp for kids with social anxiety. Camp-stuff, but also group twice a day. We see this as prep for her someday having the courage to leave home and go to college (she's 15).

Oughtism. It's not just for people on the spectrum.

MothersVox said...

Hey Monica, So glad to hear that other fine neighbors made the same decision we'd made -- staying in and watching TV under the AC has more proponents than we knew about!

And Jan, so happy if this post is helpful to you and your family! Please let us know how the camp thing goes for you! We had so many odd experiences with camps that we basically threw in the towel. I remember how after a week of day camp (supposedly at a place for kids on the spectrum), the aide assigned to our girl asked me why she doesn't talk. I was slack jaw-ed with amazement. Couldn't even figure out how to say "Ah, because that's the nature of her ASD." Wow. An ah-duh moment. Wishing your girl a good camp stay!

Anonymous said...

I find it takes continuous work to fight the "oughts." There are so many layers. We coaxed my son to the beach last week. While his brother built sand castles, my older son drew dozens of pictures of musical instruments in the sand. I had to remind myself to be happy we're spending time together at the beach; there's no reason he has to do typical things like throw the frisbee or collect shells. So much mental work!

Jan said...

The camp went well. She got through 10 days without meltdown, without feeling the need to escape to her bed with a book. She talked with her cabin group (4 girls+2 counselors, group sessions once or twice a day) about feelings and fitting in and relating to others, and that sort of thing. She came out smiling and talking a mile a minute about what they did. (And then, of course, halfway through the 3-hour car ride home, she began to come down, and we've had a variety of reactions in the few days since.) Overall a good experience for all of us (the house was so relaxed and quiet when she was gone!)

MothersVox said...

Hey Jan! So glad camp went well for your girl! Was it a special needs camp, or a mainstream camp? I want our girl to go next year. It's just time. I see her languishing this summer and am feeling her windows of opportunity for social development slowly swinging closed. Gotta make a better plan for next summer.

ginabad said...

I like this post so much! And how is our "oughtism" focused? With a stupid amount of guilt, like how I envy your daughter reading (will that happen for either of my girls), and how I'd trade the days that I can take my girl to the beach, the fireworks, and yes, yes, the swimming, because submerged in water she feels whole. Isn't reading better? Yes, no, who knows? You've made me think and feel, thank you!

Jan said...

Do you want me to put the camp info in the comments or should I email you separately? (Of course, I don't have your email!)

MothersVox said...

Hi Jan! If you don't feel like posting it, you can email me at autismsedges [at] gmail [dot] com. I'd love to hear more about it! Thanks again!

megan said...

Great post, really love the word Oughtism.

Anonymous said...

You ought to be proud.
That's what you ought to do.

I'm glad your girl is doing better. Big social celebrations can be tough, but she will have good memories of it, and it made her happy. That's a damn fine celebration you three had, if I do say so myself (which I do).

The crazy lady who just commented on your post from 2006.