Disabled parenting

I’ve written a rather uncharacteristically personal piece for MPR this time, about parenting a shy kid when you stand out in the crowd:



I was at first overjoyed to finally be working on fiction again. But it has become clear that this story is so disgusting I cannot eat for hours after working on it.

Ah, the glamour of the writing life.


I do not think I am overstating when I say that I have handled having an inexplicable, wildly fluctuating, baffling and mysterious disabling disorder with a fair bit of levelheaded calm. Panache, even. Style. (My wheels and my crutches are sa-WEET.)

This is not how I’m handling my concussion. Not at all.

I wonder. Is it because this is Just One More Thing? Is it because I am a big whiny baby? Is it the constant pain? I am unaccustomed to constant pain.

It is almost funny that this small thing — this temporary thing — has left me bowled over and terrified that I will lose my job, my friendships, my vocation; whereas MS is no big deal.

Or it would be funny if I did not find myself in tears of self pity when I see bicyclists on the road. Self-pity is not a good color on me. It does not suit.


Bob* and I are reading Laura Ingalls Wilder’s These Happy Golden Years. Bob is eight. Love is icky; kissing, unspeakable.

In tonight’s chapter, Almanzo just kissed Laura and gave her a ring.

Bob handled it as best he could, hands over his ears, wincing until it was over.

Then, we both pretended to vomit into a bucket next to the bed.

*Bob’s real name is something else; for some reason he thinks the name ‘Bob’ is hilarious.


Fifth grade is a time, books like Raising Cain tell me, that boys are figuring out what it means to be boys and eventually men. They are figuring this out in a seething cesspool of social jockeying, confusion, cruelty, and thoughtlessness.

And my small-for-his-age, glasses-wearing, underweight, anxious autistic kid is swimming in it.

I remember fifth grade well. I was a smart, filthy, angry child with a mouth on her. I fought dirty and wild and only when I really meant it; one or two tiny skirmishes and a lot of big talk at least taught most of the kids to give me a wide berth, if not embrace me as a friend. I also knew very basic elementary emotional manipulation: if a kid made fun of me for clothes that smelled like AmVets, I could snap back: ‘How do you know what AmVets smells like?’ Because I knew they were ashamed of being poor. If someone told me I was ugly, I knew to make fun of his oddly protruding ears.

AJ has none of these, er, talents.

And he is different. His movements are different; his vocabulary is different; the cadence of his words is different. His reactions. All different. And proving you are part of the mass group The Same means pointing out difference. Distancing yourself from it. Joining the huddle of Same by shoving Different aside.

And on top of everything else, he’s the smallest kid in the fifth grade.

“Everything with boys is about strength,” he tells me mournfully when I pick him up from school to hear, again, that some boy has hit him with a basketball in the head, torn up his origami masterpiece, thrown him against the lockers, told him to get away and told everyone not to touch him because he has the ‘AJ touch.’ “And I’m a wimp.”

“You aren’t a wimp,” I say automatically, uselessly.

“Oh yes, I am,” he says grimly, staring out of the window as I drive him home.

He has a kind, smart, compassionate, dedicated teacher who is working hard to put a stop to it — but no one can control every single moment in the hallways, on the playground, in gym class. We are doing our best to deal with the kids, to help AJ with his social skills (because he can really be a bastard himself, sometimes), and to help him to maintain his out-of-school friendships, but there is only so much we can do.

Some parts of parenting involve taking this tiny, delicate piece of your heart, tossing it in the shark tank, and anxiously waiting to see what happens.

I really hate those parts.

Finally at peace with my hatred of Valentine’s Day

As the years go by, I feel increasingly sheepish about my utter loathing for Valentine’s Day. It seems like such a stereotypical Gen X thing to do: sneering at candy hearts and sweet sentiments and sex. Who sneers at sex? Oh, so insufferable, my loathing for this day.

But I can’t help it.

For a while, I accused myself of snobbery. Do you think you’re better than people who buy pre-fab cards with rhyming poems in them and purchase pretty, sugary things for their sweethearts, who go out to eat and try to have a romantic evening? I would ask myself. Please remember that summer you earnestly, unironically, and devoutly followed not just the first season of The Search for America’s Next Top Model but the RERUNS of it. Please think on this before you imagine you have better taste than other people. Think of the moment you turned to your spouse and said: “She’ll never win. She doesn’t want it enough. She doesn’t have modeling in her BONES.”

But then I thought more about it and realized I was not looking down at people who did this. I was cringing, imagining myself one of them. The sense of obligation. Perhaps the oppressive idea by the less romantic partner (and I’ll just put it out there that I have had not one but TWO partners, unprompted, use the phrase “you are the single least romantic person in the world” with me. The exact phrase, word for word.) that no matter what she did it would not be enough. The melancholy feeling the more romantic of the pair might have, knowing full well the reservations, the candy, the little bit of jewelry, even the card will feel thrown-together and almost insulting.

But still, I scolded myself, plenty of couples seem very happily matched, romancewise. Why do you have to cringe up into a little prickly ball of grrrrrrrrrrr whenever this day is mentioned?

I thought back on my Valentine’s Days. The oppressive sense of obligatory romance or sex the years I was coupled, sure. But mainly the gloomy wonderment over whether something was wrong with me over the years boys just weren’t interested (and my complete lack of awareness that girls might be. My bad; can’t blame Valentine’s Day for that.).

I think this is a day that makes many people feel left out or inadequate. And you know what? As a person who feels community is my lifeblood, I think I’m okay with hating a day that makes people many people feel excluded or disconnected.

So. Fuck Valentine’s Day, my excluded, disconnected brothers and sisters!

And Happy Valentine’s Day to those of you who love it. I guess.


photo(6)I have no idea what a non-autistic 10-year-old’s pockets are filled with on laundry day; here is the treasure I found last night in AJ’s pockets:

  1. Two pairs of earbuds, only one of them his
  2. Gorgeous origami paper, the back of which contained directions for making a dove
  3. Five watch batteries (?)
  4. This incredibly detailed drawing he felt so casually about that he folded it up tightly, shoved it in his pocket, and forgot about it

I would bet you seven thousand dollars that if this were a photo of the contents of someone else’s kid’s pockets I’d roll my eyes, yawn, and wonder about how much time other people seem to have.

I went to work for the first time in forever today. I lasted three and a half hours, and my eyeballs are throbbing and my skull hates me. I forgot to eat lunch. It turns out being queasy constantly makes you forget to eat lunch, a lot.

I have yoga tonight and I’m thinking of going, maybe. The yoga web sites assure me that yoga is great for post-concussion symptoms.

Other things yoga is great for:

  1. Everything
  2. that
  3. could
  4. possibly
  5. ail
  6. you.

Hmmm. That seems unbiased and dependable. I’m going!