Things I Never Knew I Was Waiting For

I’m fond of telling my kids that their grandkids will be in awe of their childhood experiences — all of what a computer couldn’t do, how crude a smartphone was, how brutal medical practices seemed (that last idea comes courtesy of Star Trek IV The Voyage Home).

I tried to apply that perspective to all kinds of situations in raising Sam. Being aware that you are in pioneering territory is helpful. Lots of people have come before us to do the Lewis and Clark equivalent of defining the landscape of accommodating someone with a disability and laying the groundwork with the public policy that opened up this new frontier of living with a disability.

I try to remember this journey as the Wolfe family Conestoga wagon settling the autism frontier. Nearly every day something new, something without precedent. Sometimes it’s exhilarating. Sometimes the risks are clear and present. And always, always, exhausting.

The pioneering days of speech therapy are behind us. If someone in the discipline was interested in a exit interview, I have things to say about what worked and what didn’t. I would imagine Sam does, too.

Never was that more clear than when I read the following line in Diane Ackerman’s book, One Hundred Names for Love (a book about her husband’s stroke and continuing recovery from aphasia, which has some interesting similarities to Sam’s speech impairment). She describes a scene where her husband, Paul West, also an imaginative writer, struggles with fill-in-the-blank worksheets meant to help him regain his ability to talk.

“Choosing the correct answer could be as tough as herding cats. But, like most people, I did know the accepted answer. Selecting it, I had to ignore all other answers that spring to mind or were truer to my experience.”

Correct is not the same as accepted.

Furthermore, we cannot ascribe too much meaning when a client cannot come up with the accepted answer.

I tried to explain that in my book, when I relayed Sam’s experience of confronting vocabulary cards with images of things he’d never seen before. Diane absolutely knocked it out of the park, explaining the inherent social context of many speech exercises.

I think it could be a much bigger problem than those working in speech therapy might realize.

Throughout the book she describes “deliciously ambiguious words” and takes us on verbal joy rides with them. She sprinkles phrases without context and then gives us a fun house worth of perspectives to show how much we depend on context for meaning.

I wish I knew that two decades ago. I can only imagine how much better his speech therapy would have been. I wish I knew that a month ago when we were hit again with this problem.

I wish I knew these things I never knew I was waiting for.

See Sam Drive

Sam bought replacement windshield wipers today and, just like his father used to do, decided that five minutes before it was time to go to work, he should try to put them on.

Mark drove me nuts with that. “Oh, don’t go to work just yet, I need to change the oil in your car,” and I’d be standing there in my high heels and blazer and wondering why after 20 years of knowing that doesn’t work, he still did it.

For Sam, it became an all-hands-on-deck operation and Michael managed to get them on well enough that Sam got to work on time.

When he gets home, we’ll see if we can get those little guards attached. Meanwhile, I’m hoping the drought holds out for another hour.

Love Letter to Steve Jobs

In 1990, Mark and I didn’t know anything about autism. But our little boy couldn’t talk and we feared the worst.
Sam was drawn to a simple, hypercard game, “Cosmic Osmo,” that came already loaded on our first MacIntosh computer.

As he played, we saw that even though Sam couldn’t speak, he could think.

We never got to thank you while you were here, Steve Jobs. Today, I’m sure Mark got that covered.

Comfort Food (recipe for majadrah)

Tonight I made a batch of majadrah, a Lebanese lentil and rice dish that Mark and I came to crave when we were living in Sacramento.

The woman who cooked at Juliana’s Kitchen would scoop a portion on the plate with falafel and tabouli. Sam was a toddler then, and he didn’t care for the tabouli or falafel, but he ate lots of majadrah.

I would ask her for the recipe and she would always refuse. I’m not particularly good at tasting and figuring out what another cook is doing, so it took me the better part of ten years to get it down. The key, I’ve found, is caramelizing the onions, adding the cumin into the oil and letting it get fragrant before stirring in the rice and coating it with the cumin-infused oil.

Anyways, I had 2 cups of cooked lentils and I hadn’t made this in years, so out came the old recipe. And with my first bite, I was back in Juliana’s kitchen with Mark and Sam.

When Sam came home from work, I told him I made some lentils and rice and it was one of his childhood favorites. He got a big smile on his face, and then put his nose to it when I told him I started by caramelizing the onions.

“Ooooo, carmel,” he said. “I’ve got to take a shower first, but I’ll try it.”

That’s huge. Sam hasn’t eaten beans since he was 3 years old. I’ll let you know how it goes. Meanwhile, here’s the recipe.

2 cups cooked lentils
1/4 cup olive oil
2 large onions, chopped coarsely
1 tsp cumin
1 cup long grain rice (white or brown)
1 cup water
1-ish cup chicken stock
1 tsp salt
Freshly ground pepper to taste.

Caramelize the onions in the oil in a Dutch oven. This can take 25-30 minutes. Once the onions are nicely browned, add the cumin and sauté another minute. Add the rice and sauté for a minute or two to coat. Add the lentils, water and stock, cover and cook, over very low heat, without stirring, until the rice is tender. If the liquid is absorbed before the rice is tender, add more stock. Sprinkle the salt over the top when nearly all the liquid is gone and return the cover to the pot.
Taste and adjust seasonings.

Overheard in the Wolfe House #134

Sam: Uh-oh, fluorescent lights. (pauses). Mom, where are …. ?
Peggy: Yes?
Sam: I was about to ask an inappropriate question.
Peggy: An inappropriate question? Oh, you mean you were about to ask where the light bulbs are?
Sam: I was about to ask where the light bulbs are.
Peggy: And you know where the light bulbs are?
Sam: I know where the light bulbs are.

Humbled

This is just about the nicest thing a peer has ever said about me … dunno whether it was Gayle Reaves, or Jeff Prince, or Peter Gorman, or another one of those tenacious journalists over at the Fort Worth Weekly who wrote this, but I’ve got tears in my eyes.

I’ve long respected and admired their work and have been jealous at times that alt-weeklies have more ink to accomplish what needs to be said. And the Weekly knows that when it comes to the Barnett Shale, A LOT more needs to be said.

 

Buh-Bye, PFY 478

I stood in line at the tax office for a reasonable amount of time, about 15 minutes, which was made merrier because Monte Borders came in halfway through the wait. Monte lights up every room he enters.

Then, I told Sam’s sad story to the clerk, handed over his registration sticker and $7 — again, not too bad — to get him on the road again without having his license plate pop up in every police scan he drove by.

This was something Sam could have done, but I didn’t want him to miss work and I’m just down the street. I’d already planned on spending the day addressing other people’s screw-ups (this means you, Bank of America), so I was ready to make a party of it today.

I asked the clerk whether this happened very often, whether she had given anyone else new plates because their plate number was in the warrant database. She said not very often, but it wasn’t uncommon either.

And she agreed, this was the best way to fix the problem.

Sam got a new 7-digit plate. I remember when California went from six digits to seven digits on their plates.

That’s about when we left California. Too many people.

Hmm.