Southern Impolite Meets a Yankee Can of Whoop-Ass

By Peggy | October 15, 2011 |

(Note to readers: This is not one of my best moments. I’m exploring events from our lives for the next book, in hopes that there are lessons and wisdom in these experiences. Or, at minimum, a good chuckle. Let’s see what happens with this one.)

At the end of Sam’s second-grade year, the kids and I went with Mark to Shreveport for a year-end concert with the Shreveport Symphony Orchestra.

It was a great opportunity for the kids to see their dad perform as the tubist in the orchestra. Most concert settings are so formal, even I had hard time behaving.

The Shreveport Symphony had always held their year-end concert in the convention center. They put out round tables and lots of kitschy decorations around the room. Some people decorated their tables, too, and of course the food and wine flowed as the symphony played a pops program.

The acoustics were horrible — there was a level of background noise in the room that I’m sure made it a real challenge for the guys on the mixing board. But a great time was always had by all.

The kids and I sat in the back with some other symphony friends at our table and at tables around us. Given how young the kids were — Sam was 8, Michael was 5 and Paige not quite 3 — I was thrilled how well they behaved. Especially Sam. He didn’t get up and run around the tables. He wiggled and fidgeted some in his seat. Sometimes he would slip down and stand up next to his chair, but at his size, he wasn’t tall enough to block the view for any one around us.

This was a huge accomplishment for him. We had worked hard during second grade to help Sam learn to stay in his seat and pay attention. He had such trouble with it at the beginning of the year that his teacher had begun to send him out to the hallway with his aide when he couldn’t sit still. While I could see her point that he was a distraction for the other kids in the class, the aide noticed that sending him out in the hallway was reinforcing the problem. She got worried. I called Kevin Callahan, a special education professor at the University of North Texas at the time. He came to observe and designed a little intervention that helped Sam teach himself to stay in his seat and pay attention. It was brilliant and it worked.

But Sam’s behavior wasn’t perfect, and even though his little brother and sister wiggled and fidgeted, too, Sam’s wiggles got the attention of one woman a table or two away. She would watch Sam. She would whisper to the people at her table. It was hard not for me to notice I was being judged, too.

I did my best to ignore the Chinese water torture of her judgment. We were making some good memories and I didn’t want to give her the power to spoil it.

After the concert ended, people began packing up their tables. Sam, Michael and Paige rushed to the stage to hug their dad and meet the other musicians. I stayed behind to pack up our things. I looked up to see the woman was approaching me.

She began to tell me what she thought was wrong with Sam.

I listened patiently for her to get to her stopping point. I told her that actually I was quite proud of my son because he has autism and his dad was performing and this was about the best he had sat still and paid attention this whole year.

Then she smiled this treacly smile and said, “Well, I am a teacher of the emotionally disturbed and in my experience …”

I lost it.

I leaned forward and yelled, “Get out of my face.”

She looked stunned. But she didn’t move.

“Get out of my face!” I yelled again.

She took a step back.

“I said, get out of my face!”

Rule of three, she finally went back to her friends.

I was ashamed of myself for losing my cool. And a little grateful that the room was full of ambient noise, enough that only the woman and her friends knew what had happened between us. Maybe another table, but that was about it. The kids and Mark never heard it.

I walked very deliberately towards the stage. I could feel the woman and her friends watching me. I told Mark what had happened and turned and pointed to the woman. He studied her. She and her friends finished packing up and left.

“Do I need to go over there and do something?” he asked.

“Nah,” I said. “I don’t think she’ll bother another autism parent again in her life.”

Posted in getting back on the horse, love, social life

Things I Never Knew I Was Waiting For

By Peggy | October 10, 2011 |

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.

Posted in early intervention, language, problem-solving

See Sam Drive

By Peggy | October 8, 2011 |

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.

Posted in driving

Love Letter to Steve Jobs

By Peggy | October 6, 2011 |

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.

Posted in language, love

Comfort Food (recipe for majadrah)

By Peggy | October 3, 2011 |

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.

Posted in health

Overheard in the Wolfe House #134

By Peggy | October 2, 2011 |

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.

Posted in What Sam says