Posts by Peggy
Driving on the rims
When your kids are in college, you can learn vicariously through them, and I’m picking up all kinds of new things this summer from my daughter, Paige, who is majoring in English.
Sometimes it comes in longer talks (I had to work hard to remember why I didn’t like The Great Gatsby — sorry, Doni — and defend my opinion), but mostly we share observations, like one last night, seeing the unlikely outcome of a story and reminding each other that it was made possible through the omniscience of fiction.
Not something you get in real life, which probably explains my attraction to nonfiction. Paige took a nonfiction class and got some insight into that messy framework, (did it help that she was also taking a psychology class to meet a core requirement?) but in the end, I think she’ll be a fiction writer. That’s not fictional omniscience speaking, it’s just that her Shelfari is full of fiction and mine, not so much.
So, I shared with her a story about her dad and me that I thought would make a great scene for fiction. Maybe it could still be woven into some key moment of emotional truth in a piece of nonfiction, but the story sits in my memory as a random bit, like an old key in the junk drawer you are afraid to toss because, even though you haven’t figured out for the past 20 years what it goes to, you know as soon as you throw it away, you will.
When I packed up my things in Colorado and first moved to California, Mark came to help me drive across the desert. It was the end of summer. We had not yet figured out what we would learn a few years later, when the kids were little, that driving overnight, in shifts, is a far better way to get across the desert in the summer. But, we did drive as long into the night as we could before we stopped at a roadside park in Nevada to lay the seats back and get a few hours sleep. About 4 a.m., we were startled awake by such a noise I had never heard before, or since. The racket stopped by the time we were awake enough for our eyes to focus on a woman and two men as they slammed car doors and started stumbling around the car, yelling at each other. It could have been my stupor, but I believe it was more likely theirs, because what they were saying was completely, totally, utterly incoherent. The yelling went on for a few minutes, then, they got back in the car, slammed the doors and started up again. That’s when we saw the source of the racket. They were driving across the caliche on all four rims.
I didn’t think a car could do that. Mark was incredulous, too. But there they went, down a desert road on rims, a piece of fiction in real life.
Two things
Two amazing things happened with Sam this week. I’m sure that, to Sam, they are not amazing, they are just living and being. But for me, who knows how far he’s come, and for other parents and caregivers out there who know what minor miracles look like for a person with autism here ya go …
First, I helped Sam navigate another application for work at the Target Distribution Center in Denton. He filled it out himself, but he hit a wall when they asked for his GPA, and he realized that, as a graduate, he couldn’t access that information as readily as before. I helped him brainstorm other places he could find that information and he found it on a copy of a degree audit he’d kept. Sometimes the questions in the online application weren’t clear and I translated for him. When he was done, he told me that since I’d helped him, he needed to return the favor. He put custom ringtones on my phone, which now sounds like birds and frogs, and confuse the cat, which is fun on so many levels.
Reciprocity.
Then, Sam was out with friends having dinner at Chili’s Wednesday when he saw a game on the Ziosk on the table that he recognized as one built by the clients at nonPareil Institute, where he interned. He took a photo of the game while he was there at the table, posted it on Facebook and tagged one of the institute’s directors.
Higher-order thinking (and in a social context).
Two big, gold stars this week.
Why I trail run and you should, too
Overheard in the Wolfe House #232
Sam (yawning)
Peggy: Sounds like bedtime
Sam: Sounds like lack of oxygen
Treatment and prevention, or blue-washing?
I don’t think we, as a nation of educated people, as a country of incredible resources, as a culture, as the ostensible leader of the so-called free world, are very good at fixing problems. Many problems we had when I was a young woman are still around. Some have gotten worse.
We think we’ve made progress because we talk about our problems. Families get support in the community to raise their kids with autism, instead of quietly sending them away to an institution. Women get breast exams and mammograms instead of being embarrassed to discuss concerns with their doctor. People recycle their bottles and cans instead of sending them to the landfill.
We’re being green. We’re wearing pink. We’re lighting it up blue.We’re aware.
Good things all, but they don’t have anything to do with preventing some serious and growing problems.
The occasional greenwashing we get from some environmental groups keeps us from solving problems. The Sierra Club promoted natural gas until they were against it. Can you imagine where we would be now if they, the Natural Resources Defense Council and the Environmental Defense Fund had been more worried about an ounce of prevention from renewables than that compromise for a pound of coal-powered cure?
Then there’s the Komen problem. Many have been trying to cast a brighter light on that group’s pinkwashing for a long time. All these promotional tie-ins and three-days and commercials and messages have actually confused some people into thinking that finding breast cancer early is the same as preventing it.
Uh, no. It’s time to pay for prevention. My mother had breast cancer. Let’s see what we can do to prevent my daughter from getting it.
What of this burgeoning world of autism research and advocacy? When Sam was diagnosed, we were told that he was one in 10,000 or more. Autism was rare. I didn’t know anyone else whose child had autism. Now we’re at 1 in 88. It takes more than two hands to count all the kids with autism that grew up here in the past 15-20 years in Argyle, a town of 3,000.
Aren’t you afraid? You should be afraid. I am. You should be very afraid. Your-stomach-up-in-your-chest afraid.
People who want to help are trying. (And if you know what the day-in-the-life for families of kids with autism is like, finding time for that is its own kind of miracle.) They are raising money and advocating for more research.
When I visited the Autism Speaks website to look at the latest in research, I got kicked to pop-up page, insisting that I sign a petition about insurance before letting me land on the web page I sought.
I get that. Parents need help paying for treatment. But it was in-your-face. It was slick. It was just a little too Komen for me.
I hope it’s just because they have some really good people working for them. I hope they don’t get lost. I hope we aren’t in for a generation of blue-washing.
No amount of blue light bulbs you buy at Lowe’s is going to light this darkness.
We need prevention, and we need it now.
Overheard in the Wolfe House #231
Peggy (seeing Sam resting his head on the back of a chair after a long search for his dress shirt): There are a lot of people in the house. It’s a little chaotic.
Sam: Yes. It’s nice.
Overheard in the Wolfe House #230
Sam (after changing a rear brake light bulb and picking up a dead AA battery he found in the trunk of his car): So, can the dead grasshopper stay?
Peggy (having just picked up a petrified strawberry from said trunk): Yeah.
Overheard in the Wolfe House #229
Peggy: How was work today?
Sam: Work was subtle today.
Purple joy
Always a reporter, never a source (except maybe once)
For about six months in 1997, this tapestry lay over the table in the breakfast room at our house as we worked with two other couples and a high school student to turn it from bits of amazing fabric to the beautiful design you see here.
It is one of the five large tapestries that hangs during the Easter season at our church, St. Philip the Apostle Catholic Church in Lewisville. Three are conceived as panels in the main display, two more flank the sanctuary, and a sixth, smaller tapestry drapes over the altar.
For Easter season alone, we had to have enough volunteers to make the six tapestries. Multiply that by the many seasons of the church calendar — the bold red tapestries for Ascension and Pentecost (Sam’s favorites) hang for just two weeks — and you get the sense of what a barn-raising that was.
Mark announced in 1996 that he wanted to convert, something apparently he had been quietly thinking about for years. In the early 1990s, we’d found a good church home in Sacramento, at St. Francis, during, of all things, the time when they were retrofitting the sanctuary for earthquakes and Mass was being held in the school gym. Mark said he hadn’t known such a spiritual home when he was growing up, which always made me a little sad. I know there were times as a child I didn’t get what church was about, but there were times that I did.
The first year after Mark died, I came to help switch out the tapestries between Lent and Easter. There was a team of volunteers who did it regularly and they welcomed me. Once they knew I was part of the team that stitched it together, I got peppered with questions, as if they were historians that had just stumbled upon the best primary source ever.
They had a burning question. Was is true, that one of the Easter tapestries had a bit of a parishioner’s wedding dress on it?
Yes, I said, pointing to the tapestry that we had made.
Now, don’t get excited, dear Internet people, it wasn’t a piece of my wedding dress. Mark and I were such hipsters back in the day, I made our get-married-barefoot-on-the-beach-in-Kona clothes of a buttery linen. This tapestry is filled with bridal fabrics, but full of shiny silks and satins and sparkly lames and organzas.
Two Dominican nuns designed the work and set up all the volunteers with the patterns and fabrics needed. They included a little extra for errors.
Our team didn’t quite cut all the fabric at once, which we maybe should have, but we were also worried about losing track of some pieces. By the time we came to the very last piece, there wasn’t quite enough of the creamy white, rich brocade the sisters intended. We nearly panicked. No matter which way we turned the piece of remaining fabric and pattern, we couldn’t make it work.
Marcy, one of the volunteers, studied it closely. “It looks like my wedding dress. I bet I have enough fabric left,” she said. We were stunned when she brought the piece the next week. It was almost a dead ringer for what the sisters had given us to use.
We decided to sew it on and tell the sisters later. They thought it was a great solution, but the story still turned into church folklore. As my friend, Donna Fielder says, now that I am too old to die young, I see that’s what people do with certain stories.
Each Easter season, I get a little misty when I see this tapestry, knowing that Mark’s signature is on the back with mine and that of our friends and knowing the year the tapestry was started was the year he was welcomed into the church.