Pay it forward awards

From Texas Parent to Parent:

The TxP2P Paying It Forward Awards recognize the best in Family Support for families of children with disabilities, chronic illness or special health care needs. There are two categories: Parent Support Category (support provided by another parent or family member of a child with a disability) and Family Support Category (support provided from professional, service provider or anyone other than another parent). The winning stories will receive a trophy and free registrations to the TxP2P Annual Parent Conference for the winner and the parent who nominated them. First and second runners-up will receive a gift card.

So, what do you need to do?
  • Write a one-page story about Family Support and include a photograph of your family or child (500 words or less)
  • Complete Nomination Form* or attach information onto your story or email
  • Mail or email your entry no later than April 1st, 2013
  • You will hear from us if your story is a finalist by April 15th and it will be posted on the website for on-line voting that will begin April 22nd
  • We will contact you by June 6th if you are one of the two winners or runners-up
  • We will announce the winners at the conference on Friday July 26th.
TxP2P will use these stories after the award contest as family stories for grants, fundraising and raising the awareness of the importance of family support for our families.

You can submit your nomination online.

 

“My spaghetti”

I cannot think of a recipe I prepare more inconsistently than a pot of spaghetti, yet it is the comfort food of choice when Michael and Paige come home. The recipe is so simple that when Sam and I want spaghetti, he’s in charge of cooking that night.

Prepare a 1 lb package — unless you have a 12 oz package or a 20 oz package — of whole wheat spaghetti or linguine to the directions on the box. Meanwhile, brown a pound of Italian sausage (turkey, pork, no brand preference, but often buy Owens). Pour off any excess grease before adding a jar of spaghetti sauce (we have no brand preference and often buy whatever is on sale — when Emeril’s Vodka sauce was being discontinued, we ate like kings) and heat until its bubbling. At this point, I have been known to add the last of a leftover can of tomatoes or half a zucchini chopped really fine. You get the drift. Drain the noodles and stir them in. Serve with lots of grated parmesan on top.

Somehow it turns out the same every time.

Book Report, Part 1: the spectrum of the ostrich effect and Promised Land

Most days my writing life feels split, by day reporting on local government affairs — which means lots of time on shale energy impacts here at Barnett Shale ground zero and the new adventures in hydraulic fracturing — and by night, pondering the richness of family life when it is touched by developmental disability.

But sometimes the two writing worlds collide in unexpected ways.

Currently, I’m reading Susan Schneider’s new book, The Science of Consequences: how they affect genes, change the brain and impact our world.

The book is a marvelous literature review for the lay reader. Everything, and I do mean everything, you want to know about the principles of learning from consequences seems to be in this book. Learning from consequences — applied behavior analysis — is huge in the autism world. I do plan on another post that will delve into that later. But for now, I’m enjoying the ride, getting my mind blown at least once per chapter; for example, in “The Dark Side of Consequences,” learning that positive consequences can be negative and negative consequences really aren’t.

Oh, snap!

So, I’m up to page 129, deep in the chapter “Observing and Attending,” and Schneider elegantly lays out the “ostrich effect.” As in, the opposite of what the former mayor of Dish, Calvin Tillman, has offered as a personal tagline: “once you know, you can’t not know.” Or, as in Promised Land, that electrifying moment when someone or something jerks your pretty little head out of the sand and your old wise heart starts pounding, knowing, readying, because what you choose next absolutely defines who you are.

Schneider highlights a whole body of behavioral research that shows people often prefer to look the other way rather than confront bad news. She writes, “We could hope that we humans would be wiser and more willing to take the potential disappointments of observing when it’s in our own best interest.” (p. 129)

But we don’t.

(We learned that lesson early in the Wolfe house. We let people, including “experts,” tell us Sam would “grow out of it” and for two years, and life got worse and worse. After we named the disability and tackled its issues one by one, the whole family’s quality of life got better each day.)

The first study Schneider puts out for the reader is Brock and Balloun’s 1967 classic “Behavioral receptivity to dissonant information.” The participants were asked to listen to a series of messages that were covered up by static, but they had to power to clear the static for three seconds by pressing a button. Researchers let the participants know the message topics and their order. The purpose was to see when they would clear the static and listen in. Smokers listened 35 percent less to a more accurate, but discouraging, message about the link between smoking and lung cancer than another message, which discounted the link. Nonsmokers listened in to both messages.

Bam.

Then, Schneider tells us about a Swedish study of investors and when they looked at their investment portfolios. Of course, they check more often during rising markets, something Vanguard reports, too.

Bam.

With that foundation set, Schneider moves us on to high-stakes, ever-more disturbing human behavior, such as the resistance of prosecutors — hey, jobs and self-image on the line here — when confronted with DNA evidence of a wrongful conviction (see Mistakes Were Made (but Not By Me). To date, some states won’t compensate the wrongly convicted, or even expunge records.

Or the resistance to get an HIV test, even though it is easy and inexpensive, even at the risk of infecting others. “Like cigarette smokers, they are rolling the dice, not wanting to observe and learn the truth,” Schneider writes. (p. 130)

Bam.

Of course, the logical conclusion of this section ends thusly:

“Historians still debate whether Albert Speer, Hitler’s minister of war production, knew about Hitler’s ‘final solution’ for the Jews. Whatever the case, Speer said later that ‘If I didn’t see it, then it was because I didn’t want to see it,’ and he alone at the Nuremburg trials accepted responsibility for the war crimes of the Nazi regime.” (p. 130-1)

Let that sink in for a minute — that full spectrum of the ostrich effect and what it means to humanity.

That’s why that supposedly implausible plot twist in Promised Land, as a storytelling device, has no cognitive dissonance for me. Too many years with boots on the ground in the Barnett, watching the ostrich effect over and over and over again.

But the storytellers in Promised Land still managed to break my heart in the final scene.  Landman Sue Thomason (Frances McDormand) comes to the grocery counter to pay for  pack of Trident and the store owner just gives it to her.

 

Overheard in the Wolfe House #218

Sam (after a frustrating encounter with the hardware of a mounting plate for a dual-sensor smoke detector): I didn’t know the anchors wouldn’t go into the wood. They just turned and turned and made big holes in the wall.

Peggy: Don’t feel bad. Some things you don’t learn until you get the experience. When your dad and I were young parents, we’d call Grandma and Grandpa all the time to ask how to do something.

Sam: Yeah, when you don’t know how, Grandpa knows.

Another social story

I don’t know about you, but I hated the fire alarms and fire drills when I was a kid. These days, the alarms are even louder and more grating. We weren’t going to get Sam through elementary school if he didn’t trust the adults to give him some hint of when the next fire drill would be.

Still, we wrote a social story to help him out. Below is another social story that Sam smiled when re-reading and remembering.

When Paige learned the topic, she told Sam that fire alarms in a college dorm in the middle of winter night in Iowa — because there was really a fire — are more hair-raising than the practice ones when we were all little kids. I agree. We got sent out into the snowbanks at 2 a.m. one January night in Rochester when I was in grad school. Not only scary, but widow-maker cold.

When the Fire Alarm Goes Off

Sometimes as I sit in a class I hear a buzzing alarm go off. The alarm means we are having a fire drill. 

A fire drill gives students a chance to practice for a real fire. Usually there is not really a fire. 

My teacher waits for me to line up with my class at the door. I walk quietly down the hall with my class. 

I walk outside and wait until my teacher says that we can go back inside. 

The fire drill is over when my teacher leads us back inside. 

 

 

Social stories and the Argyle trains

Paige and I were on the hunt for some drawings she did as a child and stumbled upon loads of other fun stuff. I saved a lot of the kids’ work from elementary school. I tried to limit it to their journals and things they created in art class and it still ended up filling several large boxes that either sit on the top shelf of my closet or slide under the bed.

I also saved some of the things that meant a lot to Sam in those years — for example, his social stories.

We were fortunate that social stories came out when Sam was in primary school. We bought a whole binder full of them and wrote some of our own. We made them into little books and covered them with construction paper. Some of them have stickers on them. It meant something back then, but I don’t remember what. I think it’s a hoot, though, that many of them are a cartoon of a head of broccoli running with a fork and knife  from Albertsons, since that’s where he works now.

When family or friends would ask what a social story did, I told them that Sam had trouble picking up social cues. But if we detailed them in a story, he knew to watch for them and then he would know what to do next.

From a stack of about 20 that I’d saved, Sam pulled out this one about the trains first. Like many small Texas towns, Argyle grew up around what is now the BNSF line. When we first moved here from California, we moved to a small house by the train tracks. Sam was five then. And while I don’t remember this very well, he must have been easily distracted by the trains and it was becoming a problem from him attending to important tasks.

Sam said he remembered the stories. And, oh, the smile on his face went from ear to ear as he read it aloud.

“About the Trains” 

We live at the chicken house. Trains go by our house all day and all night. 

I like to watch the trains. First, I can hear the train rumbling in the distance. As the train nears, I can hear its whistle blow. 

Then the red warning lights come on. The engines go by. I can count the engines. The cars come next. I like to see the different kinds of cars. 

When the train is through the crossing, the red lights go off and the crossing arms go up. 

Sometimes I’m too busy to watch the train. I have other things to do. That’s ok. I can always watch the next train go by.