problem-solving
Sam, age 9, makes pudding
From kindergarten through 8th grade, Sam spent one afternoon a week in the clinic with occupational therapy students at Texas Woman’s University — usually two students would be working with him under the supervision of the professor in a clinical practicum. At the end the of the term, each student would plan a program for Sam and videotape it as their final project.
He pursued a wide range of activities in the clinic that helped him become more coordinated. By the time of this project — Sam is about 9 1/2 years old — he was on his way to following multi-step directions, interacting with people, staying on task with jobs that might otherwise make him uncomfortable.
We took cues at home from lots of these experiences. For example, Sam, Michael and Paige participated in 4H food events. It was no small victory in high school to help him build confidence using both the stove and the oven.
For entertainment value, this 11-plus-minute video is about on par with watching any home movie, but if you are looking for ideas to work with a child with autism, this is good stuff. Enjoy.
Book report, part 2: The Science of Consequences and autism
I hope the first essay about Susan Schneider’s The Science of Consequences — dealing with the ostrich effect — doesn’t turn out to be a spoiler for this one. I wasn’t reading the book for my day job, yet there were many cross-overs.
That’s always nice.
At the end of the book, Schneider shows how we might solve problems on a grand scale with consequences (global warming, overcoming prejudice) and, as I was reading that, it occurred to me that many parents of kids with autism — especially the young parents — don’t realize the power of consequences.
Ivar Lovaas had put together a program of consequences (they called it Early Intensive Behavioral Treatment) that raised the IQ of kids with autism, on average, by 20 points back in the 1980s, not long before Sam was first diagnosed. We helped bring his program to Sacramento, even though we didn’t understand it very well and Sam would never directly benefit from it.
Back then, we couldn’t see how learning to imitate, or learning to pick up a red block, or learning to talk in increasingly longer and more complex ways was going to help Sam in a substantive way. He had autism. We thought that this kind of work wasn’t a cure, it was a way to adapt. Why would any parent think that applied behavioral techniques could make substantive changes in the brain of their child with autism?
But, as I have seen and learned, they can.
Schneider doesn’t set out to show us that in the book. In fact, she doesn’t tackle autism until the final chapters and its quite a brief passage. But, by then, I understood what she was laying out — how consequences have shaped the world.
The book is a review of the scientific literature for the lay reader. Schneider helps us understand the concepts of reinforcers and the variety of behaviors they can shape, including complicated ones. She helps us understand how negative consequences aren’t always, and how positive consequences can be negative.
She shows us that genetics are affected by consequences, and almost in real time, not just through evolution. And while scientists have long known that an enriched, language-filled upbringing is best for young children, they have also determined that enrichment later in life can make up for a young life that missed out. What parent of a kid with autism wouldn’t find hope in that science?
I actually got more out of the chapter on “Thinking and Communicating” and its implications for autism, than I did on the autism section. To wit:
“Simply listening to language is clearly not enough to pick it up. Interactions — and the consequences that necessarily go with them — are critical. For example, a hearing child raised by deaf parents spent most of his time at home. The TV was kept on for him on the theory that this exposure to spoken language would suffice for his language development. By age three, he had readily learned the sign language that his parents used but could not understand or speak English. There had been no consequences for learning English, but there had been plenty for learning sign language.” (p. 151)
So, turn off the TV and create a rich environment for your child.
There are social elements in all language, and Schneider helps us see how that plays out. Requests, for example, benefit the speaker, while descriptors benefit the listener.
I know. Duh.
Bear with me.
When you are putting together a program to help a child with autism learn language, you have to be able to harness scores of facts like that, because as Schneider writes, “understanding what’s happening and why, and taking advantage of all the positive consequences available” (p. 241) is what you need to make that change. As she cautions us, “the basics seem like simple common sense but are not as easy to do as they sound.”
Just ask any parent of a kid with autism.
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.
Autism’s top ten research advances
I’m grateful that within the first year of Sam’s diagnosis a friend of my parents copied journal articles for me and showed me how to read them. Kitty told me it was important to keep up — there was a lot of research being done and we needed to transfer that knowledge in how we worked with Sam.
We learned all kinds of interesting techniques (social stories and video modeling were among the best). We also learned to watch for signs of “readiness.” Kitty showed us that speech has a pattern of development and that Sam’s speech could well be following the pattern, just at a more deliberate, rather than dizzying, pace. When Sam looked ready to learn something, we gave him a leg up and tried to stretch that bit of readiness into other skills.
Autism Speaks helps me continue to stay abreast of the latest in research. (You can subscribe to their science digest here.) There is still a lot of work to be done for the young, but Autism Speaks and others are looking at the problems of under- and unemployment for young adults, too. That topic made their top 10 list this year, and that is good news. We have a choice. If we provide people with autism the right support, they can work and contribute. Or we can do nothing and pay a much, much higher price.
Overheard in the Wolfe House #214
After the Mayan apocalypse fail …
Sam: So I had a nightmare last night. Did you?
Peggy: No. I know you were worried about that. But see … ?
Sam: Yeah. The sun came up (pauses). The thing about nightmares is you know you are having a nightmare when you are having one.
Overheard in the Wolfe House #212
Sam: I thought I couldn’t remember how to do this.
Christmas magic man.
(pauses) I guess I still got it.
The Telephone Book Lullaby
Sam had a hard time falling asleep when he was a toddler. Some nights we had to lay in the bed with him. It got so tiresome that when he finally nodded off, we’d just go to bed, too.
We had a few tapes of lullabies we’d play for the boys when they were little, and it helped on nights that Sam was less fitful and didn’t need a human teddy bear to fall asleep.
One of the tapes was of Jan DeGaetani singing Alec Wilder’s Night Songs and Lullabies. If I remember correctly, Ray Wright arranged them. We wore out a copy I made of a recording borrowed from the Rochester Public Library. If there is such a thing as local produce, there is of music, too. She was a great singer that taught at the Eastman School of Music, and Wright headed up the jazz department. Wilder had his own connections to the school. I knew that bootleg copy was a keeper and I was bummed the day it wouldn’t play anymore.
From time to time, I would call the people at Recycled Books and ask them if they had a recording of Jan DeGaetani singing Alec Wilder’s Night Songs and Lullabies. Never worked out. Earlier this year, I got on a tear again. Another artist recorded it, and I bought the CD. Reading the liner notes, I’m not sure they were even aware of the other recording. It’s lovely, but it’s not Rochester-local. I don’t know how to explain that.
Editions of that music book that I’ve seen for sale are collector’s items. Published in 1965, it was a music manuscript collection meant for children — it’s illustrated by Maurice Sendak (yes, the author of Where the Wild Things Are). I’ll bet in some families it’s an heirloom. This month, I borrowed it through interlibrary loan and started playing the lullabies and night songs on the piano.
Oh, the flood of memories. I swear music hits way more memory spots in your brain than smells and scents.
I asked Sam if he remembered any of them, and he didn’t. In a way, for him, that’s a good sign. When he was little, his memory was lists and lists, like a telephone book. He mapped out everything and it was always available — addresses, people’s birthdays, etc. But as he got older, his memory got less savant, you might say, and that’s ok.
Wilder’s book has about 50 little tunes in it, many of them completely original. As I played through them, I realized not all of them were on the original recording. One of the lullabies, if it had been, would have been Sam’s favorite as a kid — then he may have remembered it as an adult.
When I played it for him a few days ago, he followed along with the lyrics and laughed. This was a good lullaby for kids, he said.
I think all parents of kids (and not just parents of kids with autism), desperate enough for them to fall asleep that they might just start singing the phone book, would agree.
The Telephone Book Lullaby, by Alec Wilder
Ada Jones, Agnes Jones, Albert Jones, Alec Jones,
Alfred Jones, Alice Jones
Alma Jones, Alvin Jones, Andrew Jones, Anna Jones and
All the other Joneses.
For additional verses, Mr. Wilder suggests you see “Jones” in any telephone directory.
What color is your agitator?
When Sam was in elementary school, he often asked people what color their washing machine’s agitator was. You would be shocked — shocked, I tell you — how many people did not know the answer to this question.
Many times people were so loving and accommodating. If we were visiting, they would say, “Let’s go look,” and the whole crowd headed to the laundry room. Sam enjoyed that. If they didn’t know, and didn’t suggest to go look, he didn’t obsess over getting the answer. He had picked up enough social graces that he would simply move on. Often, at that point in the conversation, he would share the color of our washing machine’s agitator. For some reason, I was slightly embarrassed the first few times he shared that — even though I told myself that was not the same as sharing other details about the family laundry.
I was never quite sure of his motivations for gathering that information. I don’t remember when he stopped asking for it. I asked him about it a few nights ago and he remembered that it was something he was curious about. “I don’t remember when I lost interest,” he said. He doesn’t remember why, either.
Sam has been researching home automation systems lately. He thinks about accessibility. A person in a wheelchair can’t reach the controls, he says, and an automated system would let them operate appliances by remote control.
He’s so determined, even if it means teaching himself code, which he finds exacting — even for him.
He had been quiet about it for awhile, but I asked him about it again after this video showed up on the browser history when I came home from work.
(Other parents might have to worry about stumbling upon porn. I just get to see a washer with three speeds of spinning.)
I don’t mind him experimenting on our house. And I wonder about how to show off that quality to an employer. He’s a problem-solver.
The current color of my agitator, you ask?
White.