Posts by Peggy
Imposter syndrome
I have a friend who is wildly successful at what she does, but suffers from imposter syndrome. She’s worried someday that she’ll be found out, that everyone will see her as she sees herself: an imposter.
I frequently worry about that as a parent. Somehow, I’m certain that the world will look beyond my kid with special needs, and the fact that he’s walking and talking and working and happy — which I attribute far more to God’s loving hand than my bumbling efforts — and see me and my other children and know the truth. I am a lousy mother.
Yet, once in a while, I get a small affirmation about the decisions I make as the mother of my other two children. In today’s mail, someone in my other son’s life took a moment to say thanks and add the observation that makes every mother’s heart sing … “I respect and admire your ability to let him take the lead with his own destiny — not an easy thing to do, mom, and not something I see every day.”
There you go, Michael. I’m not the best, as moms go, but it’s sure better than a stick in the eye.
Always starting at ground level
Sam has asked me several times in the past week how he can search for a job for his coop education credit next semester. That’s all that’s left between him and graduating from North Central Texas College with a technical degree, and finding a job.
For millions of other parents, this is the part where your child flies. They’ve laid the foundation in college, made loads of connections, worked with their college placement office, gone to job fairs, sent out resumes, interviewed, and got a job. You just get to sit back and watch the beauty of that butterfly unfold.
Not for kids like Sam. The world doesn’t know what to do with his smarts and his expertise because it comes in an unusual package. He is a hard worker, congenial, reliable — just ask the folks at Albertsons where he’s been sacking groceries for the last five years.
We planted a couple of seeds early in the semester, hoping some support for his upcoming job search will take root. But I’ve traveled this road so many times before.
I know what it’s going to take. I’ve got to stop everything else I’m doing (and as the single working mom of three, running a farm, threatened by the foulest kind of industry next door, it’s pretty effin’ busy around here) and devote hours and weeks and months of energy to help him get this going.
He deserves it. I want to be able to look at myself in the mirror, but give me a minute to shake my fist at the sky first.
Overheard in the Wolfe House #26
Sam: I’m starting to think I’ll never be married.
Peggy: Oh?
Sam: I don’t think it’s in God’s plan for me to meet girls I can date.
Peggy: (stunned silence)
Overheard in the Wolfe House #25
Sam: Fall is finally here.
Peggy: Yes, it’s just beautiful weather today.
Sam: It’s Canadian.
Live, and in person
Members of the DFW Parent-to-Parent team are sharing their wisdom and information about support available through Texas Parent-to-Parent at these upcoming events
Oct. 7-9
Texas State Autism Conference
Corpus Christi
Both Julie Rahn and I speak about parenting issues
autism.esc2.net
Oct. 21
Third Annual Parent Conference
Education Service Center Region 7
1909 N. Longview Street, Kilgore
Julie Rahn speaks about parenting issues
www.esc7.net
Oct. 30
Resources For Parents Conference
Tarleton State University
Fort Worth Campus – Hickman Building
6777 Camp Bowie Boulevard
Julie Rahn and I are speaking about parenting issues … and we’ll have an info table
njoyfoundation.org
Nov. 6
Walk Now for Autism Speaks
Ballpark at Arlington
We’ll have an info table, but we’re also setting up a homemade play-doh play station for the kids …
We’re making play-doh the way Sam likes it: purple smells like grapes, red like strawberries, etc.
www.walknowforautismspeaks.org
Impulse control
The University of Toronto came out with this beautiful little study about self-talk and impulse control.
All three of my children talk to themselves, not just Sam. However, when he started — as a tweener — his impulse control really improved. He likes to pace our wrap-around porch and talk.
I think I’m going to try that self-talk thing the next time I want seconds of pie and see how it works.
Overheard in the Wolfe House #24
Peggy: So how was school today for everybody?
Sam: uh-hm (still chewing, nods head)
Paige: Fine.
(pause)
Peggy: Well, I did my part. The parent handbook says to ask every day how school was.
Sam: Then you should ask how we like our classes.
Guidepost Six
Ethical treatment decisions are readily accountable. For many providers, that means “do good and take data.” For parents, that means a good treatment program with a well-trained provider is going to to have some measures that you can see and understand.
Those measurements will be organized, and accessible — even older data. You should be able to make decisions in a timely way based on the data, too.
Here are some helpful hints from Shahla on evaluating accountability, with my lay-person translation, to help you know what to look for:
1. Operationally defined, observable responses.
Let’s say you want to increase positive interactions between your child with autism and a sibling. There has to be a clear list of what’s going to be defined as a positive interaction. In some families, for example, roughhousing could be a positive interaction. Make sure you know what is going to be tagged and how it will be counted.
2. Reliable observation systems.
Researchers have actually studied how observation is done, in other words, asking the question, “is this what I would have seen if I had been there?” The best example I know of this is the claim that discrete trial training “recovered” children from their autism. Shahla told me once that she had seen video of the people who had gone through the discrete trial training with Lovaas and she could see the autism was still there. In other words, whatever they measured was a recovered skill, not a recovered person. Each person using the measurement system should be measuring in about the same way.
3. Muti-level observation systems.
Observation tools should handle both comprehensiveness and detail. Is there a tool that is evaluating the organization of the program? Is there a tool evaluating the activities? How about the interaction? For behavior analysts, video has proven to be valuable. For parents, that opportunity helps you see more objectively.
4. Social validity systems.
Look for a measurement system that lets you know whether your child is happy with the efforts and the effects. And maybe you, too.
5. Treatment fidelity systems.
Is someone measuring whether the treatment is being delivered in the manner it was meant to be delivered? There are always practical challenges in delivering a treatment. Measuring systems can ensure those challenges are being addressed.
Life, richly lived
More thoughts on Guidepost Five …
Catherine Maurice’s legendary tome, Let Me Hear Your Voice, hit the bookstores not long after Sam was diagnosed. Her book brought to life the groundbreaking research that discrete trials, a special kind of teaching by applied behavior analysts, helped kids with autism learn.
The only problem was, to “replicate” it at home, you had to have someone working with your child 40 hours a week on tasks like “give me the red block.”
I still roll my eyes at that possibility. Mark and I didn’t have that kind of money, first of all. And if we did, there was no one with the proper training to hire. It was still too new. And, most importantly to us, subjecting Sam to 40 hours a week of discrete trial training felt tantamount to abuse.
I’d read Kaufman’s book, “Son Rise,” too. They locked themselves in the bathroom with their child to effect the same sort of thing at home. We’d recognized there was ethical boundary in a treatment choice, just considering the way both those families tried to deliver what was known to be effective.
I fell into Maria Montessori’s method and decided we could approximate the 40-hour-a-week thing by changing our home to be like a Montessori school. Then, we spent every minute that we could with him as he played. In other words, naturalistic teaching. LOTS of naturalistic teaching.
I never logged the hours. But when he started kindergarten, I suddenly didn’t know what to do with myself with all these long, free blocks of time. In the end, it was probably more than 40 hours a week, but not one as a discrete trials.
Absolutely, the treatment choice affects your quality of life …
Overheard in the Wolfe House #23
(actually overheard at the football game)
Sam: Don’t eat that!
Connor Bateman: I’ve eaten a bug before.
Sam: I bet you barfed it right back up. (pauses) And don’t make me say that word again.