decision-making
Saturday in Richardson
I will be talking to parents at Education Service Center Region 10 from 9 a.m. to 1 p.m. Saturday.
The meeting will be in the Mockingbird Room in the Abrams Building, 904 Abrams Road, Richardson.
I will be sharing information about Texas Parent-to-Parent and People First language for the first half of the meeting — talks that have been developed and refined by the good people at Texas Parent-to-Parent
During the second half of the meeting, we’ll discuss ethics in treatment decisions, why it’s important, and how to be successful with it. This talk was developed first by Shahla Ala’i-Rosales, a professor of behavior analysis at the University of North Texas, and an expert with years of clinical experience treating children with autism.
I’ll bring a book or two to give away.
Overheard in the Wolfe House #74
Sam: I’m getting used to the route to nonPareil.
Peggy: I knew you would.
Sam: And I know how to go to Albertsons from there.
Peggy: That’s terrific. What route do you take?
Sam: I-35.
Peggy: (Cheshire cat grin knowing that he conquered the fear of I-35)
Cutting, pasting, passing it on …
From The ARC
The Screening Room – Critics Choice
Facilitated by Charlene Comstock-Galagan
Friday – March 25, 2011
9:00 am – 11:00 am
Location: To Be Determined
Join Charlene for a thought provoking discussion and screening of the latest and greatest
visual media and their deepest messages about inclusion and the meaning of belonging in
the 21st century. March is ID/DD Awareness Month. You don’t want to miss this opportunity!
Special Education – The ARD/IEP Process
Presenter: Charlene Comstock-Galagan
Friday – March 25, 2011
12:30 pm – 4:00 pm
Tarrant County – Specific Location: To Be Determined
Determining the special education services for a child/student is done through a strategic,
step-by step planning process. A process that crumbles if the foundation is cracked, a
critical step in planning is missed or out of order, or planning takes place without thoughtful
discussions based on the individual needs of a child/student.
DON’T MISS THIS OPPORTUNITY!
Charlene will review the ARD/IEP Planning process and share tools and strategies that
have produced positive outcomes for students who have an Individualized Education Program – IEP.
· The ARD/IEP agenda
· The purpose of assessment beyond eligibility
· Integrated and measurable goals and objectives
· Modifications & accommodations (across school settings)
· Supports for or on behalf of the student
· Placement decisions using a Planning Matrix
· Prior Written Notice… and more!
Employment For ALL – 2 Sessions (Customized Employment & Discovery, The Process)
Session 1: Customized Employment, an Overview
Presenter: Michael Callahan, International Consultant on Employment & Transition
Saturday – April 2, 2011
9:00 am – Noon
Location: To Be Determined
DON’T MISS THIS OPPORTUNITY! Participants will leave inspired and empowered with information
and strategies that make employment a viable option for persons once thought to be unemployable.
Session 2: Discovery, the Process
Presenter: Michael Callahan, International Consultant on Employment & Transition
Saturday – April 2, 2011
1:00 pm – 4:00 pm
Location: To Be Determined
The Discovery Process is a strategy used as a substitute to comparison-based testing procedures
in that it utilizes already-existing information rather than information developed through formal
assessment methods. It takes into account the applicant’s entire life experiences rather than single
instances of performance.
DON’T MISS THIS OPPORTUNITY! Mr. Callahan will review steps need to complete the discovery
process. An interactive process that allows the provider to get to know the applicant and to assist
in identifying personalized preferences and conditions for employment as well as individual
contributions to be offered to employers.
Person Centered Thinking & Plan Facilitation
Presenters: Laura Buckner, M.Ed., LPC – University of Texas Austin & Jeff Garrison-Tate, M. Ed. Texas A&M University
May 9 -10, 2011 ▪ 9:00 – 4:00 │ Person Centered Thinking
May 11 – 12, 2011 ▪ 9:00 – 4:00 │ Plan Facilitation (Prerequisite – Completion of Person Centered Thinking)
Both 2 day sessions will be held at TCU – Dee Kelly Alumni & Visitors Center – Ft. Worth
2820 Stadium Drive – Ft. Worth, Texas 76109
Space is limited & registration is required!
For additional information about the sessions above, please refer to the attached fliers.
If unable to open the fliers please visit: www.arcnetc.org.
When Baby Birds Fly
Earlier this week, the boys and I drove to Plano. We checked the route to SMU in Plano.
(We did some other cool stuff, like eat a terrific lunch at Whiskey Cake Kitchen Cafe, and buy some shirting fabric to make Michael two more custom dress shirts … his mother is his secret tailor.)
But SMU in Plano is home to the place where Sam is hoping to do his internship this spring.
Some dedicated parents and professionals have started nonPareil.institute, a computer workgroup for young adults on the autism spectrum. Sam wants to volunteer as part of a practicum he needs to complete his computer technology certificate at North Central Texas College.
We’ve been taking this whole thing in baby steps. It has been extraordinarily difficult to find help in searching for an internship for him. First of all, state resources meant to help … major vacuum there.
The college isn’t quite yet set up to assist students like Sam in the search — in the past, they have had their hands full just managing and approving the opportunities students found for themselves. Hopefully, that will change as the program grows and matures at the Corinth and Flower Mound campuses.
Job fairs at nearby UNT? For UNT students only … no sharing. I suggest renegotiating boundaries there — just like they’ve done with scores of other resources college kids need to succeed.
A friend in the computer business heroically, graciously did a little bit of legwork for us, enough for us to understand that Sam couldn’t just walk into the door of a company and offer himself for a computer hardware tech internship. He would have to find out who the vendor was that provided the service and take it from there.
Holy cow. That seemed like asking someone to find out who brings the bagel cart every morning and then finding out if they’ll let him arrange the cream cheeses before the carts head out the door every morning.
I think. I don’t know. Computer tech isn’t my world. My world is “content creation.”
But, as luck and Divine Intervention would have it, someone caught a presentation by the nonPareil people at an autism conference and they passed the materials on to me. I shared with NCTC, an advisor at NCTC reached out, and finding the waters warm, on Tuesday, we drove there and walked around the building to get a vibe.
No people vibes, just driving and building vibes.
As I said, baby steps.
That was enough to get Sam pretty jazzed. He called the director and left a message. And applied for a tolltag.
That just about made me weep. I was girding myself for driving him there two times a week. But Sam says, “I can make that drive. I like this area. I could even get an apartment here.”
I reminded him that internships don’t pay, and the rent at Chez Wolfe can’t be beat. Especially at the SO NY Lofts at Tennyson and the Tollway.
Baby steps, son. Baby steps.
Wisdom matters
There’s been chatter among researchers about the benefit of wisdom in their work — the balancing of your own interests, with the interests of others, and the interests of the community (even God, or the environment).
I think it’s kind of funny that the new thing isn’t the latest, greatest technique or protocol, but this old thing called wisdom.
Now that I’m 50, of course, I understand the implications much more than when I was a desperate young mom of 27. Creativity matters still, but I’ve learned to fold other considerations when figuring out what it takes to solve a problem or make progress on a project.
Especially when it comes to supporting my kids as they launch their own lives.
I’m not talking about a “been there, done that” attitude, or excess skepticism, either, but a vigorous way of seeing things fresh, without throwing away all that you’ve learned so far. There really is no place to stand except on the shoulders of the people who’ve come before you.
What wisdom can I give Sam and his support team as he makes this transition from school-to-work? Much of that wisdom is already his, perhaps its better for me to help him see it in himself. Really, how is it different than the support Michael needs, or Paige for that matter? Except that Sam might have a little more trouble than most of us at deciphering the social codes of the “job hunt.”
I think it’s time to pick up a fresh edition of What Color is Your Parachute? and reacquaint myself with that old wisdom.
Making Good Decisions
(The short version of last month’s blog posts)
Parents make decisions about or for their children every day. But parents of kids with special needs often make decisions about their children’s treatment and education long after other kids are well down the road of self-determination. Those decisions, therefore, can have far-reaching effects on a child’s quality of life.
Parents should give some thought to how they make decisions and whether they bring hazardous attitudes or fallacious thinking to the process. With that awareness, these six guideposts can help parents make thoughtful and ethical decisions – and create the best chance for success.
Guidepost 1 – The quality of information affects your decision making
Know what resources are available to you and how to evaluate them. You have rights and responsibilities in gathering and evaluating information – exercise them, because getting the most robust information is the foundation for every other guidepost.
Guidepost 2 — People’s skills and expertise effects decisions and quality of life
If you know the ethical guidelines for the professionals in your child’s life, it helps you recognize if a treatment protocol or interaction is on the edge.
Guidepost 3 – Good decisions depend on the quality of social interactions
When the professionals speak with you, they will use accurate terms and descriptions and the intent and impact of their words will be clear and effective. We parents have responsibility to be an effective member of the entire caregiving team — and, to the best of our ability, solve problems in a positive way.
Guidepost 4 — Family preservation will affect quality life
Most of us are dealing with something that lasts a lifetime, not a few years. Decisions need to keep in mind that this is about the rest of your life, your child’s life, and your family’s life.
Guidepost 5 — Treatment procedure selection will affect quality of life
A treatment choice should have the most constructive, and least restrictive, impact on your child’s life. Make sure you are thinking long-term, with whole-life considerations. Therapists don’t always think 20 years down the road, the way we parents do.
Guidepost 6 — 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 have some measures that you can see and understand.
Resources for Parents Conference
For minimal travel, and a low cost ($10 includes lunch), to this new conference in Fort Worth, you can get a more information and help than you would at a resource fair, but without the time demands of a major, all-day, or multi-day event far away.
And in the spirit, I’d better figure out how to trim a 90-minute talk (which was already trimmed from a half-day presentation) to a half-hour …
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.
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 …