Overheard in the Wolfe House #27

Sam: I see you're back on Facebook.
Peggy: Yes (with a slight groan)
Sam: That's great. It brings the world right to you.

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.

I would live in your love as the sea-grasses live in the sea ...

.. I follow your soul as it leads.



Mark Wolfe, Sept. 17, 1956 ... miss you baby.

Guidepost Five

Treatment providers know that good decisions about the treatment procedures selected for your child will affect the quality of life for your child, for you and for your family.

At the top of the checklist for every parent making treatment decisions on behalf of their child is to make sure the treatment has the most constructive, and least restrictive, impact on your child's life. Make sure you are thinking long-term, with those whole-life considerations. Therapists don't always think 20 years down the road, the way we parents do.

We want the best life for our child. As a result, you should actively participate in the planning of any treatment procedure. As your child grows and becomes more aware of the services being provided, start thinking about ways that he/she can participate in the planning as well.

Ask questions about the treatment procedure. How will it be assessed? Look for ongoing measures. What will the evidence be and how will it be evaluated? Look for principled thinking and wisdom, not just the latest-greatest-newest.

Then you can be sure you are giving informed consent.

The family way

More thoughts on Guidepost Four ...

One of my worst runs as a parent came when Sam was about 12. Something about puberty turned his world upside down. In some ways, it was as if he was 3 years old again.

As in tantrums.

Over the course of several weeks, he slipped ever deeper into the habit of taking things out on his younger brother. I got between them many times to de-escalate an argument, but Sam wasn't getting the message that his brother was not a punching bag. I took stock of his rages. They were getting worse, not better. Something about it was self-reinforcing -- possibly because Michael would only throw up defensive blocks, he wouldn't fight back. Sam would "win," in other words.

I didn't want to encourage Michael to fight back. Something about that felt wrong, more for Michael than for Sam.

Even though Sam was taller than me, I knew I could get the best of him once or twice, if I needed to keep Michael safe. I would have the element of surprise, but only once or twice, then our relationship would be ruined.

As usual, I was spending too much time thinking about it, but I didn't feel like I was coming up with any decent strategies to fix the situation.

Of course, one afternoon it all came to a head, Sam was throwing a huge tantrum, with Michael as his target, and I knew, if I didn't tackle him right then, Michael would have been hurt. I dove onto my son and pinned him to the floor and yelled at him, "Stop, stop, stop it right now, or you can't live in our house anymore!"

Sam was terrified. He already had tears in his eyes from the tantrum, but now his eyes looked truly wild. It seemed to take forever for him to calm down and for me to feel like I could let him go, but he didn't really resist much either. We tried to talk a little about what I said, but it wasn't a good conversation.

Over time, I saw that he'd gotten the message that he was responsible for his behavior and he was not allowed across that line of physicality. When he got mad, he took his troubles to the porch and paced and talked to himself. The physical tantrums ended. But it cost me a fair amount of his trust for a while.

For several years, he'd occasionally ask about circumstances when someone couldn't live with the family anymore. He was looking for the rules. Were they still the same? Does he still understand them?

I tried to give him the same message each time, essentially, 'you probably don't remember how badly you were hurting Michael, so I was pretty scared when I told you that. But you're older now and you know we just don't do that in the Wolfe family.'

That little mantra "how we do it in the Wolfe family" helped ground all our children and make them feel safe through the tween and teen years. They even put items on the agenda for family meetings that way. They'd articulate a problem, and then Mark and I asked them how they were going to solve it. They often had terrific ideas and the problem stayed solved.

That's how we do it in the Wolfe family.

Guidepost Four

Decisions that keep family preservation in mind can positively affect your child's quality life.

That ethical consideration almost seems like a no-brainer until you think about families that have put everything on hold in order to help their child. That kind of self-sacrifice seems noble at first, but on closer examination shows its flaws.

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, your family's life.

Be sure to communicate your unique family values and culture to the caregivers in your life. Give them a chance to honor those and reinforce what is important to your family.

Everyone will have to learn skills to support the child, and figure out ways to include your child in family and community life, while still honoring the needs of the whole family.

As you plan for your family, short and long term goals and procedures need to think about current settings for the family and the community, as well as transition processes for future settings.

We're herd animals

Final thoughts on Guidepost Three ...

About 15 years ago, we had a little trouble with our arrangements for occupational therapy when Sam was in elementary school.

I had managed to find a clinician who knew enough about sensory integration to afford Sam weekly sessions. She was a professor at Texas Woman's University and ran the clinical program for the students. We'd go once a week and Sam's 50-minute session would be led by one of the two students in the practicum, with the professor supervising.

It was a bargain for the school district -- $20 a session -- and Sam enjoyed the time there. It was easy for me to shuttle him there after school, since I worked across town at the University of North Texas. And, most importantly, we saw progress over the months and years he was there (from about age 5-12).

Somewhere along the line the professor and the district's director of special education got crosswise with each other. The special ed director decided it was time to pull the plug on the arrangement. We had a sense there were reasons for the conflict on both sides -- reasons that were never disclosed to us, which to this day still bothers me. The director made arrangements for clinic therapy with another professional in another town, at about four times the price by the way. That was that.

We'd heard of this OT's work. Another parent raved about what her son had accomplished in her care, so we knew the director had put some careful thought into the change.

However, it was not possible for me to shuttle Sam there and back without negatively affecting my work schedule. If we allowed the school to bus him there, they would surely cut into his class time to make it happen.

Most importantly, though, we were concerned that Sam would have to learn to interact with a new person and new routine. That isn't always a bad thing. But we'd just gone through several upheavals with speech therapists and these had cost him months in progress. While he was motivated to learn to talk, OT was another matter. He was, and remains, very defensive about challenging his senses, his balance, his way of moving in time and space. We thought he would lose a year just trying to get to trust this new person.

To this day, I have to ask permission for a hug. I don't always get it.

We refused the change and insisted that the director renew the contract with TWU. The battle lines had been drawn with us, and the school superintendent, and the special ed director.

We sat down to negotiate. The special ed director never gave a compelling reason for the change. The superintendent sided with us.

This is perhaps the best example I have from our family history showing how the quality of social interactions affected decision-making. We couldn't know whether we made the right decision, given that we weren't afforded all the facts. We could only take comfort in knowing that Sam continued to flourish at TWU's OT clinic and has very few sensory integration problems as an adult.

He also enjoys a connection with the professor, who has long since retired and moved to North Carolina.

Don't underestimate the value of those social connections. At our core, we are social beings, much more like cows, horses, goats and other herd animals than the loners, like owls and eagles.

Overheard in the Wolfe House #22

Uncle Matt: How'd you fall off the horse, Sam?
Sam: I was trying to canter it.
Uncle Matt: You were trying to canter when you fell off?
Sam: Yeah. I fell off because it was a bucking horse.

Interim markers

Even more on Guidepost Three ...

Sometimes it's hard to judge the quality of social interactions. We aren't very good listeners, even when we don't bring a lot of emotional baggage into our conversations.

We make so many decisions on our child's behalf that it's critical they are the most effective and ethical that they can be. Shahla offers a couple of indicators -- interim steps, if you will -- to mark the way and ensure our social interactions are contributing positively to our decision-making:

-- Our child's progress is evident
-- Any problems are addressed directly to the source
-- There is general confidence and esprit de corp
-- High levels of interactions and proximity
-- Everyone - the child, the family, the staff - are generally happy
-- Relationships are maintained

Heather's help for parents

Thanks to Heather Barahona and Shahla A'lai-Rosales for these eight tips for meeting with professionals. While it's designed for parents, this can work for self-advocacy for adults, too.

1. Prepare
a. Thank the professional
b. State you are willing to actively participate
c. State how your prepared for the meeting

2. Check for Understanding
a. Summarize the professional's report
b. State related observations of your child
c. Ask for feedback from partner (if applicable)

3. Clarify
a. Ask questions or state you have no questions
b. Summarize professional's response

4. Highlight Points of Agreement
a. State appreciation for the meeting, etc.
b. Acknowledge appropriateness of the report
c. State specific area(s) of agreement

5. Identify Issues
a. State area(s) of disagreement using "I" statements
b. Acknowledge professionals concern for your child
c. Admit misunderstanding (if applicable)

6. Suggestion of Options
a. What are all the possible options?
b. How can you summarize them to show you understand?
c. What are advantages and disadvantages of each option?
d. What are the options from most to least preferred?
e. What is the most positive thing about your preferred option?

7. Decide on Action to Take
a. Who will deliver services?
b. What services are to be delivered?
c. Where will services be delivered?
d. When will services begin?
e. What time and day of week will services be delivered?
f. How long with the services need to be provided?
g. How will option be evaluated for effectiveness?
h. Who will evaluate the options for effectiveness?
i. When will option be evaluated for effectiveness?

8. Feedback and Acknowledgement
a. What did you like about the meeting?
B. Who will make the next contact?
c. When will the next contact be made?
d. How can the contact person be reached?

Guidepost Three

Continuing with this discussion about our ethical decision-making when it pertains to our children ... our quality of life, and our child's, depends on quality social interactions. I suppose you could sum this up in one word -- rapport

Or maybe two -- trust and rapport.

When Shahla talks about this idea of ethical social interactions with behavior professionals, she focuses, in part, on family interactions. Good professionals will recognize the child's strengths and the family's strengths and expertise. They will respect our relationship boundaries and our confidentiality. They will obtain our informed consent when we draw up treatment plans. A good plan will reflect both child and family-centered communication.

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.

One of the hardest places for parents to be effective is at a special education team meeting. Even professionals have trouble when there are conflicting demands between the school district and the team's work on behalf of our child.

One of Shahla's students, Heather Barahona, developed and tested a training program for parents to help them have better social interactions with school professionals. The next post will have Heather's eight tips for parents which grew out of that test program.

About those experts

Just a little more on Guidepost Two ...

Not all experts are created equal, by the way. We had a bad experience with a dentist about ten years ago. This dentist came very highly recommended, supposedly someone who could handle challenging cases.

We started taking Sam to the dentist as a toddler, back when we lived in California. The dentist that cared for Mark and me had a nice, chairside manner and Sam warmed to her right away. He was always very cooperative. We didn't have any trouble after we moved to Texas, either, until he turned 12 and it was time for that last set of baby teeth to fall out. Only they didn't.

For some reason, the roots didn't decay enough behind the permanent teeth and they got stuck. He had a little trouble cooperating with the pediatric dentist, who, for some reason, did not want to pull them out. She referred us to another dentist.

He examined Sam and told us he would have to be sedated in order for him to extract them. He had an anesthesiologist partner that came in on a fairly regular basis, so it could all be in the office.

The experience was still traumatic for Sam. He hated being sedated.

And when we went back to the dentist for a regular check-up, he didn't actually do anything except ask Sam to open his mouth. No cleaning, scraping, x-rays, nothing. I didn't get charged for that, but I got charged for the office visit.

And it went like that, every three months until after a year, I realized this guy had no intention of ever treating Sam while conscious. He started talking to me about making another appointment to sedate him for a cleaning.

We walked out the door and never came back.

I had to sweet talk my own dentist to take Sam on. He reluctantly agreed, and we started with a cleaning with one of the hygienists working in the office. It went off without a hitch. She went slowly and let Sam ask a lot of questions. His first few scrapings weren't with the scaler, she used the ultrasonic tool instead. Eventually, he graduated to the scraper.

We got sealants on his teeth, and he had no trouble tolerating that. He's had excellent oral hygiene. He's never needed fillings and the dentist said that since he got through his teen years without a problem, he may go the rest of his life without ever needing one.

When he was 18, we had his wisdom teeth pulled. He was a little nervous, but he was ready for the sedation. When he woke up in the oral surgeon's recovery room, he said, "Am I done? That wasn't so bad."

Yes, Sam, you're done.

Overheard in the Wolfe House #21

Sam: Mom, do you think you're too old for Billy Bob's?
Peggy: Yeah, probably.

Guidepost Two

Continuing this discussion about making the best decisions to protect quality of life for our children ...

The second guidepost is knowing that the skills and expertise of the people in our lives will have an effect on the outcomes.

Like physicians -- whose oath requires them first to do no harm -- nearly every professional has ethical guidelines. (We journalists do, too, although critics sometimes accuse us of the opposite when they don't like what we print.) 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. Check the website of the professional association -- such as the American Medical Association or the American Speech-Language-Hearing Association -- to find out more.

Similarly, you should know credentials and competencies for the professional. For example, behavior analysts, who do so much to help our children, have quite specific guidelines for helping people with autism.

(Go here to find them: www.abainternational.org/Special_Interests/AutGuidelines.pdf)

Don't ever be afraid to ask questions of the people in your child's life. Their answers will tell you a lot. The National Institutes of Health wrote a primer to help you get started.


(Go here to see that: www.nimh.nih.gov/health/publications/autism/complete-index.shtml)

Institutional review boards

Just expanding on Guidepost One a little bit ... let's say you're thinking about pursuing a new treatment for your child.

It's a reasonable thing to do.

When I was age 6 to 10, my father was in dental school. He was approached by someone doing research on interceptive orthodontic treatment. It was very new back then. My dad was worried about the proposal, and wasn't sure it was a good idea that I be an experiment subject.

These days, he said it was too bad because I was the perfect candidate. I had a little bit of crowding, and it was causing some teeth to grow in crooked. Had I had spacers put in, they probably would not have needed to pull my bicuspids to straighten my teeth when I was a teen. That practice isn't considered so smart anymore, and I know why. I had to have orthodontia again as an adult and eventually had to give up playing the euphonium because my bite kept shifting. Eventually I had to choose between chewing my food and playing.

I chose food.

Perhaps if they'd had an Institutional Review Board back then, my dad would have felt more comfortable allowing me to be a part of that experimental treatment.

IRB review and oversight is a terrific way to know whether a new treatment is being properly conducted and properly supervised. These groups, often situated at universities and medical schools, make sure the treatment experiment is scientific and ethical.

Mark and I agreed that if a university was ever studying something related to autism and we could participate, that was how we'd help Sam get access to new services and ideas. We were part of a terrific sibling study that I think went a long way to helping Sam and Michael be able to play together as boys and tolerate each other as teens.

We also had Sam in a case study, which eventually became a published paper.

One time, we thought we were participating in something bold and new and scientific, but as we got deeper into it -- auditory training it was called back then -- we realized it was bogus and we bailed.

Look for the IRB label.

Guidepost One

Among the more important things we do for our kids who have autism, or other special need, is make decisions about their treatment and education -- sometimes long after most other kids are down the road of self-determination.

As Sam has grown and matured, he's been able to make many more decisions for himself. I serve, more often than not, as a backstop. For example, he's going to a horse show next weekend with some friends. The person organizing the trip checked with me about details to make sure the plans really do work for Sam. Sam doesn't say yes to everything -- he can anticipate problems in a lot of situations. What's different for him, unlike Michael or Paige, is he doesn't always problem-solve "on the fly" as well. Fortunately, the person organizing the trip is experienced. I anticipate a good time will be had by all.

For years, Mark and I rather instinctively decided some things on Sam's behalf that we hoped would be the most appropriate and ethical thing we could choose. Call it "on the fly," if you will.

When Shahla Alai-Rosales, an applied behavior analysis professor at the University of North Texas, shared her decision-making model with me, I was so impressed. It's her area of expertise, of course. And she thinks about ABA professionals with the rubric, not parents. But all six guideposts for ethical decision-making are good for us parents, too. When we're fully conscious of the decisions we're making, we have a better chance of making them good ones.

Shahla's first guidepost is to recognize that the quality of the information you have will affect the quality of your decision. This is the most important guidepost. Assuring the quality of that information comes in three parts:

1. You have to know what resources are available to you to make a good decision. There are support networks and training options for us, no matter what age our child is. I've mentioned many of them elsewhere in this blog (search on decision-making). You need to know what your funding options are. There are government programs, and sometimes there is support for local programs. You need to know all your treatment options.

2. You have to be able to evaluate those resources to make good decisions. There is a lot of help out there that is cutting edge. Some of it is very good. Some of it is garbage. But you can ask about the evidence; and ask where the work fits in the greater body of research. Ask the treatment providers how they are going to measure their progress, and how they will make adjustments, if needed. Well-thought answers to those questions will help you determine the quality of the information.

3. Keep in mind your rights and responsibilities as a parent; and keep your child's right to happiness and a childhood in mind, too. Sometimes it's easier, when you think about your responsibilities first to see where your rights, and your child's rights, fit in. Don't forget that personal liberties and self-determination are part of a greater social fabric.

Overheard in the Wolfe House #20

Sam: You alright Paige?
Paige: Yes. Why do you ask?
Sam: You look tan.
Paige: That's because I've been out in the sun for the last three months.

Overheard in the Wolfe House #19

Sam: I think fall is here.
Peggy: Yes, I believe it is.
Sam: I turned the air conditioners off. You can sleep with the windows open now. Peace and quiet.

Overheard in the Wolfe House #18

Two inches of rain. The toad and frog songs have returned.

Music, sweet music.

Overheard in the Wolfe House #17

(as Paige enters the room, after a long talk with Sam about whether it's more drastic to un-friend or block someone on Facebook)
Peggy: Aren't you going to miss all this big-brother advice next year?
Paige: I will. I will.
Sam: I don't think so. The sound of her voice is too grown-up for me to think she's going to miss Michael and me when she goes to college next year.