Restraints destroy relationships
To help promote the new book, I’ve been pitching op-ed pieces to newspapers. It’s interesting to be on the other side of the pitch. It also makes me miss Mike Trimble, my old friend who was the Denton Record-Chronicle‘s prize-winning opinion page editor, even more. I just miss him too much to imagine what he would say about my writing, but I try. After a few missed pitches, I asked more writing friends for feedback and that seemed to make a difference. The San Antonio Express-News recently published this piece on “restraints” which could see reforms from the Texas Legislature this year.
I think Mike would agree that the word “restraint” is a horrible euphemism for the things that Texas school and institutional personnel can do to a person with a disability in crisis, or simply to make them more easy to manage. Actions that, if a parent took them, would likely trigger an abuse investigation.
I was a little disappointed that the San Antonio editors cut so much of my original text, including the key phrase, ‘restraints destroy relationships.’ I guess it’s too scary.
Here is the full text:
When a parent first learns their child has autism, you can almost see the worry lines etch their face in real time. Their road ahead has changed. They need a new map. They will also need an experienced guide or two.
And those worry lines will deepen fast if they live in Texas, where school officials can still restrain children in ways that parents cannot, where there are caps on insurance coverage, and where the waiting list for adult services lasts for decades.
As with anyone, an autism family can thrive depending on how well the community responds.
A few generations ago, doctors told parents to send their child with autism to an institution and never look back. Today we know that autistic children can learn. New scientific knowledge and therapeutic practices are helping children learn to eat, talk, use the toilet, and master other life-changing skills. In addition, the first generations of children who benefitted from that new knowledge and practice are adults now. Some say that the early intervention changed the possibilities for their life—doing meaningful work, raising their own families, participating in community life. That was certainly the case for our family.
Other autistic adults say that their individual treatment program was abusive and traumatic. We are learning that some practices can be harmful, particularly those that focus on getting a child to comply with social ideals. This nature-and-nurture debate can be confusing for families new to the diagnosis. Parents want to raise their child as best they can, and for many autism families, the responsibilities don’t end in adulthood. Our society has built-in expectations and vulnerabilities that can create more frustration than support. The way each of us responds to an autistic individual can hinder the possibilities for their life—no different from the effects of buildings without ramps, movies without captions, or busy intersections without audio cues. It’s on us, as a society, to recognize that autism comes with its own gifts and strengths, and to respond accordingly.
How can we do that? It turns out that the basic principles for creating a healthy community still apply: by learning, connecting and loving.
Learning is fundamental to raising any child, but takes on special meaning for everyone involved in an autistic child’s life. Our learning begins not just with understanding each child but also understanding the science of learning itself—something our society often does poorly. Science tends to be a slow, deliberative process. Science doesn’t offer fixed answers to problems, in part because change and experimentation are fundamental to science. The same is true for human thriving, especially for children. We all need room to grow, change and develop.
Connecting to one another can make a difference, too. We connect when we respond to one another in meaningful ways and make sure that everyone, including each child, has agreed to whatever work we are doing together. This also means we have a duty to watch for poor conditions and change them. For example, Texas must change the conditions—and the laws—that allow preschoolers with autism to be strapped to chairs for their school day or a young autistic child in crisis to be placed in handcuffs. Research tells us that we don’t need to restrain children for them to learn. Moreover, the way we connect and respond to children, especially vulnerable children, has profound meaning. Restraints destroy relationships.
With love as their superpower, parents can meet their responsibilities to their children, even when those responsibilities are formidable. We can create the same animating force in a healthy society when we champion every child’s agency and ways to include them in the entire community. When we step up to serve as collaborators, scouts or vanguards for the families around us, we help our entire community make progress.
We humans need both science and inspiration to create the possibilities for our long-term well-being. When we all keep learning, connecting, and loving, we can build a sturdy, sustainable community filled with places and paths for every member of our community, no matter their gifts and strengths.
It’s New Year’s resolution time!
For the past five years, I’ve tried to make resolutions that are more meaningful. Whether it was saying “no” to buying things or “yes” to new challenges, or remembering that a solution already exists, those kind of resolutions brought more options and opportunities with them.
This year, for some reason, I had a hard time finding a new and meaningful pledge. To help, I read one story that suggested using a motivational word, like “breathe” or “focus” or “gratitude.” I liked the spirit of that suggestion, but wondered if a single word mantra could fall short of being meaningful.
Then, a couple things happened.
First, lightning struck a tree out front.
We were home when it happened, but we were in the back. We thought the lightning had struck a nearby transformer. We didn’t see the ball of fire that our neighbor did.
Still, we’d noticed that we’d lost our internet connection and the stereo was off. After our neighbor knocked on the front door, we saw the tree. At that point, we realized that we had a rolling disaster on our hands.
Sam spent hours troubleshooting. We brainstormed until we isolated all the things we had to fix, developed a working theory of what happened so we knew what else might be at risk, and decided what electric items were probably ok.
Based on the damage to the internet routers, we were a little scared until we could rule out a slow burn in the attic. We were grateful that–thanks to last year’s resolution to be prepared and resilient–most electrics had surge protection and had survived the strike, as did the surge protectors themselves.
Second, we took Sam’s Chevy Bolt on a long trip for the first time last weekend, from Denton to Austin and back. This was the first time to feel what EV owners call “range anxiety.” We discovered that the car’s information system was perfectly capable of predicting how many miles were left on the batteries. But we did worry whether the charging stations, which are few and far between, would be available and operational.
The trip went fine. The charging cost less than $8 on the way down, and was free on the way back. We had lunch during one charge and the fellow at the deli counter had SO many questions. Clearly, he was wondering whether driving an EV was an option for him. We answered all that we could but we were still learning, too, to which the deli guy summed, with so much wisdom, “It’s new.”
That’s was kind of an “aha” moment. We can’t always choose the moments that the world wants to teach something, and it does little good to close the door to those learning opportunities. I get grumpy solving problems that I’ve solved before; life is hard enough as it is. I don’t want to think about how appliances work. Yet, there was real power in learning how everything in our house worked. Driving to Austin is hard. Why make it harder by driving an EV? Yet, the car was quiet and a dream to drive. The charging breaks made the trip longer, but far less exhausting.
Hey, 2023. We will keep learning wherever the opportunity knocks.
Random thoughts on the 7th running of the Denton Turkey Trot
Four years may have gone by, but the climbs make old memories rush out front. Denton is not flat. Run uphill from Quakertown Park to Texas Woman’s University to hear a volunteer tell you “it’s all downhill from here.”
But you tell the kids running alongside, who are wondering aloud, are there are more hills? yes, yes there are. There’s another short climb in Pioneer Woman Circle and a big climb up to and around the Square at the end.
And you tell your inner voice that it’s not the Horsetooth Half, so quit complaining and keep running.
It’s a misty, rainy morning and some people wear gear and some don’t. If we were in the Keys, I wouldn’t wear gear. I don’t know how to make that decision. Except to shed mine after the first climb because it’s warm and it stopped raining.
People run together. People pass each other. People watch and cheer for friends and family at the finish line. People mix and mingle around the tent with the bananas, mandarins, granola bars and bottles of Ozarka, taking pictures and waiting for race results. Maybe we are starting to figure out how to commune with each other again. This is my first race since the pandemic. I feel as if I’m still watching through the glass. But I’ll sign up for another race soon to help that feeling pass.
And there’s Sam, crossing the finish line. He’s not a runner, so he walked the trot. But last week, he and his brother rode 30 miles in the Denton Turkey Roll. They’re communing too.
Suggested questions to read and discuss Between Now and Dreams
Shahla has developed book club questions for professionals who are reading Responsible and Responsive Parenting in Autism: Between Now and Dreams
I developed a set for families. As a downloaded PDF here, RRPA Book Club Family Questions, or as below
- How do the authors view autism? Did this view help you see your child’s journey in a new way? Describe.
- The authors state that the advances in autism, “… bring a paradox of clarity and confusion”. What advances have you found confusing? What advances brought clarity? Did you feel the same way about those advances after you read the book? Why or why not?
- Did you find the descriptions of scientific learning and of applied behavior analysis helpful? The authors describe applied behavior analysis as a “science of love and change.” Do you think this is the case? Why or why not?
- Have you ever found unexpected wisdom the way the authors describe — where you have learned a general lesson that applies to your parenting? What is the power in learning this way?
- Why is sustainability important in autism treatment? Does that shift your long-term perspective about your child’s services?
- Give examples of some of the potentially hazardous and halcyon attitudes you’ve seen in the people who work with your child. Give examples of some of your own.
- Imitation is a concept discussed throughout the book. What are the relationships between imitation and reciprocity? How does this translate to sustainability?
- In the context of fostering resilience, the authors talk about “bumper guards”. What are some of the reasons and ways that we introduce and remove bumpers into our child’s life? When are we most and least likely to do this?
- Scouting is presented as important in nurturing a child over time. Have you ever scouted for your child? How were the activities similar or different to those described in the book?
- Did you think of your child’s autism as being the worst thing that has happened to your family? Has the book changed that perspective?
- The authors describe love’s dark side as feelings that flag poor conditions? What poor conditions did anger, shame, or disgust flag for you?
- How have you made meaning in your family? How has that helped love grow in your family?
- On the final pages, the authors describe the need for both science and inspiration? Do you agree? Why or why not?
See Sam Drive, EV edition
We had to get up early today to meet the man delivering Sam’s new car. He bought a 2018 Chevy Bolt from the Fort Collins, Colo., dealer where my brother-in-law works. Sam was so very patient. When his uncle mentioned they had two Bolts on the lot waiting for their recall work, Sam put $500 down. That was back in December 2021.
Sam has been driving a 2001 Toyota Corolla since he first learned to drive 15 years ago. He also bought that car from his Uncle Matt. We started talking about replacing the Corolla around 2018-19, but Sam moves slowly with these kinds of decisions. He went to the auto show at the State Fair with his brother and sat in a Chevy Bolt. He tentatively decided he would replace his car in 2020. Then the pandemic came and life slowed down so much. It bought him a lot more time to shop for a car, which was good, because Chevy needed time, too, to make those battery repairs.
He didn’t need much coaching through all of this, at least not from me. Matt may have had to work a little harder to make the sale and delivery, I certainly can’t speak for him. The only thing I really weighed in on was getting the car back to Texas. We talked about flying up to get the car and driving back, but once we crunched the numbers, shipping won out. He agreed to do it, since it was cheaper by about a factor of 10.
He still has a bit of a to-do list — insurance, Texas plates, toll tag, etc. I did write that up and put it on the fridge for him, so I suppose that’s coaching. And he’s going to reach out to other EV drivers for wisdom, since this car is several generations more sophisticated than either of the vehicles we currently drive.
Life really is so flipping complicated. I have little idea how I got through things the first time myself, although I do remember a habit in my 20s of calling my parents often and asking adulting questions. I do also prompt my other kids–probably more than they would like–with the preface of ‘let me tell you something I learned the hard way and save you some time/money/heartache.”
Have you ever thought about all the problems you solved in your 20s?
A rose behind a geofence is just a rose, fenced
The word geofence joined the English language in the mid-1990s. As I type the word “geofence”, Microsoft Word doesn’t correct my spelling—yet, chances are high that if I want to talk with Sam about geofencing, the first thing we would have to do is talk about the word’s definition in plain language.
Sam inspired me to become a plain language fan. It’s not just because we now have the Plain Writing Act of 2010, a federal law that sets the standards for certain government agencies to better communicate with people.
When talking with Sam in plain language, we usually find some great truths. We have to be thinking very clearly to boil stuff down to its essence. And then Sam, always a great thinker, figures out what that essence means and where that new essence belongs in his life.
So, the word “geofence” in plain language: A boundary line on your computer.
We sometimes say that good fences make good neighbors. The poet Robert Frost had more to say about that. In other words, a fence on a computer has meaning, too.
For Target Corporation, it meant a $5 million fine in April for the fence they put on customer phones in San Diego.
Our local transit agency, DCTA, experimented with a computer fence to offer van rides to the west side of town a few years ago. Sam used that van service to get to work a few times. It was very hard. I rode with him once. First, you had to travel to the fence line, then you could hail the van that only gave you rides inside the fence lines.
The day I went with him, I had to wait a half-hour to ride back to the other side of the fence. While waiting, I saw dozens of DCTA vans driving Peterbilt workers to destinations that I knew were traveling far beyond the fence lines I was traveling in.
Recently, our transit agency has drawn new fence lines for van rides. At first glance, the big pasture of service seems generous. But at the same time, they also cut most of the buses whose lines weren’t fences, but veins.
Suddenly, yet predictably, too many riders are coming from certain areas. DCTA says they may “geofence to manage demand.”
Or, in plain language: they will draw lines that push riders out.
Sam has told me more than once that he wants to ride bus to work. I began to doubt whether that would ever happen after I saw the long line of Peterbilt-subsidized DCTA vanpools. Then, when an apartment developer paid extra for DCTA to run a bus to its massive apartment complex adjacent to the warehouse district (beyond even the millions UNT pays DCTA to run buses), I gave up hope. We don’t, and probably won’t ever, have a system to serve the thousands of people like Sam, who can make their lives better with the mobility that connects them to economic opportunities–let alone the magical world that exists for all of us when our community has that kind of mobility.
Some politicians (and their constituents, of course) will always be attracted to lines like geofencing. Playground games follow the boundary lines. Winners and losers are determined by the lines. And, as we all know, some kids aren’t allowed inside the boundaries to play at all.
I doubt our transit agency board recognizes the deepest meaning of its actions as it draws these lines. The longer they allow those fence lines to exist on computers, the more those lines become real-life walls.
Mixing and mingling
Shahla and I had a book signing a week ago. Donna Fielder, a wildly successful Denton author, encouraged me to talk to the owners of the newest book store in town, Patchouli Joe’s, to see whether they were interested in hosting an event for us like they did for her. It took a while for me to screw up the courage, but once I did, they were as gracious as Donna described.
Shahla and I didn’t know quite what to expect, but we prepared for the gamut, from doing a formal reading before a crowd of strangers to sitting quietly in the hopes that at least one or two book buyers stopped by. Turned out, many friends and family came and we had a different kind of crowd. Suddenly, a formal reading didn’t seem right, so I asked if anyone had questions. We were off and running. After about an hour, we were getting tired, so Shahla deftly ended the Q&A. A few people lined up to get books signed, but most lingered, browsing the shelves and chatting with each other.
Up until then, Sam had been sitting behind us in a comfy wing chair. When he recognized that it was mix-and-mingle time, he popped up from the chair and started walking around the store, introducing himself and chatting with people. I couldn’t help but smile. That afternoon, Sam was doing much better than I was in being a social butterfly.
Here’s why. Years ago, he joined a local dance club. He learned Eastern swing dance steps, met lots of new friends, and waited patiently for women to ask him to dance. He was out in the community in this highly social way at least once, usually twice, a month. As the pandemic has waned, the dance club is slowly rebooting and he’s been out dancing again. He’s enjoying the return of social sparkles.
When Sam was little and learning to imitate and to talk, I thought we were going to have to break down all kinds of skills into incremental steps in order for him to learn. But once he learned to talk and to imitate, that elevated his ability to “learn to learn.” Suddenly, we didn’t have to break things down anymore. I never fully understood that phenomenon until Shahla explained behavioral cusps: once a person masters a skill or environment, that often leads to picking up other kinds of skills and expanding opportunities. Sam absorbed a variety of social skills while learning to dance.
Not everyone is the same. For example, I’m not sure that joining a dance club would boost my introverted ways. But, finding and achieving a cusp is something powerful to think about when you feel stuck. We touch on this concept several times in the book. Working toward a behavioral cusp can help us achieve progress and sustainability in our parenting. We all learn this way our whole lives–it’s one of humanity’s super powers.
P.S. Where to buy our new book, Responsible and Responsive Parenting in Autism: Between Now and Dreams
See Sam Drive, Horse and Cart Edition
Sam started driving lessons about two years ago. Sam would watch other riders at Born 2 Be dress up in costumes and drive their carts in exhibition drills that he enjoyed watching. I mentioned he didn’t have to resign himself to watching, he could participate and he finally decided to give it a try.
Today wasn’t his first competition, but it was the first time I was able to go and get video for you, dear internet readers. We got to the stables (near Terrell) about 9 this morning, in time for Sam to watch his instructor and many of the other competitors. His class was the last of the day to compete, and he was the last competitor. (You will see that he is joined in the cart by his instructor as a safety measure. Also, we very grateful that it was all done by noon. We both napped after we got home. It’s going to be a long and very hot summer this year.)
He said that he planned to trot the “Fault and Out” course. He’d seen a few people scratch over the course of the morning, but he was confident in his ability, along with Doc’s, to weave the cones. You can hear the whistle after the sixth set. In the stands, we were all surprised to hear the whistle because it looked like they were through, but Sam knew. He had to stop because he and Doc had knocked a tennis ball off the top of the cone. That’s the Fault. So they were Out.
Things went better for the Gambler’s Choice obstacle course. I learned that this, too, is a timed event, unlike trail patterns for riders. The more times he and Doc completed one of the obstacles, the more points they got. You will see that Sam started to try to back Doc and the cart into the U and bump out the back, but when things slowed down too much, he wisely gave up. I learned later that it’s quite difficult for a horse to back a four-wheel cart without jackknifing it.
After the events were over, one of the technical judges came by to encourage Sam and tell him what all went right. Sam told her he just wanted to finish the course anyways, because it was fun.
Racing alone. That’s the spirit.
Look for the Paul Hollywood handshake
For the first time in three years (thanks, pandemic), equestrians gathered for the statewide Special Olympics in Bryan last weekend. Sometimes, it felt like we hadn’t missed a beat (showmanship classes rolled like clockwork Sunday morning even though we were tired from the dance the night before) and other times, the grief over the lost time hit hard (hello, friend I haven’t hugged in five years).
I have to tip my hat at the organizers that recognized the athletes would benefit from an icebreaker after all these years. They outfitted each athlete with four of the same pins for their region. They had to meet riders from all the other regions in order to exchange pins and collect a full set: North, South, East, West.
It was fun to watch Sam and all the other athletes not only reach out to one another, but help one another complete their sets. God bless those who came all the way from out west to Bryan, which is in south central Texas.
Sam competed in five events in all. Many athletes in his classes are like Sam and have been riding for years. They are skilled and consistent riders. Some have their own horses. Some compete in able-bodied shows. Every once in while, though, it’s just Zen and the Art of Horsemanship and as it unfolds in front of you, it’s pure joy. I’ve posted video from all five of his events, but it was Working Trail where I wondered whether the roof would open and sun rays would shine down on Sam and Madrid, like in the movies. It was magical.
There are two moments you’ll want to savor. First, when Sam and Madrid are at the gate and you can see he knows how tell Madrid to sidle in closer so that he can easily remove and re-attach the rope. Then, the judge stands up, says “wow” and comes over to shake Sam’s hand.
A photo from the awards ceremony, courtesy of Yolanda Taylor, parent of one of the other athletes in this event:
Ways to buy Responsible and Responsive Parenting: Between Now and Dreams + Bonus Materials
Ways to buy the book
- Order paperback from Different Roads to Learning
- Order ebook from Different Roads to Learning
- Order paperback on Amazon
- Order Kindle version on Amazon
- Or, buy an autographed copy from Patchouli Joe’s in Denton
- Audiobook coming soon!
**Click here for bonus materials for parents, clinicians and the media**