problem-solving
Comfort skills
If there’s a Maslow’s hierarchy to unpacking, Sam and I have worked our way up a level or two on the pyramid. We’re sleeping in our own beds, washing clothes, and cooking for ourselves. Last weekend, we played board games and rode bike. And, I started unpacking books and art.
Sam is setting up his room himself. Because he’s working full-time, he’s still got a lot to unpack. He’s in the master suite upstairs, so he can take his time. There’s plenty of room and his priorities are different.
He set up the internet on the first day. Last weekend, he tested the coaxial cables, to see where they lead. He also tested light switches. Ever since he was a toddler, pushing chairs up to the wall to flip light switches, Sam determines how a home is wired. Given the time, he will set the antenna and wiring to serve both his TV upstairs and my TV downstairs. No need to pay for cable or streaming. And, he’ll label the breakers in the box in the garage–always good in an emergency. (We have many light switches that do nothing in our new home. Maybe half the rooms have overhead lights, so perhaps ceiling fans, etc., were never installed when it was first built.)
I texted Shahla and told her that Sam was in his happy place, mapping the wiring in his head and doing his best to relay that map to me.
She texted back, “comfort skills.”
That’s an idea worth thinking about. When I wrote art reviews for the Fort Worth Star-Telegram years ago, I watched an artist draw the tiny grids that formed the foundation of her large canvases. Drawing the grids was meditative, she said. Her lines were smooth and beautiful. But if you looked closely, you could also see those moments when her pencil shifted a bit. Seeing those imperfections made looking at her work relatable and soothing, too.
Think of all the things we humans do that is both skillful and meditative: kneading bread dough, tying flies, spinning and knitting yarn, sanding wood, walking the dog. Work that can be ours alone. Engaging work, but not so challenging that we get overwhelmed by it. Work that we can do to feel competent and useful. Work we can turn to when we are ready to assert some control over our lives, for times like the one we’re in now.
What are your comfort skills?
‘Metamorphosis is for insects, Mom’
The past month has felt like a purgatory, with Sam now four weeks into his new job in Modesto and me back at the house, forever packing. If it weren’t for the occasional lunch out–and that Michael has come up twice, and Terri has spent a few days here, too–the days flow one into another, like during the pandemic.
Out in Modesto, Sam has good support at work and at home. He’s staying in AirBnB on the north side of the city. He can wash his clothes on the weekend, keep food in a small pantry and fridge, and charge his car at a fast-charge station nearby. We zoom chat just about every evening. There is always some document to sign as we move toward closing on a townhome in the next few days. But we play games and share a joke of the day, too.
This transition had a lot of moving and dependent parts, and not all of them came together. During my last night in Modesto, before leaving Sam to come back to Texas, I felt myself right on the edge. There was going to be no renting a house while leisurely looking for something to buy later. I’d watched the rental market for months, but it was not at all what it appeared. For a good 24-hour period, I put down wave after wave of panic attacks, something I had never experienced before. We were going to have to buy a place. And we’d have to buy fast.
The feeling was rather like the performance anxiety from my music days, but bigger. Much bigger. Hard to see. Hard to regulate breath and heartbeat. Hard to eat food.
That first week or so, as we were pivoting to this new plan, I was able to keep my mental health in check, but it wasn’t easy. Good self-care means more than keeping the yoga and exercise routine. It also means reaching out to friends and family. I’m grateful that they responded with real strategies that helped solve problems, and with just general love and care.
I also have to detach from the busy chatter inside of my head. Once outside my head, I’m better able to closely observe physical feelings and to gather information, usually by reading. Anxiety often follows over-estimating a perceived threat while underestimating your ability to deal with it.
I confess, our life here in Denton had a nice routine that bordered on a rut. I let my critical thinking atrophy. I thought I was challenging myself, but not in ways that made me truly uncomfortable.
Sam, on the other hand, was absolutely blossoming out in Modesto. This decision was his. He enjoyed terrific support from his employer in exercising renewed control over his career. He went out with the real estate agent to pick the townhome we’re buying. He is building a new life that he likes and has a lot of agency over. For a brief period, I flirted with the idea of simply letting him fly on his own. Isn’t that what we want for all our kids?
For many reasons, financial and otherwise, I knew that wasn’t in the cards for us. But I thought we should at least talk about all the changes. As usual, I went for metaphor and allegory.
What did he think? Was all of this change maybe like coming out of a cocoon and becoming a butterfly?
“Metamorphosis is for insects, Mom,” he said.
Special education is innovation
Our need will be the real creator – Plato
Last week, a Washington Post reporter gathered up a lot of string on the status of disability rights in public education and broadcast it on the web. I’m not sure even she expected to learn that special education is innovation.
The first couple of segments featured the big policy folks, including a smiling Secretary of Education Miguel Cardona, who didn’t stray too far from his talking points. But the last segment made the hourlong watch worthwhile. Rebecca Cokley, of the Ford Foundation, and Jacqueline Rodriguez, CEO for the National Learning Center for Disabilities, are both real firecrackers.
They offered two big ideas that I have been thinking about a lot since then. One was that the pandemic was a mass disabling event, which shifted perspectives for a lot of people who didn’t count themselves among the “disabled.”
Behold the hidden scaffolds of our economy and culture, for they have disabled you, too! It was exhilarating to see so many people questioning this “structure” that, in so many ways, makes little sense.
It’s why, for example, many workers are staying remote and others are getting organized. Dell recently announced its return-to-work policy—no promotions for employees who don’t return full-time—and the words felt hollow. Turns out, Dell employees already felt they had few opportunities for advancement. Apparently, now we just say it out loud. Careful what you wish for, C-suite.
Disney recently announced that they would have to change their disability accommodation policies, after so many people used them to jump the lines. Turns out, cramming 15-17 million people a year into an amusement park to maximize profit doesn’t make a kingdom magical. That kind of accommodation was brand new when Sam was young, so we asked for it. The crowds were already massive for so many things. I can’t imagine how miserable that day would’ve been if we’d spent hours in line for Space Mountain and Pirates of the Caribbean and Mr Toad’s Wild Ride.
But back to education. According to Cokley, we look at special education backwards. Over time, special education has proven itself as a place of innovation. Many discoveries, practices and refinements that started in special ed have crossed over to general ed—the way we teach children to read, for example. She argued that if school districts and communities supported special education teachers as the master teachers and innovators that they are—and public policy experts started talking about them that way—our public education system would bounce back much faster.
Not only could we address the current teacher shortages, particularly in special education, but we’d get back to the business of education innovation and human progress.
A lot of slop and wobble
The words about to unfold below weren’t exactly how I planned to start or end this post. The house is quiet and Sam is likely napping. We just finished a Sunday bike ride down the rail trail, which felt a little like a victory lap today. On Monday, we rode the trail all the way to Lewisville Lake so we could get a good, long time with totality.
(That supposed life hack of holding solar glasses to your smartphone to shoot the eclipse? I stopped trying to take photos after this shot. I cherish the images in my memory. It was an unparalleled life experience–babies being born, totality, etc., etc.)
Today’s victory lap was marred by a motorist who chose the moment he passed us (we were waiting at the McKinney Street crosswalk by City Hall) to lay on his horn a good long time. A few motorists have done that to us in the past. Each time, as the adrenaline shoots through you, it feels a bit like someone punched you in the face.
Whether honking a horn like that should be considered assault may feel like an open question. Yet Sam’s reaction today, as in the past, convinces me that it is. He’s a beast of a cyclist, but after the horn, he took off like a cheetah. He was already through Quakertown Park and halfway down Congress Avenue by the time I got to the little bridge over Pecan Creek.
For the rest of the ride home, he’d pedal at incredible speeds and have to circle back to meet me before taking off again. I can’t imagine how much adrenaline is coursing through a person’s body that it takes more than two miles of fast pedaling to work it off. During one circle back, he said to me, “I’m a good person. But it doesn’t matter to him. That’s why I can’t feel safe.”
Risk is always with us. It’s hard to calculate sometimes. I borrowed today’s headline from a Washington Post story about calculating Earth’s rotation. I never doubted the math for the eclipse, which takes into account the slop and wobble of our little orbit around the sun. It was marvelous to sit on the lakeshore Monday, looking up through solar glasses to watch the eclipse start and progress and make the world go dark, just like they calculated.
A lot of modern life takes all this elegant math for granted. We need to remember that the world may speak in calculus, but life is not precise. What makes some math so elegant is that it hasn’t forgotten about all of life’s beautiful slop and wobble.
I suppose we could stop riding bike, but that’s no way to address the risk. Or we could insist that police ticket motorists for assault when they use their horns that way, but that introduces other risks.
Or, maybe I could write an essay about life’s slop and wobble, sending a little message out into the world that asks everyone to please be kind to all cyclists, because you don’t know which ones might be autistic.
Road trip
It took some time to notice, but both Sam and I agree the pandemic made our lives a little smaller.
Don’t get me wrong. There were things we did, things we neglected, routines we filled, habits we clung to, all that needed to change. And we stopped being busy for busy’s sake (what was that about?)
But ‘opting out’ also sets its own traps. A certain brittleness can settle in. We needed to stretch.
We’ve gone on cycling trips to help with that. Acadia National Park in 2021. Lake Champlain in 2022. But this year, we felt like we needed to nudge in another direction. After we were invited to a wedding in Phoenix, I got out the maps and started studying road trips. After all, Phoenix is just a few hours from California. As a good friend says, it’s just “map math.”
But I wasn’t planning a grand tour. This trip could reconnect us to our family’s origin story. Sam and his brother and sister were all born in Sacramento. Their father was principal tuba of the Sacramento Symphony until it went bankrupt. We lived there until Sam was 5 years old.
A road trip could help Sam see that he was a Californian and still belonged, if he wanted that option. We took the kids to California several times on summer trips. Sam went back to visit once on his own (his godparents live in Stockton) when he was in his 20s. But visiting a place for fun is different than visiting with an eye toward making a life there.
Many of us don’t always feel we have options and sometimes this seems more so for Sam. We planned this trip to explore his options,. The company he works for has a similar facility in Modesto. Touring the Modesto location could help him think about his future in new ways.
We had all the fun we could stay awake for in Phoenix, and headed out the next day. We took a nice, leisurely detour through Joshua Tree National Park (amazing!) and spent the night nearby.
Sam takes a selfie at Joshua Tree National Park, and I do my best photobomb
Then the next day we headed to Modesto, stopping in Fresno. I suggested a stop at an underground garden. I thought it would be a world’s-largest-ball-of-twine-roadside-attraction type of stop, but it turned out to be a national landmark and completely charming.
The next day, we toured the Modesto facility and wouldn’t you know, Sam already knew some of the people working there. They didn’t have any openings right then, but that’s not how Sam thinks things through anyways.
In the month since, though, I’ve heard him say many, many times, “I have options now, Mom.”
Never, ever underestimate the power of a road trip.
Fledging
Late last week, walking with Fang, we came upon a red-shouldered hawk that had just made a kill near Rayzor Ranch Park. She was standing in a field with the varmint in her talons. The varmint seemed a little too silky brown and big to be a rabbit. There are a few jackrabbits in what is left of the old Rayzor Ranch. Or it could’ve been a nutria from the nearby retention pond.
I have seen this a few times before, this waiting after a kill. Once, a hawk had landed on a rat running in our postage stamp of a backyard in California. We watched through the dining room window as the hawk waited patiently until it was safe to fly off with her prey.
But this time, a scissor tail from the park decided there was no room in the new ‘hood for a hawk. I watched in wonder as the scissor tail dove for the hawk’s back, triggering the raptor to drop its prey and lift off. The scissor tail rode on that hawk’s back for a few hundred yards before veering off and back to the park.
I knew why she was doing that. A few days before, we were walking to that park (Fang likes Rayzor Ranch Park a lot.) At one point, I was almost face to face with a pair of scissor tails fledging their young — three little guys who didn’t have their scissor feathers yet, but were flying pretty well. They had just regrouped in one of the younger trees in the park, so they were barely hidden. The parents had tucked wings and tail feathers around them, as they all wiggled and peeped and got ready to fly again. We caught up with them a second time not far away, all three fledglings perched on a fence, side by side, peeping and wiggling and trying to decide whether Fang and I warranted another flight attempt as their parents flew overhead.
The sight of it all triggered a fast rewind in my brain, other times we’ve stumbled on fledging as we’ve walked. Once in a neighborhood to the east, a fledgling raptor had to be nearby–although I never saw it–because a Mississippi kite grazed me three times until we finally went around a corner. (I was so glad to be wearing a sturdy hat.)
Another time, I saw a pair of mourning doves standing unusually close to one another, perched on the next-door neighbor’s roof. I looked around and saw the fledgling in the gutter. The little guy wasn’t going to make it. I scooped up its body the next day.
Another time I didn’t see the fledgling until just after Fang spotted it hopping in the leaf litter beneath the oaks in McKenna Park. First the momma robin dove at Fang, and then the poppa. Fang immediately lost interest in the fledgling and was already crying uncle. But a call went out anyways and within seconds, every robin in the park was diving at the two of us, like a Hitchcock horror movie.
I got curious about how much scientists know about fledging and bird behavior. We don’t know a whole lot. I found a research study from 2018. This study suggested to researchers that fledging is negotiated between the young and the parents, with different species tolerating longer stays than others. Young birds that leave before they can fly very well have a higher mortality rate, of course. The scissor tails certainly had to fledge before their tails got too long, as my own mother adeptly noted. But the young that stay too long risk discovery by predators who bring jeopardy to the entire nest, parents included.
I’m not sure how well we humans do at fledging. Actually, in terms of survival of the human race, rather poorly, I think. We understand child development a little better than adult development. New research suggests a stage of emerging adulthood that warrants our closer attention. And, as most of us disability parents will tell you, fledging a child with a disability is tough. We have organized our culture in ways that discourage cooperation and care for one another, unless doing it for money. Can you imagine being like a robin and joining the entire flock to defend someone else’s child? We are too fond of gaming the economic rules so that one group or another gains an edge, instead of raising all boats. We do this change-up so often that it’s hard even for kids without disabilities to launch.
Maybe there’s a reason we know we are doomed. Maybe there are lessons from nature. Before it’s too late.
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.
Keep learning
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.
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.
Shahla and I answer questions about our new book at Patchouli Joe’s in Denton. Photo by Annette Fuller.
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
Joy
Joy gives us wings! ― Abdul-Baha
Review copies of the new book I co-wrote with Shahla arrived on Saturday. It’s such a pretty little thing. All that warmth and wisdom on the cover is on the inside, too. And so is some really smart science. The release date is April 2. You can pre-order here.
A while back, the publisher shared an excerpt on their blog. I’ve included it below, editor’s note and all. It’s from Part Three: The Power of Loving. And it’s called Joy.
Editor’s note: Autism Awareness month is becoming a call to action from the autism and neurodivergent communities for change from the rest of society. In this edited excerpt from their upcoming book with Different Roads, co-authors Shahla Ala’i-Rosales and Peggy Heinkel-Wolfe offer a specific call to action to both parents and professionals—to seek and maintain joy’s radiating energy in our relationships with our children.
Parents have the responsibility of raising their children with autism the best they can. This journey is part of how we all develop as humans—nurturing children in ways that honor their humanity and invite full, rich lives. Ala’i-Rosales and Heinkel-Wolfe’s upcoming book offers a roadmap for a joyful and sustainable parenting journey. The heart of this journey relies on learning, connecting, and loving. Each power informs the other and each amplifies the other. And each power is essential for meaningful and courageous parenting.
Ala’i-Rosales is a researcher, clinician, and associate professor of applied behavior analysis at the University of North Texas. Heinkel-Wolfe is a journalist and parent of an adult son with autism.
“Up, up and awaaay!” all three family members said at once, laughing. A young boy’s mother bent over and pulled her toddler close to her feet, tucking her hands under his arms and around his torso. She looked up toward her husband and the camera, broke into a grin, and turned back to look at her son. “Ready?” she said, smiling eagerly. The boy looked up at her, saying “Up . . .” Then he, too, looked up at the camera toward his father before looking back up at his mother to say his version of “away.” She squealed with satisfaction at his words and his gaze, swinging him back and forth under the protection of her long legs and out into the space of the family kitchen. The little boy had the lopsided grin kids often get when they are proud of something they did and know everyone else is, too. The father cheered from behind the camera. As his mother set him back on the floor to start another round, the little boy clapped his hands. This was a fun game.
One might think that the important thing about this moment was the boy’s talking (it was), or him engaging in shared attention with both his mom and dad (it was), or his mom learning when to help him with prompts and how to fade and let him fly on his own (it was), or his parents learning how to break up activities so they will be reinforcing and encourage happy progress (it was) or his parents taking video clips so that they could analyze them to see how they could do things better (it was) or that his family was in such a sweet and collaborative relationship with his intervention team that they wanted to share their progress (it was). Each one of those things is important and together, synergistically, they achieved the ultimate importance: they were happy together.
Shahla has seen many short, joyful home videos from the families she’s worked with over the years. On first viewing, these happy moments look almost magical. And they are, but that joyful magic comes with planning and purpose. Parents and professionals can learn how to approach relationships with their autistic child with intention. Children should, and can, make happy progress across all the places they live, learn, and play–home, school, and clinic. It is often helpful for families and professionals to make short videos of such moments and interactions across places. Back in the clinic or at home, they watch the clips together to talk about what the videos show and discuss what they mean and how the information can give direction. Joyful moments go by fast. Video clips can help us observe all the little things that are happening so we can find ways to expand the moments and the joy.
Let’s imagine another moment. A father and his preschooler are roughhousing on the floor with an oversized pillow. The father raises the pillow high above his head and says “Pop!” To the boy’s laughter and delight, his father drops the pillow on top of him and gently wiggles it as the little boy rolls from side to side. After a few rounds, father raises the pillow and looks at his son expectantly. The boy looks up at his father to say “Pop!” Down comes the wiggly pillow. They continue the game until the father gets a little winded. After all, it is a big pillow. He sits back on his knees for a moment, breathing heavily, but smiling and laughing. He asks his son if he is getting tired. But the boy rolls back over to look up at his dad again, still smiling and points to the pillow with eyebrows raised. Father recovers his energy as quickly as he can. The son has learned new sounds, and the father has learned a game that has motivated his child and how to time the learning. They are both having fun.
The father learned that this game not only encourages his child’s vocal speech but it was also one of the first times his child persisted to keep their interaction going. Their time together was becoming emotionally valuable. The father was learning how to arrange happy activities so that the two of them could move together in harmony. He learned the principles of responding to him with help from the team. He knew how to approach his son with kindness and how to encourage his son’s approach to him and how to keep that momentum going. He understood the importance of his son’s assent in whatever activity they did together. He also recognized his son’s agency—his ability to act independently and make his own choices freely—as well as his own agency as they learned to move together in the world.
In creating the game of pillow pop, parent and child found their own dance. Each moved with their own tune in time and space, and their tunes came together in harmony. When joy guides our choices, each person can be themselves, be together with others, and make progress. We can recognize that individuals have different reinforcers in a joint activity and that there is the potential to also develop and share reinforcers in these joint activities. And with strengthening bonds, this might simply come to mean enjoying being in each other’s company.
In another composite example, we consider a mother gently approaching her toddler with a sock puppet. The little boy is sitting on his knees on top of a bed, looking out the window, and flicking his fingers in his peripheral vision. The mother is oblivious to all of that, the boy is two years old and, although the movements are a little different, he’s doing what toddlers do. She begins to sing a children’s song that incorporates different animal sounds, sounds she discovered that her son loves to explore. After a moment, he joins her in making the animal sounds in the song. Then, he turns toward her and gently places his hands on her face. She’s singing for him. He reciprocates with his gaze and his caress, both actions full of appreciation and tenderness.
Family members might dream of the activities that they will enjoy together with their children as they learn and grow. Mothers and fathers and siblings may not have imagined singing sock puppets, playing pillow pop, or organizing kitchen swing games. But these examples here show the possibilities when we open up to one another and enjoy each other’s company. Our joy in our child and our family helps us rethink what is easy, what is hard, and what is progress.
All children can learn about the way into joyful relationships and, with grace, the dance continues as they grow up. This dance of human relationships is one that we all compose, first among members of our family, and then our schoolmates and, finally, out in the community. Shahla will always remember a film from the Anne Sullivan School in in Peru. The team knew they could help a young autistic boy at their school, but he would have to learn to ride the city bus across town by himself, including making several transfers along the way. The team worked out a training program for the boy to learn the way on the city buses, but the training program didn’t formally include anyone in the community at large. Still, the drivers and other passengers got to know the boy, this newest traveling member of their community, and they prompted him through the transfers from time to time. Through that shared dance, they amplified the community’s caring relationships.
When joy is present, we recognize the caring approach of others toward us and the need for kindness in our own approach toward others. We recognize the mutual assent within our togetherness, and the agency each of us enjoys in that togetherness. Joy isn’t a material good, but an energy found in curiosity, truth, affection, and insight. Once we recognize the radiating energy that joy brings, we will notice when it is missing and seek it out. Joy occupies those spaces where we are present and looking for the good. Like hope and love, joy is sacred.
When there is so much hate and so much resistance to truth and justice, joy is itself is an act of resistance. ― Nicolas O’Rourke