hope
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.
So Sam and I are doing a thing
Sam put in for a transfer to WinCo’s warehouse in Modesto. He starts at the end of the month.
I promised Sam I’d serve as moving manager. While this is not my first rodeo, it still took a while for me to figure out a path through this transition. Alan Ginsberg’s first thought may be the best thought, but my first thoughts about how to get us back to California were sort of Beverly-Hillbillies-loading-up-the-truck on steroids.
Then I remembered another great writer, Anne Lamott, and how it’s best to tackle big things bird by bird.
Working through this transition in batches helps lead to better thinking and choices, and finding natural (and more affordable!) supports along the way. For example, Sam will stay the first few weeks in an AirBnB, in a house with rooms that are set up for traveling nurses. I’ll fly out with him to help set up the essentials. An auto transport company will bring his EV a day or two later. He can get a running start at work while I pivot to finding a rental that fits our unconventional family. (I keep stumbling onto farm houses for rent, which I find interesting and cannot wait to learn the back story.)
Working through this transition in little batches leaves room for better reflecting. We remember lessons learned from our prior moves, of course. But sometimes we were just clueless. Mark was a huge fan of “leap and the net will appear.” He wasn’t wrong, but even when you’re young, that kind of blind faith can take a toll.
Doing things in little batches also leaves room for other people’s wisdom. That wisdom makes for better decisions, and it goes a long way to keep fear and anxiety in check. We built a good life here, surrounded by people we love and a community we cherish. We got really comfortable (maybe too comfortable). But Sam saw Texas has some mighty storms on the horizon, storms that could be rough on our unconventional family. When we came to that fork in the road, we knew which way we had to go. Connecting to wisdom helps.
Wisdom welcome below.
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.
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.
Reciprocity
Hello, dear internet people! Are you ready for another excerpt from the new book? In Part Two: The Power of Connecting in Between Now and Dreams (pre-order here!), Shahla and I describe what it means for parents to connect to others as they nurture their children. When we connect to one another, we foster our shared growth and we strengthen the beautiful ways we can respond to our child. All kinds of people bring energy and wisdom to this journey — friends, family members, neighbors, professionals.
We were particularly inspired by the woman who cut Sam’s hair when he was in elementary and middle school. Connie taught us all a great lesson about reciprocity in relationships.
Connie, Sam’s barber, with her grandson, the apple of her eye
Edited excerpt below:
Reciprocity, the ways in which we demonstrate our care for one another and influence and depend on one another, breathes life and depth into our relationships. Mutual dependence is part of the human experience. The most meaningful relationships might start by attending the same class, then remembering birthdays or taking turns buying lunch, eventually deepening over the years by sharing child care or stepping in when someone starts cancer treatment. Reciprocal interactions with family and friends not only nourish our lives but can also help our autistic child by creating healthy and natural dependencies that bring progress in a sustainable way. When we understand and value reciprocity, we can boost its practice and our family’s quality of life.
Consider how young children learn to play together, for example. A child without autism approaches another child at preschool who is playing with cars, but just by watching the action at first. Then, the child picks up another car and begins playing along. After a minute or so, the two children create together an imaginary scenario for the cars. The play then becomes a learning, rewarding experience for both of them. That is one key of reciprocity—it is founded on mutual reinforcement. Each person receives some benefit in the relationship. The benefit may be transactional, meaning that something immediate happens that both parties value. The benefit can also be relational, meaning that things happen over time that are important to both individuals, and the value occurs when they are together. Reciprocity also involves coordinated and shared attention. Each person finds happiness in the other person’s happiness.
Many of us, including our children with autism, struggle with reciprocity, especially in the beginning. We are all in the process of learning about reciprocity in our own growth and development. Consider the circles of people around us who make our life better and help further our understanding. For most of us, family and close friends make up the inner circle. Groups of friends from spiritual communities, social clubs, or sporting activities are in the middle. The outer circle is filled with our acquaintances and professionals, such as our barber, school counselor, or family doctor.
Michael Ball, an elementary school guidance counselor in Texas, thought a lot about the friendship circles among the schoolchildren. The students with disabilities, he knew, would have a hard time developing friends for their inner circle from that middle circle of friendships. To change that environment, he created many circles of friends, inviting a student with a disability into his classroom once a week along with several children without a disability to spend time together. He offered the circle of friends an activity they would all enjoy. He was careful to pick something the child with a disability could do with some success, yet something all the children would enjoy doing or playing. Then, he’d let things unfold, working with them to solve problems along the way, if needed.
Children with autism often need coaching or other guided practice to take part in basic reciprocal social interactions, such as playing with siblings at home, with friends on the playground, or at a birthday party. Other children with autism may only need priming or a special script that details what happens and how best to respond to basic social cues. Some children may also need to expand their interests so they have more to share and can find common ground with family and friends.
We can be on the lookout for interactions, large and small, that take advantage of the power of reciprocity to build our child’s world. Our child’s ability to move through these moments brings its own kind of mastery. That’s one reason that therapists work hard to teach very young children with autism how to imitate other people. Once our child can imitate others in different ways and situations, they are better equipped to learn many more things and faster. Their ability to learn and master new things can become so powerful that some structured teaching becomes obsolete for them, and reciprocity fills the gap. Reciprocity gives us access to new relationships. It’s like the difference for all of us after we learned to read—then we read to learn. We enjoy reading, too. We access new worlds when we read.
These big moments don’t stop in childhood. In their paper on behavioral cusps and person-centered interventions, Garnett Smith and colleagues described Sarah, who was twenty-two. Sarah’s grandparents were concerned that she was a homebody. She enjoyed watching college basketball on television. Her grandparents took a chance and encouraged a friend to take Sarah to a game. She enjoyed herself so much that she continued attending games and other large events. Her reciprocal interactions with other people increased exponentially. She talked with workers at the concession stand and with the players after the game. She participated in halftime activities. Her world expanded. In fact, Sarah developed a whole new set of social skills around the experience, a classic example of a behavioral cusp. She was much less of a homebody. She even asked her grandparents to go to other sporting events.
We can be on the lookout, then, for activities that capture reciprocal contingencies. Our child can join other family members preparing the table for a meal. They can take turns playing a board game with a sibling. They can write thank-you notes. In this way, everyone can be our child’s ally. Life is filled with many gentle back-and-forth interactions, all worth fostering because they make life better and have the potential to create their own sustaining energy for our child’s progress.
For example, Peggy’s son, Sam, couldn’t tolerate haircuts when he was a toddler. Peggy resorted to cutting his hair while he slept. It worked well enough, but when her next-door neighbor, Judy, a stylist, heard how they were coping, she offered to help. Judy brought her supplies to the house. Sam sat in the high chair in front of a full-length mirror in the living room. Sam told Judy how to hold his hair as she cut it. She was patient and went along with his directions, and still managed to cut it well.
When the family moved, Peggy wondered whether she would have to find someone willing to make house calls, like Judy did. She found another stylist. Connie had a big heart and boundless sense of humor. She kept Sam looking good from boyhood trims through the high school trends.
The whole family got their haircuts on the same day. Connie would ask Sam’s advice, who was next in the chair, and everyone conferred on the plans. As he got older, Sam stopped telling Connie how to hold his hair and let her cut it as she would for any client. Then, the conversation became whatever Sam or Connie wanted to talk about. Getting haircuts became a powerful lesson in reciprocity. Judy opened the door, and Connie showed how reciprocity builds those connections. She understood that the circle of what is given and received grows wider with the years.
Then Connie got cancer. Sam understood that she became too weak to stand all day and cut people’s hair. He found another barber. The relationships, begun by the simple act of cutting Sam’s hair, had brought out the best in everyone. When Connie died a year later, Sam and the rest of the family felt the loss of a friend. They still miss her.
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
Refrigerator Mother 2.0
Only a few generations ago, some doctors blamed mothers for their children’s autism. Psychologists wrote long theoretical papers based on their observations of mothers and their children. They concluded that autism mothers were cold and that their lack of love triggered the child’s autism.
If you stop to think about that idea for a minute, those explanations were quite a leap. And a cruel one at that.
We humans look for patterns in the world around us–it’s almost one of our super-powers. We use the information to make meaning, and create loops of ferocious thinking that make the world around us a little better.
Therefore, knowing that we’re supposed to make things better, the Refrigerator Mother explanation for autism just begs the question. How much did those early theoreticians consider and—most importantly, rule out—before concluding they’d observed a pattern of mothers who don’t love their children?
Granted, many people were immediately skeptical of these mother-blaming theories, including other professionals and autism families. The theories fell after a generation, but the damage was done to the families forced to live under that cloud as they raised their children.
And, the blame game is still out there.
The latest iteration has started in a similar way, with people seeing problematic patterns in autism treatment. Young adults with autism are finding their way in the world. Some of them had good support growing up, but the world isn’t ready for them. Some of them had inadequate support growing up, so they have an added burden as they make their way in a world that isn’t ready for them either. Some are speaking up not just about the world’s unreadiness but also about that burden. We must listen. Autistic voices can help us find new patterns and new meaning and build a better world for all of us.
We should be careful about letting one person’s experience and voice serve as the representation for the whole, because that’s how the blame game begins. Even back in the old days, when information was scarce, we had the memoirs of Temple Grandin, Sean Barron, and Donna Williams to show us how different the experiences can be. As Dr. Stephen Shore once said, if you’ve met one person with autism, then you’ve met one person with autism.
Here’s an example of how that can break down: some now argue that asking an autistic child to make eye contact, as a part of treatment service, is inherently abusive because eye contact feels bad for them. Missing from that argument is the basic context, the understanding that for humans to survive, we need to connect to one another. For most of us, eye contact is the fundamental way we begin to connect, from the very first time we hold and look at our new baby and our baby looks back at us.
I asked Sam recently (and for the first time) whether making eye contact is hard or painful for him. I told him I was especially curious now that eye contact changed for all of us after living behind face masks for a year. He said this, “Eye contact is very powerful. I wonder whether I make other people uncomfortable with eye contact.”
He’s right. It is powerful. And he just illustrated the point about one person’s perspective.
When Sam was young, we never forced him to look at us. But after a speech therapist suggested using sign language to boost his early communication, I found the sign for “pay attention” often helped us connect.
The additional movement of hands to face usually sparked him to turn his head or approach me or Mark in some way, so we were fairly sure we had his attention and that was enough to proceed with whatever was next. Over the years, we’ve shared eye contact in lots of conversations and tasks. But if not, we recognized the other ways that we were connecting and I didn’t worry about it.
All of this context—both the need to survive and the difficulty with a basic skill needed for that survival—cannot go missing from any conversation about the value of teaching an autistic child. Some people with autism do learn how to make eye contact early on and are fine with it. Some don’t. For this example, then, we can listen carefully to adults with autism and their advocates as they flag patterns from their bad experiences with learning to make eye contact and make changes. But that fundamental need to connect and share attention remains.
That’s when we also need to remember our tendency to blame others when our troubles feel intractable. Sometimes, in these fresh arguments over how autism treatment should proceed, I hear that same, tired pattern of blame I’ve heard since Sam was born. Take it from a worn-out mother who’s been blamed plenty over the years: some arguments are just another round of the same, they just come inside an elaborate wrapper of mother’s-helper blaming instead.
All the families I know truly love their children and are learning how best to respond to them. We can’t forget that parents have a responsibility to raise their child as best they can. Let’s talk, please. But please also, let’s spare the rollout of Refrigerator Mother 2.0, because it could cost us a generation of progress.
Take it to all four corners
Olga Korbut changed the face of gymnastics when I was in junior high school. She looked so graceful and athletic in Seventeen magazine’s photos from her performance at the 1972 Olympics. As you might imagine, many of the wiggly tweens in my gym class were excited that our teacher added a gymnastics unit, largely because of what Korbut had inspired. Now, we could all experiment with moving through the world that way. That’s also when I learned one of the rules of floor exercise: a gymnastics routine can borrow from dance and mix in lots of tumbling, but it must also go to all four corners of the mat.
Korbut competes in floor exercise at the 1972 Olympics.
It’s a curious rule, yet wise when you think about it. It requires the competitor to be thorough as they challenge their body. I started thinking about that rule again recently and decided to add it to my ongoing pursuit of small, yet large, New Year’s resolutions. For 2021, I plan to take things to all four corners.
Last year’s resolution, Wear An Apron, feels prescient now, given the pandemic. We certainly spent a lot more time in the kitchen in 2020. But the bigger idea behind it–that whatever problem we faced, someone out there solved it already–kept us grounded, too. Online, we found Khan Academy to help Sam (and me) learn calculus as well as a sewing pattern and instructions for face masks vetted by some pragmatic nurses in Iowa. On YouTube, I started following a smart yoga instructor and my dad’s favorite backyard gardener, a fellow in England whose bona fides begin with his unapologetically dirty hands. Even streaming The Repair Shop revealed wide-ranging wisdom about problems I didn’t even know could be solved. Awesome.
Thinking ahead to this year, I remembered an editor who would remind us reporters to nail down all four corners of an investigative story before publication. Smart advice, but it also created a defensive image in my mind’s eye rather than something inspired by filling up the space of a gymnastics mat. Don’t get me wrong, it’s important to be able to rigorously defend your choices and actions, but the big idea for 2021 shouldn’t be about the pursuit of perfection. Instead, going to all four corners means planning thoroughly, and being careful and deliberate.
Raising kids, especially someone like Sam who needed so much, shunts the pursuit of perfection to the side in favor of steps that move toward progress. But I can’t say we always took it to all four corners.
For example, Sam does pretty well in the kitchen. All my children learned cooking and cleaning basics and food safety. Now, Sam does so well with some recipes that I can plan time off in the kitchen when he steps up. But I know we haven’t taken it to all four corners. Managing a kitchen is hard with all the planning and shopping. And the principles of cooking that let you tackle a new recipe, that’s something else, too.
So, not such a small idea after all. But it may be warranted for 2021, because I bet once we let loose the reins from the pandemic, there could be many things that need to be thought through again, and to all four corners.