Sam (getting in the car): Get in the back, Fang.
Peggy: He’s gotta give you a kiss first.
Sam: That’s the thing with love. Sometimes you can’t escape it.
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.
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 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
Peggy (watching Sam dismantle a stuck exterior door latch): Sam I think you could be a good burglar.
Sam: I’m working from inside the house.
Last week, Sam competed in the Chisholm Challenge, which has been part of the Fort Worth Stock Show and Rodeo for 18 years, (and Sam has competed every year.) The entire event was canceled last year, so simply returning to the arena felt like a victory. Plus, Sam got bucked off in practice last week, so getting back on the horse was a victory, too. Although, to be honest, I don’t think he would have considered any other option. Here are three short videos from speed events.
Ranch Riding. Sam came in first place.
Barrel Racing. Sam’s time came in second place.
Pole Bending. Sam’s time came in fourth place.
I had forgotten how wonderful a warm fire feels on a cold day. We had a wood stove at the farm. After we moved to town, installing a wood-burning fireplace insert went on the to-do list, but it would always slip down a few notches as other things crept up the list.
I grew up in Wisconsin. I have never been so cold in my life. We saw the forecast, so we prepared. We filled three five-gallon jugs and the bathtubs with water. We had two weeks’ worth of food (although my plans to make lasagna mid-week were foiled). I also made a point of finishing the laundry on Sunday night.
Back in 2011 the power outage didn’t last as long, but we didn’t suffer because the wood stove kept us warm and heated coffee (always essential) and food. Here in town we have a gas furnace, but every time the electricity rolled off during Uri, so did the heat. Getting a wood stove went to the top of the to-do list.
As the good people at Heffley’s installed the fireplace insert this fall, I learned how lucky we were that we didn’t chance using the old gas logs. (Before we moved in, the home inspector declined to check the fireplace. He told me to get a plumber instead. That job never even made the to-do list.) We discovered that the rock façade had separated from the chimney. We probably would have set the house on fire that week.
The whole experience made me re-think what it means to be prepared and resilient. We took care of some of that this year. But buying stuff (we also got a Goal Zero battery with solar panels and a portable cooktop) doesn’t necessarily make you prepared and resilient.
Perhaps the last five years’ of resolutions were leading to this moment — saying no to buying stuff, saying yes to new experiences, better connecting to others, wearing an apron (looking for simple solutions), and taking it (whatever it might be) to all four corners.
Sometimes I think about those worst-case scenario books the kids loved when they were young. They were often funny and terribly fantastical (dodging an alligator attack or elephant stampede, landing a jet, etc.) but after Hurricane Harvey, I wondered how to pitch the tent on the roof. In the meantime, we will set up our go-bags.
Climate change is here. Time to be prepared and resilient.
The first time I took Sam to school and left him for a full day was a big leap of faith. I wasn’t alone, of course. Parents want to protect their kids. And parenting a child with autism or other disability puts that protective feeling into overdrive. Eventually I saw that we weren’t alone. His many teachers and therapists were part of his village. Later that year, I walked into a special education team meeting and recognized that, for the first time in Sam’s young life, I was not “on call” for every minute of every day. It was such a nice feeling, one that left room for more thinking and reflecting about our lives, and for resting, too.
That’s not to say that his school years were perfect. We knew not everyone in his life would be as mindful. But we also knew that the perfect is the enemy of the good. When conditions warranted, someone at school picked up the phone and told us about an emerging problem. We addressed many small things before they got big. And we learned to celebrate the average and the good enough, which was its own kind of achievement for Mark and me.
So (and you knew there was a so, didn’t you, dear internet people?), I struggle deeply with the burgeoning installment of security cameras at school. We aren’t just pointing cameras at the school’s exterior doors. Or in the hallways. Or from the school resource officer’s body armor. We are pointing them inside the classrooms, too.
In Texas, parents can ask for a camera in their child’s special education classroom. The school must get consent from parents of the other kids in the class, but such camera use is on the rise. Advocates for kids with disabilities continue to press the legislature for broadening a family’s rights to footage. One day, some parent will send their child with a disability to school with a body camera if they believe it’s necessary.
I recognize that school can be a rough place for children who don’t fit in for one arbitrary reason or another. Sam was getting hassled in the boys’ bathroom one year, and solving the problem proved tricky for the aides, both women. But we figured it out.
I recognize also that some schools are hard pressed to fill their teaching ranks. There are employees without enough skills to work with and manage kids, the place where most tragedies begin.
This is not to say that people in our community might have different values from my family’s or yours. As a culture, we wobble too much in figuring out how to work with those differences as strengths and educate our children. But I have to say, where parents are asking for cameras, we aren’t reading those huge warning flags.
When Sam graduated high school, I wanted everyone from elementary school on up to have a “Team Sam” button as a little token of our esteem and affection. I ordered 250 buttons and did not come close to gifting all those people who touched his life and helped him make progress. Dozens of teachers, of course, but also speech therapists who worked with him on communication skills. Occupational therapists and adaptive physical education teachers who helped him with his motor planning and ability to calm himself. School counselors who helped him build friendships. Aides who helped him stay on task in class and occasionally take a moment to decompress when he couldn’t. And the principals and other staff who stood by and made sure all those people had the support they needed.
I had to trust these people. All of them. A lot.
There was no “trust but verify.” Where there are cameras, there is no trust.
Sam and I were supposed to go to Spain last year. We booked a cycling tour with the same outfitter that took us to Italy and Germany, and Paige and me to Ireland, over the past several years. We booked before the pandemic, but even as the lockdown began, we were thinking, naively, that with a little luck, the virus would be under control by summer, when the cycling tour would take us through the countryside around Cordoba, and into Seville and the Alhambra. Ha. Spain was being ravaged by the virus by then, and our country was on the verge of its own, first big wave. About six weeks out, the outfitter canceled the trip and refunded our money.
Sam and I biked around town last summer. It was very quiet.
When the tour catalog came for summer 2021, it seemed unrealistic to make any kind of plan to go abroad. Even the handful of U.S. tours they had, though they looked to be as much fun, felt risky. But we had to have a little faith. Our world had gotten really small. I wondered if we didn’t try to make something special happen, our mental health would suffer even more than it was. The vaccine roll-out had begun. Maybe a fall tour to see the leaves in New England could be a safe bet. Surely, the virus would be subsiding by then. Ha ha.
The company’s tours to cycle in Vermont filled up fast, so we missed that. They offered a self-guided tour of Acadia that we’d heard was good. We booked for the first week of October.
Ever since the vaccine rollout, Sam has been pushing back on letting our lives get too busy again. He wants more “thinking time” for math and signal projects he’s working on. He likes the quiet pace we found, and I agree it’s a treasure to keep. While traveling to Maine was a little discombobulating (we were really rusty with the whole packing-parking-screening thing), once we got there, it was exhilarating–as you can see below, with the boys checking the view from the Bar Harbor shoreline our first night in town:
We cycled all through Acadia National Park, learned about lobstering (and ate a lot of it), watched the stars, and got out on boat rides several times. During one nature cruise, our guide, a retired park ranger, asked how many of us would have gone abroad this year but came to Maine instead. About half of the 50 people on that boat raised their hands. Even the guide was a little surprised. Later, we visited about that moment with one of the wait staff at a brew pub who also worked part-time at the local visitors bureau. She said that they, too, had noticed many more people requesting information this year. Good for Maine.
Sam’s favorite part of the trip was that nature cruise, which took us by some of the favorite hangouts for seals, porpoises, and sea birds, including two huge osprey nests. We also saw some stunning homes along the shore. My favorite part of the trip was cycling the carriage roads through the park. They were so quiet.
The world will break your heart ten ways to Sunday. That’s guaranteed. I can’t begin to explain that. Or the craziness inside myself and everyone else. But guess what? Sunday’s my favorite day again. I think of what everyone did for me, and I feel like a very lucky guy. — The Silver Linings Playbook
Sam and I were invited to the wedding of some old friends last weekend. The couple had postponed their celebration because of the pandemic, but like most of us looking for a little bit of normal, they, too, saw the covid vaccine as a way through to their special day. We said yes to some beautiful normal that day, although we still weren’t quite feeling fully normal. We masked up for the ceremony and stayed out on the patio for the fun. It was the best day.
Sam hasn’t been able to go dancing–one of his favorite things–much at all for the past year and half. He joined an Eastern swing dance club several years ago, but they closed with the first covid lockdown last year and opened for a club dance only once, as far as Sam can tell, just before the surge of the delta variant put a damper on everything again. I think the only time he’s been out is when his aunties took him dancing on a mountain biking trip in June. (Remember June, when we thought we were finally free of it?)
On the way to the wedding, I told him there would be a DJ and music and a chance to dance. He said he wasn’t sure about staying at the party that long, let alone dancing. “It’s risky, Mom,” he said.
But, as you can see in the photo above, his eyes were soon on the dance floor. He waited for a bit, hoping a the DJ would spin a good swing dance number, but after a few tunes, he decided he would just make his move. He danced quite a bit, including at least one number with the bride. He’s a lucky guy that way.