From 2022 Symposium Storytelling Evening
It was a Saturday in May of 2011. Dance-recital day. The morning was a flurry of ballet slippers and tutus. I had slicked our six-year-old daughter Courtney’s hair into a tight bun, applied lipstick to her tiny lips, and handed her over to her dance teacher. My husband, Todd, our eight-year-old son, Brian, and I lined up to wait for the auditorium doors to open. We grabbed seats, front and center, and settled in. The lights dimmed, and the show began.
It quickly became clear that Brian was not long for this adventure. He was speaking in full volume while the rest of the audience was hushed. He was restless. The music was too loud for him. The lights were too bright for him. The songs that evoked wistful emotions made him visibly sad. The cheerful songs made him bouncy. People sitting in the row ahead of us began to turn around. Some looked away just as quickly. Others stared.
My familiar train of thought was leaving the station: “Here we go again. We can’t do what other families can do. I was foolish for thinking we could. What’s wrong with me? What’s wrong with us?” Todd and I made a game-time decision: he and Brian would head home during the third number. I spent the rest of the show in tears.
Brian was diagnosed with developmental atypicalities when he was two and a half years old and received a formal Asperger’s diagnosis when he was five. Since he’s most at ease in his world of numbers, action figures, and bowling, a dance recital was his seventh circle of hell.
As I look back on that memory, part of me feels critical: Why had we expected him to be able to attend at all? Another part of me holds deep compassion for us, those young parents who were trying like hell to figure it all out.
Research indicates that parents of special-needs kids have an elevated risk of divorce. Special needs themselves do not cause divorce. It’s just so easy for parents to get lost in different places. Todd and I have definitely gotten lost in different places over the years, but thankfully we’ve managed to find each other again and again.
Author and physician Gabor Maté says that when we’re young, we risk trading authenticity for belonging. I was the oldest daughter in a chaotic family system. I learned to belong by excelling. Dot every I. Cross every T. Maintain control. Create order. Exceed expectations. The greater the stressor, the greater the need for control. That’s just how I roll.
It’s how I roll as a parent: case in point, my daughter’s very tight bun, not a hair misplaced. It’s how I roll as a partner to Todd: sometimes, he has to gently remind me that no one will die if we let the dishes sit in the sink for a few hours. Early in my career, it’s how I rolled in my work as a couples therapist, too. I wanted every session to go perfectly, every couple to walk away with profound insights. Of course, over the decades, I’ve had to learn that there’s no room for perfectionism in therapy. Watching love’s choreography is a bit like watching a bunch of five-year-olds dance on stage: you never know what’s going to happen, no matter how much you want them to stay in rhythm.
As a therapist, I’ve sat with hundreds of couples. Each had their own rhythm, and each has imprinted on me in ways I’ll always carry, consciously and unconsciously. But one couple has changed my life completely, a couple I’ll always carry a bit differently, a couple so special that I spent years tucking them in my purse and taking them everywhere I went. This is not a metaphor: this couple is tiny and plastic: Lotso and Chunk.
Lotso and Chunk are villains in the movie Toy Story 3. Lotso Hugging Bear is an oversized strawberry-scented magenta teddy bear with angry eyes, and Chunk is a muscular orange rock monster. These bad guys entered our life shortly after that fateful dance recital, during a trip to the Disney store in downtown Chicago—which is, by the way, my own seventh circle of hell. Brian loved the Toy Story movies, and he was a collector of action figures, so he picked these guys out as souvenirs of a day spent exploring the city.
Initially, Lotso and Chunk didn’t hold a place of particularly high honor in our home, but when recital day rolled around the following year, something strange and wonderful happened. After we previewed for Brian that he and daddy would go sit way up in the balcony because it was always empty, Brian said, “Okay, well, Lotso and Chunk want to come along.” To be honest, we didn’t think much of it. Todd threw them in his pocket, I grabbed the bag of dance gear, and away we went.
At the theater, I headed for my favorite front-and-center seat. Todd, Brian, Lotso, and Chunk headed for the empty balcony. There, Brian held this tiny couple in his hands for the entire show. He took on the voices of Lotso and Chunk, and he provided colorful commentary from the first dance to the grand finale.
They angrily critiqued the dancers. They complained about the loud music. They lamented the brightness of the lights. They were proud of Courtney but had little use for the rest of it. They were the finest of helpers, carrying, on Brian’s behalf, the stuff that was too tough for him to carry on his own.
Lotso and Chunk have attended every subsequent dance recital over the next 10 years, including this year—even though Brian is now taller than any of us.
A developmental disability does two things at once: it affects development, and it develops over time. Therefore, as Brian has evolved, so have we—and so has our relationship with Lotso and Chunk. When Lotso and Chunk came into our life, it took me a while to trust them. I thought we shouldn’t need them. I said things like, “Brian should be able to sit with us at recitals. If we were better at discipline, he’d be able to sit with us. People will judge us for letting Brian talk during the show.” I made a hard thing harder—which I absolutely excel at doing. Rather than just letting myself grieve that parenting Brian means creating a steady stream of adaptations, I added a layer of shame. I got lost arguing with reality.
Todd doesn’t get lost there. He doesn’t know how to confuse grief and shame. When I say things like, “What will other people think?” he famously responds, “Fuck ‘em.” In my worst moments, I judge Todd for the way he refuses to judge us. In my best moments, I tuck in and draft off his acceptance, allowing it to create ease and levity inside of me. That’s the heart of intimacy, isn’t it? Intimacy doesn’t require sameness: it requires curiosity about difference and awareness of how complementarity creates possibility.
Our marriage has had to flex and expand and adapt to the challenges of raising a guy who dances to the beat of his own drummer. Todd and I have created complementary zones of genius. When it’s time to argue with Blue Cross Blue Shield about reimbursement for Brian’s various assessments and therapies, he brings the gruffness of Lotso and the perseverance of Chunk to those battles. When it’s time to translate Brian to the people around him, or to translate the world to Brian, I’m as creative and diligent as they come. Unlike Lotso and Chunk, I mostly use my creativity and diligence for good, not evil!
When Brian began carrying Lotso and Chunk with him wherever he went, I was carrying with me a list of worries about his future. One of them was, “Will he go to college?” Brian is now 19. He’s kind and gentle, and he’s away at school. He attends a transition-to-independence program, and he takes classes at the local junior college. Lotso and Chunk are with him. They sit on his desk, more a luxury than a necessity for him these days. They’re two grumpy guys in semiretirement, I suppose, present but relaxing after a job well done.
A few weeks into the program, we were on FaceTime, and Brian said to me, “Mom, I’m more emotionally stable than I’ve been in years.” My reaction to his observation was what Brian calls a MEM, a multi-emotional moment. I felt three distinct things at once. One, relief. He’s launching and thriving—every parent’s dream. Two, joy. I’m so happy that he’s found a place where he feels both challenged and supported. Three, shame. He’s happier than he’s been in a long time—while living six hours away from me.
What’s different for me today is my relationship with that third feeling, one that might’ve derailed me at one point. I recognize that shame for what it is: a relic. It’s the little girl I once was, who hated to see people she loved in pain, who confused her helplessness with worthlessness, and who made everything her fault because, well, that’s what little kids do. Through that lens, it’s understandable that part of me risks confusing Brian’s happiness with some failure of mine as a mother. Since we know that shame cannot persist when we hold it up to the light of love, I can speak the shame out loud, usually to Todd, who’s been loving me for decades and will call my destructive train of thought what it is: fucked up. (Lotso and Chunk would be so proud of Todd’s crassness!)
And when Todd helps get me back on track, because of positive sentiment override (thank you, John Gottman), I can laugh instead of feeling insulted. And because of the power of love, I can allow Todd’s delight about Brian’s progress to become mine too. And we can move on to the work of reimagining our marriage in the context of our ever-emptying nest.
A marriage is profoundly personal. It’s a story that’s written and rewritten by coauthors and made up of ordinary moments, extraordinary moments, and everything in between. But the strongest couples are the ones who are open to help—the ones who can surround themselves with allies, inviting others into the trenches with them, to validate the difficulties, ease the load, and heal impasses. That’s what a therapist can do for couples, but that’s also what Lotso and Chunk did for Todd and me. They reminded us that we are not alone, and we don’t have to do it all ourselves.
Earn CE Credits
Just for reading the Networker!