The Saturday Rumpus Essay: Wanting To Dance
“So let’s give them a big hand and make them feel real welcome. YAAAAY!” Kermit yelled, waving his green felt arms wildly. The curtain is pulled to reveal a band of bugs, or beetles, who begin to play, “She Loves You.”
Andrew, my ten-year-old brother, laughed his usual deep, rolling belly laugh and stood up from his seat on the family room floor. I looked up from my book. He made eye contact, charged over to me, tossed my book aside, and pulled me to standing. He wanted to dance. He always wanted to dance to various songs on The Muppet Show, but he didn’t always want a partner.
“And she loves you and you know that can’t be bad,” sang the Muppets in their version of the Beatles’s hit.
Andrew took my hands in his and we moved in quick, tight circles—his signature dance move, the circle dance. He laughed as he stimmed on our feet moving quickly across the family room floor.
“And with a love like that, you know you should be glad,” the bugs sang, drawing out some notes just like John, Paul, and George do in the original. (Ringo doesn’t sing on that song.) I sang along. I was sixteen years old and going through a Beatles phase myself. Andrew’s eyes grew wide and he laughed each time I drew out a note or used a silly voice to mimic the Muppet bugs. Andrew was going through what we thought was a Muppet phase.
The song ended and he clapped. He awkwardly dashed back over to the VCR. While Andrew did not have any diagnosed physical disabilities, he sometimes moved clumsily. He lacked the self-awareness that other children possessed. He did not make movements and think about how others would perceive him. He simply moved the way he wanted to, usually to get what he wanted, without hesitation. My sixteen-year-old self envied his lack of shame.
He clicked REWIND on the VCR and returned to the moment before the act started. Kermit introduced the Muppets and we danced again. And again. And I sang and Andrew laughed, like he always did at the Muppets antics. Andrew understood the Muppets perfectly, which I think surprises people. He rewound scenes when Animal destroyed sets. He loved to see Miss Piggy: “HIYA!” His favorite episodes were from season 4 in 1979-1980 with Dudley Moore, Liza Minneli, and Lynda Carter. There’s something about that band of felt puppets that still resonates with my brother today; he’s on his second set of The Muppet Show Box Set because he wore out the first.
Over the next several years, we’d dance often to this scene. And my own cover of the bug band cover would evolve; every few weeks, I’d add a new silly lilt to my voice and watch Andrew carefully to get a reaction. I wanted to make his eyes grow wide and hear his deep, happy laugh. It was one of the few ways I could tell what he was thinking—I thought.
Today, most people know someone who has a loved one with autism in 2015, but that wasn’t always true. In a way, it’s easier now to explain to new friends that my brother has autism, but autism is a spectrum disorder and where my brother is on that spectrum is far removed from many other individuals who have autism. Simply, my brother will never live alone or get married. He is unlikely to form a friendship with someone other than the people who take care of him. Social interactions are determined by what he wants. If he doesn’t want a hug, he will push you away; if he wants you to kiss someone, he will push your head towards their cheek. (Thankfully, he now only does that to close family members.) He only speaks when highly motivated and his speech can be challenging to understand unless you know him well. He needs help to perform simple self-care, such as showering, shaving, and brushing his teeth. He’s legally an adult and has been for several years now—he’s twenty-five years old. He even moved out of my parent’s home last fall and into a small group home with 24-hour staff. But Andrew isn’t the typical twenty-five-year-old and the level of care he needs sometimes makes it challenging to remember that he is an adult now and not the five-year-old we once cared for everyday.
My family and I often share memories of Andrew as a child. I think our nostalgia is more complicated than typical family reminiscing; when Andrew was in our care everyday, we could control his world. We knew what his needs were. We knew how to keep him safe.
I still think about why Andrew has autism today. I still want to understand. At thirty-two, I’ve almost accepted the perfect storm of genetics, environmental factors, and the unpredictable.
“Mom, why would God give Andrew autism?” I asked when I was eight years old. (I wish I could say my questions for God have become more complicated since then. They haven’t.) My mom explained God didn’t give Andrew autism, but rather made Andrew a part of our family because we could give him the best life he could possibly have. God knew we were the best family for Andrew.
While my mom was simply trying to answer her child’s question, I suspect this reasoning often determined the choices my family made. Yes, our lives had significantly different responsibilities and anxiety from almost everyone else, but that was okay. We were doing it for Andrew.
That understanding didn’t make everyday tasks easier though. When we were teenagers, my sister Diana and I helped get Andrew ready for bed a couple nights a week when my Mom had graduate classes. His list of bedtime rituals went beyond the usual say goodnight, take a shower, and brush your teeth. Getting Andrew up the stairs of our ‘90s suburban Pennsylvania home was more like a physical and mental obstacle; who could think like Andrew and somehow convince him to go to bed? Who could get Andrew up the stairs in our open foyer two-story house without all three children tumbling backwards down the staircase?
Diana was phenomenal at seizing the exact moment Andrew wasn’t paying attention to start steering him to the steps. (By her mid-20s, she could trick him into walking upstairs better than any family member could.) If he resisted walking up the stairs, we’d try a sillier or louder voice to get him moving again. Sometimes we’d cheat and give him piggyback rides up the steps, even though we knew he should do it for himself. After he discovered the bug band segment, we often sang, “She Loves You,” adding more silly voices as time passed.
“That’s not the lyric,” Diana would correct me.
I’d make a face and keep going. If Andrew kept walking up the stairs, I’m sure The Beatles—Muppet or real—would understand. Sometimes, our covers went on much longer than the original, lasting into the beginning of bath time.
After his bath, we’d help him brush his teeth. If you could entertain Andrew while he did a task he didn’t want to do, he was more likely to do what you wanted. Maybe this is what he loved about the Muppets; they could always entertain him. They always found a reason to be silly. Maybe this is what Andrew understood that we didn’t; our lives were serious enough. In our family, the stakes were higher if something went wrong—especially in Andrew’s daily life. Andrew challenged us to think what would make him laugh, which seems fair since he spent his days trying to navigate a world that didn’t think like him. In a way, life was easier when we saw him everyday and we were charged with his care; now, Andrew is an adult and living away from my parents. While he is thriving in his new home and more independent than I’ve ever known him to be, his new independence is also scary. He doesn’t need us every day like he once did; he has staff in his new home who provide the support he needs each day.
Giving up that much care for someone is scary. We can’t keep him safe like we once could. Back in my parents’ house, I know how that story ends—Andrew is safely in bed and my sister and I share a sigh of relief once the door closes. We don’t know how that story ends now.
My fiancée and I recently watched a PBS special on Jim Henson. I couldn’t help but find connections to my brother’s own transition to adulthood in the last year. Henson had originally created the Muppets for adults. In fact, an early pilot was called “Sex and Violence.” The first Muppet Show that ran from 1976-1981 was on during primetime and written for adults. I remembered all the sexier jokes from Andrew’s Muppet Show DVD box set and how those same jokes didn’t click for me as a child. But like most things with puppets, at some point, the Muppets’s audience shifted to children. Tellingly, Henson’s more adult fare—Dark Crystal and Labyrinth—were box office bombs and only achieved cult status after their release to video. I couldn’t help but compare Henson’s struggle to be taken seriously by adults to Andrew’s challenges entering the adult world. It took my parents several years to find the right home for Andrew. It was hard to imagine who could take care of our little guy like we did—or at least close enough so he would be safe. And if my parents did find a home that would work for Andrew, could we let Andrew grow up? What would that look like? I thought if Andrew showed empathy, he may have empathized with Henson’s desire to enter this adult world but never fully gain access.
The old Muppet Show played while Henson’s children and colleagues reminisced. Dudley Moore popped up on the screen and I sat up; he was the host of the episode that featured “She Loves You.”
I started tearing up. I wasn’t sad. But I missed that old life, the one where we could solve Andrew’s problems with a REWIND button and we knew what his tomorrow looked like because we would be there. Now, Andrew was off having his own life like any twenty-five-year-old should. And my family was left behind for once, trying to understand who we were without Andrew.
It was almost three weeks into my first year of college when the obvious occurred to me—this was the first time I was responsible only for myself. I sat motionless at my desk. I felt like if I moved, I’d break some magical spell and this would all be over before I could take advantage of my realization—and instantly felt guilty for relishing this new freedom.
I called my mother. “I miss Andrew,”
“Oh honey. He misses you too.”
Maybe he did, but Andrew didn’t tell us those things. His words were simple nouns and verbs: go, no, shake (as in milkshake), beach, and chee (as in, “Cheese,”—what you say when someone takes a picture). Andrew showed his emotions simply and clearly. If he was angry, he bit his wrist. If he wanted something, he took your hand and led you there. His honesty was a relief in my early adult years when personal relationships were becoming complicated.
“What is he doing?”
“The same thing he was doing a few weeks ago. He’s watching a movie. The dog just cleaned up a chunk of cookie he dropped.”
“What movie?” I watched my fighting fish swim around her tank. I had won her at a first-year student event. I remembered the fish we had as children and how Andrew used to drop things in their tank—bobby pins, crayons, and sometimes even Goldfish crackers. My mom thought he was trying to help their quality of life. He was giving them toys!
“The Muppets or Rugrats,” she said. “He’s being indecisive.”
She asked me about my classes, my radio show, and my floormates. I still felt like something was wrong with me. I had waited to go to college for years. I no longer had to babysit regularly. Why was I on the phone with my mom, near tears because I missed my brother? None of my friends were doing this over their siblings.
“Do you want to talk to him?” she asked. Andrew didn’t really talk on the phone.
“Will he do it?” I asked.
“We can try.” I heard her walk through the kitchen to the family room. “Andrew, Amanda is on the phone. Listen.” She must have held the phone to his ear.
“Hi Andrew,” I said hesitantly.
“He perked up! Keep talking!”
I tried telling him I missed him and she yelled he was starting to push it away.
“You think you lost your love/when I saw her yesterday/It’s you she’s thinking of/And she told me what to say,” I sang. My door was open because no one else on my floor was home and I realized my voice was carrying down the stairwell in my dorm. I hoped no one was home.
He laughed! My mom yelled to keep singing—he was leaning closer to the receiver! At the end of the verse, I stopped. My mom got back on the phone.
“He kept leaning in to listen, Amanda! And he looked at me as if to say, ‘Do you know who is on the phone?’ Do you feel better?”
I wasn’t better, but I felt good enough. And as my first year away from home progressed, I began to accept this new kind of ache for Andrew. It was unlike missing other family members and friends. For so long, I was Andrew’s sister. Now I had to figure out who I was without Andrew. It just felt so comfortable to slide back into singing, “She Loves You,” and know for that moment, everything was the same.
“We need to get Andrew a DVR,” I wrote to my mother in an email this summer. “He would love that the Muppets are back!” They were trending on social media. There were gossipy comments on talk shows about Kermit’s new girlfriend. They were going to be on primetime television for the first time in almost twenty years.
“He likes the old episodes. Plus he likes his VCR. No DVRs,” she replied. I sat for a moment and realized she was right; Andrew’s love for the Muppets had followed him into his adulthood, but his love of Animal, Fozzy, and Gonzo was born from the original Muppet Show. I thought about my own excitement for the new series and realized I wished I could watch the show with Andrew and hear his laughter at his old friends. But like the Muppets, Andrew had finally grown up. I was still trying to understand that though. The ache I first felt in my first year of college had never left.
Image credits: featured image, image #2, images #3, #4, #5 and #6 from author.