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IZZY'S ROOM

I might describe meeting Izzy as an auspicious alignment of the stars. The universe brought us together at The Autism Treatment Center of America™ in the fall of 2011. Her parents, Sam and Merwin, flew her there all the way from Singapore for a week-long intensive in The Son-Rise Program®. This particular week happened to be my last week working on their campus as a volunteer, and the week, my now-husband Nick accepted a job in Singapore. We got to know one another over lunch and I asked if they would be interested in having me come and work with Izzy. I think they were skeptical about whether or not I would actually turn up on their doorstep in Singapore but we all agreed that it would be perfect. So, in January of 2012 we packed up, moved to Singapore, and I began working full time as Izzy’s playroom volunteer. 

 

I began my work with Izzy by joining her in her exclusive and repetitive play. In The Son-Rise Program, we begin by focusing on connecting and building relationships through joining, a technique that to the untrained eye can look identical to mirroring or imitation. However, joining actually calls for a deeper level of engagement with the activity. Joining in this way is about diving into an activity and awakening your sense of inquiry, even if engaging in the activity seems strange or foreign. It’s about embracing the unknown and uncovering what’s hidden beneath the surface. It also requires a willingness to suspend judgment and assumption, remain open, and trust what emerges. At its heart, joining is about communicating ‘I see you, I support you, and I’m with you.’ Joining Izzy often meant flipping through the pages of a book over and over again. Or walking around the room, holding and picking up different objects, all while reciting lines from her favorite cartoons. She was four years old at the time and aside from telling us what she wanted, or more often what she didn’t want, Izzy had very few interactive communication skills. She seldomly made eye contact and showed very little interest in playing with others. 

 

After several weeks of joining Izzy, I began to notice patterns in the way she moved around the space. I also started to recognize bits and pieces of the lines she was reciting. She would circle the room one way then the other before pausing in the center of the space to whisper and repeat, ‘the acorn... ya ya yahoo!’ When I finally figured this out I was so excited I shouted the line with great enthusiasm and Izzy stopped and looked at me! As I began to celebrate her for stopping to look at me she tossed me the plastic ball she was holding and began reciting the whole song to me! 

 

“We found the acorn, we found it over here, we found the acorn after looking everywhere! 

We found it, we found it, so let's all clap and cheer! Ya Ya Yahoo!”

 

We spent the remainder of that day’s session engaged in an interactive game for the first time. I was thrilled and Izzy’s parents were equally elated! This was Izzy’s first sustained social interaction. 

 

In this moment I truly understood the power of joining.  Joining illuminates a child's interests and motivations. Izzy was never arbitrarily walking around the space, picking up random objects and reciting seemingly unrelated songs and scripts, she was reenacting a game of hide and seek. Specifically, she was recreating a game called Find the Acorn which she had seen on Baby’sFirst TV. In the video clip Sammy and Eve, two cartoon squirrels, take turns hiding an acorn for each other to find. When they find the hidden acorn they celebrate by singing and tossing the acorn back in fourth. Joining Izzy with a loving excitement and curiosity not only allowed me to discover what she was doing in her exclusive and repetitive play but created an opportunity for us to bond over a shared experience.

 

This experience also allowed me to understand why joining Izzy felt second nature, as if the practice was somehow deeply ingrained in my muscle memory. Joining Izzy felt no different from improvising with a partner in the dance studio. When I’m improvising with a dance partner we join each other by engaging shared movement practices like mirroring, recalling, or unison as a means of connecting with one another. Like The Son-Rise Program joining technique, these activities are about cultivating a bond through shared experiences. They are a practice in attunement—in connecting to someone else’s world in a way that requires you to tune in, deepen your understanding of what it means to listen, observe, and embody something that is not your own. I knew then why I had been drawn to work as a volunteer in The Son-Rise Program. 

 

Throughout the next four years Izzy continued to flourish. She became a highly verbal, inquisitive, and socially engaged young girl. She loved comedy and drama. So we spent a lot of time making up silly stories and acting out funny scenes and scenarios from her favorite books. One of our most memorable games entailed using an owl puppet to sing the Miss Susie rhyme while spontaneously changing the names of the characters in the song. Her favorite verse was, 

 

“Miss Susie had a baby

She named him Tiny Tim

She put him in the bathtub

To see if he could swim.

 

He drank up all the water

He ate up all the soap

He tried to eat the bathtub

But it wouldn't go down his throat. 

 

Miss Susie called the doctor

The doctor called the nurse

The nurse called the lady

With the alligator purse.”

 

Her favorite rendition of this verse was sung using the characters from Toy Story. One day after playing this game for well over an hour Izzy took the owl puppet and began to sing the song for me. For the first time she was doing more than just physically participating in play, she was using her imagination and spontaneously creating her own funny lyrics! I could sense her shifting and changing as I sat watching her perform this little song for me and later for her mom. 

 

Izzy was blossoming, emerging from her self isolating world and beginning to express excitement and enthusiasm for engaging with others. Sharing in Izzy’s transformation was an incredible experience. I loved working with her and I loved The Son-Rise Program’s approach to autism therapy. The playroom environment never felt like a classroom and I never felt like Izzy’s teacher. In fact, more and more, the playroom became just as much of a sanctuary to me as a dance studio. I was Izzy’s playmate and companion and she was my duet partner.  

 

In my improvisational dance practice, composing with an ensemble is no easy task, and transitioning from a soloist to a member of the group requires you to first spend time developing partnerships in duets. Spending time one on one in this transitional space plays an essential role in your subsequent success as an ensemble member. It is the space where you experience "becoming"—becoming aware of yourself, your relationship to others, and the environment around you. It’s the space where you learn to connect, communicate, and negotiate. Ultimately, it’s the space that teaches you how to be in partnership with one another and prepares us for composing as an ensemble. The same was true for Izzy. Similar to composing with an ensemble, engaging in and navigating the complex social dynamics of a group environment is not easy. Expecting Izzy to navigate this would have been unrealistic if we did not first provide her with the one on one time she needed to develop the skills that make these interactions possible. The Son-Rise Program playroom offers exactly this—a safe space to explore and develop interpersonal relationships. 

 

Being Izzy’s playmate meant that I not only witnessed, but played an active role in her transformation. We navigated challenges and ups and downs together. There were times when Izzy tested her limits and boundaries, and I had to confront my own self-limiting-beliefs and judgments. For instance, there was a period of time when Izzy wanted to engage in activities that were destructive. This included filling bins of water and bringing them into the room where she could splash and soak her toys. There is no obvious harm in this activity. However, the floors were beginning to show signs of lasting damage, and Izzy had on more than one occasion slipped and hurt herself. So, water play was limited to bathtime. In The Son-Rise Program we try, to the best of our ability, to create an open, non-combative space that doesn’t require us to enforce many boundaries. However, there are inevitably going to be unforeseeable challenges to tackle, and for us, water was one of them. We explained the new rule to Izzy and gave her a variety of alternatives to engage. Still, Izzy was determined to find a way to bend the new rule. She would attempt this by asking me to sit in the farthest corner of the room with my eyes closed. Then she would say, “Marie, please be quiet and don’t move.” Of course, being the easy-going and flexible playmate that I was, I would comply. In fact, I would even celebrate her for having sustained eye contact while she was communicating with me. This was one of Izzy’s major goals! However, my compliance obviously came with a caveat, and I would remind Izzy that I was happy to comply for as long as she wanted unless she crossed the boundary and began fetching water for her toys. Each time she endeavored to push the limits with me, I would have to conjure the capacity to remain steadfast in upholding the boundary. This wasn’t easy at first. I was smitten with her attempts to outwit me and weak in the face of her cleverness. I was also blinded by the fact that her mischievous pursuits were simultaneously expanding her social communication skills.  Over time I was able to shift my perspective, reframe my intentions, and return to the task with a clarified sense of purpose. I learned how to be unwavering in my love whilst maintaining a boundary that ultimately was enacted to keep everyone safe. 

 

It also meant that I had to become really comfortable with tantrums. Sometimes in order to maintain consistency and enforce these boundaries, we had to remove or retire certain toys for short periods of time. Izzy would often cry and sob in these moments. This too was challenging for me in the beginning. As a young girl crying was usually intolerable to the adults around me and I was constantly being told to stop crying. But this was not the message I, nor her parents, wanted to communicate to her in these moments. Instead, we wanted Izzy to know that her response was ok, that her feelings were valid, and that we were capable of holding the space for her to express the full range of her emotions. Learning how to do this meant shedding old beliefs from my own childhood including letting go of the notion that we should stifle our emotions or shy away from expressing how we feel. Obviously, there are times when we want to sit alone with our emotions, but this should come freely as a choice, not at the expense of our emotional wellbeing. Learning how to do this for Izzy showed me that it was possible for me to hold space for myself and my loved ones in this way too. Years later this skill, this way of being, played a pivotal role in rebuilding my marriage. My husband and I would have to witness each other in the darkest of human emotions, but it is possible to bear the most vulnerable parts of your soul when you meet in a space that makes room for and honors the expression of ourselves in the fullness of our human complexities.

 

These moments were transformative for us both and in many ways, I grew up as much as she did in her playroom. Working with Izzy taught me a lot about love and how I want to show up in the world—for my friends, my family, my community, and for myself. She is also the inspiration and reason that I co-created the nonprofit Embrace Autism Singapore. Her footprint in this world is larger than she may ever know, and because of her thousands and thousands of other children throughout Southeast Asia now have access to and support from programs like The Son-Rise Program. 

 

Today, Izzy is thirteen years old and attends a Waldorf school. She has friends, she takes taekwondo and piano lessons, she’s even learning a bit of Chinese and German. She’s also a typical teenager. She loves boy bands and has a crush on at least one member from each of her favorite groups. From time to time she still struggles to understand different social cues or behaviors but she confronts these situations with curiosity and a desire to learn. She expresses how she feels, asks for help, and has more love and compassion for the people around her than most thirteen-year-olds. We no longer physically meet in her playroom, and I no longer live in Singapore, but Izzy and I are still connected. 

 

Now that we live oceans apart, we stay connected through social media platforms. I wake most mornings to find a text from Izzy via WhatsApp. Since I’ve been in quarantine throughout most of the ongoing COVID-19 pandemic, Izzy's first text to me each day reads, “What are you doing at home today?” My answer is usually exactly the same, or comes with the occasional variation, but Izzy never expresses any negative judgment about this. Despite knowing she might get the same response from me each day, she’s still genuinely curious about what I’m up to.  She will even ask me to send pictures of my foster kittens, the tea I’m brewing, or the Ikebana flower arrangements I’m learning to create. We also send each other clips of ourselves trying to reenact the dances from her favorite boy band’s music videos. Even from a distance, our relationship has grown into a friendship, a kind of sisterhood even, and we can hold space for each other in a new way now. In fact, she’s becoming one of my teachers. She sees the world with a limitless perspective. Her spirit is luminous and renews my own sense of joy and delight in the world. She reminds me to slow down, that there is beauty and insight within seemingly mundane moments. Her kinship helps me cultivate resilience. She inspires me to keep going, even when that means repeating the same routine day in and day out. Her presence and her consistency in questioning, “What are you doing at home today?”  brings me back to the playroom, and to the dance studio. It invites me back to my work as a mover and an improviser. It allows me to reset and attend again to the tasks of movement exploration, creation, and research. Above all, it reminds me to attend to the present moment, to follow the emerging threads, and join in the repetition because its path always reveals something new.  

  

film still by Samantha Chua