Friday, November 18, 2011

'The third parent'

Sophia Isako Wong (left) is an associate professor of philosophy at Long Island University in Brooklyn, New York. She is also a sister to Leo (right), who has Down syndrome. Below is a short story Sophia wrote about her childhood. But first she speaks about her research into children who take on a parent role in caring for siblings with disabilities or other members of the family.

In my research, I analyze existing psychological research on ‘parentified’ children in the US and the UK to explore how distinctive elements in the early caregiver role negatively impact children’s emotional and moral development.

The research shows that taking on the parent role prematurely as a child has mostly negative impacts, to be honest with you. Of course there are many positive things that come out of growing up with a sibling with disabilities, some of which I've tried to show in the story, but I feel that children are harmed when parents ask them to take on responsibilities requiring adult skills. Hope the story doesn't come across as too hard on my parents. It wasn't their fault they didn't know about respite for the first 25 years of my life.

‘The third parent’
By Sophia Isako Wong

It is a hot summer afternoon and I am looking at a pig. Large, pale pink, smeared with dust, bristly, and panting, the pig lies on its side in the shade of a wooden shed. It hasn’t moved in the past 20 minutes. My 10-year-old brother sits cross-legged on the cement, having positioned himself directly opposite the pig, so that he can look straight at its face. He is staring attentively at the pig, watching its every move, even though it never moves. He looks like a besotted lover watching his beloved sleep. In fact, the pig is probably asleep; its eyelids are almost closed.

I examine my brother’s face. Chin propped in his hands, elbows on his knees, he is blissfully unaware of my impatient mood. He is daydreaming about the pig, perhaps imagining the pig’s dreams. He is utterly content and at peace.

“Leo? Let’s go see the river otters. Remember when we saw them playing in the water last week?”

He doesn’t turn his head towards me. “Not yet. I’m watching the pig.”

“Still? Why do you have to stay here so long?”

“I love pigs.”

This is our weekly routine. Every Wednesday, our mother teaches violin students in our living room. She hands me money and kisses us goodbye as the doorbell rings. Hand in hand, my brother and I walk up the hill, then down the gentle slope to the Storyland Valley Zoo at the end of the road. I pay our admission, and snatch glimpses of other animals as Leo pulls my hand with determination, heading straight to the pig. Leo sits down in his appointed spot, right across from the pig, and refuses to budge until he has had his fill of pig-watching.

I am bored. I explore the entire area adjacent to the pig’s enclosure with my eyes. I see dirt, dead grass, the fence against which Leo presses his face, an intriguing house-sized cage next door with tropical birds drowsing in the afternoon heat. I sidle toward the cage and position myself so that I can watch the birds while still keeping an eye on my brother in the background.

Sometimes I play a game in my mind, fantasizing that I walk away from him and go to visit two or three other animals while he is entranced by the pig. Unlike Leo, I don’t have a favourite animal. I like to see them all, to take in the different sights and sounds, to explore the whole zoo as much as possible. I hate staying in the same spot every time. When I’m with Leo, and I’m always with Leo because our family takes him everywhere, we never get to see more than a few animals each week, because we spend most of the time pig-watching.

Walking away from him is just a fantasy; I am fully aware that I can’t take that risk. If anything happens to him, my parents will never forgive me. I’m responsible for getting him back home, safe and happy, once the lessons are finished. If he makes any mistakes, gets into trouble, or bothers anyone, perhaps by going up to them and hugging them, or sitting in a man’s lap to stroke his beard admiringly, it will be my fault for not watching closely enough. I am the third parent. I am 11 years old.

During Leo’s pig phase, he drew pictures of pigs, made pig-like sounds, received toy pigs for every special occasion, and watched that same pig every week for the whole summer. When we asked him not to “eat like a pig,” he would reply, “Why not? I love pigs.” He squealed with delight when our grandmother brought him a huge life-sized pig toy from Japan, covered with fabric in a curious floral pattern reminiscent of an Irish granny’s dining room. The two of us spent many happy hours throwing the pig at each other in a game we called “Dodgepig.”

As Leo matured, he stopped worshipping pigs. Now a middle-aged adult, he paints many kinds of animals, especially African wildlife, and his #1 top favourite is hyenas. I think he first fell in love with hyenas when they appeared onstage as masked humans in military-style khaki combat boots, snarling rebelliously and plotting against the Lion King.

These days we don’t see each other more than once a year or so. The New Year has started, and it is the night before Leo has to get up early to catch his flight home. We’re both tired, but we don’t want to go to sleep just yet. So we are lying side by side, enjoying our time together, not wanting to say good-bye until the last minute.

I ask, “Leo, why do you like hyenas so much?”

His reply is simple: “Because they’re carnivores.”

I think I know what he means. Hyenas are powerful, strong, clever animals who eat fresh meat. Like dogs, but they get to run wild and free. They watch larger predators kill their prey, then move in to scavenge their meals. When Leo eyes my unfinished plate, asking “Ummm.. do you have plans for that?” he is scavenging extra food along with the hyenas.

Leo opens his mouth and emits a sound I’ve never heard from any human throat before. It is a low growl, almost like a Tuvan throat-singer’s undertone, which I cannot reproduce no matter how I try. After years of voice lessons, he can relax his throat and reach below the normal range of his baritone voice to produce this frightening, throaty growl.

This sound inspires me to make a hyena mosaic. I select shades of Mexican smalti (glass) for the hyena’s body and mix dark grey marble and glass to make that fearsome growl come alive. While I outline the shape of the hyena, a bright red and orange crown emerges unbidden on her head, so I call the piece “Hyena Queen.” I mail it to Leo in celebration of his 40th birthday.

He calls me while I am at work and leaves a voicemail: “Hey, Sophia! I want to give you a message. Your parcel just arrived. For my birthday present. The hyena mosaic. And… I like it!”

Above is a photo of us with Leo’s hyena collage and drawing, a sculpture of a hyena, and my mosaic on the wall behind us.


This is a beautiful post. It provides me with a bit of insight as I prepare for my middle daughter's growth, as she's wedged in between her older and younger sisters, both with cerebral palsy. I learned early on that we couldn't 'mortgage' her future with caregiving after my wife and I are no longer able, but I never thought about how our asking her to help could easily turn into being a 'third parent'. With your permission, I'd like to link to this post from my blog and preface it with some of my own thoughts. Thank you Sophia (and Louise)!


Thanks, Tim. Yes, I'm looking forward to learning about your perspective as a parent. The metaphor of "mortgaging the future" is apt. Failing to plan for a disabled child's future care leaves the sibling as backup caregiver for life. I know several folks who gave up having their own families because their future is thus mortgaged.

I love this piece, Sophia. It is not at all harsh toward parents. Back in the day, parents of disabled children didn't have many choices, and siblings always know siblings best.