Like clockwork, the winds would blow, the storms would descend, the luscious yet desiccated gardens would flood and quickly subside, the giant Labrador, Kelly, would come creeping into the fullest room to seek shelter from the imminent threat of thunder, and the wifi would slowly fade away.
The increasingly dizzying smells of curry, the decreasing utility of each bite of paratha, and the stagnant promise of buzzing crowds colored my bittersweet time in India. "A country of contrasts" is what my host mother calls it—a nation simultaneously difficult to love and impossible to hate. How do I criticize without being culturally inappropriate? Where should the boundaries of my judgment lie? Where can my love and appreciation be genuinely placed?
This post will reflect upon the ways in which my summer in South Asia impacted me personally, academically, and professionally. My response will be truly reflective in nature, as I’ve only just begun to process my experiences in India and what they mean in the context of my life back here in the States.
I am at odds with the nature of my personal growth in India. I cannot tell whether I’ve accepted the growth I endured or if I’ve remained apprehensive, as it manifested in so many unexpected ways. Here, I’ll present a few muddled quotes, whether they be from my host parents, the wonderful people I met at Bubbles, or passersby on the street, that sum up the crooked path of my personal growth.
“You can’t change everything about the world. Some things are just meant to be the way they are.”
On feeding wild animals: “You’re doing them a disservice. You’re depriving them of the skills they need to survive in the wild, on their own. It’s more selfish than altruistic, if you think about it.”
“You speak Hindi? You look Indian. You are like my sister. I give you Indian price.”
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It has been both a privilege and a challenge to be in an environment where my learning never stops. Not only am I conducting my internship and research at a school for children with Autism, but I am also living with a young girl on the autistic spectrum named Ally, and am thus being exposed to what it means to teach a child with Autism and to parent one. I will disclaim here that there is a debate within the Autism activist community about whether to refer to those on the spectrum as “autistic” or “people with Autism.” I do not lie on either side of the debate, and do not wish to offend anyone nor make any particular statement with my word choice. Just like all other children, children with autism are vastly unique. Their unification under the Autism classification does not in any way imply a uniform experience or uniform needs, so the following observations of how my host parents have chosen to parent their daughter must not be generalized.
Ally is a phenomenal child who has far exceeded early specialists’ expectations. She was relegated to the nonverbal category and was predicted to essentially remain a vegetable her entire life. In her memoir Seeing Ezra,
author and mother of a special child Kerry Cohen expresses her frustrations with such sweeping diagnoses about her autistic son at such a young age. How can one stressful evaluation be enough to determine her child’s future? Why aren’t her motherly instincts respected in the context of her child’s difficulties?
The life of a child with autism is rarely predictable, and the extent to which these children understand and absorb the world around them can seldom be measured. Skills arise out of nowhere, and other difficulties may manifest with time. To relegate such a young child to a life without meaning almost seems a sin in and of itself, especially after living with and witnessing the full force of young Ally.
Living with Ally was a learning experience in and of itself, and I am eternally grateful for the lessons I gleaned about autism and acceptance from her presence.
She laughs heartily, jokes tastefully, and knows what she wants and exactly how to get it. She knows right from wrong, friend from foe, believer from non-believer. She has sports lessons in the mornings and cycling in the evenings, clears everyone’s plates from the table and, when her father allows, pours everyone’s drinks. Seeing Ally without a book in hand—or four—is like peanut butter without jelly. She blows kisses when she gets her way and bumps you with her bum when she doesn’t. The beauty and complexity of her personality, her being, warrants much more space than a single blog post, but at the moment, that’s all I have.
Though her parents insist that the credit is all hers, her progress is surely a reflection of their tireless dedication. Their philosophy goes as such: It’s not about us, it’s about her. Ally means everything to us, and we love who she is. It’s always been about her and what she needs. She is our boss. She is our teacher. We take her everywhere we go because she needs to see, hear, and feel as much as possible.
“I’m so active on Facebook because of my Mums…” Ally’s mother says. She is Trustee at the Bubbles School for Autism and runs training sessions for mothers of Bubbles students about how to continue the therapy they receive at Bubbles in the home. “They need to know that it’s ok to take their children out, to live their lives. Why should we live our lives halfway because our child has Autism?”
Why should they?
Sarbani is the founder and everything-woman at the Bubbles Centre. She was one of Ally’s first teachers, which is how she built a relationship with Ally's mum, Elizabeth Albuquerque-- a relationship that subsequently informed the Albuquerques' investment in the land that is now the Bubbles Centre. (If you are just now tuning in, Ally is my host sister, a wonderful young girl on the high-functioning end of the Autism spectrum.)
It took merely one day to pick up on Sarbani’s otherworldly connection with the children at Bubbles and the second-nature manner in which she communicates with them. It was from her that I initially learned the importance of directness when communicating with children with Autism. Unlike communicating with neurotypical children, it is not rude or condescending to spell things out, and it is important to encourage children with Autism to do certain things—simple things—on their own.
Take nine-year-old Akil, for example. Akil is a high-functioning child on the spectrum who has difficulties with eyesight and mobility. Another noticeable disconnect is that he frequently forgets where he puts his things—generally his book bag and his shoes—despite designated spaces for students' belongings. On my first day at Bubbles, Akil seemed to be standing right in the midst of his belongings wondering where his shoes had gone. Sarbani was seated on a stool in front of him, directly next to the shoe rack where poor Akil’s shoes sat patiently, waiting to be acknowledged. Whereas I would have picked up Akil's shoes and placed them near his feet with a smile, Sarbani took a different approach that would guide Akil himself along the 6-inch path to his orphaned shoes... and it was brilliant.
Akil and I dance to "Chai Chai, Coffee Coffee" during movement time at Bubbles' Summer Camp. The sensory experience of music and movement is both therapeutic and instructive for children with Autism and it is thus incorporated into their daily schedule. Photo courtesy of the Bubbles Centre.
“Where are my shoes?” Akil asked.
“On the shoe rack, Akil. Where’s the shoe rack?” Sarbani asked.
“I don’t know,” cried Akil.
“Well, where’s Sarbani?” Sarbani asked, in an unsuspecting third person.
Akil turns to Sarbani.
“Your shoes are on the shoe rack. And the shoe rack is next to Sarbani. So where are your shoes, Akil? Look next to Sarbani.”
And Voila. Our little Akil located his gray and red crocs, plopped them on the ground, and scooted off-- all on his own. All he needed was a bit of a nudge, a nudge peppered with the basic level of specificity that our society deems useless after age two. Yet, this is the level of specificity upon which children like Akil so basically depend.
I made a mistake while designing my research: I was too blindly optimistic about what my research question had the potential to unveil. My goal was to explore the future prospects for children on the Autism spectrum who have attended and are attending the Bubbles School. My research was set up in a way that sought clear-cut responses to clear-cut changes, yet Autism itself is all but clear-cut. One cannot know the exact cause of Autism for any given child, nor can that child’s place on the spectrum be precisely located. In short, it is a struggle even to discover what autistic children need to lead full lives, and the nature of support required to attain such fulfillment varies by child. As such, the obvious becomes not-so-obvious, and the little things—the little progressions in development—cannot be taken for granted.
Like a classic college student, I reverted to overlooking the obvious. Observing the children at the Bubbles School and speaking with staff members has helped me reel in my research fantasies and come to terms with the reality of Autism, a reality that I am still hard-pressed to accept. Experiencing, understanding and accepting Autism as it truly impacts its possessors requires a complete re-socialization of communication and social acceptability. For me, this process began with re-conceptualizing what a school is meant to accomplish for its students. During my first interview with Bubbles founder Sharbani, I realized that there was a bit of a disconnect between the answer I expected and the honest answer she proposed when asked about the children’s future after they leave Bubbles.
She said that those who are highly functional, or who have mastered enough social skills, will sometimes transfer to mainstream schooling. Other high-functioning students are taught printmaking and are allowed the space and resources to produce sellable textiles and art products. The path for those who do not reach the “highly functional” stage, according to our conversation, was not so clear. Only then did I realize that the outcomes for children at the Bubbles School are not necessarily meant to be vocational. Instead, Bubbles’ primary objective is to promote self sufficiency for each child and to mitigate—not eliminate—the amount of social support they will inevitably need from those around them.
“It’s all common sense, this stuff,” Sharbani said.
Eye contact. Attention span. Interacting with other children. Being able to sit still in a classroom. Using words to express feelings. Following simple instructions.
It seems that all children experience difficulties conforming to these skills at some point during their development, but the the difference for children with Autism is that the development of such skills does not come as quickly as our society would expect, and the rapidity with which these skills do
develop for children on the spectrum—if they develop at all—is unpredictable. This is what Bubbles prepares for – years and years of compassionately and effectively filling sensory and communicative gaps that typically-developing children are able to fulfill with very little assistance.
I've developed a deep affection for driving in Bangalore. It's nothing less than a chaotic, orderless game of Chicken, but there's something paradoxically peaceful about it. Perhaps it's my host mom's calm demeanor as she weaves her tiny, bright red Suzuki between caravans, autos, cows, packed busses, semi trucks, and men, women and children equipped with nothing more than an outstretched arm. Perhaps it's the lack of road rage, despite the utter madness. But most likely, it's the more straightforward fact that the hyper-awareness required to maneuver the streets of Bangalore actually seems a bit safer than mindlessly following traffic rules and expecting everyone around you to do the same.
You'll find just about anything in the streets of Bangalore besides rule of law, yet there's something peaceful, even artful, about driving without boundaries.
To drive and survive in Bangalore is to be both skilled and fearless. It's honestly an art, as mesmerizing as Van Gogh's Sunflowers on a cool, spring day. Though an anger-filled, startling nuisance in the States, the car horn is a source of consolation in Bangalore. Instead of "come on, you idiot!" it becomes" "watch out, friend!", and instead of shrinking shamefully at its use, one grows wary of the driver who remains horn-shy amongst such disarray.
Ally absolutely loves it. She's a young girl on the autism spectrum, my host sister, and the most amazing kid I've ever met. Her absolute thrill over near-death experiences in the family automobile is both terrifying and heartening... "Up-down papa, up-down!" she yells as we dodge over-ambitious two-wheelers, hop over stray speed bumps and dip into meteor-sized potholes. Makes you wonder whether or not it's really worth it to worry so much about that which remains completely out of your control.
As I prepare for my departure to Bangalore, India, I’m feeling pretty disoriented. I can’t yet fully appreciate the gravity of what, exactly, I will be doing in just about a day. After all, I'm still cranking out final research papers. This is my first time traveling/volunteering abroad for an extended period of time, and only my second time traveling to the eastern hemisphere. I pledged that this summer, the summer leading into my senior year, would be my “travel summer,” one in which I address all the regrets that might arise after graduation and ensure that they remain obsolete.
When I touch down in Bangalore, I will be met by an old family friend, Elizabeth “Liz” Albuquerque, who works as Trustee at the Bubbles Centre for Autism. Liz’s passion for raising Autism awareness is rooted close to home, as her 18-year-old daughter lives on the spectrum. Though not directly related to my particular area of study, the opportunity to visit Liz and volunteer at the Bubbles Centre began calling me even before I’d heard of the SISA fellowship. I’d never met Liz, but I was humbled by her work and her unapologetic media presence in advocating for Autism Awareness, and I felt a sense of deep pride having been associated with such a wonderful human being, albeit from a distance. The opportunity to apply for his fellowship, then, seemed to descend from the heavens (read: make its way into my inbox) at just
the right time.
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