My brother is autistic | Royan Lee | TEDxKitchenerED

when I was in elementary school I badly wanted a pet dog like many kids I dreamt of having a hyper intellectual canine like Snoopy whenever I read those peanuts comic books I went to the library and read every book that I could find about dogs from cover to cover like many children have done over generations I used every persuasive tactic I could think of to try and get my parents to get me that dog pretty soon my request devolved into embarrassing tantrums but guess what it worked one day we went to PJ's pet store in the mall and got ourself a little white fluffy dog we christened her muffin muffin was a terrible dog she would bite people on a whim Yap like a horrible electronic wind-up toy and treat our entire home as her own personal toilet it seemed like a big mistake to get muffin the truth is though that muffin was not the problem it was us who was incompetent completely unprepared to take care of a dog in fact we had so much to be thankful for in her you see my brother he's always been differently abled he's been diagnosed as having pervasive developmental disorder by a doctor that perhaps hasn't read any psychiatric literature in decades and then finally autistic my mother and father had a hard time with them as you can imagine when you have a child with a disability it's hard at the best of times but when that challenge intersects with all manner of under-privileged you can feel hopeless at the best of times or just numb at the worst my parents grew up in pre Samsung South Korea and they they both stopped going to school sometime before puberty and they came to this land like millions of others to try and find a better life for their children to find that American or Canadian dream to this day even after living in Toronto for over four decades my mom speaks English with great if not charming difficulty and I don't see my dad much because he has issues of his own which are starkly similar to my brothers when he was young by far the most difficult thing about living with him was that he was a runner if there was a crack in the door he was off with the speed of light a little hint of daylight like road runner an open road or a sidewalk like Forrest Gump in race mode that's where muffin comes in she was like a superhero any time he took off usually unbeknownst to us she would be after him like a homing missile I want you to visualize a chubby little Asian boy in various states of dress running past the window of your house as you're having a cup of tea and I can see that you are appreciating that both the hilarity and also the tragedy of that but what was great about Martin was that she would be relentless in trying to grab a vice grip on the butt of his pants to drag him home it wasn't an Instagram era so I don't have many photos and video loved it well this is the best I can do it actually looked a lot like that but my talk today is not about dogs and how wonderful they are even though they are I want to talk to you today about people and how marvelously weird they are I'm gonna talk to you today about things all of you can relate to growing up in a bizarre family teaching strange children and why the adjectives I'm using right now should be considered strengths and positives that we can recognize and leverage rather than to stamp out and fix I want to talk to you today about how much better the world is when we let go of our inequitable and fruitless pursuit of normal and instead embrace the many different ways that people use their brains so let's start with this thing we call special education if you're an educator in the audience I ask you how many times you've heard uttered or thought this phrase before don't worry you don't have to feel guilty I know even as a special educator myself I've said it or thought it many times it's such a common discourse in education that we are rarely admonished for it but to elucidate how destructive this sort of narrative might be let's compare it to other instances where we use this mentality you've probably my apologies to Nickelback fans out there don't worry we've all enjoyed a Nickelback song come on let's face it and how about these terms I know they seem far less offensive but I feel that sometimes implicit meaning can be more sinister than explicit ones when we say I don't know how you do it or she's a saint we don't seem to mean it exactly in the same manner in which we say it to an olympic swimmer or somebody who works as an emergency room surgeon educators and parents of kids with special needs don't need a discourse around their work which posits pity as praise or depicts everything they do as either an act of martyrdom or an act of dropping out of that martyrdom when we say how do you even deal with that it seems like we are suggesting that working with some of the most marginalized people in our society is inherently an undesirable task shouldn't we all just consider ourselves educators and even parents of kids with special complex diverse needs instead of just leaving it to a small cadre of noble individuals going that extra mile of course this narrative is only reflective of the greater society in which we live everywhere we go we inflame the stigma around being differently abled for instance going by numbers such as these you would think that your encounters with people that were different or special would be fairly common not that it's always visible of course but I ask you how many times do you feel like you have these encounters with people like my brother at work in your office walking the dog or waiting in line for your skinny cinnamon Dolce latte let me connect this back to my own experience again of being a brother of an autistic it was as he was reaching the later years of elementary school that my brother started to become someone we didn't necessarily want to showcase out in the world before that when he was younger running through the streets with a foot white fluffy dog on his tail it was like people gave him a pass for being a little too jovial strange and a bit quirky as he became older and not as cute it's like his personality became more of a behavior problem with regret deep in my heart I remember thinking to myself why can't my brother be normal the little boy that I used to cuddle and wrestle with who I used to sing songs with now felt a bit more like a burden I always used to wonder these things and it was around that time perhaps not coincidentally that I was having my own existential crises deciding that global work and travel would be my only way out of these troubles although there's a part of me that feels guilty for leaving my family at a time when they needed me most I realize in retrospect that it was the best thing for everyone involved the old adage which states that you can't help someone unless you help your own self really rings true for me here there was no way that I was going to be able to support anybody if I didn't sort out my own ship so my adventure is working and traveling abroad culminated and some great things meeting the woman of my dreams becoming a citizen of a different country in both the literal and metaphorical sense and starting my own family I was one of those it's a cliche to say this but who truly found themselves traveling the world the growth I experienced and my self-awareness and efficacy was exponential to use the most understated term I just became a significantly better version of myself and one of the ways I did that was by putting myself out there sharing my stories being as open as I could even though even when it resulted in negative situations that allowed serendipity to really help my life I had no idea for instance that I would end up a teacher with a passion for pedagogy and connected so deeply to my own personal experience I didn't know that my first teaching job would have a boy in the class with almost the exact same learner profile as my brother so many weird things like this happen so six years passed while I was overseas and things were not well with my family their health and finances were in a risky State and my brother was ending his run with public schooling an ominous time for many families which with the child with complex needs strangely in contrast I was thriving overseas I was honored to receive academic scholarship to pursue my studies in critical pedagogy so a newfound passion of mine at the time I'd become a family of my own as I stayed it my wife and I had created a most beautiful creature she was most certainly the apple of my eye if not a bruised one as she was very difficult to care for very very colicky but our challenges as first-time young incompetent parents were nothing compared to what was going on in my first home of the great white north every time I called home I would feel pangs of regret electrocuting me through the phone line for now my great life overseas had to be put on hold my loving wife agreed to come support me and coming back home to Toronto from the moment we stepped off the plane from the height of southern hemisphere tropical summer to the depths of Toronto in January things got very difficult it was winter and as they say we were discontented my brother was unrecognizable to me he was physically massive angry and unstable the boy with the light beaming out of his eyes that I knew as a child was replaced with a thousand-yard almost lobotomized stare I was always the one who could make my brother happy by singing him the theme song from sonic hedgehog video game or talking about the Toronto Blue Jays but now he acted like I was a stranger to him I'll never forget the day when he ran up to my one-year-old daughter and pushed her to the ground utterly perturbed by something only he himself could understand I remember having to get physical with them and wondering to myself am I gonna have to fight my brother today I have to fight him everyday being so stunned and angered by this incident I just didn't know what to do I felt helpless I was searching everything that I could under Google with the terms Ontario disability supports funding the process was like trying to herd puppies in a snowstorm I was going from one voicemail to another completely unaware of what the best strategy was I would talk to one person they would tell me to go to that person that person will tell me to go to another organisation and then I'd end up after several other moments of passing the buck talking to the same person I started with it was and often still is very demoralizing but that's when I learned the first lesson of supporting and caring for somebody with with special and complex needs don't take no for an answer I learned that if somebody says oh yes we will get back to you then I'd have to call back the very next day and stop listening to that part of our brain that tells us oh you might be annoying or you might be rude if I if somebody said they've got to get back to me in a week I would call back them back the very next day I also learned something else I had to stop feeling sorry for myself I had to stop waiting for the day when my brother would be normal I had to stop waiting for him to be fixed like a car that wouldn't start I had to stop wishing that he would come out with me and have a beer and talk about things men are supposed to talk about basically I stopped wishing he would become something was not I realized that my brother has so much to offer the world I realized that he was so kind and that he only knew how to be kind I realized that it was just that he was flummoxed as to how to get love reciprocated I realized how determined he was in stoic and greedy as they say and that he never thought selfish attention like many of us do you I also realized that when he understands the context when you can figure out what is going on around him that he's more dependable reliable than many people that you know and I started to appreciate how much strength and wisdom my brother was sharing with me he's my constant reminder that social norms that we have in the world are just that socially constructed concepts that vary from context to context and evolve over time he's also there to remind me that the world even though we've made so much progress is still an inequitable place it's still exclusive my brother also reminds me that communication isn't something that happens just because you tell someone something or you email them a message or write it in a memo it's when messages are sent and received and reciprocated he's also taught me so much to explore this great new concept and movement called neurodiversity as Steve Silberman states in his mind opening book neuro tribes conditions like autism dyslexia and intention deficit hyperactive hyperactivity disorder should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of Technology and culture rather than a checklist of deficits and dysfunctions so I want you to think of people like my brother that you know and Rhea and try and go a place where I am now where I appreciate weird much more over normal i've disavowed my pursuit of it because when we try and hold that concept in our hands like so many granules of sand it's so much more liberating to just let that stand go and trust me the beach is much more beautiful when you do so I'm so thankful to my brother for making me a better educator and a better dad and husband my main vocations in life and I'm thankful to all of you for listening to my story today thank you

Channel: TEDx Talks

Views: 36,516

Rating: 4.9386792 out of 5

Keywords: TEDxTalks, English, Canada, Education, Early education, Education reform, Mental health, Personal education, Personal growth

Id: dcjNwVQRZIE

Length: 21min 24sec (1284 seconds)

Published: Thu Jun 16 2016