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Sue Scheff recently interviewed the great Jaylen Arnold for examiner.com. Their conversation was so engaging (and so important) that we are reprinting it here in its entirety.
Enjoy!
Over a decade ago, freewheelin’ comedian Howie Mandel (howiemandel.com) first spoke about his debilitating obsessive compulsive disorder and ADHD—when he was outed on Howard Stern’s radio show. Now, all these years later, he’s finally opening up and “telling all”…in his candid, courageous, and VERY VERY FUNNY memoir titled Here’s the Deal: Don’t Touch Me.
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Quoting trentu.ca:
The Trent University Award for Youth Leadership recognizes individuals under the age of 25 who play a leading role in their community. Lewis Schofield educates youth and adults globally about Autism, Asperger’s Syndrome and Myasthenia Gravis, a rare and complex neuromuscular autoimmune disease for which there is no cure. Mr. Schofield raises money for Autism organizations in Canada and the United States while promoting awareness, tolerance and acceptance of difference through his artwork, writings and videos in the classroom, in the community and on the internet. Mr. Schofield is 14 years old and has Asperger Syndrome and Myasthenia Gravis. To accelerate the establishment of the student bursaries in honour of the Community Leaders Award winners, donors can take advantage of the Ontario Trust for Student Support Program (OTSS). Established by the Government of Ontario in 2005, OTSS matches endowed donations on a dollar-for-dollar basis to provide bursaries and awards to Ontario students. On October 26 2009, Trent University will host a gala event to pay tribute to the 2009 winners.
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Quoting a recent article about Lewis, also on trentu.ca:
[Lewis] raises money for autism organizations in Canada and the U.S. by selling his Art Cards online. He is also a junior moderator on FAM Family Autism Forum on Yahoo groups, providing parents with insight and understanding from a kid’s perspective on living with what he calls “an alphabet soup of diagnoses.” Lewis is also a “SouperIntendent” and regular contributor to Irked Magazine, where he has attracted readers globally since 2006 for his writings, interviews, information and currently a series of humourous videos, “Wisecrackin’ with Lewis Schofield.” “I guess I’m just not afraid to say what I’m thinking when it really matters to me,” he explains. In his interview with the International Best-Seller, Donna Williams, Lewis is asked about the “extras” that he has been diagnosed with. “I understand that you’re a kind of burger with the lot, that your AS includes added extras,” Williams asks. To this Lewis replies, “Boy oh boy–do I ever have extras and it’s ketchup for sure. I have Anxiety Disorder, Sensory Integration Disorder, Obsessive Compulsive Disorder, Attention Deficit Hyperactive Disorder, Oppositional Defiant Disorder, Learning Disabilities, Non-Verbal Learning Disabilities, Severe Allergies and Asthma. That’s a lot of things to have on a burger, don’t you think?” Lewis was diagnosed with Myasthenia Gravis in 2008, a rare autoimmune disorder and neuro-muscular disease usually found in seniors that causes extreme fatigue and muscle weakness, slack jaw, semi-closed eye lids, face droop and trouble breathing. He created a video called, “Tell Me What Time It Is,” on You Tube describing his experience with the diagnosis and explaining the procedure of Intravenous Hemo Globulin (IVIG) treatment. The video includes text with facts about the disease, narrated with original music composed by Lewis. “He exhibits a startling and rare ability to take his pain and play with it, to communicate it to others and have them learn from it,” writes Sacha Vais, Managing Editor of Irked Magazine . . . Lewis describes how being the way he is makes him strive harder to get things right: “It makes me want to change things in the world so kids and babies feel safe almost all the time. It’s not enough to want to make things better for people. You have to really make things better…You don’t have to do something really big to make a difference. You just have to do something. Otherwise, nothing changes or gets better.”
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Learn more >>
Article in The Peterborough Examiner
News segment on CHEX Television
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STAND STILL, LADDIE!
by Garrett Sax
I could never really do it. I just couldn’t. Sit still, that is. I guess that’s why Pink Floyd’s album The Wall had such a big impact on me. (For those not familiar with the album, its anthems follow a storyline, and portray the fictional life of an agonized antihero named Pink, who’s smothered and oppressed by society, and who’s building an imaginary wall around him, brick by brick and song by song.) Hearing it as I did, at the peak of the problem when I was in grade six, I related to Pink’s tortured classroom experiences. I suppose countless kids did, but with me the chord it struck was deeply personal. I was prone to distraction and, thus, to procrastination on a grand scale. I constantly had to stretch my legs, or shrug my shoulders, or crack my knuckles. My eyes had explored every nook and cranny of every classroom a million times over. I had a variety of facial twitches, that were not entirely involuntary but seemed to relieve me of some bug. I talked too much, could never simply shut the fuck up. When I was a kid, I would always be the one with the extra essay to write on “Why I should keep quiet and not disrupt the class.” I would fidget nervously in my hard wooden chair, fiddling any object within reach, constantly suffering the disciplinary punishments of teachers caught between the old, hard-knock pedagogy and the newer, kinder, gentler one. I was desperate for the end of classes, perhaps not unlike the other kids-but they seemed better able to endure their suffering patiently. I longed to hear the tolling of the freedom bell. I daydreamed ceaselessly, exploring a variety of imaginary worlds whose common thread had me as the adored hero of whatever situation, the “King of Cool.” But the truth was the complete opposite.
Most puzzling was that I always had the highest marks, which runs somewhat counter to the literature. I was supposed to suffer academically because of my “problem.” Instead, I suffered from bullying-the negative attention garnered by my good grades. I wasn’t the only disruptive kid in my school, but I sure as hell drew the most ire. I was reviled as a pariah, a fact that had a profound effect on my ability to develop a healthy sense of self. My happiest days as a kid were when I was alone, swaying in the trees behind my house, exploring our village on my bike, and other solitary activities. I had friends, but relationships were always difficult to maintain steadily. It took me a long while to understand the rules of social etiquette and my role in maintaining the thin veneer of acceptability and amiable cohesion.
The backdrop of all this was the dysfunctional relationship between my violently alcoholic father and my domineering, control-freak mother (again relating me to The Wall). This fact of our lives – the dysfunction that continues to this day – was certainly never brought up in the collusion of the parental, medical, and educational authorities who hovered over me to impose a pharmaceutical solution. No oneever asked me what I wanted, which was a good thing too, I guess, because in my terrified silence I might have become complicit in the plot. I was prescribed the usual medication: because I had the problem Ihad to take the little pill. My mother swears to this day that this is the reason I got good grades. She still has the overwhelming need to justify her actions by remembering them in the most positive light, whitewashing the truth. She didn’t know I kept the pills under my tongue and spit them out later. I got into just as much trouble as before, but we all brushed the rest under the rug of denial: plenty of toys at Christmas to forget what a rotten family we were.
But hyperactivity doesn’t end with childhood. Later on I served in the military which, as you can surely imagine, was quite a challenge given the amount of social control and individual responsibility for self-control that are inherent in the life of a soldier. I found a way to use humour to my advantage, winning allies through the alleviation of collective boredom, and finding my way to niche positions where I could work alone and with little supervision. I wasn’t any good at working with groups, as my energy levels and a lack of patience wouldn’t allow me to comfortably work with others. No one knew what my problem was, nor really cared. The military life is a strange one and is full of paradox. One oddity of the experience is that there is an interesting inclusion and solidarity by virtue of shared membership. All sorts of bizarre characters seemed less so because of our unique context. I thought I was an oddball, but some of the people I met in the army…well…I was just glad there was an army for them to be in.
Now I hold a steady job and have a small family. I live within the same limitations I always have: on the joyous side, I have learned that kids generally love hyperactive adults. We have the same energy bursts, the same need to burn it through motion and laughter. But although I found my voice and my self, and successfully overcame what previously seemed like giant hurdles, I still have my nervous fidget, my inability to sit still for long periods. When I am running errands, either at the office or on the streets of my neighbourhood, I frequently break out into a jog as if what I was doing had the urgency of an immovable deadline, when it might have been no more than going to the fax machine to send off a report or going to the store to get some milk. A burst of adrenaline rushes through me and overwhelms me with the need to move quickly. Some people at work hate me because of it, for all the averted collisions that make them stiffen up when they hear my quickened pace around the bend of the corridor.
Everybody else loves me. I’m “the funny guy.” I love to make people laugh, to be responsible for their good humour. It’s my way of gaining social acceptance on the one hand, and burning my excesses of energy on the other. People marvel at my comedic wit as I jump off one idea and into the next, exploiting whatever comic potential is afforded by absurdity and wordplay. I fly off on tangents (from a partial inability to control them!). But I damn well function. I pay my taxes on time, and put the trash out on the curb on the correct day. It’s not always easy, and there is not much room within my social spaces to come out and speak directly about life with “hyperactivity disorder,” but being the funny guy gives me the liberty to blurt things out, and make jokes at my own expense (and have no one the wiser, kind of like my bipolar friend who openly jokes about the heavy-duty medications she carries in her purse…and no one believes her!).
These are the survival strategies you pick up along the way, as you try to stake out a meaningful existence in a meaningless world.
If you are still curious about me, and piqued to know more, be so kind as to visit The Potanical Garden. A rather BIG clue lies therein…
Comfortably Numb: Marijuana and Hyperactivity Disorder
“There is no doubt in my mind that this plant was destined to be a part of my life…”
What Day Is It Today In French?
by Lewis Schofield
When I started school in Saskatchewan, my mom signed me up for French Immersion kindergarten. She thought I might like it better than English kindergarten.
Madame came into the classroom every morning and say cheerfully, “Bonjour!” This was our routine. She would say, “Bonjour!” and we would say, “Bonjour, Madame.” This went on for quite some time and it became a habit to see Madame cheerfully announce, “Bonjour!”
She tried teaching us other words in French, like the days of the week and our colours. We had mat time when she read stories in French and show-and-tell time when people brought things to class to share with everyone else.
One morning, Madame started her class the way she always started class. “Bonjour,” said Madame and we all answered together. Then she went to the first child to her right and said, “Bonjour. C’est quel jour aujourd’hui?”
In English that means, “Good morning. What day is it today?”
The boy looked at her and said, “Bonjour, Madame. Aujourd’hui c’est lundi.” Madame smiled and said to the boy next to him, “Bonjour. C’est quel jour aujourd’hui?” Again, this child answered, “Bonjour, Madame. Aujourd’hui c’est lundi.” Madame continued moving from student to student, always asking, “Bonjour. C’est quel jour aujourd’hui?” Each time, the child would answer, “Bonjour, Madame. Aujourd’hui c’est lundi.”
When she got to me, she asked, “Bonjour, Lewis. C’est quel jour aujourd’hui?” I thought for a minute or two and finally replied in my best English, “Bonjour, Madame. I have absolutely no idea what day it is today.”
My mom had to come to school that day. People at school weren’t very happy with my answer and I knew I was in trouble again. It was always like that. I would tell the truth and people would get upset.
My mom asked me to explain to her what had happened because she had heard the teacher’s version already. So I told her about Madame saying good morning to each student and asking what day it was and how every student said good morning to Madame and answered that today was Monday, except in French it was lundi.
But when she got to me, I wasn’t going to make the same mistake. You see, she kept going from student to student asking what day it was. I knew the correct answer was ‘lundi’, But Madame kept asking. so it couldn’t be the answer Madame was looking for after all. Instead of answering incorrectly and instead of answering with ‘lundi’ as every one else had, I told her the truth. I had absolutely no idea what day it was in her world.
My mom was totally ok with that answer and told Madame that, too.
I never really did get the hang of French Immersion Kindergarten. I graduated to English Immersion Grade One and I only learned to say one thing in French. I learned to tell people I was an English speaking boy who only listens in French.
P.S. My mom helped me with spelling the French words in this story
Lewis Schofield is Irked Magazine’s Alphabet Souperintendent. He, and his marvelous brain, can be found at http://www.thisislewis.net.
To buy Lewis’ beautiful art cards (with 20% of the proceeds going to autism organizations) CLICK HERE.
“Chromosomes”—a story about being in Grade 3 by Lewis Schofield
Living with Asperger’s Syndrome
Muses by Lewis Schofield
I’m a kid with Asperger Syndrome and a lot of other disabilities like Anxiety Disorder, Sensory Integration Disorder, Obsessive Compulsive Disorder, Attention Deficit Hyperactive Disorder, Oppositional Defiant Disorder, Learning Disabilities, Non-Verbal Learning Disabilities, Severe Allergies and Asthma.
Like my mom says, just because I have an alphabet soup of disorders doesn’t mean that I am alphabet soup. I’m a kid with cool ideas and I know a lot about computers, gaming systems, video games and some about programming. I have my own website (www.thisislewis.net) and it’s my job to make sure that everything on the site works well for visitors.
Everything on my website is original content because I’m a professional kid with Asperger’s and cool ideas.
