We're well into day two of Tectonic Theater Project's Uncommon Sense production week. Light focusing is up next. #UNIUncommonSense
Autism speaks softly, but does not carry a big stick. Perhaps that's the problem. Often overlooked in the many policy ideas under the umbrella of health care, autism is too often a lower priority when push comes to shove in the legislative agenda. Perhaps a bigger voice is needed, figuratively, a bigger stick if you will!
That's why I was happy to participate in community outreach meetings on behalf of the autism activists in the Cedar Valley. I am excited to see the vision of Uncommon Sense come to fruition. By raising awareness of what IS in the autism world, we can begin to work on what OUGHT to be ... on behalf of persons with autism, their families and support network.
I look forward to celebrating the completion of Uncommon Sense, which will raise awareness and increase understanding, leading to action to improve the health care services for those on the autism spectrum.
As a mental health provider, working with children, I see so many of the real life stories presented in Uncommon Sense. This piece truly brings to life more than just a diagnosis on a piece of paper or a letter home from a school teacher; these are the lives of our truly exceptional and those who love them.
Being part of this project was more than a moment to create art representing life. As I was reading the part of a young man, sharing his need for belonging -- pleading for acceptance -- while showing true compassionate love for those around him, I felt a small aspect of what my own clients aspire to share. We spend so much time finding strategies, practicing skills, building confidence to say the very words this character shared. It was then that it truly hit home that this isn't a character, this is more than a backstory... this is the narrative of a human's life, an exceptional person trying to share their personal narrative with those who cannot see nor feel their full experience.
For this opportunity, I am deeply honored and humbled. The importance of this brilliant piece is paramount; the impact, so great.
My twin sons were diagnosed with autism almost twelve years ago. If I could go back to that diagnosis day, I would tell myself this:
The diagnosis won't change your kids. They are the same wonderful children, but now they have a diagnosis. The diagnosis will open doors for therapy, respite, and Medicaid waiver programs. Autism will never define them.
You will feel isolated socially. It will be difficult to take your kids to playdates or to the local shopping center. One day you will notice that many of your friends are fellow parents of differently-abled kids. They understand in a way nobody else can.
You will worry if it's too late to start a therapy. You will worry if you can afford it. You will research, ask questions, and wonder if you will ever see progress. You will discover to trust your instincts.
You will drag your son to speech therapy year after year at the hospital. It will be a battle to get him into the office. He will need to be carried in, kicking and screaming. One day you will start crying and announce to the speech therapist that he is done. You are done. You walk out, and you don’t ever return. It will be one of the best decisions you’ll ever make.
You will laugh out loud when your son wonders if a rude girl at school is related to Al Capone.
You will learn to speak up and ask questions. You will learn not to care what people think of you.
You will be surprised when you discover you are pregnant again. You will wonder if it's a singleton or twins. You will worry about where to put the baby (or babies!) in your modest home. (Can the baby live in the garage?) Everything will be chaotic, but you'll survive. You will have gray hair and bags under your eyes. You will learn about hair color and makeup.
You will meet people who will amaze you: teachers, principals, associates, and kind-hearted students. You will appreciate the work of SLPs, OTs, and PTs. You will be grateful for the many people who will enter your family’s life. Without autism, your paths would never have crossed. You will be convinced that many of them are angels.
You will nearly lose your mind when you and your husband decide to drive cross-country to visit family. Your son will play the same Elf movie clip for hours on the portable DVD player. You will have car trouble. Even though your nerves will be shot, you will call the trip a success because you made it there and back without losing anyone. Plus you will still have your sense of humor.
You will laugh when your son wears his Mickey Mouse ears on top of his winter coat hood while waiting for the school bus. It will be his way to say, “Mom, take me back to Disney World.”
You will understand that your husband is the best father in the world, and you can’t imagine being on the journey with anyone else.
You will cry when your son say his first words, even though they are not intelligible to everyone he meets. You will be delighted when he gets his own AAC device and can push buttons to say, “I love you” and “I want some ice cream.”
Your heart will nearly burst when you see your sixth grade son on stage at an all-state choir, one of the few students chosen as a solo finalist. You will wonder how the world can get any better or more beautiful than it is at this moment.
You will learn that some people will never understand autism, nor will they try. That’s okay, too. You don’t need them in your world. They might get there someday. Or not.
You son won't always be getting up at 2:00 a.m., ready for the day. You will meet a holistic pediatrician who will help your family in many ways with diet, sleep, transition, and anxiety. Some people will think you’re nuts. Trust your instincts.
You will not work a full-time job. Your children need consistency and comfort, and you give them both by being there when they go to school and arrive home.
You will laugh when your son says he wants to go sledding because he has always liked gravity and acceleration.
Every morning you will wave goodbye to your son when he gets on the bus. One morning several years from now, he will wave back. It will be the greatest feeling in the whole world.
You will lose your patience. You will yell. You will think you are going off the deep end because raising kids with autism is difficult. You will learn to take deep breaths and go for long walks.
You will be very pregnant, shopping in Target. One of your sons will lie on the floor and scream. The other child will start crying. You will hear people whispering that you shouldn’t have another child if you can’t control the ones you have now. Continue to take your kids out in public. Eventually it will get easier.
You will be proud of your son and his athletic ability. He’ll attend Special Olympics events (even overnight events with school staff) and will come home happy and tired – with a few medals buried in his suitcase.
You will learn that despite both of your boys having autism, they are as different as night and day. One will excel in mainstream classes and will be discharged from special education. One will be enrolled in a special school for students with disabilities. People have all kinds of opinions about these decisions, but it’s none of their business. You will do what is right for your sons.
You will discover autism isn’t the end of the world; it’s just a different one.
Even when they are teenagers, you will go into their bedrooms for a brief moment in the night and watch them sleep. You will marvel at what amazing kids they are, how much progress they have made, and how lucky you are to be their mom.
You will be on a roller coaster ride for years, likely the rest of your life. The highs are exhilarating, and the lows are disheartening. You’ll hold on for dear life during the sharp curves. You’ll scream. You’ll experience the thrill of wind whipping through your hair. You’ll be scared. You’ll laugh. The next day you’ll brush your windblown hair and start over again.
At times, especially in the beginning – you will feel lost. Eventually you will discover you’re exactly where you need to be.
If you asked me a year ago, “Do you think you’ll ever work on a theater piece about the almost terrifyingly broad topic of autism,” I probably would have scoffed, shrugged and gone back to whatever video game I was most likely playing at the time.
I guess I always thought it’d be possible, just not so soon, or in such circumstances.
My name is Andrew Duff, and for the past few months I’ve been working with Andy Paris and Anushka Paris-Carter of the Tectonic Theater Project on their work in progress. The piece “Square Peg Round Hole” (coincidentally, a title that is also a work in progress), has been a personal project of Andy and Anushka’s for close to two years now, and was sparked by the fears, frustrations, curiosities and joys that come from being a parent of an autistic child. As opposed to focusing on one “type” of autism, or even one aspect of the life that comes with it, Square Peg gives everything it’s fair share of the limelight. Schooling, diagnosis, parenting, anxieties, love, everything is considered and represented in some fashion. Because they are parents of children on the spectrum, they are able to capture both the positive and negative moments with amazing accuracy and respect for the material at hand.
Now, I suppose you might be asking why I’m writing about the play. Sure, I’m in it, but how connected am I to the subject at hand? What makes me think I am any sort of authority on the subject? Do I have a sibling on the spectrum, perhaps? Well, I have two siblings, but both are fairly neurotypical.
Actually, I’m the sibling on the spectrum.
It’s a potentially long story, so here’s the short version: I was diagnosed as autistic when I was very young, was put into ABA, and “rose through the ranks” until I was in standard classes with little, and eventually, no support. I even had my IEP, or Individualized Lesson Plan, taken from me, something I personally believed was with you for life. To put it simply, I got “better”.
I found, however, that being “better” isn’t always “better.” I struggled throughout college with the idea, and didn’t know what to do. Many nights were spent walking around the campus, gazing at the stars in the Vermont sky, wondering to myself when I was going to hit that wall of limitation. I sensed it was coming soon, or at least I thought I did.
In an effort to confront these fears, I based my senior work around, well, myself. I filmed a short documentary on the subject, and also made a solo performance based around my life and living on the spectrum. My degree is in video and media studies, you see, but around the end of my sophomore year I was convinced to audition for theater, and it kind of became my focus since. My work got fairly good reviews and hype. I was even interviewed for the college’s radio project, and featured in a senior piece this past year, a year after my own graduation.
I left college in Vermont with a strong sense of pride and faith in myself. As the months went on, however, that sense faded greatly. I struggled to find jobs, found hanging out with people to be more of a chore than before, and just had a general feeling of despair. I remember thinking “how am I ever going to function in this world?”
Eventually, I decided to go looking for help. I posted to WrongPlanet.net, a forum for people on the spectrum, and a site I did research on my senior year, but never actually made a post in. In mid-December of 2012, I made a post asking people how they went about getting jobs in NYC and dealt with unemployment. I also linked them to my solo performance (featured above), in an effort to show them what I was about.
About a week or two later, I got an email from a mutual friend of Andy and myself, who said he wanted to talk to me. The story goes that Andy was browsing WrongPlanet, came across my post, and clicked it on a whim. He, thankfully, found my piece relevant and wanted to contact me. However, I never posted any sort of contact information on the video, so Anushka, in her own words, “internet stalked” me, and found my LinkedIn, which pointed them in the direction of our mutual friend. Next thing I knew, I was meeting him for dinner and discussing being on the spectrum. The conversation ended up going fairly well, and Andy mentioned a workshop in Iowa he was doing within the coming weeks. As it turned out, because I didn’t have a job to go to, I was able to come along on short notice and work with them.
In other words, it was because I was unemployed that I was able to act on this chance. I’m not advocating unemployment by any means, I’m simply pointing out the serendipitous nature of the event.
Iowa went quite well, and a week prior to the writing of the post we presented the piece in NYC in an effort to gain funding and awareness for our work. The interesting thing about working on this piece is that you find it constantly evolving and addressing new issues every time you walk in and work through it. Andy and Anushka have really started to capture what it’s all about, and I’m just glad I get to contribute in some fashion, whether it’s giving my own “expert” perspective on things or acting for them.
Truth be told, I’m not quite sure what I want to do with my life. I want to act, and I want to contribute to the autism society of which I’m a part. Those two are the only sure things in an ocean of uncertainty. For now, I’m going to continue contributing to Square Peg, and take everything else as it comes. And, for now, I’m quite all right with that.