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My son’s autism diagnosis was my lemon. Writing an award-winning play about the challenges and joys we faced in raising him was my lemonade.
I am the mother of four wonderful sons. In 1993 our eldest son, Geordy, was diagnosed with autism when he was only three years old. We were young and unknowledgeable about what this diagnosis would mean for him and us. We love Geordy unconditionally, always have, always will, but it would be a lie to say living with autism is easy. Raising him has been a roller coaster of emotions. We have experienced tremendous joy and pride, along with grief and even terror. When Geordy was young he would often wander off. His body was that of a child chronologically old enough to reach locks and scale fences but had the mind of a child who did not understand “stranger danger” or how to cross a street safely. Many times he was brought home by the police, who had been dispatched to find him, or by good Samaritans who recognized a child this age should not be walking along the highway. We lived through food aversions, disordered sleep and violent tantrums.
We also lived with exhilaration and pride as new developmental milestones were met. We were astonished by his ability to decode words and patterns. Geordy began to read at 18 months. He walked at 8 months. He had a quirky sense of humor that seemed to take hold of the hearts of his teachers and professional staff members who work with him. He has a singing voice like an angel and a flair for the stage. Theater gives him words to say, so he doesn’t have to come up with his own. His ability to memorize and project make him a natural thespian.
Geordy changes the lives of those who are privileged enough to know him. His brothers have an awareness and a sensitivity to differences and diversity way beyond their years, because they have a brother with autism. The gifts he has given us and those around him have been boundless. As my mother used to say, “If he didn’t have the autism, he may have been somebody different and I would miss him. “ No truer words could be spoken when thinking about who Geordy is and what he means to us. Yet, as his mother it is impossible for me to resolve that my child will always be vulnerable. I could list off all the things we’ve gained from having Geordy in our life, I must continually remind myself and others that Geordy’s autism is not about me and what I have gained. If life takes its natural course, someday I will be gone and Geordy will still be living with autism. It is not okay that he is vulnerable and always will be. It is not okay that there are experiences in life his autism robs him of, including independence. So although I understand that he has autism and that is a part of who he is, (and who he is, is remarkable and wonderful) as his mother it is counterintuitive to say, “I wouldn’t have it any other way.” It just is what it is. Life is muddy. Life is grey. Geordy has autism.
We work to make sure Geordy has the best and fullest life he can. I have always been an advocate of inclusion. Geordy went to school with typical peers and attended camp and recreational activities with typical peers. Now that he is an adult, inclusive opportunities are harder to come by, but we still make sure he is an active part of his community.
In 2005 I wrote a play called, Autistic License. It is the autobiographical account of our family’s journey living with autism. I was motivated to write the play because unless I was in a room with other parents living with disability, I felt unseen. Even the finest professionals could not truly grasp what it means to live a child with special needs. When people learned that I had a child with autism responses ranged from pity, to thinly veiled horror or that ever classic, despicable platitude, “G-d gives special children to special parents.” All of these responses rendered me invisible. Here’s the deal: I am really proud of my kid. I love him. When someone expresses pity or aversion because he’s my son, that hurts. My kid is pretty damn fantastic and I don’t need pity because he’s in my life. On the other side, the notion that I’m some kind of saint because I’m raising a kid with a challenge was equally as offensive. I didn’t sign up for this, and it’s hard and at times heartbreaking and I’m anything but special. Not to mention that one does not have to be special to love Geordy. If you put me on a pedestal then how do I get my needs met? How can I possibly live up that expectation? What happens when I fail, as I so often do? I get angry, I’m tired, and I feel depressed some days. I wanted people to hear me, I wanted people to see me, and my family– all of us.
I decided to tear down the walls of my house and let people see what this life really is: the struggle of my life along with the beauty, the joy, and even the humor.
Autistic License won a spot in the Illusion Theater’s Fresh Ink series in 2005. This was a staged reading for emerging work. The response to the piece was so strong that Illusion put it in full production in 2007. Autistic License went on to win one of the 10 best plays of 2007 and was nominated for a National Theater Critics award for best new play. The response to the run was so great that the Illusion Theater created a tour for the production so the show could be taken across greater Minnesota. The tour ran for five years. Autistic License was featured in the 2010 edition of American Theater Magazine and his produced in theaters across the country. It was also put on film and has traveled to film festivals. It won best educational film in 2010 at the International Family Film Festival in Burbank, California.
What is really unique about this show, is my husband, who is a professional actor in the Twin Cities, stepped into the role of his son, In doing so he was able to understand Geordy in a way he hadn’t before. The process of playing Geordy along with feedback from fathers with children with autism, who attended the show, healed much of my husband’s grief in a way we never imagined. Our other boys saw that the audience was full of families just like their own and that their brother’s story touched hundreds of people, and that healed them too. Through this experience we all were changed forever, for the better.
The most remarkable thing that occurred from Autistic License, was in 2010, Geordy stepped into the role as himself. When the play originally went into production, my husband and I argued as to whether he should even see the show. The play required re-enacting behaviors Geordy had long outgrown. Did we want to remind him? My husband feared that Geordy would think his portrayal of him, was making fun of him. In the end I felt Geordy had a right to see his own story. He loved every minute of it. He never questioned why there was play about him. I suppose it’s a function of his autism that he sees himself as the center of the world, why not center stage? To have Geordy play himself was a leap I never intended to take. A youth director who had worked with Geordy in the past approached me about producing the show with Geordy as himself. For two years I ran away from the notion, until I saw a young man in Texas who has autism play the role. I saw how empowered he was by it. I saw how proud his parents were to see him play it. I remembered an old adage, “Nothing about us without us.” Like everything else in life, I thought Geordy had a right to do it.
Blank Slate Theatre in St. Paul, Minnesota produced Autistic License with Geordy as himself and his younger brother played his sibling. During rehearsal that moment in the script came where he had to act out a long gone behavior. I braced myself. He did the scene as written, acted out the behavior and stopped on cue. It was like his way of saying, “I know what this looks like, and I don’t do it anymore. “ Even though Geordy wasn’t aware of it, that was a cathartic moment for us both. The production was comprised of a fully inclusive youth cast and it played to sold out audiences. We knew we had something very special, so we put it on tape and it is now purchased by individuals and organizations who live and work with autism.
I wrote Autistic License because it was burning itself out of my gut. I never expected it to be produced, nor did I imagine that it would grow legs and travel the way that it has. I am continually humbled by the outpouring of support from audiences and the letters I have received from parents and grandparents telling me this is their story too. This play would not have been a success if Geordy was not the wonderful real life character that he is. Geordy’s life as told through Autistic License has brought greater understanding and appreciation for disability. He has made a positive imprint in this world. No mother could ask for anything more.
To learn more about Autistic License go to www.autisticlicenseplay.com