When Cooper was 3 years old, he was officially diagnosed with autism. Of course we knew something wasn't quite right since we frequently took part in super scientific playground examinations (you know, comparing your kid to other kids at the playground and then seriously questioning your ability to parent). Nonetheless, there is something super surreal about hearing those conclusive words spoken for the first time. "Cooper displays behavior consistent with Autism Spectrum Disorder," filled us with relief and paralyzed us with fear. Finally, our marriage could find strength again in knowing his behavior wasn't a direct reflection of our pathetic parenting skills. New to us, was the immense stress associated with what this diagnosis could, would, or should mean. Stereotypes filled our minds and the hopes and dreams we had envisioned for our boy faded into the world of impossible.
There are things that keep us up at night (Autism Parents). There are thoughts that creep into my mind while I'm out for a run or sitting in a church pew. Often I will feel a heaviness in my chest and lump in my throat as my eyes well up uncontrollably, and I know it's the emergence of that which lies beneath layers of to-do lists, laundry, and dishes. It's fear and hope and love and more fear. I am overcome with emotions for Cooper. I am overwhelmed by the responsibility God has handed me to care for him. And often this fear makes me want to move my family to the middle of nowhere, to live happily ever after as a family of hermits in an underground bunker. But it's hope (and my fear of Norman Bates) that gives me the strength to dress this kid, smack him on the butt, and send him on his way with a "go get 'em tiger!" every damn day.
His first day of school practically killed me. I put 4 different essential oil blends for anxiety on him and imagined he was in some kind of botanical armor of aromatherapy, safe from feeling anything negative emotions ever (never said I was a normal person). He smelled like a beautiful disaster, but at the end of the long, torturous day (for me), he came home smiling and answered my impatient question about his day with "good". That's it. That's all I would get from him for almost an entire year of kindergarten. Good. My mind was consumed with worry that other kids were teasing him or his teachers weren't being patient enough or he needed a wipe after going potty and just walked out with his pants down and yelled down the hall for one... How would these strangers ever understand him like we do? How would they be able to forgive his awkward movements and silly noises?
As usual, my fears were almost always answered with his success. He adapted. These strangers accepted him but also helped him in ways we could not. Cooper hasn't been the only one to benefit from his release into the world and the incredible community he has landed in either. Sometimes love can make you so accepting of someone's faults that you never allow them to reach their potential. Sometimes love needs to be tougher. We've all grown and pushed past insecurities, fear, and doubt because of Cooper. Communities and educators have done the same. I truly believe that it's our narrow-minded world that needs to adapt to the broad mind of the spectrum. Not the other way around.
A few weeks ago, Cooper's music teacher (he LOVES music, by the way) called me to ask if Cooper could have a roll in the upcoming 2nd Grade Program. I'm not sure my initial response was super normal, however I recovered a few seconds later to have the serious conversation. It's obvious to me that Cooper has some serious skills in both memorization and music, however he HATES large crowds (still has yet to attend any school assembly with his peers) and really HATES chaos and loud noise. In addition to that, when he gets nervous, he tends to behave pretty oddly. I literally had no idea how this would work out... but here it was again, fight or flight? I told her my honest concerns but also agreed that he is incredibly talented and deserving of this success. So we concluded. He would play the Dog in the upcoming "The Cheese Stands Alone," 2nd Grade Musical Program.
He had 4 lines. The paper came home and we practiced, talked about what he was going to do, he got nervous and excited and then we practiced some more. We said his lines twenty times a day for three weeks. He, of course, knew them the 2nd time he read them, but we wanted him to be able to say these words amidst a flood of noise, fear and anxiety. He had rehearsals and I received multiple emails from his teacher stating that she was super proud of him and he was going to be great! But was he? Would he freak out? Would he cover his ears and take off when the curtain opened and all those eyes were looking at him? Finally, the day came to find out and my husband and I were both balls of anxiety. I layered Cooper in another bubble of aromatherapy (he gets the best-smelling kid award for sure), smacked him on the ass, and said "go get 'em dog!" We took our seats among the crowd, tried not to look like terrified psychopaths among our neighbors and peers, and braced ourselves for what could happen. The music started, the feet shuffled in, and finally, the curtain opened.
There he was. In a state of mild shock, hands cupped over his ears, but he wasn't running away! Step one, complete! As the music played and kids began saying their lines, he slowly let his hands down and joined in on the choreographed movements. He knew every move. In fact, he began adding a little something extra to those moves: pure elation! I sat their in shock as I watched our Autistic boy come right out of the stereotype of that diagnosis and move, sing, and perform for a crowd of many in a room full of chaos. Finally, the mic was passed to him, he spoke his lines just as he had the hundred times before and hopped up and down with pure, unadulterated, elation. He nailed it. And there it was, the heavy chest and lump in the throat followed by a flood of uncontrollable tears. Only this wasn't the same kind of emotion that got me in the church pew. This was my body reacting to an insane amount of happiness all at once. I glanced at my husband and his face looked like mine. We were a couple of basket cases in our own little world of trial and triumph, sitting in a crowd of people who likely couldn't imagine what those 4 little lines meant to us, to Cooper. He totally nailed it.
It's moments like this that help me dress him in the morning and shove him into the wolves den every damn day. These risks we take as parents of autistic children can carry a huge amount of anxiety but an even greater amount of hope. Pushing our children out of their zones of comfort, challenging them to greater expectations, and standing by to nurture who they are meant to be is the role we have been handed.