Real Joy

     My son's first word wasn't "Mama". He was five years old when he uttered his first clear word.  At the time, we had a koi pond, and we were spending the afternoon watching koi swim around in their bright orange and white scales. Pointing to the fish, I said, "Look, Garret, fish!" He was quiet for some time and then he said softly, "ish" with the "f" so quietly enunciated that it was almost undecipherable. As it happened, part of me didn't believe it because I thought I was just hearing what I wanted to hear. Perhaps I also didn't want to believe it because it wasn't the word that I truly wanted to hear.      

     This life with autism throws a lot of curve balls. Or as a fellow autism parent said before, "(Our) Life is curve balls," in that it is constantly turning things on its head and more. Autism brings us to a place where knees buckle literally and figuratively, displacing one's ego because really it has no place in this particular scheme of things. Autism reveals things as they are-- words as simple as they are but filled with meaning, language beautiful and powerful in its apparent difficulty and complexity in the number of processes it needs to fully operate. 

     Garret is 21 years old now. I've returned to reading him stories. This time, no longer with the adamant purpose of trying to coax words and language out. This time, I read to him for the mere pleasure of seeing his eyes light up at the pictures he recognizes and can name. But most importantly, because he loves the experience of it. It would seem that my ego has taken its place in the backburner obliterated to cinder. Finally, thank God. After all, raising my child isn't about me. At all. He did not ask to be born. I wanted him to be born. 

          One of the stories I read to him now is The Rainbow Fish by Marcus Pfister. He loves the way the fish shimmers with its silvery, shiny scale offsetting the colors of the rainbow. Autism's full name is autism spectrum disorder. Spectrum referring to the myriads of levels of intellectual and behavioral capacities of those diagnosed. How apt it is then that I found this book at a recently opened bookshop in our city at this particular time in our autism life. The story goes on to tell of the most beautiful fish in the ocean who learned that only in giving away parts of his shiny, shimmering scales to other fish can he find true joy. I think back again to the time Garret, may rainbow son said, "Fish" as "-ish" with the softest sounding "f" one could ever possibly imagine. It was a gift in itself that I failed to fully appreciate at the time. Now, I do. I hold it in my hands, place it upon my heart and know its beauty-- how his brain recognized the fish, how his brain allowed him to command his speech center to speak the word. It doesn't matter that his first word wasn't "Mama". It shouldn't have mattered then; it doesn't matter now. What mattered, matters is that our autism life taught me, continues to teach me what real joy actually is-- that everything is a gift. This life of ours is a gift. This is joy, real joy, right here.