"That must have been so hard for you" she said while carefully readjusting the collar of her crisp white tailored shirt. Those words hung above us like an Alexander Calder installation; primal, structured, floating geometric shapes sustained by my awe and her apathy.
She easily mentioned my son's Autism as though it were a memory, numbed by the distance dismissal provides. She hopscotched through topics du jour with light, balanced words simple and clear. Still, I could not breathe, I could not speak, I could not stop what those 8 simple words started.......
April is Autism Awareness month. Of all months to blog, this in theory should have been the easiest. This time around, it feels different. From the moment I was given the diagnosis the focus was on recovery, or anything close to it. I knew there was no "cure", but I wanted my son to have his voice back, I wanted everything he lost in his regression back, I wanted "him" back. I accepted that he wouldn't be exactly the same, but I wanted him to have a shot at reaching his potential, more importantly, I didn't want that potential to be limited by how others viewed his disabilites. I wanted his potential to be met by how he excelled with his very real abilities. For the first few pivotal years diet, nutrition, sensory, speech, play, occupational, and physical therapies were put into place. Biomedical approaches, ABA, Floor time, RDI, Brain Balance Protocol, chelation, everything done in the hopes that connections would be made, both in and outside of his brain. Circles of communications, opening and closing, Calderesque.......
"If you know a child with Autism, you know one child with Autism"......This is true. Though many share the same sentiments, we parents obviously interpret Autism and it's very individual affects on a family the way different religions interpret the Bible, or different political groups interpret the Constitution. Autism is hard on everyone because you have to come to terms with the scope that it emcompasses, what it means and how it pertains to your family. Autism did not happen to my son, or to me, it happened to all of us. The unwillingness to answer honestly is what leads us to further question....The anger behind many of us is that part of "awareness" is the realization that money is the deciding factor on how your child will get helped and what gets covered up. The trinity group that you are taught to respect growing up, the medical profession, the educational institutions and the healthcare industry are ultimately re-evaluated with every denial of service, or refusal of treatment. Triangular shards cut through space, surfing the air on a Calder Mobile........
"That must have been so hard for you".........It didn't finish...it wasn't cured...it's not in remission...If the first part was trying to wrap my head around it, the second stage for me is trying to wrap my heart around it. For so long I have been quiet about it but I can't swallow the sentiments any more. Apparently I'm full and it's really fattening......It hurts to see everyone outgrow your kid. It becomes more discernible the older they get. In the playground, in the classroom, on the street, on playdates, the sense of solitude parallels the noise, the interactions and the movement. In between there exists a barrier of silence. This crossover that I crave, makes me question if he does as well,or in the same way, or if it's just me wanting this. I'm lost in ideologies, in the philosophical context of what defines normal, where do we draw these lines of what is socially appropriate and why is it that so many "normal" kids get away with behaviors we would never allow our "special" kids to? Just how much do they have to compromise? Why do they have to fully adjust to the rest of the world when it's obvious we haven't figured out a way to be civil to each other yet? What does "independent" really mean? Life skills? I question my own.....Quality of life? Now there's a loaded one!!!! Just as loaded as "appropriate and meaningful"....What is he really thinking? What is he really feeling? How does he see the world around him? I get glimpses, I study him, dissecting every stim, every gesture, every laugh, every random observation, every protest, every joke, every real worry.........knowing full well, that though he may not process everything the same way, he still comes to the same conclusion.......LOVE..........
Where once I described my sons behaviors, his sensory issues, his coping mechanisms to his teachers, to his extended family, to friends, to neighbors, to anyone who came into contact with him, as a means towards understanding, to acceptance, to awareness, now I find myself explaining that much of the new behaviors coming through are typical. His transitions inspire mine. As his expressive language intertwines with his curiousity and his need for self assertion, it becomes clear to me that "independence" is something I am completely unprepared for, emotionally and intellectually. How to begin to prepare my son for a life of purpose, because he matters, is now my new goal. Here is this funny, loving, open, charming, bright kid who struggles to comprehend the innuendos of gestures, facial expressions, social cues. Here is a kid who loves people but the challenge of conversation can intimidate him. There is a world out there that still needs to be enlightened. Our children are not a list of symptoms, of disabilities, a case study, a statistic. Our children are entitled to be seen as whole, as able beings who do have challenges, who are courageous, and who, given the proper supports, can thrive. They are worthy. Sometimes four lines make more than a square or a rectangle or parallogram ......manipulated enough, you get a diamond......
And so begins another chapter. I need to deconstruct to rebuild. I need to seperate the triangle, the circle, the square so that I can appreciate their essence. The red, blue and yellow of it all, the primary, the basic, juxtaposed in a way that brings an awareness to the art in those that process the world in a unique way.... .....
"It must have been so hard for you" she said..........
What she never realized is the harder the lesson, the deeper the understanding
Not to mention the greater the appreciation for good food, good company, good laughs and a good cocktail......................
Its all an art form sustained by a breath of awe................
