KNOWING NOT KNOWING

SWAN :The very name of this project is all about the lack of a diagnosis and the advantages and disadvantages of having no easy answers or way to explain M’s difficulties. The text below was written as we were waiting for the results of genetic testing that we had reason to believe may have shown chromosomal damage of some kind or evidence of some kind of genetic reasons for Ms difficulties. KNOWING NOT KNOWING Writing this on eve of going to genetics appointment, we have waited 16 months for these results, wondering if we will have to change the name of the project, the SWAN may be about to have it’s neck wrung after all. Out in the hallway now, thudding heart, trickles of sweat, rising panic that will make an idiot of myself and forget every word of Spanish I know because I’m nervous. Weirdly transported back to the days of M as a toddler failing to meet all the benchmarks and starting the weary process of investigations, always wondering if my own inadequacies in some way impacted her difficulties, the logical part of me knows this is utter nonsense this displacement activity of blame and justification, I can’t catch a ball, I fell off a stationary exercise bike for gods sake, of course my kid has difficulties with coordinaton.. but it’s the secret fear its my fault, and that the genetics will reveal the magic bullet of information at last, if not mine then why why why,a voice I haven’t heard in such a long time and thought had buried but here I am wondering once more about my oppositional footwork as I wait to enter that office . So last time we were here almost a year ago when they took the tests, the geneticist was straight out of central casting for some tv hospital drama, tall lean, messy grey hair, sharp, attractive face and utterly condescending manner. Tableau completed by the nervous young female interns perched nervously by his side. The younger looking of the two looked on the verge of tears when he slammed the desk with his hand and had a full on hissy fit when I failed to produce a full set of Ms medical records –eh? I was told to bring her for a blood test never occurred to me (naively) that I needed to bring a ten year case history, of course in the esprit d ‘escalier I had a rousing speech in perfect Catalan to deliver asking why he had to turn what is clearly a stressful appointment for any parent into an intimidating confrontation, he was so theatrically tortured by my inept attempts to explain why I was there that thankfully rather than reducing me to tears like his intern I instead let out a huge guffaw of somewhat inappropriate laughter instead which had the fortunate effect of stopping him in mid tantrum so he then abruptly switched gears and gave me the full charm offensive instead. Truly surreal encounter first time around and had him mentally filed under condescending professionals best avoided until today when I find myself once again in his waiting room waiting to find out if there are any secrets to be unlocked from that year old vial of blood that has been all the way to California and back. Whether it’s good bad or no news at all I hope he at least keeps his temper this time. Just in case I have my little how dare you speak to me like that speech written in Catalan in my pocket, been practising it in my head all morning, its like going to the Oscars with your thank-you speech pre-written just hope I don’t have to practice my happy loser face too.

Hierarchies

I once had a debate about this with a friend after he had been diagnosed with terminal cancer, he felt strongly that there is no hierarchy of suffering that although his entire life was in countdown that he had a duty to still give his full empathy to person who was grieving their own recent loss of a loved one but for the person complaining about their allergies not so much! He highlighted for me a very weird set of emotions about suffering and comparisons and perception. In the school world of disabled kids it ultimately mirrors any other school life but with the unifying comfort of being all in a community that doesn’t judge achievements and for the main part offers only support. But I live in the real world, I have another child, I have to engage socially so how do you listen graciously to your friends tales of how hard it has been for their kid to get into their first choice of university when your kid can’t write their own name, I’m not so unpleasant or bitter a person that I can’t feel joy for my friends genuinely nice kids and their achievements but if I’m being brutally honest there is always an underlying twinge of what.. sadness/jealousy/anger ? maybe all of them that M will simply never have that problem. The crucial part of parenting a child like M is acceptance that your child is not a problem to be fixed, a standard to judge by, a puzzle to be solved, a comparison to be made, it’s why the lack of a diagnosis while fascinating to me is not a problem. Find the joy that is always what it comes back to. fotografica.com/2013/05/fotografo-captura-universo-especial-de-su-hijo-autista-en-proyecto-fotografico/ I was sent this link by various friends and saw it shared by several of M’s teachers, initially I was captivated by this series of images that a father had made of his autistic son but then felt weirdly let down when I read a more indepth interview with him describing his kid who goes to a regular school and gets good grades but who has nonetheless been diagnosed as ‘on the spectrum’ so the more I read, the less magic the images held for me, for sure they are arresting and beautiful but, for the parents of I suppose more severely autistic boys like the ones M goes to school with, I wonder if their admiration for his ability to capture their childrens affinity for small enclosed spaces, sensitivity to noise, fascination with light, the love for trains and organized lines will be touched by that same twinge I mention above when they read of the good grades and collaborative process between father and son, where they discuss the set up. The boys I know in this world would never be able to function at that level so something made me feel momentarily cheated but only in a fleeting sense, the old hierarchy at play again and sharp lesson in perception. I need to be aware that this project will stir up similar emotions and that it is quite ok if it does, those pics ultimately are unquestionably the work of a parent trying to understand his son, in the same way we try to understand M.