Anticlimax or how we made the grumpy man smile

rather ashamed by how I left my (non-existent) readership hanging at end of that last post, suffice to say that the results were inconclusive and showed "no known anomalies" even grumpy geneticist managed a smile, funnily enough on the return visit he seemed younger and friendlier, his parting words were she speaks two languages,ok not in any linear fashion and on an echolalic loop but don't worry so much. um yeah ok. thanks for that. So we stay faithful to the swan.

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.

is it ok to expose M

ACCESS:One of the reasons I am so fascinated by the idea of capturing M in Paola’s images is that as a photographer she seems to have an uncanny ability to shed light on the inner aspects of personality but in the end do I really know so much less about the inner life of my child who can’t process or articulate information than that of my other intelligent and articulate child who like all teenagers keeps his inner life strictly out of his parents sight. MOTIVATIONS/PRVACY/EXPLOITATION/CREATIVITY M is beautiful but it’s a burden when it becomes the focus of what people notice about her, a mask to her difficulties but I think most people of physical beauty use their beauty in a knowing manner with M it’s the not knowing how much she understands the power of it but there is no question she is aware of it, M is 14, if she didn’t have developmental disabilities would we have let her model like her cousin V or perform on stage with adults like her cousin L, or publish her own story like her cousin M, so hard to know, everything is always viewed through the ‘if’ prism. Here’s a fact, we have been stopped on the street and given business cards for model agencies twice obviously we didn't follow up but the point is that this is a child who has always attracted attention, who loves to look both in the mirror and at photos of herself, she may not be able to verbalise it but emotionally for sure she is a full participant in this project. Her outfits are chosen by her, she does her own make-up (unless its for Halloween!), none of the ‘styling’ comes from anyone but her, Paola is making a documentary here not a movie. Paola has known M for a long time, M has known P’s kids since they were born, she is completely, naturally herself around Paola. In my view, Paola, in her work shows her natural affinity for innocence and for the importance of creating safer, kinder ways to live, to soften the cruel edges while thoroughly exposing them at the same time, she wraps the vulnerable in protective layer but one that is gossamer thin and cast at a precarious angle. Her world is one where ’pink dreams’ can still exist. M has that same affinity for beauty, a rose-hued delight in all that surrounds her, I see a clear line running from photographer to subject, there is a place that they both dwell but I do not. I don’t know if it’s because I am M’s parent or simply a difference in world views, tastes, experiences no bigger or smaller than all of the other differences between people, disabled or not. There was a great deal of conflict for me about the privacy issues in letting all of this go out in the world. Wise and clever people asked me to consider the purpose of the project and the motivations of the photographer. They, it should be said, had never met Paola and so wondered I suppose if she saw M as solely a captivating image in the same vein as a beautiful sunset and in turn perhaps felt I was offering up M’s inner life for public view knowing that it could be interpreted in strange ways by strangers . “This is a child with a right to privacy, it’s not about art or creativity” read one piece of advice. So what are we doing with SWAN, Paola and me and M? We are celebrating M, exploring a particular period of time when she is at a vulnerable and difficult age. We are exploring the pressures brought to bear upon young girls made all the more difficult for one who cannot process conceptual ideas. We are exploring all of the wonder and beauty that she brings to our lives. We are escaping with her through play and dance and music and dolls and clothes and make up. Emotionally and hormonally she is a teenager but does not yet read, she has no idea that a span of seven days constitutes a week. She loves pop music, dressing up as Lady Gaga is one of her passions but she will pause in full wig and makeup to tenderly feed and care for her baby dolls and teddy bears. All young teenage girls can possess a Lolita quality that can be deeply disturbing to adults with M in her total innocence the vulnerability of that contrast can be overwhelming. Rightly or wrongly Paola captures that fragile balance between her utter innocence and the fact that she has ‘normal’ interests for her age, we cannot escape the real world, she embraces what she sees and we try hard to protect her, I have no desire for her to be hidden from view or sealed in a bubble either. The well meaning person who cautioned me against the idea that I would allow an art project to be made seemed to view creating art from M’s life as terrible negative but here’s the thing, M has an artist father, she has grown up surrounded by creative people. In her family life art and creativity are hugely important, neither I nor her father have a problem with the idea that one of the defining aspects our family life (having a special needs child who has no diagnosis of any particular syndrome or disorder) would be chanelled into or dealt with through art. It is after all how we make sense of almost everything the mirror you hold up to understand the abstract reflections of everyday. Creating is something M does endlessly, she will paint draw, glue, cut, fold, bake, decorate for hours. For me there is a vital connection between writing and parenting, the need to find the words is a daily struggle but the search for them and processing of them is essential to me. Equally for M’s father the need to paint and create art in many mediums is a lifelong obsession, he is a great Dad but he is also an artist who needs time alone to work and the two are inseparable facts. M’s brother writes and draws so it is no surprise that we would have no issue about participating in Paola’s art as a way of understanding more about M. I don’t know then if the very thing I was warned against turns out to be part of the motivation. Does art have to teach? I don’t think so, does this series of photos have to illuminate the entire world of children like M, of course not. Will it perhaps in unexpected ways let us glimpse at more of her inaccessible inner life I hope so, will it let people pause for a moment and wonder who is that child, why are we looking at her brain as well as her beauty, perhaps. The truth is that there is no way of knowing how people will interpret it. I do know that she teaches us on a daily basis how to live in the moment, to see the world as an enchanted rather than ugly place. Those are the things I see in Paola’s project with M.

out of synch

Some brief background on M from the beginning:. She was born prematurely but not dramatically so, though her birth was fast to the point of madness (19 minute labour) and in spite of no evidence I have never been able to shake the gut feeling that some vital spark failed to connect or was extinguished in that rapid entry, some momentary lack of oxygen etc the possibilities are endless and pointless but in all the years of wondering and searching my mind always returns to that moment when she arrived. She was slow to walk, she never crawled, by three she still couldn’t speak, by four she had a few single words, they tested her hearing, they suggested autism many times, except her clear need and ability to connect to other people threw a curveball that made it very difficult to place her on the spectrum. We got back one report written when she was 4, almost 5 that said she had the cognitive ability of a ten month old. I remember crying at my keyboard while typing an upbeat, joke filled email to a friend about that one, saying oh well what do they really know… I had no idea how right I was. We moved countries so her difficulties in the start of the school were put down to language issues but after a year it became obvious that they ran much deeper than that, it was the beginning of a long, ongoing journey to try and classify M in some medical way. We made the physical and mental transition from the regular school system to the special needs one, we adjusted the whole idea of ‘future’ and watched in wonder many times when she learned to do things that were previously thought beyond her.We had the good fortune of finding a truly special school where she has blossomed and we have found like minded families and teachers, mostly we have had a hell of a lot of fun so don’t let the mention of tears on the keyboard fool you into thinking otherwise. A decade has passed since that devastating report, we have met and spent time with pyschologists, neurologist, psychiatrists, speech therapists, music therapists, wonderful and terrible teachers, social workers, pediatricians, the whole gamut of professionals and in three different countries. We have investigated, tried, flirted with and rejected many alternative therapies, read reams of research, articles, spent far too much time on the internet, the lack of diagnosis for M that would help us unravel the mystery of her mind, is most assuredly not for lack of investigative effort.

SWAN, the feathered kind.

SO the project as mentioned is to be called SWAN, after the acronym for syndrome without a name, can't think of a more perfect title really. I've always had a fascination for the creatures too, when I was little I read and re-read the Hans Christian Andersen fairytale, The Wild Swans many times, on many levels it's quite a horrific tale for kids as most traditional fairy tales are. The cursed brothers turned to swans, the mute heroine who is to be burned at the stake but the flames turn to flowers, so much powerful imagery but the part that struck me was that to save her brothers and return them to human form she must gather nettles and knit them into shirts.Nettles were something I was stung by a lot as kid playing in the Scottish highlands and knitting was something my Granny taught me. She kept a basket in her house and when we would visit her on Sunday, my sisters and cousins and I, were expected to get our wool and needles out and knit, I suppose it was a way to keep 7 wee girls quiet and occupied, feels rather fairytale like itself in the telling some 40 years later but the word Swan triggered a powerful memory for me of sitting on a stool knitting scrappy squares but imagining I was fusing nettles together to transform the swan princes back into boys. If only I could knit the right pattern now to unravel the mystery of M's difficulties, the nettle stings would surely be worth it.

S.W.A.N vs.SWAN

I really should have titled this blog the great delay as apparently 2 - 3 years between entries is as fast a pace as I can manage, same old reasons, not at all convinced anything to see or say here so the urge to pass by rather than sit down and post is an overwhelming one but as mentioned in my last post which was a mere 6 months ago which by my standards is approaching prolific there is a project underway that began as a series of photographs of M but has somehow morphed into something more collaborative. The background is this: Paola is a friend, a very talented friend, she first took a photo of M for her series Growing Up, in it M’s face is obscured by a lamp she is holding, a large disc of light that almost covers her head, to say that Paola has gift for visual metaphor is an understatement and then some. I don't recall now how much time went past between that image and the beginning of Swan, for a while we thought it would be good to have Paola make a series at M’s school as I felt that if she could capture M’s unique difficulty in such a beautiful way then that world of kids with special needs is one that she could shed light on in an utterly empathetic way but for various reasons to do with privacy regulations etc it just became too difficult. Somewhere along the line the focus came back to M and I shared with Paola that we were scheduled to have an overnight EEG exam to observe M’s brain patterns while sleeping followed by an MRI scan of her brain, Paola came along and photographed the experience. In the images she made she brought beauty and understanding into a strange world of medical technology and research as well it must be said as making me laugh when I might otherwise have cried from the stress of tests that have no answers. When I saw those images I realized that while I may never find the words that can help me make sense of all of the wonders and challenges of having a child like M. Paola through her lens captures most of it without a single word. The project is called SWAN the acronym meaning syndrome without a name taken from this website http://www.undiagnosed.org.uk. More on lack of diagnosis in another post