'Well we know where we're going, but we don't know where we've been', the immortal words of Talking Head's 'Road to Nowhere'. For a long time, we had no idea where we were going, but three years ago, February 7th 2009, was the day we found out where we were heading. Three years on, it is all too easy to think about all the things we are still struggling with, forgetting where we have been. But a few things lately have reminded me just where we were a few years ago and just how much Harry has come on in leaps and bounds.
I will never forget February 7th 2009 for several reasons, all of them momentous. The date will be remembered in my household as the day my younger son, Elliot, decided to rid himself of nappies forever. A month off of being three, I believe he knew we needed one less stress in our lives by the end of that day. The date is most synonymous for the rest of the World as being Black Saturday. The day when the state of Victoria, where we were currently living, suffered some of it's worst bush fires which killed 172 people and left hundreds homeless. The heat that day can only be equated to how I imagine standing in a fan forced oven would feel. 46.5 degree heat with strong south-easterly winds. It was a day on which any sensible person would have laid under the air-conditioner with a bikini on, cocktail in hand. We, however, took a trip to Melbourne in a car which kept breaking down on the motorway because it couldn't cope with the heat. Given the temperatures and the smoke in the distance, not to mention the stress of a French car which was clearly less Cannes and more Can't, we would not have ventured outside the front door were it not for the fact that we were on our way to receive the results of Harry's second Autism assessment. And again the date, for me at least, will forever be etched in my memory.
Despite overtones from the assessing psychologist, Sally Rigley, that there were obvious flaws with Harry's first assessment, I had prepared myself to be told the 'worst', that Harry did not have Asperger's. My heart was literally in my mouth as we waited to hear Sally's words after her opener of 'In my opinion...'. Unless you have been in this position, you will have trouble comprehending that I wanted the diagnosis. Having initially been told that Harry 'simply had behavioural issues', Sally's next few words '...Harry does have Asperger's' gave me long sought after answers and I finally knew where we were going. The euphoria of knowing my son wasn't just a naughty boy, of course gave way to grief a few days later. Then it was sink or swim time, so I pulled on my rubber ring, arm bands and flippers. Nobody and nothing, not even Jaws, was going to stop me now.
I, of course, only had a basic road map to my future, the intricacies of which could not have been anticipated and they still can't. I am very fortunate to have recently had a small glimpse into where I am heading courtesy of somebody who has already been there and is still travelling the road. Attending a recent Asperger's conference in Brisbane, I was looking forward to the opening address by Tony Attwood, naturally! The theme for the conference was positively living with Asperger's, and you know I'm a big advocate of seeing the positives of our lives. But the main draw was the second presentation by Katherine Sykes. To the Australian public, Katherine is perhaps unknown. However, if I was to mention that her son is Declan Sykes, fans of the X Factor will know exactly who I am talking about.
It was revealed towards the beginning of the X Factor series that Declan is an Aspie, something which really didn't come as much of a surprise to those of us with Aspie radars and who watched the X Factor auditions. What did surprise us was that Declan not only auditioned for X Factor, but did it so well. Thinking of my own son's anxiety, the thought that one day he could be brave enough to take to a stage in front of hundreds of people, never mind Scary Spice, is inspiring to say the least. Declan of course made it into the top 12 and has a stunning voice which saw him get through to the top 5 of the show. The first live show I watched with dropped jaw and my thoughts could not help but gravitate towards Declan's mother. I could only imagine how proud she must have been feeling at that precise moment, presuming she had come from the same place I was currently in.
Katherine presented her speech with humour, modesty and was heartbreakingly candid. I will be honest I could not contain the floodgates, whilst Tony Attwood was sitting two seats away from me I might add - oh the shame! Katherine calls it 'leaking', I was more of a burst pipe and I thank the person behind me who was clearly a plumber! She had no idea why anyone would be interested in hearing her speak, she was after all, merely the mother of Declan. What Katherine I suspect is too modest to accept, is that us Mums would have been interested in 'Katherine, the mother of a child with ASC' regardless of her son's TV fame. Mothers everywhere want and need to hear the stories of other mothers. It cements the seedling of a feeling that we are not alone, and every time a mother says something that you can relate to, it restores your self-belief a little, the 'it's not just me' sense of relief.
OK, it's fair to say, without her son's appearances on the Australian version of the most famous reality music show in the World, we would not have heard of Katherine Sykes prior to the conference. Naturally, the fact that Declan made it to the live shows on the X Factor gave hope to all us mothers out there with ASC children, that there is life beyond, and we all wanted to know how that felt. But even without these factors, Katherine is a remarkable woman and her story is fascinating. The thought that her son was diagnosed long before autism funding was offered, support groups, if there were any, were few and far between, and books and information on how to help her son were scarce. She raised her son using her own wits and initiative, not necessarily knowing the 'right' way to do it, but she knew her son and, us Mums all know how important that is. The cherry on top of the cake was of course that she did it alone, she had to make her own money, whilst being on call 24/7 for her son.
Katherine and I related on many levels, not least of which was the fact we both have sons who tell us they hate us with disturbing frequency but which we were crying with laughter about. Again, unless you've been there, this is something which may confuse some of you but trust me it's the only way to cope. More joyously was the way we could compare where our children were a few years ago, and where they are now. Declan three years ago was refusing to be touched or hugged, roll on a few years and he's hugging Beyonce on TV, famously more than once! Katherine told me she watched with pride as Declan throughout the contest made his way from the edge of the stage during the elimination, avoiding the group hug, to eventually being centre stage, in front of the camera, allowing others to hug him and hugging others. Katherine leaked on more than one occasion. And here we jump from the X Factor to Finding Nemo!
Recently we were all watching Finding Nemo and it struck me half way through that three years ago, Harry point blank refused to watch it because a scene in the film scared him so much. A scene in a children's movie! Now here he was watching it without flinching and I had to take a moment to marvel at what may seem trivial to others, but to me it was priceless. A few days later, his father was screaming his lungs out on a thrill ride, whilst Harry nonchalantly said it was fun. Barely a year ago, Harry was refusing to go on even the children's rides at our local theme park, and here he was, outwitting his father who quite frankly needs his head reading based on some of the rides he goes on and finds fun! Being able to tell people that your son has watched Finding Nemo may not be as much of a dinner party topic as saying he got a hug off Beyonce, but the enormity of the act remains the same to Mothers of children with ASC everywhere.
Katherine Sykes may consider herself to be merely the mother of Declan, but to all the ASC mothers out there, she is so much more than that. Her story resonated in every parent in the audience at the conference and her experiences cut very close to the bone, save for the teenage years which I am yet to experience, but for which I am now a little more prepared. However, now that I have a rough idea of where I am heading, I am not quite sure whether to hide or move the entire family to Antarctica!
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