It has been a month since I wrote the first post in this blog – and in that time I’ve struggled to find a way to connect my thoughts with concrete sentences, so overwhelmed by appointments, anxiety, information and insomnia have I seemed to have been.
But what happened next is a really important part of my story. This is the part of the story where I got to decide – for myself, for my family, and (unavoidably) for my son – just how much of our story we share with others.
By starting this blog I had already decided that sharing is something I need for me. Keeping the blog anonymous suggests I’m not sure that the completely open sharing is what my son needs. And yet my son’s story will be shared widely over the next few months as a large team of experts comes together to work with him as he transitions into mainstream education. I’m already seeing how easy this aspect of managing a diagnosis will be to get wrong.
“Stop talking”, my son often says to me these days. It’s not the talking per se; it’s the content of the talking. It took a few months to realise that it’s when I talk about what’s wrong, about what’s not working, about what’s worrying me in regard to anything (but especially as regards him) that my little boy begs me to just keep my thoughts to myself.
And on entering yet another specialist’s office, I know this is how he feels as I’m asked to start (again) at the very beginning….
Each week I see a very small number of private music students. The three I see on a Monday are teenagers I’ve known since they were each 5 or 6 years old. All three of them are terribly bright, and one has a sibling with special needs. They’ve known my son since before he was even born; I decide to share with them (at their lessons 4 weeks ago) where things are at.
“It looks like he’ll be diagnosed with Apserger’s”, I tell my Year 11 student. She claps her hands and says “oh yay!”, and she beams excitedly at me. In this instant I realise that this particular diagnosis will hold different social nuances for people of different generations. “That’s a really cool thing to have,” she continues to enthuse, “and if the kids at school know that that’s what he has they’ll all treat him really well cos they’ll understand he’s dealing with different problems to ones they deal with.”
She also adds positive comments regarding his sense of humour and his good looks, and I know from reading lots of autism blogs these are the kinds of comments that aren’t helpful to parents of children on the autism spectrum, but I’m too new to the game, so I accept, with enthusiasm, all compliments aimed my son’s way.
A couple of days later I had a rare interstate business trip for meetings with an organisation I have worked with for over a decade. I’m not an employee as such, but I work with this company so frequently that many of the people there feel to me like family. The colleague I have worked with most closely over these years has a child almost exactly the same age as my son, so we’ve shared many an anecdote and parenting challenge over the past five years; I got straight on the phone the day before the trip to her to tell her that it seemed that Asperger’s was what we were looking at with my son.
My colleague’s response was simply a more sophisticated version of my Year 11 student’s “yay!”: “that’s fantastic news, now you can get on with the right treatment, your son will have support at school”, and so forth. I was thrilled – my friend and colleague was absolutely on my wave length – a diagnosis is about finding solutions, not about passing a life sentence. And she also understood that this diagnosis explained a lot of things about how hard I had been finding parenting my one child and how this had been impacting on my work.
By the time I was getting out of the taxi at the front door of the business premises, my colleague had quietly shared the news with those at the company who would benefit from knowing. Arriving for my meetings and being greeted with understanding and compassion was deeply moving, and I headed back to the airport at the end of the afternoon knowing I had the support of the people I work with in prioritising my son’s developmental needs over the coming months/years (while still working on our exciting projects together!).
I have a friend whose teenage son was diagnosed with Asperger’s rather late in his primary school years – we now have something in common that neither of us would have even thought about five years ago. Another friend has a child with Down’s Syndrome, and is working through transition from school to work – again, we now have conversations based on unexpectedly shared experiences. And there’s another friend who …
In short, what happened next was that through sharing my news (both fearful and hopeful) I was met with extraordinary support, understanding and optimism from friends, colleagues and students alike. I don’t know what I was expecting, but I know it wasn’t this. Is it that autism (and Asperger’s, specifically) have been so widely discussed in the community that people really do get it? It is that Asperger’s is seen by many as code for smart and quirky (although with a propensity towards a fixation with trains)?
Whatever it was and is, I appreciated this solid week of encouragement. And I was going to need it, because we were about to hit some serious snags in the socially appropriate behaviour category, enough to make the school principal ask me if I’d considered home schooling…