Life with Tilly has felt quite straightforward recently. She has had a week off school due to a tummy bug, and then an overnight stay in hospital due to suspected appendicitis, but even through that, it all still felt quite ‘normal’.
But my ‘normal’, as I have realised today, is actually a way of describing how I’ve become more accustomed to living life with a child with special needs. It’s our little bubble. A place where I get on with life as it is, I accept the good and the bad aspects of Tilly’s genetic condition, I don’t over analyse the situation and everything feels like its on an even keel – certainly, emotions feel steady and don’t throw me out-of-sync. It’s a nice place to be.
However, I am still on a massive learning curve when it comes to my daughter and her developmental issues – so now and again, something will inevitably happen that will jolt me out of that safe place, and burst that lovely, safe bubble.
That something happened today. It wasn’t significant but it was enough to make me stumble, feel out-of-sync and re-analyse how life is with Tilly and what her future might be.
It actually started early this morning when I was changing her nappy. It suddenly struck me that “Wow, I’m still using nappies for my 7 year old daughter!!”. A few years ago, when there was both an element of denial and of hopefulness, I thought she would be toilet trained by the age of 7. I mean, 7! That’s only 3 years from being into double figures. Surely she’ll be able to understand her toileting needs by then? Or possibly not, as the case is likely to be.
The second jolt was at an appointment with her paediatrician this morning. It was all going fine, the discussion was progressing as expected, when the Dr suddenly suggested that now might be the time to put Tilly through the screening process for autism. It shouldn’t have been a shock to me because it is a subject we have all been discussing for years. But, in the past, we have all agreed that her developmental issues are probably causing some of her autistic traits, or at least masking them. When she remarked that this probably is no longer the case, it felt like a punch in my stomach.
But why did I react like that? Until I started writing this post, I didn’t understand why I felt so wounded.
I now realise that it’s not just the potential diagnosis of Tilly being on the autistic spectrum – it doesn’t change who she is – it’s that I’ve been knocked out of my safe bubble where I see Tilly for Tilly, and am (potentially) being forced to give her yet another label that society has preconceived ideas about. We were happy to be given a genetic diagnosis last year because, at long last, we had an answer for why our daughter was born with the problems she has had to endure. I felt that describing her as having a ‘rare genetic condition’ gave people enough information, it let them understand that yes, she is a little different – but that is all they really needed to know.
I was happy to be in a place where I simply viewed some of the traits Tilly has as just ‘Tilly traits’ – however, my perspective has already switched. I am seeing her through a different lens – a lens which leaves me watching her intently, analysing her behaviour and wondering if what she is doing is in fact a sign that she is on the autistic spectrum.
I’ve written in a previous post about how I spent the majority of my time as a new mum to Tilly analysing, worrying and googling. Sadly, I think that the time between now and her assessment (which could be months away!) will result in that behaviour returning once more. I’ll be back to searching google like the crazed mum I used to be!
Deep down I know that she is on the spectrum, and always have, but even I have preconceived ideas of what autism is and how it looks. And although I know a few boys with autism, I’ve not yet met any girls. I don’t fully understand the bigger picture.
So I guess I have to figure out how to arm myself with enough information to understand how girls on the spectrum are affected, what extra support is available, new therapies we can try and connect all the dots to give Tilly the best support we can.
Then I have to move on, let the worry and analysis go – and return once again to seeing Tilly as Tilly, rather than a label.
And hopefully I’ll then find that we’re back in that lovely, safe bubble again.