There is a sense of calm that has descended over our house, I feel it’s been creeping up on us for a while. It feels reminiscent of staying up all night and then suddenly the dawn starts to break and it takes you by surprise and suddenly the fingers of daylight start to spread and the world feels completely different to how it did during the darkness; less scary and more beautiful. Well that’s pretty much how it feels in our house at the moment, it’s a warm comforting feeling and now I know that feeling is acceptance.
Acceptance that Anna does, in fact, have autism. I don’t say that with any fear now, or dread or a feeling like I’m talking about somebody else’s child because Anna is Anna.
I have found, in order to get to the acceptance part, we’ve had to undertake one hell of a journey and I can unequivocally say that it is the hardest journey I’ve ever had to take. It’s been less than a year since we were initially told of the potential that Anna ‘may’ have autism and, as a family, we have all come such a long way in that time. At times, this journey has tested the very mettle of our beings and we have had our courage pushed to the absolute limits. We’ve gone through all sorts of emotions, from the initial denial to a weird sort of grief I guess; grief for the life you thought your child would have and not really understanding what sort of life they will have, but then, for me anyway, having to quickly pull yourself together to realise that this is the life they have, there is no parallel universe where things are different (unless of course you can prove me otherwise of course) and that you have to help your child to realise their full potential but most of all to help them believe in themselves and their abilities.
Acceptance has started to dawn on us and it has filled me with hope. That probably sounds strange, but it fills me with hope that we can help Anna have a wonderful life and help her to find her place in society.
It has given me the courage to care less what people think and what people might say, and goodness knows I spent far too long worrying about that. You see, the truth of it is that I no longer feel like a bad mother. Because I did. For a really, really long time.
I could never understand why Anna wouldn’t settle as a baby during the day, no toy has ever held her attention for longer than a nanosecond and why, despite millions of hours of worrying about it, until recently, Anna has never really followed a simple instruction or ever appeared to listen to me.
Over the last 3 and a half years, I have had everyone give me their advice from ‘she’s strong willed’ to ‘she’s your boy’ (I find the latter the most idiotic to be honest, of course she’s not my boy, she’s quite clearly a girl and to suggest that only boys are adventurous and inquisitive is ludicrous). I also couldn’t understand why Anna liked climbing so much, preferably out the window, or why she’d run off and never attempt to come back. Or why I was permanently operating at Defcon 2. And now I know.
I have realised though that my parenting style has and does need to change further because what we know as the ‘conventional’ and generally accepted style of parenting doesn’t work for Anna. Anna needs me to adapt to what she needs, when she needs it and Anna also needs a Mummy who is a really good detective; able to look for the clues that suggest what might lie ahead, and I don’t just mean in the years ahead, but mostly in the next 10 minutes. Anna needs me to be the parent that she needs, not the parent that I thought I was going to be and to be honest, it feels liberating. Liberating in the sense that I can throw off the shackles of what a good parent should look like and sound like; there is a time that I would’ve tried to have intervened in a meltdown, but now, I just stop and quietly wait next to her. It’s over quicker that way and once it’s over, it’s over, forgotten about and not to be reminded of. And yes, I expect that if you know me then you may not always agree with how I parent, but I do what’s right for my children and it can be one huge feat of juggling.
Anna is and always will be my normal, because Anna is normal, normal for Anna just like I am normal for me and my goodness I have my quirks, many of them being eccentric.
I’ve found the most important thing is to let Anna be Anna, just in the same way that I let Anna’s big sister be herself. I don’t want to change Anna, she is who she is, she’s quirky, fun and most of all, happy. So when Anna decides to lick the hand rail on the railway bridge on the morning school run because it’s covered in ice and it makes us late for school, I shan’t be looking for an alternative excuse as to why we were late, I will instead choose to keep my sense of humour (I may however need to start carrying a mini hair dryer with me, no one wants to call a paramedic out for a frozen tongue!).
We are awaiting diagnosis but there is no doubt in my mind, or in those of the medical professionals that we work with now, that that diagnosis will be one of autism. It’s not what I thought we’d come up against but here we are. I don’t think of it as a tragedy, a challenge yes, but definitely not tragic and it’s just taking us along a different path. So it is a choice; we can either embrace it, and find a way to ensure that Anna lives a happy and full life to her fullest potential, or I can spend the rest of my days looking for a cause or a cure, both of which will absorb all of my energy and neither of which will be very helpful to Anna right now.
I also don’t think of it as a label. Autism is as much a part of Anna’s personality as anything and I don’t want to try and separate the two. Autism forms part of Anna’s identity and I think we need to be respectful of that. So when Anna does something and somebody asks ‘is that because of her autism?’ I can honestly reply ’I have absolutely no idea, maybe she just likes licking ice on the handrails, who knows’. Instead I see the diagnosis as a passport to access the right help, right now.
There will be decisions to make about schools along the way and all we can do is do what is right for Anna, now, in that very moment. Anna is a little person already and I’m conscious that it’d be very easy to concentrate on how Anna will be in the future without seeing the wonderful little girl that already stands before us. I think Shakespeare was talking about Anna specifically when he wrote ‘though she be but little she is fierce’.
This journey reminds me of one of those books I read when I was younger, where you had to decide what you wanted to happen next, without knowing what the outcome would be. I remember one that said ‘if you want to go back the way you came turn to page 112, or if you want to follow the path through the woods go to page 99’. I’d take the road through the woods any day, because if I get scared, I’ll just wait for the sun to come up so I can get my bearings again so I can continue this journey.