It’s been a shamefully long time since I blogged on here. Been prioritising the paying gigs and all that, but when I originally set up Neat Freak Mum I swore I wouldn’t be one of those writers who launches a blog and then lets it slowly peter out… So, anyway, hopefully it’s onwards and upwards from here.
This week is World Autism Awareness Week, which is an event particularly close to my heart because it’s now some seven months since Blue-eyed boy was diagnosed as being on the autistic spectrum.
Since that day we’ve all been on what’s known as (in X Factor-speak) an ‘emotional journey’, have learned a lot, met some great new people – doctors, therapists and fellow parents of autistic kids – and adjusted somewhat to the changes The A Word has brought and will continue to bring to our lives.
Some days are hard, some are very hard, some are amazingly upbeat and some are downright hilarious. The main thing is we’re all getting there, Blue-eyed boy is doing brilliantly and his lovely sister is his biggest champion and couldn’t love or support him any more if she tried.
One of the biggest things I’ve personally learned as an ASD mum is to try not to compare my boy to his peers, as it’s in almost all scenarios very unhelpful. I’m also learning that many of the associated difficulties that come with coming to terms with an autism diagnosis are, for want of a better phrase, my emotional baggage.
For example, the fact that Blue-eyed boy sometimes doesn’t get invited to birthday parties might leave me in tears but he isn’t REMOTELY bothered. After all when strange venues and unfamiliar social gatherings heighten your sensory anxiety of course you’d much rather be at home reclining in your favourite bean bag while watching Peppa Pig!
With all this in mind I’d wanted to try and write something that explains how my son views the world in his own unique and remarkable way. Something that might go some way to capturing what life must be like for an autistic child.
I’m sure the following ramblings will fall very short but here goes…
I’m the boy with the blue eyes.
When you meet me for the first time you’ll probably think I’m just like you, that there’s nothing different or special about me – but wait, look a little closer.
Perhaps you’ll think it’s rude that sometimes I look straight through you or cannot meet your gaze – I don’t mean to, it’s just that for an autistic child making eye contact can be emotionally excruciating.
When you get dropped off at nursery or school do you sometimes feel a bit nervous? Well times that by 10 and that’s how I feel every single day of my life. Just walking into a room for me can be like entering the most scary job interview ever, and occasionally I break down because it’s all so overwhelming.
Think I’m lazy because I make Mummy carry me on the school run, despite the fact I’m a big three years old now? It’s only because the sights, sounds and smells of the people, noise and traffic can be like a horrific disco light show going off in my head leaving me dazed, terrified and bewildered. You try coping with all that before breakfast!
Wonder why I only play alongside you rather than with you? Or why I might lash out if you take a toy away from me? My ASD and all its associated sensory difficulties make it hard for me to socialise and make friends and I need order and routine to cope with the world. I really hope that one day I’m surrounded by a group of good friends who understand me. There’ll need to have patience and perseverance of course but I promise you I’m worth the extra effort!
Do you sometimes feel like laughing at me if you see me rocking backwards and forwards or doing something ‘odd’ like touching the same two coloured balls in the same order 50, 60 or even a hundred times? I know I might look strange but these little coping mechanisms are how I calm myself down and make sense of the world, so instead of chuckling to yourself at my expense maybe take the time to try to understand. I’d really appreciate if you could.
Assume that ‘The A Word’ will limit my abilities and mean I can’t reach for the sky like you? Don’t you believe it!
Autism simply means that my brain is wired slightly differently to you, but it also has wonderful benefits. I have amazing levels of focus, concentration and attention to detail. I’m very logical and clever with numbers and letters. I’m very loving and I try to do my best and fit in as best I can because I’m a perfectionist.
If you give me the chance I’ll shine brightly and achieve great things – just like Einstein, Mozart, Andy Warhol, Tim Burton and many, many more.
I’m the boy with the blue eyes. Now aren’t you glad you delved a little deeper?