Why my four-year-old son is the bravest person I know

I wrote this piece for the Independent Newspaper and the title’s Comment/Voices section to mark World Autism Awareness Day. I thought I’d publish it here to mark April’s World Autism Awareness Month…

This week I found myself comforting a friend in our local coffee shop.

We were talking about our eldest children, her son and my little girl, and the fact that they are both young carers and wise and compassionate beyond their years.

What brought tears to her eyes was the thought that neither of them may ever have the chance to have a school photo taken with their younger sibling – something that many of their friends have enjoyed and chatted about happily.

Of course it’s heart breaking to think that your six-year-old child can tell you how sad they feel that something their classmates quite rightly just take for granted isn’t an option for them, at least not now. But what really struck me about this situation was that for once I was the one telling another parent of a child with additional needs that things can and will get easier.

April 2nd is World Autism Awareness Day, a fact not lost on the estimated 700,000 people with a diagnosis in the UK or their families. It’s also not lost on me because this August it will be two years since my four-year-old son was diagnosed as having Autistic Spectrum Disorder (ASD).

If I’m honest I’d known for months, years, that there was something different about my beautiful blue-eyed boy, the second baby we’d struggled to have and the absolute image of his Nanna.

Blue-eyed boy was late hitting all of his milestones, skipping the crawling stage entirely and only finally taking first wobbly steps at 19 months. Many people told me: ‘Don’t worry he’s a boy, they’re lazy – he’ll get there in his own time,’ and I’d try to convince myself that they were right, against my own fears and better judgement.

When my husband Geoff pointed out the way our son lined up his toys in perfect rows, flapped his hands like a bird’s wings when he was happy or excited – a classic sign of autism – or struggled to make eye contact with us, I brushed it off and changed the subject.

But after a series of appointments with health visitors, our GP and finally a consultant specialising in social communication disorders, we were told that there was no doubt about it – our son was autistic and the future life that we’d hoped and expected for him would never look quite the same again.

In those early days after he was diagnosed there were tears, long conversations with each other, close friends and family and actually some small relief at finally knowing what we were dealing with. But there was also the gut-wrenching panic of worrying about what this might mean for Blue-eyed boy. Would he ever learn to speak properly? Would he be able to make friends like his sister had? Would he be bullied because of his condition? In the future would he be able to hold down a job, have a relationship, live alone?

These unanswerable questions turned round and round in my mind like a tumble dryer – and then of course there was the guilt and the anger. Why was this happening to my child? Was there anything I could have done to prevent it? Why didn’t I pick up on it earlier? Why couldn’t things be different?

There’s a saying that goes something like: ‘You grieve for the child you thought were going to have,’ and I’ve never liked it because, to me, it’s almost like saying you want to change them. But have I grieved sometimes for the experiences I might never get to share with Blue-eyed boy, for the doors that may now be closed to him? Yes. And are there days when I would take the autism away if I could to make simple things like eating a meal or cleaning his teeth less of an ordeal for him? Absolutely.

What I have found strength in though is how we’ve pulled together as a family unit, and little by little without us even really realising it, we’ve adjusted our outlook as parents too.

In the early days I found using social media incredibly difficult. A photo of a friend’s child simply smiling at the camera or doing something that was a totally alien concept to our lovely boy, like sitting on a balance bike, could reduce me to tears – but now I’ve taught myself to not compare him. Yes I still have days when I struggle, but now I’m proud to shout about Blue-eyed boy’s condition on Instagram and Facebook and document all his amazing achievements.

I used to worry about what I’d do if his sensory issues led to a meltdown on the school run or in the park. Now I happily chat to the parent next to me when he’s struggling to ‘queue’ for the slide and tell them he has ASD which sometimes means he finds it hard to share.

During a job interview where someone told me she was ‘very sorry’ that my son was autistic, I visibly bristled and quickly told her that she shouldn’t be because he’s doing so well.

And six months on from making the very difficult decision that Blue-eyed boy won’t be able to cope at mainstream school, I’m delighted that we’ve secured him a place at the local specialist primary where he’ll get one to one support and they couldn’t give a toss whether or not he’s cooperating with toilet training by September.

Despite only being four, my son is without doubt the bravest person I know. Autism means that just leaving your house on certain days can lead to crippling anxiety, but yet he’s always cheerful and cheeky, with a smile that literally lights up any room.

Friends, colleagues, family and his teachers have all gone out of their way to tell us that Blue-eyed boy brightens up their day, and that makes me feel incredibly proud.

And while I might not be able to predict what’s yet to come, for him or us, I know that the future doesn’t frighten me half so much anymore with Blue-eyed boy in my corner.

 

 

 

 

 

 

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The boy with the blue eyes

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?