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 Primary School, Parental Exploding Brain Equation

I’m supposed to be working, but I’ve just spent the last 20 minutes frantically googling ‘neon children’s outer-wear’…

No Mini-me isn’t off to an ‘80s themed birthday party (although it would make a change from Frozen come to think about it, and involve better music), no this is just one of the new daily challenges my parental friends and I are facing. Those of us with reception class age children, I should say.

The second half of Mini-me’s first term at primary school kicked off this week, and I’m still not used to the rapidly expanding pile of paperwork, various important diary dates (non uniform, slight variation on uniform, fund-raising, special events etc.) and homework and project related stuff I need to be on top off.

Yes apparently I am now Mini-me’s PA – on top of being her personal chef (yes fish fingers and baked beans count), social secretary, style advisor, washer-woman and maid. And as it turns out I’m not very good at the job.

So far today I have forgotten that tomorrow is her class group’s show and tell day and that it is ‘Be Bright Day’. Namely where she needs to be decked out in some kind of luminous coat, scarf and hat combo that drivers and cyclists can see should she be walking to or from school with me in the dark.

Yes I know it’s a very worthy idea, I just wish I’d remembered so I didn’t have to spend time locating day-glo ear muffs at a shop that’s convenient for hubby to ‘swing by’ on the way to Euston Station. Because no one in their right mind would go late-night shopping with a knackered four and one-year-old in tow.

Hopefully Mini-me’s resident pink hat will do the job. I could ‘customise’ it with a bit of silver foil I suppose.

Yes we’re all still adapting to the ‘primary school chapter’, but the good thing is I know we’re not alone. My brilliant school mum friends are keeping me sane and laughing and long may this last.

So two months along here’s a few new things I’ve learned. Maybe some of them will sound familiar.

  1. You used to think you were late for school in the first couple of weeks, but now you know the real meaning of ‘cutting it fine.’ It involves bringing the car to a screeching halt most mornings, sprinting down the road towing poor offspring behind you and other (more well prepared) parents quickly getting out of your way in the playground as they register the panic in your eyes.
  1. You know NEVER to turn up to school pick-up without a snack of some kind for your child about your person. And if you forget, prepare for whinging, crying and them trying to grab a biscuit out of their best friend’s hand.
  1. You are pathetically grateful to your child’s class parents Facebook group. Without kind reminders from your peers you would be DOOMED!
  1. Your child’s ‘hair repertoire’ is now limited to bunches because they are easy. If Mini-me ever requests a French plait I may have a breakdown.
  1. Forget skinny jeans or heels, the best clothing purchase you have ever made is a decidedly untrendy but useful rain jacket with hood. Looking stylish is now even lower on the list of daily priorities than it used to be.
  1. A good ‘morning routine’ is a day which doesn’t involve shouting from you, shouting from offspring and hubby shouting down the stairs about all the shouting.
  1. That the fact that Mini-me can now read books to Blue-eyed boy is AMAZING. Admittedly the plots are a bit limited so far, but he doesn’t seem to mind.
  1. That you now do more washing than a small hotel. And if the machine packs up you cannot be held responsible for your actions.
  1. That when Mini-me says innocently that she’s ‘looking forward to homework’ it fills your heart with joy. And wonder over how long this is likely to last.
  1. That no matter how soon after lunch you ask, your child will NEVER be able to remember what they ate that day. But they will always remember if they got a sticker for eating it all.

The Primary School Equation: How do you choose?

Am I the only one who’s ever thought that old saying: ‘Your school days are the best of your life’ is a little bit glib? Or at least too black and white?

I have many very happy memories of my own school days but I was also bullied at various points so making sure mini-me ends up somewhere she feels loved, happy and accepted is hugely important to me.

Plus to be honest I can’t quite believe that we’ve actually got to the stage of picking a primary school for my beautiful baby girl – evidently not so small anymore! It all feels like a huge responsibility.

Where we live there’s one main village school that mini-me should automatically get into, which makes things easier and also harder in equal measure. Less stress over choice but more pressure to like it if you see what I mean.

Well last week hubby and I joined a big group of other potential parents on a tour of the school led by the headmistress about who we’d heard great things. First impressions were that she was quietly assured and trendy and reminded me of a ‘PR type’ who might work in Soho (not that you stereotype when you work in the media!)

Hubby was already stressed as I’d forgotten to book blue-eyed boy in for an earlier start at nursery so he was accompanying us in his sling complete with the hacking cough he has yet to shake off.

‘What if he starts screaming? What am I supposed to do, walk off and do a circuit of the school building? How’s that going to look?’ he asked indignantly.

It got the stock response. ‘Um, it’ll be fine.’

Fortunately I was saved by blue-eyed boy’s famous good nature and a few other parents who’d also accessorised with their under-ones. Plus the youngest was working his cuteness to our advantage – trendy headmistress even commented on how lovely he was!

Also BFF was there and both offspring prefer her to us anyway. Mini-me is frequently asking when she can move in…

Anyway us and the other parents were taken on a loop of the school umming and ahhing over the music room and the new library, trying to filter ‘quietly’ into various classrooms where we were followed by many pairs of small eyes as if animals in the zoo.

Quite freaky to think that hopefully next year mini-me will be one of them.

It also, and hopefully I’m not the only one to admit to this, got my competitive hackles up a bit. I found myself commenting to hubby that mini-me is ‘very musical’ so the school would be perfect for her.

Also I was quite pleased with myself for asking a semi-intelligent question about whether parents can get involved with school life, helping with reading etc.

Silly really, but I suppose as a parent you want to be accepted too just like you did when you were at school.

It’s all coming back to me now. My mum running the book stall every year at my school’s autumn fair and dad helping out with various things.

Waiting nervously for them to return from parents’ evenings to see what my teacher had to say about me.

That’s going to be me and hubby soon. Scarily grown up, for both us and mini-me…