Growing up too slowly… or not

The thing about having a child with ‘the A word’ is that on the really tough days it can be hard to see beyond the things your child can’t do.

You try not to do it, you beat yourself up about it and you feel horrendously guilty for falling prey to it, but yes there are times when the fact that your lovely little person can only say a few words and phrases, still looks wobbly on their feet at the grand old age of three and will only eat meals involving either cereal or pasta (or anything beige) that are the things that you focus on.

Rather than the fact they are pointing out what they want more, will fetch a bowl or cup to tell you they’d like a snack or drink, have become confident enough to actually walk for a spell on the school run and have made a special friend at nursery.

It sounds terrible, but it’s something we all do.

With NT (neurotypical) Mini-me I absolutely felt the pressure to start and smash it with potty training when friends began turning up to play dates having ditched the nappies. So it’s not really surprising that I’m finding it hard that Blue-eyed boy shows absolutely no interest in this area whatsoever.

My more relaxed friends tell me to quit worrying and ‘let things happen when he’s ready’. All good advice, unfortunately in my over-analytical tumble dryer of a brain, it’s hard to just let things lie and pick my battles.

I find myself fretting over the fact that Blue-eyed boy is still perfectly happy sleeping in his cot, when some of his pint-sized mates from the baby days are now on their second bed.

I wonder if I should stop giving him a dummy at night time – despite the fact that some NT children I know used one until they were well past five.

I see pictures on Facebook of other children grinning into the camera and it genuinely feels like they are from a different generation to my gorgeous little man.

But down this road only heartbreak and parenting madness lies.

Recently I got chatting online with some other parents of autistic children and their experience and feedback was hugely helpful to me. As was knowing that I am far from alone with all of the above.

One thing a couple of them told me really resonated, and helped me to start looking at things from a different angle.

We all complain about our children growing up too fast, they said – well aren’t we lucky that our little ones with ASD stay in the moment for a little longer than the rest.

When I look back on those long-ago days when Mini-me was a baby I can see myself in her tiny first bedroom singing and rocking her to sleep and it’s almost like looking at a different parent.

I can remember delighting in her first sentences, seeing her cheeky sense of humour emerging almost as the words tumbled out of her mouth trying to catch up with her. But it’s hard to mentally time travel back to those precious, fleeting memories.

Now our almost six-year-old resembles a teenager sometimes more than she does a little girl, so advanced is her confidence, her rebellious streak and her wealth of witty comebacks. And that’s wonderful in its own way.

But our Blue-eyed boy still comically sticks his bum in the air when he sleeps, like they both did when they were babies.

His eyes light up and he toddles across the room to me when I pick him up from nursery.

He loves a cuddle in front of ‘vintage’ episodes of Ben and Holly.

His favourite thing to do is often to listen to me sing him nursery rhymes and then join in.

And he still finds playing peekaboo hilarious.

So when those ‘can’t do’ worries and fears enter my mind I’m going to try to instead focus on the moments that may be long gone with Mini-me, but are happily still very in the present with my beautiful Blue-eyed boy.

And be thankful.

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?  

 

Hairdressing – With A Side Of Honesty

Since having kids one of my favourite things to do is going to get my hair done.

Yes of course covering the ever-thickening grey strands with a healthy dollop of artificial colour is a highlight (forgive the coiffeur humour!) but actually the best bit is sitting down for an extended period of time with people bringing me magazines and hot drinks.

A rarity these days, to state the bleeding obvious.

The thing I’ve never been that keen on about the hairdressers however is the chit chat, the small talk etiquette of it all.

For some reason I get really paranoid that I’m not giving the hairdresser good value in the chinwag department. Do they want to talk? Are they sick of talking? Why do the stylist and customer over there appear to be actual besties when I can’t think of anything interesting to say?

It’s bloody ridiculous, but sometimes I get so tense about the ‘awkward silence’ that I’ve sunk as low as asking my hairdresser about their holiday plans! I know that’s supposed to be their line but there’s only so much conversation you can have about the current state of salon straighteners…

What is even worst though, and I know I’m not alone here, is dragging the kids to have their tresses trimmed. There is literally nothing so stressful – except perhaps making them have their feet measured, or getting them to stop running around in cinema.

Thankfully these days now that she’s five Mini-me has quite taken to it all. Mainly because we’ve started going to a new place where they use ‘princess glitter spray’ and because I let her watch the iPad.

Blue-eyed boy however is another story.

Not only does he HATE the hairdressers, but ‘The A Word’ means that any outing to the barbers is now fraught with even more stress and, well, just basic hideousness.

We start gearing up to it several hours (or days) before actually leaving the house and only then attempt the trip armed to the gills with snacks little man is happy to consume this week, with at least a couple of episodes of Twirlywoos downloaded onto phone in case, horrors!, the Wifi signal doesn’t work.

Once I’ve actually got him in the chair, I then have to plonk Beebies entertainment directly in his line of vision, plead with hairdresser not to obstruct view with brushes etc., have snacks open and handy just in case of need, and all this while simultaneously holding Blue-eyed boy’s arms down so the snipping can actually take place.

And god, the bit where they try to cut around his ears, or use the clippers. Let’s not talk about it or I might start getting emotional!

The sensory issues triggered by his ASD mean that Blue-eyed boy hates certain materials and the feeling of them on his skin, so trying to put on the bib protector thingy is a total non-starter and can cause him real distress.

He also hates having water sprayed onto his hair, the feel of the scissors, the hairdresser actually touching his hair, and any residual noise interfering with his enjoyment of Great Big Hoo and gang. So a fun time is guaranteed for all.

On our visit this week (put off I might add until my poor child was sporting an actual mullet) I decided to try a new tack – honesty. It’s all part of the adapting to ASD you see. I figure I’m going to have to explain Blue-eyed boy’s condition so many times in the coming months and years that I might as well start as I mean to go on.

So when the hairdresser expressed surprise that little man didn’t like the dinosaur cape that usually goes down a storm, and in fact screamed the house down when confronted with it, instead of mumbling something about him ‘having a bad day’ I told the truth.

I told her that my son has autism, that he’s been recently diagnosed so we’re all still getting used to it and that his symptoms on any given day can include: chewing his clothes, having a meltdown if a piece of fruit he ate yesterday is put on his plate, slapping away other children if he feels they get too close and using language sparingly and only when he feels like it.

I said that ASD is actually very common and could even affect up to one in 60 children. And then I apologised if all this would make her job a bit more difficult than usual on this occasion.

Not only did she not mind, she was actually interested. She took account of what I’d said and tried to make Blue-eyed boy as comfortable as possible. Working together we even managed to keep him in the chair long enough for a pretty respectable cut.

So the upshot is that I think I’ll be sticking with this new honest approach to hairdressing – and other outings.

It just probably won’t extend to not stressing out over small talk etiquette.

That Tricky Thing about Not Looking Too Far Ahead…

This Saturday was one of those days that have to be consigned to the parenting dustbin.

One of those really crappy days that seem to last for an eternity and that you can’t ‘shake yourself out of’ no matter how hard you try.

Hey, they happen right?! Not a lot you can do about it.

I won’t bore you too much with the details, except to see it involved a long-planned meet-up with a group of good old friends, a particularly lovely toddler virus, an epic tantrum and the depressing realisation that on some occasions you have to accept that you probably won’t be leaving the house for the next 12 hours.

Now I don’t know about you but since becoming a parent my social life has not so much reduced as dramatically nose-dived.

It’s one of the secrets that you don’t really grasp until reproducing. And then you realise that actually both you and the other half making it to the cinema down the road at the same time with no children sick, screaming or guilt-tripping you into cancelling is a major achievement. In fact a cause for whooping at bemused sales assistant while ordering the popcorn.

Anyway, the point is that when you have something in the diary or scrawled on the kitchen wall planner that you’ve been looking forward to for a while, it stings even more when you have to cancel.

So far not so earth-shattering, but since Blue-eyed boy was officially diagnosed with ‘The A Word’ it’s come to our attention that the acceptance of the odd dustbin day is going to become increasingly likely.

We’re learning new things every day about ASD, and one simple fact is that our little man could very well find social situations large, small and everywhere in between a real struggle for the rest of his life.

I imagine it’s a bit like the nerves you get walking into a job interview. One of the really scary variety with a panel of people sitting across a desk from you.

ASD affects how people communicate with others and how they deal with others socially, and little things that you and I simply take for granted – like being able to read someone’s body language, tone of voice or facial expressions – can become huge obstacles to people on the spectrum.

Blue-eyed boy is working very hard, and us with him, to help him understand, process and use language, never mind learning to interact with others and cope with new and potentially scary social situations. It’s all a rather tall order for a two-year-old but our little fighter is coping brilliantly and taking everything in his stride.

We never doubted that he would.

In return, as well as resolving not to fall into the parent trap of comparing ourselves to others, I’m learning that looking further ahead than a few days or weeks is really not going to be helpful.

The best piece of advice I’ve read from another parent of a child with autism, is that living in the moment is all you can really do without going crazy.

Of course putting it into practice is much harder. I’m a planner, an organiser, a self-confessed perfectionist and I like to know not just what’s immediately ahead of me, but way round the corner as well.

Well the simple fact is that I have no idea whether Blue-eyed boy will ever ‘talk normally’, whether he’ll find it really hard to make friends as he grows up, whether he’ll be accepted socially by his peers along with his little quirks (as I like to think of them) and how he’ll cope with people realising that yes, he is different, but that’s what makes him so unique and special.

And I have to learn to accept that.

Lesson three, of becoming a parent with a child with ASD, has fortunately been a lot easier to stomach.

Namely that if you have good friends who understand, or try to, about our lovely boy’s condition, who accept, embrace and also love him for who he is, it  makes this strange, new world a hell of a lot easier to navigate.

What we’re also learning is that we’re surrounded by an amazing group of people who not only ‘get it’, but love and cherish our charming little man along with us and are rooting for him all the way.

And we, and he, are SO lucky to have them.