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?  

 

#We’reStillWithHer

Last night as Mini-me and Blue-eyed boy were getting ready for bed I started having a chat with my lovely girl about what would prove to be a momentous day – for all the wrong reasons.

It went a bit like this…

“Tomorrow when you wake up hopefully something amazing will have happened?”

“What? Will it be about chocolate Mummy?!”

“Um, no, better than chocolate. If things go the way we’d like and all our friends would like you’ll be going to school with a woman having gained the most powerful job in the world. That’s really great isn’t it.”

“Why Mummy?”

“Well it means that if you work very hard and treat people with kindness and respect you can grow up to be literally anything you want to. If you wanted you could be Prime Minister of this country.”

“Um, okay… Can I have the iPad for 10 minutes before I go to sleep?!”

Well, it would be a bit hard to expect a five year old to fully grasp the importance of what was, until a few hours ago, a seemingly very real possibility.

The terribly sad thing though is that now Mini-me may not grow up knowing Hillary Clinton’s name, or body of work, or 30 years of service to the American people.

She will of course be all too familiar with a certain orange-hued idiot who whipped up the entire globe into a frenzy over joking about sexually assaulting women, made highly questionable comments about women and people of different races in general, and appeared on a national debate stage without, to my mind anyway, saying much of substance at all.

Unless of course you think the best way to defeat Isis is to have a ‘really good, effective policy plan’ but not tell anyone any of those all-important finer details because then you’ll be, what was it, giving the game away.

Oh and immediately getting rid of affordable healthcare for everyone in your country.

And building a wall to keep out ‘rapists’, and banning an entire religious people from your shores etc etc

Today I, and many, many people we know, feel as despondent and despairing as we did months back on June 24. But it’s even worse than that.

Instead of telling my girl that Hillary Clinton has achieved the near impossible, I can only tell her that it was, in fact, impossible.

I could tell her about the ‘victory’ of the politics of hate, division and fear. I could tell her that America apparently isn’t ready for a woman to run its country. I could paint the picture of a man who got into office in all probability on the basis of promises he now can’t keep and a nation of people irrevocably and violently pitted against each other.

But I’m not going to.

Instead I’ll choose to tell her that sometimes we have to take a different path than the one we hoped for and thought would happen.

I’ll tell her about the woman who, whatever your view of her, tried her best to be a symbol of hope against a vision of hate and isolationism.

I’ll show her videos of Michelle Obama speaking eloquently and with passion and pride and hope with her that maybe she will stand in four years’ time.

I’m still hopeful that when Mini-me is nine she can watch, like I did back in 2008 when Barack Obama made that amazing speech, history being made for all the right reasons.

Because yes we can, we still can, if we keep on believing.

 

 

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.

Just Call Me Superhero School Run Mum…

It’s official. I frickin’ HATE the school run.

What’s not to love about always, ALWAYS being late. Sprinting down the road with coats, bags and offspring trailing behind you, as other parents are already returning to their cars?!!

It’s the equivalent of being lapped I tell you.

It’s got so bad that I actually now frequently refer to the school run as ‘Mummy’s Walk of Shame’. And I’m pretty sure I’ve been mentally blacklisted by the head. Poor Mini-me…

Now what is so difficult you may ask about getting pint-sized people up, cleaned, dressed, fed and out? And I totally get you. Other parents seem to manage perfectly well. Many of my friends (some with three or more children) seem to manage perfectly well – so why the hell can’t I get my arse in gear and do the same?!

It’s a question I’m continually asking myself believe me. Often I congratulate myself on having a few minutes to spare, but then before I know it the clock is mocking me again, Mini-me is shouting up the stairs about my continual lateness and we screech the car out of the drive for today’s thrilling and slightly sweaty obstacle race.

The other day, as Mini-me quizzically surveyed her stressed mother from the back seat, she announced: “Mummy, if I was a superhero I could make sure we got to school on time every day. I could fly us there, and you could hang off my leg.

“Or, maybe you could be the superhero and that would mean we got there on time.”

Wishful thinking Mini-me, but what the hell…

Here, in the spirit of what I should be aspiring to (and Mini-me’s current obsession with dressing up) I give you the manifesto of Superhero School Run Mum. Curse her!

 

  1. Superhero School Run Mum is not fazed by inclement weather. She leaps puddles in the style of Greg Rutherford, and never forgets to pack spare socks for soggy offspring.

 

  1. Superhero School Run Mum never looks anything but well put together. Her ponytail is always sleek and she has never once sported ‘visible t-shirt sweat stripes under bra’.

 

  1. While for others the clock may sneer: ‘You should have left three minutes ago and you’re still not dressed’, Superhero School Run Mum can actually turn back time, and even enjoys a hot beverage pre 9am.

 

  1. You will never find Superhero School Run Mum lying on the bedroom floor swearing like a sailor while trying to force her legs into skinny jeans straight from the dryer in the style of a slightly ageing overweight sausage dog. No, she breaks in her denim the night before and has never heard of ‘styling out a muffin top.’

 

  1. When Superhero School Run Mum’s other half asks where his shirt, wallet or sanity is, she would never dream of replying: ‘How the f*** should I know. Do I look like your mother?!’

 

  1. Shouting is something you will never hear from Superhero School Run Mum. Her house is like something out of The Waltons, even at 7am. And as for kicking the car door, or muttering repeatedly under her breath: ‘I hate the sodding school run’, why it’s unthinkable.

 

  1. Superhero School Run Mum’s offspring eat a proper breakfast that includes all the major food groups. Gwyneth’s latest cook book takes pride of place in her kitchen, Nutella is banned and no one mentions the iPad before school, let alone uses it for bribery purposes…

 

  1. Superhero School Run Mum’s friends wouldn’t dream of chuckling about her lateness. Indeed she is known for arriving earlier than everyone else at the school playground and can always be relied upon for her soothing company.

 

  1. Not once has Superhero School Run Mum got all the way home and then realised she is still carrying her child’s book bag – and then had to make a return trip in torrential rain.

 

  1. Superhero School Run Mum is always the best source of knowledge for dates, school trips, homework deadlines, charity events, clubs and non-school uniform days. And she has never once ranted over sorting out something for Show and Tell.

 

Personally I think we should shoot the b****, but each to their own…

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.

The New School Rules

So here we are three days into the first week of ‘back to school’ and it’s becoming abundantly clear that things aren’t what they used to be…

Forget the reception classroom home corner – the days of Mini-me playing Mummies and Daddies with some poor unsuspecting five-year-old boy could be over, or at least numbered.

You see we’ve entered the ‘grown-up’, slightly more structured world of Year One. Which could be good news for Mini-me’s male classmates, who she seems to rotate in order of who she fancies marrying on any given week.

I’m reliably informed that you instruct the ‘lucky’ recipient of your affections of your plans to get hitched – and then watch as they sprint across the playground. Which is good news for the other half bearing in mind that he says boys are not allowed until she’s 27.

Anyway, it looks like Year One is going to be a steep learning curve for us parents too.

Here’s what I’ve swotted up on so far – perhaps you’ve found the same…

 

  1. Your offspring will no longer cry as they line up at the start of the day. You in fact will be the one shedding a few stray tears, because ‘Don’t they look grown up…’ (cough, sniffle.)

 

  1. Your child will start mentioning actual proper lessons like ‘literacy’, which will weirdly remind you of the time you asked your gran to help you with your algebra homework and she just looked vaguely panicked. Is it possible your kid will soon be asking you complicated questions about verbs?!

 

  1. On the same note you will answer the question: ‘Mummy, what’s dividing’, with something that would not have satisfied Johnny Ball. (Remember him?!)

 

  1. You will be amazed that your child can not only tell you what they had for lunch but is also happy to chat for a couple of minutes about their day. You put this down to it being the first week of school and presume that by Monday it will revert to: ‘Can’t remember. Can I have another snack?’

 

  1. You are proud of the fact that you have been on time for three days in a row. Hopes that this will continue into week two are of course fruitless and soon you will be back to sprinting down the road and trying to vault the playground fence in a time of 36 seconds while towing your poor offspring behind you.

 

  1. You’ve started wondering about things like ‘mixed ability sets’ and what exactly your child will be doing in their ICT lesson while hoping that they don’t reveal to the teacher their iPad addiction to Horrid Henry.

 

  1. Talking of Horrid Henry, you’ve tried to justify the fact that you ate dinner in the same kitchen as your child last night while both plugged into your own tablets with thoughts that they ‘really need some chill out time’. (Otherwise known as parent rediscovers the Cold Feet box set.)

 

  1. Although you’re not enjoying the unseasonably humid weather you kind of hope it stays that way so you can get some wear out of Mini-me’s two new summer dresses (which don’t need ironing.)

 

  1. You feel guilty about the fact that your friend told you their house was eerily quiet and they were missing their child, while you secretly revelled in the silence…

 

  1. You enjoy looking at all the obligatory ‘kids in uniform on front step’ piccies on Facebook and remember with amusement the many years when it REALLY bored you senseless.

 

  1. You have a long and most enjoyable coffee outing with your close mum friends and thank god that ‘therapy at the school gates’ is now a daily fixture once more.

Juggling with Melted Balls

We’ve reached the ‘Holiday Hump’ in the Neat Freak Household.

As in everyone is in one and not only are some of us counting down the days until school starts, it’s now officially okay to mention this fact in hushed tones to parenting friends on the same wavelength.

After all nothing makes you feel more guilty as a mum than to hear someone say they are embracing the sheer joy of every single precious family moment, while you’re ‘cooking’ (hiding) in the kitchen furtively watching Gilmore Girls on the Kindle.

(The iPad is of course being monopolised by pint-sized family members.)

And nothing makes you feel better – or perhaps it’s just me – when another mum tells you: ‘I cannot bloody wait until September 5th!’

Anyway the mood has soured a little more this week with the arrival of soaring temperatures.

Now don’t get me wrong I like sunshine as much as the next person, but personally I prefer warm to sizzling, and slowly melting while fighting with Mini-me over the need to slather her in sunscreen at 8am isn’t my idea of a good time. Or hers.

Bless hubby though, he bought me a lovely family calendar for the kitchen – you know so I can keep on top of four peoples’ schedules like an (unpaid) PA and (most importantly) his beloved West Ham fixtures.

I may have slightly overreacted when I noticed that it was made by a company called ‘Organised Mum’, with a fetching logo of a smiling mother juggling a large number of balls.

‘FFS!’ I texted BFF. ‘Are men incapable of writing on family planners?!’

To my mind it’s the same flawed pigeon-hole thinking as those ridiculous toy manufacturers who assume that all girls like pink dolls and would never want to play with racing cars.

Now clearly men are not incapable, and the other half would probably happily take charge of the family schedule.

It’s just that I have nicer handwriting and actually know important dates that don’t involve a team of overpaid footballers doing battle with Scunthorpe United, or whoever it is they are playing this week.

No it’s the Holiday Hump coming into play.

That and the fact that hubby sent me a ‘helpful’ email itinerary for departing on our much-needed cottage holiday earlier, along with a delightful text reminder to pack everyone light layers…

All too soon I, and all the mums I know, will be back to having to stay on top off a multitude of dull daily details, such as whether there are enough clean socks to last the week, what inanimate object Mini-me has chosen to talk about in show and tell (‘No! Not another Shopkins!’) and when I need to start stapling silver foil to something for the probably quite likely occurrence of ‘Space Mufti Day’.

And that’s a good thing – after all it means we’ll all have survived the summer holidays in one piece.

It would just be nice if someone could turn down the heat a little and remember to chuck a super-sized bottle of Gin for me in the car tomorrow along with the rest of the packing.