Let’s Hear It For The Siblings

When you have a child with additional needs, whatever condition they may have, whatever those needs might be, it soaks up a hell of a lot of your time and energy.

And that means there’s not as much of you to go around as a parent – both mentally and physically.

I’ve been thinking about this a lot recently because it’s hit me just how much Mini-me is having to cope with at just six. Sometimes this makes me sad, but mostly it just makes me really proud.

Mini-me is a chatterbox, a little diva, a performer who loves dancing around the lounge to Justin Timberlake or copying the moves on Strictly on a Saturday night. She mostly seems carefree and happy, as she absolutely should at her age – but the truth is that she copes with much more on a daily basis than many children will ever have to.

She’s loved Blue-eyed boy with a fierce protective streak since the days when she used to pat my pregnant belly. I remember the delight in her eyes when she came home from my parents’ house to find the new playmate she’d longed for had finally arrived.

Since those early days of being parents to two gorgeous children we’ve watched an unbreakable bond develop between them. They play together, squabble together, chuckle together and hold hands in the back of the car every single day.

Their personalities both completely contrast but also complement each other, and Mini-me has undoubtedly helped Blue-eyed boy more than she will ever know with his confidence, his happy character and his love of life and people that isn’t always a given when it comes to the A Word.

Mini-me is years away from being able to walk to school by herself, yet she knows and understand the word autism. She knows it means that her little brother finds it hard to speak, gets overloaded with noises, colours and people sometimes, is still in some ways more like a baby than a three year old and that he might not be able to access all of the wonderful opportunities that lie ahead of her.

If you ask her she’ll explain all this to you, not in these exact words obviously, but her compassion for and acceptance of this life-long condition that now affects all of us is truly amazing.

She also loses out because of the A Word. She doesn’t always get the best of us because Blue-eyed boy sometimes needs more time and attention, she often gets told: “In a minute…”, because we’re doing some task for her little brother and she hardly ever complains.

She is desperate for Blue-eyed boy to go to her school with her, to have her official school picture taken with her brother like many of her friends have in the past few weeks, and the plain truth is that might never happen.

In many ways having a sibling with complex needs will make life more tricky for Mini-me, but I know she’ll also gain a lot from it too. She already has compassion, kindness and understanding beyond her years, and hopefully that will aid her in her life ahead.

In the meantime we’ll just be grateful for what a remarkable little human she is growing into – and get up to dance with her to Justin for the tenth time that day, even if we don’t feel like it. After all she’s earned it.

 

 

 

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A year is a long time in autism

 

The other day I was having a meeting about potential freelance work.

As a home-based writer and editor I’ve had to try to become something of an expert at ‘kitchen table networking’ – horrible, trendy phrase that basically means pitching out what you do to all manner of people you meet in the expectation that some of them might be in need of words for websites or a bit of PR support or have a great story that they’d not only love you to pen for them but want to see in a magazine… (There’s more hits than misses, obviously!)

Over the past year – since we discovered Blue-eyed boy is ‘on the spectrum’, atypical, whatever you want to call it – I’ve also become something of an expert at weaving this into conversation if I need to explain how I fit my work around it.

But when it came up during this particular discussion, and I dropped the A word, the face of the person opposite me immediately fell.

“I’m SO sorry,” they said, as a semi-awkward silence hung in the air for a couple of seconds.

“Oh. Well, that’s okay. My son is actually doing really well,” I replied, in slightly bemused fashion.

I drove home still feeling a tad puzzled.

Is it the done thing to say you’re sorry when someone tells you their child has a specific condition or additional needs? Doesn’t it sound a bit like you’re apologising for their child? Is this exactly what I would have said a few years back before our family’s own autism journey began?

Not that there’s really any right or wrong here, at least to my mind. No the thing that I found eye-opening about the whole scenario was how now, a little more than 12 months after Blue-eyed boy’s diagnosis, it wouldn’t even occur to me to feel sorry that he is autistic.

It’s just always there, an integral part of who he is, the quirky to his character if you like, and 99 per cent of the time there’s nothing I would change about it because the A word goes hand in hand with Blue-eyed boy and will do every single day he’s on this planet.

Of course there are things about it that I could do without. His occasional sensory overload on the school run meaning I end up lugging him to and from the car in my arms reminding myself just how unfit I am.

The fact that even a slight cold can throw off his eccentric eating habits for days leaving us limited food options of cereal, brioche and pasta. All beige coloured, of course.

The lack of extended conversation (three word sentences are EPIC!) meaning that although he’s really popular at nursery, I’ve only found this out by chance because he can’t tell me the names of any of his friends.

But hey, these just make life a little less dull.

So from the little boy currently eating his spaghetti looking out over our back garden and the fields beyond hugely enjoying his dinner entertainment of a tractor (‘ello twactor!) driving back and forth out of the window, please don’t feel sorry about his autism.

By all means apologise if it makes you feel better to have something to say, we appreciate the sentiment – but in this house quirky rules.

 

 

 

 

 

 

 

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.

Compare, Contrast, Combust

You might have noticed (or more likely you probably haven’t) that it’s been a fair few weeks since my last blog ramblings.

It’s been a hectic time, juggling a busy, varied and ‘just the right side of stressful’ workload, the school holidays, other mini life niggles such as a delightful infected wisdom tooth and accompanying balloon face (attractive) and what I have been referring to as ‘family health issues’.

A few posts back I hinted that Blue-eyed boy is currently battling several health and development challenges, and recently the worry surrounding these has started to ramp up. Mainly because I find myself brooding on things more.

Blue-eyed boy has always been a fighter right since his conception.

There was the miscarriage, the awful scan where we were ushered into a private room and told that he might have a chromosomal condition, possibly one that could be life threatening, the invasive tests to find out whether this was the case or whether his heart was weak, the scans at the specialist hospital department and then the ‘all clear’.

Although this was followed by the caveat that in such cases as ours there is always a slightly higher chance of the baby being born with a health issue than what they refer to as ‘the general population’.

Even after this there was the nagging worry that followed us up right the day of his birth and the sheer joy at his arrival that followed.

Now considering I know people whose children have bravely battled cancer, others who have taken rounds of IVF in their stride and others who may not be able to have kids at all, I don’t for one minute think that hubby and I had to cope with that much – but I have always privately felt that Blue-eyed boy is my miracle boy.

And this means that, I suppose, we’ve wrapped him in more virtual cotton wool than we did with Mini-me.

When he was late to sit and walk and never really crawled we worried lots.

When we realised he couldn’t hear and had suffered with bad glue ear for most of his first two years we stressed out loads.

And when he used to cling to us and sob furiously in unfamiliar social situations we were concerned he might never find his feet.

But when he finally took his first tentative, wobbly steps at 19 months we whooped furiously.

When he had grommets fitted and we were told his hearing was now, probably for the first time, back within the ‘normal range’ we celebrated.

And when he started to babble, grow in confidence and even say the odd word, we were almost beside ourselves.

I guess because he has been through a fair amount, it makes every little milestone hurdled that little bit more special.

So now he, and we, are facing the next set of challenges.

The fact that Blue-eyed boy is a fair few months behind in terms of development. The fact that there is a long road ahead when it comes to him learning listening and conversational skills and, hopefully, catching up with his speech.

And the fact that there may be something else to contend with – possibly an autism diagnosis, possible a motor or sensory deficiency…

The good news is that he is doing amazingly well, continuing to battle like he always has. In fact I couldn’t be more proud of my little boy with the big eyes and the beautiful smile.

The thing I’m struggling most with at the moment is all down to my own issues and actually a trap that many parents fall into – the curse of comparison.

I hate myself for doing it, even though it’s only human, but sometimes I can’t help brooding on the fact that other children the same age as Blue-eyed boy are toilet trained, sleeping in proper beds, no longer using high chairs and chatting away with the best of them.

I worry, even though it’s far too early, that he may never get the chance to go to mainstream school or enjoy all the opportunities that Mini-me undoubtedly will.

I wish for a clear diagnosis of his condition so we know exactly what we are dealing with, but other days I dread the thought of it.

Personally I think that no good ever comes of comparing your child or yourself as a parent to others. In my experience it only leads to negative brooding and madness.

Do my children have too much ‘screen time?’

Do my children eat enough fruit and vegetables?

Do my children behave as well as their friends?

Do they spend enough time outside?

Do I shout too much – or too little?

Am I patient enough with them?

Will I ever get the work/parenting balance right?

Blah, blah, blah, blah, bleurgghh…

What I’m going to try to do instead is focus on all the good bits, with none of the lining up against stuff. And not look too far ahead.

And also take the good advice a friend of mine gave me today…

‘Look, if they’re still alive at the end of the day and you haven’t gone insane I consider it a good sign!’

Sounds a pretty good parenting motto to me.