Is It Okay to Admit to Hating Autism?

Last week Blue-eyed boy started school. It’s not the school we had thought he would go to but it’s a lovely school with caring staff and he seems to be settling in already.

In his typical laid-back style he mastered getting on the minibus that now picks him up from home and drops him off in the afternoon in about two days, without shedding even one proper tear (unlike me) and according to his teachers is enjoying lessons, playing with other children in his class and adapting to his new surroundings like a pro.

I’d been planning to write a blog post about all this, about how proud he was in his uniform on that first day, smiling at the camera much more than he normally does, aware that this was some kind of special milestone that we, and hopefully he, would always remember.

But it’s been a strange few days so I’m shelving that particular spiel for now.

As a parent it’s always a tricky transitional period when your child starts school, especially when it’s your youngest I think, as the totally carefree part of your and their life is in some ways gone forever, partly to be replaced with reading charts, spelling tests and maths homework – alongside a load of wonderful new opportunities of course.

But with Blue-eyed boy, since his A-word diagnosis there’s been a lot of worry along with carefree bits, and in some ways him starting school threw up lots of feelings that I wasn’t expecting.

It reminded me that in many ways life has changed forever, and the future we thought would be his may now never be. You almost feel guilty saying that when your child is doing so well and carving their own path, but of course it’s natural sometimes to almost yearn for what you’d planned for and expected.

I never thought I’d be sending my son to school still wearing pull ups despite 18 months of hard work trying to toilet train him on and off.

I didn’t think that he’d struggle so much with eating school dinners – unless it’s the days when his beloved pasta is on the menu.

After more than two years since being told Blue-eyed boy has ASD I didn’t think I’d feel a pang that he wasn’t in reception class in the same village school as Mini-me. But I did, briefly.

Now all of this doesn’t mean that I’m not hugely proud of my son, who in many ways has to fight harder to achieve things that other children might find easy. But this morning after witnessing a huge sensory meltdown over a bloody cottage pie of all things I woke up to the dark feeling that I sometimes have that on occasion I really hate autism.

I know this might offend some parents of children with additional needs, because often autism is talked about in terms of ‘embracing’ it. And that if you say you’d like to push a button to take it all away it’s somehow saying you don’t accept your child.

I love my little boy too much to put it into actual words. And I say that as a writer – and I’m definitely a better wordsmith than I am a parent. I’ve never had any illusions about that.

I’ve witnessed first-hand his struggles, his many victories, how hard he tries and how much he loves it when we cheer him on for the next word or phrase mastered, the next food stuff he samples, the activity he unexpectedly enjoys.

But that’s why on some days I hate autism. Why I wish it would bloody do one. Why I’d love to make life just a little easier for my beautiful boy.

And why I messaged my friend earlier, who is in this additional needs parenting boat with me, to ask if she felt the same.

And why I felt relieved when she said she hates it sometimes too.

So there we go autism. We’re doomed to have a lifelong love hate relationship you and me. Sometimes I might ‘embrace’ you, many other times I’ll tolerate you, but for today you can just f*** off! And that’s okay too.

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The Lost Art of Living in the Moment…

I read a poignant blog post recently about holding onto memories of your child when they are long grown and treasuring them as a way to remember to how little they once were.

It brought a tear to my eye, but not in the same way as many other parents it would seem.

For me it was because hours earlier I’d been discussing with some friends who are also parents of children with ‘The A Word’ the perils of potty training when combined with additional needs.

You see Blue-eyed Boy is apparently fine with staying in pull ups until the ages of five, six, seven – who knows how long. But I’m not. I know I should be – I should take the relaxed point of view on things, I shouldn’t push it, I shouldn’t care. But I do.

Sometimes people who don’t have much experience of autism will say things about how nice it is that some kids with ASD take longer to grow up, because they need you for longer, you can keep them close to you like when they were very little for longer. And in a way that’s true, but in another it truly sucks.

When I think back now to all the things I took for granted with Mini-me, all the things I never fully appreciated because I don’t have the perspective I do now – that’s what really makes me cry.

I never appreciated how easy it was for Mini-me to learn to ride a scooter before autism came into my life.

I never realised the pride in teaching your child to look left and right before crossing the road before I had a little boy who simply runs out in front of traffic.

I simply took for granted the fact that life got a little easier day by day as she grew, as she slept more, as we needed less stuff in order to be able to leave the house before I had a son whose different brain activity means he has grown into sleeping like a newborn baby – and we have no idea if he will ever grow out of it.

I didn’t know that having my son eat a packet of raisins would become a huge cause of daily celebration because on some days simply getting him to eat at all is an achievement.

When I left my house I didn’t instinctively notice the level of traffic noise, the number of people, the smells and sounds that might trigger sensory issues for someone. And although I knew my little girl like the back of my hand I couldn’t always read every nervous twitch, every fearful glance the way I can with my Blue-eyed Boy.

I don’t shy away from the future for fear of my lovely boy growing up too quickly, I’m sometimes scared of looking too far ahead because I simply don’t know if he will grow and change in the same way as everyone else.

My greatest wish for him is to be independent, to have a job, to have a girlfriend – or boyfriend, to go to university if he wants, to enjoy the thrill of moving into his own place, to have a few drinks in the pub on a Friday night, to be accepted by his peers…

And that’s why, and I assume other parents of children with ‘additional needs’, try to be content with living in the moment. Because all we want some days is for our kids to untie those apron strings and fly…

To walk out into the world fearless and optimistic and full of hope – and not look back.

 

 

 

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.

 

 

 

 

 

 

New Year Musings and Milestones Worth Celebrating

Let’s face it on a global scale 2017 wasn’t the greatest was it.

Unless you’re a fan of orange-hued ego-maniacs with a bigger love of irrational and grammatically incorrect social media usage (‘Covfefe’ anyone?) than the importance of international diplomacy and the uncomfortable truth that sexism and sexual harassment against women is still a horrific reality in far too many workplaces.

On a personal level many people I know have faced difficult hurdles this year, including bereavement, anxiety attacks, bureaucratic battles that weren’t so much uphill as vertical, serious health worries (both mental and physical) and struggles to cope with difficult news and change.

We’ve had our fair share to deal with as well in the Neat Freak household, and my OH and I have commented infrequently that 2017 has probably been the toughest year of our lives so far – but it’s also been the most rewarding in many ways.

After the initial shock of the A Word diagnosis, now some 18 months ago, we’ve all grown as a family and learned much about what this lifelong condition is, how it’s somehow curiously the same and ever-changing as well as being ever-present, and how it can bring as many joys as it does difficulties.

A lot of what we thought we knew about the future has altered and we’ve had to learn to accept (sometimes grudgingly) that when autism affects a member of your immediate family it’s easier to take things a day at a time and not look too far ahead, even if occasionally that really hurts.

As a mum I’ve always hoped that my children will be able to pursue their chosen path in life, with many doors and possibilities open to them, but with Blue-eyed boy I’ve had to accept that his autism may mean some things are more difficult for him.

As someone who was bullied at school I fiercely vowed a long time ago that no one would ever pick on my kids, but I’ve had to swallow the fact that Blue-eyed boy will probably be an ‘easy target’ for unkind people who prey on the little quirks and differences that others fortunately celebrate. I’ve had to learn to grow a thicker skin.

And hardest of all, we’ve had to come to terms with the fact that Blue-eyed boy may never be able to attend mainstream school and that, even though this was the right  option for us and Mini-me, the best one for him involves a place at the local special school – at least for the next couple of years.

But what we’ve also learned is how the A Word shakes up your view of the world around you in glorious kaleidoscope technicolour, and how things you once took for granted or viewed as ‘little’ can suddenly be the ones that light up your day.

Things such as your child using new words and stringing several of them together, doing a simple jigsaw puzzle by themselves and beaming with pride when you praise them, dividing numbers into odds and evens leading you to wonder if one day they’ll be a ‘maths genius’ and watching your two kids play brilliantly together because as well as being a fan of Barbie’s Dream House the eldest sibling is also a carer at the age of just six and kind and accepting beyond her years.

2017 was a year of many firsts – a new specialist pre-school, many new friends, new understandings and knowledge and a dawning realisation that we’ll never stop having to battle the local council and fight for our child.

2018 will no doubt bring many new challenges, highs and lows for us and others close to us. But with the support of our family and good friends hopefully we’ll all come out smiling the other end.

And if all else fails Trump may get impeached. Fingers crossed on that one.

 

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.

 

 

 

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.