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.

 

 

 

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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.

 

 

 

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.

#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.