Uncommon Parenting 101: Lessons I’ve Learned About Surviving and Thriving

 

There’s no doubt that raising a child with disabilities can change you. I’m no subscriber to the belief that ‘special children are given to special people’, nor that having a disabled child automatically adorns a person with a Pollyanna-esque gratefulness and wonder.

It would be fair to say that the experiences along this uncommon parenting pathway can shift your centre of gravity fundamentally. But learning to navigate this path, and find your way along it with a spring in your step, can take some practise and sometimes determination.

When Orange was tiny, I didn’t want to be on this path. So for about eighteen months, I still hoped that he would be fine. Without any firm diagnosis, and with plenty of developmental ‘catch up’ time in front of us, there was still room for a small chink of hope that we weren’t really on this path at all. That one day all my fears would be let go as unfounded.

The reality was that many of the things I was afraid of back then did indeed turn out to be on our path. In the first few years of Orange’s life, we rollercoastered head on into some of my biggest fears. Non-walking child – tick. Non-verbal child – tick. Special school required – tick. The big one – epilepsy, seizures that stop your child from breathing – tick. And I hadn’t even anticipated the things that would be most anxiety inducing; negotiating the education and social care systems to get him what he needs to have a normal life.

Even in my darkest moments, though, I never wanted to back myself into a corner through fear or anger. I was not going to be the person asking ‘why me?’, nor the one in denial, or embarrassment.

To me, the ultimate ‘failure’ and loss of control would be to have felt aggrieved at the unfairness of it all and let this overcome my world view. Even though I had no idea how I would do it, once I knew our lives would be different I always wanted to embrace it. To turn challenges into opportunities and to find happiness and fulfilment right where sadness or isolation could have easily set up camp.

So I had to adapt. To find creative ways to establish some sense of control. To feel a little bit normal in what felt like deeply unusual circumstances.

I’m still learning, of course. And I’ve also learned that our circumstances aren’t so unusual after all. Which also helps.

For those of you at the beginning of this path I won’t pretend it’s an easy one. But I will say this.

You can survive things you might have thought impossible.

You can thrive in a life you might have thought unpalatable.

And you are most definitely not on your own.

You are human, and that means you’re really good at adapting. It’s what we do. What I’m about to share here is just a few of the things I have learned along the way. It might not be for everyone but it’s what I would tell myself if I was doing this all again.

You can choose. It’s completely ok to admit this might not have been the life you wanted. It doesn’t make you a bad person. So you can let go of that guilt. But you can choose whether to hang on to the sadness that your lives, and your child’s life, might not fit the vision you had in mind.

Life is unpredictable and if it wasn’t this, there would almost certainly be some other challenge round the corner that would throw best laid plans off course. You can choose to embrace life’s unpredictabilities or to be blown about by them. That doesn’t mean denying that life will sometimes bring sadness, grief or regret, or that any of us might have more than our fill of bad luck, but that you don’t waste the good times wishing your life was different.

 

You do need help. I’m an introvert. I’m also fiercely independent. I don’t do asking for help or showing vulnerability very well at all. But there have been times when I couldn’t have coped with a situation without the help of others. Figuring out the statementing process and securing the right school place for Orange would have been impossible without the help of wiser, more experienced SEN parents. Jumping in an ambulance with a non-breathing child and not having a kind neighbour step in to care for his sister. Maintaining a career without the help and support of family and the right childcare and respite network.

I couldn’t manage any of these situations without help.

So don’t hold back in seeking out help. Online, in groups, at school, at work, or within your own family and friends. Find it and nurture it. You will find that you can give as much as support as you take and this will make you feel good and useful too.

Learn to recognise anxiety. I didn’t, until very recently. Last November in fact. So almost six years into this uncommon parenting life. Before then, I just stuffed it away by over-filling my days with an impossible number of tasks and washing it down with enormous boxes of Maltesers and Kettle Chip chasers. This seemed like a pretty successful strategy until I was close to burnout, my jeans no longer fit and I stopped wanting to leave the house.

So don’t do that.

Listen to yourself, find a healthy outlet for negative emotions and nurture gratitude. I thought it was deeply cheesy at the time, but one of my Christmas stocking fillers this year was the ‘Five Minute Journal’. I don’t exaggerate when I say it has been life changing.

Preserve and create energy. Because you will need it. I won’t lie. Lifting, carrying, changing and feeding a full-size child is physically demanding. Advocating for your child’s educational, housing and equipment needs with your local authority – who you won’t want in your life at all but you will find are a necessity – is mentally and emotionally exhausting. Surviving an emergency hospital admission, or waiting around in wards and hospital waiting rooms for medical appointments or diagnostic tests is anxiety inducing.

These things can’t be avoided. And they might be more frequent that you would like.

In the first few years I treated these moments as being in ‘crisis mode’, that I could get on track with healthy eating, exercise and better sleep habits when those times passed so it was perfectly ok to stop at McDonalds on the way home or to stay up late watching Netflix and drinking wine like some kind of special reward.

Only those times never really passed. So I spiralled into an unhealthy pattern of eating crap, going to bed late and sitting about on my arse.

This one’s most definitely a work in progress but I am feeling so much more balanced and energetic in the last month having started the Eight Week Blood Sugar Diet. Next stop, exercise…

One step in the right direction

Maintain your friendships. Sometimes you will feel like you can’t. You’ll feel that your life is different now and how could they possibly understand. They won’t always get it right. But give them a chance. They are your friends for a reason. You may find that the people who support you day to day may change, but your long standing friendships will give you a sense of normality and a connection to yourself ‘just as you were’ that you will find you want to come back to, again and again. It will keep you grounded and connected to the outside world. This is a good and necessary thing.

Switch off. Mindfulness meditation was recommended to me as a way of managing the looping lists and invasive mind-patter going in my head. It wasn’t for me but I have found that writing and walking most definitely are. Preferably by the sea. Find your thing and make sure you do it. Your brain needs the space.

 

Feeling a little bit like a dickhead and hoping it’s worth it

I’ll be honest and say I’ve shied away from writing about this for a really long time. For fear that everyone else is just getting on with it and hasn’t needed some kind of survival strategy to see them through. That I might just sound like a massive dickhead. Perhaps I do. But if it helps just one person, I’ll take that.

Neither beginning nor ending be…and other lessons.

The conversation went something like this:

“2016. What a shitter hey. You know I’m really looking forward to the new year just to see the back of this one.”

“You can’t blame the year for all the shitty things that have happened.”

“No, no you can’t. But as humans we like to compartmentalise and sometimes it is healthy and natural to want to draw a line in the sand.” 

“I just got sick of hearing ‘it’s because it’s 2016’ when something bad happened. It’s stupid to blame the year and it devalues the actual thing that has happened.”

“I’ll just be relieved when this one’s over, that’s all.”

And so 2017 has begun and the world has heaved a collective sigh of relief. Hasn’t it? Haven’t you?

No?

The start of a new year often brings with it the anticipation and excitement of new beginnings and possibilities and the closure (satisfying or otherwise) of a chapter complete. Some sense of change or of progress. Of time being on our side again.

And yet this time feels different.

I see people all around me who have begun 2017 not with fresh-faced wide-eyed optimism or gung-ho determination but instead with a cautious hope and gentle stoicism.

Perhaps this is just what happens when you are nearing 40 and life experience has brought with it a few more knocks along with the years?

Perhaps it’s what happens when we see humans all around us causing destruction or making decisions we think are dangerous or stupid?

Perhaps it’s what happens when a generation of baby-boomers’ kids, for many of whom there was always something bigger or better each year as globalisation took off and economies, property and job markets boomed, have now grown up and realised that there isn’t so much, anymore? That those bigger, better life experiences, dreams, houses and things are harder and harder to reach for more and more people?

Perhaps we’re at a collective societal turning point, or perhaps I’m on my own here but for the first time ever I didn’t feel that new year sparkle. That fresh wave of excitement that anything is possible and that it’s going to be a good year, this 2017!

My year.

Your year.

Our year.

Because you can’t guarantee a good one any more that you can predict a bad one.

Nothing in life is certain, after all. Orange has taught me that. He has taught me that the unexpected can happen to anyone. He has also taught me that some of the very things I thought I would be most frightened of in life, I’m very capable of dealing with. That some of the things I thought were scary aren’t scary at all and that even in proper white knuckle, heart-pumping life and death moments I can still rely on myself to do the right thing at the right time.

Orange has taught me to never assume and to always have hope. To feel the fear and do it anyway (with the exception of roller coasters and zip wires, that is).

So why, as I sat on the sofa in a post-Christmas cheese fug could I not feel that fresh-start excitement, that ‘clean pages of a book waiting to be written’ feeling I’ve always felt at this time of year?

As I sat and pondered, my mind freed up by two weeks off work and a body surrendered to the sofa through sheer weight of Toblerone and Stilton alone, I realised what I was looking for was something else entirely.

On the wall next to me was a photograph. One of those enormous canvasses that was so fashionable circa 2010-2012. A black and white image of a family, our family, sitting among the wild grass and sand dunes above Gwithian Sands in west Cornwall.

Not a particularly flattering photograph of any of us, my inner critic would say. Two slightly flabby, tired parents wearing absolutely terrible rain coats (spot the Londoners who had to make emergency practical outdoor wear purchases on holiday), a grumpy, chilly toddler and a six month old squished tight into a baby carrier he’d much rather not have been in, thank you very much.

We’ve certainly had our more photogenic moments.

But there is a story behind this photograph that explains why it deserves its place on our wall and in this post.

It was 2011. It had been ‘our 2016’ before we knew what a 2016 was.

For us it was the year that we felt all the fear but hadn’t yet learned that we could do it anyway. In love with our newborn son but so deeply afraid of what was happening to him, or not happening, and why. To what it would mean for us, as a family, and our lives that we had built.

It was the year we knew we would run out of money if we carried on as we were, as Orange’s appointments meant work was an impossibility and, at that moment, for the first time ever we didn’t know how we could earn any more.

It was also the year that our home was broken into and tens of thousands of pounds worth of our belongings were stolen. My left hand, in the photo, without its sparkle. Sold, probably for drugs. Our home, still ours but somehow not.

Emotionally brittle from hospital appointments and tests that left us more fearful not less, bruised from the bully-boy interviewing of an insurance loss-adjuster who clearly thought we were frauds, and apprehensive of a house sale that would save us from bankruptcy, our lives as they had started at the beginning of 2011 were unrecognisable. Uncertain and with no real plan ahead.

And yet we had hope. Hope for the future, whatever it might bring. Hope, not in abundance but  in adversity.

At this moment, there was no clean slate. Just a multitude of unknowns. We didn’t know where we would live, how we would live, or even how many of us there might be in that future ahead.

But there was hope.

And when I look back at that photo now I know I could tell that younger, fearful and fragile version of me that we were right to have that hope. Without it, I wouldn’t be sitting here writing this now in our house by the sea in the place that we love.

So as the first week of the new year cranks up its gears, not a whole lot differently from the last, and the uncertainties ahead are personal, professional and global all at once, for a great many of us, all I can say is to hold on to that hope.

Even when you are flying by the seat of your pants or baby stepping one foot in front of the other to survive.

Even when self-belief and circumstance fail to show up on your side.

Here’s to a hopeful, healthful and fulfilling 2017.

With love,

K xx

What’s your why? #whyirunldn (Well, not me…)

Watching the London Marathon on the television as a child, I always used to think it was totally amazing that a human being could run 26.2 miles. It seemed like such a super-human feat when I was six. And thirty years on it still does. Which is precisely why it’s Mr K rather than me heading out there tomorrow morning with a six figure number strapped to his chest, an electronic tag on his shoe and vaseline in interesting places.

I often used to wonder why people did it? Why volunteer to put yourself through that? Blisters, chafing, awkward toilet trips, hmm, no thanks. But as I got older I started to understand why people challenge themselves to their limits and sacrifice their own comfort for the good of others.

And then we had Orange.

And then I was grateful to all those tens of thousands of runners who determinedly put one foot in front of the other for mile after mile after mile. And I began to realise that events like the London Marathon are so awe inspiring not just because of the superhuman physical and mental challenge, but because it brings people together.

It is people at our best. Regular, common or garden folk challenging themselves to do something super human, very often for other people who need help.

Every one has their own reason for wanting to run the London Marathon. Because it’s on their bucket list, because they entered the ballot for a laugh and got a shock when the pack dropped on the doorstep announcing ‘You’re IN!’, because they are an athlete, because they want to prove to themselves or others that they can, in memory of a loved one, or because they are raising money for a charity close to their hearts.

The reasons for running are many and varied but for us, for Mr K, it’s because having Orange has opened our eyes. Before we had Orange in our lives there was a whole world we didn’t understand, because we thought it didn’t apply to us. But it does. It applies to anyone and everyone in humanity.

Anyone and everyone could, one day, have a disability. Or a child with a disability. Or a parent who becomes disabled in later life. Anyone and everyone could, one day, become a carer. And while life is easier today for people with disabilities in the UK than it was even five or ten years ago (big up to the DLR for the wheelchair lifts and the Excel Centre for the Changing Places toilet by the way), it can still be a very hard place to be.

In our family, we don’t seem to like to do things the straightforward way either, so of course it should be no surprise to us or anyone else that in having a child with severe and complex disabilities, we also happen to have one who has no diagnosis for his condition. We have absolutely no idea why Orange has the disabilities he has and just about every medical test he has ever had (there have been many) has come back to say he is ‘normal’, whatever that means.

On 29th April 2016 it is Undiagnosed Children’s Day, led by SWAN UK, the small but growing charity that supports families like ours who have an undiagnosed child. It is no exaggeration to say that without SWAN UK we would not be able to cope with all the uncertainties and difficulties that come our way because of having a disabled child who has no diagnosis. With no diagnosis there is no prognosis, no known future, no pathways of care in the NHS to follow and no known programmes of therapy that can help. Everything is an unknown.

But we are not alone. There are thousands of families facing the same challenges. The daily challenges of disability but also the additional load of uncertainty that comes with having no diagnosis (disclaimer: people with some diagnosed but rare conditions face this uncertainty too).

And so, that’s our ‘why’.

Why wall

Today, Mr K took Orange over to the Excel Centre to get registered for the Marathon. While they were there they took a little video about their experiences and Mr K’s reasons for running London. Have a watch. And perhaps have a think about how you can help.

What’s your why?

Everybody can help to normalise disability, because it’s something that any of us can encounter in our lives, and probably will, in some capacity. It’s a small thing perhaps but a smile, instead of a stare, could change the face of someone’s day.

And the bigger thing is that all too often it all comes down to money. Disability is expensive. Support for people with disabilities is expensive. Support for their families and carers is expensive. So we would like to extend a massive and heartfelt thank you to everyone who has sponsored Mr K so far to run the London Marathon to raise money for SWAN UK.

Thank you.

For now, we are all tucked up in bed in our hotel overlooking the river. Significantly more comfortable than last time I sat up in bed looking out at this view while incarcerated in St Thomas’s postnatal ward, and more recently, in actual labour, with said Orange.

Vaseline is on hand, tagged running shoes are by the door, and a last minute dash for nipple band-aids has been made.

So night night from us, and go, go Mr K! See you at the finish line with a cold pint of London Pride.

To sponsor Mr K in the London Marathon 2016 click here!

So, who wants a holiday then?

If you’re in the UK and you’ve looked out the window pretty much any time at all since 2016 began (or what feels like since the dawn of time) you’ll have noticed that it has been grey, rainy and distinctly dismal. And there’s nothing like a bit of dreary British weather to spark off a little holiday browsing.

It’s been over seven years since we went on a holiday abroad together. It’s something we have never done since Orange arrived, partly through fear of what may happen while we are abroad, partly because other financial priorities have prevailed and partly because it’s been so long we’ve got a little decision phobic – if we’re going to fork out for a holiday abroad after so long, it had better be a damn good one, but where to start?

When I was growing up, we didn’t go on what I would call normal holidays. Most families we knew would choose a week in France, perhaps Spain, maybe the States or the Caribbean or a winter ski trip. Whereas our family holidays were distinctly more rustic and, er, character building. Usually involving tents and fields, often in force ten gales. Or if we were lucky, a really ancient house with mice that ran around in frying pans in the night or lobsters that arrived on the front doorstep in a bucket, still alive, ready for us to literally boil them to death and hack them to pieces with a hammer.

Often there were lots of very long walks. Not because they were supposed to be long, but because someone thought it was a good idea to go off-route and promptly got us lost. Pretty much always in the rain or a thick blanket of fog. And nowhere near a pub.

These holidays obviously struck a chord somewhere because now we live right on the shoreline in Cornwall so we can experience these interestingly windswept meteoroligical conditions and wildlife encounters any month of the year.

2015-03-23 10.46.46 HDR

One of the lovely things about living in Cornwall though, is that when the sun does come out, we are right here to enjoy it. We have been very lucky and had some cracking summers since we moved here and I guess this has allowed us to fall into a certain malaise about actually booking a holiday.

2015-04-06 12.25.13

Image for PR With a View

We’ve been able to avoid the difficult questions brought about by Orange’s needs such as special assistance at airports and whether the accessible rooms in the hotel are up to scratch.

The thing is, though, we want our children to experience the world just like their peers do. But browsing for holidays knowing you need to factor in an Orange is not straightforward. My hopes were high two weeks ago when I found a beautiful resort in Greece. Ikos Resorts – everything I would want from a holiday. A little luxury, eco-credentials, great food and enough activities to swerve couch-potato-dom. We really liked the look of their bungalow suites with private pool. Spacious, perfect for all of Orange’s kit. Private pool, spot on for two little water babies and two exhausted grown ups. Stylish too. Excited, I got in touch.

“Sorry, our bungalows are not accessible” was the reply. “You might be interested in our disabled bedrooms in the main building. But they aren’t for families.” Oh.

And this has pretty much been the story of my holiday search so far. Even the legendary Scott Dunn didn’t have anything that would suit. Almost unanimously, what ‘accessible room’ means is a room for an elderly couple. Not a family with a complex little dude and a riotous seven year old.

Slightly crestfallen, I started looking at tour operators who specialise in holidays for people with disabilities. But their ranges were limited in a whole different kind of way. Call me spoilt, but I don’t want to spend my summer holiday in a static caravan in Wales or in a Costa del Complex that looks like something out of Holiday Nightmares.

We haven’t yet found the perfect holiday for us, but the whole experience of searching has got me thinking about what would make the perfect holiday for us:

  • Guaranteed sunshine and just enough warmth to make swimwear the outfit of the day. Not too much though as Orange won’t cope.
  • Luxurious accommodation of the white fluffy towel variety. Infinity pools with a pool hoist. Space. Peace. Quiet. A few well behaved children from naice families for Bea to play with.
  • A gentle, flat stroll in to a pretty marina, with waterfront restaurants that will welcome the children, accommodate a wheelchair and spoil us with gastronomic delights. And wine. Lots.
  • A nanny on hand who has experience of complicated little dudes, is confident using a hoist, feeding small people who can’t chew and administering medication (I know, I know).
  • Flights and airport transfers that can accommodate a tiny wheelchair user with ease and confidence. With dignity for Orange, and peace of mind for us. And a huge luggage allowance.
  • Simple arrangements to send equipment and supplies ahead of time – special milk, medication, nappies, specialist car seat, a beach buggy and a specialist bed. Probably a mobile hoist too.
  • Four hours or less flight from the UK, with sensible flight times that don’t involve hauling ourselves out of bed at sparrowfart.

All of this, but for less than a gazillion pounds, please.

Mark Warner are looking for ambassador families to be part of #MarkWarnerMum and #MarkWarnerDad. I guess this post is a little bit of an inclusivity challenge for Mark Warner, as we have found that most luxury travel companies (and non-luxury travel companies too), don’t really acknowledge that there are families with more complicated requirements than the average who want to go on lovely holidays too.

It would mean the world to us to be able to travel on a lovely holiday as a family. To do normal things, in our slightly abnormal circumstances, but also to make memories too. We don’t know how long we’ve got Orange with us, being brutally honest. And while it’s hard to think that way, we must remember that life is often short, sometimes shorter than you might anticipate. And if we want to do things like travel as a family, we must find a way to do them now.

****This is my entry to become a #MarkWarnerMum for 2016. Wish us luck****

What would be your ideal holiday?

A little less whinge and moan, a little more Insta…

So, hello. The blog has had a little makeover as you will see. Hope you like it… After much fiddling around with WordPress in my pyjamas while the weather does its best to get into the house (that’s shoreline living for you), I think it’s almost there.

You know, if I’m completely honest, the makeover is a distraction tactic. I have to come out and say that I’ve had a crisis of confidence over this blog over the last year and that goes most of the way to explaining why I haven’t really posted much. Or at all since August…

On Friday, as I took a windswept stroll on the beach and did some much overdue mental filing, I started to remember why I write this blog, why I started it and what I wanted it to achieve. And I realised that last year I reached a roadblock that wouldn’t let me continue in the vein I had drifted into. I realised that I was backing myself into a corner where the only people who would be interested in the words and pictures on these pages were a small group of other parents of children with disabilities. And that the only times it was interesting to anybody outside of that immediate group were when something tragic or difficult had happened.

Attracting rubberneckers in their droves. Who promptly buggered off again when there was something important to talk about, or campaign for.

This was no way to normalise disability, nor to help families dealing with the same difficulties as ours to be and feel less sidelined in life.

Some changes were long overdue.

It won’t surprise you to read that I find most ‘mummy blogs’ absolutely interminably dull. An Instagram Life, landscaped, filtered, devoid of cellulite and the hum drum. And too many pictures of legs and feet in skinny jeans. But then there’s the odd gem that has you in stitches, or inspires you to try something new, picks you up when you are down or is just so plain beautiful to look at that before you know it, it’s become your coffee break favourite.

While I have no desire to place rose tinted filters on ours lives or take pictures of my feet, I have realised that if I am to speak to hearts and minds, to change opinions or to rally people well beyond the walls of disability to help create a more inclusive world, I need to employ some more magazine style. And some of the tactics learned so well in my career.

I know that if you really want to change opinions and behaviours you have to make something so desirable it becomes normal. And it’s only at the hands of parent carers and people with disabilities who write, blog and broadcast that it will be possible to show that life can be desirable, enjoyable, fun and normal (whatever that is), with disability in it. That we remain the people we are, with hopes, dreams and desires to fulfil. And that we should expect to do so, to continue our lives on the path we set out on rather than being sidelined into a box that says it’s ok for us to be fat and unhappy with homes that look like hospitals and a sudden desire to swap a lovely car for a fricking Berlingo.

Yes, there are hard times. Yes, the world often excludes us and our children. Yes, there is admin and bureaucracy. Yes, there are people in authority positions who think parent carers (read, mothers) shouldn’t work and that we should all be happy to have homes that look like a hospital equipment catalogue. But these are small elements of our lives. A part, not the whole. These are the things we want to change, but outside of that there is much that unites us with everybody else.

I’m not going to kid around here, there is most definitely cellulite and hum drum in our lives, but there is also gloss and fun.

A little Instagram never hurt anyone, hey.