Why I won’t be writing a countdown to 40 bucket list

Why I won’t be writing a countdown to 40 bucket list

 

9 months. Long enough to grow a human baby, or about 5 inches of hair. Time to complete a university academic year, or perhaps grow a banana plant.

Exactly 9 months today, I will turn 40.

Apparently that’s when life begins. Apparently it’s also the time by which a person should have ‘challenged oneself to do something that seems impossible’, ‘been on safari’, ‘read every book by a favourite author’ and ‘learnt about wine and cheese pairing’.

By those standards, I am perhaps running out of time. And I’m a literature graduate who really likes wine and cheese.

I have watched lions devour meaty carcasses at Longleat from behind my car window, and I have challenged myself to eat whole chillies and to stay awake all night, but I’m pretty sure the list makers would tell me those things don’t count.

Apparently it’s also the age by which a person should know their net worth (zero) and also know how much they have saved for retirement (also zero). That’s two ticks in the box there then. Or crosses. Whatever.

I’m not sure how I imagined my life might be at nearly 40.

If you’d asked me aged 10, I’d have said I’d be in the army or an equine physiotherapist, most definitely with no husband or children. Yuck.

Ask me again in my early twenties and I’d have forgotten those dreams and acquired some level of interest in men, babies if really necessary. Consciously or unconsciously shaped down a more conventional path, wallowing in dreams of writing literature while panic-buying jobs to pay the bills.

Ask me at 30 and I’d have convention written all over me with a husband, child and a mortgage in tow. I’d have imagined 40 would bring a beautiful house, travel, a sophisticated capsule wardrobe, children accomplishing amazing things.

Ask me now, having thrown convention somewhat to the wind by having a disabled child (not planned) and moved to Cornwall (somewhat planned) and I’ll show you a money-pit with grand plans always slightly beyond budget, camping holidays, a motley collection of clothing either too big or too small (mostly too small) and children accomplishing amazing things, just not the ones I expected.

When your children have special needs, pretty much everything becomes an amazing accomplishment, even if that thing is learning to crawl across the living room floor aged seven. Not how I expected. Not worse. Not better. Just different.

If 40 is supposed to be when life starts to get a little easier, I can’t imagine it being that. If it’s supposed to be the beginning of the end, I can’t imagine it being that either.

And yet it does feel like a milestone.

To be celebrated. Or marked in some way. I feel the need to do something.

I’m pretty sure I’ve already had at least one mid-life crisis. I have quit a multitude of jobs in my time. Moved to the seaside. Started a business.

I don’t need to burn the house down and start again.

So what next?

Maybe it’s time for pink hair and another tattoo. Time to finally write that book, or take up yoga.

Perhaps.

What I hadn’t anticipated, though, was the need I feel nine months from d-day to literally and metaphorically get my house in order.

I don’t know if this is typical behaviour in the final countdown to 40 or a hangover from the ‘living in survival mode’ for so long that having a child with special needs brings. Maybe it’s not either of those things, but a natural follow on to burn out. Rebuilding from the ground up. Taking control from chaos.

All I know now, with nine months to go, is that at 40 I’d like to feel like I’ve got my shit together a great deal more than I have right now.

For me, there will be no adrenalin filled ’40 before 40′ bucket list. No list of must haves or must dos. But I do want to take control. Get organised.

Maybe that’s just called being a grown up and I’m actually decades behind?

I like to think instead there’s no such thing as ‘grown up’, these days and its all just an iterative process of getting gradually better at being human, step by step through life.

Either way, the next nine months bring with them an exciting cocktail of Slimming World and Kon Mari.

Shifting unwanted belongings in more way than one.

Being left with only the good stuff.

Making space.

Space for life to begin, maybe.

Like Carl Jung said, the first forty years ‘you are just doing research’ after all…

 

 

 

 

 

 

 

 

 

Parent carers: the hidden stress epidemic that no-one is talking about

Parent carers: the hidden stress epidemic that no-one is talking about

Last year, I learnt a lot about stress. The hard way. I am now almost 12 months into recovery from ‘burnout’. Not an official medical condition in its own right, but the symptoms most definitely are, with anxiety and depression sitting at the helm.

As I sat across the desk from the doctor in occupational health, the list of ‘risk factors’ for work-related stress that he read out was like listening to my own job description. As it actually was. Not the official version sitting somewhere in an HR file.

But as I listened, I realised that the very same risks at work that had tipped over my ‘stress’ into ‘mental health problems’, were lying in wait for me at home too.

Double whammy.

Nowhere to rest, recover, or top up the tank.

Being a parent to a disabled child is one of the most rewarding experiences of my life. He gives nothing but love and joy. But as parent carers the systems we have to negotiate and the situations we have to manage can be devastating for our mental health.

While employers have a legal duty of care to protect their employees from the damaging effects of unmanageable work-related stress, there is no similar protection for carers.

There is no big red button to press when stress becomes overwhelming. No solution offered, bar anti-depressants from the GP. The number of parent carers on long-term doses of anti-depressants must be staggering.

But anti-depressants should not be the answer to a system that all too often is the primary source of stress for parent carers. Amongst my own parent-caring peers, major life trauma aside, it is the systems delivering health, social care and education, not the role of caring itself, that are the cause of the most tears, frustration and often desperation.

Being technical and academic for a moment, there are six clear areas of risk for mental health damage through stress that the Health & Safety Executive has identified which employers must mitigate, or invite a law suit. Every one of them with red flags all over the place for parent carers too.

“Not able to cope with the demands of their work”

Caring is a 24/7 job. A physically, emotionally and mentally tough job. One that comes with a daily waterfall of paperwork and a team of dozens of people to manage, chase, meet and feed back to. Even the ‘short break’ that is supposed to come with a few hours a week of local authority funded carer time (for those who have fought for it), comes with the requirement to set up as an employer, recruit a carer, organise their life support & epilepsy training, hire and manage an accountant, report monthly to the local authority with timesheets, expenses and bank account balances.

Then there is the deep frustration of living your life amongst an NHS referral and appointments system that is not set up to adequately cope with long term or complex conditions. Or even to share information across trusts. Where errors are made, reports have to be chased and often corrected. Where appointments you have had to chase for months to get are cancelled by the hospital and then you are sent a rude letter because you ‘Did Not Attend’. Black mark to us… Back to the bottom of the snakes and ladders referral system we go.

“Unable to control the way they do their work”

Unwieldy bureaucracy does not lend itself well to any feeling of control. There is no sensible grouping of appointments and often little ability to dictate when and where they happen. Decisions about critical aspects of life like where your child will go to school, or where they are cared for when not at home are made by panels of people you have never met, and who have never met your child either.

We live our caring role atop a perpetual fear merry-go-round that we cannot control, of social care packages being reviewed every six months against a suffocating backdrop of ever increasing local authority cuts. We always have to be on our game, anticipating the next threat of a reduction or removal of support on which our child’s wellbeing and our ability to cope depends.

“Don’t receive enough information and support”

Bamboozling reports from medical professionals and social workers. Boxes filled but no real answers given. If you don’t fit the common mould, or a particular pathway, there is a cavernous Grand Canyon size lack of relevant information and support if you are the parent of a child with a disability or complex condition. Local authorities and the NHS are champions at over-producing reams of information <see ‘Family Information Service’>, but finding the relevant and useful stuff, well, good luck.

“Are having trouble with relationships at work, or are being bullied”

All too often relationships between parent carers and the local authority or NHS staff who are supposed to support us can be extremely testing. When relationships are good, they are great. When they are bad, they are incredibly damaging. I have witnessed friends of mine being bullied by social workers and left floundering in the most impossible of circumstances. To the point of the most severe impact on their mental health and that of their families.

“Don’t fully understand their roles and responsibilities”

There is no life manual for being a parent carer but there is an endless stream of people who come in to your life with their own views on what your job is. I have dined out too many times on my own personal anecdote of the early support worker who quizzed me on the exact number of minutes of physio I was doing with my son daily in the same sentence as telling me that ‘my decision to work was a lifestyle choice’.

“Are not engaged when a business is undergoing change”

The zig-zag boomerang rollercoaster of change in every aspect of health and social care impacts us constantly. When you interact with many multiple services week in week out, it can leave you feeling lost, spinning, concussed.

Many of the parent carers I know do their damnedest to keep on top of service change, attend public meetings, respond to consultations and help progress in the system as much as we can. But it’s not always easy and all too often we have to fight for it. Local authorities will say they have ‘engaged’ if they send a poster about a proposed service change to their local parent carer forum. The same forums that don’t promote themselves and that most parent carers aren’t members of.

No escape

When my health was compromised by a job that ticked all six of these risk factors, I left. But the jobs that come with being a parent carer aren’t jobs you can just walk away from. We cannot choose to engage with a different local authority or a different NHS. Because there is no choice. It’s what there is. We are bound to them, Hotel California style. There is no way out.

And while I can do my utmost to encourage and support change, and to highlight and celebrate good practice when I see it, I am genuinely fearful for both my own mental health and that of every parent carer in the country who has to accept these risk factors into their lives probably forever.

Who is looking out for the carers? Who is accountable when a parent is exposed to these risks not by an employer, but by the health and social care system that is supposed to support us?

Where is the big red flag that highlights somewhere in the system that a parent carer is at risk of being shunted face first into overwhelm? Until they show up at the GP with symptoms of anxiety and depression?

Because if you can keep the carers going, you can keep the cared-for going too.

 

 

When work and wellbeing didn’t mix

When work and wellbeing didn’t mix

This is the first time I have written anything for the blog since April. It was round about the Spring when I knew something definitely wasn’t right.

Since then, I’ve been right down to the bottom of the ocean and back up again. Not the exotic, pretty parts of the seabed, bursting with rainbow corals and shimmering shoals. Where I went, it was dark. Murky. Where you can’t see your hand in front of your face and you don’t know what’s coming up behind you next. But you know it’s a long way back up to the surface, if you can find it.

There was a time when I thought that negotiating the smoke and mirrors of the education and social care systems for Orange would call time on my sanity. This is the brutal truth for more SEND parents than I wished I knew. So far, for me, it hasn’t. But since I’ve had the weather eye of a hawk on that front, sharing the load with family and my band of SEND sisters, I missed the hurricane as it snuck up from the other side.

When Orange arrived, he changed my outlook on life, and work. I wanted to do something that mattered. Which isn’t always easy when you’ve built your career in public relations in the City and Soho. So getting a senior role at a NHS and social care provider finally felt like I could make a difference. A job where my personal values could come to life through my work. A career coach’s dream, right?

For the first year it felt amazing. I was good at this. Using my skills for something real and important. Engaging my brain in a way that became a wonderful distraction from dealing with the 5,674 ways the local authority was trying to make Orange’s home adaptations and school transport into a sticky quagmire.

When the storm clouds started to gather at work, I thought I could bat them away by listening to audiobooks about ‘how to be brilliant’ and blaring Tim Ferriss podcasts that would show me how to tackle any sort of work crisis that might come my way.

I thought that because I’ve had to tackle challenges so far out of the ordinary, like resuscitating my own child, that I could tolerate pretty much anything and come out of it unscathed.

But I couldn’t.

No amount of inspirational podcasts and books about creative brilliance and productivity could relieve me of the uncomfortable fact that being in my job was beginning to compromise my sanity.

A sorry but familiar tale of resource and people-power deficits that I thought I could overcome by just working myself harder. For longer.

A broken corporate culture that I thought I could overcome by imagining I was wearing a coat of armour at my desk, deflecting arrows as they flew.

The stuff of fantasy. But not the marshmallow kind.

None of this is news to anyone who has picked up a newspaper or switched on the tv in recent months. It’s health and social care. It’s the UK. There’s not enough money. Not enough people. And what happens then? People have a crap time at work and do a worse job.

I held on too long.

Why?

Because it matters to me that I work. That I have a career. That what I do makes a difference.

That as a mother of a disabled child I will cling on by my fingernails to the opportunity for financial independence and career development. Because I know others want that too.

I have campaigned about the rights of mothers of disabled children to have careers, too hard to just give it up. So walking out the door on an intolerable situation was out of the question.

In the end, my brain and body did it for me. Pushing too hard for too long eventually saw me unable to get out of bed bar a visit to the GP to find out why I felt like I was dying. Why I thought I was having heart attacks in the middle of the night. Why I couldn’t sleep. Why I spent two weeks on leave from work in the summer that I don’t remember a minute of.

It was a wake up call.

Months on and I have resigned from my job, with shiny new consultancy work waiting for me on the other side. I have started boxing again. Seen friends I haven’t seen in months. Taken up a new writing hobby as a theatre critic. And opened up this blog again to find a raft of messages from readers I didn’t know were reading but have given me a refreshed sense of why I write.

Because this matters. And I can make change happen on the outside. I don’t need to work inside the system to do it.

 

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

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.

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