On your marks, get set…

Image by MonikaP from Pixabay 

When was the last time you relaxed? Really, truly, let it all hang out and drift away? Empty headed, loose limbed, unclasped. With nowhere else to be in body or in mind.

I had this conversation with myself last week and realised I couldn’t remember a time since the birth of our children when this has actually happened.

And yet, even with a pretty complicated household that requires a lot of heavy lifting and creative parenting, I couldn’t put my finger on why?

Why is it that when sleep comes, it brings with it a fistful of things I’ve forgotten to do and an anarchical narrative of chaos? When dreams are supposed to perform our back office mental filing, why are mine more of an apocalyptic helter skelter?

Why is it that even in the narrow windows of downtime, I always feel like I am waiting? That my attention cannot commit wholly to a task, a project, or even a book because at any second it is likely to be needed elsewhere.

I’m pretty sure that even in the pitch-dark sensory detachment of an isolation tank, I’d still have half an ear or an eye open and ready.

Stuck at the start line, expectant for a gun to fire that signals me into action. Sprinting to intercept a meltdown or ambush a silent choke on a mouthful of dinner. Picking up the perpetual baton of moving the day forward for children who can’t or maybe won’t do this for themselves. Seeing the hurdles of the SEND system as they come into focus on the horizon and conceiving of how to scale them, before a fall comes.

I am sure this feeling of being always on, always ready, is not at all unique to mothers and fathers of children who have disabilities or health conditions. Perhaps this is just what happens when you put a little piece of yourselves out into the world?

It’s just that, for us, maybe it’s heightened. The light switch is always turned to full, never dimmed even the slightest.

That meltdown isn’t a tantrum that can simply be ignored in the hope it will run out of oxygen, that phone call to book a brain scan or arrange a wheelchair handover isn’t one that can be sent to answer phone to be dealt with another day, that small sound in the darkness of the night might be nothing, or it might be a seizure.

The question of ‘what if’ is always looming overhead, its intensity pressed down on us by the knowledge that we are constantly under the gaze of armies of public sector workers that keep watch over our lives, circling around us in the name of support.

We know we don’t have to be perfect, but there is judgement, and reporting, and for that I know I don’t want to miss a single thing. We never know whether that circling will bring safety, like dolphins protecting their young, or threat, like vultures, sniffing and gliding in search of prey.

There is no off switch. There are very few moments when it is possible to unclip your spikes from the starting blocks and sit down on the warm grass to enjoy the view.

The only option as I see it right now is to buy a really comfy pair of spikes, and maybe some knee pads, and settle in for the long haul. Right there where we need to be, in the starting blocks. Ready to go when our children or the systems that support them need us to spring into action.

The emotional rewiring of being a Grown Up

The emotional rewiring of being a Grown Up

The Grown Ups. The rule makers. The tea drinkers. The ones who keep the cogs of daily life churning and will always be there ‘in a minute’. 

As a child, the Grown Ups were also the ones who would say deeply irritating things.

Like endlessly and predictably commenting on how many inches I had grown (when I hadn’t) and prevaricating about how tall I would be (which I’m not). This happened to me so often that I had to cultivate a special face for dealing with it politely.  

That same face was deployed as armour against any adult wafting around a nostalgic mist about how simple life was being a child and ‘if only we knew’. It also came out when presented with Something Disgusting at someone else’s house; Cadbury’s Smash, orange squash, tinned spaghetti hoops or anything in a box labelled Mr Kipling.

It doesn’t seem to be impolite for children today to say they don’t like something but in 1980s suburbia that was unthinkable. If you wanted to be invited round for tea again, you’d coerce down the gullet whatever offending slops were put in front of you.

I couldn’t wait to be a Grown Up so that I’d never have to eat Cadbury’s Smash again, no-one would ever again comment on my height, and life would be simple. I didn’t care for nor heed the humming narrative around me about how I should relish the joy and wonder of my Golden Days of Childhood – (which people don’t really talk about anymore either, I wonder why?)

As a child, most things in life were black and white. I liked my dinner, or I didn’t. My room was tidy, or messy. Becky was my best friend, or she wasn’t. I was good, or naughty. Happy, or sad. Excited, or frightened.

There were distinct and opposite ways of being, which could oscillate wildly in mere minutes, but which had very little grey space in between.

If I have learnt anything about life since that time, about what it means to be a Grown Up in the 22 years since I officially became an adult, it’s that the familiar and comfortable black and white of childhood existence starts to disappear.

Eventually, the grey space in between completely takes over. An unspoken and shapeless emotional jumble that mushrooms with age and experience.

For me, motherhood brought my first real living experience of that emotional jumble. Having a disabled child brought me into a head-on collision of love and joy for the new little person in our lives, tangled inseparably with fear and sadness.

How could I sit amidst this jumble, hitting the top and bottom of the emotional octave, when it felt impossible to play in a major and a minor key at the same time?

I craved the emotional clarity and sharpness of younger years. The simplicity of childhood that wasn’t so much golden, as black and white. Suddenly it made sense, what the Grown Ups had said that I’d found so irritating, and had to put on a special face for.

As I have learnt since, humans are naturally hard wired to become accustomed to this grey space. As we age, our deeper understanding of mortality brings with it a phenomenon known as ‘poignancy’. The wisdom of elders which holds the knowledge that even negative emotions have to play a role in a truly good and fulfilling life.

 As we get older, it’s been proven that we get better at navigating seemingly contradictory emotions at the same time. (For the scientifically minded, there’s a brilliant study here).

We have to learn how to do this, otherwise how would we countenance waking up in the morning aged 90, when so many of our nearest and dearest are in holes in the ground?

Sometimes though, we have to get good at juggling and spinning our emotions far sooner than we are ready for. To learn to sit with sadness and happiness at the same time. To hold on to hope when we are afraid. To show compassion when we are angry. To stand up when we are weak.

Motherhood has knocked me down more times than I can count. As any parent of a disabled child will tell you, the complicated inner journey of parenthood is all the more frequently shaken and stirred for us. The emotional twists and turns are raw, real and often unexpected.

This also means that the ‘poignancy’ of life, that allows us as humans to co-exist with a jumble of emotions, is very present for us. We find it sooner, perhaps. At some point, it actually starts to feel okay, normal even, to feel sadness in happiness, and happiness in sadness. Emotions that have once been polar opposites now sit alongside each other in a harmonious mash up.

Now I just like to think of it as an early awakening. Because at some point, for pretty much all of us, shit gets real. Uprooted by cancer, disability, loss, grief, our unquestioned foothold on the world will falter. At first we long for solid ground but then we learn that there is no ‘getting back to normal’, just finding a new one.

Being a Grown Up isn’t defined by the appearance of an under neck chin bag (thanks for pointing that out, dear daughter) nor the disquieting ability to purchase alcohol without being asked for ID, it’s learning bit by bit to exist comfortably in the gloriously technicolour grey space. 

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.