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…

 

 

 

 

 

 

 

 

 

Escapism, and a Great Escape, at Camp Bestival 2018

Escapism, and a Great Escape, at Camp Bestival 2018

 

A sky high pile of envelopes addressed to ‘the parent/carer of’.

Walls wearing unfinished paint jobs, countertops aloft with leaning towers of ironing and a smattering of wrinkly spring onions in the gritty bottom of the fridge.

Trump on the news again doing another something or other terrifyingly ridiculous.

Brexit doom.

The life/work merry-go-round in perpetuity.

Sometimes I want to get off. To run away from responsibility. To hide from the underbelly and coarse features of humanity that are thrust at us from all directions around the clock. International politics. War. Poverty. Bureaucracy.

Sometimes I only want to see colour. To be part of something free and joyful. To feel  warmth of spirit and carefree human connection. To be in the moment, enjoying the present without fear of what the next moment may bring.

Of course those colourful moments exist in the everyday without having to throw oneself off the merry-go-round at full pelt. But to bask in it, to linger in the reverie and emerge renewed, there’s nothing quite like packing up your family and most of your belongings into a van, pitching a tent in a field, donning a pair of neon mermaid leggings and dancing like a maniac for a weekend.

Unlike most of my friends, I was never a Glasto-goer in my twenties. Until about five years ago the closest I’d got to a festival was a muddy, shouty, teenage weekend wearing my one-of-a-kind G’n’R spray painted DMs at Donington Festival of Rock, pretending to enjoy the sepulchral screeching of ‘Pantera’ as fully grown men hurled flagons of lager-piss above the crowds.

When we moved to Cornwall, we discovered the glorious Port Eliot Festival. Literary heaven, quirky music, colourful theatre, boutiquey food and drink, secret midnight discos, wild swimming and fashion life drawing. A weekend of magic, right on our doorsteps, that we could flit in and out of to our hearts’ content and come home to a warm bed.

We’ve been every year since 2012. But this year, we stretched our festival legs a little further afield to Camp Bestival at Lulworth Castle in Dorset.

It was our first ‘proper’ festival experience as a family. Full on camping, complete with festival loos and zero electricity. Wholly immersed in the festival, on site and in deep.

We henna tattooed and braided ourselves.

Wore silly hats.

Ate incredible food.

Drank gin slushies and rocked out to the DJ BBQ.

Sat under blankets in the shelter of a neon-lit castle chilling to Clean Bandit and snacking on churros.

Discovered music we didn’t know we loved in the alluring voice and songs of Rae Morris.

Re-discovered music from our childhoods in the 80’s shaped ham of Rick Astley and marvelled at his cameo drumming partner, (who knew Mary Berry could play?).

Re-connected with old friends over G&Ts and made new ones over a delicious communal dinner at the River Cottage tent.

Watched panto.

Made slime.

Rode on the swing carousel approximately 800 times.

Giggled and boogied to Indian brass band music.

Met Max and Harvey (if you’re 9, you’ll know this is pretty much hitting the big time).

Sat in the sun and chilled in the beautiful castle grounds, with music and festival fun all around us.

Cried with absolute joy and delight at our boy revelling in every second of Mr Tumble at the Castle Stage.

A life moment none of us will ever forget.

Unable to tell us with words of his excitement, he showed us instead with a beaming little face and bursting-at-the-seams dolphin kicks. We took turns to hold him as he went full on.

Cheering and flapping and lurching in our arms, electrified by the real life stage show of his TV hero happening right in front of his eyes.

There was absolutely no doubt in our minds that, for those forty jubilant minutes, our boy was enraptured.

Moments like that are not easy to come by when your child can’t talk or walk, when he can’t enjoy or perhaps even understand many of the regular common-or-garden things that bring magic to a typical childhood…

…Writing Christmas lists…The tooth fairy visiting…Winning pass-the-parcel at a birthday party…Fairground rides…Unboxing Shopkins…Climbing to the very top of a tree and hiding…

But there he was, partying like a pro and completely spilling over with joy and excitement.

Sheep dipping ourselves into festival life for a weekend also felt a little like rediscovery.

Remembering who we were before the small people arrived.

Remembering who we were before we tripped over the cliff into a world we knew nothing of and where we are still finding our feet, navigating childhood disability and the melee of physical work, admin, persuasion, fear, re-building, trauma, dusting-off, over-organising, isolation and emotional baggage it brings.

In a world where just leaving the house for a day out involves a major planning exercise, for a few days we could just be spontaneous.

But we couldn’t have done that at just any festival. Camp Bestival made it easy for us to  do this because they have worked hard to be inclusive.

The accessible campsite was perfectly sited up close to the action but sheltered from noise. With enough showers, toilets and space around us to make it manageable for a family with a wheelchair user.

The Mobiloo was on site with its changing bench and hoist so we could comfortably and safely change our boy. (Although next year we’d LOVE to see a second a third Mobiloo on site at the Castle Stage and down at the Big Top to save the schlep back to camp).

The wheelchair platforms at the Castle Stage make it possible for wheelchair users to see the main acts in comfort and safety.

The main thoroughfares are all step free and wheelchair accessible. We saw many a person zipping about the festival in electric wheelchairs and the terrain was perfectly manageable in our all-terrain buggy.

And most of all, it’s a friendly, understanding and judgement-free kind of a place.

After three days of unadulterated glitter-strewn fun in the sun, we were of course deeply gutted to have to cut it short on Sunday as the wind and rain called an abrupt halt. We weren’t quite done.

As campers across the castle grounds made a Great Escape from the brutal conditions, we glumly packed up our belongings and headed back west along the A35, exhausted, but brimming with the topped-up feeling of a great time had.

At that moment we could have quite happily stayed in festival mode forever.

The laundry pile, however, says otherwise…

Until 2019, Camp Bestival.

Camp Bestival 2018

 

 

 

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.

 

 

Because in real life there is no DIY SOS

I’ve never managed to get through an episode of DIY SOS without crying. Between the personal stories of the families for whom daily life at home has become such a struggle and the transformative work of Nick Knowles and his team, I’m damp eyed and lumpy of throat from the start.

Beneath the wonder though, at their clever design and heartfelt efforts, is a backstory.

Behind the handpicked selection of families for whom DIY SOS is a savour are thousands of families who need their help just as much.

The families you see on DIY SOS are not such a rare commodity that the problem of accessible housing can be solved by the benevolence of a TV production company alone.

In the real world, the material side of the TV screen, there is no ready-made supply of suitably adapted housing for those who find themselves disabled or who have a disabled child.

Moving house, even to a bungalow situated on the most pancake flat of plots, doesn’t solve the common problems of doorways too narrow for wheels, space to be able to get in and out of the bath or in to bed using a wheelchair, ceilings strong enough to take a hoist, a flat driveway for an adapted vehicle, and a home big enough for the whole family and all the adapted equipment, plus perhaps carers too.

Homes like this just don’t exist in the British housing stock. When we were facing the prospect that our home may not be affordably or practically adapted for our little boy, we looked, and Rightmove served us nothing.

Our first attempt at adapting our home, working with the Disabled Facilities Grants team from our local authority, didn’t go so well. Two years of lift breakdowns, exposed live electrics in the lift shaft and a garden with a newfound post-apocalyptic wasteland design, cracked oil tank as the centre piece, left us stuck.

Both lifts stuck at half mast, luckily with nobody in them

Often stuck in lifts.

Permanently stuck in a home we could now neither live in safely nor sell.

So we stayed put and hoped, with our creative thinking hats firmly planted.

The difficulties we faced with the Disabled Facilities Grants process are not unique.

Of the families we know who have used DFGs to help them adapt their homes, at least half of them have had to have the work redone because of poor design or workmanship.

The grants, while seemingly generous to an untrained eye, don’t touch the sides of the real cost of adapting a home.

The design process, led by local authority teams who often have little experience of complex adaptations and limited knowledge of the equipment and supplies available, can be fraught with difficulty.

At one point, plans were drawn up to site a through-floor lift in the middle of our kitchen, in front of the fire place, while outside a zig zag concrete jungle had already been created.

Often, families are told they must sacrifice their entire and only reception room to house a lift or a downstairs bedroom, leaving nowhere for the family to sit.

Often, hospital style plastic flooring in the home is pitched as the only acceptable option by local authority teams. Not because it is the cheapest. But because the process is rushed and ill-thought through, having not progressed from the ‘medical model’ era of disability (google it, but only if you’re not feeling vulnerable).

Often, ugly metal ramping is used in and around people’s homes when non-slip tiles or deck boards would be just as safe and sometimes cheaper.

Often, families are left to manage contractors they have had no involvement in choosing, that have been appointed by the local authority, with ill-conceived plans and vague budgets, leaving them exposed financially as well as causing damage to their homes.

Others are told their homes cannot be adapted at all and they must move which, all too often, isn’t true.

To be able to stay in your own home when you’re juggling the perpetual curveballs that disability brings means that some small thread of the narrative of your life can remain constant.

To be able to stay in your own home and have it adapted sensitively, without whiff of industrial wasteland nor hospital, is life enabling.

Over the last three years, we have worked with our local DFG team to help improve the process. Not just for us but for other families in Cornwall too.

I can say that lessons were learned from our first round of disastrous adaptations and the Cornwall DFG team has gone on to improve the service they offer to one that is becoming more family-centric, transparent and supportive.

As a result, four years after we first started adapting our home, we have just finished.

Our garden has an outdoor lift, to get our little boy safely from the house to the car, with two flat level play areas for him to access.

Accessible non-slip composite decking

The whole garden is still a useable family space, with enough room for us to grow things, barbecue, lounge and do gymnastics to our hearts’ content.

Wheelchair accessible artificial grass play area

Incline wheelchair lift from Cama in Denmark

 

 

 

 

 

 

 

 

 

 

 

 

 

The lift we chose was bespoke built, allowing us to have a safe way of transporting a wheelchair passenger in and around the garden without compromising on space.

It is marine grade, to help it survive the salty sea air where we live.

Inside, we created our own design and plan for the adaptations, which was then tweaked and tested by the DFG team to make sure it was viable.

Accessible bedroom plan

Pollock through floor lift

Since none of us would have benefitted from having a through-floor lift sited in the middle of the kitchen, we tinkered with the floor plan both upstairs and downstairs which meant we have been able to site the lift in its very own hallway space, tucked neatly away next to the utility room.

Tweaking the floor plan and moving the family bathroom meant we have been able to create an adapted en-suite for our little boy, with his own bathroom including a bath with a built in hoist seat and a riser to help carers to wash him comfortably.

Adapted bathroom with hi-low bath and electric hoist

 

Adapted en suite bedroom with wheelchair lift

Of course, no adaptations ever come cheap. Even bad ones.

For us, the DFG has covered the cost of the lifts and the bath and not much more. We have had to take on a significant amount of debt to fund the work and may be working until we die to pay this off. The DFG team has had to pump in additional resources to fund the rectification of the mistakes made the first time around.

The end result though, is a home that our little boy can stay in. A home that we can all live in as a family, that he can remain a part of and that we can enjoy in as normal a way as possible.

The brutal alternative would be for him to go into year-round residential schooling, at a vast cost to the state, while we waited for the gold dust that is adapted social housing. Which of course, none of us wanted.

Instead, we are able to stay in our own home independently, at a significantly smaller cost to the state, as well as keeping our family together and maintaining a sense of control over our own lives. And dignity.

That’s the power of a well-planned disability adaptation.

Who it’s all for

 

What are we trying to fix? Mothers, fathers, or work?

What are we trying to fix? Mothers, fathers, or work?

Last week, working dads hit the headlines. And about time too.

As the Women & Equalities Committee announced its findings that working dads are being failed by workplace policies, radio and tv news were alight with the talk of paternity leave, with the usual comparisons to how things are done in Sweden, the apparent holy grail of work life equilibrium.

In our own lives, we tiptoe along a tightrope of constantly competing family and work commitments. While I suspect it was easier for me as a mother to request some form of flexible working than it would be for most fathers, ultimately, employment still failed me. Twice.

Last month’s mega trends report from the CIPD showed that the number of people choosing self-employment just keeps on rising. The growth being driven predominantly by women.

Have women in the UK all of a sudden got the self-employment bug?

Or has employment failed them too?

As an economy, we have invested huge time and resource in changing legislation and workplace culture so that it can be more ‘motherhood friendly’. And yet women are leaving the workforce in ever increasing numbers.

Something just isn’t working.

Old school stuffed-shirt rhetoric would say it’s us women. We don’t work as employers need us to. We ask for too much and give too little in return. The men, after all, are the reliable mainstay of the workplace. Rarely asking to work flexibly. Never leaving early to attend a school play. Never taking a day off at short notice to care for a sick child.

Except that’s just not true.

Today’s generation of dads want more than any other in recent history to be in equilibrium with their work and life so they can play an equal part in raising their children and running the home. All the dads under 40 that I know, including, I am glad to say, the one I am sharing parenting with, are doing this already, work flexibility or no flexibility.

So after decades of trying to fix women in the workplace, and beyond maternity legislation arguably failing, we should now try to fix the men?

Sarah Jackson OBE, Chief Executive of Working Families doesn’t think so. And I agree. The charity’s most recent Modern Families Index showed that men are already making compromises. Turning down job opportunities and promotions just as many women do, in order to maintain some semblance of balance.

Except it’s not working. Because we are trying to fix the wrong things.

Parenthood doesn’t stop at the end of maternity or paternity leave, or when our children start school. It is a lifelong commitment.

Focusing on equalising maternity leave and paternity leave ignores the enormous elephant in the room that, for the most part, conventional employment and family life are pretty incompatible.

People string it together of course. Because roofs and heads dictate that they have to. Often at the expense of their own physical or mental health and wellbeing, or that of their partner, or children.

Equalising maternity and paternity leave does not help the family with a teenager having an anxiety crisis. Or the grandparent whose son or daughter has a child with a long term health condition or disability and desperately needs an extra pair of hands. It also doesn’t help the son or daughter whose own parents are ageing and may need daily help because of frailty, dementia, or cancer.

This is life. It’s big and messy and complicated.

It happens to all of us in one form or another and if employers want to maintain the quality of their workforces, they need to start reshaping what they do and how they do it.

What we collectively need from employers are employment and career opportunities that are flexibly and genuinely open to people at all stages of their lives, so they don’t have to stop when another part of their life demands pole position.

But bosses haven’t caught on. According to recent figures, less than one in ten ‘quality jobs’ (paying £20,000 FTE or above) are advertised as being open to flexible-working options. This is trapping millions of employees who are either unable to progress their careers on a flexible basis or are locked-out of the jobs market completely due to their need to work flexibly.

So what do we do?

How do we fix work so that employment and family are not an either/or.

As Sarah Jackson said, “There is not one type of job that couldn’t benefit from being flexible in some way, even an A&E consultant can job share.”

Creating a flexible and supportive workplace can come in many guises.

Innovative shift pattern planning.

Annualised hours.

Unlimited leave as seen at Netflix and Richard Branson’s Virgin Group. Paid carers’ leave as recently announced by Aviva. These are the shining lights of hope in an employment market still hellbent on bums on seats nine-to-five.

These are the companies that have realised just in time that there are real risks to business in employees choosing to resign in search for a better work-life fit. These are the companies who have realised that flexible working is not a bolt-on to solve individual employee problems one by one, it’s about developing a culture where an organisation’s people are in control and are measured on results not presenteeism.

Parenting and caring are a life reality. Work is a requirement to pay the bills and for most of the population still, that means being employed.

We shouldn’t have to choose between the two, or be forced into taking our chances in the self-employment market if we don’t want to, simply in order to protect our own health and wellbeing and that of our families.