Finding work that works as a mother and carer #IWD18

Finding work that works as a mother and carer #IWD18

Seven years ago, on 8th March 2011, while I was busy giving birth to my second child, thousands of women marched the sun strewn streets of London to mark the 100th anniversary of International Women’s Day.

As I peered out of the 6th floor windows of the St Thomas’s Hospital birth suite at the sea of purposeful female bodies and placards crossing Westminster Bridge below me, I never imagined that day would leave its mark on me as any kind of feminist or campaigner. Between greedy gasps of glorious gas and air, I had no idea that the little boy I was about to give birth to would open my eyes to a world where women are so often vastly disadvantaged.

I didn’t know my little boy would have a disability. I didn’t know I was about to become not just a parent but also a carer. I didn’t know that would put me in a position where continuing to follow my career path in the conventional way would become impossible.

The juggling that today’s working parents face in keeping it all together at home and at work is a constant headline hitter.      When caring responsibilities are thrown into the mix, for all too many parents they soon find the option to juggle just isn’t there at all. The balls are not in their hands, or even in their court.

For many parents, they soon discover that there is no workable equilibrium between the demands of employment and the demands of caring for a child with special needs or disabilities. Whether through exhaustion from managing night-time care, or through finding themselves buried under a constant avalanche of malco-ordinated health and social care appointments, the window for productive work shrinks rapidly.

Even for the lucky few, whose child sleeps without need for medication, feeds or nighttime settling, and whose appointment load is reduced to just a few a month through ruthless navigation of the system, the chance of finding employment flexible enough to allow for the inevitable emergencies, equipment deliveries and paediatric or education reviews is slim.

But talk to just a few parents of children with disabilities who have managed to find work that works, and they will tell you that work can be not just a financial necessity but a sanity saver too.

Right now, employers are just beginning to switch on to the benefits of flexible working. There are the enlightened few, who have been doing it for years, and reaping the productivity and loyalty rewards as a result, but for the mainstream it is still early days.

While we are on this path to flexible working becoming the norm for the majority of office based jobs (because it can and absolutely should), please let’s not forget the carers amongst us.

Most often, it’s the women who are the parent carers.

Most often, they aren’t returning to the workforce. I am one of just 16% who has, compared to 74% of mothers of non-disabled children.

We need to raise up the 16%.

This post was written for International Women’s Day 2018, as part of #whenibecameamother being hosted on Instagram by @steph_dontbuyherflowers


Who cares at work? Are you investing in the carers in your workforce?

Who cares at work? Are you investing in the carers in your workforce?

Four years ago I sat in front of a group of parliamentarians at Westminster, alongside four engaging, intelligent women who all had successful careers and who also happened to be parents and carers for their disabled children.

We were there to share our stories about the childcare crisis for disabled children, and the extreme challenges of maintaining any kind of career around having a child with disabilities.

Under the wings of Contact, and Working Families, who paved the way in campaigning for affordable childcare provision for disabled children, we achieved widespread awareness of the need for change, and an amendment to new childcare legislation to help make childcare more affordable for parent carers, who often pay a huge premium for scant provision.

Since that time, the conversation has moved on. Childcare provision still needs to evolve. Massively so. But what’s really exciting is that the other main driver in making it possible for parent carers to work – flexible employment – seems to be undergoing quite a revolution.

The movement towards flexible working becoming the norm in the UK gained major ground in the UK last year. Though the benefits of flexible working had been established many years previously, in 2017 it was the topic du jour for companies alongside workplace wellbeing. Report after report was published, proclaiming the ‘workplace revolution’, with firms not embracing flexible working finger pointed as being out of step with employees.

Perhaps it’s the millennial effect, as more and more of the next generation take leadership positions in the workforce. A generation that knows it is possible to carry out many work tasks effectively, more so in fact, when you have greater choice over where and when you will do so.

Maybe you are one of those millennial leaders, or perhaps you’re the other side of 40 and have been managing teams for years. Either way, you will surely be thinking about how to embrace flexibility in your team or in your business.

The reality is that if you’re not, employees will leave your organisation and seek work elsewhere. Either at companies who are embracing the change or by working for themselves, as increasing numbers of people are doing because technology is enabling us to do so.

The latest Modern Families Index from Working Families showed that work is taking a heavy toll on home life for many. Employees who come home too drained to even cook a meal, with day after day of juggling family or caring commitments with an inflexible work schedule, are finally saying they have had enough and are voting with their feet.

For parent carers with disabled children, the challenge of combining work, parenting and caring can be insurmountable.

Climbing a mountain of managing personal care, feeds, medication and therapy, school runs and the usual breakfast rush before clocking in for a day’s work.

Juggling not just school plays, celebration assemblies and sports days, which you actually want to be at, with a multitude of things you don’t want to be at but have to.

Team Around the Child meetings, EHCP reviews, paediatric appointments of multiple types all at uncoordinated times, wheelchair assessments at the opposite end of the county, social care reviews, adaptations meetings, equipment and medication deliveries. These commitments quickly fill up the calendar if you let them and it’s often a fight with health and social care to reduce the appointment load.

Coordinating all of that while keeping one’s bottom appended to a chair in a particular office for 40+ hours a week is probably impossible. Certainly I’ve never managed it and nor would I want to, parent carer or otherwise.

What is possible though, is making work work around these commitments. Working from home, and videoing in to team meetings on the day of an equipment delivery. Starting early or finishing late to accommodate a TAC meeting. Making use of the hospital wifi to whip up a report or a proposal while waiting for an appointment. Holing up in a cafe on a Saturday morning to write a strategy.

It’s estimated that between 1 in 7 and 1 in 9 people in the workforce have caring responsibilities at home, be that for a disabled child or a sick or elderly relative. With up to million more UK workers secretly juggling caring responsibilities with their jobs, because they are nervous about telling employers.

If you’re a manager or a business owner, you will almost certainly have carers in your teams.

If you don’t know who they are, they’re pretty easy to spot even if they don’t identify themselves as such.

More than likely they will be the ones avoiding the afternoon water cooler chit chat. Not because they are anti-social, but because they HAVE to leave on time.

More than likely they will be the ones who never pull a sickie. Not because they are never ill but because they know a time will come when they need to ask for unpaid leave to accommodate their caring responsibilities.

More than likely they will be the ones who show unfailing commitment to their work. Not because they are workaholics but because disability and ill-health is expensive and they NEED that salary to keep on rising. Perhaps to pay for premium-priced specialist childcare, or to buy a wheelchair accessible vehicle, or to adapt their home.

At the moment, the law is not on our side as carers. There is no legal right to ‘carer’s leave’. Most of us resort to using up annual leave entitlement to manage caring needs, taking unpaid leave or taking sick leave if the stress of working and caring starts to affect their own health.

Until paid carer’s leave is a legal requirement with government funding attached – like statutory maternity pay and sick pay – there are things you can do as an employer, a business owner or a team manager to help your company hold on to talented people in whom you have inevitably invested significant time and money.

  • Introduce paid leave for carers off your own back. It’ll pay for itself in loyalty and talent retention.
  • Enable staff to work flexibly wherever possible. Use technology to your advantage. Focus on productivity not presenteeism.
  • Remember dads are carers too. This isn’t about just women in the workforce and nor should it be.
  • Foster an open culture that acknowledges your employees have a home life that will always be more important to them than you are.
  • Put workplace wellbeing at the heart of your people management. A well and happy employee will always do a better job, at work and at home. Stress helplines and yoga classes are just a sticking plaster though. The key to wellness at work is to place realistic workloads and clear objectives on your staff. Don’t leave them floundering under overwhelming or vague expectations. It’s a recipe for burnout, particularly for carers for whom there is no or little rest break at home.

With the cost of replacing talented employees in the many thousands, and the number of carers in the workforce expected to rise massively as the population ages and medical advances mean more children with disabilities survive, you will be saving yourself a packet by investing in your carers now.

Finding new (SEND parent shaped) feet

Finding new (SEND parent shaped) feet

This too shall pass…

A parenting mantra I learnt in the early newborn bundle shaped days. Every challenge was just a phase. You find your feet, again and again. Even the most smothering days of clingy round-the-clock feeding and pop-eyed nap refusal, that felt like they would go on forever in a Groundhog style loop, faded one by one into a comfortable routine.

It gets easier! I promise… well, not easier, it just gets different. You are different…

These words from a friend with older children were cold comfort in the early confuddlement, but she was right. Far beyond the newborn chaos, parenting my eldest now she is nine is still a challenge. But I am different. I found my feet.

Common knowledge has it that your second is a breeze.

You know what you’re doing second time round. It’s so much easier…

And that’s where my fellowship with mainstream parenting consciousness came skidding abruptly off the beaten path.

Sure, second time round I knew how to breastfeed, change a nappy, bath a baby. I knew how to operate a pram, wear a sling, get a baby to sleep, choose a weather appropriate baby outfit. I knew how to make it possible to have a shower at any given point in the day with a newborn in tow. And drink a cup of tea while it was still hot. All the stuff I had no idea how to do the first time around and that felt either terrifying or impossible the first few times.

But did I know how to keep this boy safe and alive and well? What was it I could see in him in those early newborn days that seemingly no-one else could?

It was 11 months before I attended my first SEND baby group. Before that I hid in the familiar, busied myself with revolving around my toddler, relieved but privately troubled that O was a placid and easy baby. I tried to ignore the words from the screen that told me to be fearful, even though I had sought them out myself through many a night of raking the far academic corners of the web for reasons why my baby was different.

I knew he was different even if no-one could tell me why. I wanted to protect him from the world until I could fix him. Physio, sensory therapy, developmental specialists, postural equipment, the latest neuro research from across the world. I would do whatever it took. Research and learn whatever I could. Work as hard as I had to in order to fix whatever was wrong.

But at that SEND playgroup, on a grey Tuesday afternoon in January, for the first time I felt like maybe I didn’t need to fix anything at all. My baby wasn’t broken and nor were our lives. In my first glimpse of this new world I found kindness and fun. And actually, it didn’t feel all that different after all.

If I could have stayed in that little SEND playgroup shaped bubble, I should think I’d have found my feet as a SEND parent much quicker than I did. But outside of those doors the world grew slowly more unfamiliar each day that passed.

I didn’t know where we belonged. This too wasn’t ‘passing’, it wasn’t ‘getting easier’ and I had no idea what I was doing at all.

We drifted.

And then we ran away to Cornwall, caught up in the excitement of new lives far away, in a place where we could find out feet again.

But even the heady hopes of a fresh start by the sea couldn’t shield us from the difficult path ahead.

The obvious challenges of SEND schooling, healthcare & social support aside, decisions about what to do with the house, what car to buy, whether to go on holiday abroad,  – all typical family enterprises – become wrapped up with so much anxiety that years went by before we did any of them at all.

How could we renovate our tumbledown cottage when we didn’t know what O would need? Lifts? Hoists? How would we afford it?

How could we buy a new family car when we didn’t know if O would be able to get in and out of it independently or would forever need our help and two wheels.

How could we go abroad on holiday when we didn’t know when he would next have a seizure and stop breathing? Or how to sit him up in a plane seat, even.

We had drifted, and got stuck.

It is only now, five years on that I think I’m finding my new (SEND parent shaped) feet.

Last year, we went on our first holiday abroad with O. We all had such a brilliant time we are daring to do it again.

This year, we’re finally getting round to renovating and adapting the house with a lift, adapted bath suite and a hoist. And it doesn’t look like a hospital but a home. I might even stretch to say a tasteful one at that.

On Friday, I bought a wheelchair accessible vehicle. And it is seriously cool.

All these things had become huge roadblocks to us having a normal family life but suddenly they seem to be slotting into place. The desert storm dust has settled.

Perhaps my friend was right after all. It hasn’t got easier. It won’t get easier. But it is different. And I am different too.





Careering off-track or stalling on re-entry: the hidden brain drain of parent carers from the workforce

Careering off-track or stalling on re-entry: the hidden brain drain of parent carers from the workforce

Since Motherland exploded onto our TV screens last month, the conversation about working parenthood has shifted up a gear. Whether you relate to the character parodies or find them slightly absurd, there isn’t a mother I’ve spoken to who hasn’t recognised a bit of their own lives in the narrative.

As a female growing up in the 80s and 90s, I was always supported to believe that I would have a career. That I could be independent and successful in my chosen path. And, for the most part, I have been. Probably a bit of a ‘Julia’, with a slightly non-descript creative consultancy career and a comfortable home life but with far greater marital equity and less rage than the Motherland character enjoys. (I mean, just where is her husband FGS any why hasn’t she left him yet is all I could think as I binge watched on iPlayer…)

What I hadn’t accounted for though was just how hard it would be, nor how increasingly necessary it would become, to maintain my career once our second child was born with disabilities.

With my first, it was easy. At 8 months, she went off to childcare and we both went to work. A small independent nursery followed by a nanny-share, then a regular pre-school, saw her through her early years contentedly. Childcare was easy to come by, if pricey, and I never doubted my ability to return to work.

With a disabled child, there were no childcare options at all.

As well as the absence of childcare, my calendar was overwhelmed with disability related commitments. Orange had no diagnosis so on top of the twice weekly physiotherapy appointments there were diagnostic appointments, medical reviews and assessments to coordinate.

Unable to return to work as planned, we had to sell our home and move in with my mum while we found our feet again.

In the end, it took me almost three years to build up again to full time work. I have only been able to do this because we moved across the country, have family help and both of us have jobs that mean we can work flexibly with just enough frequency to keep all the plates spinning.

But I am one of an extreme minority.

As Sophie Walker, the leader of the Women’s Equality Party and mother to a child with autism says in her piece today for Working Families, we are ‘a small – and very grateful – minority‘ and yet still ‘perpetually worried that it might all fall apart‘.

According to research from Contact A Family, I am one of only 16% of mothers of disabled children who are in paid work, compared to 61% of mothers with typical children.

Women with disabled children, and let’s face it, it is pretty much always women rather than men, are careering out of the workforce at an alarming rate.

And why?

  • The unavailability of suitable childcare for disabled children.
  • The lack of school wrap around care and school holiday care for disabled children.
  • The chaos of medical, health, social care and other appointments that the NHS and local authorities are failing to co-ordinate effectively for children with multiple and complex needs.
  • Cuts in already too sparse respite care and short breaks for disabled children. And the hilarity of the fact that local authorities will allow families to use these services to ‘have a break’ but we are precluded from using them to enable us to work – to bring in an income, pay the bills and to support our families. So, for many families, the cycle of dependency on the state that they don’t want continues.
  • Unavailability of appropriate schooling – The BBC revealed last week in their #BBCsend focus that more and more parents of disabled children are being forced into home schooling because the appropriate schooling for their child’s needs just doesn’t exist.
  • Inflexible employers who do not acknowledge that both men and women have a role to play in child care, particularly when there is a disabled child in the family.
  • A lack of understanding by employers of carers’ needs and rights in the workplace.
  • No provision for paid carers’ leave.
  • Tiredness. Caring for a disabled child often means broken sleep, heavy lifting and managing behaviour. Without adequate support, this can leave parents with very little else left to give.
  • Ill health. Disability and complex medical needs come with a great deal more time spent in hospital than most.

It’s a complex picture, but certainly the first eight items on the list are surmountable with changes to the law and education, health and social care systems to support us.

It might sound expensive but cost analysis carried out for Working Families by Oliver Wyman showed that even just one small change in employment law – a right to adjustment leave for the parents of disabled children – could result in a potential annual net gain to the economy of up to £500 million.

Working Families wants to hear from parent carers about their experiences of combining work and caring. It will help them to campaign to help more parents to get into or stay in paid work. The more evidence there is, the louder the voice.

If you are a parent carer who works, or who wants to, please fill in their survey by 13 December to have your views included.


Alternative Advent: a sensory countdown to Christmas

Alternative Advent: a sensory countdown to Christmas

In the 19th Century, German protestant Christians counted down to Christmas by marking 24 chalk lines on a door and rubbing one off every day in December. Two hundred years on and advent calendars have become an industry all of their own.

If you’re a parent of an eight year old girl, you may have fought and lost the same battle I did over this year’s must have £25 Smiggle advent calendar. It’s not chocolate this generation of children crave at advent, but artificially scented stationery.

And if you’re a partner to a 30 or 40 something man, you may have fought and lost the same battle I did over an enormous portion of the kitchen being given over to a Beer Hawk advent calendar. Basically 24 bottles of beer in a box, dressed up to look like an advent calendar.

For Orange, neither beer nor whiffy stationery is on his wishlist, and chocolate is a no go zone. But he’s 6. And he needs an exciting countdown to Christmas!

So this year we have revived our idea to create him a sensory advent calendar. Throughout the month of December, Orange will have a different Christmassy sensory experience each day – a taste, a smell, a sound, a feeling – to get him into the Christmas spirit.

Last time we did a sensory advent calendar, I was super organised and planned what we were going to do each day, making a box of sensory delights including cinnamon scented play dough and peppermint scented rice bags.

This year, I’m well behind the curve. Something to do with juggling my job, re-inventing my freelance career and managing the mountain of school-led Christmas to-dos.

Luckily, my much more organised friend, who writes at The Inclusive Home, has created a #sensoryadvent countdown for us to join in with.

Sensory advent

Day one of #sensoryadvent is music. One of Orange’s favourite things. We started off the fun with a musical plush Santa soft toy.

The music hit the mark, but Santa?

Well, let’s just say I hope the cats like him more than Orange did. Or his Christmas could be pretty lonely…!

We will be sharing Orange’s #sensoryadvent on Instagram and Facebook. Tomorrow is ‘pine’. Any ideas where to find a pine cone in Cornwall?!