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

How can parent carers of disabled children keep their careers?

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.

Any 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

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?!

 

Why do we need special schools?

Why do we need special schools?

It’s a grey, cold morning in November. The sort that really ought to be a mandatory duvet day. It’s hard to get going and the thought of sticking a limb out from the warmth of bed into the cold air is far from inviting.

But Orange is up. Chatting to his toys in his room and ready to start his day.

In this house, we are lucky. Every day Orange goes off to school smiling. He can’t wait to go. Once the uniform is on and the porridge is eaten, he’s looking out the window for his taxi and giggling all the way down in his lift.

For Orange, school is a little different than it is for most children. Unable to talk, walk or hold a pencil, sitting in a conventional classroom would see him lost and isolated. Even with 1-2-1 support, the academic curriculum and bustle of a typical school day would leave him unable to learn, or to join in with the other children.

Beyond pre-school age, mainstream education just wasn’t an option, as much as we hoped it might be.

A school day for Orange doesn’t include grammar, dictation, times tables, French or computer programming like it does for his sister. But it does teach him to access his world, to use his body, to be creative, and to be confident and social, in the very best ways he can.

Instead of learning to read, he is read to. With raucous laughter, his unadulterated joy at a ‘That’s not my…’ book, Supertato or Oh No George shows us that while he may not be able to read the words on the page, the narrative of a story is far from lost on him.

Instead of phonics, he takes part in ‘communication group’, where the children follow Makaton signing or learn to press a button to make a choice between two simple objects.

Instead of running about in the playground, he splashes in the hydrotherapy pool, the only place where he has meaningful independent movement.

Instead of PE, he has rebound therapy, where he is hoisted onto a trampoline to bounce, to feel feedback from movement in his limbs so that he recognises they are there.

Instead of computer programming, he goes to the dark room and uses ‘eye gaze’ technology to learn about cause and effect.

Instead of sitting in a classroom chair, he uses specialist seating and a standing frame to ensure his joints stay healthy, despite his inability to weight bear.

Orange can only do these things because he is in the right special school, with specialist facilities and specialist teachers to make it possible.

They also make it possible for all the children to do normal things that wouldn’t be possible in a mainstream school.

Like school plays. Every child in the school has a part, even if they have to be wheeled onto the stage on a bed because they have extreme medical or physical needs.

Like music and art. Even the children that cannot use their hands independently are helped physically to make music, to paint and do craft.

Like having lunch. Orange goes to the school canteen for his lunch just like any other child. His school provides a specialist allergy free, mashed menu for him that he is spoon fed carefully by an assistant. Some of the children are tube fed, which the onsite nursing team take charge of.

Like school trips. All the children can take part, because there is specialist transport and enough specially trained assistants to take care of the children’s needs. Orange has enjoyed trips to the theatre, to a specialist music studio, and to a sports centre to take part in team sport.

And his personal care and medical needs are catered for in a way that would be impossible in a mainstream school.

Every room is fitted with ceiling track hoists so the children can be lifted.

Every classroom has changing facilities for the children who are unable to use the loo.

Every child has the support of the on-site nurses. For us, we know that he is safe and in experienced hands if he has a seizure at school.

Without a special school like this, Orange would not be able to go to school at all. Which is the increasing reality for growing numbers of children with SEND.

There are simply not enough special school places. And it’s a smoke and mirrors bunfight of assessments, legal letters and negotiations to secure one of the few that are available.

For Orange it took 18 months.

18 months to secure a place at the one school within a 60 mile radius that could cater for his needs.

During that time we were told by various people in the local authority that ‘there were no places at the school’, that ‘they don’t take Cornish children’, that ‘we would never get a place’, and that ‘it would be impossible’.

We were told we were setting out to achieve the impossible by the very people employed to help us.

Were it not for help from the special education charity IPSEA, encouragement and support from wisened parents who have trodden this path ahead of us, legal guidance from a specialist solicitor and sheer bloody minded determination we might never have got there.

The day we got the call to say Orange had a place at the school, the three of us – me, my husband and my mum – fell into each other in tears of sheer relief.

Few families come through the experience of securing a special school place or an Education, Health and Social Care Plan for their child unscathed. There is huge financial and emotional cost.

Many of them never get there. Figures from the BBC this week show there has been a 64% increase in families in England resorting to home education because they feel so badly let down by the system they are trying to do it alone.

That’s why the BBC is running a special feature all week on SEND.

You can follow the coverage on BBC Breakfast, Radio 4 and Radio 5 Live every morning this week to hear about how the system needs to change and what you can do to help, by lobbying your MP and your local authority for change.

Follow #BBCsend on Twitter to join the conversation.

 

 

 

Why this SEND mum is leaving her job in the NHS

Why this SEND mum is leaving her job in the NHS

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 culture driven too often by risk and finger pointing, not opportunity and teamwork 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.

But 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.

But 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 (non-public sector) work waiting for me just the other side of Christmas. 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 here. I don’t need to work inside the system to do it.

 

Undiagnosed: unexpected but not unusual

I’m often asked if I knew when I was pregnant that Orange would have disabilities. For many reasons that I have written about previously, I’m glad that I didn’t. His disabilities were completely unexpected.

When I started to realise that life might not be straightforward for Orange, I wanted to know why. Why was it that he couldn’t move his head, spluttered when he fed, slept all the time and did this odd stiff banana pose when we picked him up? Why didn’t he seek out my gaze like his older sister had? Why didn’t he smile? And what about that failed newborn hearing test?

When I googled, the answer I got was cerebral palsy.

I spent the first weeks of Orange’s life terrified that he had cerebral palsy and that no-one else had noticed.

Of course, over time, they did.

“I’m not sure about his muscle tone” said the GP at his 8 week newborn check. “Come back in four weeks, won’t you”, he said.

“Has he woken up yet?” said friends, half jovial at the fact my second baby slept so much he was more than making up for the pinned-eye waking torture of my first.

As the months rolled on, and Orange missed milestone after milestone, we were whipped into a system of genetic testing, brain scans and neurological assessments.

Nobody mentioned cerebral palsy. In fact, no-one mentioned any diagnosis at all.

At the time, I held on with hope that if a diagnosis could not be found, that meant Orange was fine after all. He would catch up with his milestones, it was just the stiff neck from birth causing his delays, that’s all.

Orange was almost one before anybody said to me that he would almost certainly have difficulties for life, that we wouldn’t know what they would be until he got bigger, and that we might never know the reasons why.

Until that point, I had no idea that ‘undiagnosed’ was even a possibility for a severely disabled child. And at the time, I also had no idea that there were others in the same nameless boat.

I had so many questions.

Would he walk? Would he talk? Would he need to go to a special school? What about epilepsy, I’ve read that’s a thing for lots of children with disabilities? How will I know if he’s having seizures? How long will he live?

Nobody could or would answer them.

I tried to answer them myself by reading every medical study and report available on the internet about rare genetic syndromes. But all that could be found there was fear. So I stopped.

I asked geneticists and neurologists about specific tests and syndromes. But all that could be found there was the result ‘normal’. Every medical test that Orange has ever had has recorded the result ‘normal’. So I have stopped that too.

There are no answers, except those that Orange is able to give us himself.

He is six now. He hasn’t walked. He hasn’t talked. He does go to a special school. And yes, he has epilepsy. And boy did we know when that started.

Without answers, for a long time we had hope that Orange would catch up. When he didn’t, we learned to replace that hope with a new one. That life could and would be fulfilling and wonderful anyway.

Orange has shown us that what an academic medical journal may have led us to believe would be a difficult and frightening life is anything but. They don’t tell you about the fun. The laughter. The sweet little habits. The kind hands. The bond you have with a child who needs you on a deeper level than most.

They also don’t tell you about the wonderful people you will meet when you have a child with disabilities. Kind and dedicated teachers who see your child’s personality and achievements and celebrate them with you. The respite carer and passenger assistant on school transport who become like extra grandmas.

The families you will meet, sitting alongside you in the boat without a name.

The friendships I have made with other families who also have undiagnosed children are what gets me through when there is no answer to a difficult question. Because while our children may all be different, often we are all floating about in the same unknown territory.

And there are thousands of us.

Every year, 6,000 children are born with an undiagnosed condition. SWAN UK is the only charity in the UK that provides support for families with an undiagnosed child.

It is through SWAN UK that I have made lifelong friendships. Together we celebrate our children, help each other out with ideas for equipment, home adaptions, how to handle meetings with medical and council staff, share frustrations, support each other through grief and loss, look out for each other’s mental health, laugh together, cry together.

But while our group is now at over 1,000 families, we know there are so many more who may need that support.

Today, it’s Undiagnosed Children’s Day, and we are asking people to help us find other families with undiagnosed children who may need support and friendship along this unexpected, but not unusual, path.

So if you know someone who might be in our shoes, put them in touch with SWAN UK.

Happy Undiagnosed Children’s Day!