The Invisible Woman: Working with a Disabled Child

We are largely invisible. When we do get on other people’s radars, we are sometimes met with looks of amazement, admiration and pity. More often, in my experience, we are met with disbelief and dismay. We are are a nuisance. We are judged frequently and are often founding wanting. Because we are the working mums of disabled children. We are just not supposed to exist.

Most of us thought and expected that we would be part of the 60 per cent of mothers who work at least some of the time once our children were born. But suddenly our lives altered in ways that none of us could imagine back in those happy days. And now we are some of the staggeringly small 16 per cent of mums with disabled children who work.

We are a subcategory. With the emphasis very much on the sub.

For us, work is many things. It is a necessary evil to keep a roof over our heads and get the bills paid. It is a way to meet the extraordinary and unexpected costs of providing for a child with additional needs, from specialist feeding and seating equipment to major house alterations and house moves. Work is our sanity saver, a place to gain a bit of head space in a life that is often good but also utterly exhausting in ways I never understood before the birth of my son. A life where everything that matters most is on the line. But work is not respite, by the way. Don’t get me started on that. Work may give me a break from my caring responsibilities, but it is hardly restful.

Work is a way of clinging on to a piece of ourselves, the bit of us that isn’t fully accounted for by the name ‘Mrboo’s Mum’, by which the army of thousands that are involved in my son’s care call me, much to my irritation. Work is a bit of us that isn’t defined by our role as carer, the name we are assigned at our children’s birth and that insidiously robs us of the right to call ourselves plain old parents.

And work is a battlefield. We rely on employers understanding the benefits (to them as well as us) of flexible working, just as they rely on our competency. And let me tell you, looking after a disabled child is a daily and never-ending boot-camp in training us to achieve perpetual efficiency, multitasking prowess, and research skills that most PhD graduates (I know because I am one) don’t have. Take it from me, you want us in the workplace. We have skills in abundance. And we don’t have the luxury of being able to remember how to waste time. You’ll get your money’s worth out of us, I promise. Just as the state does. Many times over.

We also rely on, even if we sometimes give up hope for, the understanding of the NHS and other relevant service providers as we get handed with a day’s notice appointments at 11:00 on a working day. We rarely get this understanding, however. The assumption is that we must be full-time carers. (This is never assumed of our male partners, unsurprisingly.) How could we be so inhuman to be anything else? I do care for both of my kids full time, by the way. I just happen to be at work sometimes while I’m doing it. The assumption is that we are perpetually available for appointments and reviews at the convenience of others. Sometimes, we are even expected to be in two appointments at once on different sides of the same building.

I know this, because I have been told and experienced all of these things. I have been pulled up for being a working parent so many times since having Boo. I have been told by a receptionist that it would surely be better for me and my son if I did not work. I have been told by a support worker that I was ‘so brave’ to work when clearly ‘brave’, judging from the disapproving look on her face, meant ‘irresponsible’ and ‘derelict in duty’. I have been told that I am ‘unhelpful’ when I said that I couldn’t take a cancellation appointment at 24 hours notice that they needed to fill for what was a non-urgent routine review for Boo. (Incidentally the same thing happened three months later when I turned down a similar offer of a cancellation appointment that clashed with my daughter’s nativity play at school. Apparently not giving preferential treatment to my disabled child above my neurotypical daughter is another of my maternal faults.)

Moments like these are too numerous and horribly predictable to list in their entirety. Right now, my heart is beating fast with anger as I type them out. But at the time all of these things were said to me, I confess that they made me sob uncontrollably. I’m not a crier by nature, but I can’t swallow the tears when my love for my child is questioned. Maybe I can’t take it because the fact that I use the full flexibility in my job to be as hands on in Boo’s care as I can and therefore work 5 out of 7 nights every week, often well beyond midnight, means that I am perpetually exhausted. Tiredness and steadiness of thinking are not happy bedfellows. Maybe I’m just so ground down by battling the systems, getting appointments, accessing equipment and sorting nursery provision that I have lost my sense of perspective. Or maybe the reason I get so upset, is because the criticism is so unjust and, frankly, offensive.

For all this, I consider myself lucky. My employer is understanding. My job has a degree of flexibility built into it, as does my partner’s. We have battled for and successfully obtained 1:1 support for Boo at nursery. It is not enough, but the nursery and we work around it as best we can. Many are not so lucky. Of course, many mums of children with additional needs don’t want to work. I completely understand that. But I also know of at least a dozen mothers through my immediate circle of acquaintance that have been forced to leave good, fulfilling and important jobs for lack of adequate or affordable childcare or because they were denied access to 1:1 funding. I know many, many more of these women through the blogosphere.

And, as Sarah Collins, of First Touch NNU, a charity that supports families with babies in special care at St George’s London, notes, even if you have an ‘accommodating boss’ and work for ‘a child focussed’ company, things don’t always go to plan for parents who want and try to work. On only her second day back in her job in a children’s theatre, Sarah’s 18 month-old daughter was rushed to hospital with a seziure. ‘It began to dawn on me that paid work was not an option at that point in my daughter’s life’, she remembers.

We have been busily talking about the challenges and benefits of being the working mother to a disabled child on Twitter, Facebook and blogs for some months now. It’s a conversation that came into sharp focus in a wonderful interview Hannah Postgate, founder of Rosy and Bo, gave on Woman’s Hour recently. This has inspired a bunch of us to get together a round-up of our blog posts on some of the issues we face as, what our blogging friend at Areyoukiddingney calls, WMOADC (Working Mothers of A Disabled Child), from the prejudice we are routinely subjected to to the difficulties of accessing what we are told is within our children’s basic human rights: inclusion and education.

Enough already. We may be the minority, but we are not silent. We are not content to be talked at or about. We can speak for ourselves. And we want and need to be heard.

Please take time to read and comment on some or all of the posts below and if you know of others on this subject please email me (premmeditations@gmail.com) and I will add them.

Blog Round-up

‘Work, Kids, Special Needs – Making it Fly from Rosy and Bo

Returning to work is tough after kids, full stop. So Hannah almost felt a bit of a fraud bleating on about this topic, until she considered one of her children has autism and learning disabilities. Disabilities, hospital appointments and appropriate childcare all play a part in the difficulties mother’s like me face getting back to work. But there are also the barriers we face from employers, not to mention the sheer exhaustion and strain making it an impossible prospect for many mothers.

This is not something we can continue to leave unsaid, as Hannah writes. We need to talk about it, air it and try to change it.

How Can I Make Working Work?

This powerful and moving post appeared as a guest post on Premmeditations and was written by an amazing woman who wants to remain anonymous as she relates how the birth of her son left a family who had it all – a career, cars, a house – losing it all terrifyingly quickly.

Nice Work if you Can Get it from Areyoukiddingney

Not only does she have one of the best blog names out there, but she coined the acronym WMOADC. If you have no idea how working mothers of disabled children are sometimes treated by those who help us to look after our children then wait for the scales to fall from your eyes in this moving post.

Working Mum, Disabled Child, and the Myths Inbetween from Complicated Gorgeousness

With a combination of wit and pragmatism that only Alison possesses, here’s a post about how it can all work when you go back to work. And how it could be a whole lot better.

‘A Full-Time Mama’ from An Early Start

If you were thinking that the difficulties of returning to work and finding appropriate childcare when your child has additional needs are a British problem, think again as this lovely post from An Early Start, which chronicles the life and adventures of the amazing micro-preemie Jax, born at 23 weeks, makes clear.

‘Working with A Disabled Child’ from Itssmallsworld 

How getting back to work for the parent of a child with disabilities is made all the more difficult due to lack of governmental forward thinking and understanding. And thank goodness for some local common sense.

Dr Mr Gove (& Assorted Pals) from Gingerbread and Sunshine

If nothing else persuades you of the injustice and financial fuzzy thinking that lies behind the government’s policy towards families of disabled children, this post will. Let’s hope it wakes the MPs up, too.

Those Who Can, Do from Little Mama Said

No one is immune from disability hitting their lives suddenly and without warning. This moving post from Little Mama Said explores the irony of being a special needs teacher, not being able to teach after having a child with special needs.

‘Did They Allow Your Special Needs Kiddie into Nursery?’ from Mama Lewis

Mama Lewis shares her experiences of returning to work after the birth of the lovely May.

We Work! (We do. If You’d Let us) from Mama Lewis

A second and equally brilliant post by Stacie Lewis that poses some provocative questions that should be blissfully easy to answer: ‘Why is it less important that I work full-time than it is that my husband does? What does being May’s mother mean? Does it mean my life is not worth as much as hers?’

How Can Work, Work? from One Off Ordinary

A thought-provoking post from a fabulous mother of two (one of whom has additional needs and is now at school) on the logistics of trying to get back to work.

Let’s Talk About Work, Baby from Orange This Way

She tells us to sit down and have a cuppa to read this. But if this post doesn’t make you want to stand up and do something when you’ve finished reading it, nothing will. All you need to know about being a working mum to a disabled child, and much more besides.

‘The Chaos of SEN Childare’ from Premmeditations

This year new funding sees many disabled children able to access government-funded childcare for up to 15 hours per week. But have they thought this through? Here’s my experience of the battle for 1:1 care for our son at his nursery.

‘Nursery Provision for Special Needs – The Good, The Bad and The Ugly! from Tough Little Cookies

Can you only get a place for your little one if you know who to ask, how to ask and how to ask again (and again and again) if you are told nothing is available? For every working parent who manages to secure a nursery place for their child how many have to give up their job because adequate nursery support does not appear to be available? These are just some of the questions the mums of the Tough Little Cookies ask in this hard-hitting post.