Let’s talk about work, baby (AKA ‘This is long, better fetch yourself a cuppa’)

I have to be upfront and admit I’m a little more than fashionably late to the party on this topic. An overflowing work schedule, trying to find a nursery for young Orange (another whole post), home adaptations work requiring more than the usual quota of project management (yet another whole post, you want to put our oil tank there, really?), and of course daily life with a SWAN in tow has meant sitting down to write has skidded fast down my ballooning to-do list.

While I have been refereeing disagreements between builders, drafting a gazillion PR plans, form-filling and wrestling with lycra suits (Orange’s, not mine), an emergent voice from the hive of Working Mothers of a Disabled Child (WMOADC*, snappy, huh? Thanks Are you Kiddingney) has been gathering over something incredibly important.

Work.

Paid work. Employment. Self-employment. A job. Entrepreneurship. A career. That dreadful misnomer beloved by the likes of the Daily Fail, having it all.

Thanks to the strength of previous generations of women who have challenged the status quo, being a ‘working mother’ is more welcomed than sneered upon in today’s society. Great strides have been taken, enabling women to take on the (sometimes farcical) juggling act that is bearing children and maintaining a career they either need, or desire, or both.

But under the surface of the fractured glass ceiling stands a group of women whose situations don’t fit the typical mould. And for whom the system is still erecting barrier after barrier to the world of work. If you have a disabled child, the glass ceiling, or even the office door, can be all but inaccessible.

One might assume, when the barriers to work grow ever tougher to scale, that there is an agenda at play to actively discourage mothers of disabled children from contributing to the country’s rather parched public coffers. As if once you bring a child with disabilities into the world you are cast aside into a net marked ‘other’, with an assumption that you will willingly renounce the normal things you once did, like going to work to earn a living, consigning them to the confines of the memory box.

Nobody without a gift for the occult can predict entirely what lies ahead in their life. I’m pretty sure I’m not alone in my teenage experience of sitting in the career advisor’s office, sifting through lever arch files of (deathly dull) career profiles without one twinkling of contemplation for what might happen to my as-yet-undecided-upon career if I, at some unknown point in the future, gave birth to a child with disabilities.

As it turned out, I was lucky. I blundered, vaguely, into a career that now allows me to work in some pretty fanciful and flexible ways. Actually I was lucky twice over in that I also have the support of family. I have extra pairs of hands to take care of Orange and help manage the full-time workload of therapies, appointments and admin while I skip off in heels to bring home a little bacon and stimulate my mind away from a descent into dark chaos.

I need and want to work but it is my own, providential personal circumstances allowing this to happen. Should I have pursued a career that required me to be employed 9-5 5/7, or if I had been reliant on conventional childcare for Orange, this happy house of cards would never have made it above ground zero.

To give a little context to the uninitiated, a little over a year ago, I posted this little doodle. An idle hour spent trying to capture in illustrative form, the scope and scale of the demands of being a parent carer to an undiagnosed child.

The response was overwhelming. Words of compassion, sadness, anger, comradeship. It was all there. As Orange grows up it’s becoming ever clearer that the demands of caring for him, while they change continually, will not lessen. If anything, they will probably grow.

Managing all this extra, unwished for but suddenly compulsory life ‘stuff’ that goes with the territory of disability, means that for many mothers of disabled children (and some dads, I haven’t forgotten the dads), having a job or career can become an impossibility. For many, the barriers are insurmountable. The challenge is described with great eloquence, clarity and grace here, if I could command every politician in the land to read this blog and the links that follow, and act on it, I would.

There are, of course, WMOADCs* like me who have been able to cling on to a career through a chance amalgam of fortunate career choice, family help and support, the current health of their child and sheer, dogged determination. Not without challenge, guilt or mind-fogging exhaustion but cling on we do. We’re the 16% versus the 60% of mothers of typically developing children who return to work post-baby. We are a distinct subcategory.

Our WMOADC* status is hard fought for and some careless critics may opine that we take on too much. But work we do. For financial security. For sanity. For independence. For normality.

Every mother of a disabled child should have the right to work, but if you’ve ever tried to find a nursery place for a child with severe epilepsy, or who is fed via tube, who can’t move independently or who has a packed schedule of weekly appointments, you’ll know that support from the system to do so is just not there. I give you some facts:

  • Funding for one-to-one support in nursery, beyond the rudimentary 15 hours a week for 3+yr olds is absent. For children who can’t eat, sit up or stay safe without constant adult support there is nothing, nada, unless a parent can fund full-time continuous one-to-one support in nursery themselves.
  • Specialist nannies with experience of managing the needs of complex children are like gold dust. If you can find one, you’ll need your very own gold reserves to cover the cost.
  • There is no ‘wrap around’ care at special schools. Transport provided for disabled children to get to and from school will only collect and drop off to the child’s home, so someone needs to be there to greet them. Oh, and school holiday care? As rare as hen’s teeth.
  • Carers allowance (embarrassingly pitiful as it is) goes poof into thin air the moment you earn more than basic pin money. AKA, the ‘benefits trap’.
  • Overloaded NHS and Local Authority services are not resourced or set up to fulfil the needs of a disabled child and accommodate the diaries of working parents. They’re just not. Not just that, but the system expects and requires that a parent, with legal authority for the child, is present at any appointments where important decisions need to be made. Medical tests, for example.
  • The employment world is still surprisingly hostile in many ways to working parents, even common or garden ones who are not shackled by the inconveniences of disability. Making work work, and making work pay is often a monumental challenge for parents, even without the complications thrown into the melee by disability. Present it with a disabled dependent and all of a sudden doors begin to close.

Work, all to often, just doesn’t work. And the consequences, both private and public, are enormous. Would-be WMOADCs* are catapulted unceremoniously in their ‘other’ net into a downward spiral of home-bound benefit dependency, often against their will.

Of course, our current government (and supporting media) is quite happy to perpetuate the myth that ‘people on benefits’ are to be minimised and scorned, with no consideration for the life path that may have brought them there.

No consideration for the fact that there are mothers all over the country, unable to find a way to return to work after having a disabled child, for whom nursery places are unavailable, specialist nannies beyond the reach of all but the wealthiest, and employers unwilling or unsympathetic to accommodating their needs for flexibility. Mothers for whom work is, in all likelihood, essential to maintaining the family home. Paying a mortgage. Meeting the rent.

All too often, house keys are being handed over in exchange for a place on the council housing list. Debts accrued beyond means. Carers allowance stretched to feeding a family. Housing benefit claimed where once a tax-paying income was earned.

A little-talked about ever decreasing downward spiral. One that is real. Happening right now to families who previously may have sat comfortably in the top 10% of earners in the country. But our voices are largely falling on deaf ears with only the disability-friendly Guardian giving the issue any recent page space .

Us WMOADCs* and would-be WMOADCs* need an ambassador. A high-profile advocate to amplify our voice. We need a manifesto. For support. For common-sense. For change. For mental-health and social cohesion. For the greater economic good.

When I sat down to write this I couldn’t think of a single politician in office who I would trust to take on this baton. Public life is currently found urgently wanting of figureheads with the clout, intelligence and lack of self-involved-puffery necessary to do this issue justice.

I’m sure some may disagree with me on this but in my mind there is, perhaps, only one potential advocate in public life with an inkling of WMOADC* reality. SamCam. Wife to a pretty unpopular PM she may be, but she has first-hand experience of life with a disabled child. She also has first-hand experience of being, for want of a better word, a ‘career woman’. While her circumstances may be enormously privileged, she has the profile and sensitivity to take this issue on headfirst.

Alongside this blog post, I will be writing directly to Samantha Cameron to ask for her input and support. I will use this space to update on how this little line of enquiry goes. Perhaps I’m naive but I simply can’t sit on my bottom and do nothing for the thousands of parent carers pushed aside by a system replete with holes and booby traps.

It doesn’t have to be this way but won’t change without input from influencers and policy makers willing to open their ears and think creatively.

In the meantime, I strongly encourage you to sit down with a large cup of tea (or perhaps gin) and read some of the blog posts my WMOADC* and would-be WMOADC* counterparts have penned.

Nice Work if You Can Get It by Are You Kiddingney
Dear Mr Gove (and other assorted pals) by Gingerbread & Sunshine
How Can Work, Work? by One Off Ordinary
Working…with a disabled child by It’s Small’s World
Work, Kids, Special Needs. Making it Fly by Rosy & Bo

A conversation has been started… The invisible women are stepping forward to centre stage. Watch this space.

* copyright Are You Kiddingney?

Well hello there…

Hello. It’s been rather a long time hasn’t it? You know it’s very possible that in the months past, I may have forgotten how to blog, so please bear with me.

First off, I know I owe it to you to give some semblance of explanation for our absence. The beginning of this tale is a happy one. It started with a few sunny days, which morphed into a few sunny weeks, and quite for the first time since my own childhood, we spent every spare moment life offered outdoors. A joy and a bind, (but not in equal measure, you’ll be glad to hear…) A joy to share sparkling summer days with family and friends, lazy afternoons with nothing to do but swim, bbq and soak heat and goodness from the sun into our skin. A bind because, well, nothing else particular got done…

Except for work, which did its devilish best to run roughshod right all over our shiny, happy summer. Less so mine (although it had its moments) but more that of Mr Mavis, who is rather more familiar with the dreary tarmac of the M4 and trudging tracks of the Cornish Riviera line than he might prefer. And PowerPoint.

Writing in retrospect, actually, I’m downplaying the impact that our work lives had on our summer. My memory of summer 2013 will be more beach than boardroom but quite honestly, without the glorious weekend afternoons spent dipping in and out of the sea, and lingering about on the sand, in truth our summer would have been buried in work commitments and barely recognisable as a life. With no option to dial down the work hours (raising a SWAN ain’t cheap and our main source of family income sure isn’t paying what it should, no names named oh phone company dear to my heart) we just had to keep on keeping on.

All this would be fine. Fine. But were it not for a small boy whose needs are rather, what you might call, intense. Appointments, therapy, more appointments, more therapy, and all that delightful admin shiz in between. You’re familiar with the score by now. We have no choice but to keep the show on the road for Orange constantly. Every day of every week of every year. And yet as the summer wound along, I found it harder and harder to keep up with everything. A spiral of inertia, I guess. I lost my drive, my enthusiasm, my hope, just a little. Therapy became something I just didn’t want to do. I felt guilty for letting him down. My little boy who really, quite honestly, is mostly dependent on my input to allow him to develop at all.

Instead of being the boundless cheerleader and perpetual provider of appropriate stimulus and input, I found I could raise little energy to do anything. Orange’s four daily reps of his Snowdrop programme (brushing, squeezing, hand massage, spinning, listening, visual tracking and repeat), his daily torture hour in his standing frame, his daily all-fours exercise over a rubber tube, box-sitting practice, assisted crawling, directed play, Makaton signing, finger food practice, repetitive singing, storytelling and assisted pointing all of a sudden didn’t seem so manageable anymore.

By July I was teetering on the edge of reason, and by August, tipped over the edge by the school holidays (read, The Beep at home all day, every day and those of you who know her know just what this means) and some quite unreasonable but quite in-character behaviour from some dear relatives of ours, I needed a break.

So, Orange and I took some time off. Two whole weeks. No appointments. No therapy. And certainly no form filling. Although the Department for Work & Pensions must have a deep sense of irony, you can always trust a Disability Living Allowance renewal form to land on your doormat the very day you have sobbed all over your Portage worker and decided a break might be in order (don’t worry, I still haven’t filled it in)…

A break was just what we needed. We hung out with old friends, indulged in a little cliff top camping, ate, drank and swam. And switched right off from our world. It had got so bad, I couldn’t even face writing this blog. And while we are now back in the game in grand style (new Snowdrop programme, sensory room kit ordered, new standing frame going great guns and daily therapy right on track), I have learnt a valuable lesson. Breaks are vital. I have another planned right about round Christmas.

Until then, expect plenty of goss from the Orangery. The boy is bigger, badder, and bolder than he was before the summer so all that lounging about on the beach must have done him as much good as it did us. Loud, strong-willed and mischievous he’s becoming quite the toddler… here he is, giving me a right good telling off… which as well as a break, is quite probably what the doctor ordered.

 

What do SWAN mothers do? Especially when it looks like nothing…

Earlier this week, a good friend of mine over at Complicated Gorgeousness wrote a marvellous blog post about the realities of motherhood and its ability to blow an enormous hole through what you previously recognised as a social life and change your perception of and relations to others unfathomably. Inspired by this popular cartoon that has been doing the rounds on Facebook, many of us SWAN mums have been nodding quietly in agreement that even the relationships you cherish and want to foster can end up a little dusty when you have a child with additional needs.

I’ve wanted to write about this particular subject for a while but every time I sat in front of the keyboard I found myself feeling like I was just making excuses for being a part-time friend and an absent family member, yo-yo-ing in and out of social groups and relationships dependent on what particular new surprise or admin marathon has been on the Orange Agenda. Nobody really wants to know the minutiae of my day, no matter how different it might look to many. The hours of therapy, phone calls chasing tests and appointments, coaxing a small boy to learn how to eat, talk and stand, driving miles in all directions to attend said tests and appointments, and the weeks spent in a mind fog dealing with the emotional fall out of new information or educated speculation about Orange. In truth it just sounds like whining, self-absorbed claptrap. The sort of thing that appears on a Facebook status stealth boast imparting all the details of one’s day thus ensuring nobody can think they could possibly have been as busy as you.

Plenty of people have busy lives and while Orange brings with him an unpredictable pick n’ mix of extra challenges, it didn’t feel right to stick my hand up in the air that bit higher and declare myself the busiest of them all, because it just wouldn’t be true and would have left me looking like a prize twit.

When I saw the frazzled mother cartoon doing the rounds, I realised just what it is that leaves me often unable to reply to a text message within a fortnight of receipt, or look at the mail until it has been sitting, wedged in at jaunty angles in the post rack, for at least a month. Orange, with all his Great Unknowns, is like having a newborn for the first time, every day of your life. If you are a parent of small children, the memory won’t be too fuzzy-edged or rose-tinted just yet, and you will completely get where this is going…

Remember those first eye-blurringly, scared-I-might-break-him, exhausting early weeks when you had your first child? The magnitude of emotion and sudden weight of responsibility? The minute-by-minute challenge of having to learn on the job to care for a tiny, vulnerable person who can’t tell you in a conventional manner what they need? The never ending stream of missed phone calls, unanswered texts and Christmas cards that never quite made it to the post box because you were all consumed with managing a living, breathing human who was entirely dependent on you day and night?

Never mind the sleep-deprivation and wondering if you’d ever be able to pee in peace again without a small person attached to you or screaming relentlessly in the next room, you were so enwrapped in the cocoon of new parenthood that there just wasn’t quite space yet in your brain to accommodate all the other aspects of your life? But then gradually that tiny person began to develop a little independence, you settled in to your new stride in your parenting role and piece by piece, you found there was room in your timetable for your friends, family and pastimes after all, and even a little time to squeeze in some new ones too? You could plan a big night out, read a book, work out, have house guests, paint your nails even. All things that were unthinkable while in the throes of very early parenthood.

Only caring for Orange, as rewarding and entertaining as it often is, feels very much like being stuck permanently in that no man’s land, new parent vacuum where really not much gets done other than making sure the baby is clean and fed. The vacuum has outstayed its welcome, somewhat. Not only is he two now, but he’s also my second child. I should be taking this one in my stride, multi-tasking like a demon, managing to climb ever higher up the career ladder, keeping a perfectly turned out and coordinated home and wardrobe, remembering social niceties like thank you letters, flowers on birthdays and regular phone calls to loved ones, breezing through ever more jam packed schedules of extra-curricular activities and play dates, springing out of bed at 6 to throw out 100 press ups and bake muffins all before the kids wake, right?

Instead we are in permanent survival mode. Every week brings with it a new therapy task, the development of a new and unwelcome sensory issue (eating was the latest one and boy was that dull), an ever changing and complicated list of symptoms and things to be tested. Things that have been ruled out are back on the table, new possible diagnoses floating about in an unpromising manner but necessitating many hours spent researching, learning, understanding and testing out how they might feel when applied to our lives, to Orange.

And as Orange gets older, bigger issues present themselves. Issues that don’t have an answer yet and that bring with them that same vast blanket of responsibility and consciousness of vulnerability that a first newborn imparts. The latest and greatest on my mental worry list are schooling (the statementing process is a Night. Mare. and bureaucracy a source of huge angst), diagnostic testing (there are frightening and degenerative conditions our geneticist needs to rule out), and the will-he/won’t he see-saw of wondering what Orange’s future mobility and cognitive abilities will be that have the potential to entirely change the landscape of our family future.

The constant merry-go-round of appointments also fulfils its part in ensuring we never quite break out of survival mode. This week alone, Orange has six appointments which not only eats up significant amounts of time just attending and getting there and back, but the preparation of questions and information beforehand, and the comedown afterwards means there is often little time, brain space or emotional capacity left to deal with anything else, no matter how welcome a distraction it might be. On top of an unprecedented period of intensity at work for Mr Mavis, and much new and exciting work being hurled in my general direction, we’ve warped into survival mode overload for a while.

I’d like to extend an enormous thank you and a huge hug to the lovely friends and family who continue to make allowances on our behalf by including us and keeping in contact, offering help, support, fun and love even when we’ve failed miserably to do the same in return.

You know when you had been walking a newborn around the house for what seemed like days on end, with no time to shower or cook a meal, and a thoughtful friend shows up with a home-cooked lasagne and takes the baby for half an hour while you wash your hair? And how grateful you were? That’s pretty much it. Right now, there is an ever growing list of fairy godmothers in our lives proving themselves to be lifesavers, taking The Beep of an afternoon while we appointment juggle or hoof it to hospital with Orange, mowing the lawn, making me go for a swim in the sea and relax for half an hour when I was finding excuses not to, pouring wine, and helping out with Orange’s therapies when I’m all out of puff to coax, cheerlead, sing and praise.

It is now ten past midnight and bed is beckoning, so I will leave you with a little picture of the boy himself enjoying some of the glorious sunshine down here on the south coast of Cornwall. Here he is, chilling on the beach this afternoon after being a very good boy at appointment number five this week, visiting the specialist dentist in Truro. He flirted with her, of course 😉

 

Getting the balance right

Before Orange was born I had planned to take only two months maternity leave and then get right back on the career horse. We had a big mortgage to pay and I had a successful consultancy business to run. There was no time to sit about breastfeeding and eating biscuits. Well, of course, things didn’t quite work out like that…

In a whirlwind of worry my weeks soon became filled with trips to the cranial osteopath, private physiotherapy, endless hearing tests and back and forth to the GPs to try and work out what was going on with Orange. At that stage we really had no idea and he had no medical problems to speak of, but he had failed many hearing assessments, couldn’t hold his head up and was existing in a little world of his own. He was quiet, placid, still. Pretty much all the time.

If I am honest if was the fear and worry that crippled me more than anything else. I just didn’t feel emotionally or mentally able to even think about returning to work. The bank account was running seriously low but I couldn’t do anything about it. I knew that Orange needed my full attention.

For a good long while I reconciled myself with not going back to work. Orange needs physical assistance with sitting, rolling and standing pretty much all day long. There is no way I could put him in a nursery. And the sheer number of appointments he has would scupper any attempt by me to hold down a job. So Orange’s care, physiotherapy needs and admin became my job.

The problem with this is that it has become so all encompassing. If Orange has a bad day or if a letter from one of his specialists comes through I have nowhere to escape from it. My brain needs an outlet. And more than my Kitchen Aid and writing notebook can offer.

Trying to find a balance between being Orange’s full time carer and also reigniting a career for myself is one of the hardest conundrums I’ve ever faced. I dipped my toe in the water in November last year by taking on a project for an old client but it was too much. I ended up working until 1am most nights, leaving Orange to kick about in his cot in the day while I wrote PR plans and leant heavily on my husband and my mum to look after him while I ran brainstorming workshops and media training sessions. I enjoyed the work but it came at a huge price. Since then I have done nothing much. I have festered. Done nothing for myself and sunk into a place where all my brain is capable of is surfing about on twitter of an evening or perhaps reading a Guardian article. Sinking into a mode of inertia. Unhealthy, unhappy, unproductive.

So I have taken on an experiment. An exciting one. I have a new client and am working on some very exciting plans for the Paralympics. Today has been brilliant. I am working from home, The Beep is at nursery and I have fitted all my work around Orange’s needs. He’s had his physio visit, we’ve played, sung and eaten. He’s napped while I’ve worked, client conference calls and all. So far so good. I feel very lucky that I am in a line of work where I can take on projects on a flexible basis. There are plenty of mums of children just like Orange who would love to work but for them it’s just not an option right now. There just isn’t the support for parents with children who have complex needs. It is, very often, easier and cheaper not to work.

I have often moaned about my chosen career path. For now I am going to put all those negative thoughts to one side and ‘just get on with it’. The work is interesting and if I am organised and confident enough in my own abilities I can do a damn good job of it. I need to feel that sense of achievement again.

For now, I’m going to close the Macbook, make a cup of tea and spend the rest of the day playing with my boy. With a renewed sense of self and a feeling of purpose. Who’d have thought that work would become such a positive outlet?