The ‘WeWork’ mothers hit Westminster

Three years and three months ago, as I sat listening to the calming tones of hypnobirthing muzac in the garden suite at St Thomas’s Hospital, overlooking The Houses of Parliament, I never imagined that the baby I was about to give birth to would end up taking me to within the Palace walls.

Had I listened to the universe that day there were hints along the way that the little person making his way into the world would be important not just to us but on a greater scale. A (frankly odd and unexpected) hint of politics was thrown in to my stultifying hours in the labour ward and my soothing muzac was interrupted, momentarily, by the arrival of the Under Secretary of State for Health having a tour of the ‘superior facilities’… After she had asked if I was still alive as I sprawled myself in the only position that was comfortable across a faux fur birthing ball and into a bed full of plastic palm trees, I politely declined the suggested photo opportunity ūüėČ

And of course 8 March 2011 marked the 100th anniversary of International Women’s Day, also known in some circles as International Working Women’s Day, which at the time I had no idea would prove to be so pertinent. As friends marched below across Westminster Bridge and beyond, on that crisp, sunny Spring day, representing women’s continued pursuit of equality, I knew nothing of what was to come, and how this baby of mine would alter my world view and throw me into an interest in politics I never knew I had.

As you will know, I have been involved for a few months now in raising awareness of the issues faced by working parents, particularly mothers, of children who have disabilities. Last month, a Parliamentary Inquiry into childcare for disabled children, which facilitates parents to work, was launched, and it was with huge pride that I stepped forward as one of a small selection of working mothers of disabled children to speak at the Parliamentary Inquiry hearing, giving evidence to the group of MPs who are taking the Inquiry forward.

I, along with my compatriots at Premmeditations, Rosy & Bo, Mama Lewis and ABA4All, had a unique opportunity to share our, often challenging, experiences of securing childcare for our complicated children, with a view to influencing future policy and clearing an easier path for those who may follow in our footsteps. It was an honour and a privilege to do so and proved to be an intense, emotional and deeply worthwhile experience.

As a small group of women speaking to represent many thousands of our kind, while our personalities, lifestyles, children and careers are all rich in their variety, our experiences shadowed one another with eerie repetition.

Universally, we have struggled to secure adequate childcare for our children. Judged by those who are publicly employed to provide support for families like us, we have been told variously that it is ‘frivolous and selfish to return to work’, that ‘mothers of children like ours don’t work’, that the funding which has been perilously patched in to allow our children to access limited childcare with much-needed 1-2-1 support ‘could be pulled at any time’ and ‘can never be guaranteed for any longer than eight weeks’.

As we explained to the MPs, currently, there is no statutory requirement on childcare providers to take disabled children. As a reflection of that, the majority of childcare providers simply aren’t set up to cater for much beyond the most mainstream of needs. And those rare diamonds in the dust that do exist will tell you that securing funding for children who need specialist input and 1-2-1 support to enable them to be safe and included in a childcare setting is one hell of a crusade.

Until recently, we have relied 100 per cent upon my mum to provide childcare for Orange to enable us both to work. Being entirely upfront, this has been no small issue for our family. If we had stayed in London, we would have been unable to find any childcare with funded 1-2-1 support and a specialist nanny being well beyond our means meant it was impossible for me to return to work. Had we not acted quickly, sold our home and left the city it is almost certain we would have eventually lost our home. With work a closed door to me and now on one income, the finances simply didn’t add up.

We were lucky in that we were able to make the absolute best of a very difficult situation, relocating all the way across the country with mum who could help support us and facilitate my return to work. I will admit this has been a glistening silver lining to our sombre cloud, since Cornwall in all its beauty has brought us a sublime quality of life and our compact and unusual extended family unit is a very happy one.

But many families who wear our brand of shoes have not been in favoured situations like ours. They have lost their homes. They have lost their careers. They have sacrificed their mental wellbeing and more, and face a future more dependent upon the State than they ever imagined. All too often, this is for the simple reason that they could not access adequate childcare for their disabled children. It simply wasn’t there. It is for these families that we speak.

The testimonies we shared at the Inquiry hearing weighed heavy with tales of anguish, determination, fear and frustration. Spurred on by financial imperative and cerebral calling to continue with our careers, even the most searing tenacity to find stimulating, safe, sunny and suitable early years care for our children has not overcome the recurring issues we face of transparency over funding, poor communication from local authorities and equality of access to childcare.

I am not alone in having been able to secure just six hours a week term-time 1-2-1 support for my child. He cannot attend a childcare setting without this support. At age three, he is legally entitled to access 15 hours a week of early years education in a childcare setting however he is prevented from doing so because the Local Authority has only secured six hours of 1-2-1 support.

And should we need more than 15 hours a week? To enable us to do a job part or even full time? Without the considerable financial means to fund both daycare fees and the hourly rate of a trained 1-2-1 carer, which would render most jobs economically unviable, there is currently no solution to this puzzle.

There seems to be no clear, accessible, ring-fenced funding within Local Authority budgets to pay for 1-2-1 support. If there is, we, and many others, have certainly not been told about it. As a parent, it appears that Local Authorities are clawing randomly from pots of money here and there to cobble together some semblance of minimal funding but there is no transparency over what exactly our children are entitled to, or how to access it.

In addition, no-one seems to be want to answer the question over why our children are all too often denied access to the full 15 hours a week of preschool education that they are statutorily entitled to, because 1-2-1 funding to match that simply isn’t there.

And beyond funding and Local Authority bureaucracy, there are societal and attitudinal issues at play. Our testimonies at the Inquiry exposed stories of endless attempts to find childcare places for our children, to be told ‘we can’t cater for children like yours’,¬†‘we’d love to have him but our insurance won’t cover us’, ‘our staff won’t cope’ or ‘we’ll put you on the waiting list’¬†(the never-ending waiting list of one…guess who?).

Frankly, it seems from the testimonies delivered to the Inquiry last week that the world is often afraid of our children and so it pushes them away. Finds reason to exclude rather than include. In our part of the world, we have not found this to be such an issue but in the society we left behind in London and the South East, exclusion is a way of life. One parent enquired with dozens upon dozens of nurseries to find a place for her daughter only to be told ‘no, we cannot cater for your child’s needs’. No parent, in the face of a looming financial necessity to return to work, should have to face that.

As parents, we have all had to adapt to cater for our children in ways we could never have anticipated. We were not experts in disability when our children were born. We had no experience of epilepsy care, tube feeding, daily physio for hypotonic bodies, Makaton or appropriate play for the visually impaired. We learnt on the job. We skilled up. Because we had to.

So it stands to reason, as we shared with the MPs, that there is no grounds for childcare providers to deny they can do the same. But they must be granted support in order to be able to do so. After all, they have businesses to run and many of them run an already very tight ship. Our children are, admittedly, expensive. So what’s the answer?

Placing a statutory requirement upon childcare providers to accommodate disability will only work if the funding is made available to support them. Funding to make their premises accessible, funding to train their staff in accommodating additional needs and funding to provide 1-2-1 support for the children who need it. My view is that this funding needs to be ring-fenced at a national level, or we shall face an increasingly unbalanced postcode lottery in service delivery.

But why? Why, when the austerity belt is still squeezing us tight should we be throwing money at something so seemingly niche? Surely we should just accept our lot and suck it up, right?

For a moment, I will put aside my passion about my right to work, and I will give you this. If I work, I am economically active. I am contributing to society. I am paying tax and delivering valuable communications support to businesses to help them grow. I am a professional and an expert in my field. In the business world, I have value to add.

Beyond that, I am a homeowner. An independent purchaser of things, payer of VAT and customer of businesses. I have no need for social housing or support from the welfare system. It pays for society to have people like me in work.

And for Orange? With just the limited six hours a week of preschool that he does get, he is coming on leaps and bounds. His 1-2-1 and nursery team work tirelessly and lovingly to include him in activities, enable him to communicate, teach him to feed himself and move his body. They have the time and the energy to facilitate his development in a way I can only ever limply shadow. The more input he gets now, the greater his chances are of being able to walk, talk and function in society as an adult. The more independence he can gain for his future, the lesser financial burden he will be upon the State.

It is simple economics.

But I shall also leave you with this. I echo Mama Lewis’s words at the Inquiry hearing when I say that the other children at nursery adore Orange. They inquire sweetly as to his differences and then unquestioningly rest them aside and include him in their play. The staff can’t get enough of his cuddles and his infectious laughter. They love caring for him. I know I am not being presumptuous when I say that children like ours bring light and joy to those that surround them. Adults and children alike learn that those who are seemingly less able than themselves contribute to the group in softer, less obvious ways and that the group is a richer, happier mix for their inclusion.

Mama Lewis asked the Inquiry ‘Are these not the values we want to instil in the next generation?’ The values that will be the building blocks of a society that genuinely cares for those who are vulnerable.

There is a slowly dawning realisation that inclusion is actually good for everybody. But this dawning is fragile and at risk of being swept aside by national and local policies that appears hell-bent on whipping the carpet away from under the feet of those in need.

And so I will continue my involvement with the Inquiry as it proceeds, playing my own small part in working towards a future that is one step ahead of our own.

Thank you to all the articulate and brilliant women who stood together in giving evidence to the Inquiry. We made a formidable team…

Here’s a great little illustration of why we did what we did:¬†#wework


Under the spotlight: The Childcare Conundrum

Often, being the mother of a child more complicated than most, it can feel like the political agenda just misses us out. Passes us by, in favour of vote-winning rhetoric over house-prices, immigration, school hours and even the price of beer.

But this week, a small chink of light appeared in the form of a Parliamentary Inquiry into the provision and cost of childcare for disabled children.

Much has been said about childcare in political circles, of late. From the new tax-free childcare scheme announced by the government last year¬†to the escalating cost of childcare heralding a huge rise in ‘mumpreneurs’ (I’m not the only one who’s a bit ‘hmmm’ about that word I suspect…), childcare has featured heavily in the political and news agenda. But most of the powwow has slipstreamed fast over my head because, when it comes to childcare provision for Orange, we are still yet to pass ‘Go’.

With Beep we trod a mainstream path and it was, comparatively, an easy ride. We found a local childminder we liked and could afford, booked her in, and that was that. In the blink of an eye her needs were catered for and I settled back into the routine of work, knowing that she was safe and happy. When my consultancy work took off and my hours became long, we found a wonderful nanny who we shared with another family, and our girls spent their toddler days like little sisters, doing each others hair and squabbling over who played with the pink buggy, running about in the park, being grumpy at playgroup and heading up to town like mini city-sophisticates for days out.

At three, Beep started in the local pre-school, no question over whether it was ‘suitable’ or ‘met her needs’. It just was, and it did. And now she’s in school, she’s slotted neatly into after-school and holiday care with a brilliant childminder in the village. We have been able to find good quality childcare for Beep wherever we have lived, city, suburbs and seaside village. It has come at a cost, but it’s available. There are options.

For Orange, it’s not been as simple. The reality has been that, until now, we haven’t been able to find a single childcare setting that could meet his needs. Not in any of the three postcodes we’ve inhabited since his birth.

Orange is an easygoing, placid little boy. He is social and he positively shines in the company of others. He loves nothing more than being around other little children. He will smile, reach out for them and chat to engage their attention in a way he just doesn’t with adults. He knows he is one of them.

More than anything I know how much he would benefit developmentally from being around other small children on a daily basis and taking part in organised play in a way that simply doesn’t happen at home. Attending nursery or pre-school is more important for Orange that it was for Beep, I’d say. Quite apart from the fact that we need childcare to enable us to work, nursery is an essential learning experience for a child with developmental difficulties. And yet, here we are, at age three, and yet to experience that first day of nursery.

A year ago, I started enquiring about pre-school for Orange. Looking round places, talking to his Portage worker, researching online and chatting to other parents. But most of what we saw simply couldn’t meet his needs. The same obstacles kept presenting themselves. Step access. Echo-ey, noisy acoustics. No ‘safe zone’ for little ones with no mobility. ‘Free-play’ ethos which is basically just a bunch of loud kids running about in a room… Staff without the skill or time to spoon-feed a little boy who can’t chew. And who I would feel confident handing him over to, knowing that he could have a seizure and stop breathing while he’s there…

Finding a setting that he could a) get in to and around in a wheelchair and b) would allow him to flourish once he was in the door, while keeping him safe, was quite the challenge.

A few months ago we eventually settled on a nursery in a nearby village, that has a staff with plenty of experience and knowledge of additional needs, a layout and set-up suitable for a child who has little independent mobility and no awareness of when he’s about to be trampled on by bouncing, bounding children, and an ethos that promotes thoughtful, creative, floor-based learning. Orange, as good a judge of character as he is, was instantly happy in the manager’s company and I felt confident, on very first meeting her, that she and her team could provide a safe and happy environment for him, where he would thrive. And not be trampled on by rampaging toddlers.

I wanted to book him in immediately. Throw him right in there, into the mix of little tots he was craning his head to see and shouting ‘eeeeeyyyooo’ to excitedly as we looked around. I would happily have handed him over then and there.

But there were hurdles to be scaled. Rather large ones, that we are still overcoming.

Orange needs constant 1-2-1 care at nursery to be safe and to be able to join in with activities. He needs physical help to move around, play and eat. And of course there’s the huge Orange elephant in the room in that he has a history of seizures that cause him to stop breathing.

Catering for Orange’s needs just isn’t covered under the standard terms of what a typical childcare setting offers. I’m sure that in there somewhere there’s a discrimination case waiting to be mounted, but the law as it stands just doesn’t protect or enable disabled children and their families and so childcare settings are not obliged to provide for children who don’t fit the norm.

Paying for a 1-2-1- carer full-time, on top of nursery fees, is simply beyond the means of 99% of families and so funding has to be sought. Our team at the Local Authority have been supportive with making this happen for us but, even so, have only been able to secure six hours of funding. During term-times only.

Six hours. Thirty-nine weeks a year. And that’s it.

While I am over the moon that Orange will be starting at nursery soon, there’s a crucial missing link here in that childcare is not solely for the benefit of the child but also to allow the parents to work. To keep a roof over their heads and contribute economically. And six hours a week simply isn’t enough. Six hours a day is barely enough.

We have had to, and will continue to have to, rely on help from family to fill the gap that childcare should be filling. I am only able to work when we have family help to enable this and I am incredibly lucky that my line of work means I can work so flexibly. Albeit, it is a gargantuan juggling act. And it puts enormous pressure on our wider family unit because we have to be completely self-sufficient, knowing that adequate outside help simply isn’t available.

And what I absolutely cannot understand, is how we got to this place where over 600,000 parents of disabled children say they have been unable to return to work (84% of mothers of the 800,000 disabled children in the UK have not returned to work). The system simply doesn’t cater for them.

Of course, you may argue that our circumstances are unusual. So far aside from the norm that we couldn’t possibly expect mainstream childcare to cater for our needs. That it’s just bad luck and we should suck it up. But that would be a backward way of looking at it. You see it is not us, or indeed our children, that marks us out as ‘other’. After all, we are consultants, teachers, buyers, artists, accountants, office managers, hair stylists, corporate fund raisers, army officers, tax payers, contributors to society. We have financial commitments that must be met (and some…) just like other families. We have hopes, dreams and desires, just like other families. We have careers hard fought for, just like other families.

But what ultimately stands us apart, and allows us all to often to fall into a black hole of isolation and financial vissitude is that we are denied the opportunity to return to our jobs and careers, because the support systems that enable parents to work are strikingly absent for children whose needs are more complicated.

The conversation about enabling parents of disabled children to work began not so long ago here¬†and I wrote what I’ll admit was¬†quite an angry blog post about the issue back in March when we were mid-flow trying to secure a nursery place for Orange. And so I welcome with open arms this Parliamentary Inquiry into childcare for children with disabilities. It is so desperately long overdue.

And to other parents who have faced similar issues in finding childcare for their disabled child, I would say this. Get involved. This is our chance to step into the spotlight and let our needs and views be known. Whether you have lost your career because childcare didn’t work for your child, lost your home because the finances didn’t add up with just one parent working, or are hanging on to the bare bones of a job by your back teeth but would like to be able to work more without relying on relatives to help, share your views.

The inquiry is seeking evidence from families, professionals and ‘a range of stakeholders’ (whatever that means) during May and June:

  • Written evidence can be sent for inclusion in the enquiry to until Monday 9 June 2014. This is a chance to share your experiences with a willing and influential audience. To ensure families with disabled children don’t continue to fall down the gaps left by an inadequate childcare system.
  • Families can also respond to this survey, which is gathering evidence to submit to the enquiry.
  • The inquiry is holding four oral evidence sessions during June. These will be chaired by Robert Buckland MP and Pat Glass MP. Write to them. Share your story. You might also want to consider writing to your local MP with reference to the inquiry. Belt and braces, so to speak.
We have a limited window in which to act and share our experiences to ensure that future childcare policy takes the needs of our children into account. We are under the spotlight. For perhaps the first time ever. There is a glimmer of hope but it needs us to facilitate real change.


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.


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 ūüėČ