Monday, 27 October 2014

Have you seen this Bert? #findbert

This is a post I never wanted to write. It's an appeal for help.

Remember Bert from Sesame Street? Yellow headed, monobrowed half of Sesame Street's favourite comedy duo?

For a long time now, Orange has lived life alongside Bert. Bert is Orange's best friend. His comfort toy. His sleep companion. In the absence of language, Orange has used Bert as a means of understanding life and communicating with the people around him.

Bert settles him to sleep, comforts him when he wakes in the night, watches him eat, acts as a trusty companion at nursery and hospital appointments, and is his constant in what can be, for Orange, a very confusing world.


On Sunday afternoon, Bert went missing in Selfridges, Oxford Street. A parent's nightmare, losing a toddler's favourite toy in a busy department store. Gone in a flash. In the seconds between checking his little yellow head was still there, alongside Orange in the buggy, he was gone. Dropped, picked up by another little pair of hands, kicked aside by passing people traffic, taken out of his hands, we don't know...

I will refrain from actually naming the parent on whose watch Bert disappeared, but you can take it from this that it wasn't me. The fact it was in the technology suite on the lower ground floor should clear up any final doubts... ;)

An hour of searching and hounding the store's staff (and some wifely hissing and shouting, just in case you still weren't sure which parent was to blame...), with still no sign, we cut our losses and left. Without Bert.

Later that day, we embarked on a solemn trip home to Cornwall leaving Bert somewhere, on the loose, in London.

A transatlantic hunt for a replacement began. We will, perhaps, end up with an army of Berts as a result. But none of them will be the original, best-loved, slightly chewed and most definitely dog-eared Bert.


In an attempt to squash my own melodrama about the whole incident, I'm trying to un-learn what I know about the scientific evidence for children preferring their own cherished comfort items over identical replacements.

It's kind of ridiculous I know... I mean it's not a missing person, or a family pet, but we have no way of explaining to Orange what has happened. He is upstairs in his bed shouting for him right now, unable to sleep.

I'm hoping on a wing and a prayer that social media can help us reunite Orange with his best pal Bert. Were you in Selfridges on Oxford Street on Sunday afternoon? Did you see this Bert? #findbert



Monday, 1 September 2014

The power of parental instinct

We all doubt ourselves as parents sometimes, don't we?

When a multitude of questions remain over your child's health and a veritable army of institutionally appointed 'experts' are involved in their care it's even easier to let one's self-confidence falter. We know our own children best and yet the weight of expert voices that surrounds us when a child has complex additional needs can begin to drown out that all important human element that is parental instinct.

Of course, it goes without saying that we are hugely grateful for all the support, guidance and advice we receive for Orange. We have (I think) a truly excellent team around us. But there are times when it feels like our own voices, opinions and instinct are drowned out by the authorities that now encircle our lives.

Teams of physiotherapists, occupational therapists, speech and language therapists, audiologists, visual support teachers and educational psychologists tell us what our child is capable of and what will aid his development and we are expected to follow their lead, mostly without question. Teams of neurologists, geneticists, cardiologists and paediatricians give us educated guesses on what might be causing our child's difficulties and the aspects of his health we should be concerned about and not concerned about.

Teams of social workers and early support workers evaluate how we are coping with everything having an undiagnosed child throws at us. Teams of occupational therapists, grant officers and surveyors even examine how we manage with daily life with an immobile child in our own home and make open judgements on which door we should use to get in and out, how we should bath our child and move him around from room to room.

We trust and respect our team. We listen to them and value their input. But there are times when it feels invasive. There are times I want to question. Times when I want to wrap up my small boy and take him away from all the institutionally imparted advice, the paperwork, reports and evaluations of our lives. There are times when my instinct as a parent tells me the right thing, actually, at that moment, is to close the doors to the world and cut our own path for a while.

Because how do we know that what we are told is right? How do we really know? There is a huge leap of faith that has to go into following the professional advice we are given. Often it is given on the basis of seeing our child for less than half an hour, sometimes on shaky scientific evidence and little true knowledge in the face of a child whose diagnosis remains elusive. How do we know that this one professional sitting in front of us is right?

There have been times when I have known that what we are being told or advised is incorrect and not in the best interests of our child...

The cocksure paediatrician who confidently declared she had 'never failed to find a vein' for taking blood who then failed, sending Orange into massive sensory overload that triggered a seizure, caused him to stop breathing and precipitated crash teams running from all corners to resuscitate him as he lay on my chest, blue and still. I wish to this day I hadn't let her try.

The nurse who missed his post-op medication and barked at me that 'it wasn't on her schedule and we'd have to wait for the next round' when I requested his overdue painkillers, mere hours after he had been through invasive surgery. It took shouting and tears (me and Orange) to get his meds given before he was overwhelmed with pain.

And less catastrophic... the wheelchair services occupational therapist who thought it would be fine to order a wheelchair for Orange in which he could launch out sideways and head bang against a metal handle to his heart's content. Or perhaps the trillionth time it's been suggested that 'messy play' is the answer to all our feeding woes and the incredulous looks I have received repeatedly when I explain again that yes, my boy is very happy indeed to rub sweet potato and mackerel all over his own head, with glee. Delighted he is. But put it in his mouth, oh no, not so much...

Over the years I am learning to evaluate. To listen, to learn, and also to question. More than that I am learning once again to tune in to the parental instincts that I have at times cast into doubt in the face of more conventionally knowledgable voices. It's easy to forget that we know our own child best.

Human beings are not infallible. Sometimes, professionals are wrong and in my experience it is often my instinct that will tell me as much. It is often my instinct that tells me what is right for Orange, what will support his learning and development best and what will ensure he has a happy, fulfilling life with as much 'normality' in it as we can muster.

During our summer holiday, I read a very interesting book lent to us by a friend of my mum's. A book by a lady called Dorothy Butler, about her grand-daughter Cushla who, like Orange, had complex disabilities of unknown cause. Medical professionals and therapists provided little by way of useful practical advice for the family and faced with a child who cried and cried in distress day and night the parents followed their instinct and did what they knew best. They read to her. Read and read and read to her. And it unlocked something in that little girl that led to her developing more skills than anyone could ever have predicted.

The story of 'Cushla and her Books' is both an academic study of the power of language and a hugely inspiring tale of a young family that treated their complex child with love and instinct, with the most unbelievable results. Their child, once disconnected from the world by her disabilities, lost, lonely and unreachable, blossomed.

My instinct has told me that Orange needs to be surrounded by music and nature. Music speaks to him in a way that words alone often do not. When he was smaller, the only way we could get him to eat was to sing to him. As a three year old, he comes alive at the sound of his favourite tunes, dancing and singing and engaging with people around him. In nature, Orange is calm, happy, thoughtful and playful. He explores his world openly. It was on the beach in St Ives that he first showed us his little personality and that he was capable of play, and learning.

Nature and music are vital for Orange. And yet interestingly not once has any of his NHS/local authority appointed professional team (as good as they are) suggested that either is of significant benefit. Reading Cushla's story has reminded me that we ignore our parental instinct at our peril and that listening to it can only be a good thing.

As the new academic year begins (still feels like a good time for a fresh start, even aged 35), I've promised myself that I will listen to my own instinct with just as much intensity as I listen to our professional team. I will find the courage to question, to push for what I feel is right, to say no to medical procedures I know are not in Orange's interest (and hope I am not arrested for doing so...) and to follow my heart in knowing how to captivate and engage my little boy in his world.














Monday, 23 June 2014

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 ;)

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 PremmeditationsRosy & BoMama 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



Wednesday, 7 May 2014

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 childcarefordisabledchildren@edcm.org.uk 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.





Thursday, 24 April 2014

Undiagnosed is...

“But how can he have no diagnosis, how is it possible not to have a diagnosis?”

When Orange’s mystery condition was first becoming apparent, I simply didn’t entertain the thought that we might never receive a diagnosis. While we waited the interminable weeks and months between (many) tests and their eventual (non) results, I mounted a personal search mission to seek out information on every potential syndrome, disorder and brain-related condition I could, in a hope of finding a match for his symptoms. As soon as little heads had hit pillows at the end of the day and the house was quiet, I would affix myself to the sofa, wine in hand, and delve alone, pulse rocketing, into the depths of every medical report and journal I could lay my hands on via Google.

I can’t count the number of times I sat in front of a blank search box, panic stricken, filling it hopelessly with various strings of symptoms, longing for an answer, thinking that if only I could just get the combination of words right, Google would magic an answer, even if it was one I wasn’t ready to hear:

“torticollis + hypospadias + hypotonia”
“low muscle tone + delayed development” 
“poor head control + development + mobility”

There had to be an answer. There just had to. 

But the more I Googled, the further I sank into a vacuum of seemingly endless syndromes, neurological disorders and brain-related conditions, any one of which matched Orange’s symptoms. I soon realised my naivety. I learned how little we actually know about the human brain and body. Not only are there thousands upon thousands of known genetic, metabolic and neurological conditions that just might be the cause of Orange’s difficulties, there are also thousands, possibly millions, more that we have no idea about, that there is no name for, no prognosis, no sure-fire therapy or treatment path. 

Science is a wonderful thing but, as I quickly discovered, it simply hasn’t caught up yet. Humans are continually presenting science with mysteries it has not yet been able to solve. My own research, and the hollow, hushed medical voices and grave, guarded consultant’s faces we were meeting, had told me there was definitely a ‘something’ but the nature of that ‘something’ was anyone’s guess. 

For a while there, right back at the beginning, the void left gaping by this undisclosed mystery was, I’ll be completely straight up, more than I could sanely endure. I clung on to calendar dates in the diary when test results were due, existing in between times under a heavy cloud of denial and hope. I survived borne up largely by a toxic amalgam of cheap chocolate, bad TV and wine. I shut the world clean out and ruminated, alone in a tired and frightened head, agonising over how I might bear it if another day ticked past without knowing what the future held for our boy.

Three years, several house moves and a complete change of lifestyle on, and my perspective over Orange’s ‘undiagnosed-ness’ has changed completely. While new and terrifying medical symptoms have reared their ugly heads during this time and veered me straight over the top of my own personal fear scale and back again, we have learnt as a family to live with the unknown and face the challenges head on. Not just to survive, to exist, allowing the days to pass. To really live. 

To us, ‘Undiagnosed’ has come to stand for many things that we are learning along the way:

 -Unknown is OK. For a planner, someone who likes to schedule life to within an inch of itself and maintain full control at all times, this was a toughie. Not knowing what Orange’s life expectancy might be, whether he will learn to walk or talk, whether any future children of ours or Beep’s might be affected, took a while to be comfortable with. These unknowns are all so huge, that if we pondered them too much or too often, they would simply swallow us up. Whole. Instead our focus has shifted to the here and now. We have no choice but to live entirely in the moment, with only a half-eye scanning the horizon from time to time. And I’ve discovered this is a far happier way to live.

- Unknown = Unlimited. No-one can tell us what the future holds for Orange. Some have cautiously guarded us against being too optimistic and our lives are now filled with machinery designed to help us with the practical aspects of having a child with very limited mobility. (I won’t pretend I didn’t feel angry at the world for a while when the lift shafts were being dug out of our beautiful seaside garden, or feel more than a little sadness that Orange’s ‘big boy bed’ is more cage than racing car, but with the right practical equipment in place we are free to enjoy our boy.) The flip side of the unknown is that no-one can place limits on his potential and he continues to surprise us. The boy who ‘might not ever be able to do anything’ keeps showing us that he can, he wants to, and he will.

- Understanding comes from unexpected places. When life trips along easily and without upset, it’s easy to skim over the relationships in your life without paying much heed to their depth or authenticity, or really connecting emotionally with those around you. But when you are plunged head first into adversity, superficialities melt clean away and you learn a great deal about people and their individual outlook on life. It’s illuminating and enriching.

Having Orange has taught me that even though your neighbour, boss, old school friend or postman may not be facing the same personal anguish as you, everybody is dealing with their own fly in the ointment, their own deep water to wade through. Perhaps the greatest and most immediate understanding I have encountered so far, of the emotional challenge that ‘undiagnosis’ presents, came from an old work colleague of mine who I hadn’t seen for years but was doing her utmost to live a bountiful, joyful and love-filled life against the backdrop of her own terminal cancer. 

- Undiagnosed is not unusual. In fact, it’s really quite common. There were we thinking we were unique, different, one of a kind, when it turns out there’s quite a crew of us all swimming around in the same strange pool. As fate would have it, the very year Orange was born, a group was reconvening and coming together to create something that unites families like ours to face the unknown as one. 

SWAN UK is the charity that supports families with children who have a ‘Syndrome Without a Name’. Through this charity I have met some of my now absolute favourite people. I have laughed with them, cried with them, celebrated feet taking their first steps aged 13 and mourned babies lives lost. We decipher genetics results together, make battle plans for dealing with errant education authorities or consultants that lack bedside manner. We enable each other to continue in our roles as advocates for our children and pick each other up when our energy and emotional strength is depleted. We ride a pretty intense roller coaster but what makes it ok is that we do it together. 

And so now, we celebrate our strength in numbers, and the wonderfulness of our SWAN children, with the second Undiagnosed Children’s Day, on Friday 25th April 2014. To celebrate, I leave you with this fabulously sweet and funny video that explains all about why Undiagnosed Children’s Day is important, because in the words of little Dominic (the cool dude in the Rolling Stones t-shirt who stars in the vid), ‘we don’t all get to be adults’…



Sunday, 9 March 2014

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?




Sunday, 2 March 2014

Three is a magic number

Three years ago today I was sitting at home, next to an over-enthusiastically and, as it went, prematurely and redundantly inflated birth pool, wondering why, in the name of sanity I was still pregnant. Anyone who has ever gone 'overdue' will know and understand well the boredom, angst and at times, downright desperation I was feeling as twelve days (and five sweeps) came and went since my due date.

Another five very long, waddling, days later, having admitted defeat on our hopes of ever having a lovely home waterbirth, advised to turn our backs on nature in favour of the dreaded 'medical intervention' and into a frantically busy London labour ward we went. The next day, on a beautiful sunny Spring afternoon, an Orange was coaxed into the world via an unwelcome mix of prostin gel, an alarming looking knitting needle contraption, a lot of uncalled for rummaging and uncomfortable monitoring and a vacuum cap.

Oh and I can't forget the visit from an apparently high profile female politician when I was mid-hypobirthing breathing in the garden suite, overlooking the Thames. A photo opportunity you say? Erm, no thanks...

An apparently healthy, shouty little Orange was born and I was instantly itching to get out of there. No breathing difficulties, no jaundice, no terrifying APGAR scores or SCBU monitoring, no IV antibiotics, blood tests or phototherapy lamps. No painful shuffle, pushing a tiny yellow person in a plastic tub to sit in a corridor and wait for the latest bilirubin results. No plastic toast and curt ward staff. No week-long incarceration with wailing, snoring, post-natal room mates with fingers missing who had just arrived on a plane from somewhere terrible to give birth in the UK (I kid you not).

The next morning we were home. After our experience with Beep, which brought with it all of the above horrors and more, it felt like we had dodged a bullet. But as the last few years have shown us, Orange turned out to be a little more complicated than that.

In some ways, the gentle unfolding of Orange's 'swan'-ness has been a kind and easy way to adjust to a more unusual way of life. Unlike many swans, there was no premature delivery, no early surgery, no long months in the NICU, no bomb-drops from paediatricians about syndrome like features. Just an unhurried dawning of small but significant realisations.

Before Orange, I was pretty ignorant and afraid of disability. If I had known, from the start, the difficulties he would be facing, I expect fear and despair may have entirely swallowed me up. As it was, we had some blissful early weeks to bond, attach, and settle in to being a family of four before the shadow of doubts and worries drew in.

And now, almost three years on, our lives are entirely different to how we left them, that Spring morning in London town. My Bugaboo Cappuccino perfect world slowly shattered, replaced piece by piece by something far less magazine glossy, more unapologetically extraordinary. My rough draft for the future has been torn up and cast aside but now sitting in its place is something far more grounded, spirited and at times terrifying, but fulfilling. Tougher, yes. But whole.

Next weekend, Orange will be three. As we draw closer to this milestone, the boy inches towards the threshold of being considered by society as officially 'disabled'. At three, mobility allowance becomes a given, as does his Blue Badge, a public label of disability. Being unable to walk, at aged three, marks him out no longer as a slightly large baby in a buggy, but as a child who needs a wheelchair to get around.

Turning three, for any child, is often a pivotal moment when the word 'baby' vanishes from family vocabulary. This is no different for Orange, and us. Although the hallmarks of babyhood remain very much a part of our lives they are moving into a different realm, that of disability rather than infancy. Nappies, wheels, a bed with bars, spoonfeeding at mealtimes...We still hope that Orange will move on from these things but if he doesn't? Well. That's ok too. I know now that we will manage and still be the people we always were, just with a different perspective.

Orange may not yet be capable of the independences of a typical three year old but I hope, this year, to be able to give him some of the freedoms enjoyed by his toddling peers.

A pre-school place.
Friends.
Liberty to learn, progress and be an increasingly autonomous person in his community.
And, perhaps even a birthday party invitation or two...

With Orange, and all his many mysteries, each birthday is loaded with more than its fair share of celebratory excitement, but also weighted with the consciousness that time continues to roll forwards with little consideration for him, trying his hardest to catch it but slipping slowly further behind.

But we cannot sift experience and take only the part that does not hurt us. We are learning patience, and witnessing miracles, almost every day with Orange. And as we crash through the floodgate that is Orange turning three, I know that this unplanned adventure, this unimagined life, will not be the shiny, polished, picture-perfect portrait of performance I once aspired to, but will be sunshiney and happy all the same, with many a magic moment.