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.




Sunday, 26 January 2014

Swans and angels

It is with enormous sadness we learnt today that one of the little children in our SWAN UK group has passed away. She was only one. A sweet baby girl for whom the angels have come too soon. We have been thinking of the family all day and at 7pm tonight, many of us lit candles in memory of her life. The SWAN UK facebook group is alight with beautiful candles, shining bright, alongside messages of support for the family. It is times like today when I feel hugely proud to be part of such a wonderful group of people. Gentle, compassionate and thoughtful, all the while living with their own difficulties, grief and fears.


This is not the first time in our group that we have lost a little one and it is with a sorrowful heart that I know this will not be the last. I also know that one of the many things that bonds us is that all too many of us have played through in our heads and hearts the loss of our own child. It is a fear that lies in wait, often swept from the front of mind by the necessities of maintaining continuity of daily life, but hiding in a corner of the soul, a disquieting constant.

With an undiagnosed child, the future is unchartered territory. A continual pendulum swing between fear and hope that can curve in any direction in the blink of an eye.

A lot of the time, our lives continue in much the way they ever did, albeit with a lot more work and some logistical challenges thrown in to the mix.

Sometimes, our lives are filled with greater fulfilment and happiness than ever imagined possible. The small things take on a previously unfathomable magnitude.

We keep our heads up and our hearts strong.

Sometimes, though, our lives bring great sadness. Tonight a family is grieving. And a bigger family grieves with them. Linked not by flesh and blood but standing together, bonded by an unplanned voyage into the unknown, holding a little girl and her loved ones in our hearts.




Tuesday, 31 December 2013

Of storms, ships, hopes and milestones

2013 has been the first year in a line of many that I can remember that hasn't centred around either a new house or a new baby, or planning for one or both of the above. After a constant flow of change and upheaval, this time last year we were looking forward to beginning our first full year in our new lives, and hoping that after the turmoil of 2012, the coming year would bring with it tranquility and contentment. On New Year's Day 2013, I waded out of the sea carrying the hope and vigour only a refreshing winter sea swim on a crisp morning can bring.

Looking back at the months now passed I see I should have paid greater attention to what the sea was telling me that morning. Intuition should have told me the raging walls of water, relentless and unforgiving in their pace, were playing out a revealing metaphor for the year ahead. Not unsurmountable, but unremitting.

Today someone asked me to sum up our year in three words and I realised that I couldn't. After a moment, what became clear is that, actually, I didn't want to. Not because it has been bad, necessarily, there have been some very happy times, but because it has been relentless. Every time we have needed, or wanted, to lift a foot from the gas awhile, we've had to put it right back to the floor and push harder. Downtime has been squeezed into snatched moments, never fully able to relax, for the consciousness of work undone and tasks in waiting has never lifted.

This year, the enormity of life with an Orange in tow has pressed down on us unyieldingly, with too little time free to balance out the magnitude of the job in hand with frivolity and fun.

Really, we're still novices in this new life, feeling our way around in the dark. There is no guidebook for this trip. No-one can tell us what the future holds for Orange, and yet there are challenges presenting themselves in the here and now that we've had to find ways to negotiate.

Basic things, like getting him in and out of the house safely now he's a fully grown boy who can't walk, getting him a pre-school (and eventually school) education when he can't talk, feed himself or use the loo, keeping him safe in bed when he's grown too big for a cot but has no sense of danger or ability to haul himself back up under the duvet if he falls out, keeping his joints from failing when he cannot weight bear, keeping him entertained and stimulated when he cannot access or interpret the world in the way a typical two year old can.

Getting all these things right for him requires hours, weeks, months, spent researching, reading, visiting, asking questions, filling in form after form, chasing, calling, emailing, and negotiating bureaucracy. Of course, I am eternally grateful that we live in a country where support and help is available but just figuring out what you need and jumping the hurdles to get to it is, or has been in 2013, a full-time job.

And at the end of 2013, I realise that this full-time job, along with my actual full-time job, plus the other full-time job of managing Orange's therapies, oh yes and the other one I stumble along in trying to maintain a home, raise children and be a wife, friend, family member and active part of the community, has pushed me right up to my limit. Beyond it, probably.

With financial worries, a punishing work schedule for both of us and a turbulent year of ill-health and shifting relationship landscapes in our extended families, 2013 has been a pretty eventful non-event of a year. Stormy. Not in a dramatic thunder and lightning sort of a way, but a persistent gale, with the odd hurricane force gust thrown in for good measure.

But there have been glimmers of sunshine through the storm...

Friendships renewed. And that I am so thankful for.

Long, lazy, hazy days spent sun-soaking on the sandy shoreline.

The unbelievable and overwhelming kindness of strangers.

A blossoming sibling relationship with ferocious loyalty and the tenderest of love.

Orange has done things we thought he might never do. He sits up. He inch-worms across the floor. He laughs at the same scene in Peppa Pig each time when Daddy Pig sets the BBQ on fire and Miss Rabbit comes to the rescue. He holds his arms up for a cuddle and shouts with the disagreeability only a hungry toddler can. He giggles with excitement when he realises he's on the road to swimming class and raises merry hell when Katy Perry comes on the car radio. He surprises us daily.

Orange, with all his Big Scary Unknowns and constant surprises continues to shape our lives, focus our hopes and influence our priorities for the years ahead. With less than three hours left in this weary year, 2014 stretches out in front of us fresh, clean, unsullied and full of opportunity. I dare not anticipate exactly what the new year will bring but I am hopeful. Gradually, piece by piece, our lives are starting to form into something a little less chaotic. I can see restored order beckoning on the horizon.

Tomorrow, I'm hoping for calmer seas. But what Orange, and this year closing behind us, have taught me is not to be afraid of the storm, just to learn how to steer the ship, and to be eternally grateful for small suns on grey days.

A couple of weeks back, I came across this riddle, inscribed on the wall at Eden. Simple words, hidden in the undergrowth. It was one of those little moments that 2013 taught me to cherish, when coming across something small but wonderful. This seems like a good time to share it.

Wishing you all health, hope and happiness for 2014 xx



"We will open the book. It's pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year's Day." 

Edith Lovejoy Pierce

Saturday, 30 November 2013

The night before Advent

You could say that, in this house, we're rather big fans of Christmas. In years gone by I would never have been one for even thinking about mulled wine and mince pies until December was well into its second half. All that changed with marrying a man with a great propensity for silliness and a childlike love of all things merry, and becoming mother to a girl who thinks July is a perfectly appropriate time to don a Santa hat and belt out Jingle Bells at high volume.

As soon as Mr Mavis's birthday in mid-November has passed (35 now, ha ha), it's time, in our house, to start getting festive. While this year, sheer volumes of work and other commitments have stalled the merry making so far to just a Pinterest board of present ideas, a school Xmas fair and a few jars of Christmas spiced apple chutney maturing in the larder cupboard, that unmistakable Christmassy feeling is beginning to surface. When The Fairy Tale of New York or Last Christmas pops up on iTunes shuffle, I'm no longer irritably trying to switch to something less festive. Embracing the jingle.

Our village does Christmas very well indeed. Parties-a-plenty, lantern parades, carols and barrel-loads of mulled wine and, if we're lucky with the weather, a crisp beach walk or two. It's a wonderful place to be at this time of year. Christmas here is about having fun with friends and family. Lots and lots of fun. Lots and lots of wine.

The Beep is already supercharged with Christmas spirit. In her world, Father Christmas has been living in the lighthouse since at least the first week of October, watching over the coast from his offshore turret to ensure every child in the village is being very good (even if that doesn't always include her...). She's practising her songs and her 'line' for the Nativity play on an hourly basis and, today, wouldn't leave the house without reindeer antlers, a red nose and a bell. It would be fair to say that where the festive fizz is concerned, the girl is certainly feeling it.

The magic of Christmas is not lost on The Beep. She positively lives for it. And now Orange is nearly three I've found myself wondering how can we help him feel the magic too?

I remember with almost time warp like clarity my younger brother, himself just three, freshly laundered Christmas shirt and chinos on, smart side parting in play (sorry bro), stepping into the living room wide eyed and sparkly on Christmas morning and declaring triumphantly 'It's CHRISTMAS!' The delight and wonder in his tiny voice was a perfect moment.

More than anything I want Orange to feel that wonder. To experience the anticipation of counting down the days until Christmas, and the excitement of leaving a mince pie and a glass of whisky out on Christmas Eve. To go to bed dreaming of Father Christmas fleeting through the night sky with sacks full of gifts and cheery, snow-dappled reindeer. At nearly three, children of Orange's age would typically be jumping into the Christmas spirit with both feet.

But Orange can't jump and neither do we know what he understands, if anything at all, about Christmas.

It would be easy to let Christmas become synonymous with everything that Orange can't do or say. It's such a marker of time, after all. A point to which every year returns. Comparisons are drawn, tales of Christmases gone by are told and plans for the future made. I have often found myself thinking 'maybe by next Christmas Orange will be able to feed himself his Christmas dinner...maybe by next year he'll be able to open a present, or sing along to Jingle Bells with his sister, even if it's in July...maybe by next year he'll understand what Christmas is all about.' Or, maybe, he won't.

This will be Orange's third Christmas and for the first time, instead of clinging on to maybe's and what if's, I'm letting go a little of hoping for normality. After all, I could be waiting a long time, perhaps forever, for Orange to understand Christmas. And it would be too unbearable to think of him not experiencing a magical Christmas because we've failed to adapt to his way of being.

In many ways, I realised that really all that's required is for us to think about Christmas in a different way and to appreciate that Orange can enjoy the magic of Christmas in his own way. A few carefully planned activities is all it takes to make sure he feels included, and can take as full a part in the Christmas experience as the rest of us.

While Orange may not understand who Father Christmas is, he'll sure as hell enjoy story time with the elves in the Yurt at Eden and have a good old grab at a white beard or two. He'll watch wide-eyed as the lantern procession weaves up the coast road through the darkness and listen with wonder to Carols from Kings (forever known as Carols and Kings in this house, thanks to the Beep). No doubt the boy will wolf down his goose and roast veg on Christmas Day, (even if mashed to a microscopic degree) and chuckle along to a Christmas film or two while Mr Mavis nurses a Boxing Day 'beerache' (another Beepism).

He may not understand Christmas, or be able to get excited about it, but I know now that he will feel the magic in his own way.

So instead of feeling sad, and a little guilty, that only Beep could partake in the daily December delight of picking open little cardboard doors with a fingernail and tearing away silver foil for a pre-breakfast chocolatey treat, we've decided to do Advent a little differently too.

Last year, one of my fellow swan mums came up with a fabulous idea to do a sensory advent calendar for her little boy. Like Orange, Freddie can't chew so chocolate is off the agenda, and Advent seemed like the ideal opportunity to indulge in a little sensory play. Children with difficulties like Orange struggle to make sense of their world. Taste, touch, sight, sound, smell, can all be hugely overwhelming, or thuddingly underwhelming, so exposure to a variety of sensory experiences is vital therapy. Of course Christmas, sparkly, music-filled, cinnamon-scented Christmas, is almost the perfect sensory playground.

So today, The Beep and I have raided discount-stores for tinselly, glittery tat, kneaded gingerbread play-dough, filled bags of rice with vanilla and peppermint, stuck clove faces on oranges, covered boxes in Christmas paper and selected stories and Christmassy instruments (jingle bells, of course) to go in a Sensory Advent Box for Orange.

Each morning until Christmas, she'll help me to pick an item for Orange to squidge, shake, listen to, smell, touch and (if we're lucky), taste. And you know it was fun. Heaps of fun. I can't wait to see Orange's sparkly little eyes light up each morning as Beep hops up and down helping him partake in his Advent activities.

Beats the hell out of a Cadbury calendar, don't you think?


Saturday, 16 November 2013

The speech of Ummms.

Introductions can be awkward at the best of times. Unless you're in the hands of a skilled social butterfly who seamlessly brings people together with charm and ease, there's always that little silent moment following an introduction where you wonder who might speak first after the flurry of 'lovely to meet you's' and 'how do you know so and so's'. Will you launch into laid-back conversation with your new acquaintance or will you both be scanning round the room in ten seconds flat looking for a rescue buddy, a passing canape tray or willing your phone to ring so you can make a polite exit?

As a natural-born introvert who somehow ended up in the world of PR (I know, don't ask...), oft surrounded by the gregarious and generous of voice and wit, I had to leap the pain barrier and force myself to get really good at filling that awkward little post-introduction moment. Knowing what to say and how to put people at ease in conversation is just all part of the day job, even if deep down I'd far rather be absorbed behind the covers of a good book, than making small talk with strangers. Over the years, it became easy. Second nature.

So it has come as something of a surprise that introducing Orange to new people is causing me a major conundrum. For a good long while he was still small enough that he was just like any other little baby in a pram, tucked up inside and usually asleep, it was hard to tell there was much different about him so there was no need to make any grand declarations other than 'this is Orange'. But now?

Now, Orange is two and a half. He's two and a half but he can't toddle about leaving a trail of destruction in his wake. He's two and a half but he can't interrupt a conversation with a pointed 'mummy, mummy, MUMMY!'. He's two and a half but give him a Brio train set and he'll bring each little wooden train right up to his face and examine it in great detail but he won't know to push it along the track. He's two and a half but he has no idea what to do with a bread stick or a chocolate button, nor could he chew them.

Orange is discernibly different. Not just in his delayed development but in himself. His quirky little 'knocking at the door' and 'milking a cow' hand movements, over-enthusiastic vocalisations, bendy, floppy little body and wacky little eyeballs mark him out instantly as a child definitively set on an atypical path in life.

When we meet new people who have no previous idea about Orange's differences, I am acutely aware of a need to fill that gap after the 'this is Orange'. Maybe I don't need to. I could, of course, leave people wondering. But stepping into their shoes I feel their questions rising and I want to counter them. I see their double-takes and I want to pre-empt any awkwardness they might feel by having to ask. I sense their concern and want to spare their feelings even if at the expense of my own.

If I don't provide a fitting suffix for introducing my son, I'm leaving open a huge elephant in the room that I don't want people to feel they have to ignore, pussy foot around, or avoid asking questions about. I want to talk about Orange and I want to talk about his difficulties, in as positive a light as I can. After all, if disability isn't talked about, it remains taboo. And once it has been talked about, the air is free to be filled with regular conversation, laughter, chat, and enjoyment of the personalities in the room, including Orange. Those who know him will tell you he is a really charming, cheeky and funny little chap and it is this I want you to see.

But knowing what to say to satisfy the immediate and natural curiosity peaked by Orange's idiosyncrasies is a puzzle I haven't solved yet. I've toyed around with a few things but none have yet seemed fitting and most end up in a pretty incoherent rambling speech of ummms:

'This is Orange, he's, ummm, he's two, but he's not, well ummm, what I mean is, he's two but he's developmentally delayed, because, well, ummmm, we don't really know why but he can't walk and, er, he's not talking yet, and he's really fine, yes, ummmm, he's fine but he also has epilepsy and he stops breathing and, ummm, sorry, you probably didn't want to know that, I didn't mean to scare you, yes, ummmm, this is Orange...'

It pretty much always goes something like that. I haven't yet found a graceful and easy way of introducing Orange. Certainly without saying 'ummm' a hell of a lot. I know I'm not the only parent of a child with additional needs to struggle with this. After all, we really just want people to get to know our child for who they are, their personalities, likes, dislikes, quirks and charms. Without a diagnosis it's even harder. I can't say 'Orange has autism' or 'Orange has cerebral palsy' to explain his differences.

I could brush over it and move on, but I want people to feel that it's ok to talk about differences and disabilities. It helps the world make sense of it. Understanding leads to acceptance. So to anyone I might meet one day with Orange in tow, I apologise in advance for the speech of ummms. I'm working on it :)