Monday, 25 May 2015

Don't lose your head

When our first babies reached a year old, my friends and I cheerily raised a drink or two to celebrate having kept alive our firstborns for an entire year. Giving birth to, feeding and growing a whole actual human seemed like such a momentous achievement and yet we were able to nonchalantly joke about keeping our offspring alive because we had never yet faced a situation where their lives were ever remotely at risk. We just had to, you know, feed them and love them and stuff.

Even with Orange, we've been extremely lucky that he was born healthy and in the first 18 months of his life, faced no immediately threatening health issues, despite his developmental complexities. Of course he threw us a major curveball in the autumn of 2012, when we were just days away from relocating to Cornwall, in that he developed a seizure disorder and gave us the fright of our lives by having six seizures in 24 hours that each caused him to stop breathing.

Our experiences of the NHS have shown us that there isn't much that can fluster a High Dependency Unit paediatric nurse, but there were several moments during that hospital stay when we were not the only people in the room that had our hearts in our mouths wondering if our boy would ever take another breath.

But he did.

Mr K wrote a guest post for the blog at the time that said everything I was too numb to articulate.

It was the greatest fear I have ever felt and I never wanted to step inside that house or that hospital again. Of course we didn't have to, for we soon left it all behind to start a new life that represented hope, serenity and a happier future. An escape.

Several days and one extremely nervous journey down the A303 later, we had left well behind us the memories of our boy, blue and lifeless on the kitchen table, the fluorescent hustle of paramedics, the sterility and freneticism of the resus unit, and the deep, deep fear of losing our boy to a type of epileptic seizure which not one specialist could accurately identify.

With a little trepidation, and a lot of hope, we settled into our new lives knowing that it was likely Orange would face these seizures again, but with every day, week and month that ticked by, we slipped further and further from a paralysing state of high alert to a more relaxed way of being.

We worried a little less about who we left Orange with. We allowed ourselves to be excited about him starting nursery. Even letting the telly babysit him while I went to the loo or made a cup of tea became a possibility again. We slept a little more, instead of lying with one ear attached to the baby monitor, tuned in to every rise and fall of his breathing.

With only a few absence seizures here and there, and one small seizure last summer with a slightly juddery but well oxygenated and still breathing boy, his epilepsy was well controlled. We felt confident we knew what we were doing, and I didn't hold my breath every time Mr K travelled for work, wondering if now would be the time Orange would throw us a big one.

But last week, he did.

With Mr K in Dallas, I was on bedtime duty for the fourth night in a row, and in major need of a gin and tonic. Orange, home early from nursery with a fever, was in bed. Just Beep to contend with. At last, she was settled. And then a little voice piped up.

"Mummy, Orange's breathing is giving me nightmares. He sounds like a monster."

I listened at the door.

"He's just snoring Beep, get back into bed and I'll go and tuck him in."

As I opened the door and unlatched his bed, the 'monster breathing' stopped. I raised the blanket to tuck him in. Pulling it over his little body I watched for the rise and fall of his chest before closing his bed and saying goodnight. Only that rise never came.

Lifting him from his bed, his stillness crushing me cold, I knew we were here now. This was it. It was a bad one. My head torn between fear for my boy's life and sadness for my little girl that here she was again, watching her brother clinging on to life.

"He died, but he's ok now..." Her three year old words echoed in my heart as I dialled 999 and held his airway open.

Desperately following the life support instructions of the emergency operator, I gave him rescue breaths, Beep watching his chest and his colour all the time.

"He's breathing in mummy. He's breathing in. But he's grey mummy, he's still grey. Orange, you're going to be ok, the ambulance is coming. He's breathing mummy, he's breathing."

Orange took tight, laboured breaths as the seizure constricted his chest. In, and out. In, but not out. A pause. In again, in again. And out. A pause too long. More rescue breaths.

As the ambulance arrived, my little six year old Beep took charge, running to open the door and directing the crew up to where we were. Bravely, she watched as Orange was intubated on the landing floor. Calmly, she cuddled a favourite toy and went without a tear or a fuss to sleep with our neighbours as I frantically grabbed medication, a hoodie, shorts and a phone charger and leapt into the ambulance with Orange, tubed and bagged and still in the grips of the longest seizure he had ever had.

His pyjamas cut, wires all over his body, oxygen mask over his little face, we raced through the dusky lanes to the whine of sirens and the flash of blue lights. Rescue medication given. But still no change in him. Holding on to the inside of the vehicle as we sped up and down through the windy Cornish countryside, I watched Orange, rigid and fighting for breath. And I lost hope. Gave in to fear.

Is this how it's going to happen? With Mr K abroad and Beep with no family to comfort her? It's been 30 minutes and he is still unconscious and struggling to breathe. We're going to lose him, right here on the A38 in the back of an ambulance, aren't we?

I wonder when to call Mr K. If we're losing him now I don't want to go through this alone. I text him.

"In an ambulance. Orange not breathing."

A second dose of diazepam. I watch the screen as his oxygen sats hover around 50.

A Texas number flashes up on my phone. But I don't know what to say. Get home? But how? Your son might not make it? But maybe he will? And then I've created fear where none belonged.

But then the sats were creeping up. Up and up, 60, 65, 72, 88. The heavy silence in the ambulance was broken by the paramedics.

"He's going to be alright, he's doing alright now, he's doing ok. He is, he really is. Go on, tell his dad he's going to be ok!"

As we arrived at resus, a now distressed and angry Orange was wrapped in a blanket and carried gently into the hospital. Wired up to monitors, and soon falling into a post seizure unconsciousness, Orange let his exhausted little body rest and I completely fell apart in the arms of my mum who was waiting there for us, not knowing if he would arrive alive or dead.

We watched and waited for Orange to regain consciousness. We watched and waited for any sign of another seizure, expecting it to happen as it had in resus three years before. And again, and again on the ward.

But he surprised us. History did not repeat itself.

In fact, by midnight, riding up to the High Dependency ward he sat up on his trolley and had a good giggle about the fact he was naked in the hospital in the middle of the night.

We were looked after wonderfully on the ward. After a moment of black humour shared with friends about the prospect of a night upright in a hospital chair, a kind nurse brought me an incredible recliner and a pillow. Mum brought me an enormous bag of snacks and a duvet, and some of the essential items I'd forgone for shorts and a winter hoodie in my panic. And the next day, kind and wonderful friends brought in breakfast, coffee, books, toys and much needed hugs.

Our wonderful village and lovely friends, and mum, supported us and held us up when we needed it most.

I thank you all so much everyone who looked out for us, looked after Beep, visited, messaged and called Mr K to make sure he was ok too. I hope we can return these kindnesses in the future.

So now we are home, the adrenaline has subsided, and I am trying not to lose my head. We can't run away from the fear this time. I can't leave 250 miles behind me the landing where I kept my son alive while waiting for an ambulance. And I know it probably won't be the last time I have to do so.

This time we have to face it.

Feel it.

Learn to live with it.

And not be paralysed with the fear of what may come. We must fill our heads and hearts with new dreams and new hopes instead.


Sunday, 26 April 2015

Weeks like this

I'm often asked what it feels like to have no diagnosis for Orange's condition. How do you stay so positive? Aren't you afraid? Doesn't it completely mess with your head not knowing?

The truth is, that carrying around such big unanswered questions would be utterly paralysing if we let them take centre stage in our lives for too long. There are no answers and we have to carry on living our lives in acceptance of that, while still trying to do the very best we can for Orange.

It's a fact that life does not stop to make way for finding answers, however much we might think we want or need them. So if we were to give in to fear, and let our heads run away with what being undiagnosed might mean, to stay in that dark place we dwelled in the early months of Orange's life when we would have done anything to get a diagnosis, it would be all consuming.

Life would pass on by without us truly taking part.

When the months of waiting for a diagnosis give in to years, you have to find a way to compartmentalise the uncertainty and step back into the swing of life.

So we put our biggest fears to one side and get on with living the best life we can live. Enjoying the company of people we love, following our dreams and ambitions, and giving our children as many opportunities as we can for a happy life.

I am so grateful to have moved on from the days when all I could think about was finding a diagnosis. Most days, my head is full of pretty common-or-garden things. What to do at the weekend, wondering why am I vacuuming cat hair for the thousandth time this week, keeping up with work and the typical demands of family life.

But there are some weeks when the world forces me to fully square up to the very worst of those tucked-away fears. This last week was one of those.

It has always been a possibility that Orange's difficulties are caused by a metabolic disorder of some kind. An 'inborn error of metabolism' that causes developmental delay and health difficulties. Many of these are regressive conditions, with short life expectancy. While his continued physical growth and capacity for learning would suggest such conditions are unlikely, none of them have yet been ruled out in the search for a diagnosis for Orange.

On Wednesday, we saw a metabolic consultant for the first time. Until now, I've been able to neatly parcel away my fears (and greatly detailed and probably unnecessary knowledge thanks to google) about metabolic disorders, but on Wednesday there they were, laid bare on the table before me.

The consultant was kind. Reassuring. Sweet with Orange as she examined every millimetre of his being. She took blood. A huge amount of blood from his (somewhat unwilling) little hand. Blood that was quickly and deftly portioned out into tens of little vials, to be whisked off to labs all over the UK and beyond. The consultant could not tell me the full list of conditions these tests will either rule out or identify because it is simply too long to digest. The tests will, over the next six months or so, look for small differences in Orange's blood and amino acids make up, that might or might not lead us towards a diagnosis.

In that moment I was reminded, that while the boy sat before me is a big, healthy, happy, cheeky, growing young lad, we still have absolutely no idea what the future holds. Or how long that future might be.

And I had carried with me into that moment the desperate sadness of another family whose little boy's future had been taken away. A letter home from school. Opened, hastily, in a snatched moment of downtime in the paediatric ward waiting room. One of Orange's little school friends. A dear little boy, who has passed away. In that letter, the full weight of sadness in the school community was palpable.

Without doubt, the very hardest, most difficult thing about having a child with disabilities is that, in the wonderful connections you make with other families facing the same, some of those children will not make it. It is something that I don't think any of us ever come to terms with. Every single time a child is lost, it is gut wrenching. We feel that family's sadness in the loss of their child to the core of our souls. We are also cruelly reminded of the vulnerability of our own.

Knowing that outliving your own child is a very real possibility.

But what of the alternative?

Sometimes I joke that I need to live forever. But there was never a truer word said in jest. For who will look after Orange when I am gone?

In bleak terms, we do not have the money to provide the full time live in carers Orange will need as an adult, nor do we have a big family, and the chance of filling that gap by providing multiple siblings for Orange to help care for him when we are dead has been taken away from us by his lack of diagnosis. We simply have no way of knowing whether we are unlikely to have another affected child, or very likely indeed. It is too big a risk to take on.

But this week I also carry with me a stark reminder that I cannot live forever and that life is unpredictable. One of my closest friends, about to start treatment for cancer, which we have every reason to believe is fully treatable, but has taken us in our minds to some frightening places.

And Undiagnosed Children's Day, as much as it is a positive celebration of our children and a hugely important awareness raiser, also brings with it the reminder that we are facing the unknown.

It has been one of Those Weeks. A week that once today is out I will put in a box in the back of my mind in search of calmer waters. The more ordinary the better.

For now, I am firmly ensconced on the sofa, playing spot the SWAN mum in the London Marathon (watching it always makes me feel ridiculously emotional, I have no idea why...), and feeling so, so thankful to have other SWAN families in our lives. For I know they all have weeks like this too. Without them, the darker times would be unfathomable, and the happy times distinctly less merry.

If you would like to sponsor Liz in her marathon madness, and help raise much needed funds to help keep SWAN UK going, you can do so here.

Thank you x






Friday, 24 April 2015

You know you have an undiagnosed child when...


They say there is strength in numbers don't they? And that's absolutely what we have found in SWAN  UK. Our children are all so different but the challenges we face in raising them and getting the support they need are often very similar.

As SWAN parents, we all recognise the ways in which our lives have changed. Often we get through the tough times with some pretty bizarre gallows humour (and gin), and can be observed bonding over things most of us never imagined would make an appearance in our lives. Bile bags, anyone?

If you're a SWAN parent, you might recognise some of these things. And if you're not, it might give you a small window into some of the little quirks of daily life for parents raising an undiagnosed child.

You know you have an undiagnosed child when...

  • You jump for joy when you see an M&S Food concession opening at your local hospital. No more soggy pasty slices!

  • Your child has their very own Personal Assistant. Perhaps two. And you need another one to manage all their paperwork.

  • People who you have never met call you 'mum'. In fact, you might as well do away with having a name all together, since most of your post is addressed 'to the parent/carer of'.

  • You can draw up exactly 2.5ml of Epilim, in the dark, while rubbing your tummy and patting your head simultaneously.

  • You keep a running supply of controlled, mind-altering drugs in your home medicine cabinet.

  • Your house has more lifts than the average shopping centre and more hoists than a construction site.

  • Your child's shoes cost more than yours do. 

  • No matter how hard you try to 'style it out', that enormo-seat disguised as a giant bee and the standing frame designed to look like a cartoon monkey are never going to quite fit in with your period-chic/Skandi cool interior design. Because insects and jungle creatures are just so much more tasteful, right? Right?

  • You can speak at least three languages that most people have never heard of. Makaton, BSL and PECS. Clever, huh?

  • Your Amazon Prime delivery of coffee beans is the happiest moment of the month. Without question.

But perhaps the absolute number one giveaway that you're a parent to an undiagnosed child is that it is only possible to make light of having to visit the hospital multiple times per month, or your home drowning in pieces of equipment (that have been given absolutely no aesthetic design input whatsoEVER), because you are not doing it alone.

Before we found SWAN UK we felt utterly alone. It was frightening, overwhelming, exhausting, and we really thought we were the only ones facing the difficulties we faced. 

But finding a likeminded group of funny, articulate and clever parents all with their own little undiagnosed dudes changed all of that. Many of them will be friends for life. Having Orange has expanded our lives to include all these wonderfully cool people that we would never have got to know otherwise. And for that, I'm very grateful.

Thank you, SWAN UK x







Wednesday, 22 April 2015

Undiagnosed Children's Day isn't just for us

Friday 24th April marks the third Undiagnosed Children's Day, a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support the charity SWAN UK (Syndromes Without A Name) that is a lifeline for families with undiagnosed children.

But I want to explain why this isn't just a day for us, and for families like ours. Really it's for everyone else.

For future parents, grandparents, midwives, GPs, brothers, sisters and friends. Because no-one expects their lives to get so complicated, but having an undiagnosed child is so much more common than you might think. And knowing what to do, and where to turn, if it happens to you or someone you know, can make all the difference.

Before we had Orange, we had no idea it was even possible to have disabilities or additional needs without there being a clear diagnosis. We also had no idea that the little boy we were expecting would have any difficulties. We inhabited a much simpler world where antenatal tests instil a sense of security about the health and development of your baby and if there was anything to worry about or prepare for we'd know, wouldn't we?

Orange was born in good health but it didn't take very many weeks for us to notice he was having some difficulties. And while our GP agreed at his 8 week post-birth check that there were some concerns, his muscle tone was low, his neck muscles weren't working properly, his development was lagging, he had minor hypospadias and his hearing was a concern, there was no explanation at this point about what this might mean.

With no support and no information, I spent every evening in the depths of the internet trying to match up my son's symptoms, and my instinctual sense that something serious was wrong, with what I found in academic reports and health journals. What I really wanted to be told at that time was that everything was fine, but of course it wasn't. The more I read the more I knew something was amiss, but if I could just find out what it was...

It was, without doubt, one of the darkest and most terrifying times of my life. More than anything, more than the prospect of raising a disabled child (which at the time felt insurmountable and which I was far from ready for, I mean, who is?), the single thing that made it so terrifying was the lack of information and support. We simply had no idea at all what we were facing, and no-one could tell us. It was a lonely, isolating and desperately sad time, when we should have been enjoying our beautiful new baby boy who was, and still is, an absolute darling little soul.

Soon enough we were into chromosomal testing to see if a genetic syndrome of some kind was causing Orange's difficulties. Tests that would bring us the answers we had so desperately been waiting for. At last we'd be able to move on with our lives, knowing what was ahead.

Sitting on the kitchen counter top of our holiday cottage in St Ives one sunny afternoon, we got the call. Expecting the worst, I couldn't quite believe what I was hearing when Orange's paediatric consultant called to say his tests were all clear and revealed no sign of chromosomal abnormality. Nothing.

I'm pretty sure I've never jumped for joy before but in that moment I did. In that small moment, I believed that, after everything, after all the worry and fear, we actually might have a completely healthy little boy. That all the fright and panic was unfounded. I'd been ridiculous. Over-anxious. And that actually he was going to be fine...

But of course he wasn't.

What no-one had explained to me - no doctor, no paediatric consultant, no health visitor, no physiotherapist, no cranial osteopath - was that Orange was likely to have difficulties anyway. With or without a diagnosis. That it was very possible, common in fact, for children with often quite severe disabilities to have no diagnosis at all. And that Orange could very well be one of these children.

The dawning realisation that even with no syndrome to identify the difficulties Orange was having, he still faced life with disabilities, was crushing. Struggling to reconcile the 'all clear' test results with my little baby boy of six months who spent much of his life asleep, rarely smiled and was no closer to being able to sit up than a newborn, I turned back to the internet to search for answers.

And that is when I found SWAN UK, the charity that supports families with undiagnosed children.

At that point, SWAN UK comprised a small group of families that all too quickly became like an extended family of our own. Suddenly, we were not alone. We could see what the future might look like for us and could share the highs and lows of life with an undiagnosed child.

No longer were we alone in facing an uncertain future with our child. We had a place to inform ourselves, to find emotional support and to connect with other families experiencing the same.

Since that time, SWAN UK has grown to support over 1,000 families with undiagnosed children. And is still growing...

Undiagnosed Children's Day is hugely important in reaching more and more families who are feeling lost and alone, just like we did, and to give them a place to feel listened to and supported.

But perhaps my greatest hope for Undiagnosed Children's Day, is that it raises awareness among GPs, health visitors, midwives and paediatricians so that families who walk in our shoes in the future don't have to walk alone for so long, or to ride the emotional roller coaster that we did, thinking for so long that with no diagnosis, there must be no difficulties, only to realise with time, that it doesn't mean that at all.

I also hope that, like Down's Syndrome and Cerebral Palsy, being undiagnosed quickly becomes a widely recognised condition, so that parents like us don't face the shock, alarm and disbelief that we did as we realised that clear test results didn't actually mean an 'all clear'.

But also, my hope for Undiagnosed Children's Day is to say to families starting out on the same path as us, and to those supporting them, that having a child with severe disabilities, with an entirely unknown future, while difficult, has brought many more happy times to our family than unhappy ones.

That while disability felt utterly terrifying, that as humans we are resourceful and capable. While we never expected our lives to get so complicated, we wouldn't change it for the world.


SWAN UK needs your help!

You can help support families with undiagnosed children by donating to SWAN UK.

Currently a large proportion of the money that supports SWAN UK comes from National Lottery grant funding that is due to end in April 2016. The charity must secure alternative funding to continue to provide their unique service to families of children with undiagnosed genetic conditions beyond this date.

The money raised through Undiagnosed Children's Day 2015 will go towards supporting SWAN UK in the future.

Donations to SWAN UK can be made via texting SWAN11 £[amount] to 70070 or online via their Virgin Money Giving page.

Thank you.


Friday, 13 February 2015

And this is why we do

It's been a busy week. A very busy week. Which is why it's taken me until Friday to sit down and write about some awesome news we received on Monday.

You might remember that last year I went to Westminster along with Stacie Lewis of Mama Lewis fame, Hannah Postgate from Rosy & Bo and Mr Boo's mum from Premmeditations to assist with the all-party Parliamentary Inquiry into childcare for disabled children. We gave evidence to testify for our experiences of trying, and failing, to find appropriate and adequate childcare for our children, who all have different disabilities and care needs.

We made suggestions for what some of the solutions might be to help enable parent carers (and particularly mothers) to be able to work. For many of us being able to work isn't simply a 'lifestyle choice' (as some of us have been told by the local authorities who are supposed to support us), but it is a financial imperative.

As it is for most families.

Our needs and desires to work are no different because we happen to have a child with disabilities. And yet finding childcare is, all too often, impossible because providers are often not set up to cater for individual needs or, if they can and are willing (i.e. gold dust!), the cost is prohibitive to all but the extremely wealthy.

It was a privilege to be able to take part in democracy in action and to converse openly with the MPs and peers involved in the Inquiry. My eyes were opened to a hugely productive part of our political system that we just don't see via the media lens which is so often focused on the negative.

The Inquiry led to the launch of a report of recommendations for resolving the issue of childcare for disabled children. But, well, what next?

How does this report translate into real change?

Through continued campaigning and pressure on decision makers.

Recently the 'Counting the Costs' campaign by Contact a Family was particularly hard hitting in its openness and recognition of the enormous additional costs associated with having a child with disabilities - and therefore the additional imperative on families with disabled children to be able to provide an income for themselves.

And the hard work is starting to pay off.

It's incredibly early days, and with a General Election just around the corner there is still a huge amount of work to do, but on Monday came a fantastic piece of news.

The Government has decided to introduce legislation to double the maximum amounts that parents of disabled children can pay in to their Tax-Free Childcare Schemes, in recognition of the higher childcare costs that parents of disabled children face, all too often making childcare massively more expensive than the salary it would enable a parent to earn.

Here's the lowdown from the Government consultation response:

“Representations were made during consultation that additional support should be provided for disabled children in view of the generally higher childcare costs their parents can face. Similar comments were also made during the Bill’s Commons Committee stage when the Exchequer Secretary to the Treasury made a commitment to consider this matter further.

Having considered this, the Government has decided to introduce legislation to increase the maximum amount that parents of disabled children can pay into their childcare accounts, in recognition of the higher childcare costs these families incur. For accounts for disabled children, the maximum payment for a standard three month entitlement period will be doubled to £4,000. This means that a parent with a disabled child will be able to pay up to £16,000 into their childcare account per year and receive top-up payments of up to £4,000. This will be achieved by amending section 19 of the Act through a separate statutory instrument.”

And for the geeks among us the full Government consultation can be found here.

This is a very important first step on the path to levelling the childcare playing field. And it opens a window for further change to address the still significant challenges, some of which I will recap:

  • Only a quarter of local authorities say they have enough childcare to meet the needs of the disabled children within their locality. 
  • Almost half of parent carers cannot access the 15 hours preschool education to which all children are entitled.
  • Childcare provision is often completely lacking in its ability to be inclusive for disabled children, either through lack of understanding of what can and should be done to allow disabled children to join childcare settings, or through lack of adequate specialist support from the local authority to provide training, resources and adaptations.

There remains an expectation among local authorities that parent carers of disabled children don't (or perhaps shouldn't) work. It is this that is all too often so damaging and it is this that urgently needs challenging if we are to make headway in enabling parent carers to fulfil their legal right to work.

We are lucky in that we live in an area where the local authority is willing to do things differently, and prides itself on providing good quality support to people with disabilities and their families, and yet even here, for our own part, we are still reliant on family to provide after-school help that enables me to keep working. Without this, we'd be in seriously dire straights.

There is still an enormous amount to do, but we pause for a moment to celebrate this small but significant win.






Thursday, 5 February 2015

About a dude

I’ve had a bit of a break from writing this blog over recent months. I felt myself losing momentum over the course of last year and also not wanting to write. In retrospect I know this is because through the act of writing, I am forced to come face to face with just exactly how I feel about my given topic and there were events unfolding last year that were so stressful, and so loaded with importance for Orange’s future, that I dared not commit words to a page.

Perhaps worse, I knew we were treading a very fine line of persuasion with the local authorities involved in decision making for Orange, and I didn’t want to upset the political apple cart during that process. I knew that whatever I wrote during this period, I would have to self-censor, which defeated the point of keeping this blog entirely.

Now Orange is in school, some of those shackles have fallen away but thankfully so have many of the difficulties and challenges we were facing. We are moving into what I hope will be a happier and more settled time for us all, with Orange getting just exactly what he needs from his wonderful new school. 

When I think of his future there, I see a fulfilled and exciting one, with great challenges and opportunities, and I trust them implicitly to do the right thing by our son.

And so this leads me to thinking about the blog again, and what to use it for. It’s taken me a while to figure out but now I have gathered some clarity on how this blog will progress. I’ve always wanted it to be a positive view of family life with a severely disabled child and I hope I can return it to being that now.

When I first knew that Orange was facing a difficult and uncertain future, and I was desperately scared of what was to come, it was other parents’ blogs that made me see through the quagmire of frankly terrifying medical terms, academic studies and reports to a brighter future. A future that included a sweet little boy, who is easy going, cute as can be, who is positively addicted to Peppa Pig and likes to shout at the telly when the rugby is on. A boy who can demolish a man size bowl of porridge, hates having his nose wiped, laughs when his sister is getting a telling off, listens sweetly to stories and who goes nuts in the swimming pool. 

If he could, he’d be that boy bombing into the pool and splashing everyone while laughing his head off.

The truth is that his disabilities do not take away from the fact that Orange really is just a boy. A little boy who is part of a family like any other. This is something I just completely didn’t understand when I was holding my tiny boy in my arms and scaring myself witless reading academic papers on rare genetic syndromes. None of them, not even the fact sheets designed for parents’ consumption, actually communicated that through it all, whatever we were facing, he would still be just a little boy, a small person with likes and dislikes, a sense of humour and the capacity for love and affection in a way that I couldn’t possibly comprehend. 

He is, to his very core, just a dude.


And so, in addition to the very necessary campaigning work that needs to be done on childcare and inclusion, that’s what I will use this blog for. To get right back on track and tell that story. To give hope to other parents, sitting, holding their tiny child and wading through the quagmire. Because there is every reason for that hope. And sometimes it just needs someone else’s story to help bring it alive.


Wednesday, 26 November 2014

Teapots And Chocolate

I'm quite a fan of tea. And a huge fan of chocolate. But we all know what happens when you try to make a teapot out of chocolate, right?

This was pretty much the scenario at our 'Team Around the Child' (TAC) meeting today. The official line is that these meetings are to bring together all of Orange's professionals at regular intervals to ensure he (and we as his family) are getting all the help and support that's needed. Sounds great...

But after two meetings in a row, where I have been given the Spanish Inquisition over how we care for Orange, surrounded by a room full of professional faces who are no help at all in assisting us with Orange's most pressing needs, I'm beginning to wonder just what they are for, beyond a tracking and auditing service for the local authority?

The two most urgent needs we as a family have had in the last year have been a) getting Orange his place at the right special school and b) finding adequate, specialist childcare. And yet not one of the professionals involved in our TAC meeting process has contributed anything positive at all to help us get there.

In fact, none of the local authority people in the room today - including the regional senior SENCO (Special Educational Needs Co-ordinator), our 'Lead Professional' and the 'Link Person' between Cornwall Council and the special school Orange will be attending in our neighbouring local authority, knew anything about the fact he'd been offered a place at the special school we've been pushing for.

Nothing. I had to tell them. And, get this. They didn't believe me. If I'd heard 'IF Orange starts at that school' any more times I think I'd have had to ask them all to leave mid-sentence. I don't know how many more times I'd have had to say 'his transition meeting is on Friday' to get one particular person to drop the 'ifs'.

I like to keep this blog positive. To put out into the world a view of life with a disabled child that is full of happiness, purpose and fulfilment, and to show the world that we are just a common-or-garden family, trying to get on in life and do what everybody else does too.

But right now I'm feeling trapped and angry. Surrounded and cornered by local authority busy bodies who sit in my living room and tell me nothing more than what I can't do, and provide no positive solutions, help or guidance other than to repeat constantly that they are here 'to support us'.

Well perhaps the local authority would like to consult with the Chambers Thesaurus that tells me in black and white that 'to support' is 'to advocate for', 'to encourage, endorse and assist'.

I had, naively, assumed that our Team Around the Child, and the Lead Professional of that team, would be our first line for any help we might need. Our first port of call for informed assistance, signposting to services that we might not know about, and actually providing practical help to work towards addressing our needs.

Instead, at each meeting I have to answer a steady stream of jargon-filled questions so the local authority can tick boxes on a document. A document that contains deeply personal information about our family circumstances that I can't even see before it is circulated to all and sundry because the local authority will not email anything to anyone outside of their own four walls.

And after the Spanish Inquisition I am told all sorts of marvellous gems like 'you choose to make your life more difficult by working' and blatantly unhelpful untruths such as 'well, the school is full, you know' (repeat x 100, and we're IN now so neeeeeerrr...).

After being surrounded by a sea of blank, pointless faces for the second time in as many months, when asking basic things like 'how can you help us find trained people to provide childcare and babysitting for Orange, when you are telling us we cannot leave him with a regular babysitter and I'm going INSANE here trapped in my own house...', and being told nothing more than we should 'ring the Family Information Service' (which we've done, and they were similarly chocolatey in nature), I think it is time to Sack The TAC.

Individually, I'm sure they are all perfectly pleasant people. Likeable and kind, I'm sure. But I was probably stupid to trust them. Naive to believe that they can actually provide any help.

And what has crystallised it for me is this.

After today's TAC meeting I was absolutely beyond the end of my wit. In desperation, I poured my heart out to Facebook and asked if anyone could help us find some specialist childcare.

Within an hour, I had messages and phone calls coming out of my ears from people (some of them professionals with access to the same information as those in our TAC), giving us details of local charities that provide specialist childcare, organisations that provide nursing care in the home that we can use some of our Direct Payments to fund, websites we can use to search for babysitters with special needs experience, and local support groups that might be a good source of contacts.

I'd like to know why my sofa full of professionals couldn't, or chose not to, share any of this information with us when asked. I'm pretty sure I know. It's either incompetence, or money, or both.

I've had an extremely large gin and tonic. And an entire box of Maltesers. For now, I'm off to bed to read about Buddhist Monks, and calm my seething heart.

But tomorrow? Tomorrow, it's firing squad time.

Wibble.