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

 

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

 

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.

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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.

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.