Undiagnosed: unexpected but not unusual

I’m often asked if I knew when I was pregnant that Orange would have disabilities. For many reasons that I have written about previously, I’m glad that I didn’t. His disabilities were completely unexpected.

When I started to realise that life might not be straightforward for Orange, I wanted to know why. Why was it that he couldn’t move his head, spluttered when he fed, slept all the time and did this odd stiff banana pose when we picked him up? Why didn’t he seek out my gaze like his older sister had? Why didn’t he smile? And what about that failed newborn hearing test?

When I googled, the answer I got was cerebral palsy.

I spent the first weeks of Orange’s life terrified that he had cerebral palsy and that no-one else had noticed.

Of course, over time, they did.

“I’m not sure about his muscle tone” said the GP at his 8 week newborn check. “Come back in four weeks, won’t you”, he said.

“Has he woken up yet?” said friends, half jovial at the fact my second baby slept so much he was more than making up for the pinned-eye waking torture of my first.

As the months rolled on, and Orange missed milestone after milestone, we were whipped into a system of genetic testing, brain scans and neurological assessments.

Nobody mentioned cerebral palsy. In fact, no-one mentioned any diagnosis at all.

At the time, I held on with hope that if a diagnosis could not be found, that meant Orange was fine after all. He would catch up with his milestones, it was just the stiff neck from birth causing his delays, that’s all.

Orange was almost one before anybody said to me that he would almost certainly have difficulties for life, that we wouldn’t know what they would be until he got bigger, and that we might never know the reasons why.

Until that point, I had no idea that ‘undiagnosed’ was even a possibility for a severely disabled child. And at the time, I also had no idea that there were others in the same nameless boat.

I had so many questions.

Would he walk? Would he talk? Would he need to go to a special school? What about epilepsy, I’ve read that’s a thing for lots of children with disabilities? How will I know if he’s having seizures? How long will he live?

Nobody could or would answer them.

I tried to answer them myself by reading every medical study and report available on the internet about rare genetic syndromes. But all that could be found there was fear. So I stopped.

I asked geneticists and neurologists about specific tests and syndromes. But all that could be found there was the result ‘normal’. Every medical test that Orange has ever had has recorded the result ‘normal’. So I have stopped that too.

There are no answers, except those that Orange is able to give us himself.

He is six now. He hasn’t walked. He hasn’t talked. He does go to a special school. And yes, he has epilepsy. And boy did we know when that started.

Without answers, for a long time we had hope that Orange would catch up. When he didn’t, we learned to replace that hope with a new one. That life could and would be fulfilling and wonderful anyway.

Orange has shown us that what an academic medical journal may have led us to believe would be a difficult and frightening life is anything but. They don’t tell you about the fun. The laughter. The sweet little habits. The kind hands. The bond you have with a child who needs you on a deeper level than most.

They also don’t tell you about the wonderful people you will meet when you have a child with disabilities. Kind and dedicated teachers who see your child’s personality and achievements and celebrate them with you. The respite carer and passenger assistant on school transport who become like extra grandmas.

The families you will meet, sitting alongside you in the boat without a name.

The friendships I have made with other families who also have undiagnosed children are what gets me through when there is no answer to a difficult question. Because while our children may all be different, often we are all floating about in the same unknown territory.

And there are thousands of us.

Every year, 6,000 children are born with an undiagnosed condition. SWAN UK is the only charity in the UK that provides support for families with an undiagnosed child.

It is through SWAN UK that I have made lifelong friendships. Together we celebrate our children, help each other out with ideas for equipment, home adaptions, how to handle meetings with medical and council staff, share frustrations, support each other through grief and loss, look out for each other’s mental health, laugh together, cry together.

But while our group is now at over 1,000 families, we know there are so many more who may need that support.

Today, it’s Undiagnosed Children’s Day, and we are asking people to help us find other families with undiagnosed children who may need support and friendship along this unexpected, but not unusual, path.

So if you know someone who might be in our shoes, put them in touch with SWAN UK.

Happy Undiagnosed Children’s Day!

Uncommon Parenting 101: Lessons I’ve Learned About Surviving and Thriving

 

There’s no doubt that raising a child with disabilities can change you. I’m no subscriber to the belief that ‘special children are given to special people’, nor that having a disabled child automatically adorns a person with a Pollyanna-esque gratefulness and wonder.

It would be fair to say that the experiences along this uncommon parenting pathway can shift your centre of gravity fundamentally. But learning to navigate this path, and find your way along it with a spring in your step, can take some practise and sometimes determination.

When Orange was tiny, I didn’t want to be on this path. So for about eighteen months, I still hoped that he would be fine. Without any firm diagnosis, and with plenty of developmental ‘catch up’ time in front of us, there was still room for a small chink of hope that we weren’t really on this path at all. That one day all my fears would be let go as unfounded.

The reality was that many of the things I was afraid of back then did indeed turn out to be on our path. In the first few years of Orange’s life, we rollercoastered head on into some of my biggest fears. Non-walking child – tick. Non-verbal child – tick. Special school required – tick. The big one – epilepsy, seizures that stop your child from breathing – tick. And I hadn’t even anticipated the things that would be most anxiety inducing; negotiating the education and social care systems to get him what he needs to have a normal life.

Even in my darkest moments, though, I never wanted to back myself into a corner through fear or anger. I was not going to be the person asking ‘why me?’, nor the one in denial, or embarrassment.

To me, the ultimate ‘failure’ and loss of control would be to have felt aggrieved at the unfairness of it all and let this overcome my world view. Even though I had no idea how I would do it, once I knew our lives would be different I always wanted to embrace it. To turn challenges into opportunities and to find happiness and fulfilment right where sadness or isolation could have easily set up camp.

So I had to adapt. To find creative ways to establish some sense of control. To feel a little bit normal in what felt like deeply unusual circumstances.

I’m still learning, of course. And I’ve also learned that our circumstances aren’t so unusual after all. Which also helps.

For those of you at the beginning of this path I won’t pretend it’s an easy one. But I will say this.

You can survive things you might have thought impossible.

You can thrive in a life you might have thought unpalatable.

And you are most definitely not on your own.

You are human, and that means you’re really good at adapting. It’s what we do. What I’m about to share here is just a few of the things I have learned along the way. It might not be for everyone but it’s what I would tell myself if I was doing this all again.

You can choose. It’s completely ok to admit this might not have been the life you wanted. It doesn’t make you a bad person. So you can let go of that guilt. But you can choose whether to hang on to the sadness that your lives, and your child’s life, might not fit the vision you had in mind.

Life is unpredictable and if it wasn’t this, there would almost certainly be some other challenge round the corner that would throw best laid plans off course. You can choose to embrace life’s unpredictabilities or to be blown about by them. That doesn’t mean denying that life will sometimes bring sadness, grief or regret, or that any of us might have more than our fill of bad luck, but that you don’t waste the good times wishing your life was different.

 

You do need help. I’m an introvert. I’m also fiercely independent. I don’t do asking for help or showing vulnerability very well at all. But there have been times when I couldn’t have coped with a situation without the help of others. Figuring out the statementing process and securing the right school place for Orange would have been impossible without the help of wiser, more experienced SEN parents. Jumping in an ambulance with a non-breathing child and not having a kind neighbour step in to care for his sister. Maintaining a career without the help and support of family and the right childcare and respite network.

I couldn’t manage any of these situations without help.

So don’t hold back in seeking out help. Online, in groups, at school, at work, or within your own family and friends. Find it and nurture it. You will find that you can give as much as support as you take and this will make you feel good and useful too.

Learn to recognise anxiety. I didn’t, until very recently. Last November in fact. So almost six years into this uncommon parenting life. Before then, I just stuffed it away by over-filling my days with an impossible number of tasks and washing it down with enormous boxes of Maltesers and Kettle Chip chasers. This seemed like a pretty successful strategy until I was close to burnout, my jeans no longer fit and I stopped wanting to leave the house.

So don’t do that.

Listen to yourself, find a healthy outlet for negative emotions and nurture gratitude. I thought it was deeply cheesy at the time, but one of my Christmas stocking fillers this year was the ‘Five Minute Journal’. I don’t exaggerate when I say it has been life changing.

Preserve and create energy. Because you will need it. I won’t lie. Lifting, carrying, changing and feeding a full-size child is physically demanding. Advocating for your child’s educational, housing and equipment needs with your local authority – who you won’t want in your life at all but you will find are a necessity – is mentally and emotionally exhausting. Surviving an emergency hospital admission, or waiting around in wards and hospital waiting rooms for medical appointments or diagnostic tests is anxiety inducing.

These things can’t be avoided. And they might be more frequent that you would like.

In the first few years I treated these moments as being in ‘crisis mode’, that I could get on track with healthy eating, exercise and better sleep habits when those times passed so it was perfectly ok to stop at McDonalds on the way home or to stay up late watching Netflix and drinking wine like some kind of special reward.

Only those times never really passed. So I spiralled into an unhealthy pattern of eating crap, going to bed late and sitting about on my arse.

This one’s most definitely a work in progress but I am feeling so much more balanced and energetic in the last month having started the Eight Week Blood Sugar Diet. Next stop, exercise…

One step in the right direction

Maintain your friendships. Sometimes you will feel like you can’t. You’ll feel that your life is different now and how could they possibly understand. They won’t always get it right. But give them a chance. They are your friends for a reason. You may find that the people who support you day to day may change, but your long standing friendships will give you a sense of normality and a connection to yourself ‘just as you were’ that you will find you want to come back to, again and again. It will keep you grounded and connected to the outside world. This is a good and necessary thing.

Switch off. Mindfulness meditation was recommended to me as a way of managing the looping lists and invasive mind-patter going in my head. It wasn’t for me but I have found that writing and walking most definitely are. Preferably by the sea. Find your thing and make sure you do it. Your brain needs the space.

 

Feeling a little bit like a dickhead and hoping it’s worth it

I’ll be honest and say I’ve shied away from writing about this for a really long time. For fear that everyone else is just getting on with it and hasn’t needed some kind of survival strategy to see them through. That I might just sound like a massive dickhead. Perhaps I do. But if it helps just one person, I’ll take that.

Disabled Facilities Grants: this way madness lies

The irony of having written a post just this week about getting out of the house more as a family has not escaped me as I sit here in my house on a rainy Friday, with a broken lift outside in the garden.

As many of you will know, we had lifts fitted in our garden in February 2014, funded by a Disabled Facilities Grant and facilitated by Cornwall Council, to enable us to get in and out of the house with Orange in his wheelchair.

The construction works were fraught with difficulty, in the hands of wide boy contractors and a council adaptations team that didn’t know what they were doing, or were off sick or on leave throughout the project.

As a result we were left with lifts that never worked reliably from week one, and a garden completely obliterated by builders who decided to work to their very own unique concrete obstacle course design.

For the past three years, we have complained and negotiated with the council to rectify these problems. To provide us with lifts that work, and to rectify the dumpster fire that is our garden.

I wrote about it in this post from August 2015, when our lift dangled open dangerously leaving a two metre drop for one of us to fall in. This made front page news locally and finally kicked the council into action to think about rectifying the issues.

Being diplomatic, it has been a learning exercise for the council. For 18 months.

At times, we have even felt listened to by the council, and that we had made progress together, and helped them to improve their processes for managing Disabled Facilities Grants.

Today, three years since the first ill-fated works were done, we were due to have our kick off meeting with the council adaptations project manager and their engineer and the new contractors to discuss the new works.

I had hoped this evening to write a really positive and happy post, celebrating that we had a start date for new works to begin, and that we had got through this difficult process with the right outcomes, that the council had listened and learned from their mistakes and this would help not only us but other families needing adaptations works in the future.

Unfortunately I cannot. Because the council have let us down again by deciding not to show up to our kick off meeting. They cancelled it fifteen minutes after they were due to arrive. Apparently because they could not drive to us in the rain, down roads that both we and the double decker bus and countless other vehicles had no problems with this morning.

Instead, I have spent the last two hours writing a complaint to the Local Government Ombudsman and calling a lawyer, as well as negotiating with the council yet again to send an engineer to fix the broken lift outside.

If I were to count up the hours, days and weeks my husband and I have spent trying to resolve the issues related to our home adaptations, the countless lengthy meetings, emails, phone calls, coaching the council through their own management of the contracting firms they hire, or how to dial in to a conference call (I kid you not), and negotiating with them to fix the mess they have caused, I have no doubt at all of the significance.

And yet this issue is not unique. Up and down the country there are families dealing with the same issues. Funding applications that are declined, council adaptations teams giving bad advice on where equipment and adaptations should be fitted, work being undertaken poorly so it has to be redone, families with broken lifts who can’t get in or out of their own homes.

It’s an issue that the Local Government Ombudsman has investigated repeatedly in the past and need to do again. It needs a national spotlight on what is a systemic and endemic problem affecting families all over the country.

Disabled Facilities Grants should be a good thing. To enable families to do basic things like get in and out of their homes, move around and bathe, eat and sleep safely. And yet it isn’t. Often it’s a disaster.

I will be writing to Penny Mordaunt MP, the Minister for Disabled People who I met last week at Westminster. I will also be writing to the Womens & Equalities Committee who have disabled adaptions on their radar and were discussed just this week.

If you have had an issue with Disabled Facilities Grant adaptations, please do the same or feel free to share your story here if you would rather stay anonymous. Equally if you have positive adaptations stories to share please do so we can shine a light on good practice!

Project ‘Get out of the house 2017’ #wheelygood

You know those grey February days when you think it should be spring but it just isn’t quite yet? When the deliciousness of summer beach picnics and lounging about in the park has faded just a bit too far round the memory corner and your feet have forgotten what it means to be flip-flop ready?

So, for me, that’s today in a nutshell. Sat under a blanket for the third day running in the inhospitable company of a vile and flu-like thing, I’m going more than a little four-wall-crazy. And when daytime TV becomes intolerable the internet is my friend between naps, nose blows and making irritating requests for water and ‘something spicy and scratchy’ to eat.

So I’m planning some family days out.

This year we promised ourselves we would do better at getting out and about to explore the beautiful part of the country we live in. Nestled in south east Cornwall, we have all of not just Cornwall but also Devon right here on our doorsteps but we have fallen into routines and habits that mean we often visit the same places. Partly because we like them but also because for us they are ‘safe’ options.

We know that the Eden Project has a Changing Places loo with a bench and a hoist so we can change Orange and that the whole place is a wheelchair accessible, sensory paradise where we can always get something delicious, allergy free and mashable for Orange to eat. It’s an easy, enjoyable and inspiring day out for all of us.

And the wine is good. So it’s always a win.

Out late and totally winning at life at the Eden Project

We know that we can get an all-terrain wheelchair onto any of the beaches in St Ives, and that the food options there are top notch but that the disabled parking only lasts three hours and the alternative, the train in and out from Lelant, isn’t wheelchair accessible.

We know we can easily get a wheelchair round the National Maritime Museum in Falmouth then go across the (flat) square and eat lobster at Rick Stein, or visit the National Marine Aquarium in Plymouth and dine like kings at Rockfish afterwards but, while all of these venues have plenty of room to install one, there is no Changing Places loo at, or even near, any of them.

It’s a car boot job or filthy floor of the ‘disabled loo’ (is that mud or poo, water or wee I’m kneeling in today?) to change the boy, risking basic hygiene, spines and dignity as we go.

We know that any beach with a slipway is our friend for a sunny day out with a picnic, and some beautiful wheelchair friendly walks can be found on the moors to either side of us but the same changing challenges abound.

Wet through, attempting a change on the back seat of the car in a public car park

Sometimes, the sheer planning of a day out with Orange means we don’t do it at all. Because family life can be pretty exhausting as it is, and honestly it’s often too much of a bore to try to figure out if a new place we have never been before, a new walk, attraction or picnic spot might be accessible enough for us.

Strangely, access statements don’t seem to contain the information you need if you are going out and about with a disabled child who is 100% reliant on a wheelchair.

We’ve had some pretty dire experiences on days out where the accessibility has not just been an afterthought but where there has been no thought at all.

It was on a ‘challenging’ family day out to Cotehele, a local National Trust property, just before Christmas when I figured that since over half a million tourists visit the south west every summer and 2% of those are likely to be wheelchair users, that’s over 10,000 people a year who  are being poorly catered for.

10,000 people a year. Most of whom are probably here on holiday with their families, because wheelchair users don’t travel alone any more frequently than ambulant folk do.

So that’s actually 30,000-40,000 people a year visiting Devon or Cornwall who need better disability provision, and clear information about that provision, so they can enjoy a family day out.

Even with the distinct advantage of living in the region and knowing where to look, planning a family day out and being confident we will have everything Orange needs is a military exercise.

Just last week, I was planning a walk on Dartmoor and had to visit six or seven different websites just to find an accessible walk, nearby accessible parking, whether there was a Changing Places loo (there wasn’t), and whether there was an accessible child-friendly pub/restaurant/cafe anywhere within wheelchair striking distance that would serve something Orange could eat and that we would all enjoy. That wasn’t booked three weeks in advance.

I’m ashamed to say, I gave up. We stayed at home.

We can’t keep doing that, though. Because venues and owners of public facilities simply won’t be persuaded to install accessible facilities if they don’t see the need. And they won’t see the need if we all stay at home.

I know the National Trust staff had never even thought about the negative impact of keeping their accessible entrance and exit at Cotehele under padlock and key (that you had to go into an inaccessible building and join a queue to request to be unlocked) before we pointed out to them how exclusionary that was.

Guess where reception is? Up some steps, ta da!

I filmed it and everything, because I had total National Trust hives by then and really needed to leave… 

Trying to leave Cotehele in a wheelchair

But fresh in anger we made a promise to ourselves. That we would go out and about with Orange in his wheelchair in a much more intrepid way than we have. Because we need to get out and about for our health and wellbeing. It’s a fundamental need, as well as a nice thing to do.

I also made a promise that I would use this blog to start to build a useful resource for people who might be planning a holiday or a visit to Devon or Cornwall and who are finding it hard, like we do, to find places to go on wheels. With information that’s more user friendly than a tick box access statement. A little mini guide to getting out and about as a family with a wheelchair user in the south west.

It will start small but, since we’re never, ever moving house again (not just because we love it here but also because disabled adaptations will see to it that we can’t, but that’s another tale), I figured that over the years it might build into something really handy for people.

Having sunk to a new flu-based low of watching Parliament Live for two days now, this morning I stumbled across the #disabilityinquiry in which Changing Places loos were a hot topic.

It reminded me of our promise to get out and about with Orange, to go to new places and to start to build a place online where families can find genuinely useful accessibility info about our beautiful part of the country.

So I suppose this is the distinctly low key launch of what I am going to call #wheelygood. Or not. Watch this space for our first trip out, once this flu-vile thing-bug interloper buggers off.

Orange This Way will be taking part in Disabled Access Day, 10th-12th March 2017

 

Neither beginning nor ending be…and other lessons.

The conversation went something like this:

“2016. What a shitter hey. You know I’m really looking forward to the new year just to see the back of this one.”

“You can’t blame the year for all the shitty things that have happened.”

“No, no you can’t. But as humans we like to compartmentalise and sometimes it is healthy and natural to want to draw a line in the sand.” 

“I just got sick of hearing ‘it’s because it’s 2016’ when something bad happened. It’s stupid to blame the year and it devalues the actual thing that has happened.”

“I’ll just be relieved when this one’s over, that’s all.”

And so 2017 has begun and the world has heaved a collective sigh of relief. Hasn’t it? Haven’t you?

No?

The start of a new year often brings with it the anticipation and excitement of new beginnings and possibilities and the closure (satisfying or otherwise) of a chapter complete. Some sense of change or of progress. Of time being on our side again.

And yet this time feels different.

I see people all around me who have begun 2017 not with fresh-faced wide-eyed optimism or gung-ho determination but instead with a cautious hope and gentle stoicism.

Perhaps this is just what happens when you are nearing 40 and life experience has brought with it a few more knocks along with the years?

Perhaps it’s what happens when we see humans all around us causing destruction or making decisions we think are dangerous or stupid?

Perhaps it’s what happens when a generation of baby-boomers’ kids, for many of whom there was always something bigger or better each year as globalisation took off and economies, property and job markets boomed, have now grown up and realised that there isn’t so much, anymore? That those bigger, better life experiences, dreams, houses and things are harder and harder to reach for more and more people?

Perhaps we’re at a collective societal turning point, or perhaps I’m on my own here but for the first time ever I didn’t feel that new year sparkle. That fresh wave of excitement that anything is possible and that it’s going to be a good year, this 2017!

My year.

Your year.

Our year.

Because you can’t guarantee a good one any more that you can predict a bad one.

Nothing in life is certain, after all. Orange has taught me that. He has taught me that the unexpected can happen to anyone. He has also taught me that some of the very things I thought I would be most frightened of in life, I’m very capable of dealing with. That some of the things I thought were scary aren’t scary at all and that even in proper white knuckle, heart-pumping life and death moments I can still rely on myself to do the right thing at the right time.

Orange has taught me to never assume and to always have hope. To feel the fear and do it anyway (with the exception of roller coasters and zip wires, that is).

So why, as I sat on the sofa in a post-Christmas cheese fug could I not feel that fresh-start excitement, that ‘clean pages of a book waiting to be written’ feeling I’ve always felt at this time of year?

As I sat and pondered, my mind freed up by two weeks off work and a body surrendered to the sofa through sheer weight of Toblerone and Stilton alone, I realised what I was looking for was something else entirely.

On the wall next to me was a photograph. One of those enormous canvasses that was so fashionable circa 2010-2012. A black and white image of a family, our family, sitting among the wild grass and sand dunes above Gwithian Sands in west Cornwall.

Not a particularly flattering photograph of any of us, my inner critic would say. Two slightly flabby, tired parents wearing absolutely terrible rain coats (spot the Londoners who had to make emergency practical outdoor wear purchases on holiday), a grumpy, chilly toddler and a six month old squished tight into a baby carrier he’d much rather not have been in, thank you very much.

We’ve certainly had our more photogenic moments.

But there is a story behind this photograph that explains why it deserves its place on our wall and in this post.

It was 2011. It had been ‘our 2016’ before we knew what a 2016 was.

For us it was the year that we felt all the fear but hadn’t yet learned that we could do it anyway. In love with our newborn son but so deeply afraid of what was happening to him, or not happening, and why. To what it would mean for us, as a family, and our lives that we had built.

It was the year we knew we would run out of money if we carried on as we were, as Orange’s appointments meant work was an impossibility and, at that moment, for the first time ever we didn’t know how we could earn any more.

It was also the year that our home was broken into and tens of thousands of pounds worth of our belongings were stolen. My left hand, in the photo, without its sparkle. Sold, probably for drugs. Our home, still ours but somehow not.

Emotionally brittle from hospital appointments and tests that left us more fearful not less, bruised from the bully-boy interviewing of an insurance loss-adjuster who clearly thought we were frauds, and apprehensive of a house sale that would save us from bankruptcy, our lives as they had started at the beginning of 2011 were unrecognisable. Uncertain and with no real plan ahead.

And yet we had hope. Hope for the future, whatever it might bring. Hope, not in abundance but  in adversity.

At this moment, there was no clean slate. Just a multitude of unknowns. We didn’t know where we would live, how we would live, or even how many of us there might be in that future ahead.

But there was hope.

And when I look back at that photo now I know I could tell that younger, fearful and fragile version of me that we were right to have that hope. Without it, I wouldn’t be sitting here writing this now in our house by the sea in the place that we love.

So as the first week of the new year cranks up its gears, not a whole lot differently from the last, and the uncertainties ahead are personal, professional and global all at once, for a great many of us, all I can say is to hold on to that hope.

Even when you are flying by the seat of your pants or baby stepping one foot in front of the other to survive.

Even when self-belief and circumstance fail to show up on your side.

Here’s to a hopeful, healthful and fulfilling 2017.

With love,

K xx