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!

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.

Have you seen this Bert? #findbert

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

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

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

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

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

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

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

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

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

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

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

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

 

Three is a magic number

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

It’s not confidential, I’ve got potential

I’ve learnt something about myself these last few weeks. When it comes to writing, I’m the antithesis of a fair-weather friend. While the temperature has been rising in the glorious sunshine here on the south coast of Cornwall, my motivation to put finger pads to type pad has been languishing below zero. Somehow sitting on the beach and drinking wine has seemed a more fulfilling and appropriate use of time. The Beep has splashed, paddled, shrieked and run about with her friends, Mr Mavis has swum in the sea and consumed an even larger amount of wine than me, and Orange has been mostly enjoying the sensory input provided by covering oneself entirely from top to toe in sand. Beach Therapy For All, if you like.

But this evening it is raining. The tap, tap, tapping of rain on the slate roof has filled the silence left by the now absent seagulls who have been cawwing, cooing, soaring above the house and occasionally divebombing our cats in the sunny weather. Now the wet weather is here, I’ve snapped out of holiday mode and am back behind the keyboard, tap, tap, tapping in time with the rain.

Of course the learning of recent weeks goes well beyond and above discovering my own ability to take procrastination to a whole new level when the sun comes out. Orange has been constantly surprising us with his ability to learn new things and has had a rather exciting few weeks…

Back in May, I took Orange to meet neuro-developmental guru Andrew Brereton, who runs the Snowdrop Programme for children with all sorts of brain-related disorders. The programme is so fascinating, it is more than worthy of its own post which I shall write in due course, but in essence, it’s a programme of neurodevelopmental stimulation which is designed to help children like Orange reach their full potential. Orange had an assessment with Andrew that left me feeling so uplifted and positive about my boy. I have full comprehension of the fact Orange has a great many difficulties, but hearing him described as a ‘sociable young boy who is full of potential’ was such a world away from the endless reports we receive spouting medical jargon that bear no relation to the boy we know. It left me feeling positive and reminded me to focus on what Orange can do, rather than what he can’t and to remember to always give him the opportunities and the space to grow and develop, and not to let him be pigeon-holed or written off as a ‘Boy Who Can’t’.

I had started to blinker myself into preparing for a life of caring for a little boy, who would eventually grow into a not so little man, who could not move his own body around, or know how to ask for a drink when thirsty, or use the toilet, even. In preparing myself for this I had lost a little spark, withdrawn hopes and dreams, and shifted my mindset too far in a direction I actually don’t know yet if I need to map out.

Hearing Orange described as having ‘potential‘ has recalibrated my mindset entirely. And since that day, something remarkable has happened that has left me a little awe struck at the power of positive thinking. It could be an enormous co-incidence, of course, but in the days following his assessment Orange quietly just got on with doing some amazing new things. Things I had begun to gently erase from my list of hopes for him but that are now centre stage on his agenda. The ‘Boy Who Can’t’ is now most definitively The Boy Who Can. The boy who can sit himself up from lying on the floor. The boy who can inch himself along the floor, commando style, to get to a toy. The boy who, when feeling under the weather, or just a little sad, can now ask for a ‘cugga’, his very own Orange branded mash up of a cuddle and a hug. The boy who can put a handful of spaghetti in his own mouth, and take a bite from a bbq’d sausage. The boy who can wave and say ‘haaarrrooow’ when a pretty lady arrives at the back door. The boy who can kiss and cugga his toys and ‘sing’ harmoniously along to a tune and bang his feet in time to the music.

Experimenting with spaghetti

In the time it has taken me to restore faith and hope in Orange’s ability to learn, he’s just gone and got on with doing it. Ever since he was small, he’s had an innate capability to match his actions and demeanour to the mood in the room. When faced with Dr Doom, his first paediatrician, he switched off. Completely. Think I can’t see? Well then I’ll just sit here and not look at your face. Think I can’t sit up. OK, I’ll just lounge here on the couch listlessly… But hang on, you, oh lovely Portage teacher, think I can learn to talk? Right then, I choose you to receive my first wave and a friendly hello. Think I’m a boy with potential? Great! Just watch me.

Left playing on my front…ta da!

As well as the renewed positivity in the house, spurred on by the glory of sunshine, warmth and sparkling seas, Orange has been receiving a lot more input of late. His Snowdrop programme is a daily affair of repetition, repetition, repetition. Body brushing, massage, deep pressure, spinning, auditory stimulation, visual tracking, over and over and over. Designed to help desensitise some of his over-sensitivities and bring him more in touch with his own body and brain, and how they connect, it’s a Groundhog Day fest of tactile, vestibular and sensory input. Since we started, I can already see great changes in him. Orange is holding himself better, is more steadfast and sure-footed in his body movements, direct in his eye contact, alert and aware of his surroundings.

In recent weeks we have also been taking him to weekly hydrotherapy, upped our game on the daily physio and have been partaking in the most brilliant, positive, eye-wateringly fabulous weekly sessions with the aforementioned lovely Portage teacher who has such a lovely way about her, Orange has decided he wants to show off at every visit and do something new that makes us both blub.

Buoyed up by Andrew’s positivity about Orange, I’ve found new strength not only to get on with his new programme, but to focus time and attention on all of Orange’s therapies not just with greater intensity and enthusiasm but also with a sense of joy and freedom in the knowledge that I can help him fulfil his potential, whatever that may be.