Alternative Advent: a sensory countdown to Christmas

Alternative Advent: a sensory countdown to Christmas

In the 19th Century, German protestant Christians counted down to Christmas by marking 24 chalk lines on a door and rubbing one off every day in December. Two hundred years on and advent calendars have become an industry all of their own.

If you’re a parent of an eight year old girl, you may have fought and lost the same battle I did over this year’s must have £25 Smiggle advent calendar. It’s not chocolate this generation of children crave at advent, but artificially scented stationery.

And if you’re a partner to a 30 or 40 something man, you may have fought and lost the same battle I did over an enormous portion of the kitchen being given over to a Beer Hawk advent calendar. Basically 24 bottles of beer in a box, dressed up to look like an advent calendar.

For Orange, neither beer nor whiffy stationery is on his wishlist, and chocolate is a no go zone. But he’s 6. And he needs an exciting countdown to Christmas!

So this year we have revived our idea to create him a sensory advent calendar. Throughout the month of December, Orange will have a different Christmassy sensory experience each day – a taste, a smell, a sound, a feeling – to get him into the Christmas spirit.

Last time we did a sensory advent calendar, I was super organised and planned what we were going to do each day, making a box of sensory delights including cinnamon scented play dough and peppermint scented rice bags.

This year, I’m well behind the curve. Something to do with juggling my job, re-inventing my freelance career and managing the mountain of school-led Christmas to-dos.

Luckily, my much more organised friend, who writes at The Inclusive Home, has created a #sensoryadvent countdown for us to join in with.

Sensory advent

Day one of #sensoryadvent is music. One of Orange’s favourite things. We started off the fun with a musical plush Santa soft toy.

The music hit the mark, but Santa?

Well, let’s just say I hope the cats like him more than Orange did. Or his Christmas could be pretty lonely…!

We will be sharing Orange’s #sensoryadvent on Instagram and Facebook. Tomorrow is ‘pine’. Any ideas where to find a pine cone in Cornwall?!


Undiagnosed: unexpected but not unusual

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.
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.