When is progress, progress, and what is it anyway?

When is progress, progress, and what is it anyway?

For the last 17 days I’ve been an honorary member of the V-Gang. Persuaded by the ever growing throng of vegans in my family I thought I might give it a go too, in a ‘god I am actually 40 now and should really get my act together’ attempt at improving my health, and because, well, climate change.

In that time I’ve consumed a massive amount of greenery, learnt how to cook aubergine and discovered that far from craving cheese, it now (to me) stinks like a farmyard slurry pit. I have more energy, my wobbly ankles don’t ache and creak in the mornings anymore, and my hair, skin, nails and gut flora seem to be loving the micro-nutrient injection.

I was warned there might also be some weird side effects, which I totally (silently) poo-pooed. I was told that about three weeks in, I might start to feel like my brain has been re-wired, with vivid dreams and memories sparking from distantly buried neurological quarters, freshly exhumed from a (now disintegrating) meat fog.

I thought this was totally stupid of course. Until it began happening to me too. I can only describe it as akin to reshuffling a dusty old deck of playing cards. Every card has been there the whole time but just hidden out of sight within the pack. Now, each card is being exposed to the air, its face on display, ready to be picked and matched in ranks or suits, to be made sense of in a logical way.

What has appeared for years to be a bit of a joker in the pack, an irritating mosquito of a memory that I just couldn’t swat away, or make any useful sense of, was a random visit to a palm reader I made in my late teens, at one of those rip off psychic fairs that most sensible people know to avoid.

For decades, the voice of the palm reader has rung in my ears at just about every opportunity I give myself to decide I am a total failure at life and need to do better (which is just about every day).

His words to me were: “you need to pick a path, and stick on it, otherwise you will spend your whole life bouncing around from one thing to another, and never make progress at anything”.

He may be right, he may be wrong, but I’ve never been a huge fan of the straight and narrow. Which is probably a damn good thing because life in our house is anything but linear.

The bit that I had forgotten, but that has come back to me in a fit of vegetable based clarity is that the palm reader also told me I would have two children, but that it would be ‘complicated’. He didn’t know how, or why, but there would be some uncertainty ahead.

On that front, he hit the bullseye. There is nothing straightforward or commonplace about either of my children, or the way in which they progress through the world. Back then, sitting in front of the palm reader, the old me would have decided that was a pretty terrifying prospect, but now?

Now, I am in awe of both of them. I couldn’t be prouder of their differences.

I know that most people come here to read about Lawrence. To find out what progress he has made (plenty, in his own unique ways), or whether he has a diagnosis yet (no, all medical tests still say ‘normal’).

I know you don’t come here to chew the plant-based fat with me over the merits of avocado or hummus, or to join me in rediscovering random bits of my card based memory filing system. So, here’s a little update on the boy, and the ever growing list of valuable things he’s teaching me about life.

In essence, Lawrence can now do things that for some time I stopped hoping might ever happen, like being able to communicate what he wants. But also he still can’t do things that for a long time I thought would make life unimaginably awful if he didn’t, like, say, walking or talking.

Luckily, I was wrong. Almost nine years in to raising Lawrence, life is very far from unimaginably awful. In many ways, it’s totally ordinary, and in others it’s wildly different from the every-day.

The measures of progress and happiness that I thought would be there as some kind of roadmap through parenting just aren’t present in our lives. But there are others that have shown their faces instead. The rites of passage are different but no less in value. Perhaps it’s just like occupying some kind of third dimension, or a weird dream where everything is familiar and unfamiliar in equal measure.

I won’t ever describe Lawrence by rolling out a great long list of conditions, disabilities and forboding acronyms. In parent carer circles, this seems to be a way that a lot of parents talk about their children, and I understand why, but it’s not for me.

I have also learnt that describing or measuring him by conventional milestones is not something I want to do. Because I know how it feels to be on the receiving end of that, when you can’t join in with a conversation because your child’s life experience and abilities are just so different.

Also, when I step outside of my black-and-white thinking brain for a few moments, I see that progress isn’t linear. It’s up, down, sideways and back to front. And that our arrows don’t all point in the same direction. Sometimes they change direction, too. Often, many times over.

While there have been leaps and bounds in his development in the last year, I know that this could readily change, so to commit too much value on them is, in my mind, misplaced.

I don’t believe it’s right that anyone’s contribution to the world or personal value should be measured just by a tick-list of societal-approved achievements, what they can ‘do’ or how much they have.

So, of the boy, I will say this instead.

1) He’s hilarious and gets funnier and funnier every day. He has developed the most raucous laugh that tells anyone in the room he’s a total nonsense maker, on the look out for devilry and mischief. Joining in a joke with his favourite people is Lawrence totally on top of his game. Monkey business is his middle name.

2) He’s nearly 9 and has sprouted an attitude to match. My daughter likes to tell me that it’s always the Year Fours at school who are a total pain in the neck and true to form, Lawrence seems to be following that pattern. At home, at least. He knows just how to rock this ship when he so chooses.

3) He knows how to communicate in ways that most of us forget we can do, because we have become so hyper focused on conventional language. With a look, a touch, a reach or a facial expression, Lawrence can pretty much run the show. He also simply can’t say one thing but mean another. There’s no pretence, socially complex small talk, reading between the lines or pass agg weirdness with this boy. This makes him a better communicator than most, in my mind.

We’re working on specifics, as sometimes it can take a while to figure out which particular season or episode of a show he’s asking for, or whether he hates his dinner or is just trying to sidestep to get to pudding (he’s very particular and he’s not shy of telling us when we get it wrong).

I’ve learnt that just because a person can’t talk, or write, or press buttons on a computer to say something, it doesn’t mean they can’t get their point across. And actually all we need to do is listen differently.

4) He has learned how to express love with unmistakeable clarity. With the whispery touch of his kind hands, a smile that surfaces from deep behind the eyes and lingers when it connects with your own, a contented sigh and a full body lean-in to a cuddle. Only the other day, he inch wormed into the kitchen on his belly, just to give his dad a kiss, before inch worming back to his programme on the tv.

5) He’s showing us again and again that he’s probably way more attuned than most of us to the things in life that matter. And for me, this is the big one. He’s pretty delighted with who he is and just couldn’t give a crap about what others or society expect. He wants his people around him, to enjoy each day for what it brings, to entertain and be entertained, and to be at one with the world around him. A regular re-set, taken by sitting at the water’s edge, watching the waves and listening to their rhythms, sets him up whatever comes next in his day.

6) His health is good. For really, all the value judgements and assumptions that can be made about disability and quality of life, ultimately it’s his health that can have the heaviest influence over his enjoyment and fulfilment in life. And right now, he’s on top form.

And so what of progress? Well, many of the conventional indicators of progress just don’t apply. And that’s ok. Except for one.

There’s one place where we’re stuck. On an endless loop. And by god do we need him to move on.

This time around, Lawrence embraced Christmas with gusto. He got it. So much so that he came home with a Star of the Week award from school for having a ‘very positive attitude towards his Christmas Show’.

Well the positive attitude didn’t go away when the decorations came down. Of course there are no more Christmas performances happening at school, so he’s transferred his enthusiasm to one, single, five minute long Christmas themed episode of Peppa Pig.

Mr Potato’s Christmas Show. Featuring everyone’s favourite Christmas vegetable, Little Sprout.

Where, apparently, the magic of vegetables never ends.

We really wish it would though.

Or maybe there’s a lesson in there too… hey V-Gang?

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