COVID-19 Chronicles: Episode 1 “Solitary times in an information vacuum”

COVID-19 Chronicles:  Episode 1                       “Solitary times in an information vacuum”

If there’s one thing that raising an undiagnosed kid has taught me, it’s that living with uncertainty is hard. Not being able to imagine what the next year, month, week or even day might bring means that normal daily life is awkwardly bookended somewhere between denial and panic. You can fill the shelves with plenty of good stuff in between, but there are still days when the bookends themselves stand taller on the shelf than the many wonderful narratives they frame.

Today, the bookends seem to have grown like beanstalks after a long night of nourishing Spring rain. Somehow disarmingly taller in the morning, caricatures of the tiny seeds said goodnight to just the evening before.

Except these are the beanstalks of nightmares. Far uglier and more spectre-like than even the ones dreamed up by our infant selves after a particularly theatrical fairy tale reading before bed.

For many of us who have vulnerable family members, whether that’s a disabled child, a relative in treatment for cancer, or loved ones with long term conditions, we have been oscillating with greater frequency between denial and panic for some weeks now. Hoping that this viral colossus would swerve, or spare us, but with a rising, racing panic in our chests, galloping ever faster as the deafening silence from our government casts us further and further adrift.

Just a few weeks ago, gentle jokes flew around in offices and coffee shops about quite fancying the idea of two weeks at home. Not so much liking the idea of catching coronavirus, but if we had to hunker down for a bit, just imagine how organised our cupboards would be, the books we could read, the box-sets we could get stuck into… Even with the slightly alarming prospect of having to entertain the kids, it seemed to be a minor inconvenience, a distant and not too unpalatable concept.

For my own part, I had imagined that because we have a disabled child in the family, we might move on preparations a little earlier than most. Stocking up the cupboards, getting ahead on work projects, and being ready for the inevitable announcement that schools were to close. Special schools first, of course, because so many more of the children are vulnerable.

I trusted that this announcement would come well ahead of the threat of the virus itself. Many of us with disabled children thought the same. Cautiously ready, expecting to have to start our Easter holidays two or three weeks early.

Except it’s now Sunday evening, following a week of national lockdowns and school closures in just about every country but ours.

Three days ago our Prime Minister stood up on television and told the nation that ‘many more of us will lose loved ones before their time‘.

The medical and science experts who flanked him said nothing of how to avoid this human annihilation from happening, talking only of flattening curves by washing our hands, keeping football fans in stadiums and their loyal Tory fans off cruise ships while propping up the NHS by keeping schools and general society open for business while the virus sweeps through.

There was little talk of protecting those most at risk from this novel coronavirus.

Still nothing has officially emerged since that time to advise those most at risk, despite a rising death toll and exponential case growth against a backdrop of ever-decreasing diagnostic testing in the community.

However, government rhetoric since that day has erroneously cemented in the minds of media and the general population that ‘vulnerable’ is solely interchangeable with ‘elderly’ in the face of COVID-19. We are told (albeit informally for now), that soon our over-70s will be asked to keep themselves at home for months while this virus sweeps through like an interminable hurricane.

And yet our young vulnerable people, children with heart conditions, disabilities, epilepsy, respiratory impairments, are – according to current government advice – supposed to be packed off every day into what may be an invisible front line, the open beaches of public transport and school communities, where the silent hurricane could make first landfall.

Much has been made by our government leaders of having to set the country onto a war footing to see through this challenge.

And yet when we truly were last on a war footing as a nation, we protected our children and our most vulnerable from the front line. Not because they were the prime target of our enemy, but because that’s what civilised, humane societies do. 1.5 million children, pregnant women and disabled people were evacuated to safer locations in just two days.

Today, the threat we face is different but perhaps equal in magnitude and potential for suffering and loss of life. But we find ourselves in an information vacuum. Adrift and othered by the popular discourse that this is a ‘mild illness for most’, ‘children don’t seem to be badly affected’ and that we must ‘protect the elderly’.

We find ourselves nowhere.

As a parent of a disabled child who has no diagnosis, this is familiar territory. We are not a central part of any conversation. Sitting on the fringes of the disability community because most of us are not disabled ourselves, overlooked at the school gates because our experience of parenthood is so different, invisible in the workplace because we fall unceremoniously down the gaps between both parental and carers policies (where they even exist).

We are well versed in taking decisions to protect ourselves and our children and in doing so in isolation, because we do not fit the mould. We are well practised in spotting threats as they loom on the horizon and doing what we have to do to keep our children safe and well.

Often our instincts speak with razor sharp accuracy to pinpoint what needs to be done, well before the voices of medical or educational authority around us see it for themselves. We have witnessed them acting too late, too many times, to look to them now with unguarded faith.

With this experience behind us, and seeing more of the same as our government shapes its next Swiss-cheese tidings to the population in face of this new threat, it is with a familiar heavy hearted certainty that many of us will not be sending our children to school tomorrow morning.

We simply cannot trust our government to give the right advice to keep our vulnerable children safe.

Are we forgotten, or are we deliberately left out to perish?

I don’t know.

But with Darwinists and eugenics-sympathisers holding the rudder as we steer our ship through this storm, it feels safer to jump overboard while we can still swim for the shore and find a place to shelter while the hurricane passes.

Jean Vanier: a mother’s perspective on vulnerability and abuse

It was May 2019 when I first encountered John Vanier. A quiet morning with Radio 4 murmuring in the background, the polished voices of media intelligentsia companionably disregarded as I swept and wiped away the debris of breakfast.

Thought For The Day was on. Not being the world’s greatest fan of organised religion, I usually find it pretty easy to close my ears when this programme pipes up. But on that day the words of historian and Telegraph writer Tim Stanley, touched me profoundly.

He spoke of the recently departed Jean Vanier, who had died aged 90, considered a living saint for his work in establishing the worldwide L’Arche charity, a network of over 140 communities where people with learning disabilities are at the heart. Where those with and without disability live side by side, in community and equality, living simply but with a crystal clear eye for what matters most in this life.

Stanley spoke eloquently of Vanier’s embodiment of ‘upside down economics’ where people are valued for who they are, for their heart, for their capacity to love and be loved.

And in these words I recognised my own experience, as a parent of a child who has intellectual disabilities. Who has taught me so much, and brought my own hazy world view into unclouded focus. Whose purity of heart, honesty of emotion and sheer joy at being surrounded by love and fun give short shrift to any pride or envy I might feel towards others with more conventional success, opportunity or money than I.

I also felt hope.

Hope that in this world of increasing violence towards people and planet, there really are living saints. Those who are motivated by good. Those who truly see what I feel privileged to see, and experience in my daily life, and have the means to make way for it in society. Who listen and learn from those who don’t speak verbal language, are not politically powerful, nor able to influence with money or action, but can show us through just being who they are, what human existence really is. That is isn’t money, or status, or belongings. That it is love.

And I felt connection.

Connection to a network of people who lived and experienced my world. And whom I could perhaps consider a safety net. If it all went deeply wrong in my world, the part of my mind that needs a plan b had decided I could retreat there, to a L’Arche community. To put all my religious stereotypes and suspicions aside, and to immerse myself in that life. As a family we would have been welcomed, I have no doubt.

It also made me feel safer about what might happen to my son after we are gone. That there might actually be people in the world who would love and value him, taking care of more than just his basic needs and helping him to flourish and find community.

Vanier spoke to me in a way that few others in public or my own life have done so.

Most people that we meet in our lives are kind. We experience very little stigma. And yet I know, I can feel, that under the surface of most people’s kindness there exists a huge gulf of understanding. Perhaps they feel sorry for us, they find my son’s disabilities sad, or find some strange inspiration in our determination to live a normal life.

And that is where the gulf lies.

Because I know they don’t really get it. They don’t value my son for who he is. Not really. They see deficit. Loss. Hardship.

Society still pushes people with intellectual disabilities to the margins, but Vanier wanted to place them at the very heart of society. He believed that this way people, and society, could find not just grace but peace.

I found Vanier inspiring. I wanted to tell everyone about him. To show them that intellectual disability isn’t the life sentence of hardship that so many believe it to be, and that here was a man of influence who could convince them. More powerful perhaps than just another (clearly deluded) mother of a disabled child boring on about how her child actually has a great life, and finds happiness and fulfilment, despite his disabilities, and brings joy to all he meets.

But this week brought terrible news. Not the galloping spectre of coronavirus, or even the verdict of the Weinstein trial. Something just as malevolent for all who are connected in some way to L’Arche, however distant and for those with vulnerable people in their families.

Jean Vanier, once considered a prophet for our troubled times, has been exposed as an abuser. A report produced for L’Arche International has shown that Vanier engaged in ‘manipulative sexual relationships’ with women who worked in his communities over a period of 35 years.

Of course, we know nothing of whether Vanier’s sexual and spiritual abuse stretched beyond those who worked for him towards the vulnerable within L’Arche communities. The charity has been keen to point out that there is no evidence to suggest this but how we can know with any certainty, is surely a discomforting impossibility.

This news has left a deep and piercing cavity of distrust among those who love and care for people with intellectual disabilities.

For it challenges everything we thought we knew about how and where abuse happens.

The narrative of late has shone a light on institutional abuse of people with autism (a neurological not an intellectual condition), and people with learning disability. We know from this narrative that when vulnerable people are in the care of people who lack knowledge or compassion, in places where safeguarding the system and the financial bottom line matters more than helping an individual to flourish, that devastating abuse happens.

We know that when love is stripped away from care, we end up with Winterbourne View, Whorlton Hall, the unforgivable mistreatment of Beth, and Connor Sparrowhawk, and the many many others that have not hit the headlines but sit hidden in Serious Case Reviews in NHS filing cabinets.

But when love and abuse sit side by side? It becomes more than a little complicated. When a shining light in our world is revealed to be nothing more than an illusion, a monster in disguise, how do we begin, or continue to trust those who seemingly love our children?

I have wrestled with this thought since the weekend when the Vanier abuse story broke. And the only conclusion I can come to is that we have to trust our guts. For when something seemingly beautiful has an ugly heart, it is usually our guts that can tell us, well before any cognitive or rational recognition can be found.

Last year when I read one of Vanier’s books, ‘A Cry is Heard’, I was inspired by his words but I also felt a tinge of discomfort. One that I brushed aside at the time but this news has shown me that I should have listened harder.

The way Vanier wrote of being brought to personal grace by being in the presence of people with intellectual disability felt usury to me. The entirety of his book centred on his own path to peace, his own redemption and finding of true meaning. The voices of the people within his communities were conspicuous by their absence.

And as I turn my thought to those who support us and care for our son, I know that I have only felt this same sense of disquiet once. A therapist slightly too entranced by my son, a warmth of welcome a touch too familiar, an approach just a little too personal. Seemingly extremely knowledgeable, and deeply compassionate, but I couldn’t shake my discomfort. I kept quiet about it, as others who saw the same therapist apparently didn’t feel as I did, crediting this person with having changed their lives. But we didn’t go back.

Maybe I was right, maybe I was wrong, but the exacting parallels of feeling I had in the presence of this therapist, and while reading Vanier’s words, have taught me that perhaps the best way I can protect my child is to keep listening to my gut.

What happens after I am gone I do not know. But for now, while I hope I never have to use it, my second brain is firmly in gear.

Our top five accessible beaches in Cornwall

I’m writing this in the bone-chilled murky soup that is February half term. When most sensible people with means have departed UK shores for sunnier climes. Last February as we sat staring out at the whipping rain and grey skies I promised myself we wouldn’t stay at home for February half term ever again, but either we’re not sensible, or we don’t have the means, so here we are again.

Instead I’m dreaming of a sunny Easter, a basking-warm May half term and a summer holiday that feels more gently baked than monsoon lashed. Hopeful.

May, June, July and September are easily the loveliest weather months of the year here in Cornwall and I always feel sad for the droves of holidaymakers who arrive each year in August, the seasonal joker in the pack, just in time for Mother Nature to give them a damned good soaking.

February, like August, is a black sheep of the weather calendar here in Cornwall. When our mild climate seems to want to do a heavy number on us. When neither the low set crispness of winter sun, nor the sky scraping blaze of summer heat can be found with any reliability.

February aside, we love to get about and explore on the beaches. It’s one of the main reasons we moved to Cornwall in the first place. Over the last eight years, we’ve spent a lot of time seeking out the best beaches we can get to with one of our party reliant on wheels.

My son loves nothing more than a stroll along a beach, and for us to park his all-terrain wheelchair right by the water’s edge so he can feel the force of the sea with all five of his senses. And so I’d also like to share with you a few of our favourites.

All of these beaches can be reached via a step-free slipway, or run flat from the road, but you will want an all-terrain wheelchair like a Delichon Delta, a Hippcampe, Mountain Trike or an Extreme 8, particularly to get through that infuriatingly soft sink sand that every beach has at the top.

Tip: if you have a smaller wheelchair user in your party (under the age of 10), you’ll get by just fine with a second-hand Mountain Buggy XL Terrain off eBay. Ours has seen us through seven years of coastal living, all for the grand price of £100. Just make sure you buy a first-generation one with a solid metal frame and a fixed front wheel, (the later ones are crap).

So, in no particular order…

Porthmeor Beach, St Ives

Porthmeor is a joy. Its grand sweep of pinky pearl soft sand and turquoise waters can be reached via slipways at either end, with a small car park or on-road parking for those with a Blue Badge just behind the beach.

Curved westerly along the crescent of St Ives Bay, and skirting around the modern grace of the Tate St Ives, Porthmeor has soft sand, safe surf (lifeguarded in summer) and an expanse of beach to explore. When you’re peckish, the incredible Porthmeor Beach Cafe (also wheelchair accessible) will fill you up.

But if you’re visiting on a day when the westerly wind is blowing, you’ll want to head instead to…

Porthminster Beach, St Ives

Yes St Ives gets a double mention in our top five. Maybe because it is blessed with so many glorious beaches, surrounded by fantastic places to eat, but also because it is St Ives where we were when we decided we definitely needed to move to Cornwall.

It is in St Ives where we saw both our children come alive. Free from the shackles and sensory assault of city living, quiet faces sprang joy, mild temperaments turned wild, and we all felt totally ourselves. At home.

It is on Porthminster where we have sat, chilled beer in hand, while our small (now larger) people have twizzled toes in the sand, paddled in clear waters and discovered who they are.

Porthminster doesn’t have its own accessible car park, but if you are in St Ives, and you are seeking respite from the ant-tunnel cobbled streets and seagull-patrol of the harbour front, head right here. A flat slip at the easterly end of the beach will take you straight onto the sand, alongside Porthminster Beach Cafe, where in the summer you will find a welcome beach bar.

There is also an incredible restaurant, which isn’t wheelchair accessible, but if you can lift up a couple of steps they’ll help you get in and find you a great table.

Mawgan Porth beach, north coast

I mean just look, right?

Mawgan Porth is north coast Cornwall at its best. Forboding cliff faces, white tipped lines rolling in from the ocean, and acres of hard, flat golden sand.

You’d never know it from photos but Mawgan Porth is accessible from a flat sand and shingle car park at the mouth of the bay.

With no dunes to climb or steep slipway to negotiate, Mawgan Porth is one of the easiest beaches to get onto with a wheelchair. You will find a basic but welcoming pub beach cafe by the car park that has a wheelchair accessible deck overlooking the beach.

If you have a Hippocampe and want to try it out in the waves, Mawgan Porth is a great (lifeguarded) beach to do it on.

Just watch out when the tide turns, when it starts to come in it races up the sand flats super quick, so be ready to hot wheel it back up the beach.

Pentewan Sands, south coast

If you’ve had a day out at the Eden Project or the Lost Gardens of Heligan (which are both super for wheelchair access and both have Changing Places toilets) and you fancy a bit of dinner on the beach, head to Pentewan where you will find a huge flat car park and a laid back beach shack branch of Hub Box.

There’s also a camping park at Pentewan, if you’re travelling with a motorhome or tent, or if static caravans with a sea view are your thing…

Seaton & Downderry beaches, south east Cornwall

Last but very much not least, is our home beach. The twin villages of Seaton and Downderry sit on Cornwall’s ‘Costas’, and on a scorching summer day you’d be forgiven for thinking you’re somewhere in the south of Spain or the west coast of Italy.

We aren’t blessed with the golden sands of the north coast down here, but we are sheltered from the blustering Atlantic winds and on a sunny winter day, you can sunbathe.

In Seaton you will find a large, flat accessible car park nestled between the beach and the (wheelchair accessible) Country Park, giving you the choice of following the winding wooded pathways through the valley or taking the shallow slipway down onto the sand. (Also watch this space for news to come about a Changing Places toilet in Seaton, I’m hopeful it will be the first beachside Changing Places loo in Cornwall).

Lifeguarded in the summer, Seaton has a beach wheelchair for hire that you can pick up from the Seaton Beach Cafe, and when the tide’s out you can roll all the way east to Downderry, about a mile of sand and shingle that is sheltered in the curve between Hannafore Point and Rame Head.

If you make it all the way up to Downderry, head up the slipway and back through the Memorial Gardens (one small step down – at least until the wheelchair ramp is put in later this year), and you’ll get to the Inn on the Shore, where you’ll find a wheelchair accessible deck with the best sea views and a good pint of Tribute to be had.

You will also find a cosy pub overlooking the park at Seaton, and the Beach House cafe/restaurant that overlooks the beach, as well as a sensory garden and a children’s playground.

And absolutely the best sunsets on Cornwall.

On a winter’s day, you can sit under cover at the Beach Cafe or inside the pub at Downderry and wave watch.

Or pop into mine for a cuppa.

Truthfully, we still haven’t even touched the sides of what Cornwall has to offer.

If you’re coming to Cornwall this year (come rain or shine!), this is also a handy list from Cornwall Mobility, where you will find all the places where you can hire a sand wheelchair, should you need one.

Here’s to many happy beach days ahead…

On your marks, get set…

Image by MonikaP from Pixabay 

When was the last time you relaxed? Really, truly, let it all hang out and drift away? Empty headed, loose limbed, unclasped. With nowhere else to be in body or in mind.

I had this conversation with myself last week and realised I couldn’t remember a time since the birth of our children when this has actually happened.

And yet, even with a pretty complicated household that requires a lot of heavy lifting and creative parenting, I couldn’t put my finger on why?

Why is it that when sleep comes, it brings with it a fistful of things I’ve forgotten to do and an anarchical narrative of chaos? When dreams are supposed to perform our back office mental filing, why are mine more of an apocalyptic helter skelter?

Why is it that even in the narrow windows of downtime, I always feel like I am waiting? That my attention cannot commit wholly to a task, a project, or even a book because at any second it is likely to be needed elsewhere.

I’m pretty sure that even in the pitch-dark sensory detachment of an isolation tank, I’d still have half an ear or an eye open and ready.

Stuck at the start line, expectant for a gun to fire that signals me into action. Sprinting to intercept a meltdown or ambush a silent choke on a mouthful of dinner. Picking up the perpetual baton of moving the day forward for children who can’t or maybe won’t do this for themselves. Seeing the hurdles of the SEND system as they come into focus on the horizon and conceiving of how to scale them, before a fall comes.

I am sure this feeling of being always on, always ready, is not at all unique to mothers and fathers of children who have disabilities or health conditions. Perhaps this is just what happens when you put a little piece of yourselves out into the world?

It’s just that, for us, maybe it’s heightened. The light switch is always turned to full, never dimmed even the slightest.

That meltdown isn’t a tantrum that can simply be ignored in the hope it will run out of oxygen, that phone call to book a brain scan or arrange a wheelchair handover isn’t one that can be sent to answer phone to be dealt with another day, that small sound in the darkness of the night might be nothing, or it might be a seizure.

The question of ‘what if’ is always looming overhead, its intensity pressed down on us by the knowledge that we are constantly under the gaze of armies of public sector workers that keep watch over our lives, circling around us in the name of support.

We know we don’t have to be perfect, but there is judgement, and reporting, and for that I know I don’t want to miss a single thing. We never know whether that circling will bring safety, like dolphins protecting their young, or threat, like vultures, sniffing and gliding in search of prey.

There is no off switch. There are very few moments when it is possible to unclip your spikes from the starting blocks and sit down on the warm grass to enjoy the view.

The only option as I see it right now is to buy a really comfy pair of spikes, and maybe some knee pads, and settle in for the long haul. Right there where we need to be, in the starting blocks. Ready to go when our children or the systems that support them need us to spring into action.

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?