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?

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