Trailblazing.

It's one thing to take a look at a personal situation and say 'No, I'm not going to accept that...'

It's quite another to finish the thought with '...and neither should anyone else.'

I ran a Google search this morning in search of a definition for the term 'trailblazer': a person who makes a new track through wild country.

Appropriately, when the trail you wish you blaze is a literal trail, you sign up for a 100 k race and train until you're ready to blaze. Me, I'm going to burn up some terrain in just under two weeks' time. Yes, of course I'm doing it for me, but it occurred to me the other day that I also want to do it for my Rukai. And to do that, I need to pass on some really important information.

(If you're still with me, thanks.)

Trailblazing. New tracks. Wild country.

How wild is the trail that navigates through the lost world of medical misinformation about possibility when it comes to disability? What if the trail about which I'm writing is one bordered in thorny opinion, cobbled with unforeseen pitfalls? What if it's always been unmarked and unnoticed?

What if one important day, someone said 'I'm not going to accept that' and began to map out that journey?

The result: Positive About Down Syndrome (PADS) - an online community written by families for families which has set out to draw back the curtain and expose the true wizard of Down syndrome - by sharing stories from that strange and amazing place called 'Lived Experience' which has eluded most professionals for decades merely by omission from the literature.

Leaflets full of facts and figures and symptoms and medical prognoses were thrust in my hands when Rukai was born. The folk wearing stethoscopes may have thought I was well equipped for the journey. But theory does not laugh. Statistics don't dance. Paper doesn't hug. Truth matters. The whole truth and nothing but...

I've no idea if I've written of this before but it matters here: I shudder to think what may have happened in our lives had I known before Rukai was born that he would have been born with Down syndrome, largely due to the total imbalance of the information available to me at the time. I live with that knowledge every day and it's wrapped a piece of my heart in those thorns. But I know that in retrospect, had I been given full and balanced information back in the day, if society weren't so pathetically misguided about the realities of life for someone with Ds, my personal picture would look dramatically different. That fear, nothing more than a blip on the radar. But it scarred. I simply don't want that to happen to anyone anymore.

I've written for years about my Rukai's possibility and have always tried so hard to not let the negativity in the ether bring us down. Nicola Enoch and that group of amazing PADS advocates have taken this to another level. Down that new track, through that wild country. Blazing, blazing.

What I wanted when Rukai was born is what I imagine what everyone would want at such a worrying time - someone to tell me it's not a disaster. Life is different, but life is fun. Life can be challenging but everyone's life is challenging. Life is life, and we are most certainly ALIVE.

I feel most alive when I'm blazing those forested and mountain trails.

PADS is blazing that other trail, giving life and hope and positivity to people just like us. People who should not be coerced into fearing the unknown.

But the website is only the tip of the iceberg and there is yet to be much more amazing work to come, so here's my ask:

Take a look at the website and read other lived experience from families who are also feeling Positive About Down Syndrome.

Check in with me on the weekend of July 13-14 when I'm running the Action Challenge Peak District 100k, when I'll be live streaming updates from the run when I have a signal, and sharing a few bits and bobs about exactly what else Nicola and everyone at PADS are achieving as they blaze this trail.

Consider making a small donation to their crowdfunding page (https://tinyurl.com/y4er87ja) so they can fund more projects like getting the language about Ds changed on websites like Bounty and the NCT, getting leaflets into hospitals so families like ours can go forth and blaze their own trails.

If you can't afford to donate, please share the website (http://www.positiveaboutdownsyndrome.co.uk/) or this post in full. Awareness is everything.

Burn baby burn.

Faster now.

How do I write when I can't think? The stuff I want to say is like that pile of crap underneath my bed as a kid, shunted there by a flurry of hands when Mom told me to clean up, retrieved later by a hockey stick when I was found out. I hadn't the patience and the ordered thought to clear it at the onset, how the hell could I do it now?

That elephant has taken too many bites to eat. I am full. I have indigestion. I fucking hate elephant.

I have used an analogy to describe what it has felt like of late to be at work, there in the midst of this life which surrounds that work, and that is where I will start and perhaps pause again. Because in all desperation, you have to start somewhere. Every journey starts with a single step, every story with a word. Every finish with exhaustion. If you are not exhausted you have not done enough.

But my good God I'm tired of this story. There I said it.

Imagine you are an expert skier, positioned atop the highest, most technical mountain going. Perfect clear weather, great snow conditions, you strap on your left ski and smirk at the prospects of attacking the latest challenge set before you. Crouched down, you position your foot into the right ski and just as you begin to secure it, a boot at your back sends you hurtling down the mountain.

You are flailing and slightly panicked, but the snow is in front, the boot is behind and you are only trying to not crash and burn. Your goal is to survive.

That is all.

Still, you are an expert skier. You know how to attack this hill. Even when the hill is attacking you. Crouch. Steer. Focus.

Conditions have become less than ideal and you are careening and flailing and panicking but lo and behold, you keep skiing.

You keep skiing. You keep skiing so long you start to hate skiing.

Somewhere in the middle of the hill, you hit a dodgy edge and fly head over heels, skis launched into oblivion despite how secure or insecure they really are, and you crash into that orange plastic net fence so hard it leaves a bruise with a fair bit of depth. As you creak to vertical, observers applaud that you are, in fact, not dead, which doesn't matter a bit when you drop your head so far below your shoulders you obliterate those delicate muscles in the neck that allow you to hold it high.

It will be days before you can. Months? Years?

Not soon.

You skulk down, down, down. To the base of the hill. Dragging the skis and your courage behind you.

And then you look up. Beyond the fence, up.

Past the crashing place, up.

Beyond the clouds, up.

Because the beginning of the bad run is not visible to the eye, it is fogged in and buried in mist and roiling and blowing and you won't see the same again until the next time you fall.

Because you will fall.

But.

You massage your bruise. Your bruised ego. Your bruised psyche. As purple fades, resilience falters.

But.

Relentlessness does not die. Faith is genetic, impenetrable.

The echo in your head is part crowd, part disappointment, part mind egging you on to try again.

Mind wins. You go back up.

Faster now.

The mountain is high. You go back up.
Faster now.
The conditions are variable. You go back up.
Faster now.
The ski is never secured properly.

Still, you go back up.

Faster now.

You go. Because that is what you do.

The child for whom I was so afraid.

If you are the new parent of a child with Down's syndrome and are worried about how he or she will be accepted in this life, I want to tell you a little story... My son Rukai is now 7 and in year 2 of a mainstream primary school. He's non-verbal and has his challenges but is mighty capable with Makaton. So is his TA. The school is generous with inclusivity and encourages all the children to learn at least a few signs. They sign every year in the Nativity. They celebrate World Down Syndrome Day. We are lucky we found them and ever so grateful for the advocates and activists who've paved the way for society to get this far. Every little helps and you have all been warriors of a different class to fight your way through the mire. Each Wednesday morning is reading morning at the school. Fortunately I work from home so rarely miss it. Rukai lost interest in books once his mobility improved enough to allow him to dance and has only recently has decided that he loves Dr. Seuss' Green Eggs and Ham, so that's become a nightly treat to my great delight. It's more theatrics than reading but we are working very hard on pronunciation and have a whale of a time together. Progress is slow but progress is progress.

A few weeks ago Rukai's TA was telling me how the children have been enjoying sitting with him to read a story called The Old Tree Stump. It's a Biff, Chip and Kipper book (common here in the UK, if you're unfamiliar), and full of many sign-able words, so a real winner of a story. Sure enough about a month ago one of the little girls who reads with him during the school day brought out the book and told me again how much he likes it. Next thing I knew there were about 4 others who took a seat and joined us. Laughing away, signing with glee, loving the story and time with my son. That child for whom I was so afraid, just like you may be feeling right now. Today the crowd around Rukai - totally engaged and gleefully signing its way through that book - had to have grown to at least 10. It was standing room only around the desk. There were even a few boys this morning. It was something I thought I'd never see those seven years ago. Sure, life has since hinted that this is the true way forward, but a cold hospital room on a blustery February morning, staring down an unknown journey are most certainly the bogeyman. And we know the bogeyman is not real. But what is? Hope is real. Progress is real. Friendship is real. Curiosity is real. Children are malleable and the future is real. Don't be afraid of the world, help the world lose its fear. Go be amazing. Your child will be amazing, this is all I know for sure. There is no crystal ball, there is just you and them and one single day at a time. As I looked up at all those kids this morning I laughed and smiled 'this is a reading party today!' and the response I got back from one of the children rang so loudly and beautifully in my ears: 'Rukai has a lot of friends!' Yes. Yes he does. Life.

The height of the mountain we climb.

Long day’s work done, I step into the tube station.

Tall guy with a crutch and an uneven gait passes through the disabled ticket machine. I notice because I always notice now, then keep going to board the train.

Up ahead a woman in a white top is stood up next to her seat, swaying slightly, muttering to herself. She’s grasped the bottom hem of her top with the tips of her fingers. I walk by with a glance and move forward.

I always notice now.

Guy with the crutch boards shortly thereafter. He’s tall, wearing glasses, I can see that one of his eyes is focusing entirely to the side. None of this is terrifically important or memorable until he stops immediately in front of me and starts shouting back down the carriage. I can’t hear what he’s saying over my headphones, so press mute.

“…you can’t expose yourself here! There are children here! What the hell…”

I look back in the direction from which I came and the woman who’d been muttering has pulled off her top and is now stood in her bra and skirt. She slowly tugs another top on and resumes the zoned out swaying. I don’t think she’s all present but this is London, this is not all that uncommon. I don’t pay much notice but the man in front of me is now gawping at her, and starts muttering aloud until I hear “…ah now I feel bad for her…” and off he goes to grab the attention of a train employee.

She’s still swaying.

Employee steps on the train, as the woman now turns away and saunters down the carriage in the opposite direction, leaving her bag on the seat.

Alarms ringing in my head now, you don’t do that shit on a tube these days. Should I stay or should I go. I sit frozen for a minute and decide I don’t believe she’s dangerous but also that I don’t want to be close enough to wake up in a hospital knowing how wrong I was. I move down the train and sit behind a few barriers…you know, in case something explodes.

This is London. I hate living with that background fear.

Back to the man who alerted the staff member – now he comes by and starts talking to me about how he’s never seen anything like that on a train.

“I’m gonna have a seat…”

“I’ve never seen anything like it either,” says I.

Dude’s now talking about how unfair it is that society lets people suffer with mental issues, and he glances over “…she’s clearly got something wrong,” he says. “Why don’t they fix problems like that? If there’s something wrong with someone’s brain, why don’t they scan the brain, find what is wrong and fix the problem…”

He’s going on and I’m liking the conversation. The injustice for atypical people is apparent every day for me now and it’s surprisingly pleasant to engage in a conversation about it with a total stranger. My thinking is different, my situation is different. I care for someone who will forever suffer from injustice. I like this guy. I’m very much in the moment until out of his mouth comes:

“…why don’t they just fix it instead of letting them just mong out...”

…
…

(I hear nothing but red noise in my head. It may well have been an explosion because there was nothing but red noise in my head.)

This guy is disabled.

This guy will have been the focus of those dreadful disdainful attitudes, thrown away, uncared for at a glance of that crutch, those glasses. I would imagine that probably on this very day he’s been treated badly by someone and there and then out he comes with…

“…letting them just mong out…”

Has he forgotten his own situation? Does shit roll that far downhill that there is nothing left to do but roll it further? Find an underdog society views even more…under? No. Not today, man. No.

This man dug up that word and I stopped listening. That disabled man is no ally of my son. That man threw my son under the broken bus. I probably should have called him on it but it was late. I was on the train. And I was in total shock.



I expect this attitude from the uneducated bulk of society in general but to hear it from someone who I try to fight for every. stupid. day…

I don’t know what to feel but rage, nor what to see but the height of the mountain we climb. It’s fucking huge.

This is what we are up against.

These two are not the same. | World Down Syndrome Day 2019

Mismatched socks are ok. 

Total inclusion is better.

Lack of a battle to help your child live his best life, lack of societal disregard to a person's humanity.

Medical professionals ceasing to say things like "I'm sorry" and writing things like "Problems: Down's syndrome" at the top of every report.

I have a son. I have a problem. These two are not the same.

Today is World Down Syndrome Day for everyone. In our house it's every day.

Socks are fine but they don't stop science trying to eradicate my son's community. They don't prevent people from making foolish assumptions and slapping on labels. Head tilts and low expectations. Only real life knowledge does that.

Socks are great.

My son is greater.

The world can be as aware of Down syndrome as it likes. But it is high time the world stops trying to eradicate it and pays more attention to welcoming people to life. To learning what the realities in that life are.

Our life can be difficult. But it really has little to do with Down syndrome.

Today I celebrate my son. I advocate for my son. I try to educate people about my son. But I do that every day.

Today is for all of you to do the same.

Happy World Down Syndrome Day.

#wdsd2019 #Team21 #downsyndrome