DNF: education edition.

I will start with this: mainstream education has failed us.

That grand experiment in inclusivity is indeed little more than scientific hypothesis, suggesting that if we mix the two worlds together, each shall benefit from the other. But sometimes the scales tip deeply in the wrong direction. Sometimes mainstream benefits, yet it is the child actually fanning the flames of understanding who gets left behind.

Not for much longer. It's time to go.

Our mainstream primary school has been the most caring, beautiful place on earth for nurturing an inclusive approach. My son, this disabled child who learns more slowly, whose behaviours go well against the grain and whose words are currently best spoken with two palms and ten fingers - this child is no longer learning anything at school.

How hard is that to comprehend, let alone type?

It is important for you reading this to understand that this is not his failure. 

Read that again, I'll wait.

This failure to deliver an effective mainstream education to my son is down to systems which don't fund the appropriate support, the right training, the correct staff, to mingle in with the mainstream - without teachers and LSAs frantically doggy paddling to stay afloat and absorb specialist techniques and knowledge on the fly. That's not to say they didn't throw everything they had at it to support him. My heavens, did they. My heart is so full and I will love them all completely, until my last breath.

But this remains a desperately flawed system which tries to jam square pegs into round holes, all with one eye shut, to force fit everyone into a single, inflexible, one-size-fits-all curriculum. It's tragic on every level, really.

It is down to a society infected with ableist beliefs, one which places far too much emphasis on pace and power and money and barely any on empathy and compassion and patience.

This is not his failure. WE are the disappointed party.

The fact remains that we are ecstatic for the opportunity to enter a world of education which actually sees him properly. One which understands where he has come from and where he will go, and at what pace he'll get there. His. Not some generic book of standard pace, but HIS.

We're about to join the costlier of the educative roads. That which people love to call 'special' and mock and pity and feel shame towards, and I would beg to differ but I don't beg. 

It's not special. It's appropriate.

(Best read that twice, too.)

Once again, I sit in stunned silence wondering how we are so fortunate to have been told at such pace, 'yes, we agree he needs more structured and tailored education, so here - there's a place for you at a specialist school...

'THIS autumn term.'

We're visiting a potential school on Monday. The proposed start date is not yet confirmed but fits into 'this autumn term'. Guess what folks, it's autumn and we're four school days away from half term.

This pace is so blisteringly unfamiliar I cannot stop crying from the anxiety of it all. Because, quite simply, we don't do fast here. Ever. With regard to anything.

Still, the delight which I find in not having to draw a sword and go to battle, in being heard, in the fact that my son is being SEEN. Quite probably a few years too late, but our previous attempt at progress was mashed to a pulp in March 2020 just like everything else.

Pace now, is welcome - albeit terrifying.

The lack of control over such an important situation is not only awful but it requires me to free my caged and ravaged heart and dole out great swodges of trust to absolute strangers. This is something I don't do well. I've only ever done it during those epic long trail races, with likeminded people looking after me, seeing me on through the dark night, their own beacon of light joining mine to help guide the way.

Ah and there we have that Venn. Two lights shine brighter than one. Trust is earned but sometimes trust must be gulped down and inhaled and you take that backwards fall or that leap over the edge, expecting the cushion, expecting the arms, expecting the destination to comfort and caress and buy you a coffee or a pint, depending on the time of day.

But really - how do you like that? Another DNF. We made it to year 5, just. Time to put it down. On our terms. Feels familiar.

That mainstream journey hasn't worked out because of those very harsh and scratchy words 'severe learning disability' - only harsh and scratchy because, truth be told, like everyone else I was an ableist dick in my life before Rukai. And he's nearly 10 and I'm still working on it - working hard.

How that shreds my heart. He's my SON for fuck's sake.

But my God in the great beyond, I feel exactly like I did on hearing his diagnosis. But why? This is not his failure. This is not a failure at all. We've decided to move on because they no longer know how to teach him anything. 

Fact.

This. Is. Not. His. Failure. That repetition more for me than you, but do register it. I'm livid that I'm so stressed out about this. It's a lonely old life, mine.

And the pace, that blistering pace, here we'll guide you, go here, do this, go there, see them...

I cannot trust anyone enough to feel comfortable with this. But I know that mainstream has failed to deliver and this is what my son needs.

Special school? No, and that's the rub.

SPECIALIST provision.

See the difference? Words matter so much. That ableism boils beneath most people's skin. It's woven into our sinew. It's not the potential new school and it's students which are special. The people who do the educating and their techniques are beyond the ordinary levels of expertise. What is a specialist after all? A subject matter expert.

Huge knowledge. The right kind of expert.

And I'll wait for you to digest that, too.

I detest my historic thinking, and see it on the faces of those parents during the school run I will probably delight in abandoning, looking at us with a head tilt and an awww, or with abject horror as if we are foaming at the mouth, encased in a neon green fog with horns growing out our heads. Climbing up our heels as we shuffle towards the gate, impatient, churning, palpable frustration just oozing off so many of the folks behind us.

Of these all, so few come up and say good morning. The ones who do truly rock our world. The child having a lovely chat with Rukai - in Makaton - yesterday was enough for me to cling to, for what will soon be forever.

Ah yes and there are them tears. Rolling in the deep, still a fire starting in my heart. I'll need a bit of salt later - been some few days around here, what with all this emotion.

But alas, we were part of that world once. For five and a bit years, we were there. We did not finish - they couldn't do enough for him.

This is not his failure. 

It's time to go - so we're going.

Remember him.
Remember what you learned.
Remember what he taught you.
Remember how he shines.

Remember him.

Bacon and age.

(Originally posted on Realbuzz community)

My head, when writing about running, has been as blank as the race calendar I'd planned in 2020. What an odd place to be, where I've done more mileage, more training, than I'd ever done in my life, for no reason other than to not wither up and die of boredom? Some 1200 miles on the Strava clock last year, and the start of this one containing over 600 miles and 60,000 feet of elevation already. The only way is up, indeed.

But dear God, tell me I'll use it. I'm seeing the sparkle of an imminent race, but like that magic trick that goes wrong where they pull the carpet away and the tower comes tumbling down, this time, this madness, jumps up and nips us in the achilles right as we're readying for the starting gun. I am expecting the worst. Tell me I'm wrong. Just do it.

That joy of digging out the box of race shit! The hustle and bustle of a registration tent, teeming with adrenaline, big dreams and lurking nightmares. Broken personal records, and racks soon to sink under the weight of new bling. 

It all went the way of the dodo didn't it? Please let it not anymore. Please. 

Please.

Good lord, what a long and arduous year, that 2020.

I bid it farewell with a load of training on my legs and an elevation challenge taking the place of the regular December Marcothon. Unfortunately what I'm calling 'not-Covid' struck me down for a month (I think it was but the test/s didn't, so there ya go) and after a stint in A&E and some emergency tablets to get asthma under control in December, I re-commenced the training plan in January. 

Now this has gone the greatest of guns up until a couple weeks ago when ye olde peroneal seems to have contributed to a new foot injury after I found some glorious new hills in Epping Forest to call a playground. Sure, maybe it's not clever to go belting up and down 18-20 miles of hills more than once a week but I've now morphed into something of an an ultrarunner so this has become the new normal.

The only part of the new normal I like, mind, yet still, running long is the blood and breath that keeps me vertical. While all of life is falling down like a toppled tower of cards, mine is in a tumble dryer and I'm spinning, spinning, trying hard to rescue that mad sock before it disappears into wherever those mad socks go. Without these miles, my mind would have broken long ago.

Now. 2021.

I'll start with 'at present, my shortest race is 50 miles'. 

That's mental. I really must book in a few shorties, but that's where I'm at. My time has suddenly become severely limited and when time is limited I go long and long and long.

But in that 2021 is a continuation of what didn't manage to happen in 2020, that's where we make up the lost races.

This is also the year I turn 50.

Good lord. Did I just write that?

Of course, this, being me, means I have to now go out and do some mental things because that is what I do to feel alive nowadays.

This also being me means I'm doing it for a cause, and this would be for the most important other human in my world and that is my gorgeous boy Rukai. So I'll be waving the fifty flag to raise awareness of the new All-Party Parliamentary Group for Down Syndrome and raising a few bob here and there for the Down Syndrome Policy Group, which consists of grassroots campaigners representing those agencies who are doing all the legwork to ensure policy is in place to support people like my son into adulthood. 

Because you see, his journey to 50 should not be fraught with exclusion and poor health care. It shouldn't be met with societal disregard and inequality. The DSPG will go the extra mile to make it happen and so will I.

I thought I'd get a bit creative in naming the challenges I'm going after, because - me. So herein lies the plan:

1. The Hills Are A Lie

With a chapeau to Instagram's Ultra Running Memes and the known known that 'vert's not real', I am attempting my second ever 100k in Ultra Challenge's Lake District Challenge on the weekend of 12-13 June. I keep reminding myself that 100k is 62 miles in new money, because 62 is smaller than 100 and I don't think so much that I will die. In the midst of the 'Great Big Lockdown Running Spree of 2020' I did go out and undertake an unsupported 50 miler I lovingly named 'Sadistic Saturday' so I'm one longo closer to that 62. But still. First and last one was in July 2019, which feels like a hundred years ago. See? No escaping that hundred. Bloody three digit number.

My gauntlet going down now: goals are gold: sub 18, silver sub 20, bronze, finish in the face of some random catastrophe. 8600 feet of elevation in the books. Bring. It. On. (FWIW, my 100k PB is 22 hours and change. I thought I was dead but I didn't die. And Em was there! Magic.)

Oh and I'm camping. Ha! That's another thing I've only done once in my life. Because you only live through the year you turn 50 once so why not make everything you do totally unfamiliar and uncomfortable?! Why not, indeed.

2. Good Things Come to Those Who Wait

Not only because I like Guinness, but this really is a good thing that I've waited for. And waited, and waited and...well, you get the idea. The Shropshire Way 80k was meant to happen last year in April. Then it was happening last year in September. Now it is happening on August 14-15 (are you sensing a trend with the two day thing, here?) I expect to be reunited with a Buzzer or two on that weekend which is why I haven't postponed as a 50 mile / 8200 feet event two weeks before 'TheBigOne' is not as totally insane as it sounds. (Ok, it is, but Sir Bolty said he thought I could do it, so I'm doing it.)

3. Operation 86

Provided I don't die in the Shropshire Hills, I will toe the line for the longest.event.of.my.life. the Ridgeway 86, on Bank Holiday weekend, 28-29 August. This was meant to be the be all, end all event of last year, and has a special double meaning.

In the US, 'to 86' something is to get rid of it. What my intention is/was for this race is to get rid of my own fear of going such a massive distance, but to also encourage other people to get rid of their own fears and undertake an activity they're afraid of to challenge themselves. 

The other intention is/was to raise awareness of the fears people have around Down Syndrome, the condition my son has, and to offer public conversation with honest answers about real lived experience so that people don't go through their lives perpetuating myths and stereotypes. I have been surprised for the past 9 years at how easily those have been proven wrong in my own life and I want to help others see how much potential kids like my son have. To give them a chance. To 86 their own fears. 

I expect that finish line will be grinning and teasing me. I don't know if my legs will have the right stuff on the day but I'll deliver what I always deliver. And if I don't get to the finish line in the cutoff, I'll get to the finish line outside the cutoff. Provided there aren't any bones sticking out of my leg. You know, as per.

Now it must be noted that I'm debating pushing the envelope and trying to stagger to 100 miles (you know, once again if I'm not dead at this point), but I'd need a 14 mile route and some crew. All goers welcome if you think I'm nuts and strong enough to pull it off! Failing that, the final challenge of the year is the Great Big Birthday Run and I'm calling it...

4. Bacon and Age.

This is the Joker of the diary and it is most certainly wild and will most certainly be a bit of a pig for reasons of duration. Wild in that I've no real idea of what it's going to look like yet, aside from I'm going to start running at 6:58 pm on October 27th and conclude running at 6:58 pm on October 28th, which is the precise moment I was born and so turn the calendar over to officially old geeze. Why not run in the new decade?

I'm not sure where I'll go, other than I want to do some varied loops in a beautiful place in the UK, going back to the same start point in between so I have a base camp and lots of food. Hopefully some bacon as that is the nectar of life (aside from Guinness). If I don't swing the 100 mile thing in August I may try in October. Or I may say hell with it and run a mile an hour. Jury's out. All I know is when I leave this decade and enter the next, it's going to be at pace. Because, me.

After all, relentless forward progress is the name of the game. 

In between all this, it must be said that my actual personal life is in a huge amount of chaos but it is because of all this that I know I will come out a winner there, too. I will reach the finish line, because that is what I do. Stopping just gets you stiff and cold and short of your destination.

To all you Buzzers old and new (but not the CBD spammers, you can collectively go do one) I wish you miles and miles of joyous running. May we all meet again soon enough.

There's nothing like a Buzzer hug and my well's run dry.

Go forth and...

Because, WE.

There is a threshold at which every human being is tipped over the edge. The edge of patience. Of reason. Of tolerance. Of sanity.

It is safe to say I don't believe I know anyone who isn't currently teetering in some way. Sure people may be pressing back their shoulders, loudly announcing to the world that it's all in hand, I'm good, I got this, I'm still here, I'm still going, but naw, it's cutting deep and we are all wounded. I can see you bleed.

I can't tell you it will all be ok, but -

I embrace you from a (safe, social) distance.

I pass you a sanitised box of tissues to wipe away that dismay careening down your face. It'll stain if you don't wipe it off.

Trust me.

Where are we? Good lord, where on earth.

We are living through what has been a monumental catastrophe for so many but that which is utterly disregarded by their opposites.

This taker of loved ones, this culler of humanity, morbidly viewed as little more than an unnecessary inconvenience, a cancelled holiday, a missed opportunity to go out clubbing, drowning in why can't I watch my football team live? It's. So. Unfair. Why?

Because, WE.

WE.

That we are all in this together is not in doubt. The question is, who is going to smother those at the bottom in their efforts to climb out first? Who will launch themselves ahead, smearing mud across forgotten faces? Who will forget to drop a rope? Who will cry exhaustion when it is their turn to pull?

Because, WE.

I am bemused, to be fair, having had the luxury of years of experience within the Great Big Pity Party, blessed with my son, who is so much the same as his peers, yet always, always, quite markedly different. As a mother, you certainly don't want your life to be so different. But mine is. Hand on heart, some days that absolutely destroys me. Then I pull my head out of my ass and remember I chose to be a mother and my son is the best person I know. I remember that most days I'd take ten of him.

Still, some days I just CAN'T.

How many days spent feeling sorry for myself that my world is not like that of other people, that I have to spend so much time teaching my only child those skills other children just fall into, that I have to decipher, translate, interpret, all manner of body language, attitude, emotional adjustment, as a means of communicating in the absence of the spoken word?

But that is my job. I am his mother. He deserves every minute of my time. 

How many years have I avoided writing some of the feelings for fear of the 'I told you so' posse? 

Here's the rub: I don't give a shit anymore. You can't bring everyone on side. If any time in history has proven that, it is this time.

I pound the pavement and chew up the trails, questioning it all.

I smile, like the great Eliud in grief and pain. 

I grin. I bear it.

I cannot claim it is always easy. 

I CAN claim I love my son with a fervor you would never understand if you hadn't had a love like it. And nobody 'told me so' about that.

Still...

How very normal is this lack of normal? Ridiculously.

We haven't got out as much as other families, not ever. Because, just like celebrity, there is sometimes too much attention and you never know if it will be uplifting or a(nother) stake in the heart. I find myself endlessly more fragile than my toughened exterior may hint at, splintering so easily when someone shocks me out of my idealist positive approach with the reality check that most people think my life is probably less than. Just like they think that of my son. I'm not a fool, I know this.

You reading this, you too may think this. You're allowed. It's ok. Some days I may agree with you. Other days I'd slam the door in your face and curse at you til you were out of sight. 

All about balance, in all things.

A blessing of this pandemic? Odd, but yes, there have been a few. The big one is the lack of encounters has all but eliminated the bad kind of attention. The only people in our lives the past year have been those who love us.

Isn't that bloody marvellous?

Still for us, this new normal is not new at all. This new normal only brings with it the crisis of contagion. 

We are a DS family. We are a SEN family. 

My son is disabled. I couldn't say that for years because I thought it was a dirty word, something to fear. 

I'm not afraid of my son, nor should anyone be. Disability is not disaster. 

What IS a disaster, is that this new normal - in the middle of a pandemic - feels so utterly, totally normal to us. It feels normal to us when everyone else on God's green earth is losing their shit because their world is so far off piste and it feels like it will never right itself. 

My son has been othered for all time. We are isolated, we are separated, this is nothing new. Our world is myopic. Here, pop these lenses on. Welcome to the disability disco.

Isolation so ordinary but what IS new, if not this 'normal'?

What IS new, is the pace in which my ridiculous overabundance of patience is waning.

What IS new, is the fact that everyone, everywhere suddenly understands what our normal looks like. My God, I wish it would stick! I wish they would all FEEL it! Process it! 

Remember it, when you are back in the club, the stadium, the playground with slides that only have steps made of rope. 

And we are here wondering if we will be accosted by disdain on our next trip to Tescos.

Isolation is a reality for families like ours, for kids like mine.

I genuinely can't tell if I feel sorry for everyone on the entire planet who is suddenly feeling so isolated, or if it is actually quite liberating. It may be met with great curiosity as to how I can stay so perennially positive and optimistic during this hideous and difficult time. 

And here, I'll tell you - it's because I learned just about nine years ago that there is no other way you can survive when the world will forever push you aside. Chin up, eyes on the prize. Keep moving. Relentless forward progress.

Today,

In your dismay and your horror,

In your darkened outlook and your fear,

In your desperate hope that one day soon this isolation will end,

I wish that your every dream comes true.

I know others - just like me - will too.

Because, WE.