Friday, 30 October 2015

26.2 for the DSA and my Ru.

#RunningForRukai: Road to the 2016 London Marathon for the DSA 

In April 2016, I'm going to attempt to do something I never dreamed possible for someONE I never dreamed possible - toe the line of the London Marathon and conquer those 26.2 miles in support of the Down's Syndrome Association and my gorgeous son Rukai, who has Ds. Rukai is a boisterous, energetic, engaging and very typical (yes, you read that right: typical!) little boy whose smile could light up Wembley. I wish everyone on earth could spend ten minutes with him, because the world would be better off for it.

Growing up, I never thought I'd need to call on a charity in my lifetime. Today, my gratitude is boundless. The DSA has supported Rukai and our family since day dot. They will continue to support Rukai long after we are gone so I am more than happy to support the DSA while I am able, and I'd be so grateful if you would too. And here, I'll tell you why...

Our little family had a ridiculously negative start. When Rukai was born, we were met with pity instead of congratulations. Whispers instead of smiles. The first interaction with a pediatrician after he was born was a registrar frowning as she said "you know why I'm here..." The clinic where I'd seen a specialist midwife for months was just down the hall, and it was a clinic day so she was probably there. But no one thought to ask her to come, someone I knew and trusted. Instead, we were surrounded by strangers with frowns. No congratulations, no he's beautiful, only "you know why I'm here..."

When Rukai's confirmed diagnosis was delivered a couple days later, I had been lying in the hospital bed holding him when a doctor and four other people (two whom I'd never seen before) paraded into my room, stopped in front of the bed and looked down at us. The doctor failed to notice Rukai's Dad wasn't present and began to speak. I had to stop him after he'd already revealed the news and asked my mother to go out and find my husband. We were later given worse case scenarios about what Rukai 'will need'. Four years on, few of those purported necessities have materialized. This place in which we live is most certainly not THAT place. And what Rukai really needs is love, education, friendship and a happy life, just like any other kid. The rest is periphery.

Sadly, the Down's Syndrome Association has heard dozens upon dozens of these kinds of stories and have cleverly developed a programme called "Tell it right, start it right" to help midwives and other medical people understand the nuances of delivering a diagnosis in a supportive, realistic and positive way, not with outdated facts, labeling, and an overabundance of pity. Now that Rukai is nearly 4, we know the reality of raising a child with Down's syndrome, and let me tell you - it is absolutely nothing like the doom and gloom we were led to believe! Rukai is just Rukai. He is not Down's syndrome.

I desperately don't want anyone else to have such a negative start. Please help me make sure they don't. Whether you can afford £2 or £20, every penny helps the DSA deliver this and a host of other programmes which support people with Ds, their families and all the professionals who provide support to us all day in and day out.

In the meantime, I will leave you with this thought...

The London Marathon is full of wacky costumed fun runners, most of whom are probably faster than me, even in costume. So I expect I may get passed up by a banana, a phone box, a leprechaun and a pair of testicles but as I live and breathe, I'm going to cross that line in April. For the DSA, for Rukai and for everyone who benefits from this amazing charity.

Now it's time to hit the bricks. I got this.

Please support the DSA here:

Blogging about this marathon journey here:

Wednesday, 21 October 2015

Build it up.

[This post comes from a place of deep anger with a system I find completely broken. If cursing offends you, best avoid. Just a caveat -  in no way an apology.] 

I think those Tickboxes could very well appear in the next Avengers movie. They're like otherworldly antagonists, the pen wielded over them by maybe a doctor, 'Education', hell, maybe an ice cream vendor for all I know, but they are always present.  They're like the freckles on my face, present.  Like the freckles in winter, the boxes fade when we are left to our own devices, they take to the background, we don't think of them until we are placed before them. Like those judges on the Voice, those cowardly fuckers never turn around to square off.

Because we'd win.

And there they loom over us on the scribble pad of a person who is supposed to help us. They live, they breathe, they tear us down. They always fucking tear us down. Every time we lift ourselves up, those Tickboxes tear us down.

What an unkind life. A life trying to be so proud, so bold, so brave. I cannot hold the world on my back indefinitely. If I had my running shoes on right now, I'd do a Forrest Gump and run till my hair grew to my ankles and my skin turned the color of molasses.

There is nothing that will kick you in the face as hard as a doctor stating matter-of-factly that your going-on-four-year-old is developmentally 12 months old in some areas and 15 in others. I never asked her for this number, this neat packaging, same as my Dad, when dying of cancer never asked for that countdown til his last day. And lo and behold his countdown came true. Self fulfilling prophecy and all that. He even stopped turning the calendar pages. Why bother?

Dangerous stuff, those Tickboxes. Those Timings.

As I live and breathe I now know my purpose in this life and that is to refuse to allow The Tickbox and all this tallying and boxing up and ranking and rating and counting to dictate what my son will and will not achieve in his life. Til my dying day I will focus on nothing less. Tear us down and we'll build ourselves back up. You watch. You watch. You just flat out fucking watch.

New house, build it up
Who's gonna help me build it up
Bring me a hammer, build it up
Bring me a saw, build it up
Next thing you bring me
Is a building machine
Build it up. Build it up.

So doctor and The Tickbox kick you in the face with that godawful number you never asked for and though you entirely agree there is global delay, the actual quantifying of said delay is irrelevant because in reality, you go on with your day, every day, without the input of The Tickbox. Some Great Chart, like part of the Permanent Record we are threatened with from childhood, The Tickbox has invited itself in, gone to the fridge, cracked open a beer and planted its feet under our table.

I'm planting some choking vines around those feet, mate. Careful when you try to stand cos you're going to fall flat on that smarmy grin.

There is nothing else in our lives so bold and so irretrievably inappropriate than The Tickbox.
So damaging, so false a measurement of Truth.
So upsetting. Ugly crying upsetting. Beyond Ugly.

I get the your-kid-is-still-an-infant smack and subsequently ask what about his very advanced social skills? His curiosity and engagement with life and the world around him?
'Oh that doesn't matter as much', says she.
My head about fell off.

'To us as his parents it sure does', says I.

But apparently 'They' (this particular 'They' being 'Education') don't really give two blue squirrelly fucks about how capable someone is at engaging with the world around him if he can't hold a spoon. Who knew?

Shut my mouth and call me a Sherman Tank, I hadn't a clue.

'Isn't an essential part of life being able to socialize and be involved with other people?' says I.
And the answer came again: They don't care. Those Who Design The Lists Of Tickboxes don't care.

I think we are seriously living in the Matrix. I'm afraid to eat a steak lest it taste like a shoe insole now. Shame there really is no spoon cos I'd scoop up a motherload of bullshit with it right about now and fling it all over The Tickboxes.

And then we leave in the pissing rain. Even the sky was crying.

Always those who are most supposed to be helping us bring out those Ugly Tears. Not the stranger in the shop saying something stupid, not the worry about some well meaning mom at the park asking 'what's wrong with him' (never happened but it's my biggest fear) no no, those things don't actually rock our world. It's those who are supposed to help us who draw out the Ugly Tears.

How wrong is that. Just. How. Wrong.

That said, as my skin toughens along this journey when I get that roundhouse to the jaw it now first makes me sad. Don't get me wrong, it still fucks me off considerably but that is a wasted emotion because we have a life to live despite all the roadblocks. (Funny my typo fingers just spelled out roadbollocks).

The big problem I have is this. The system is setting him up to fail. Based upon this latest throttling it's occurred to me that they may not realize this but they sure are, sunny Jim.

Rukai is meant to begin formal education during the term after his fourth birthday. We have already felt a pressure to adhere to this timing. Being a February baby, this means he's supposed to start next September. Going to school with other four year olds, maybe a five or two, most of whom will already run, jump, count to ten, tally off the alphabet.

Use a toilet.
Feed themselves.
Use a cup.


Wash their hands on their own.
The list goes on.

We're working on walking. Yes, Rukai is delayed. We don't need a number with which you perennially infantilize our kid to remind us that he's delayed. But now I'm awfully goddamn curious...what exactly do you tell a 45 year old with cerebral palsy when they physically can't walk? That they are walking at a 5 month old level? Or do you only infantilize people with disabilities when it comes to intellectual parameters?

That flat out fucks me off again. And here I thought I'd stopped being fucked off for the day. No, no. Hells no.

The Tickboxes.
The System.

Whose Box is it Anyway?

So Rukai will go to school and because he has a learning disability with a name it will be more straightforward to provide him help in terms of one to one support. Today I'm told it is because that developmental age is half of his chronological age. Help. One to one support. But wait, you're thinking...that sounds good. So what's the problem?

Throw away the reference to his advanced social skills, write up that report talking about a 12 to 15 month old and Rukai is henceforth sat at a desk in the corner working on spoon holding while his 'age peers' are moving further and further away from him. The risk of someone focusing on his struggle instead of drawing out what he excels at is too high. Those words on paper too heavy.

Treading water. Options...

Though not impossible, it's a gargantuan challenge to get a school to agree to a delayed entry. We have been waffling about it and after today I am once again thrown in a tailspin. But is this one person's forced negativity we are dealing with or is The System married to The Tickbox and procreating like hutched rabbits?

This fear, this panic, this is like disease. This is like the bad Gremlins. It's no bloody wonder I run.

So what then? We start him at five, yes, ideal. One more year to develop, to catch up. Super! Let's go!
Ok, so if they agree, wait...
Then in most cases he would have to skip the next year and go in with his age group peers. I don't know the ins and outs but it's something that sounds about like 'computer says no'.
Stay with age peers and he's instantly behind again.
Delay wins, regardless.

Ok, so back to starting him at four.  With the physical ability level of a one year old.  Great.  Cracking idea!!  Then the council has to provide enough support to keep him ticking along until which time he will inevitably fall behind his peers and they will inevitably recommend holding him back a year. Back to the group we thought he should start with from the beginning. Do you see this catch 22?  I cannot understand the reasoning because all it looks like is: 'make the parents not want to bother with all the hassle to go mainstream and settle for putting the child in a special school'. Yes, the alternative is a special school from the get go.

No. No. No Fuckity No. That is not inclusion. The system is offering inclusion yet fights it all the while. This is broken. This is bamboozling.

I cannot find a happy place today. I am entirely at a loss.

Why is he going to be forced to tread that water? Just to mix with kids who...

(get ready)

...don't see anything different whatsoever in Rukai other than he may do things a bit slower. To them, Rukai is Rukai. His mates are his mates. They don't care about The Tickboxes. These kids will be his Life Peers. Don't their observations carry any weight?

All I know is that those who have been most damaging to Rukai's progress are all the services who are meant to help us. They with their Tickboxes. We are not negative in our lives til they enter. And I cannot slam the door in their face. They think they're helping. In some ways they are. In more - the deep, very utterly personal ones - they are doing quite the opposite.

This life is unkind. My son is my world. This unkind life is already trying to tear him down.
Ponder those thoughts at 3 am.

I am in a place where I have no answer. But it's different now then it was at the start, because I have the past.
We have the past. We have each other.

But my shell is cracking today. My head in my hands. I look inside. It churns.

I listen to him sleep over the monitor.
That monitor we use for babies. That monitor I'd use til he's 25 to know he's ok when he's sleeping.
Because my son is my world and this life is unkind.

Fuck your Tickboxes. You do not make our rules. You will not write his story.

Time still rolls. We roll along.
Build it up. Build it up. Build it up.

Tuesday, 6 October 2015

First steps.

It wasn’t much to say but there he went and said it. “First steps.”

He looked about in his late sixties - one tanned guy full of vitality, pausing from his bicycle jaunt around the beautiful South Devon seafront. We were in the middle of our end-of-summer vacation, strolling along, luckily soaking up the last of the sunshine before the rainy season closes in. Rukai had one hand in mine, one in my husband's, and two feet chasing each other's shadows down the pavement in that gangly, stompy, slightly stiff-legged way all new walkers go forth and conquer.

Toddle, toddle. Pause, look at shoes. Look up at me, grinning. At Dad, grinning. Toddle, toddle.

We'd just been observing the boats moored in the harbor, and turned to find him there - an apparition of hope perched on two wheels, uttering those two magic words.

“First steps.” A huge smile. We all smiled back. But Rukai had more important things to do than to engage in conversation. No time, mama. I'm practicing. He tugged us back towards the path.

Toddle, toddle.

Sweet Rukai had been missing during the past few days, substituted by his secret ornery persona we've lovingly called Captain Crabbo. He wouldn't eat what we gave him, he didn't want to be in the house nor leave it, not in the car, not in the swimming pool. I wasn't allowed to dress him nor help him get dressed. I couldn't brush his teeth, peel a banana the right way, sing along with anything on TV, nor breathe to his satisfaction. Yet we persevered. As you do.

With Down's syndrome and it's delay, the Terrible Twos becomes an entirely new adventure. It's like a triple-length miniseries of Tot Terror. Some days that tunnel-ending light is covered over completely, like east London windows during the Blitz. Keep 'em covered til the danger has passed. He's going on four. This is a long road.

All kids go through Terrible Twos, but unfortunately for us, the longevity of this developmental stage brings with it that old Fear chestnut and its brutal questions: "what if he has a sensory disorder? Why doesn't he talk yet? I wish I could get him to control that spoon better. When will he stop casting?" For days, the sense of being overwhelmed quietly threatened - like those black boiling clouds that precede a hurricane, there it was. That fear which is the monster under my bed. Worse - it's the thing that eats the thing I'm afraid of. It's the Big Fear. The Great Unknown. Ye Olde 'What if?'

But no. Not today. No What If. Just what is. One life-experienced dude on a bike grinning at a toddler toddling. Two male creatures on either end of the life cycle grooving in the sunshine. The timing of this encounter was impeccable.

We bid farewell to bicycle guy, looked back at each other and smiled. Yes, yes, these days are New. But aren't they all?

He is three. These are indeed First Steps. There will be Seconds. Twentieths. They will all come one after the other, toppling like dominos, that happy click-clacking reminding us that in order to get there we always have to start from here. From somewhere. Tip the first block and every one thereafter will fall into its place. Still, we cannot predict precisely what that place will be. Life's mystery.

"First steps."

Easy does it. Every something new we take as it comes, one foot in front of the other. Our first steps as a family. Our first steps on this unknown journey.

We walk together along the sunny seafront that keeps those crashing waves at bay.