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.
Speak.

(Speak.)

Sing.
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.
Education.

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.

2 comments:

  1. I loved reading this post. I smiled more than I probably should have... only because I am happy because I am not alone. :)
    My daughter Bella was born in 2006... she is nine years old now and according to her little tickbox bullshit test she was 3-4years.
    Ha!
    Bella walks, talks and searches youtube like a professional teenager.
    These tests are dumb.
    That being said... is Bella delayed? Yup.
    Is Bella... Bella? Yes.
    These tests... doctors... therapists... etc- do not write her story either.
    Keep fighting mama! You are not alone!!!

    Renita.
    renitanunleyruiz.com (just getting a website up... I'll add photos of her :) )

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  2. Oh Renita I am so glad you took the time to comment! Thank you for telling me that and for letting me know that I'm not alone either. That is the whole reason I blog at all. Good on you mama. Go Bella go. Hear us roar. x

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