Welcome to Copenhagen

30Mar10

I booked a ticket for Paris. I started on the journey. It was fun, and exciting, and I was looking forward to getting to Paris and enjoying myself when I got there.

Imagine my surprise when *that* journey ended today with the announcement ‘Welcome to Copenhagen’.

eh?

OK, I’ll translate. I’m not, of course, talking about a holiday.

A couple of months ago Rumpus’ teacher told us that potentially he had special education needs – specifically, inability to concentrate, perform the tasks requested of him, organise himself, and particularly anything to do with recording – writing, drawing, etc. It came as a bit of a shock – Rumpus has always been a law unto himself, but we never doubted his intelligence, nor his ability to achieve anything he set his mind to – after all, this is the boy who, at the age of two, could identify the manufacturer of every car he saw based on badge alone and who has an encyclopedic knowledge of Thomas the Tank Engine, Dinosaurs and Mario Karts.

And so we started the process – first step, his class teacher recorded an ‘Expression of Concern’ … with no diagnosis, the assumption was dyslexia – we could deal with that, but we needed a formal assessment. This in itself appears to be a minefield, and opened me up to a whole underworld of school politics I’d never before even guessed existed, around the personal beliefs of teachers, the head, and the funding system around Special Educational Needs. Yes, the government might well say he has rights, but we’re going to have to fight for them. It is not a simple process, and it is not easily understandable, involving many different departments, and the uninformed will simply not find their way through the maze – there are no maps save those made by other parents, willing to share, and the maps we make for ourselves.

So we visited the GP, and got a referral to the community paediatrician.

These things take time … and in the interim, we treated him as if he was dyslexic, and his reading, at least, has improved dramatically.

We had his appointment today, and after a long and tiring session the conclusion is that he has an Autistic Spectrum Disorder, with dyslexia as a side and a possible ADD complication.

However, we have been referred onto the *next* waiting list for a full and detailed psychological assessment, speech and language assessment and educational assessment …. but because they are under-resourced, it could be another six months before we get those appointments.

It’s difficult to deal with – if I see a problem, I want to fix it *now*. To have to wait such an appallingly long time for any sort of follow-up is so frustrating it’s painful. This compounds with the fear that his problems academically, already flagged up as severe to the extent that he won’t cope with his next year at school and needs to be demoted from a group with his intellectual peers to those less able, will leave him floundering and falling behind even further. He’s not a bad child – there’s not an ounce of malice in him – but I worry that if he doesn’t get the help and support he needs soon, he’s going to start failing at school, and once he goes down that path, it’s a long road back.

We’ve been given a huge amount of information … a lot of it useful, though rather overwhelming right now, most of which focusses on the idea that an early intervention is vital to ensure a long-term positive outcome … but these bold statements of what ought-to-be don’t sit quite right, in my mind, with the statement from the doctor that we saw today who told me that they were a small team with an enormous workload and without the facilities they needed to provide the service they were supposed to.

And even if we could afford it, there isn’t a private alternative.

It seems to come down so much to parents to research for themselves the background information, to put in place the support needed for their child, and to ensure that the rights the government says are theirs, are delivered.

And so we find ourselves in Copenhagen.

It’s possibly a beautiful place, with a history and culture and rich life of its own. But it’s not Paris. It’s not the place I expected to end up in as a parent, and that’s going to take some time to get used to. Yes, there is disappointment, and inevitably a sense of guilt and failure. The landscape is not what I expected, and I can’t feel as joyful or postive about it as I possibly should.

But it’s an adventure. It’s unexplored territory, and it’s going to bring it’s own trials and rewards, possibly just as Paris would.

And Rumpus is still the same. This big scary ugly label that’s been slapped on his forehead doesn’t change who he *IS* one whit – it just explains, to a degree, why he’s like that. And it opens a way for us to help him fulfil his potential.

In a way, he’s lucky. When I was in school, this sort of thing was not common currency or part of the generally accepted currency of the educational establishment. Children like Rumpus (and like ME) were merely labelled as ‘naughty’ or ‘disruptive’ or ‘lazy’ and treated as criminals or outcasts.

I guess what it means for us is that we need to do our homework: what is this, what does it mean, and what can we do – not to change him, but to help him.

I’d be lying if I didn’t say the prospect was daunting – with 3 children, a business and a home to manage, reviewing, relearning and reconfiguring our parenting looks like the biggest mountain in the world to climb.

But then I remember what I read in his literacy book this afternoon. He was supposed to be writing a story, but instead he wrote:

“I love my mum so much I have to fall off my chair bonk”

Even now, it makes me smile.

I need to hang onto that.

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2 Responses to “Welcome to Copenhagen”

  1. 1 Erin

    Hugs. Yes, early intervention helps prevent the problems from getting worse, but what do you do when the resources aren’t there? {{{HUG}}}

    Is there someone in the government you can write to — not asking for special favors or anything, but just to say “This is the state of things and something should be done”?

  2. I’m not sure about writing to the govt. I’ve written previously on subjects close to my heart and just got brush-off answers, so my suspicion is that’s what I’d get if I tried now. I’m not sure I like the alternative either – my MP is in the opposition shadow cabinet, and I’d hate to see Rumpus become some sort of political football.

    I think riding it out and doing as much as we can to research and put in place our own solutions is the best route forward …. even if it means it takes a bit longer to get there.


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