Thursday, 11 June 2015

All systems go again

So the good news is that Little E has a school to go to in September! We had a call from the special needs teacher at one of the other schools we’d applied to saying that they've read his reports from top to bottom and would be delighted to have E attend. They feel they would definitely be able to support and encourage him.

What a refreshing perspective. Even though they have a lesser rating from Ofsted (the UK Government office that inspects and regulates children's services), we’ve decided to take them up on their offer. Surely it’s better for E to go somewhere he’s wanted and where they are already inspired to help him, rather than for us to keep fighting for somewhere that clearly sees him as a burden?

Don’t get me wrong. I’m still furious about the treatment we got from the first school. We started a complaints procedure and received a letter back stating that they take exception to us saying they are being non-inclusive – they just don't think they would be able to accommodate E and strongly advise against continuing to try and get him a place with them. 

I have to say, it puzzles me as to why E would pose such an insurmountable problem to them. After all, the numerous medical and educational professionals who have met and officially reported on him all agree that he will thrive in, and be an asset to, a mainstream school as long as he has extra support (which he does). I could understand if the school already has so many children with additional needs it just wouldn't be viable for the teachers to manage another one. However, on reading the publicly available school intake information, it turns out that this particular school hasn't accepted any children with additional needs this year. Our "non-inclusive" comment doesn't feel that far off the mark...

Ultimately we’ll have to drop the fight soon. It galls me that we'll be letting them get away with this behaviour as they’ll just carry on ticking the box for being an inclusive school when they’re so clearly not. However, we’ll have other fights heading our way over the coming years and for now it’s better to focus our energy on working with the school that have accepted E to ensure he gets the best out of his time there.


Sunday, 17 May 2015

It's little wonder people give up

Not my usual upbeat post I'm afraid - but I'm so frustrated I need to vent!

A few posts ago I wrote that we've been going through the statementing process for little E for the past 9 months. It's a very tedious form and report based system but the hope is at the end of it the Governnment will allocate him additional support at school so he can focus and learn to his full potential.


I've lost count of the amount of times we've had to document what's "wrong" with E rather than what's "right". The amount of times he's had to be seen by professionals who have then written their own reports about what's "wrong" with him. And the amount of meetings we've attended in order to tell new people in the process what's "wrong" with him.


It's a hugely upsetting process as K and I (and C) spend every spare minute encouraging little E to hit milestones. When he does we all feel amazingly proud of him and have crazy celebrations as we know how much effort has gone into reaching them.


This week the system stuck the boot in again.


We'd got to the stage where E had been awarded additional hours - although not enough to cover him full time as he's not deemed "severe" enough. We presumed that we were nearing the end of this particular battle. Instead we got an email from the school he's supposed to be going to that begins: "E obviously has severe needs and we do not feel that our school is the most suitable or appropriate for him". It then goes on to list in great detail why he's not welcome.


This particular mail made me feel sick to my stomach that a boy as sweet as E has been judged "not worthy" of going to their school. It also made me wonder how the same system can judge him to be "not severe enough" and "too severe" at the same time. Surely it's one or the other?


Clearly K and I will take our "man up" juice (most probably in the form of hard liquor!) and then keep fighting until we get E the place he deserves. It just feels as though it shouldn't be this hard.







Friday, 15 May 2015

It's been a blast

This week has been one of the most manic & exciting that I've had in a long time. This is what happened in a nutshell…

1.    The bit you may already know: I won a silver medal in a gymnastics competition (no – honestly – I really did!)

The bit you may not know: I’m so clumsy that I twisted my ankle in the warm up and had to sit like a muppet for a couple of hours with an ice-pack round it (doh)

The soppy bit: Big thank you to Frank & all my Friday ladies for making gymnastics a fab place to be!

2.    The bit you may already know: I had 6.5 minutes of fame on ITV’s This Morning programme talking about Williams Syndrome (This Morning - Little Miss Sunshine)

The bit you may not know: I spent almost an hour in make-up for that 6.5 minutes (no comments please!). Laying an old saying to rest: I'm pretty sure the TV doesn't put on 10 pounds. The presenters are just so, so tiny they make the rest of us look like hulks!

The soppy bit: I now have a huge crush on Phillip Schofield for being amazing enough to ignore the producers when they said we couldn’t mention the Awareness Day - and not only did he mention it, he also let me take a separate video we could use on the day.

3.    The bit you may already know: We've had the first ever William Syndrome Awareness day in the UK today: www.sayhello.org.uk

The bit you may not know: There have been enough cakes sold on behalf of the Foundation today to feed a small (or maybe large) army, 6,000 stickers have been given out, thousands of temporary tattoos, leaflets, posters, T-shirts, etc, etc! And we’ve made over 55,000 impressions on twitter & reached over 40,000 people on Facebook!

The soppy bit: A huge amount of work by a relatively small amount of people went into making today a success. The Williams Syndrome Foundation team and all the members around the country have worked their socks off and I’m very proud to know them! 

That's it. I'm off to drink a vat of wine & get back to normality.





Friday, 13 March 2015

"Please have your 2 year old fill out this form"... Huh?

We're currently going through the process of applying for additional help for E for when he starts school in September. He's a sweet and charming boy but he does have developmental difficulties and left to his own devices he wouldn't stand a chance of "accessing the learning".

Without extra assistance I imagine his first day to go something like this:

·         Spend a few hours quietly re-ordering pens and pencils
·         Surreptitiously paint own hands, feet and clothes (avoiding all paper)
·         Chase classmate round trying to touch his nose
·         Get bopped on own nose for harassing classmate
·         Find trike in playground and spend 20 minutes attempting to get on
·         Smack another child when they try to take trike
·         Get excluded.

So, in order to avoid that scenario we’re applying for help. The process is very tedious and more than a little bit daunting.

Please don't misunderstand me. I'm incredibly grateful that this type of help exists (and indeed all types of help) and I'd go through a lot more to ensure E gets what he needs. However, we've had a different set of paperwork to fill in every week for the past 4 months now and I'm starting to go a bit batty.

Today I received an email entitled: "Ref: 2059375". It told us we need to attend a meeting in April with a number of E’s other carers and therapists. We’re moving our diaries around and taking guesses as to what the meeting is about as apparently we’re not on the “need to know” list for that.

This week’s form made me chuckle. “Using your child’s own words please detail how he feels extra help would benefit him and what he would most like help with”. Right. Well E has a developmental age of 2 and has just learnt to say “I need biscuit”. If this wasn’t so important I would have filled it out to be a very entertaining read…

Anyway, for the moment we'll continue to put our faith in the system, keep writing until our hands seize up and hope that we’re doing enough to get the official tick in the box come May.





Saturday, 24 January 2015

Earn an honest bob...


This week I was reminded of a sketch by Micky Flanagan. In it he talks about the unwritten contract between a homeowner and a window cleaner that allows the cleaner to have a good old nose around whilst the owners pretend they can't see him.
The reason this came to mind? Last week we were due out for an early evening meal. Mum & Dad were joining us and they turned up a bit early to keep an eye on the boys so that I could quickly get changed. They gave me the nod and I dutifully bounded upstairs, flinging clothes off as I went. As I ran through the bedroom door I still had jeans on but was down to my bra.

At which point I hear Little E say “Hello Daddy” downstairs. “Oh,” I think. “K’s home a bit earlier than expected”. 

As I take my jeans off I hear a noise against the bedroom window. I whizz round and come face-to-face with the window cleaner who gives me a very big grin.
I have no idea what to do so I simultaneously yelp, go bright red and fling my arms across myself. He then does the gentlemanly thing and pretends to be extremely interested in a spot on the window, leaving me time to grab a robe and make a swift exit to the bathroom.

A few minutes later, I'm properly attired and he knocks on the front door for payment. Straight faces all round (mine still a bit pink) until he turns to go, tips me a wink, flashes another wide grin and goes off to regale the story to his mate who's waiting in the van.

Ah well, could have been worse.

Note to self: E refers to K as “My Daddy” and most other men simply as “Daddy” (that’s led to a few interesting conversations!) - I  really must try and remember that!


*Clearly this isn't a picture of my window cleaner. Nothing wrong with a bit of wishful thinking though!