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.