Saturday, 15 October 2011

The Atheist in the room and God bless us everyone

Well our Christmas tree is up. Yes I know it’s the 15th of October and that we haven’t even had Halloween yet but Emily has had a difficult couple of years since she had a seizure two Christmases ago so we saw her keenness to get a tree as a good sign.

It wasn’t a lengthy seizure her last one lasted a terrifyingly long twelve minutes. Due deference to all those who have longer and more serious episodes. That must be unimaginable; this was bad enough and left her unable to speak clearly for two days.

It does however mean we will be running the gauntlet of the disapprovers.
I have my responses prepared.

1) Yes I do know it’s only October.
2) Yes I know we haven’t even had Halloween yet.
3) Yes it is shocking that Christmas gets earlier every year and that this this takes the biscuit.

I won’t say this with words though. I’ll smile and say something a lot less confrontational and a lot more ameliorating and end up with a Herbert Lom honouring eye twitch by Christmas Day.

We’re also not quite at her therapeutic dose for her anti-depressants and her violence is really starting to take it’s toll on me after 20 months.

This isn’t a parent whinge just a statement of fact. I understand why and I know it’s not her fault so that’s that. To be 14 is tough enough let alone being learning disabled with Autism.

Anyway the weekends are really hard so what her refusing school and respite and my coccyx still healing after being lobbed across Sainsbutys in the summer I’m probably feeling a little oversensitive.

Tonight was very bad and once the meltdown had settled sufficiently to get her epilepsy meds into her we all headed out grim faced to go to Sainsbury’s.

It’s not wise clearly but it’s her only trip anywhere. We’d negotiated the demands and drawn up a list and were determined to follow the list to the letter. To her credit and after a short chat with a community policeman (willing to try anything) who was very nice we got it sorted.

Heading to the car a woman got out of her car which was parked in a disabled bay. She limped as she walked away but by the time she reached the entrance she was walking normally again. I checked her car parked next to ours and surprise surprise (not) there was no badge.

This really pisses me off.

When you think what is being done to disabled people the length and breadth of our “civilised” nation currently deemed scroungers and being stripped of their crucial benefits; people like that woman are a fine example of “people” who need to have a word with themselves.

Granted there were other spaces, granted she may have had a hidden disability but badges are hard to get and if you’re disabled or a carer you always display your badge. You don’t want to be one of those people. Those people are foul.

So no she wasn’t disabled. She was just lazy.

I think what it demonstrated to me again is just how far from understanding, compassion and tolerance we as a society have fallen as the targets de jour of the government and their pals in the right wing media are now disabled people. When did that happen?

Anyway I didn’t say anything this time. I didn’t trust myself. When you’re on the edge of losing your temper it only takes a little thing. I have to keep calm and patient so much at home that an opportunity to shout in the face of a selfish asshole may prove too tempting.

Plus I think it would possibly have sent the wrong message to Emily. It would have been mortifying to have found myself under arrest by that lovely community support officer.


  1. Nicky you are amazing.. facing the challenges you do on a daily basis I'm not sure where you muster the energy or will to fight a system and at times a society that seems to condemn the genuine, whilst allowing those with no care or compassion to continue without a second glance.
    Emily is so lucky to have you as her mummy. At a time when her hormones are screaming inside her together with her disability she has someone who loves her unconditionally, someone who shares her pain physically too.
    You are only human, but you seem to be one of the exceptional humans. The one that can share compassion and can fight for others whilst facing a life on a roller coaster.
    Deep respect

  2. Oh you are far too kind but thats so lovely thank you. all love Nik xx

  3. Nik - sending you so much respect, strength & love for the way you are raising Emily in the face of serious challenges, and much joy as she continues to thrive in your care. And as for the vile parking-lout, this happens to me a lot in supermarkets and elsewhere; had one v. nasty young (not disabled) man threaten to deck me for just looking at his non-badged car! They're shits - that's all - and those responsible for car parks' disabled spaces should be more vigilant.

    Oh, yes, and Merry Xmas! ♡♥✰✮❄☃xx