Jordan Luke Perry-Smith 2/02/91 - 24/11/12

Well, here's a blog post I never thought I'd write. I'm sorry to tell you that my son died very suddenly and unexpectedly last Saturday. His final words to me were 'can you pass me the scissors?' as he wanted to open a packet of pasta for his lunch. Literally seconds later, he had a massive seizure and his heart stopped. The ambulance was there in a flash and a team of six fought to get his heart started again. We transferred to King's Hospital (who were brilliant) where they tried again but it was no good. They stopped resuscitation after an hour. His time of death was registered as 14.45 but I'm reasonably sure that he died at home. I think he wasn't in any pain. His sister, carer and I sat with him and I'm glad to tell you he looked very peaceful. His poor dad had to fly back from Thailand, where he'd been on business and saw him on Monday. The funeral's not for two weeks or so while they conduct post-mortem tests to confirm a seizure. Now I must away to tend to my family. If it seems like I'm coping, well, I am. Six months from now I'll be howling at the moon.

Blimey!

Has it really been more than a year than since I blogged? All going quite well, I think. Jordan has lost a lot of weight, which has improved his mobility. He really enjoys college and is trying out taster days for horticulture and art (with a view to pursuing further courses next year). Fixations to date include relatives (and visiting them), dressing up like Bill Sikes out of 'Oliver!' and the wearing of denim jeans as opposed to tracksuit bottoms. The absolute favourite though is our proposed holiday in Barmouth, Wales at a place called Twr Mynach. It really does have a tower, much to the boy's delight, as he thinks it's Hogwart's. A re-enactment of Rapunzel will take place.

Portrait

Jordan's dad knows the artist Marc Quinn and recently commissioned him to do this portrait of Jordan. It's a photo-realist picture that measures about 3 feet by 4. We're knocked out by it!

At last.

Good news!

Sanity has prevailed.
Steven Neary will be home for Christmas with his dad.

Hillingdon Council should hang its head in shame.

Don't bother knocking on the door of Hillingdon Council and expect common sense and expertise knowldge to answer.

Apparently they don't have any. Oh, and that goes for respect for the human rights of those with autism.

Read the following link and weep. If you get a 404 message, it's the post on the Orwellian Present you should read.

When you're done weeping take a moment to sign the the petition.

For shame.

It's an outrage!

Yes, you'd think the boy would know when he was well off...

Here he is in the embrace of his lovely PA, Honor, who has become a veritable lynchpin of the household. She accompanies Jordan to Surrey Docks Farm on a Monday to chase the chickens and fettle the ferrets.

Cutbacks

Now I could be wrong, and I'm very happy to have my opinion disproved but I really feel that tolerance of, and provision for, people with disabilities and their familes and carers, is about to take a big whacking. This is due to current financial constraints. In a time of plenty, everyone is more than happy to empower disabled people and trumpet loudly when an autistic man is manipulated by so-called friends and killed by them, or be horrified when a mother and her disabled dughter die in horrific circumstances in a buirning car after decades of abuse from neighbours and indifference from the police but I wonder how much all this will fade away with the tightened budget now proposed by the current government? DLA mobility removed from those in long-term residential care, for example. Well, I suppose they don't wat to upset the normals do they, with their inconvenient demands to move about in society. Really, shame on the PM, you'd think he'd know!

I'm telling you now, all the advances disabled people have achieved in the last few years are about to fade away, slowly but surely. Fortunately disabled people are often a mouthy lot. They may not be able to get out and about (and for some, that freedom will be constrained still further) but they can use the internet. Over on Twitter @bendygirl is a locus for protest. I urge you to follow her and her #BofB campaign. Let's protect the hard-won rights that disabled people currently (I was going to say enjoy) but really, I mean NEED in order to live their lives in the way they choose.

That is all. Rant over.