Stan's lyrics

I was torn when considering what quote to put at the top of this blog, to sum up how I feel about Stan. I do like to think that certain song lyrics attach themselves to us quite usefully, so that those pensmiths who've created such great lyrics have also summed up how I feel in a handy quote. Here they are, starting with the headline quote...........I'll add more when they spring to mind......






 
"Let's go crash that party down in Normal Town tonight." 
B52s / Deadbeat Club / Cosmic Thing / 1990

"Sometimes you look so small, need some shelter
Just running round and round, helter skelter
And I've leaned on me for years
Now you can lean on me
And that's more than love, that's the way it should be
Now I can't change the way you feel
But I can put my arms around you
That's just part of the deal
That's the way I feel
I'll put my arms around you."
Massive Attack / Everything But The Girl / Protection / Protection / 1994

"And years make everything alright. You fall on me for anything you like; and I, no I don't mind." 
 Keane / This is the last time / Hopes and Fears / 2004

"I'm losing sleep; I'm losing dignity." 
Edwyn Collins / Losing Sleep / Losing Sleep / 2010 
(That one's ironic)

Scouting about

Stan's now a fully-fledged scout and I've got sore fingers from sewing on his badges. But, oh so proud. Earlier in the week, just as he was going for his bi-yearly heart check, I got an email talking about the upcoming investiture. Stan's name was on a list of those chosen to perform the Scout's Honour. It was a great moment to tell his cardiac consultant about.

Been there, done that, got the T shirt

Being stared at is a challenging thing and I've discussed it in the past. (And here) But with this T shirt I'm positively encouraging it. And you DO get stared at. Running in this bad boy gets awareness going. I think it lends itself particularly to running as it's not exactly a fashion item. But you can wear yours when you want........They're available for £10 + £2 from the Down's Syndrome Association. So, instead of walking around with Stan wishing people weren't staring, I'm running around thinking "Stare! Just stare". And they do.  Who knows, maybe they'll stop staring when we're out and about as a family. Or I'll have to quickly throw the T shirt on.............

28 March 2013 - Updated version of this blog at Learning Disability Today 

Letter to Evening Standard - Undateables

Kate, from the Undateables

Victor Lewis-Smith's article on the Undateables is here - and my reply is below - in the Evening Standard ~ 





As the parent of a boy with Down's Syndrome, Victor Lewis-Smith's review of The Undatebales was a refreshing read. He not only stood up for people who are vulnerable; he also tried to get to know their characters and understand their points of view. He worries about whether these people should appear on TV. Of course it's a concern; we steer a fine line between protection and offering life opportunities unthinkable to people with learning disabilities even a few years ago. All I would say to him is ask the people who were in the show, whether they were happy to be filmed. It's a good starting point because they can more than contribute to their choices in life. 

Lost properly

  
I've been back-cataloguing and watching Lost from the  start. If you don't want to know what happens, look away now. In a way it's quite offensive to disabled people. Not only do none of the plane crash survivors develop impairments after they plunge thousands of feet onto a beach; one of them is even CURED of his disability BY the crash! And another has her asthma cured via the medium of eucalypti, because they couldn't find her inhaler. So it's not based in reality and really offensive. And I'm enjoying every minute. 

Leaving that one side - and that's a huge buck-passing moment - it's got me thinking. Some people say that having a child with DS is like getting on a plane to France and ending up in Italy. I prefer to say it's like getting on a plane to France and ending up, crashing on a strange, inhospitable island, where polar bears and wild boards threaten you so you can never relax, and there's no chance of being saved! That said, some of the characters discover themselves, so there's that. But we got dumped on that island and we're spending our time dealing with the day-to-day living, rather than throwing up flares. 

But the interesting character is Jack. He spends the first few minutes of the first episode being completely bamzooled, stumbling about, as seen in the picture here. Then he pulls himself together and gets on with it. Been there, done that.

1/2 Marathon update

Two hours, 15 minutes and 39 seconds. OK, the picture looks bad. I was multi-tasking, uphill. 

I do hope that anyone working in maternity and midwifery services will look at the excellent page about training - to know what to do when a child with Down's is born - Tell it Right Start it Right.

It's Royal College Of Midwives (RCM) registered. 

"I feel much better prepared to provide information and support regarding Down's syndrome."

1/2 Marathon - Don't pay me - but click this

TELL IT RIGHT, START IT RIGHT

It has to be said that the way the hospital where Stan was born didn't deal with his Down's Syndrome diagnosis well.

He's 10 now so I have no idea what it's like for new parents these days - I hope it's better than our experience - but in fact I don't have to hope, because there's a great training scheme for maternity units, midwives, ante-natal staff  and anyone involved in bringing children like Stan into the world.

So I'm running a half marathon on 28 October and I'm saying "Don't pay me anything; just go to "Tell it Right, Start it Right" - and get as many people who work in maternity to do so, in case they feel they could do with this fantastic training scheme from the Down's Syndrome Association. It's accredited by the Royal College of Midwives and in the last year, over 350 staff have been trained up. Staff are given up-to-date, accurate and balanced information about living with Down's syndrome in 2012, along with the vital issue of how to improve the way that parents are told that their child has Down's, or if they find out during pregnancy, will have Down's. 

We were told in a very poor way and left to cope. But that experience only proves that specialist training is sometimes valuable.
 

So, do pass the web page onto any maternity staff you know of. Let's see if we can get lots of page hits for the Down's Syndrome Association's training page. I'll run to that...........