A testing time

 

There are few days like this, offering a chance to raise awareness about Down's on the media................
Yesterday, I woke to hear that Down's Syndrome had hit the headlines. I spoke to Sky News about my reactions and also to LBC Radio, saying that any new research is to be welcomed but new and prospective parents must have access to the great range of resources that can support them, when they receive a diagnosis. 

Sky News recording is here 

LBC recording is here 

Also - Nikki from our group on Sky News

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 lyric-writers who've created such great lyrics have also summed up how I feel in a handy quote. Here they are; I'll add more when they spring to mind......  


“Oh this boy, he's got a heart of gold
and gold's the most precious thing,
you could ever hold and
if his heart is made of that, what we will
be told, just give him love, an everlasting love.
Give him love”
Ben Watt / Some things don't Matter / North Marine Drive / 1983

"You shut your mouth 
How can you say 
I go about things the wrong way? 
I am human and I need to be loved 
Just like everybody else does" 
The Smiths / How soon is now / Hatful of Hollow / 1984

"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 / Tracey Thorn / Protection / Protection / 1994

"No more crying
Feel alright now 
Lord, I thank you 
I'm gonna put it on."
Bob Marley and the Wailers / Burnin' / 1973

"Lucky there's a family guy. Lucky there's a man who, positively can do, all the things that make us laugh and cry."
Family Guy / 1990's

"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

"May you never lay your head down without a hand to hold 
May you never make your bed out in the cold."
John Martyn / Solid Air / 1973

"Sharing horizons that are new to us,
Watching the signs along the way,
Talking it over just the two of us,
Working together day to day
Together.
And when the evening comes we smile,
So much of life ahead
We'll find a place where there's room to grow,
And yes, we've just begun."
The Carpenters / We've Only Just Begun / Close to You / 1970

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

And one for this brother, played when he was born

"Stir it up, little darling"
Bob Marley and the Wailers / Stir it up / Catch a Fire / 1973

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 Undateables 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 boars 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."