Sledgehammers, heroes and graduation.........

Half way through Stan's leavers' assembly - just after it hit me like a sledgehammer between the eyes that he was about to leave Holly Park School - I caught sight of two heroes. I've spoken before about heroes. Like Dr Victor Tsang and his team, who saved Stan's life. Like James O'Connor, who scored a special Stoke goal and gave me the strength to take on this life with Stanley Matthew Palmer. 

If Victor and James gave Stan his strategic direction, his headmaster John and learning support assistants, Ann - and Sarah Gregson - got stuck into the "to do" list and took that strategy in a day-to-day direction. Remember, Holly Park is a mainstream school and we had no idea, back in 2005, what would happen. But Stan's brother and cousins were there and it was important he went there too. 

Many staff and pupils at Holly Park - for eight years - have contributed so much to Stan's life and he's given back. One card he received said just that. So thanks to everyone. 

But thanks especially to those three people. In the emotional assembly, I caught John and Ann's eyes and glimpsed eight years of passion that's been channelled into my son's education. I wish Sarah could have been there today to see him 'graduate'. 

The irony is that John also left the school today. Job done.

Just to spell this out so I'm absolutely clear. Those three people have joined the list that started with Victor and James. 

Friends for life. 

Sweet shops, chromosomes and parenthood

That letter to the i - the 20p version of the Independent - which is not yet published. 

Your story about Down's Syndrome suggests "chromosome therapy" in the future;  I tweeted "A cure! Oh, small print says 'decades of research'........never mind". Because, while we wait for a pill that may or may not help my son, Stan,  we're attending to the day-to-day tasks. Also, parenthood is not like being in a sweet shop; every person is different.  Stan's funny and irritating, stubborn and gorgeous. And he leaves his mainstream primary school next week, where he’s added so much to the lives of everyone there.  I'd probably ask him to take a magic pill, but I'm not hanging onto the hope of one soon. We're just getting on with it. 

Down's Dad. 

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.