Down's bro film

"This is my brother. He can be very cute. He can also be a little shit."

And to think I asked for "heartwarming and earnest"....I'd been asking H to make this film for a while and he did it, edited on his iphone, in his own style.............

Down's bro film 

Rion Holcombe: It's just the way it should be

There's been much interest in Rion Holcombe, who has got into Clemson University in South Carolina. The Daily Mirror called the story "heartwarming" and here's my response. 

Article in Daily Mirror. 

Non-offensive elf

Stan doesn't have baby-sitters. He has carers. Often they're family members. Often we pay someone. But they're carers. This is an important distinction for me for a couple of reasons:

1. He's nearly at the age whereby, without Down's, we'd be able to leave him on his own for a while, or let him walk home alone. Therefore the person looking after him isn't looking after a baby. He needs extra support. That's it. So I've told those who look after him that they're skilled carers, not baby-sitters. 

2. It's easy for people to fall into the "mental age" trap. I can't imagine people being offended by Elf with Will Ferrell, and I'm certainly not. Ferrell plays a character who has never grown up; and still wants to be a child. That juxtaposition is funny and endearing and it's a lovely Xmas film. Stan is almost twelve and even though he sometimes enjoys things like the Wiggles, a pre-school group, he will also sit through something like the Hobbit. (Depending on the mood). It's simplistic to say that people with learning disabilities are somehow stuck on the "eight-years-old" bubble. And it's patronising. I'm uneasy about the defence that this man's attorney uses in this recent video news report. 

I've told Stan about the Santa thing. The beauty is that he probably does really think that Santas only live in shopping arcade grottos. He doesn't care if the "chimney thing" is real or not. But he's just as excited about Christmas as any other eleven-year-old. 

Am I being all politically correct here? So what if someone describes it as baby-sitting if they are doing a great job? Well; I suppose that there are enough people around who will always assume Stan is still stuck in a child-like bubble that he'll never escape from. And avoiding that sort of language may make people understand, a little bit more, that Stan's perspective on life is so much more intricate, complex and interesting. Merry Xmas.

Palmerstar Galactica

OK, I've been accused of ignoring my Dad duties; the scourge of watch-all-you-can streaming TV-on-the-internet. I've been watching too much Battlestar Galactica. The human race is threatened by the naughty Cylons. But it was the humans who created them. So, here's the opening credits, followed by Stan's unique take.......

Palmerstar Galactica

Stan's TV debut

Responding to this story, Stan and I went on BBC London to say that testing is just one part of the equation. Couples with a diagnosis also need to have access to the great support that's out there. Watch out at the end as Stan's cousin reveals her crucial role in the filming.....
BBC London TV 01 November 2013

...and here's the radio recording from BBC London 94.9 fm 

Crimes against mix-tapes and the small matter of a new school..........

Down's Mum got a lovely birthday present from Down's bro-in-law; a compilation cd with artists from the 80s (ABC/Associates/Magazine). But it's NOT a mix tape. No one called it a mix tape in the 80's - that's an invention of fashionable young things from the 90's. It's a compilation tape. There. I feel better. 

With that in mind, Down's bro asked me last night if I missed "being young". Cheeky git. But he's got a point. I remember entertaining some older people at an event when I was about 20 - Down's Mum was there too - and I remember wondering what it would be like when we got old. Now, here I am, knocking on that particular door.

But, waking up this morning, my reaction last night has surprised me. I told him I'm very happy.

Stan's started in special school / secondary this week. Here he is waiting for his bus. No doubt something will come along to cock up this equilibrium. But today we're happy. I may even make everyone a compilation tape. 

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.

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.