Steve Palmer's blog about his son Stanley - who has Down's Syndrome - & the extended family.

Thursday, 19 December 2013

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.

Thursday, 28 November 2013

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

Saturday, 2 November 2013

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 

Saturday, 14 September 2013

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. 

Wednesday, 24 July 2013

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. 


Friday, 19 July 2013

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. 

Saturday, 8 June 2013

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

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