Friday, 10 January 2014
I've spoken before about how being a Down's dad has, at times, elevated me to superstar status, for people who think it's the job I was cut out to do. Very kind of them it is and very good for the ego.
But consider this. A friend of mine, Catriona, has a daughter with Rett Syndrome. Rett Syndrome is the Cinderella to Down's Syndrome. Catriona hasn't been invited on the media recently. It's nowhere near as sexy for reporters. What's that all about? We both have a disabled child, but somehow Stan's of more "currency". (A recent journalist request asked for conditions that "aren't too rare". Quaint.)
But Catriona writes a fantastic blog. After a recent post on Facebook, a couple of people came on and said they find her inspiring. I talked to her, away from the glare of her Facebook wall, and we both agreed that the word makes us feel uncomfortable.
We were dealt this hand and we get on with it in our own way. For me, this includes writing this blog, thumping the table on Sky News and making sure that Stan has a great life, included wherever possible.
I was approached in the park a few months ago by a woman who said that she'd seen me in the pool with Stan and how she thought I was a great Dad. Why? Because Stan has Down's? I could have been offended but wasn't because I see what she was trying to do. But, for all she knows, I could be serial killer on the side. Catriona and I didn't ask to be inspiring. We just do what we do and there are many parents of children (and adults) with learning disabilities who keep battling away. And that's why I wrote the Daily Mirror online article about why Rion Holcombe's success shouldn't be described as "heartwarming."
There are exceptions. Speaking to Catriona, she says: “I am very happy indeed if professionals (therapists, teachers, social workers and others), who read what we write about our children, feel inspired to do a better job, as a result of understanding better children like ours and the families who love them. That kind of “inspired” is good!”
Talking of teachers; at Stan's school recently, I fulfilled my role as governor and attended the Xmas term awards ceremony. It was fantastic and a good chance to see how the teachers interact with the students. Many awards, including high GCSE marks, were handed out. But I stopped short of calling it inspiring because it was far more important than that. It wasn't heartwarming, it can't be described as: "didn't they try hard". It was just what these young people should be doing. It was a rattling good night out, celebrating richly-deserved success.
Catriona tells me: “The problem I have with the word 'inspiring' is that it makes me feel 'other'; people are creating distance between us and themselves. This life could happen to anyone; it's not just for 'special' people.”
So I won't be calling Catriona "inspiring". She's fantastic of course, but she's motivated in getting the right things for her daughter, Amy.
Posted by Steve Palmer at 03:58
Wednesday, 25 December 2013
"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
Posted by Steve Palmer at 01:31
Saturday, 21 December 2013
Thursday, 19 December 2013
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.
Posted by Steve Palmer at 23:26
Thursday, 28 November 2013
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.......
Posted by Steve Palmer at 09:08
Saturday, 2 November 2013
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
Posted by Steve Palmer at 03:54
Saturday, 14 September 2013
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.
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.
Posted by Steve Palmer at 06:06