Downs with the family

down's with the kids

Saturday, 7 June 2014

Really freaking out

Woman on a packed train home. Three-year-old daughter. Screaming. I mean, really really screaming. In the rush hour. My first reaction was one of pure relaxation. How selfish of me to find someone else's misery something calming. I've been here, on public transport, when Stan's either wanted to have someone's seat, cuddle them to death or scream the carriage down. 

And was someone else's turn. Perhaps she should have got off because everything she tried didn't work. On the other hand, she probably just wanted to plough on through to her stop. Her daughter said that she didn't want to sit on her knee. Overhearing this, a kind passenger (not me; I was standing) offered her seat, but the Mum knew that the girl was flailing around looking for anything to say. She turned down the request and the crying continued. 

Then the high-pitched screaming really started. I hurt my left ear in 2005 at a Chemical Brothers gig. I carry special music ear-plugs for just this situation because loud or high-pitched sounds hurt my ear. But I couldn't put them in; I had to let my ear get hurt a bit. How could I, possibly the only person on the train who understood what was going on in this poor woman's head, suddenly fish out two specialised protection ear plugs to drown out her daughter's cries? 

You could just feel that the carriage was desperate for it all to be over. When Mum and daughter got out, lots of people were staring and I got mighty close to asking them to "go about their business" without adding to this woman's woes. 

I wanted to tell the woman that I know her pain, and that I understand that her daughter's not really like that. But her body language was telling the rest of the carriage to back off. No surprise there. 

Life can be stressful for a parent with or without a learning disabilities to deal with. I wanted to point out that the girl will calm down, and they'll laugh about it one day. But I don't think she was in the mood to listen to that...........But I had as sense of 100% empathy. 

Sunday, 1 June 2014

Waiting for the World Cup

"All little sisters like to try on big sisters' clothes" opined Elvis Costello on his much-unappreciated Imperial Bedroom album. Well, sometimes it's brothers who do the same and I have to live with the fact that Stanley (named after the family team's greatest son, Sir Stanley Matthews) is wearing his brother's old shirt, making our family look decidedly biased towards a certain North London local side. 

He likes the shirt. So, what's a Stoke fan supposed to do? Down's bro decided long ago never to walk in anyone's shadow, especially his entire family's football team. And I'm proud that he's stuck to his guns (geddit) under tremendous pressure. It could have been a lot worse; if it had been Man United he'd be living in the shed. 

The same goes for Stan though. Imagine; putting a little disabled boy in the shed. Luckily, I didn't have to. 

I've spoken before about how football has bound us as a family. I recently was lucky enough to take Down's bro to the cup final. It was fantastic to give him the chance to see his team win. And I've spoken about how that goal by James O'Connor played its part in saving Stan's life. And how Stoke's losing appearance at the Cup Final in 2011 was a good day for our family. 

I usually hope to blog with a decisive message; something we can all learn from. This entry, however, is really just an excuse to say that we're very excited about the World Cup. That includes Stan, when we persuade him; I wonder if he'll fit in that old England shirt?.....

Friday, 11 April 2014

Luis Suarez and the rewritten headline

After the success of the "happy" video for World DS Day, I pledged to a friend, on facebook, that the next time I saw a "suffers from" headline I'd be onto it. I didn't have to wait long. The original title of an article said: "Luis Suarez stops to play football with Down's Syndrome sufferer". But I pointed out that the boy probably wasn't suffering at that point. I actually clicked on the email that goes to "corrections and clarifications". Well, they were fantastic and within minutes had rewritten the title. Here it is. 

This is important because the article, on an American site, went on to be syndicated on many other news/sports sites. Luis Suarez needs all the good publicity he can get, and this was a human-interest story that's not usually associated with him. So it has 'legs' as a story.

Therefore, it was good to nip this in the bud. 

The editor did confirm that they were using journalese, but had the grace and emotional intelligence to immediately understand what I was saying. So, if you get one organisation to nudge their 'style guide', that's good. 

Why so important? Aren't people with DS referred to this way every day.....and isn't it usually much worse? 

With words, I'm usually less bothered than some people....usually. It's just that, in the week where people with Down's were shown to be...oh so normal, it jarred. And I know that the use of words is very important to many people. Just tell someone who uses a wheelchair that they're 'wheelchair-bound' and expect an animated response. 

It's good to think that we can change attitudes by changing some words. (Of course there's so much else to do). Because the title of the article is now much more empowering, less patronising, and, dare I say it, dynamite for Luis Suarez's PR machine. 

Well done to the Bleacher Report, who runs this site. One small victory. 

Saturday, 5 April 2014

'Suffering' from Down's?


The next time someone throws that old cliche your way, show them this.

Saturday, 15 March 2014

Dance champions

Stan and Nicholas after they stormed the show....

A former day trader has helped Stan and his friends turn a placid audience into a seething crowd of appreciative whoopers and hollerers. 

Redfoo makes up half of the electro house duo LMFAO, and it's their song that Stan's school danced to in the battle of the Barnet schools this week. 

I've just learnt all I need to about Redfoo from Wikipedia, but the audience was given an education of sorts by a group of young men with learning disabilities, who were determined to compete just as much as the other acts from Barnet's schools. 

It was, of course, another "if only I'd known on the day he was born" moment. It was empowering - and to witness those parents, who don't have a child with a learning disability, cheer their lungs out - was just as it should be, but it was, all the same, fantastic.

LMFAO have millions of You Tube hits, and it felt like the noise of their entire fan-base in the Arts Depot this week. It was joyful to watch as Stan and friends brought the house down. 

Friday, 10 January 2014

Catriona's daughter's disabled. I'm sorry, I don't find Catriona "inspiring".

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. 

Wednesday, 25 December 2013

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