What it's like to be the parent of a child with a learning disability. The blog was created in 2005 and discusses anything to do with Down Syndrome

Monday, 24 July 2017

The book, the audiobook & the podcast

Down's with the kids - The book / Audiobook / The podcast


What's testing for Down's Syndrome got to do with Baywatch?

In Italy last week, a young man called Valeri Katoya saved a ten-year-old girl's life. The 17-year-old is reportedly a champion swimmer. The report looks like it's been translated so you don't get much information. But Valeri did save this girl's life. 



If this had been reported it to the English-speaking press, no doubt someone wouldn't have been able to resist the urge to describe this as a heart-rendering tale. If you've read any of my stuff before you'll know I have strong views on people prescribing an act of kindness / bravery / endeavour as 'inspiring' just because they find it so. 

And this was much more than heart-warming. He saved her life. And it made me think: we don't know the circumstances of Valeri's birth but let's assume that his parents might have been told that their baby wouldn't amount to much. Let's then assume they didn't go ahead with the pregnancy. Not only would Valeri not have gone on to be a champion swimmer and a lifesaver worthy of Baywatch, but that girl may well not be with us.

The next time someone discusses testing for Down's Syndrome, perhaps chuck Valeri's story into the mix. Because sometimes the value that we bring to life, as humans, is only realised in an unexpected manner. 

Related blog: How Stan contributes to society

Sunday, 30 April 2017

Not just doing us a favour: why Saracens get it

Stan goes to Saracens once a week; not to play rugby but to do cheerleading. So on the last home game of the season Stan and two other young men (who go to the club and play rugby) were asked to come and hand out hampers to the people in the boxes and to give speeches to the banqueting tables. We explained to fans what the Saracens Sport Foundation does in the community. The three young men also took the ball on the pitch before the game kicked off. 

Keeping the teams waiting 
So I got to say the same thing to fans eight times and on each occasion I honed it. By the end I was putting together something more-or-less coherent and it goes like this:

Not just doing us a favour

I sometimes get irked when I see that a person with Down's or another learning disability has scored a touchdown or done something endearing like dance along to a busker. Not because they're doing it; all power to them. No - I get disappointed because the press report it as if it's some amazing event and often say it's 'heartwarming' and 'inspirational' when the person involved couldn't care less whether it is. 

So I told the Saracens fans, as they tucked into lunch, that Stan, Mark and Ollie weren't speaking to them and taking the ball on the pitch because someone was doing them a favour. They weren't the recipients of some kindly act because they suffer so much in their lives. That's an old-fashioned and patronising take on this kind of thing. 

It's a relationship

No. I told the rugby fans that in the same way that Saracens are putting something back into the community, Stan, Mark and Ollie are doing so likewise. It's a symbiotic relationship that I know Saracens Sport Foundation 'gets'. The fans yesterday met three young men who are great advocates for showing that people with learning disabilities have so much to contribute; by playing sport, by learning dance moves; by teaching tolerance and understanding; and by standing up and telling people about it. So they weren't there to make up the numbers in a condescending way. They were there to be part of a success story. 

See Stan, Mark and Ollie on their big day >>>

Sunday, 23 April 2017

Talking to the media about your cause: a survival guide. Podcast #5

Do you wish you had the confidence to speak to the media and raise awareness for your cause? 

Listen on Soundcloud >>>

Listen on YouTube >>>

For this edition of the podcast I’m sharing some of my tips on talking to the media. I used to work at the BBC and elsewhere and also have done many interviews raising awareness about Down’s Syndrome. But you don’t need all that experience. You can do it too. I speak to a care leaver who’s done a few interviews – and a film-maker, who helps you with what to do when recording equipment’s thrust at you. Print / online / radio / TV - why shouldn't it be you telling the world your views? Down's with the kids - the blog and book, can be found here downswiththekids.blogspot.co.uk/

Music is kindly provided by www.bensound.com/royalty-free-music. Thanks for listening.

Tuesday, 21 March 2017

Not in a huff: Down's Syndrome awareness week

We're really pleased with the filming and editing that the Huffington Post have done. They've made a film about Stan; they filmed him and other members of the cheerleading group at Saracens rugby club. It was released today to coincide with World Down Syndrome Day and Down's Syndrome Awareness Week. 


Meet Stan, the teen proving Down’s Syndrome doesn’t stop you living life to the full >>>

The film-makers were careful to use words that didn't offend or patronise, like 'suffering from' Down's etc. But also the film gives a good indication, we hope of life with Stan. It can be a challenge, but it's as busy as the cheerleading session. 

Thursday, 9 March 2017

"It's OK to say 'retarded'" says comedian Louis CK. And then he makes his big mistake...

Some comedians use the term ‘retarded’ and they’re currently headlocked in a battle with the R Word campaign. The latter don’t want people to use the word. But comic Louis CK says that it’s OK to employ it. He justifies it in a YouTube video - and I have to warn you that even if you’re not easily offended, this is a tough listen. (Warning: Offensive swearing)


You hear a recording of a young man with learning difficulties, who says he's upset about hearing the R Word. Louis CK responds: “I doubt that he was offended by the word. I think that somebody told him to say it.” 

Is this a persuasive argument? The older I get the less I want to see the world as 'prescriptive' - and so not everyone has to be offended by the R Word, just because someone tells them to. And Louis CK makes a case for saying that the word has been hijacked by the families and carers of people with learning disabilities. He says that people don’t mean to offend those with learning difficulties when they use ‘retard’. 

"I don't mean you"

However, the suggestion is that people with learning disabilities couldn’t possibly understand the nuances and aims of the campaign to tackle the use of the R Word. Let’s sum up what Louis CK is saying: “They wouldn’t possibly understand.” And I find that deeply offensive; it's an assumption and a mistake. Another comedian on the YouTube recording says: “He doesn’t understand what he’s saying.”

Some people don’t have the capacity to understand. But many do. And so it's offensive to those people with learning difficulties who are genuinely troubled by the use of the R Word; because they’ve worked out for themselves what they believe is and isn't offensive.




I appreciate that Louis CK's at least tried to justify himself. But I care less about his use of the R Word than his lazy assumption that it won't offend people because everyone with intellectual disabilities is the same; ie unable to have a view on this subject.  

When is society going to realise that people with learning disabilities have opinions, thoughts, aspirations, hopes and yes, feelings? 

Saturday, 4 February 2017

Stan's 15: why completing the crossword became important on his birthday

Happy birthday 
I was stuck on the final clue: 'Heated to destroy bacteria'. 11 letters. About five times a year I complete the i crossword, without cheating. And here I was, about to 'complete-without-cheat', on Stan's 15th birthday. But there was no way I was going to get this fiendish clue. And then I had an out-of-body experience. 

First though, going back a decade-and-a-half ago, when Stan was a few months old, we sat by his hospital bed willing him to come back to us. Down's Mum spent the whole time egging him on to recover from two bouts of heart surgery. Breathing life into him. Willing him on. 

And, 15 years later, here I was on the Piccadilly Line, and I suddenly realised that I had to get this clue. I could do it. I could will it. And I did it. And we did it in 2002. And we're just so grateful that Stan's in our lives. Happy birthday mate.