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.

1/2 Marathon update

Two hours, 15 minutes and 39 seconds. OK, the picture looks bad. I was multi-tasking, uphill. 

I do hope that anyone working in maternity and midwifery services will look at the excellent page about training - to know what to do when a child with Down's is born - Tell it Right Start it Right.

It's Royal College Of Midwives (RCM) registered. 

"I feel much better prepared to provide information and support regarding Down's syndrome."

1/2 Marathon - Don't pay me - but click this

TELL IT RIGHT, START IT RIGHT

It has to be said that the way the hospital where Stan was born didn't deal with his Down's Syndrome diagnosis well.

He's 10 now so I have no idea what it's like for new parents these days - I hope it's better than our experience - but in fact I don't have to hope, because there's a great training scheme for maternity units, midwives, ante-natal staff  and anyone involved in bringing children like Stan into the world.

So I'm running a half marathon on 28 October and I'm saying "Don't pay me anything; just go to "Tell it Right, Start it Right" - and get as many people who work in maternity to do so, in case they feel they could do with this fantastic training scheme from the Down's Syndrome Association. It's accredited by the Royal College of Midwives and in the last year, over 350 staff have been trained up. Staff are given up-to-date, accurate and balanced information about living with Down's syndrome in 2012, along with the vital issue of how to improve the way that parents are told that their child has Down's, or if they find out during pregnancy, will have Down's. 

We were told in a very poor way and left to cope. But that experience only proves that specialist training is sometimes valuable.
 

So, do pass the web page onto any maternity staff you know of. Let's see if we can get lots of page hits for the Down's Syndrome Association's training page. I'll run to that...........

down's dad's down time

I looked up this morning and smiled at a fellow passenger. We gave each other a smug look, because we were both reading the same paper; one we'd bought, not the freesheet that's given out. Then I realised I'd seen the same guy every day this week, because I'd got the same train, in the same carriage, every day. Stan's been on the school trip and I've been able to spend quality time with his mum and brother, catch up on my sleep, watch some TV, go out, and spend more time at work. All the things that I imagine I'd do if Stan didn't have a learning disability. But I can only imagine Stan putting his hand to his mouth and saying, as he does, "boooooring". I've become a boring old fart. And I've loved every minute. So he's on his way back, and all I can say, is thank goodnesss, because Stan can sometimes bring chaos, and I hope that's keeping me a little younger. Next week, if I see newspaper guy, I'm going to ignore him.

Will it all start again on Monday?

Thanks go out to Stephen Adams at the Daily Telegraph. He (quite rightly) took a broadside from a mother about his use of language when describing our children, especially in relation to pregnancy testing. Stephen's reply is so good and so thought-through, that I think he would have done it any time, not just because of what's going on in East London. 

But isn't it interesting about how everyone's being very well behaved during the Paralympics? Even Jimmy Carr, well known for punchlines such as "**** off, you retard" has been on the Last Leg show on Channel 4, desperately trying to claw some credibility with his new-found disability credentials. He didn't need to say he's ashamed of himself. I saw him being ashamed of himself.

So, my big question is: Are these people just biding their time and it'll all start up again after the closing ceremony on Sunday? People being lazy, cruel or unhelpful about our children. But let's hope that one Paralympic legacy is that the nation remembers how disabled people, including those with a learning disability, made us all feel proud. And not from a patronising sort-of-way; but from a "time for Murderball Rugby, do you want some?" sort-of-way.

Devine, Weir, Storey, Simmonds. The names trip off the tongue and a few days ago no one had heard of them.

And here's Stan at the Paralympics on Monday. He saw the Weir-wolf pick up his second gold. History in the making.