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.

Recognising Fathers project

The good people at the Foundation for People with Learning Disabilities have asked me to say a few words about my involvement with their Recognising Fathers project in 2006. Here's the blog that's now housed on their website.  A lot of it is stuff I've touched on before, but I think it's an important issue. The picture was taken back in the day...

Why I'm delighted Stan told me to leave the room this morning

Ten years ago yesterday, Stan had his first heart operation. We didn’t know at the time that he’d need more than one. On 21 May 2002, things were looking good; but as the week progressed it got more and more desperate. 

And on 30 May they had to take him for more surgery. I can remember them wheeling him off as the ink dried on the consent form. So, it’s bringing back strong memories. There’s not a day that’s gone by in those ten years when I haven’t thought about the surgeon, the anaesthetist, the nurses, the consultants, the registrars, the people on the front desk and everyone at Great Ormond Street Hospital for saving my son’s life.

I remember standing at the gates of GOSH ten years ago thinking that I would do anything for him to just be alive.

So, this morning, I go into the lounge and he's listening to the ipod. He looks up and shouts: "Go away; party". And I get to look at the big picture; how I stood at the gates of the hospital and dreamt of a moment like that.

If you want to know more of how I felt at the time and why James O’Connor is such a superstar, read this, from “May 2002”

Down's Syndrome - The Biography - Book Review

Down's Syndrome - The Biography. By Chris Nancollas. (Darton Longman and Todd)

This book needs a re-write but don’t lost the passion for human rights, Chris!

In saying that I couldn’t put this book down, I also think there are three huge areas for improvement. This short book is good if you read it in context. For people who are quite used to the idea of a family member having Down's, this is a great read. But I’d suggest that new parents shouldn't read it.

Why the contradiction? Well, the three troublesome areas may mean that the good ideas in the book get clouded. That’s a shame.

What did you say?

Firstly, the language used makes you feel like it was written in 1972. I personally don't have a problem with this. But Chris Nancollas needs to be more sensitive to the fact that many do. I've spoken to a parent who says that the book has really annoyed him because the Down's Syndrome Association has worked hard to get writers and journalists to use the correct phraseology. Let's not get into that argument here, but Chris writes the book in a very medical way; our kids are “patients” and “Downs children” who are “sufferers”.

And it's such a shame because Chris is so passionate about Down's Syndrome and human rights, and so excited about the big advances that have been made in our children’s lives. He calls learning disability the “Cinderella” of disabilities. The passion’s there. But some readers may not get that far because of the words used. I think it was good that he talks about idiots and mongoloids, because that was the language that was historically used and he does recognise this. It’s not those types of words that are challenging, because he places them in historical context.

Keeping it real

Secondly, he doesn’t mention people’s actual stories until near the end, and even then there’s a reliance on materials from several years ago. It would be brought to life if it showed a real day in the life of a child with Down’s living in 2012. It's all in the third party as if people with Down's Syndrome are a concept rather than real people. Even when he visits a local special school, there's no attempt to talk to the children (or their parents) who are benefitting from the excellent education he describes. How about the book starting by describing a visit to the swimming pool and Macdonald's, just like Stan and I did yesterday. Rather than being a prescriptive account (and I know Chris doesn't want it to be) that approach would highlight how people are individuals, a point I know he wants to make.

Computer literate generation

The third area is about technology. I LOL’d when Chris said that some advanced schools use tapes....Tapes! This is 2012 and Stan has an ipad, for goodness sake (which, incidentally, he uses in school as part of his lessons). He doesn’t sit there glumly looking at TV like a stereotype. He’s flinging between Angry Birds and You Tube and knows far more about computers than say, my Mum. To ignore this great resource that our kids are mastering, and which is massively improving their development, is a big disappointment.

The good news

This is all a shame because the book is really good. It shows how far society has moved on since the 1960s; things have got a lot better and in the old days they were a lot worse so it’s disappointing that these other issues deflect from that powerful message. I realised this early on, so I read it in context. That’s why I think it’s fine to read it if you’re well acquainted with DS issues, but I know that I’d have been a new parent reading it, it would have made me extremely depressed.

The most fascinating bit was how, in something like the 14th century, Down’s Syndrome didn’t use to be a learning disability. That’s because the majority of people were poor and most didn’t have access to anything to learn. And people often didn’t look different from each other because everyone’s face was ravaged with scrofula, small pox and other horrible diseases. Nasty.

There’s an excellent chapter on how the asylum system was built up, with good Victorian intentions, and why it was best to subsequently dispand it. And there’s fantastic material about how mental health conditions have historically been linked with learning disability, with awful results. Chris also talks about how the Nazis killed people with learning disabilities, and how Enoch Powell was an advocate for closing asylums.

So please read it, but, in context. I certainly found the subject matter thought-provoking. I know that there are other books that detail the history of Down’s Syndrome. With some rewriting this could be a standard text, and then perhaps new parents could be pointed towards reading it.

R Word video update

five kids came up to harry yesterday and said they'd seen the video and pledged not to use that word again.....See below

The Kids take on the R Word

The other day my eldest said that he hears the R word quite often. It's fairly widely-used in and out of school. We had a talk about this and decided that a family-made video may change some hearts and minds. Here's the result made on Saturday night with some great input from my niece - downsdad (c) productions presents - The R Word ain't cool........

Down's decade - Stan turns 10

Why I enjoyed dancing to the Weathergirls on this BBC Ouch blog