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

The most wonderful time of the year

It was another “If I’d known on the day he was born” moments this week, at the school panto. Last year, Stan got up on stage and performed, without help, for the first time ever. This time, he was doing all the movements, like it was second nature. I said to the head: “We're so glad that he's had these opportunities to get up on stage, just like everyone else”. At one point, two girls grab him by the arms, give him a twirl and they all carry on. No big deal made about his disability. Just the "wow" moment that any parent should feel when they see their child on stage at Christmas. Just like we did when Stan's brother was an ugly step-sister a few years ago.
We’re so grateful to Stan's learning support assistant and two mates who sat near him in the show.

His mates guided him onto the stage, but once there, it was his world.

Sarah Gregson

Stan's learning support assistant, Sarah, died on 10th November.

Sarah Gregson was one of a kind. She's pictured here in 2007, with Stan.

Yes, she never had a bad word to say about anybody; yes, she was incredibly patient with Stan; yes, her eyes lit up whenever she described things that he did. But there was more to it than that, wonderful though those qualities were. Sarah Gregson was instrumental in helping to steer the way that Stan's school deals with special educational needs. In many ways, Stan's been an experiment, and Sarah was one of his most trusted lab technicians.

Sarah was one of the few people who really knew Stanley - and knew how amazing and also how difficult he can be. She made lovely resources for him and was always eager to learn new ways of learning and take advice from others. The other professionals involved with Stanley always told us how impressed they were with Sarah and her dedication to Stanley.

Sarah made sure that Stanley was accepted and included in school life and it is testament to her that he has been so successful and has so many friends in school. Sarah also welcomed Stanley into her home and Stanley spent time with her daughter in the school holidays. We came to regard Sarah as part of our extended family.

Some of the above I was able to pass on to Sarah's family at the funeral. We want the family to know that, on top of the love she had for her family, she had a special place for Stan. But I want to stress that it was a professional friendship that she deserved to be very proud of.

We will miss Sarah's humanity. We'll miss her laughter. We'll miss her special friendship with Stan and the things she used to teach him. But mainly we're just so glad that Stan got a chance to meet and work with Sarah. We're crystal clear that without Sarah's input, Stan's time in mainstream education wouldn't have been so successful.

As Stan grows up, we'll remind him of this often.