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.

We need to talk about Ricky

In the mid 1990s I tried my hand at stand up comedy. I was pretty awful but there was the odd gig where I did OK. So who am I to criticise comedians? Well, let's compare Frankie Boyle and Ricky Gervais. The former seems to be downright offensive - he just said that our kids all die early and have pudding-bowl haircuts. He never responds to requests to discuss his comments, including Jordan's regarding her son Harvey.

But Ricky is happy to get involved. He did it last year when he called Susan Boyle (no relation to Frankie) "a mong" - but then justified his comments. But for some reason, his latest use of the word, a couple of weeks ago, on twitter, caused much more interest from the press. Ricky says:
'The word mong means Down’s Syndrome about as much as the word gay means happy. I never use the word mong to mean anything to do with Down's Syndrome.' Read more here

There's a fascinating article about Gerry Sadowitz, who has been known to offend even the most open-minded of his audience. But he makes the point that comedy needs to be thought-provoking. He says of Frankie Boyle: "He'll write a joke, or someone will write it and give it to him, and he'll do it without any thought."

But is it good enough to say that Ricky's more off-the-hook than Frankie Boyle, just because he's prepared to talk about it? I've spoken to people who say "no" - because of course he must have known what the reaction was likely to be - and so he should know better. They feel that RG knew exactly what it would do for his career.

For what it's worth, I think RG's attempt at humour is a bit tragic because he's trying to be down with the kids (no relation to this column). I heard the word 'mong' used in the office about six years ago, with the same defence used by RG, when an eyebrow was raised. It could be that he's being 'very 2006'. Is RG a man out-of-time?

I didn't have a child with DS when I was doing comedy but I'm sure that I never stooped onto this territory. On the other hand, I want comedy that challenges. That's why that Family Guy storyline was so brilliant. And although I see what Ricky is trying to do, I'm just left thinking that, instead of being this great, cutting edge comedian, he's ended up looking a bit sad.

3 tips on staring - Video blog

Does your child get stared at?
Here's my three tips on how to cope - in a video blog. A vlog

Why Stan should meet Bruce Forsyth

Stan chucked the alarm clock across the room and it shattered into bits. It still works but is held together by super glue.
It struck me – why not do a sort of Generation Game in reverse - ie we don't get to keep hold of any of the stuff – and name, in one minute, all the things he’s broken. Here goes:
· Plasma TV
· Sofa
· Three ipods
· His cousin’s camera
· Lampshade (frosted glass)
· Cuddly toy (ripped the head off – OK, I made that one up for artistic licence)
· Threw ice against the car when it was snowing, leaving dents
· A pair of earings (like two of the ipods, they went flying over the fence next door)
· Photos ripped

There’s more, but I give up.

Didn’t he do well?

And why did I do this to myself? Well, it’s difficult at times to rise above it all and think about how I felt nine years ago standing outside Great Ormond Street wondering if he was going to make it. In that context, a few things smashed can be laughed off. I can afford to guffaw in the face of broken things.

We had a note in his home-school book the other day. It said “Stan had a good day.” The items above; several hundred pounds. The comment in the book; priceless.

Good game. Good game.

Holidays and better days

As the rock flew towards the woman, several thoughts should have gone through my head; why did we come to this beach when Stan hates it?; will the rock, picked up from the seabed by a very unhappy boy, cut her forehead or knock her out?; when can we leave? But I had no thoughts. I was rigid with panic.

I want to talk about two incidents that show the two sides of our Stanley. How he can prove the critics wrong and put in a star performance and how he can push us to the bring of prosecution and hospital bills.

So, the good news or the bad news first?

I usually like to get the bad news out of the way, but, if I do, you won't be teased into reading the good news. Which was amazing. My colleague Nasa Begum died in May and for religious reasons her commemoration wasn't until July. It was held at the Graeae Theatre in East London, famous for promoting arts for disabled people. So I thought it may be a good idea to take Stan. Stan and Nasa never met, which is a pity, because they would have made a fantastic combination.

But I was nervous because there were speeches on the menu and so I planned to "show and go" just in case he only lasted 20 minutes. But he was amazing; he sat through all of the speeches, in front of my colleagues. He marvelled at the Bhangra dancing and then did a quick show himself. And he didn't hit anyone, throw anything at anyone or upset anyone. He was amazingly behaved for three hours. It was a special moment for me as I was relieved that Nasa's memorial wasn't disrupted. It was important to take him. Nasa always used to ask me about him, with a glint in her eye.

So when we were on that beach in France, I couldn't help thinking of how well he'd behaved at the theatre. He hated the beach with a passion but his bro wanted to go, so we were trying to please all the people all the time. (Instead of "keeping it simple" - learning disability holiday rule #1). The rock didn't hit the woman. It got mighty close - yet she didn't even see it as she was distracted before the near-moment of contact. Stan knocked a two-year-old over; he found the man on the beach most likely to react badly to having sand kicked in his face - then kicked sand in his face. Everyone was staring and in the end we were up and off to a safer destination. Stan's bro was compensated handsomely.

Why the change in behaviour? The Mrs reckons it's because at Nasa's do, he didn't know if he was ALLOWED to misbehave. He was out of his comfort zone and so....behaved. On the beach, where we've been before, he was acquainted with all the big red buttons he could press.

The beach we can leave and never ever ever go back to. Nasa's memorial is a happy memory and I hope that Stan was able to add a bit of spark to proceedings without trashing them. I can hear Nasa laughing her head off now..............