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..............

Why unlimited broadband is like Down’s Syndrome

So I was walking down the road, thinking: “I bet they've cocked it up. I BET BT have not installed Infinity properly.” And as I arrived home, I found out that my prediction came true. It turns out that our phone line is now dead and the computer developed a fault so we can’t access it wirelessly. You can plug a wire in, but that’s not suitable to modern family life. And I lost it. I felt terrible about abusing six different members of BT staff on the phone (on the mobile - remember, the land line is OUT). When I’d calmed down and apologised to the family I felt myself saying: “You’ve got this out of perspective; there’s a famine in Africa, a phone-hacking scandal threatening the establishment, and that damp patch on the wall isn’t going to mend itself”. It was no good though; I still felt in a rage about it.
Then I realised what it was: I wanted everything to be perfect. Perfect fast speed, perfect unlimited broadband, especially as Stan likes to go online a lot and the internet is a brilliant tool for him. Then I thought that perhaps it’s OK to sit there with a wire plugged in the back. Doesn’t that just sum up our lives? We have a computer with a wire coming out of the back, when everyone else seems to be wireless. And I actually quite like that. We're surrounded by imperfections. This morning, Stan ate a packet of small sausages and didn't feel the need to apologise. Yet a few minutes later he pointed to the wifi to see if it was working yet. So he's a thief - and a computer genius. Life in our house is imperfect, with a wire sticking out of the back.
There’s been controversy in the USA about someone describing Boston as a city that “suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything”. And there’s been strong responses, including this great one. But I’m not too offended (alright, I am offended by the second half; the “ruining” bit). But what if Boston had an extra chromosome and it was all the better for it? We should embrace non-perfection.
Thanks. I feel so much better.

If someone uses the word 'retard' - send them this

http://www.youtube.com/watch?v=T549VoLca_Q&feature=player_embedded

The FA Cup final and Down's Syndrome

It was an emotional day at Wembley yesterday for a number of reasons. Singing 'Abide with Me' took me back to my 16 year old self who dreamt that one day he'd get to go to the FA Cup final. Yesterday, despite the result, I was there, with my brother-in-law Andrew, his brother, and two other friends. And I burst into tears for the hymn that is traditionally sung at 2.50 pm. (I didn't cry when Stacey Soloman sang the national anthem, but I could have if she'd butchered it much longer). 

Stanley Matthew Palmer (for non-football fans, Stanley Matthews was a famous Stoke player) was there in spirit, as was his Arsenal-supporting brother.....because this was the FA Cup final and football isn't more important than life; it mirrors life. I wrote in 2005 about the dramatic events of May 2002. 

One of the delights was seeing a Stokie with Down's walking up to the ground, just as Wembley Way ended. He was so excited. I know that his family was so proud about the day and about the man's presence there.

I'd like to send congratulations to Manchester City for their performance and their victory. But I'd especially like to congratulate those Man City-supporting families who include someone with Down's. 

And thanks go to a very special person for making it all possible with the tickets. You know who you are. 

In many ways yesterday, our family also won.

People with DS being 'let in' over the world

Great new video here with messages about how people with Down's should be included, around the world.

A new symbolic campaign - people with Down's knock on doors in the forty-five countries that are featured.

Here's the list