What it's like to be the parent of a child with a learning disability. The blog was created in 2005 and discusses anything to do with Down Syndrome

Thursday, 15 December 2011

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.

Sunday, 20 November 2011

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.

Monday, 7 November 2011

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.

Monday, 26 September 2011

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

Tuesday, 20 September 2011

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.

Friday, 26 August 2011

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

Wednesday, 20 July 2011

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.

Sunday, 15 May 2011

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.

Wednesday, 13 April 2011

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.

Tuesday, 22 March 2011

GOSH I've had a hug

It’s a crazy, mixed up world. We teach Stan to say hello to strangers, shake hands with friends and he can hug close friends and family. So we’re at Great Ormond Street and he rushes up to a nurse and squeezes the life out of her. She says: “That’s the first cuddle I’ve had since I started working here.” A unique and special moment; but it was WRONG in the great ‘to hug or not to hug’ debate. Oh well. Bigger picture? His heart check went well. The nurse’s moment of job satisfaction is a reminder that the people who work at GOSH really are everything you expect them to be. Lifesavers in every sense of the word.

Monday, 28 February 2011

I can't get it out of my head

What’s your ear-worm? What song goes round and round in your head? Can it be different every day? It certainly can for me. Cheryl Cole hunts me down more painfully than her ex with an air gun.

Hang on Down’s Dad...What’s this got to do with Stan? Well, firstly his particular penchant for playing Cee Lo Green (just the first three tracks mind) is currently a bit challenging. But also, this column is about extended family members. So it’s time to talk about Down’s Dad’s Dad.
Dad died suddenly in 1997 and I hadn’t quite had that ‘full realisation’ moment. I’d done a night shift at a radio station and was driving home. On to the radio came Robbie Williams, singing ‘Angels’. A truly awful song by a man who I should naturally despise. This is because of his love - and financial commitment - to my football team’s local rivals. But it got me. Then and there at 0530 in the morning and it’s stayed with me since.


If only my ear-worm was something I was proud of. But life’s not like that. It’s all confused and strange. A bit like being the parent to a disabled child!

Friday, 18 February 2011

Lauren Potter from Glee

Lauren, who stars in Glee, and her mum, were on TV this week in the USA to talk about the anti-bullying campaign.

Lauren is a total hero.

Thursday, 10 February 2011

Nine years old today

Stan opens his presents this morning ~ and looking rather disappointed ~ says: "Ipod". He wanted a replacement for the two he's lost. He took it well that he's not, in fact getting a new ipod. He is getting other stuff and will no doubt carry on losing his Mum's phone.............
Happy birthday Stan

Sunday, 6 February 2011

Some very anglo saxon words

Swearing at an unknown French man in the street isn't perhaps the most sensible thing to do, but it's only one of three notable incidents at New Year.

Firstly, though, this column isn't just about Stan. As it says on the title it includes the extended family. We were in Macdonalds in Amiens - we take them to the best places. A few minutes before some anti-MacD activitsts had set fire to toilet seat, but they got off lightly. In our party there are six kids, three of whom are teenagers - and they started singing really loudly. The security guard came over and told us off! Actually it was quite a moment of pride.
Then there was the time a day or two later when Stan got the football, INSIDE the bistro and toe-punted it. As it made its way to table numero neuf, I started thinking of the new bill we would be presented with. It lobbed downwards toward plates and glasses all nicely made out on a table and it hit the side - and bounced back into Stan's arms.

Oh, yes and the swearing. A man mocked Stan in the street. So I marched after him, tapped him on the shoulder and employed some words that Asterix and Obelix may have blushed at. Two of the teenagers in our party saw this and secretly I think they were proud. (As much as they can be of an embarrasing uncle).

My wife doesn't know that I took it upon myself to pursue this man down the street and hurl abuse. Please don't tell her - or then you really would have to cover your ears.

Thursday, 20 January 2011

Children's disability back on the agenda


Earlier this week, when she posted on Mumsnet, I bet Riven Vincent didn't expect to be all over the news today. But it's captured the imagination, not least because Riven met David Cameron in the election. In fact, it was another meeting that caught the headlines. Please think about Riven and so many other people who have children with disabilities. This is an important moment in looking at ourselves and considering what sort of society we are. But don't take my word for it - look at my friend's blog