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.

Friday, 7 October 2016

I found my place in the Sun

I was a bit nervous buying the newspaper. I was pretty sure that Stan and I would be in there but newspapers can sometimes 'drop' items if bigger news comes along. So I got a copy of the Sun and our story was featured. (Printed edition below). 

The kerfuffle was started by actress Sally Phillips who asked on a BBC2 documentary: What would a world without Down's Syndrome look like? 

I found it fascinating, not just because of the stuff about Down's Syndrome. But Sally goes on to look at geneticism generally and how we're on the verge of being able to choose kids who aren't disabled, aren't ginger and are good at maths. It's just that kids with Down's on in the vanguard. You can't tell if someone in the womb will go on to have an autistic spectrum condition...just yet. But perhaps soon you will be able to and that raises divisive ethical questions.

When the Sun contacted me I saw it as a good opportunity to spread the word about Down's Syndrome. As a parent, it can be hard work but it can also be rewarding. 

Stan watched much of the documentary with us. He was interested to see other people with Down's on TV. And Sally's love of Olly, and her passion about the issue, made for a really good show. I wish there had been more on geneticism more widely. But it was a good effort and it certainly got people talking. 

Friday, 9 September 2016

Panic in the Tesco? Not really...

I was running up and down the aisles of the massive superstore - running but not panicking. I'd got the Tesco security guards to cover the entrance; I'd got the help desk to put all staff on alert. Stan had slipped away from me. He wasn't exactly missing - but he was definitely absent.

The good thing about not panicking is that you get to think straight. You swing a plan of action into being and you think about what you're doing. So it suddenly dawned on me that Stan likes to go to the Costa outlet which is situated at the back of the store. And there he was in the coffee shop, having pilfered a strawberry smoothie. Quite a relief but why am I so pleased with myself about this? The answer is that I did all the things I was supposed to do.

Of course, like in Peter Pan, all this has happened before and all of it will happen again. A couple of weeks ago Stan took off and the police found him. His brother reckons that, at almost 15, Stan has hormones raging through him and that when you find it difficult to express yourself, it's perhaps easier to take the path of least resistance; ie bugger off.

But, despite the fact that I lost my son with Down's and it was worrying, I'm celebrating a small victory. I actually nailed it by acting calmly. And then I took Stan around the store, getting him to apologise to various members of staff who had helped us. My advice to parents / carers in a similar position? Have a plan. Panic by all means. But the plan will help you to centre your thoughts.

Friday, 19 August 2016

Stan's holiday

In my book in 2014 I wrote that we'd never go on holiday with Stan again. Our last trip as a family was the dreadful holiday of 2013. But something amazing's just happened and I'm writing this because if you feel like giving up - when your child with Down's is trying your patience - I'm here to tell you that it might get better. Back during the horror holiday three years ago, I suggested that if you're going on holiday with your child who has a learning disability, then remember to pack patience and I don’t mean the card game. You could be returning with emotional baggage.

Laddo doing the Fado 2016
There are two reasons why I think that 2016 was a good year. One: Stan has grown up a bit. At 14 and a half we can reason with him. The place we just stayed in Portugal - if it had been three years ago, Stan would have smashed all the wine glasses. Now, he wasn't bothered. He was happier doing his own thing. Two: Arrangements. He had priority boarding to the gate and passport control, no waiting anywhere and that helped keep things calm. And he had access to his brother and cousin. In 2013, we were staying in a different place to his cousins. He hated that. 

So, we're bathing in the glow of a successful trip. Stan even danced in the square with a band. He wasn't perfect but we had a holiday. In 2014, I predicted that we would never have one with him again. So it's a great feeling. 

Thursday, 24 March 2016

Garth Brooks: Down's Syndrome freedom fighter?

Around 1993 I started listening to Garth Brooks's music. I even dragged Down's mum along to see the country singer at Wembley Arena. And just now, because Garth's not on Spotify, I was having a trip down memory lane via YouTube and I found this. I nearly fainted:
Garth Brooks: Standing outside the fire (1993)

Starring in this video is a young man with Down's Syndrome - Brandon - who takes part in a High School race. Now, these days, with social media, we're quite used to seeing people with Down's doing extraordinary (and ordinary - see previous blog) things. But how extraordinary was it to see someone with Down's starring in a popular music video in 1993?

However, Brandon, encouraged by his mum, spurns the Special Olympics to take part in the 'regular' race. His dad argues with the mum because he wants to protect Brandon from humiliation. The mum wants to push Brandon on so that he's not 'standing outside the fire', in the world according to Garth.

If that scene was in a music video in 2016 I wonder if there'd be an uproar. You see, the Special Olympics, 23 years on, has so much more status these days. It's not something that anyone should be ashamed of taking part in. Perhaps in the 90s it was seen as second best. Not any longer. 

But it's still amazing to come across this video. It's the first time I've ever seen it so, here in 2016, to look at this man 'standing outside the fire', and starring in Garth's video, has been fantastic. 

Thursday, 10 December 2015

How an incident in Mcdonald's ballooned out of control

Stan did something unspeakable in the Golden Arches. I mean, personally I was rather relaxed about it, but a little girl's dad certainly wasn't. It all happened in the kids' play area.
Stan in a quieter time, away from Macdonald's
More about Stan's burger crime in a moment. But first, allow me to expand on an idea: one of 'age-appropriateness'. The other day Stan and I went to a party, for adults with learning disabilities. Aged nearly 14, Stan now gets to go to this sort of thing. And it was such a relief. The DJ played songs that the teenagers and their siblings loved, there were no kid games and it was a really good afternoon out. The embodiment of age-appropriateness.

Now, Mcdonald's is also age-appropriate, but the play area in the corner certainly isn't. With an overhead projector showing images on the floor, kids can have fun running around stamping on puzzles or kicking an animated ball around. 

And Stan made a beeline for this area and immediately stole a little girl's balloon. Just the sort of thing we don't want him to do. And the more anyone objects, the more difficult it is to stop him. The girl's dad protested from his seat, in a rather pained way.

I'm sure his daughter is very precious. But he was making her, well...too precious. "Ooh, please stop him. STOP him." It was an over-the-top reaction and, on cue, Stan went as if he was going to stamp on the balloon. The dad got up. He started to dance around, shouting "STOP!". Stan loved it.

All rather unfortunate. But I also think that parents have some responsibility to react in a relaxed and groovy way when disabled people are around. This guy didn't. And what happened next made me so proud of myself. I actually used a line that I'd rehearsed, and I meant it. 

"Yes. It's the worst thing that's ever happened to you." That stopped all the nonsense and the dad shut up. 

So Stan and I went and got our meals and when I asked him where he wanted to sit, well, yes you've guessed it. Next to the disturbed dad. Our table neighbours stayed for ten more agonising minutes and then performed the walk of shame past us. And Stan, ever the gentleman, said, just they'd squirmed along: "Bye." He's very forgiving. 

I hope that guy was embarrassed. Because what did he really want? For Stan to make life easy for him and not be there? Would he have preferred it if we left? Well. News alert. We ain't going nowhere. And the daughter kept her balloon.

Stan might do some odd things. Live with it. Or you might find that a parent floors you with a prepared one-liner that sums up why it might be an idea to balance your anxieties with other's people's right to be present in Mcdonald's. 

Sunday, 1 November 2015

Can cook, will cook

Stan can achieve big things. He needs support; but the sky's the limit. 

I've decided that that's Stan's mission statement. And a show on TV at the moment seems to sum up that sentiment. 

Kitchen Impossible 

Michel Roux gives a bunch of disabled people a bollocking for getting their orders to the table late. He's supporting them to learn something of the catering trade and then apply for real jobs. And he won't take no for an answer. I love it. 

Contrast this, from Channel Four's Kitchen Impossible, with an incident on Friday: Stan tried to break into a van. He got as far as opening the door when the guy up on the scaffolding, doing the loft extension, started shouting down. I asked Stan to apologise, which he did. The guy in the hard hat then clocked Stan and the fact he has Down's and said: "I'm sorry. I didn't realise." I found myself blurting out: "Realise what?"

I felt bad about it later. The guy was only trying to help. But he's no Michel Roux. Yes see, he was immediately putting restraints on what Stan can do. At his age, he should indeed be in trouble for breaking into a van. 

And Michel, in the TV show, is clear that he's throwing down a challenging gauntlet. One guy starts off the show cooking his signature dish of a microwave curry. He ends up saying how proud he is to have moved onto real cooking. A young woman with Down's is given the scary task of taking orders out to customers. She struggles, but she makes it. 

Stan. In charge of his own breakfast...

We know one of the families who were filmed and they've confirmed to me that Channel 4 have been great with the stars of the show. 
But it's also the sentiment that I love. Just like Stan's speech therapist; she won't accept him producing eight-word-sentences. She's got him on 13-word-sentences. And then more. And then more. 

Yes. Of course it can a challenge being a Dad to Stan at times. He'll break into the odd van. But when you know that your expectations are soaringly higher than that, that one day he could apply for a job in catering - or anywhere - then it helps you to centre you thoughts and get on with it. 

I'll say it again:

Stan can achieve big things. He needs support; but the sky's the limit.