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. 

Sunday, 20 September 2015

Going swimmingly ~ and it's so tedious

I'm bored. Bored of Google News alerts that tell me that it's amazing that people with Down's are doing ordinary things. I'm looking forward to a day when my alert feed doesn't tell me about a model who has Down's, because it's become the norm. The same goes for people with the condition going to college, working and doing other so-called normal activities. Ask Stan's brother or his cousins or the kids that went to his primary school. They're just used to having him around and let's hope the rest of society catches up really quickly. 

But there's work to be done. Recently Stan's started doing length swimming at the pool. A parent's dream because I can imagine him at the Special Olympics and I can be Down's 'competitive dad', like the character from the Fast Show. OK, he swims a length, gets out, runs down the side of the pool, gets told off by the staff member who's looking increasingly worried, belly-flops into the pool and swims the same length. Today he had a friend (who has Down's) and two other friends from his primary school, and we were all swimming lengths, with Stan. All very normal. 

If he wins a medal at the Special Olympics, I don't expect to see it on my alert feed because it's special but it should be very normal, if you know what I mean. And that would be very boring. It's much better to be Competitive Down's Dad, pacing up and down the side of the pool, screaming instructions. OK. I don't do that. We're very much at the 'doggy-paddle to front crawl' stage of the metamorphosis. But today there were no high-fives for finishing a length; just a normal feeling for a dad who wants to see his son win a race - or just take part - one day soon. 

Thursday, 25 June 2015

Stan's not going to Glastonbury...just yet

I want Stan to mud-dive, stay up all night and have the odd beer. 

In a field. 

I want him to go to Glastonbury or any other music festival. 

But, you know: he's only 13. His brother's first festival was Reading when he was 15, and he's typically-developing and even then I had to chaperone. But one day...

It'll be 'cometh the year, cometh the Stan'. He'll probably be there with me, providing support - Down's mum doesn't do festivals. She's very civilised and sensible. 

But what about people with learning disabilities that want to rock out, or in the words of The Happy Mondays's Shaun Ryder: 'Reach for the stars, brave ravers.'

Serious message. Paul Richards (right) acting silly with friend at Glasto

I do hope that my friend (pictured) Paul Richards is being really silly at Glasto, because his message is dead serious. Paul is the organiser of two great music initiatives:
  1. Stay up late, so that people with learning disabilities don't have to go home at 9pm or whenever their carer's shift comes to an end
  2. Gig buddies, encouraging people without learning disabilities to team up with people who do, so that they can go to gigs together. Not as a favour, but so that they can enjoy the show on equal terms. 
Paul's at Glastonbury now promoting these messages.

Here's to a day (soon hopefully) which sees Stan rolling around in the mud at a festival...and no one bats an eyelid. (Well, his mum will be furious).

Sunday, 22 March 2015

Stan's a teen; and his own person

Stan's latest heart check went well, so why did they ask us to come back in 18 months, rather than two years? Cause for concern? No; it's because he's being sent off to the adolescent unit. Because he's now a teenager. Then, when he's old enough, he'll be discharged from Great Ormond Street and go off to another hospital. 

We've seen the same cardiac consultant since before Stan's operations in 2002. We send him and the surgeon Christmas cards. I said in my book that not a day goes by when I don't think of all staff at the hospital and thank them for saving Stan's life. 

So, the latest news is a challenge. He'll be off. Away from a children's-cardiac-unit-safety-blanket to somewhere unfamiliar. 

And it's such good news. In 2002 we couldn't think of this day coming. I've said before, that for the first year of Stan's life, Down's Syndrome was the least of our problems, because of his heart. And just now, Stan and I have discussed a range of options for tea tonight. He's having exactly what he wants. But the important thing is that we had the discussion. And he's 13. And he's his own person. 

I feel like we're moving into Phase Two. He now knows the difference between right and wrong. He won't always do the right thing, but at least he knows that he probably should do that right thing. 

It's just that as he grows older Stan needs supportive (and yes, firm) parenting. I've just been re-aquainted with a former colleague from the travel agency. I haven't seen her since 1993 but she found me on Facebook. She always used to laugh at my jokes. So I've cracked a few more on Facebook personal message. She shouldn't encourage me. I've always been a joker, so providing that firm and supportive parenting should be a doddle, heh? 

Especially as, while I'm writing this, Down's Mum is rightly pointing out that I should be attending to said parenting, as described above. It's probably a hopeless case. 

But I'll give it a go. Welcome to the teen years, Stan. 

Sunday, 1 March 2015

Down's with the kids - the book ~ Written and audio

“This is my brother. He can be cute; he can also be a little shit”. Down’s Bro. 

Written version from Amazon

Audio version from Audible - Instructions on how to download 

Down's with the kids: The life and times of Stanley Matthew Palmer. By his Dad. 

It'll take about an hour to read Steve Palmer's book about his son, Stan and extended family. Stan has Down's Syndrome and Steve's book is an honest account of life with this "endearing, infuriating, loving and frustrating" boy. If you’re a parent with a new diagnosis of Down’s, this book’s for you; when you’re ready. Because it’s warts-and-all; maybe you’ll prefer it that way. There's also the memory of a night in Cardiff in 2002 from this Stoke City-supporting family. From school days to holidays, from clich├ęs to relationships with siblings, Steve offers you family life - with a child with a learning disability - as it really is; hard work, worth it and at times, a bit of a laugh quite frankly. 

'On 5 October my sister in law gave birth to Cooper, a wee Downs baby. I want to be a support to them and a good uncle to Cooper. This book has helped me learn loads about a condition I previously knew nothing about.'

'Fantastic, no-nonsense insight to the highs and lows of life generally, but just with an added chromosome. Recommended reading for anyone - not just the family and friends of people with Down's Syndrome.'

'I read this in one sitting: I just couldn't put it down. I loved Steve's observational wit combined with his music and film analogies. Looking forward to him writing more.'

Wednesday, 25 February 2015

Down's with the kids now on audiobook

Down's with the kids: The life and times of Stanley Matthew Palmer. By his Dad. The audio version's out. See below for advice on how to buy it.

  • On your device (eg iPhone) - Download Audible from the App Store
  • Login with Amazon account
  • On a computer, go to these web address: 
  • UK audiences
  • USA audiences & all other countries apart from UK, 
    Australia, Germany & France
  • Australian audiences
  • Still on computer - Make sure you add 'individual book' to basket. Don't click '30 day membership' unless you want it
  • Next stage - Don't click 'save more' - Click 'Continue with regular price 
  • It will ask you to create your login using Amazon account password - Then you can click to buy 
  • On your device (eg iPhone) click on your library 
Original Kindle book:

Saturday, 20 December 2014

People with learning disabilities: Going to funerals and explaining death

Here's a cheery Christmas subject....But this week I was talking to a friend who works at the National Council for Palliative Care; and it reminded me that I've got strong views on this but have never written them down. Here goes.

In 1997 it was apparently discovered that 54% of people with learning disabilities didn't go to their parents' funerals. Crickey, I hope that stat has improved. You can perhaps assume that many of those people were adults with learning disabilities. Which makes it even more of a shock.

And what about the shock of not seeing a parent again, only for the rest of the family to cover up why that won't happen. In 2007 I met a woman who was organising a play by people with learning disabilities, about how they want to go to family and friend funerals. Powerful stuff.

But a quick internet search is a pretty depressing experience when looking at this issue. It's just a sea of confusion. I apologise if quality work has been done on this, but Google's not showing it. What's needed is a decent, accessible and friendly guide that demystifies the whole process. Of course it's a sensitive and challenging issue, but, as with many complex things in life, the answer mustn't just be to go for the apparent easy option. 

Where I work we've just put out a video about how people are told that a relative or friend is dying. It's about how the words used, and the explanation of how those words are used, can have a big effect. I also think it'll be helpful to people with learning disabilities and their families. 

And it's not just death and dying. The Alzheimer’s Society and the British Institute for Learning Disabilities have brought out a resource; it’s to help explain dementia to people with learning disabilities.

This can be handy for us as a family, because I don’t want to keep telling Stan that my uncle, who has dementia, is ‘ill’. We don’t want to shield Stan from things and attempt to keep him in a child-like bubble (it's all in the book).

Stan's Grandad died in 2010 and Stan was nine. He didn't go to the funeral. But I was close to lobbying for him to go. Nowadays, I'd want him to go to a funeral.

As Stan heads to adulthood, this issue is something I aim to keep on the agenda.