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.

Thursday, 9 October 2014

Finally: Down's with the kids - the book

"How long have you been writing it?"
"About five years"

In truth, my answer to that question wasn't totally right. I've been chipping away at it for years, but Down's with the kids: The life and times of Stanley Matthew Palmer only really kicked into gear this summer. It was July and I was typing on the laptop on bus then tube then bus then bus then tube then bus and before I knew it, I was half way through and there was no turning back. There's even a bit in the book where a kind woman gives up her precious Metropolitan Line seat for me as I was typing standing up. It was a nightmare and at times I had to stop being Down's Dad to write about being Down's Dad. 

And on Tuesday I self-published on Amazon. That took some research. (Biggest tip is to continually preview it before you're 100% ready)

But if one parent with a new diagnosis of Down's reads it, then my work is done. I was motivated to write it partly because when you find out your child has Down's or your future child will have Down's, it can be a lonely place. I hope it helps. 

Saturday, 13 September 2014

And then you go and spoil it all by saying something stupid like the R Word

I was two-thirds of the way through my fourth Douglas Coupland book when it happened; I was really enjoying reading this author and the way he speaks to me (Man). And then he went and spoilt it all by doing something stupid like using the R Word. 

What happens when an author/artist/performer you're enjoying, suddenly says something that makes you feel uncomfortable because of what's happened to you personally?

I'm opposed to blanket bans on certain words; I am however, concerned about people not thinking before they use them. 

Now, Coupland's use of the R Word in Generation A is through the mouthpiece of a particularly unsavoury character. But I wonder if Coupland's done enough to let the reader know that this is purely the character speaking; I worry that people will read it and go on to assume it's OK to call my son a retard. Am I too sensitive?

I thought the film The Descendants was a cracker but there’s an awkward moment. Here it is reproduced from this blog:

Clooney’s character Matt says, “You are so retarded.”
Nick Krause’s character Sid replies, “That’s not nice. I have a retarded brother.”
Matt looks shocked.
Sid goes on to say, “I’m just kidding. I don’t have a retarded brother. Sometimes when old people and retarded people are slow I just want to make them hurry up.”

Sid is an interesting character and I think the writers were making a point, a point better made I think than by Douglas Coupland in Generation A. But that's just me; perhaps Coupland would be horrified that anyone thinks he's being lazy with his use of the R Word. It's just that I was left unconvinced. 

A great blog on the Babble website says that we, as parents of people with learning disabilites, aren't politically-correct word police. Author Ellen Seidman does however, say: "This isn’t about a ban (on the R Word); it’s about raising the respect bar, and getting people to consider how they think and talk about people with disability." 

Douglas Coupland hasn't used the word in any of his other books I've read. When the new one comes out in paperback, I'll be nervous. 

Here's hoping artists of all persuasions at least deal with the issues rather than purely bandy harmful words around. Or you can just forget all that and watch Jackass's Johnny Knoxville in the completely fantastic The Ringer. That's how you do it. 

Thursday, 21 August 2014

Take exams, pass exams; fight..............

In 1979 I opened my O Level results in front of my expectant family. I did badly. I retook and went on to do OK in life. That's my CV in a tweet. 

So, this morning I crawled up the wall as Down's Bro went to school get his GCSE results. He got into the college of his choice. We're proud and I suppose there's a time when I thought that may not happen. 

You see, he's got a lot going on with his brother. OK, what he's really got is a lock on his door, which worked well during GCSE revision. Stan can be inquisitive and can bother his brother quite a lot. Then there's a fight. Then chaos. But Down's Bro also taught Stan that when he's working, he's to be left alone. 

Down's Bro could have easily fallen back on the excuse that Stan is a disruption generally and then not worked for the exams. But he did work effectively and then did better than we could have imagined. 

So, today we're all proud of Down's Bro because sometimes Stan has to be the bit part, not the staring role, in this blog. Although, my aspirations about sixth form college aren't over because, with support, Stan can achieve a place too in the next few years. And I'll probably blog about that.   

Ringing my Mum and sis more than made up for my disappointment 35 years ago. As for Stan and his bro, there's now no excuse not to have a big friendly fight............