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.

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. 

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. 

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

Gammy: A healthy discussion

So, why was Gammy's sister described univerally as 'the healthy twin'? According to the Straits Times of Singapore, Gammy has 'no life-threatening heart disease'. Many children with Down's are born with a hole in the heart. Stan went one better with added Atrioventricular Septal Defect (Don't ask). So you could say, when he was born he was 'unhealthy'. But Gammy? He has Down's Syndrome but that doesn't define his health status. OK; many kids with Down's have associated medical issues, but Down's in itself isn't a disease. 

This reporting has really got the hairs on the back of my neck standing to attention, because the use of the word 'healthy', even if it is journalese and works its way nicely into headlines, further stigmatises this little lad. Come on world; I thought you were supposed to be on his side?

Rant over. I really shouldn't get so upset. It's not healthy. 

Abandongate: How Gammy helped out at the pool this morning

Suddenly; a news story that isn't in the Middle East, the Ukraine or West Africa. This should be the silly season for the media, but big international events are keeping their focus on geopolitical issues. Then #abandongate lands on the editors' desks and it's time for an international story that's slightly different and which people can do something about. In this case, send cash. And awareness has been raised about Down's. 

So, was it me or did Stan and I have more respectful looks this morning at the swimming pool? Surely one result of the #abandongate / Baby Gammy situation is that people who are shocked at the thought of a baby being abandoned - just because of his Down's and related medical conditions - would also be less shocked and more accepting of me and Stan doing our thing in the pool, than they sometimes are. 

If you're a Down's parent and you've missed this news story you've been on another planet. But that's OK, as Down's parents we're often off the planet anyway. Oh, the challenges... But is that enough for this couple to only take home the 'child that works' - ie Gammy's Sis - and leave Gammy with his surrogate Mum? Don't get me wrong; sometimes I feel like dropping Stan off in Thailand, but only for a bit of Down's Dad down time, not for a lifetime. 

It's great that the Down's Syndrome Association have just put out a statement saying that they hope Gammy will be reunited with his sister one day. The Mum in Thailand needs lots of support and it's good that hard cash has already been promised. 

And, in the pool next Sunday, we'll we're just be doing our thing. Just like Gammy will be soon, we hope. 

Really freaking out

Woman on a packed train home. Three-year-old daughter. Screaming. I mean, really really screaming. In the rush hour. My first reaction was one of pure relaxation. How selfish of me to find someone else's misery something calming. I've been here, on public transport, when Stan's either wanted to have someone's seat, cuddle them to death or scream the carriage down. 

And now...it was someone else's turn. Perhaps she should have got off because everything she tried didn't work. On the other hand, she probably just wanted to plough on through to her stop. Her daughter said that she didn't want to sit on her knee. Overhearing this, a kind passenger (not me; I was standing) offered her seat, but the Mum knew that the girl was flailing around looking for anything to say. She turned down the request and the crying continued. 

Then the high-pitched screaming really started. I hurt my left ear in 2005 at a Chemical Brothers gig. I carry special music ear-plugs for just this situation because loud or high-pitched sounds hurt my ear. But I couldn't put them in; I had to let my ear get hurt a bit. How could I, possibly the only person on the train who understood what was going on in this poor woman's head, suddenly fish out two specialised protection ear plugs to drown out her daughter's cries? 

You could just feel that the carriage was desperate for it all to be over. When Mum and daughter got out, lots of people were staring and I got mighty close to asking them to "go about their business" without adding to this woman's woes. 

I wanted to tell the woman that I know her pain, and that I understand that her daughter's not really like that. But her body language was telling the rest of the carriage to back off. No surprise there. 

Life can be stressful for a parent with or without a learning disabilities to deal with. I wanted to point out that the girl will calm down, and they'll laugh about it one day. But I don't think she was in the mood to listen to that...........But I had as sense of 100% empathy. 

Waiting for the World Cup

"All little sisters like to try on big sisters' clothes" opined Elvis Costello on his much-unappreciated Imperial Bedroom album. Well, sometimes it's brothers who do the same and I have to live with the fact that Stanley (named after the family team's greatest son, Sir Stanley Matthews) is wearing his brother's old shirt, making our family look decidedly biased towards a certain North London local side. 

He likes the shirt. So, what's a Stoke fan supposed to do? Down's bro decided long ago never to walk in anyone's shadow, especially his entire family's football team. And I'm proud that he's stuck to his guns (geddit) under tremendous pressure. It could have been a lot worse; if it had been Man United he'd be living in the shed. 

The same goes for Stan though. Imagine; putting a little disabled boy in the shed. Luckily, I didn't have to. 

I've spoken before about how football has bound us as a family. I recently was lucky enough to take Down's bro to the cup final. It was fantastic to give him the chance to see his team win. And I've spoken about how that goal by James O'Connor played its part in saving Stan's life. And how Stoke's losing appearance at the Cup Final in 2011 was a good day for our family. 

I usually hope to blog with a decisive message; something we can all learn from. This entry, however, is really just an excuse to say that we're very excited about the World Cup. That includes Stan, when we persuade him; I wonder if he'll fit in that old England shirt?.....

Luis Suarez and the rewritten headline

After the success of the "happy" video for World DS Day, I pledged to a friend, on facebook, that the next time I saw a "suffers from" headline I'd be onto it. I didn't have to wait long. The original title of an article said: "Luis Suarez stops to play football with Down's Syndrome sufferer". But I pointed out that the boy probably wasn't suffering at that point. I actually clicked on the email that goes to "corrections and clarifications". Well, they were fantastic and within minutes had rewritten the title. Here it is. 

This is important because the article, on an American site, went on to be syndicated on many other news/sports sites. Luis Suarez needs all the good publicity he can get, and this was a human-interest story that's not usually associated with him. So it has 'legs' as a story.

Therefore, it was good to nip this in the bud. 

The editor did confirm that they were using journalese, but had the grace and emotional intelligence to immediately understand what I was saying. So, if you get one organisation to nudge their 'style guide', that's good. 

Why so important? Aren't people with DS referred to this way every day.....and isn't it usually much worse? 

With words, I'm usually less bothered than some people....usually. It's just that, in the week where people with Down's were shown to be...oh so normal, it jarred. And I know that the use of words is very important to many people. Just tell someone who uses a wheelchair that they're 'wheelchair-bound' and expect an animated response. 

It's good to think that we can change attitudes by changing some words. (Of course there's so much else to do). Because the title of the article is now much more empowering, less patronising, and, dare I say it, dynamite for Luis Suarez's PR machine. 

Well done to the Bleacher Report, who runs this site. One small victory. 

'Suffering' from Down's?

Happy

The next time someone throws that old cliche your way, show them this.

Dance champions

Stan and Nicholas after they stormed the show....

A former day trader has helped Stan and his friends turn a placid audience into a seething crowd of appreciative whoopers and hollerers. 

Redfoo makes up half of the electro house duo LMFAO, and it's their song that Stan's school danced to in the battle of the Barnet schools this week. 

I've just learnt all I need to about Redfoo from Wikipedia, but the audience was given an education of sorts by a group of young men with learning disabilities, who were determined to compete just as much as the other acts from Barnet's schools. 

It was, of course, another "if only I'd known on the day he was born" moment. It was empowering - and to witness those parents, who don't have a child with a learning disability, cheer their lungs out - was just as it should be, but it was, all the same, fantastic.

LMFAO have millions of You Tube hits, and it felt like the noise of their entire fan-base in the Arts Depot this week. It was joyful to watch as Stan and friends brought the house down. 

Catriona's daughter's disabled. I'm sorry, I don't find Catriona "inspiring".

I've spoken before about how being a Down's dad has, at times, elevated me to superstar status, for people who think it's the job I was cut out to do. Very kind of them it is and very good for the ego. 

But consider this. A friend of mine, Catriona, has a daughter with Rett Syndrome. Rett Syndrome is the Cinderella to Down's Syndrome. Catriona hasn't been invited on the media recently. It's nowhere near as sexy for reporters. What's that all about? We both have a disabled child, but somehow Stan's of more "currency". (A recent journalist request asked for conditions that "aren't too rare". Quaint.)

But Catriona writes a fantastic blog. After a recent post on Facebook, a couple of people came on and said they find her inspiring. I talked to her, away from the glare of her Facebook wall, and we both agreed that the word makes us feel uncomfortable. 

We were dealt this hand and we get on with it in our own way. For me, this includes writing this blog, thumping the table on Sky News and making sure that Stan has a great life, included wherever possible. 

I was approached in the park a few months ago by a woman who said  that she'd seen me in the pool with Stan and how she thought I was a great Dad. Why? Because Stan has Down's? I could have been offended but wasn't because I see what she was trying to do. But, for all she knows, I could be serial killer on the side. Catriona and I didn't ask to be inspiring. We just do what we do and there are many parents of children (and adults) with learning disabilities who keep battling away. And that's why I wrote the Daily Mirror online article about why Rion Holcombe's success shouldn't be described as "heartwarming." 

There are exceptions. Speaking to Catriona, she says: “I am very happy indeed if professionals (therapists, teachers, social workers and others), who read what we write about our children, feel inspired to do a better job, as a result of understanding better children like ours and the families who love them. That kind of “inspired” is good!”

Talking of teachers; at Stan's school recently, I fulfilled my role as governor and attended the Xmas term awards ceremony. It was fantastic and a good chance to see how the teachers interact with the students. Many awards, including high GCSE marks, were handed out. But I stopped short of calling it inspiring because it was far more important than that. It wasn't heartwarming, it can't be described as: "didn't they try hard". It was just what these young people should be doing. It was a rattling good night out, celebrating richly-deserved success. 

Catriona tells me: “The problem I have with the word 'inspiring' is that it makes me feel 'other'; people are creating distance between us and themselves. This life could happen to anyone; it's not just for 'special' people.”

So I won't be calling Catriona "inspiring". She's fantastic of course, but she's motivated in getting the right things for her daughter, Amy.