Downs with the family

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

Wednesday, 6 August 2014

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. 

Sunday, 3 August 2014

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. 

Saturday, 7 June 2014

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 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.