I mentioned that I was meeting the staff from Special Olympics Ireland recently. I had a talk with them about the benefits of using social media – such as this very blog – to help causes like themselves. There are a lot of online ways to talk to people, get their attention, give them your message, fundraise and so on.
The presentation I made to Special Olympics dealt with just three of these: Facebook, Twitter and blogging. People who blog, like many of you, are more often than not up to speed on just how useful tools like blogs are, but it’s easy to forget that not everyone is aware of how powerful online communications can be. My friend Hammie, for instance, uses her Facebook page as a fantastic outreach point for parents or guardians of children with autism, and it is a shining example of how to maximise new communications. Still, there’s a leap to be made for a lot of people, and very often a fear of launching into the unknown.
This is the presentation I put together to try to give the gang at Special Olympics Ireland a perspective on the many benefits of social media. If some of it makes no sense (seeing as I’m not actually standing there in front of you boring the arse off you) then just ask and I’ll try to fill in any gaps.

Can you help me push their Facebook membership towards 2,000 fans?

Next Thursday I’m meeting a group of people from Special Olympics Ireland. Volunteers. I’ve been asked to talk about social media, and how it can help organisations like them in fundraising and getting the positive messages and experience out. There are 300 million people worldwide on Facebook. I’d like to use it to make as many of them as possible aware of the amazing work Special Olympics do.

I won’t need to tell you lot what a great bunch they are, and not just in Ireland. As part of my presentation to them, I’m really hopeful that I can demonstrate how powerful our little blogging community can be for the cause too. We network, advocate, share resources and provide a great early warning system for each other, as well as having a laugh and keeping up to date with our wonderful friends worldwide.

On Friday last I pushed the same message out on Twitter. In the space of 24 hours my little group of followers on Twitter, none of whom are involved in the Ds scene, had added 60+ fans to the Special Olympics group. The fan base went from 1,660 people to 1,740 and is still climbing. It’s at 1,785 as I write. The internet has made this stuff possible, and I would love to hit 2k before next Thursday, Oct 22nd.

How can you help?

• Join the Irish Facebook page here.
• Link to your own area’s Special Olympics FB page too if you’re not in Ireland.
• Blog about the group yourself. Feel free to cut and paste from this post.

And if you want to follow me on Facebook, (not you, Revenue) here’s my profile. It’ll all be just lovely and we can have tea and scones and tut tut about the young people today.

The results aren’t final yet, but I’m beginning to suspect that I might be. Jacob’s mum is always more finely tuned to the nuances of those around her. It takes me a while longer to notice the secretive glances and the subtle berth that separates us from the normals. But it’s there.

Young, handsome and charming.

I’ve been trying a little bit to understand why, but not much. Jacob so long ago became a normal (yes) member of us that his Downs status is just more stuff you have to make yourself  remember, like his eldest brother’s occasional bouts of the wheezies or his middle brother’s problems with stinky farts. (Actually I don’t need to make myself remember those at all.) If that sounds trite well excuse my flippancy all over the place but I’m bloody delighted. It is trite. He learns things more slowly than they did but already he’s shaping up to be every bit as much a pain in the backside as they are, and it cheers me up no end. He’s going to get shouted at, and that is fine. He’ll make us furious at times, and that is great. He’ll wreck the place and we’ll put our faces in our hands or – more likely – have a shouty fight with each other about something apparently entirely unconnected. There will be strife, despair and a sense that somebody, somewhere, pressed the pause button on our two lives when we weren’t minding the shop.

In other words, it will be a 33% helping of the same shit we’ve taken to calling life. With loads of other little Ds extras and head melts thrown in. But on the flip side we’ll have this kid who has played more in the last six months with the toys his older brothers practically ignored when they were toddlers, a kid who wakes up seemingly to make you smile every day and who takes delight in the very act of being. His Down syndrome doesn’t break my stride, let me assure you, although he himself very often does. If I’m under time pressure (I’m always under time pressure) and have to rush past the room where he’s whacking the bejesus out of some VTech junk I’ll feel bad that I can’t stop to play.

If you have a kid with Downs who has health issues, then of course these issues can bring hardship and suffering, but they are not Ds. Your child is not Ds. Your child may have it, but that does not define them, any more than being blond, Asiatic, left-handed, good with science or fond of natural fibres defines them. It’s an aspect of their lives, one that most people do not experience up close and therefore fear, or are made uncomfortable by. How Godforsaken would the world be exactly if we were to strip away every aspect of our otherness, each and every one of us? What ‘common’ traits would be left?

Speaking of God, have you come across the website that’s built upon finding a miracle cure for Trig Palin, son of Sarah? I do not mean to offend anybody’s religious sensibilities, but I cannot visit the site for long because when I do I’m in danger of chewing my fingers off at the knuckle.  April 18, 2010 is the day when God will be sitting up, listening to the prayers of who knows how many thousand as they implore Him to fix poor little broken Trig. Because make no mistake, these people tell us that Trig is not right. Fair play to his mother  Sarah Palin, she has stated that the world needs more Trigs. I’ve gotten ‘the look’ from my better half on more than many occasions when I’ve said that everybody should have one. But it’s very often how I feel. Blessed.

The Pray4Trig people just don’t get that, but I’m setting up Pray4thepeoplewhowanttofixTrig.com which will hopefully enlighten them. My day of prayer will be on April 17 next year, hopefully just in time to stop them piling up God’s email inbox with Trigspam.

Dad, you should REALLY have put a spam filter on that thing. Have you SEEN what's in there today?

Here’s a truly great eye-witness post from someone I admire hugely, so I’m not going to stand around here blethering when I could be directing you to it. Nan P went to the World DS Congress last week and I did not, but I feel like I caught some of the special bits of it when I read her account of some people she met.

Fantastic. Just heart-warmingly fantastic. Go on over and do some reading. Go!

Lookid here now, Mrs Old Enough To Know Better. I know that Our Jacob has Down syndrome. I have a bagful of incidental knowledge about the condition, and I also have a built-in radar for the slit-eyed, sidelong glances that some people keep throwing at him. Yes, he looks different. Yes, I know all the words that are crossing your mind right now, because narrowing your eyes doesn’t do enough to hide them. But you know what, Mrs Old Enough To Know Better, your own grandson is not going to catch it across the playground. Chill out, grandma. Take a leaf from this other lady here, the one who’s cooing and gooing at Our Jacob even though she’s never met him before. She looks like she wants to pick him up and run away with him. And now I ask myself the stupidest question again. Does she know that he has, you know…? Maybe she doesn’t. He’s a pretty smart boy, and maybe she sees that, and then she can see all his other fine qualities too and maybe of all the kids with Downs he’s gonna be like, you know, completely normal and-

King of the swingers

Play ball!

And then you kick your own arse into wakefulness, because somewhere between those two extremes, between the mean narrow-eyed spirit that’s looking at my son’s features like he’s a car accident and the well meant super-compensation of the lady dressed all in natural fibres, is where you have to live. You are the parent of the boy with a life-long condition, and you must be alert to things that others can be relaxed about. But you also have to remember that he’s just a boy, and don’t always wear that Downs Dad hat too automatically because for an awful lot of the time the Downs part of it is an irrelevance.

I know I’m wandering here, but frankly I’m using this post to arrive at some conclusions myself. (Sorry if that drags everybody around the houses a bit as I write, but hopefully there’ll be pictures too, so you can cut straight to them if you like.) I come from a house where no huge pressure to achieve was brought to bear. No monumental expectations were lowered on shoulders. Just do your best, that is what we think you should do. I love my parents for that, because I learned early enough that they had freed me to be myself. That is, I hope, what I will encourage my own boys to do, Jacob included. I have never lowered my expectations for him. I never said this boy’s going to be on the slow bus. He will, I hope, do his best. He will be on the bus.

I’m not entirely naive here. I know he’s not going to be an astrophysicist. That’s fine. I know a bunch of them and they’re disagreeable individuals, usually with body odour issues. Always shooting for the bloody stars and forgetting that in space you can’t smell the roses. And he’s never going to be a corporate lawyer either, so that’s another thing less to worry about. He’s a fundamentally smart kid with an honest face and a big sense of humour. I don’t think we’d ever allow him work in a bank.

Other people have, of course, much lower expectations for Jacob. I don’t know these people, but whenever I actually notice those around me, there’s often one or two of them in the crowd. They’re eyeing up the blissfully unaware Jacob (He gets that unawareness trait from me. It drives herself to dementia when I hear the -hear what I just said? part of her conversations but nothing before that nugget. It’s like a code phrase that snaps me out of my daydreams. But if he’s ignoring her then it’s just cute. Yes you are of course correct, it is unfair. There’s an imbalance here that needs to be adressed by someone in authority. That’ll probably be herself.)

But anyway, where was I? Oh yes, those eyes in the crowd that parents of Ds know so well. If their furtive sideways glances at your child get you on the wrong day, they can upset the whole applecart. If you’re fragile you could end up getting into difficulties in a deep Kleenex somewhere. If it’s the other wrong kind of wrong day, you could be explaining your actions to the guys in blue. Yes, officer, I am aware that reefing her thong up over the back of her head and snagging it on her (long) nose caused her some distress, but did you see the way she looked at my boy? Did you??? And a yeast infection is the least of her worries, I should think…

Anyway, to conclude this wandering ode to silliness, what are the learnings?

1. Lower your expectations. Not of your child, but of a certain set of people with whom you will invariably come into contact. I have minted a fresh word for these people.It begins with a and ends in ssholes.
2. Slower your expectations. This you should do anyway, because it’s amazing how much more of the Louis Armstrong Wonderful World you get that way.
3. Your child is a child. We quickly get beyond the epicanthal folds and the less usual skull shape and all the other stuff that immediately draws the inquisitive stares of the Downs Negative. And what do they know?
4. Celebrate the small achievements. This just started happening for me all of its own accord. I feel the most tremendous sense of accomplishment when Jacob does anything new at all, and I’m wistfully not remembering the same big pride when the other boys hit their marks in crawling, walking and so on. Pride, yes, but not the same level as with Jacob. Is that positive discrimination? Downs positive maybe.

The Generation Game!

Image by Dru Bloomfield

Found this over on Irish Autism Action.

Summer Sports Camps are running in conjunction with the Laois, Kilkenny, Carlow and Kildare Local Sports Partnerships and Special Olympics Leinster.

It’s for any child with an intellectual disability between 6 and 16 years of age. Siblings welcome. If it sounds like you then check out the details at the Autism Action site.

Oh, and a quick apology for the lack of everything round here. A Jacob update is on the way when I can get him off the stairs and in front of the keyboard.

I’ll be dealing with my own bags in the terminal for the rest of my life. Almost everybody else will be doing something similar, I reckon. And then there will be some sad cases that got mixed up somewhere along the line, trundling around, unloved and unwanted. There will be others full of bad secrets and illegal contraband. Most will just have the crisply ironed hopes of a good time ahead or the crumpled memories of one just gone. Either way, whatever the baggage status, everybody’s journey will be just theirs alone, no matter how much we share. Consider the breadth of understanding that exists between the two quotes below.

The first is  from my good friend Elbog, about his daughter Emma, a force of nature (and I do not mean that in the clichéd smashes-trees-and-tears-down-powerlines way) who is showing him himself every day. Nine years of human learning distilled into twenty words of truth. I want to embarrass this man by telling him how wonderful he is, despite his obvious failings (He’s American AND from the West Coast), but I will resist. If you do visit his thought-provoking blog, the perfectly named Bittersweet, please go singly. He’s skittish with crowds. About Emma:

She requires you to deal with who you are; you cannot pretend, pretense means nothing. There is no denial available.

The second arrived two days ago to this blog’s comment box. Just a foolish comment from an idiot. But it’s good to know that we all are different, and while there’s a lot we share, there’s much on this journey that is ours alone. My instinct was to bin it (and I haven’t published the uglier part of it) but what would I learn from that?

Calling a ‘tard a ‘tard is the most harmless insult one can commit, after all, they’re generally so stupid as to be incapable of focusing on the same though for more than a few seconds, so it’s not like they’re even going to remember being insulted 30 seconds down the road.

Image thanks Ozio-Bao

Hammie has done a lot of fantastic work on this post at Irish Autism Action, outlining the frankly terrifying work that’s going on behind the scenes in civil service land here in Ireland. In short, under cover of the economic times, Carer’s Allowance for those looking after kids with special needs is under threat. Assessment is changing, toxic misinformation is seeping out and a lot of already hugely pressurised people are scared witless at the prospect of having their meagre support slashed. You’d be up late if you were paranoid. If you aren’t, start now.

An excerpt:

At no point were parents or advocates representing parents and carers consulted in the process. This is a payment for people who live with and care for a child with a disability. And they didn’t consult anyone who actually does this full time.

Everybody knows that we all have to face tough times. And most everybody I know is willing to make the sacrifices necessary. But this, all frivolity aside, will put suicidal thoughts in people’s heads. It is quite simply misguided at best, and nightmarishly sinister at worst.

We will have to resist, resist at every turn, and do what it takes to imprint on bureaucracy that even faceless actions by the untutored can have the most severe repercussions.

This is really great reporting from Hammie, and I am extremely grateful to her for it. Read it all here. Most especially if you care for someone with special needs here in Ireland.

Thank you most humbly, His Girl Friday, for posting this. It’s great to see your collection of quiet wisdom back in full flow.

A Chinese woman had two large pots, each hung on the ends of a pole which she carried across her neck. One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water. At the end of the long walks from the stream to the house, the cracked pot arrived only half full.
For a full two years this went on daily, with the woman bringing home only one and a half pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.
After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream. ‘I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.’
The old woman smiled, ‘Did you notice that there are flowers on your side of the path, but not on the other pot’s side? ‘That’s because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them. For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are, there would not be this beauty to grace the house.’

Each of us has our own unique flaw. But it’s the cracks and flaws we each have that make our lives together so very interesting and rewarding. You’ve just got to take each person for what they are and look for the good in them.

Do drop in to see His Girl Friday. She’s always got the kettle on for highway stragglers.

It’s easy to get defeatist when you’re surrounded by negativity. It’s easy to add to the heap. But every so often you get to see a video of a guy who likes to order ingredients for Japanese recipes off the internet and you suddenly think to yourself that maybe Satchmo was right. It is wonderful.