Aimee Mullins has 24 legs: Now what disability would that be?

First of all, go to college online by visiting the TED talks. Riveting talks by remarkable people, free to the world. Their words. All sorts of topics, all types of people, all walks of life, all corners of the globe. Ideas worth spreading, they call the concept. Hell yes. And when you see Aimee Mullins you better bet they’re worth spreading. She actually pushed me that bit further when I saw this vid, into the Am I actually a bit envious category. Watch, and listen for the ‘That’s not fair’ bit. I love this.

Thanks to my very good friend Karen Ardiff for bringing this to my attention. :)

And one more thing! If by chance you are in the Leinster region, are free this Saturday 21st, and can help with some focus group research to help newbie Ds parents, then Down Syndrome Centre could do with your help. Get in touch with Sheila.

On Saturday 21st November Down Syndrome Centre, with the generous support of Price Waterhouse Coopers, will be organising a focus group to establish recommendations/guidelines that parents of children with Down syndrome will make to support new parents with their child’s development in their first year. This will take place in PWC’s new offices on Spencer Dock in the IFSC from 9.30am to 1.00pm.

We hope this information will form a ‘roadmap’ of sorts which will greatly assist new parents in knowing what they should be doing/feeling etc in the first months of their new baby’s life.

Published in:  on November 20, 2009 at 12:36 am Comments (3)
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Using blogs and social media to spread positive news

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.

Special Olympics Ireland on Facebook

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

facebook_logoNext 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.

Picture 1

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.

Published in:  on October 18, 2009 at 12:59 pm Comments (3)

I must be an idiot

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.

jacobme

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?

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

Published in:  on October 9, 2009 at 10:28 am Comments (37)

Notes from Nan P’s Congress

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!

Published in:  on August 31, 2009 at 12:44 pm Leave a Comment