Hosting World Down Syndrome Congress: practical assistance

I posted a couple of weeks ago about the World Down Syndrome Congress happening in Dublin between August 20th and 22nd. I’ve been mulling it over in my mind since then, and I want to help. I’d like people’s opinions as to my first-draft plan.

The basic idea is that through the wonderful medium of blogging, I set up a site where people can offer a room to people who are visiting for the duration of the conference. I’m in very early discussion with the Congress organisers, and the rudimentary plan is that we compile a list of people who can and will, and marry it with a list of those who need. The blog would only be a harvesting site, so to speak, and not ultimately fix visitors up with hosts. Privacy absolute etc etc.

Anyway, I haven’t organised anything like this before, and I’d be keen for input from my trusted blogger friends. In due course I’ll probably come a’ begging for you all to outreach the proposal on your own blogs too. Obviously the locals are the ones most likely to spread the word to possible donors, but you far-flung folks aren’t exactly uninvolved. You might end up shacking up with us!

Thoughts please…

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Goodnight, Irene, goodnight.

I’m tired. I’m working a lot, and when I’m not I’m thinking about it. So I thought I’d pull a lazy one tonight and just post somebody else’s content. Patricia E Bauer always has plenty of news, thought I, and she won’t miss it if I pinch some. And thus I got introduced to Irene.

I shouldn’t moan about tiredness.

When her daughter was born with Down syndrome in 1942, doctors told Irene to institutionalize her because she was hopelessly handicapped and probably wouldn’t live more than a few years.

Mrs. Henry disregarded their advice, and instead took her daughter home and helped to start a school for children with intellectual disabilities.

Putting mentally handicapped children in an institution, rather than having them grow up at home, was a common practice when Mrs. Henry gave birth to her daughter, Judith, but she was having none of it, her son Albert said.

“She’s my daughter, and I’ll take care of her,” she told the doctor, according to her son.

Daughter Judith Martin lived with her parents until 1991, when she died at age 50. Mrs. Henry’s husband died the same year.

On the second to last day of 2008, Irene C. Henry died in Chicago aged 91.

I do not thank the people who came before me nearly enough. They didn’t enjoy anything like the same level of acceptance or support that we as parents and grandparents do, and going up against the Wisdom of the Day was a lot tougher for Irene. But that determination gave Judith a full life with her parents for fifty years.

I owe you, Irene. Sleep peacefully with them.

What disability would that be?

I caught this via my friend Peajay at Mórán cainte ar bheagán cúise. This is for everyone with a handicap, disability, shortcoming, failing, lack, limitation, drawback, weakness, flaw, defect or imperfection. (Apologies God if I left you out.)

If you can’t see it try this link

It’s only eight months away!

(But first a reminder about Grandparents Day for DS!)

I dunno about you, but I’m a little bit excited by the thoughts of Ireland hosting the World Down Syndrome Congress in August. If you look at the website it’s clear that a lot of people have already been doing a huge amount of work to make it a very big deal. For instance, as a sidebar to the main even, which takes place between Aug 20 and 22, the Down Syndrome Medical Interest Group (Sounds like a trendy barber’s, D-Smig. Not sure they’re here for a trim though.) will be meeting on Wednesday the 19th to think big thoughts about getting important medical information out into the world. These are top healthcare professionals from around the world. You have to be a little bit in awe of commitment like that.

And that’s not the tenth of it. Take these guys: the Research Directions Group will be working

to identify and prioritise the research directions that promise to deliver practical benefits for the development and quality of life of people with Down syndrome and their families in the near to medium term (5-10 years) and identify current best practice in development, education and healthcare. It is multidisciplinary and comprehensive, including genetics, development, cognition, education, behaviour and medicine and is open to researchers, practitioners and families.

Come on! This is basically a think tank. The closest I’ve ever come to a think tank is a bloody oil tank. This is big stuff, and it’s all happening in the Royal Hospital in Kilmainham right here in Dublin. There are lots of ways to become involved, as volunteers and more, and wouldn’t it get you right into the heart of the action?

I’ll be coming back to this topic for certain, but I just thought it would be a good idea, if you’re at all interested, to just start to think about starting to think about making plans.

Here’s a contact link. You can join the mailing list and get regular updates. Laters y’all.