Thursday, 31 October 2013

Down syndrome awareness links.

Well, as promised, with just minutes to go of the last day of October, here is the second of my blog posts dedicated to "Down syndrome" (Trisomy 21) awareness.

I went looking for a list of common features of Trisomy 21 and I couldn't find a complete list. Here's a rule of thumb which her head paediatrician from the NICU at the Women's told me. If you hear that something is common with Trisomy 21, it always occurs in typically developed bodies too.

A second fontanelle is something that pops up sometimes in babies with Trisomy 21, and also sometimes in babies without Trisomy 21. A heart defect pops up in about 50% of people with Trisomy 21 and it also pops up in many people without it. My Mum had one of the heart issues that Jacinta still has (PDA) and it wasn't diagnosed until she was 63. Her father also had a hole in the heart.

If you look at things that way, you'll see that having Trisomy 21 doesn't have to put anyone in a separate category for special treatment really. Depending on how well they can work with or around their limitations, individuals can carve out very meaningful lives. Plenty of medically typical people do a lot worse than your average person with Trisomy 21, despite having no excuse!

There are so many things popping up online that challenge the old-school thinking re Down syndrome, it's hard to remember them all. I've listed below a few that I remembered in particular and managed to track down again.

This first one is something I came across a couple of weeks ago. It's just a lovely article about these two being voted homecoming king and queen - and it was a point of respect, in particular, rather than condescension.

This one is a link to a preview of a DVD. I haven't watched it, but it's an interesting story which was captured on film. It covers the story of Monica and David who got married and then had to really work hard to convince their parents that they needed their independence.
- Monica and David

Karen Gaffney is a legend. She just busts through glass ceiling after glass ceiling. Awesome.
 - Karen Gaffney

Tim Harris must be one of the best bosses ever. A friend of mine saw this video and wants to open up a franchise store - so long as everyone can do the 'going to work' dance.
- Tim Harris

This is a great article about another person who has won the respect of the people around him and rewarded for that.

This guy is just plain fit. I did a double-take when I saw these pictures - a little bit like in Harry Potter 4 when Harry was in the bath and looking a little too grown up.... Yet another paradigm to conquer!
-Renan Codogno

This is cool. Basically a young lady not-quite-going-off at the world in general.
 - Don't Limit Me

Highlights for this week:
We saw the Paediatrician (who first gave us the diagnosis when Jacinta was about an hour old) yesterday. When she looked at Jacinta, she said, "you look so different!!". She was very impressed with how good she was looking.

We saw the Osteopath today who was very happy with the shape of Jacinta's head. She says it's looking much rounder, not flat like it did and like many children she sees with Trisomy 21.

Yay!! Go Jacinta, go go go! (That's one of the chants we sing when she's on her crawling track...)

I hope some of the links up there give you some idea of the crazy notions we have in our heads and what we see as the nonexistent glass ceilings for Jacinta to work within!

I'll post photos of that lovely head next post. Very soon!

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