Saturday, October 31, 2009

Happy Halloween

Happy Halloween Guys!
I am a princess / ballerina avec wand and fancy headband!

Princesses can have Down Syndrome too!

Yes there were wings...a princess / ballerina needs wings.....

Happy Halloween!!!!!!!!!!!!!!!!!!!!!!!!
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Tuesday, October 27, 2009

5live Nicky Campbell Phone In 27/10/09


My good friend Bill from the UK let me know this was on this morning and so I managed to catch the start. Seemed interesting and now it is over a podcast is available for download (info below). Also link from related story on sky news here

There's been an increase in the number of unborn babies diagnosed with downs syndrome in the past twenty years. Researchers also found there's been an INCREASE in the number of abortions as a result. Is there enough support and information for people faced with this decision? Do we fully understand what it is to have downs syndrome or care for a child born with downs?

Monday, October 19, 2009

Personal Outcome

Morning. Haven't posted in a while. In the past few weeks we have been on holidays (some snaps below) and all is well I am happy to report. Ava is doing more and more Lamh signs which is also great. We did have an interesting Personal Outcome meeting recently which was a very useful exercise.

As (I hope) I have mentioned before we are very lucky with our local services, Carmona (new website incidentally), more specifically the Kildarton school Ava attends. It is really excellent. Clean, safe and the staff are brilliant. As you can gather we can't fault it.

Last week we had a Personal Outcome meeting. Two staff (you know who you are!) came to our house and went through a series of questions covering where we are at right now and our experiences of the services. Examples would be are we happy with the services (yes), do we get extra help if there is an area that needs more work (yes) and other obvious aspects of how we are doing and feel they are doing. Apparently all disability services do this.

Some interesting points came about from my personal perspective:-
  • Roadmaps. I am a big believer in this, I think Dad's especially want to see what the route forward is from the very start? What age do they possibly go to school etc. They have a roadmap style brief in the pipeline which is great as I think everyone would like one as soon as possible (again my opinion)
  • Child Safety. They have a child safety DVD they are going to give us which I think is a great idea. We always planned to do a course but never did one.
  • Rights were discussed. That is what rights our children will have and at what age? this really got me thinking as although it is a long way away I had never considered at what point I would hand the reins over to Ava but also who decides what rights she has when I do?
Also huge congrats to Martin and Shelly on the arrival of Evan!

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