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!!!!!!!!!!!!!!!!!!!!!!!!

5live Nicky Campbell Phone In 27/10/09

Afternoon,

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?

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!

More Signs / More Craic / Skip!

Happy Friday ! Long overdue post as always.

We had been told that Ava would really 'come along' once she went back to school and it's true! Ava has learned more and more signs (Mum, Home, Finished, Teddy, Wave, Me etc etc) and is just doing more and finally moving more and more. Plus more teeth! More and more craic too!

Are you talking about me Dad Dad?

Aww your embarrassing me.....your too kind..

Finally I got to bring Ava to Skip this week and it was fab! I am going to go again soon but so great to have access to extra stuff like Skip.

Long overdue update

So been busy to haven't updated the blog in a while.

What's been very interesting of late is how sponge like Ava has become. It must be her age (16 months) but she is learning loads. Here is a (shamless video) where she can do high five, find her tummy, do clap hands and stuff. Although not in this video she also can Lamh sign 'mum' which was very exciting in our household! We are going mad with Lamh now to try get more into her.



On the Lamh front we bought the "Lamh a Song" DVD and it is great, the only criticism I would level is the reference section where you can look up words, the sign is actioned but the 'Lamhin' mouths another word? You would need to see it for it to make sense but otherwise the DVD is good to plonk your child down in front of it rather than say Sky News :) Ava is glued to it!


Finally a mention of Down Syndrome Centre who you can follow on Twitter or Facebook
These guys seem very smart and had an online live chat last Friday with Ann Haig which had technical issues but will no doubt work great going forward. They also had some events of late which were very successful.

Swings+Lamh

Happy Bank Holiday!

Quick post of a small clip of Ava on the swings :)


Also just bought a copy of the Lamh a Song DVD which you can get here

Review to follow!

Heavy Stuff (Alert)

Heavy article in last Sunday's Times. Watched Duffo read it with great difficulty and had intended to read it but forgot until I saw it on Muse's Blog

Heavy article and really made me think. I was going to write something last night but was too angry reading it but this morning upon reflection I feel both angry and very sad.

It annoys me greatly how she discusses 'losing' the baby. It also annoys me they way the ceremonial element is outlined and how he can 'watch the football' where he is laid to rest. Photographs and footprints....really?

It saddens me that she had no idea what she has missed out on. I wonder what her best friend thinks? I personally think there is something significant that by the end of the article we see she is on her second failed marriage. I know but that's what I feel.

Ava comes into our bed each morning and smiles away at us, doesn't look like she is suffering much to me?