Don't Worry

Breaking News - You have Down Syndrome / Down Syndrome Center

I try not to post unless I have something I think is of significance. Nothing has struck me of late worth posting until two things came along at once this week.

We were advised (I won't say by who but it was a professional!) that it is a good idea to start telling your child (in our case Ava) that she has Down Syndrome? This may seem a blindingly obvious thing to most people but not us? We kind of thought to date that it is all about fitting in and inclusion and we certainly never mention it explicitly. The reason however for discussing this with your child from an early age is that so when it does come up they are prepared / aware and not taken aback / upset. Other children / teachers may mention it and they need to be aware. This seems sound advice so we plan to do it but brand new information for us?

Secondly as per previous posts we have been involved with Down Syndrome Center who provide the excellent Liaison Nurse service and have a great website / facebook page with fab articles. I see from their site that Sheila Campbell is no longer CEO. Sorry to see Sheila go and hope both herself and DSC continue to do great work!

Down Syndrome Centre - New Parents Evening

(gratutious photo of Ava nothing to do with the actual post)

Myself and Ciara (Duffo!) were asked by Down Syndrome Centre to speak at a New Parents evening 09.08.11.

The evening included talks by ourselves, DSC Liaison Nurse Angela O Riordan and Speech and Language Therapist Marinet vanVuren and was well attended (some *super* cute babies also in attendance). It was in the Shelbourne (Dublin City) in a most grand room with a lovely view of the green (hugely irrelevant)

We prepared a presentation with related notes. Myself and Ciara took alternate sections, took questions at the end and were very pleased that people had some to ask.

There was questions about :-

- Starting solids? (Answer we took advice from another mother of a child with a 'regular' child)
- When we started working on communication? (Answer 3 months)
- When to start services? (Answer 3 months).

We just spoke from our experiences and gave our opinions. We emphasized a couple of points, to make contact with other parents and get into School early and start S+L / Dev skills ASAP also. One lady said she was not keen on attending services so early but listening to Ciara was going to dive straight in so that was great to hear (and let's hope that works out ok!)

I also took the opportunity to highlight the deficiencies in Lamh's approach in that you still cant source material online but must instead take a course. It was telling that parents there were keen to start but had not yet taken the course (there was a put your hands up straw poll). Again what a pity that this approach is taken as it surely impacts development of the children? And we pay for it? (puts away soapbox)

I will create a link to the slides and also add the notes (expanded) which may be of use to someone somewhere?

Note that this is our opinion and experiences. As (film reviewer) Mark Kermode would say "other opinions are of course available". As we also said to the parents on the night we are conscious of those with children who have serious heart / health problems and we were aware of that (we have dodged a few bullets so far)

As a footnote ages ago we received a signed copy of a lovely book "It's Me, It's Me" by Jacqueline O'Donohue who recently passed away. DSC were giving new parents copies of the book as they left and I felt it worth a mention as it is such a lovely illustrated book we still read it to Ava. It can be purchased on their site and I would recommend it and hope it continues to get out there.

Say it!

So yesterday morning was started with the news that special needs teaching support was to be cut by 10%. Having (like most) tolerated the cuts / tax malarky that has been ongoing for two years this was the breaking point. Rather than moan about it, I googled my local TD, found her mobile no and texted her. I told her that I had voted her first preference and that this new proposed cut was not acceptable. Within minutes I got a reply, she requested my email and I got the proposed details from the Ministers office. I drafted a letter in response.

Later I listened to Ruari Quinn backtrack. He started by apologising for the miscommunication (as well he should) and then rambled on. Now I am not sure if this was a kite / a backtrack / a mistake? This is not even about how quick my TD replied (as lets face it if the cuts had / do go / gone ahead this would be cold comfort.

The point is contact your TD's and tell them that no matter what this indeed was in the end we are as concerned parents / citizens monitoring unacceptable proposals such as this and will represent those who cannot represent themselves.

Now here is Ava pretending to be a cat.

Trials and Tribs

Evening all,

So Ava is *finally* walking. Not to the shops and back with the papers but twenty steps and still way too cautious but getting there. We are delighted. Major thanks to the physio in Kildarton who worked tirelessly and used every trick in the book. Kildarton do great great work. Here is a video for reasons best known to myself I flipped my phone halfway through so apologies.



Second had my first experience recently of kids being cruel to Ava. Tough one. We were out and two kids (small but old enough to know better)fully walked over and pointed at her and 'impersonated' her. They were literally standing pointing and laughing a foot from her face, She smiled and waved at them. That couple of seconds put me in bad form for two days to be honest. It taps into the deep rooted fears one has I guess? I mean especially with small kids cos unlike say a rude guy at a Supermarket you cant walk over and smash em over the head with a bottle :-)

Anyway take the good with the bad and its 99% good.