South Dublin Dad Blog

Don't Worry

2011-11-16T12:37:00.001Z

Breaking News - You have Down Syndrome / Down Syndrome Center

2011-09-20T21:08:00.002+01:00

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

2011-08-15T07:42:00.003+01:00

(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!

2011-06-03T13:08:00.001+01:00

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

2011-02-14T20:50:00.003Z

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.

Down Syndrome Centre

2010-11-24T14:52:00.002Z

Afternoon, I recently did some work for DSC and we decided to use the interviews we did as standalone case studies and you can view them on youtube on the Down Syndrome Centre TV Channel

There are two types of parents, some availed of the Down Syndrome Liaison Nurse and some did not. It is encouraging to see 350+ unique views in just one week.

Walking!

2010-10-17T13:33:00.004+01:00

Morning,

Cracking result today as Ava has finally made progress in her movement. Here is all the information which someone may find useful.

Ava has been slow to walk. She had been standing and cruising along furniture no problem but was very very cautious. We bought a little trolley from Ikea but again she was wise to the fact it might run away from her and she would fall. This had gone on for ages so yesterday we took action!

We tightened the wheels and put in a Tupperware box filled with sand (we can then adjust it if needs be by removing some). It was still too light so we added a box of detergent and this happened:-

Lester

2010-10-11T14:06:00.001+01:00

A quick post on a website that was sent to me about an artist with DS called Lester.

http://www.lestermagoogan.co.uk/index.php/videos/films/film-by-animo-tv-dublin/

Looong Overdue Post :-/

2010-10-05T16:50:00.003+01:00

I haven't checked the stats recently so not sure if people still make their way to this blog but sure will do an 'ol update anyway. It has been a few months so sorry :(
Life has been been very busy as we also have our little Dylan. Ava had a good summer but was definitely getting bored by the end of it. This seemed to manifest itself with a lot of shouting which we didn't enjoy much. We were hopeful that when she started creche and "second steps" class in her school that we would see this improve and hopefully see a start to the walking!

So Ava started her "Second Steps" class 4 days a week and also has creche two afternoons a week. We have seen a massive change (all for the good) in her since she started. She is super close to walking now and is definitely trying to talk more. The extra stimulation has her babbling and standing and generally really moving forward with more words etc. There was an adjustment period where a few tears appeared when she started back but these seem to have gone now (fingers crossed)

On another note the last few months have seen me do some more work with Down Syndrome Centre doing interviews with new parents discussing the most excellent Liaison Nurse plus general new parent case studies. They also ran a new parent night in Dublin which was well attended with 60+ people.

Got a reminder from a friend this morning about Punky a new animation series from Monster Animation. You can read more about it here. It launches early next year. The relevance here is that Punky is the first headlining cartoon character to have Down Syndrome. Punky lives with her Mother, Brother and Granny and gets up to all sorts of adventures and mischief! Sounds fab.
Punky will broadcast next year with twenty episodes, each seven minutes long.

Get Up Stand Up

2010-07-01T21:04:00.004+01:00

Watch this.....
I can pull myself up now......on just about anything....and do so all day long...

It rocks!
So Ava is two and a bit and still no walking :/ Loads of the boys her age are *flying* around the place like mad and we are patiently waiting. The great part of meeting with other parents, especially those with older kids, is they reassure you it will come. In recent weeks Ava has been moving *loads* and can pull herself up and shuffle round like mad. We have to baby proof the house now (or move out which is not really an option to be honest).

Schoolwise Ava has finished "First Steps" in the super fantastic Kildarton and starts "Second Steps" in Autumn. Finally Ava is now attending a Creche over the Summer and is already in the 'settling in' week.

All in all she is coming along great I am happy to say.

I will endeavour to update the blog more going forward and bore you all with the details of Ava (Bear)

Buy my Dress / Ava in the Examiner!

2010-05-18T21:10:00.005+01:00

The all important Buy my Dress campaign takes place this Thursday 20th in Dublin in Cork.

Full details at the (rather excellent) Down Syndrome Centre website. Funds from the event go towards a liaison nurse so spread the word! I was in the Down Syndrome Centre office's recently and it was pretty full on with Sheila and her staff working tirelessly to organise the event, surrounded by dresses everywhere. This was weeks ago so I imagine they are wrecked by now.Related to the event we gave an interview to the Examiner newspaper, we basically as parents were outlining how important it is to have a liaison nurse available when a child is born with DS so get out there and buy some dresses people.

All Grown Up! Two! Peppa Pig! School! Cake!

2010-04-14T09:17:00.005+01:00

Morning,

Can't believe our Ava Bear is Two! Her birthday was at the start of April and we had all her friends over for cake and balloons!

Also today is a big day as Ava starts going to school on Wed as well as Monday. Her schedule is pretty jammed now with School Monday / Mothers Group on Tuesday / SKIP on Wed AM / School on Wed PM / Extra swimming sessions!. Busy busy especially for Duffo!

To celebrate this milestone she has a new schoolbag which will debut today.

Not all roses in the garden however in that although she is picking up loads of new Lamh and now saying "Yes" and understanding loads she has yet to master the ol walking but is slowly getting there.....not a moment too soon!

Ava Doin Her Thang!

2010-03-04T11:30:00.001Z

Family Guy....

2010-02-23T09:32:00.003Z

I watch Family Guy a lot. I even watch repeats I have seen before when there is nothing else on. I often am shocked at how they push the envelope and watched the 'Down Syndrome' episode with major trepidation.
Definitely not a good episode humor wise but I was not personally offended. I was pleased to see the character was played by a woman with Down Syndrome (Andrea Fay Friedman). I have watched Palin on Fox and also The View discussion and tried to get a sense of what people think out there.

Personally it appeared to me like inclusion with of course some jokes at her expense but they have done far worse in the past to other people and other disabilities (Michael J Fox etc).

Interesting Article from Irish Times 02.02.10

2010-02-03T21:51:00.004Z

My sister gave me a heads up on this article from the Irish Times last week, well worth reading a good news story when you constantly hear about cuts.

Down Syndrome Centre ThinkTank

2010-01-31T00:01:00.002Z

Evening All,

This morning myself and some other parents attended the Down Syndrome Centre Think Tank in PWC Offices in Dublin. The aim of the event was to outline challenges and solutions related to new parents and the first year of dealing with a child with DS. I gather this is the first of several Think Tanks.

We all got to input our thoughts on the kind of challenges one can expect and solutions to them. In addition we got to suggest resources we found useful and I even managed to hear some new ones myself. As with all such discussions there is always a tendency for parents (myself included) to focus on their own unique situation and ramble on. The unique format of the event, using a laptop based collaboration system, kept things mostly on track however and I think the key points were definitely captured.

Down Syndrome Centre should be commended as this was extremely well organised but this is what we have come to expect from this highly progressive organisation. I spoke with more than one parent who felt the same way afterwards. As a facebook user I am often delighted to see their informative articles appear on my news feed and they are also on twitter!

I'm Down With You

2010-01-13T09:47:00.003Z

I saw this just now on Facebook (from Sophie McCaughey post) and *love* it, I really like the intro especially and how he describes people with down syndrome. Love it Love it. Hope you all enjoy it too.....

I'm Down with You from jagatjoti Singh Khalsa on Vimeo.

A New Arrival

2009-12-12T07:32:00.002Z

So we have a new arrival, Dylan James born yesterday Dec 11th weighing just over 7 and a half pounds. Ava now has a fab new little brother and we are delighted.It was kinda crazy going back to the Rotunda and the same operating theatre area (Duffo had a second scheduled section delivery for medical reasons - not posh spice reasons!). We met most of the same staff even and we were worrying for months about this baby but he seems to be perfect....but then again so is Ava so mixed emotions all round.

We have great friends with one kid with DS and one without and it seems to balance so well.

Happy Days!

I Can See Russia From My House

2009-11-22T10:40:00.002Z

Wouldn't be a huge fan of Sarah Palin but found an extract from her book interesting. You can read it here and whilst it contains nothing earth shattering it is worth a read.

Happy Halloween

2009-10-31T19:19:00.000Z

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

2009-10-27T12:52:00.004Z

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

2009-10-19T11:13:00.002+01:00

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!

2009-09-18T15:10:00.001+01:00

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

2009-08-25T16:52:00.003+01:00

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

2009-08-03T16:58:00.003+01:00

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)

2009-07-22T08:21:00.002+01:00

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?

Campaign Against Cutbacks in Crumlin

2009-06-29T14:23:00.002+01:00

PJ Interview with RTE

Shot of Teddy's as of noon Saturday, Ava's Bear is the one with the Yellow Ribbon :)

Fair play to the organisers.

Kids (one of which is Jack) amongst the Bears

Official Down Syndrome Dublin Parent & Toddler Group

2009-06-26T09:29:00.003+01:00

This post is probably a complete waste of time as Cathal's Mum already posted it. This is especially tragic as it is my missus, Duffo, who has organised it. So sit back , relax as I shamelessly cut and paste the post in here:-

The Carmelite centre will host the first 'official' parent and baby/toddler down syndrome Dublin group meeting on Mon 6th July from 11 a.m. to 1 p.m. Please let me know if you can attend and more importantly spread the word in your services. Siblings are also very welcome. Please bring some small toy or something to keep everyone occupied and a packet of biscuits or anything tasty to keep parents occupied. There is a tea and coffee station there.
The Carmelite centre have stated this is a trial for them too so depending on how we get on Mon 6th of July they will confirm if we can continue to Sept. It would be great if we could get a good number to show up. There is paid parking behind the centre, the directions to get to it are:

Approach Aungier Street from the Camden Street/Wexford Street direction, past the Church and go left at the lights and then immediate left.
There are also lots of buses going down that road, and the Luas is very close by!!!

Spread the word.....and join in for fun, tea and chat

Location shown as point "B" on the map below.

The Carmelite Community Centre
62 Aungier St
Dublin
01-4005955

Directions here

Crumlin - Hit The Streets

2009-06-24T14:06:00.002+01:00

It doesn't matter if you have never ever had a child in Crumlin. Hopefully you never will. Ava and her friends have all spent some quality time there (some more than most) but proposed cutbacks to Crumlin are unacceptable.

To force Cowen and his band of muppets to do yet another u-turn we need to take to the streets. And we need to be packing. Teddy Bears!
Make your way to town this weekend and leave a teddy outside the Dail to signify your children

Facebook group here

Serious / Philosophical post alert!

2009-06-18T08:45:00.003+01:00

(Following on from my previous post) Myself and Duffo have known for sometime (obviously) that we were having another baby. Whilst this is *very* exciting for us unlike most people having a second child (or god forbid twins which happily is not the case!) our thoughts turn to the possibility of having another child with Down Syndrome.

We returned to the Rotunda who as always are excellent. We first had a scan in the EPU (Early Pregnancy Unit) where an initial scan showed all seemed well in that there was a baby in there alright and it had a heart beat and was moving about (always a plus).

A week or so later we returned to our consultant who referred us to do some testing in the hospital itself. The types of testing and risks were outlined very clearly. They range from a scan and bloods which are zero risk to the more 'riskier' tests. She explained it was best to start with the zero risk tests and then decide if we wanted to undertake the riskier tests. Now I would point out that we had decided in any event not to proceed to the riskier tests no matter what happened but this was our choice and I judge nobody for what they decide. Tricky area!

So the 'risk-free' testing involved another scan which focused on checking for characteristics of DS in our new baby. Of all the indicators they focussed predominantly on the fold at the back of the neck, the measurement in our case was well beneath the indicator level.

Next blood was taken whereby more indicators are looked for, the results of which come back next day along with a Paddy Power style statistical analysis. Age is a factor (Duffo is 21).

So fast forward to next day and I am in the car in town when Duffo calls to say Great News statistically the chances are near 2000-1 and we are both delighted! I hang up ecstatic and major guilt sweeps over me as I picture Ava Bear at home smiling at me. Would I be so devastated if I had another Ava? It is an odd mixed feeling to have.

The bottom line (and I am first and foremost a pragmatist) the reality is I want a brother or sister for Ava that will 'round' off our family. I like this idea of rounding as we have many new friends who have two kids one with DS and you know what that's what we want too. We have been lucky with Ava and her health but I will be honest and admit that I especially want a *healthy* child. Everyone wants that right?

News!

2009-06-10T19:35:00.002+01:00

Exciting news, we are officially expecting our second child. We are both delighted and of course apprehensive too.

Some tests and stuff we are going to to do and indeed not do but will write more on that in the coming weeks (as they may be of interest)

So in summary..yay!

HB Day @ Dundrum

2009-06-02T20:03:00.001+01:00

Cathal was there, charming young man

OMG the famous Nan P!

Hangin Out

Stop takin photos buddy

What have we been up to?

2009-05-05T21:41:00.002+01:00

I have been terrible about updating the blog due to

- Work (bloody work)
- We had work done on our house and so moved out for a few weeks
- Ava had a reaction to MMR which made for a few interesting days.

Just been catching up on the other blogs and am delighted to see Cathal is on the mend and saw some great snaps of him in the park on Facebook. I am also enjoying (if thats the right word) reading the 'journey' he had with his fab Mum and Dad. Well done guys, I dont know how you did it.

I have been (in the background) plodding away on my Lamh bugbear but am having limited success. Tried contacting Barry Andrews and HSE but got the ol Lamh standard response regurgiated back to me through their offices. Actually now Summer is here I must email and order my Lamh A Long DVD as they said it would be done around now? I will let you know how I get on.

In the meantime we have been having great crack with Ava, she is in flying form and long may it continue.

I Scream

2009-04-10T13:35:00.004+01:00

Happy Good Friday,

Got a nice mail from my brother who has two young sons Sam and Adam:-

This morning while I was getting ready Sam and Adam dashed into my room

Sam "Mummy there is a man talking on the radio about Down Syndrome Ireland"

Adam "it's been sponsored by HB Ice Cream!" I explained that Down Syndrome Ireland is a very large association that raises money all over Ireland to give support to children just like Ava.

Adam "We need to go and eat Ice Cream.... I think Ava would like that"

More information on the HB Ice Cream Sunday / Funday on the Down Syndrome Ireland website

Happy Birthday Ava Bear. One Today!!! Go Shorty!

2009-04-04T10:35:00.000+01:00

Haaaang on a Sec....

April 4th?......

It's My Birthday! Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay!

My Ava Bear is one year old today and I just can't believe it. What a year it has been. Myself and my (unbelievably cool) wife Duffo are so proud of our beautiful daughter (I know sickly sweet). Duffo has done an amazing job and Ava is a credit to her. A lot of work has been put in there and it has all paid off. My girls are a great team.

DS or not I have to say having kids is awesome. Today is a good opportunity to reflect. What started with a tough beginning and initial 'shock' has been all good since. We have been blessed that no major health problems have arisen. We have met some really fab people through our new circles and have some great new friends. I see these friendships as being super important in the future. Special shout out to my fellow blogger friends / readers and to Duffo and Ava's mother weekly group.

Finally in what I think should be a last tip of the hat to this time last year, ICU etc etc I want to say thanks again to our families + friends (esp the parents) for all their help esp. Carol super sister (tm).

In at attempt to make this post somewhat useful (as opposed to 100% sickly sweet) here is some stuff we have learned since Ava was born which may or may not be of use.

- Yes she has DS but hey ho get over it and move on. It's tough at the start but no matter what just get on with it.
- Get involved, read, go to talks, read some more. Lots of good information out there.
- Get a nuk for your child with DS, they are superb trust me,
- Get a Honey Bear Straw Cup
- Do lots and lots of talking direct to your childs face from early on it pays back in spades
- Down Syndrome Forums are a great resource.
- Sing!

So thats it , what a year, cheesy celebration photos to follow no doubt.

PS Cathal get better soon!

Grand Slam!

2009-03-23T17:34:00.004Z

Ok here we go....

Oh my god I cant take it, what was that penalty for ref?

Oh my God that kick isnt going to make it, its going to be....

Yay! In your face Warren! Ireland win. Bernard too! Yay!

Ava Meets the Mayor ( ! ) and other ramblings

2009-03-16T16:36:00.003Z

Couple of things to report:-

First up and most importantly a massive shout out to Nan P and Sylvaine, we are thinking of you guys and Cathal! Looking forward to seeing his cute little face again soon at Gymboree!

So Ava met the Mayor at at a photocall for Down Syndrome Day (March 21st) last week. Duffo brought her along to lend her support. I heard about this through the DS Dublin Branch

I also attended my first DS Dublin Branch monthly meeting which was interesting, will take one or two more to get the feel for it I reckon.

Also you can buy Lir Chocolates to help raise money for DS Dublin by calling Margaret Carroll on 086 1540652.

Also as I find my way through the DS society I came across Down Syndrome Centre who are only round the corner from my house! Met their CEO for a very informative chat and have to say I love their website and indeed their whole ethos. Must keep in touch with those guys.

To conclude this most rambling of posts the centre have what sounds like a fab talk with Ann Haig Wheeler on early intervention and more information on their site

Oh and finally I heard DS Ireland have no Chief Executive at the moment which seems kinda odd to me? One to watch I think....

Person Centered Planning (Long Post Alert)

2009-02-25T08:34:00.003Z

Morning, last night I attended a talk in Saint John of God Carmona on PCP or Person Centered Planning. The speaker was Ray Murray (Research Associate, National Institute for Intellectual Disability, Trinity College and Disability Consultant) who himself has a granddaughter with an intellectual disability.

There was a huge amount of information

What is PCP?
Basically PCP = planning. The objective is a 'positive desirable future' for your son or daughter. Key to this is having a foundation of total unconditional respect for the person. Take their opinions as to what they want. Create a plan with goals starting with the end goal in mind. This then gives a sense of control and responsibility to all involved and a clear sense of direction. Ray referenced how much like anything in life we are all better off when we plan and set goals (as long as we dont shelve the plan and dont follow it).

Some key points:-

This is not a one size fits all approach to people with special needs in a community rather it is a bespoke tailored service for each individual.
This plan is created by a circle of people, that is, parents, services, experts etc. Parents in some instances have opted to not be involved in the planning but rather observe.
Parents often know more in relation to their own child and therefore have invaluable input.
To implement PCP Services will need to change.

It is worth pointing out at this point that while some services do a variation of this kind of planning many apparently do not.

Case Study

To put PCP is context there was an extremely interesting case study, that of David in Galway. Ray became an advocate for this PCP trial whereby a plan was created specifically for David. He now lives near his parents in his own home and is visited by 3 part time care workers as well of course as by his parents. This has made a huge difference and all parties are much happier as they follow and refine the plan.

UK Leads the Way
Whilst this concept originated in the USA the UK is leading the way. Ray specifically mentioned the "Putting People First" Whitepaper.

In Conclusion
Ray hopes we will follow the UK. He sees PCP as the way forward. He said parents should be policital and fight for what they want.

Footnote
Prior to the talk I spoke to a lovely woman with a 15 year old son with DS. She gave me some sage advice which I took on board and found resonated during Ray's talk.

She told me keep your child in mainstream as long as you can. Make sure you trust your own instincts as the experts dont know your child as well as you do. Her child was moved out of mainstream too early and she had to fight to get him back in. She concluded that keep your child integrating as much as possible as when your child is happy they will learn more. When her sons desires were ignored the morale fell and he stopped trying....

Lamh Reply

2009-02-18T15:36:00.002Z

Ok so I have sent a brief reply to Lamh as below. Having reflected on this:-

I believe Lamh should be open-source
I believe I was not given an opportunity to meet with them and explain what I had in mind
I dont believe the Lamh A Long is what people are looking for

Anyway I will continue to watch out for this DVD and am also trying a different inroad.....

I am delighted to hear a DVD is planned for this year. All the parents I have spoken with are looking forward to ordering what we hope will be a high quality product this Summer. Can you confirm the actual date when we can place an order?

I would respectfully disagree that “the development of the type I described” would not “fulfill training needs” as I believe that without having actually met you and discussed my proposal in detail that you could actually understand it? I would add that a voluntary organization such as yourselves should welcome input and services from parents such as myself with resources.

In any event roll on the Summer and the Lamh DVD, I will be delighted to see the “Lamh-a-Song” DVD.

Lamh - The Response? "We are already doing it"

2009-02-12T17:25:00.006Z

Just to summarize I first contacted Lamh back in mid Oct 2008. I later suggested the DVD middle of January 2009 and had frequent communications from their Development and Liason Officer since.

It was argued for example that "Manual sign training is most effective when it is delivered face-to-face." Also when I mentioned people on the DS forums who had no access to training I was told "this issue can be answered by the Contract Training system, started in 2006, whereby groups of families can contract in a tutor themselves, so please pass on this information if required"

I got a response today. They are doing it already but it was a secret! Hmmmmmm.....

I would love to hear your comments on this and will draft my own response (to Lamh) in the coming days.

Please note the following before you read this and the section I have highlighted in bold below.

Kate08 from the DS Forums posted on this thread 22 Jan that "It's a great idea and I hope Lámh will go ahead with the DVD at last . I emailed the Lámh office almost five years ago about this , and was told that there were plans afoot to make a " Lámh Along " DVD of nursery rhymes with signs"

So five years later here is what just I got back from them today:-

9th February 2009

Dear Dave,

I’m responding to you on behalf of the Lámh Board of Directors. The Board would like to sincerely thank you for your letter and interest.

As mentioned previously in emails, Lámh identifies development goals for a period of time ahead, and several projects have already been planned long in advance. As you will see below, a DVD project is already planned for this year. A development of the type you described was previously undertaken and turned out to be a huge project that didn’t fulfil sign training needs. Hopefully the project Lámh has planned will be of great interest to you and the families you have been in contact with.

The project planned is a DVD of nursery rhymes/songs with signs, for young children who are using Lámh, so it’s very exciting! Lámh wasn’t in a position to make an announcement until the project was confirmed. The production has already begun. The DVD will be called ‘Lámh-a-song’ and the aim is that it will be available this summer. A huge amount of preparation has gone into this project already.

As discussed in previous emails, the teaching of signs in a face-to-face setting is highly valued, as is the opportunity that the Family Course gives to families to seek advice and support from both Tutors and other families. As you will know, the Lámh Family course is attended by families of children with different communication needs and it’s designed to provide the space for different issues and strategies to be discussed. As training is highly valued, recent developments have included:

§ Training 26 new Lámh Tutors from healthcare/education backgrounds;

§ Setting up a Contract Training system whereby groups or services can contract in a Lámh Tutor themselves to run training;

§ Piloting a new Training for Trainers course so that healthcare/education professionals can train as Family Course trainers in addition to the Tutor Training structure, thus increasing the amount of Family Course Trainers available.

Another development planned for this year is a review of vocabulary for families, looking at different age groups of Lámh users. This too is a very welcome development and will involve consultation with Lámh users and their families, teachers, speech therapists, Lámh Tutors and others.

Lámh would like to thank you again for your interest, to assure you that your proposal will be kept on file and we would hope to contact you again in the future in regard to this.

Kind regards,

Give us a Lamh (Long Post Alert)

2009-01-27T16:45:00.003Z

Evening All, I started a Lamh course last week. Off to my second course tonight. I had an idea recently that a Lamh DVD / Online Video would be a good idea because:-

Not everyone can make it to a Lamh course.
Most family members (grandparents etc) will not make it to a Lamh course (in my family anyway)
I would prefer to put my daughter (Ava bear) in front of a Lamh DVD for five minutes than Baby TV
My parents / sister even suggested this was a good idea.

As I work in Video production I would be well placed to get this made to a very high standard. If needs be I could produce a 'proof of concept' to prove as much.

I put a post on DS Forums (login required) and below is a synopsis of the responses (from people with DS Children)

I am sorry to say that the only people who (currently) dont think it is a good idea is Lamh themselves. I may post some of the actual correspondance later on but for the time being I am waiting for a formal reply from the Board.

Responses:-
I think it would be a great idea as LAMH needs to be learned by all the family and the extended family and it is not always possible (prob never) to get them all to do a course.Great thinking!! If I can be of any help let me know. Hope this works

A truly brilliant idea!!
Aisling x

I too LOVE this idea. I find it very very difficult and a big ask for all of the people important in my sons life to participate in this course as they are all already very much involved in babysitting REGULARLY for me for all the physio and speech and languages meetings we go to. I did attend one course with my husband and my sister and found it wonderful but think a dvd would be invaluable and a far far easier approach for myself, my family and our needs. I hope this does go ahead.

Brilliant idea. For family/babysitting reasons, I did our Lamh course on my own, and while Kevin's Dad is interested and wants to use Lamh signs he's depending on me to teach him 'second hand', as it were. If there was a DVD that the whole family could watch and have as reference it would be fantastic!

Hi Dave, I think that is a really good idea.
When we did a Lamh course last year, each parent took turns and did some of the signs and we were all videoed, so we could each have our own, 'local' copy. However, the SLT later said that Lamh had some copyright issues about this and we never got our dvd.
So, if you can get this organised, I think it would be great. I'm currently trying to show my daughters creche workers, some of the lamh signs and I have to say that, some of the photocopied drawings of the signs that we got are very unclear. It seems that you cant buy resources from the Lamh site, which is a pity.
So, great idea,
Lucy

Brilliant idea
and your only on day one of the course
you will be in full rant by the end
I did it last year and was really frustrated that no dvd existed and was all plans to do it myself, just for my family

again we were told that alot of the materials were copyrighted ...
here goes the rant
how can they be educational proposes ?
Lamh is tax payer funded ?
anyway of course better to do anything with their permission but home videos on you tube ??
while on the case also annoying that their is no fun stuff with Lamh
cartoons etc a few puppets no clowns mind you
anyway anything i can do to help drop me a line. I love dressing as a children tv presenter. I even own bright green astro turf flares.( joking)

I think this is a wonderful idea we did our lamh course last October and since have been showing our 5 year old who is then going into school and showing his teacher and friends in his class. We hope eventually that Adam will also go to this school and if the teachers and pupils are already prepped for him it will be in his best interests. So would definitely buy it for the school.

Have to agree how fab would a dvd be. My two year old is aadicted to tv especially something special but they are english sign which has some variation on lamh. He's been signing for at least 6 months and would love to encourage him to extend his reportoire. Also my mother in law has just moved over and is keen to learn the signs, but I don't thin she would do the course. Keep us updated or if there is anything we can do to help.

It's a great idea and I hope Lámh will go ahead with the DVD at last . I emailed the Lámh office almost five years ago about this , and was told that there were plans afoot to make a " Lámh Along " DVD of nursery rhymes with signs .

It's such a shame that they don't provide better resources . All I was given when I did the course was a few very badly printed cards with very limited vocabulary . I later got a photocopies of the new signs but as they say themselves , you can't learn properly from pictures .

My husband couldn't attend the course so he never learned and I was the only person who used the signs with our little girl . It used to frustrate everyone when she would be signing and no one else knew what she wanted , it defeated the purpose of teaching her Lámh . DD used to love the Sing and Sign DVDs from the ELC and Something Special too . My younger child picked up loads of signs from both but of course they are Makaton so the " wrong " signs . It bugged me that parent of typically developing kids could go to babysigning classes , and buy DVD to teach babysigning to thier babies, but the parents of babies who would most benefit from sign couldn't get training in Lámh .
However I'm totally convinced of the benefits of Lámh . I know parents who were reluctant to use it in case it prevented their child speaking , only to find their child didn't learn to talk very well anyway ( as a preschooler ) and could have really benefitted from having signs to communicate with

I know we'd use it for relatives & would be very interested in the "Lámh Along" DVD that Kate mentioned. We've seen the Makaton programs but are reluctant to use them as Ciarán might pick up some signs that we wouldn't understand & it'd just lead to confusion.

It's a fantastic idea, of course not everyone who is connected to the child is able to go to a course and a video would greatly improve the level of communication our children have with the people they interact with. The pre-school my little boy, Alex, goes to was very supportive and learned new signs as I brought them, but if they had a video it would be easy for them to searchh out the signs they need in particular circumstances and use them.
I really do hope this goes ahead and good luck.

Irish Times Article 20-01-09

2009-01-20T16:36:00.003Z

My sister gave me a heads on this article from todays Times, a lot of the parents sentiments resonate strongly with me personally:-

http://www.irishtimes.com/newspaper/health...2059661022.html

Down Syndrome Ireland is organising conferences for new parents to ensure they get all the support they need

FOR MANY expectant couples the thought that their child might have Down syndrome is a thought that fills them with dread, but that is not how the O’Neill family have experienced the reality of it.

In August 2007, Erica gave birth to Charlie in the National Maternity Hospital in Holles Street. Now 17 months old, Charlie has learned to communicate with sign language and looks happy and healthy.

When Charlie was born in Holles Street, the paediatrician set a positive tone from the beginning pointing to students with Down syndrome who recently completed a pioneering Trinity College Dublin course in contemporary living which will allow them to enter the world of work.

Robert and Erica, who live in Firhouse, south Dublin, say Charlie has been an overwhelmingly positive experience which has pushed them into doing things that they would never have done before and the only drawback has been cruel things that people have said, sometimes intentionally, more often unintentionally.

It is a common problem that people often do not know how to react when a child with a physical or intellectual disability is born. They don’t know what to say and often end up saying the wrong thing. Those who work in the area of Down syndrome advise against expressions like “sorry” or any other expression of commiserations towards the parents.

Other ill-advised comments include saying that the child is a gift from God, that they are special children or especially loving, saying that a child doesn’t look like he or she has Down syndrome or that their symptoms appear to be mild.

It is also not appropriate to say “Down syndrome child or children” as if the children involved were defined by their disability. The correct expression is children with Down syndrome.

“One particular person rang Robert and said ‘commiserations’ after having a baby,” says Erica. “The thing that upset me is you carry a baby for nine months, you go into labour, you have that child and people do not even say congratulations. Maybe things haven’t worked like many people might have thought but you still have a baby at the end of it.

“The least that people can do is say ‘congratulations’. People say to us, ‘it must be hard for you’, but it’s not. It’s as hard as you make it,” she says.

Robert says they resolved from the beginning to treat Charlie no different from their other two children, Heather (6) and Aidan (4).

“A friend of mine said to me around the time of his first birthday, ‘if God came down and clicked his finger and changed Charlie, would you want it’ and I said ‘definitely not’ because he would not be Charlie.

“We’ve fallen in love with him. I have the same expectations for him as I do for our other two children.”

Charlie attends Cheeverstown House, a centre for children with special needs, and Robert ran the Dublin City Marathon last year to raise funds for it. Running a marathon is something he would not have contemplated before Charlie was born.

“The gas thing is that people feel sorry for us. People are saying ‘God love them with a Down syndrome child’, but it is the complete opposite. We couldn’t be happier,” Robert says.

Though the O’Neills are determined to be positive and optimistic about having a child with Down syndrome, many parents struggle with the experience.

This weekend Down Syndrome Ireland is hosting a conference for new parents who have a child with Down syndrome under the age of two.

The weekend at the Grand Hotel in Malahide is now sold out with 50 couples taking part. Down Syndrome Ireland intends to host another two conferences for new parents in 2009 such is the demand.

Down Syndrome Ireland chief executive John Lindsay says: “The one thing that comes across strongly is new parents need all the support they can get in the early years.

“We need to inform them about all the early intervention teams available from the HSE. With the odd gap here and there the service is fantastic throughout the country. Parents need to know how to access them.”

The weekend is designed to focus on the parents whose needs are often forgotten about when a child with Down syndrome is born.

Counsellor May Gannon, who will advise the couples taking part, says parents of children with Down syndrome often struggle with feelings of guilt because they do not regard the birth experience as being as positive as they had expected.

“Nobody celebrates the birth of a child with Down syndrome in the same way. They don’t feel the same joy. There is a lot of concern and worry about the child because you’re plunged into a world of disability that they don’t know anything about,” she says.

“I will be emphasising that they have a baby first and foremost and that they do experience different feelings at the beginning. Any negative feelings they experience are actually a positive sign that they are coming to terms with the situation.”

Though the chances of having a baby with Down syndrome at one in 600 is relatively high in medical terms, most parents do not even consider the possibility.

“The number of parents who tell me it never occurred to them is far more than those who considered it as a possibility. Those who do, say they will deal with it when it happens, but it is something that is difficult to prepare for. It takes a huge commitment. There are different care issues around, but you do exactly as you do with other children, just more of it.”

Gannon says children with the condition are often subjected to stereotyping both positively and negatively which benefits neither them nor their parents.

On the one level some people regard children with Down syndrome as intellectually and physically incapable in every respect despite the fact that the majority of them now attend mainstream schools.

On the other hand, she says children with Down syndrome are stereotyped as being veritable angels and their parents are told to accept a “child from God” – an expression which has its roots in the old Irish phrase “duine le Dia” or “people of God”.

“Parents who are told that the child they have with Down syndrome is a gift from God should say to the person who says that, ‘you take it and look after it’. They don’t feel that.

“Having said that, the majority of families say children with Down syndrome bring a lot of gifts to the family and they can contribute to society in a real way. They have a contribution to make and it is not all negative,” she says.

This weekend’s conference begins an extremely important year for Down Syndrome Ireland. Last year it won the right to host the 10th World Down Syndrome Congress which will be held at Dublin City University from August 19th to 22nd.

It will have as its theme Lifelong Living and Learning , a recognition that the life expectations of children with Down syndrome is radically different to what it was even 10 years ago.

New parents interested in taking part in future Conferences for New Parents should contact Down Syndrome Ireland at 01 426 6500 or 1890 374 374

Grand Parents

2009-01-15T20:53:00.003Z

So I posted previously about the Grandparents Information Day that took place yesterday. Congrats to Nan P and of course DS Ireland for what I gather was a very productive event.

My parents went (pictured here with Ava Bear over Xmas) and found it very informative. There were discussions on general health, communications and practical information and advice. Overall they felt they learned a lot and found it most worthwhile

They chatted with some of the facilitators and also some of the other grandparents some of which had travelled to Dublin especially for the event. Again how lucky we are to be in Dublin with all the great facilities and support.

Clap Handies Clap Handies Clap Clap Clap

2009-01-09T19:58:00.002Z

Go Shorty....It's my Birthday

2009-01-03T16:11:00.003Z

Southdublindad's birthday today! So Happy Birthday to me! A lovely first Xmas with Ava Bear and Duffo. We celebrated Duffo's '21st' Birthday yesterday too (our birthdays are right beside each other!) Xmas was full of lovely walks with Ava Bear and just hanging out

Ava is now doing 'clap handies' and standing up (!) so we are delighted. She also drinks from a straw now which was a hard fought battle for Duffo but she has it totally sussed now.

Anyway Happy New to you all and thanks for reading my blog! I know some of you have some big stuff coming down the line this year but rest assured all will be well.

DS Ireland Grandparents Day

2008-12-30T09:19:00.002Z

Morning! Found about this from the most excellent Nan P, apologies for delay in posting, have been doing the Xmas thing :)

DOWN SYNDROME IRELAND GRANDPARENTS INFORMATION DAY

The Trinity Room.
The Gresham Hotel,
O’Connell St.,
Dublin 1.

on 14th January 2009 - 10.30am – 3.30pm

Facilitated by:

May Gannon - Counsellor.
Joan Murphy - Clinical Co-ordinator.
Grainne Murphy - Independence Officer.
Pascale Claes - Grandmother.

ALL GRANDPARENTS WHO HAVE A GRANDCHILD WITH DOWN SYNDROME ARE WELCOME.

Please phone the National Office on 01 4266500 or email info@downsyndrome.ie to confirm your place.

Santa : Episode II

2008-12-22T20:31:00.003Z

Happy Christmas Everyone!

We had a lovely morning in Kildarton with all Ava's schoolfriends and their parents. Santa was there as you can see and once again Ava met the man himself for a chat and a cuddle.

Again Kildarton staff are so so nice and it was a great event. I realised this morning how many people we now know in this 'elite club' we are in. My parents and my sisters family were there too which made it extra special, they have been such a great help since madam was born especially my sister Carol who is a true legend.

The best part of being at these mornings is to see how older kids are coming along and actually interacting with them and watching them flying about. I love it!

Also we got Ava a Nuk from the DS Ireland website and as she is teething she loves it! She has been a bit cranky of late with the ol teething but she loves this.

Anyway have a superb Xmas and here is to 2009! So far so good for our family and hope you all have a great one.

PS Can we take a moment to acknowledge one of my fave posts ever! Dr Cox!

Laughing

2008-12-10T10:55:00.001Z

Shameless video of Ava laughing!

DS Dublin Xmas Party 2008

2008-12-07T21:48:00.007Z

We had a lovely time today at the DS Dublin Xmas Party 2008. It was in the Garda Club on Harrington Road and was very well organised.

Ava put on her special Xmas outfit and her red shiny shoes. Also she had her new Xara winter coat (not pictured) she got from her Grandma.

When we got there we met loads of folk we knew including all the gang from the DS forum weekly mums meeting and also some Kildarton folk. They had a magician and elf DJ and of course the man himself...Santa!

Ava met Santa for the first time and got a selection box present which Duffo and I are going to look after.

A great day and well done to the organisers like Debbie who I met for the first time. I plan to make the next DS Dublin meeting and get more involved.

Monday Musings for Dec 1st

2008-12-01T21:37:00.004Z

Irelaaaaand! Ava Bear watched the rugby but thought Ireland were poor and lacked passion. Duffo got her the jersey which looks fab I am sure you will agree. She might get a game yet.

So it is a very cold Dec 1st and I am just back from a failed attempt to go to my first DS Dublin meeting! I was there at the right time at the right place but nobody showed? Tis a mystery no doubt. Anyway we shall see what went wrong in the coming days (I hope).

Somehow managed to miss The Muse blog and so have belatedly added it to my list and have been reading through it. Sorry :(

This here is Ava's winter gear. She is doing great and is 8 months old this week. Ava had her developmental check up and did great.

Recently we noticed her eye was turning slightly inward and were concerned. We have obv have checked this with the folk who know and it is nothing to worry about as apparently they grow out of it...phew!

Anyway all good here, looking forward to Ava's first Xmas!

BBC Radio 4 Tonight 8pm

2008-11-24T09:40:00.003Z

Morning! Woke up this morning and saw the end of an item about DS on the BBC Breakfast program.

Missed the actual segment itself but they were seemingly doing a promo about a radio show tonight on BBC Radio 4 (you can listen here http://www.bbc.co.uk/iplayer/radio/bbc_radio_four/)

Born with Down's-Born with Down's
8:00 pm - 8:30 pm "Felicity Finch finds out why more babies are being born with Down's syndrome."

If it is any good I will try and podcast it here for folk to listen at leisure.

Updated http://www.bbc.co.uk/iplayer/console/b00fkx0m

Tis the Season...

2008-11-17T12:06:00.002Z

Happy Monday!

Xmas is coming, why not go here and buy some Down Syndrome Ireland Xmas cards?

I ordered yesterday and they have already shipped them.

Go on you know you want to....

Mums get together, eat cakes and stuff...

2008-11-15T21:20:00.000Z

Ok so this is really just another shameless 'photo' post (kind of) :)

My wife, Duffo, is part of a group that meet weekly in each others houses with the kids. They met and arranged it through the www.downsyndrome.ie forums which shows what a valuable resource they are.

It is really nice to get the kids together and I just love this photo of Ava (bear), Noah and Cathal. Photo by Cathals Mum.

Also I wanna shamlessly paste a post duffo found on Cathals Big Adventure which I thought was super cool. This was a comment in reply to a photo of the 'Gang' at the last weekly meeting.

The picture of "the gang" brings me back to 1982, when my brother was two. Services and networks were poor so my Mum contacted new parents of children with Downs Syndrome and they came to our house for advice and a chat. On many occasions I came home to find a little "gang" in our sitting room with their anxious parents.
My brother is now 28 and our little visitors of 1982 and beyond are his best friends.
Keep up the great work

Also I notice Cathal has an Xbox 360 and likes comics....most excellent....

Ava's Ticker Checkup Part II (Back to Crumlin)

2008-11-04T20:45:00.003Z

Ok so back in May we had been out to Crumlin to see Dr Franklin. Today was our follow up and although it was somewhat routine there was always that worry in the back of our mind.

Anyway the good news was that there is now only one very small hole left and it is so tiny there is nothing to worry about. Better again is it will almost certainly close up.

Once again Dr Franklin was super nice. The HSE should really consider moving this leading cardiologist out of her prefab portacabin with inadequate heating some day soon. Oh and the car parking still sucks bigtime. I cant imagine how frustrating this is if you were going there regularly for something serious.

And finally myself and the lovely Duffo fully realise how lucky we are that Ava has dodged this particular bullet. If she did have a problem however I would have total confidence in Dr Franklin.

That's My Daughter in the Water

2008-11-03T15:42:00.004Z

So as previously documented Ava has been swimming already with her Mum and Dad. Well this morning was my first "Dad's Morning" at Carmona House with Ava. We all took to the pool with our little ones and did the usual songs. The songs were however accompanied by lots of movement in the water and Ava loved it. The facilities and staff there are really top class.

Afterwards the fathers got together for coffee in another part of Carmona. We briefly discussed DS related matters and then moved on to Top Gear, the economy and of course property prices.

It is interesting to go to these events as it is very easy to sit at home with Ava and forget the larger context. I have to admit trips to Carmona do make me think about the long term. I do love to see other kids who are two and stuff and try and predict what Ava will be like. Anyway a great day!

Ava = Ladybug!

2008-11-01T17:29:00.002Z

Happy Halloween.

Yes I should be posting about the budget, u-turns and the like but unfortunately work has just been crazy :(

In the meantime here is a shameless Halloween Photo of Ava Bear as a ladybug! They have whiskers now apparently :)

Mobile Phone Video

2008-10-31T15:56:00.001Z

Great mobile phone video from Duffo

Real Life....

2008-10-28T20:41:00.002Z

Ok so I have been terrible with updating the blog but hey life is busy (in anyways)!

Ava (or "Ava Bear" as we call her) is now 7 months old! All I can say that she is doing just great. She could do with rockin out a bit of the old "Da Da" speak and a repeat performance of her first ever rollover (or "roly poly") would be welcomed but we aint pushy!

Every day she is more of a little girl and me and the Duffo are just really enjoying life with her. You really havent lived until you go in to pick her up from her cot and she smiles up at you, it is quite literally like Xmas every day in that regard (seriously).

Oh and to that one person (who shall remain nameless) who was very critical of parents being 'like all positive' when their DS kids are babies I pity you. You have to enjoy every moment and we will continue to do so. Anyway she is our daughter and we dont over focus on the DS to be honest and so far thats working out :)

Oh and the photo is off a superb pair of Vans shoes from our great friends Martin and Audrey (who have the cutest daughter Kalia). They are just....so....cool non?

Shout! Text "Shout" to 57502!

2008-10-20T09:24:00.004+01:00

Ok so I have been major busy recently and therefore the blog has not been updated much. I intend to do more updates this week!

Anyway Nan P quite rightly pointed out that I should highlight the SHOUT programme! Text "SHOUT" TO 57502. It costs only €2. The Shout Programme" is designed to train and develop adults with Down syndrome to speak for themselves.

An Interesting Article in Yesterdays Times

2008-10-08T09:33:00.002+01:00

This caught my attention in yesterdays Irish Times 07/10/08. That said while it is of interest now I am the proud father of a child with DS my (personal) feelings on testing are somewhat mixed.

Safer Prenatal Blood Test found for Down Syndrome

WASHINGTON – A prenatal blood test can be used to determine if an unborn baby has Down syndrome without the small risk to the foetus posed by invasive testing methods such as amniocentesis, US researchers said yesterday.

Researchers led by Stephen Quake of Stanford University in California created a way to look for the extra chromosomes that cause Down syndrome and similar birth detects in the tiny amounts of foetal DNA that circulate in the mother’s blood.

The test, which requires a small blood sample from the mother, is safer than amniocentesis, in which a needle is inserted into the uterus, and can be done earlier in a pregnancy.

Down syndrome, which causes mental retardation and other problems, is caused when a child has three copies instead of the normal two of chromosome 21. The test also detects other chromosomal conditions such as Edward syndrome, which kills half of babies in the first week of life and Patau syndrome, which kills more than 80 per cent of children in infancy.

Mr Quake’s team demonstrated the accuracy of the new genetic test in a small study involving 18 women. It accurately identified the nine women with a Down syndrome pregnancy and three others with foetuses with different chromosomal disorders, according to the journal Proceedings of the National Academy of Sciences.

“It’s the first universal, noninvasive test for Downs syndrome. So this should be the first step in putting an end to invasive testing procedures like amniocentesis and chorionic villus sampling, Mr Quake said. – (Reuters)

© 2008 The Irish Times

Back from Holidays!

2008-09-29T21:08:00.011+01:00

Back from a fab holiday in Portugal (specifically here, would highly recommend it). Ava was good as gold on the plane on the way to Portugal and slept most of the way back too!

Airports were semi-interesting as it was so busy both ways and you do get the odd funny look from people but sure what can you do? Certainly doesn't bother me or Duffo (super Mom) one little bit.

Ava at the Villa pool with her Dad in her swimming outfit shortly before being put in the coldy pool and freaking out :)

On reflection this was not such a good idea as the water was that bit too cold and man did she freak out! This also led to the odd freak out during her nightly bath as she developed a temporary aversion to water although thankfully this soon went away!

Ava hanging out with Duffo. She got non stop attention all week and loved every minute of it. We saw a huge change in her over the holidays as she is getting really grown up and animated.

Miss her now I am back to work and don't see her every day. Duffo sends me super MMS snaps of her anyway so I see whats going on.

This was more like it, Ava *loved* the indoor (heated) pool. She pushed a ball round the pool and chased a small plastic boat! This was her first swim ever and we all really enjoyed it

Overall the holiday was really great, we needed it badly and it was great to get away! Back to reality now and already getting a poxy cold :(

Almost Holiday Time!

2008-09-17T13:42:00.001+01:00

Here is the actual passport for Ava, this may well be the cutest passport in Irish history (well I would say that)

Where There's a Will

2008-09-10T10:54:00.002+01:00

Last night I attended a talk organised by Carmona Services at St John of Gods Glenageary. This talk specifically concerned the importance of making a will *especially* when you have a child with special needs.

The presentation was given by a solicitor John Costello who is also involved in St Michaels House and has a brother who is autistic and in full time care.

I must say I found the talk highly beneficial and this post is *my* interpretation of the information provided from my personal perspective.

Should this post already be too long here is the main point(s):-

Make a Will, not next week, contact your / a solicitor today!

Special needs or not make a will immediately. Contact a solicitor and do it now ! Get it? If you don't and you die bad things can happen (seriously some of his examples were frightening)
Appoint trustees. A trustee is an administrator of finances
Appoint guardians. A guardian is concerned with welfare of the child.
Consider putting in place a Discretionary Trust. The speaker said that this is vitally important however I am doing this de facto through my trustees
Consider a letter of wishes which outlines specific requirements.

Now I will take questions, yes you down the back?

First Day at School

2008-09-08T09:30:00.000+01:00

Ava started school today in Kildarton Glenageary! I was tied up with work all day so the Duffo took her. I am going to go up next Monday which I am very excited about. This is the rather stylish outfit she wore.

Duffo and Ava learned loads more signs including "love", "grandma", "teddy bear" and "friend".

Also got an invite to a talk on making a will tonight which I will write up tomorrow.

Maisie-Mail

2008-09-06T18:46:00.001+01:00

Got a nice email from our fab friend (one of many) Maisie this morning. You may remember Maisie from such blog posts as "Auntie Maisie and the Fancy Shoes ? Anyway here it is, a lovely email from a lovely lady:-

"hey - just wanted to tell you i just looked at all the stuff in the blog - WOW so emotional and honest and fab and i just feel we have been such a big part of her life too since the moment in the eagle house when you told me i was going to become an auntie right up to now and forever hopefully - every step of the way that you describe is so clear to me (well the parts i was in obv) and how amazing is it now to read (and laugh) about the jazz hands singing and dancing and related to each other stuff - all the things that seemed so insensitive at the time and now you realise they are all part of ava's story and it proves that it's far from tears and bad things around that child it's about laughter and joy and fun and smiles - (no jazz hands) so i'm very proud to know her and be part of her life - and as for you two - you are both just fab parents and even though she can't indicate it to you yet - ava knows that too..............xx"

Ava Is Goin on her Holidays

2008-09-05T10:32:00.000+01:00

Yup Ava is going to Portugal end of the Month for her first Holiday.

Here is her passport photo which we stuck on the fridge and it makes us laugh daily :)

People dropping by...in several ways

2008-09-04T15:06:00.000+01:00

So I installed Google Analytics (the big nerd that I am) when I started this blog and have just checked my stats and people are actually visiting here in decent numbers, yay!

This has inspired me to do some serious updates this weekend and also update my links and blogroll so I can send on traffic and people as other people are sending me traffic.

In other news:-

Duffo has quit her big glam job to stay home and look after Ava.
Duffo has gone to meet the other Mum's from the Down Syndrome Ireland forums. She brought her legendary chocolate cake. I am secretly hoping she returns with some for poor old Dad.

Kildarton, Signs and a bit of the ol' Reachin'

2008-09-02T21:03:00.001+01:00

So Ava finally starts "early services" in Kildarton House in Glenageary next Monday. Myself, Ava and Duffo are super (duper) lucky to live not a quarter mile from Kildarton! We are also only a mile from Carmona St John of Gods so every day we see people with Down Syndrome (of all ages) coming and going. We also have a superb social worker, physios and everyone at Kildarton is really cool.

Kildarton is superb, it even has a beautiful garden designed by Diarmuid Gavin. We did a quick visit there a while back and it was very emotional to see all these gorgeous kids sitting in a circle singing thinking Ava will be one of them soon. They had an open day and we got to hang out with other parents and being Dublin we recognised some of them.

Also today we got our first 'signs' to do with Ava. They are:-

Dad
Mum
Thank You
Hi

Finally we are trying to get madam to roll over and are getting her to reach for rattles and stuff. She is doing well but prefers to keep pulling up her jumper :)

Down Syndrome Forums

2008-08-25T21:04:00.000+01:00

The Down Syndrome Ireland Forums are a great resource. Both myself and Duffo are members. I find the forums a real help and really enjoy some of the blogs I have found on there.

Today Duffo went to a meeting of mothers from the forum, the first one was hosted by Cathal's mother (of Cathal's adventure blog) in Crumlin and there is another one Thursday Sept 4th.

Be warned as Duffo is busting out her infamous chocolate cake for the next one.

Ava's Christening

2008-08-03T14:12:00.000+01:00

We had a fab Christening for Ava on August 3rd. Our good friend Father Declan Doyle (best priest ever) was master of ceremonies and we had a nice party afterwards in the Purty Kitchen in Dun Laoghaire thanks to our friend Buzz.

Bouncey Bouncey = Laughs

2008-07-29T14:15:00.000+01:00

This video is courtesy of Uncle Scott and Auntie Norma. This is Duffo doing the tried and testing "Bouncey Bouncey" which usually results in a laugh and often times the giggles! Moments like this make life worth living!

And the person not going through to the next round is....................

2008-05-06T19:08:00.000+01:00

This was one of those ones that sneaks up on you. We had met Dr Orla Franklin (nice lady) briefly in the Rotunda and were told that yes the baby we ordered had in fact three small heart holes but they were nothing to worry about. Just as well as we had binned the receipt.

We arrived for a follow up in Crumlin (which is Irish for 'Hospital with no parking') and began the test.

What followed was 15 minutes of silence and stomach churning tension while Dr Franklin scanned Ava's heart. Myself and Duffo started to look at each other like "something is wrong here". At the end she gave us a very positive diagnosis as some of the holes were already closed! Hurrah.

That was good laugh, Dr Franklin would make a good X Factor judge if the whole heart expert thing doesnt work out.

Baby Ava Journey Video

2008-05-03T15:09:00.000+01:00

After a few weeks at home and all settled in I put this little clip together.

Home is where the Heart (with 3 holes) is..

2008-04-18T15:04:00.000+01:00

Yay! April 18th and we are home! No more feeding tubes and ICU beeps!

The super family had our house immaculate and full of food and flowers. We were beyond happy to be home. My nieces and nephews made signs and me and the Duffo had some champers.

We had such a good 2 week boot camp with the ICU nurses that it was a breeze. We were expert nappy / bath / feed people!

Auntie Masie and the Fancy Shoes

2008-04-07T14:10:00.000+01:00

Auntie Caroline aka Maisie brought some incredibly fancy shoes in so I dashed down and let madam try them on real quick. I washed my hands before and afterwards so dont worry.

Two Weeks in Jurys / ICU

2008-04-06T14:32:00.000+01:00

So for two full weeks we worked on the feeding in the ICU.

Duffo improved and we moved into the Jury's across the street for the fortnight. The Rotunda sent really nice social workers and again our families were superb. Everyone was such a great help.

Ava slept for most of it.

We were given the all clear on her heart with a follow up to come in Crumlin.

Some highlights from the two week ICU extravanagza:-

The Parnell junkies, how we miss you so.
A father to be arriving at Rotunda at 10am drinking beer. God help his child, coming to a robbery near you.
Being asked by an Indian ICU Nurse if myself and Duffo "were related"*
Getting flashed in the hotel bar by a semi naked Geordie Hen. "Wanna buy a watch?"

* We are not related thanks very much

Call Me Ava

2008-04-06T14:04:00.000+01:00

I have discovered that life in ICU is not just about beeping sounds and washing your hands repeatedly. There is a nice tradition where people make little signs on the incubators with the babies name on it. I mentioned this to super niece Rachel who made one, she is a designer of the future and here is her handy work taped to Ava's ICU incubator. Have to go wash my hands, be right back.

ICU? Heart Problems? Huh?

2008-04-05T23:21:00.000+01:00

So Ava went straight to ICU to learn how to feed.

Myself and the Duffo sat in our room (watching Judge Judy) trying to adjust to our new reality. Our friends and families were without exception awesome. Poor Duffo was post-op so was stuck in bed. I would divide my time between Jurys Parnell Street, Duffo's Room and the ICU.

We were told today that Ava may have a heart problem and maybe a stomach issue? What? Can I please go back to where I was yesterday? I would like regular old DS back now as I am not too keen on heart conditions etc thanks very much. It transpired she had 3 small holes in her heart which would sort themselves out and for that we were very thankful.

Ava spent two full weeks in ICU where between us all we taught her how to feed. She had a feeding tube and it was a hard slog for all of us to get to the point where she could get home. The day we left we were ecstatic! We will be eternally grateful to the nurses and doctors of the Rotunda

Here is a video of Ava when she was in the ICU complete with feeding tube which were 'in' at the time.

"They love singing and dancing!" (Jazz Hands)

2008-04-04T22:50:00.000+01:00

Ava Charlotte was born in the Rotunda the afternoon of April 4th 2008. She weighed 7 pounds 7 ounces.

I have to be honest and admit that I had a strong instinct that she was going to be Down Syndrome and when she finally arrived into the world (for me) it was more a confirmation than a total shock. I think there was something I spotted in the last scan before she was born rather than a Derek Acora style premonition.

I have reflected upon this difficult day often and remember every aspect of the the delivery room in detail. We were obviously very upset but am proud of how myself and Duffo handled it.

There was a most bizarre moment worthy of mention however. As I sat talking with Duffo (who was lying on a table following the C-Section being stitched up) a very nice foreign doctor in a headscarf appeared at the other side of the table. She uttered the immortal words as some form of consolation:-

"They (DS babies) love singing and dancing"

She did so with a large smile on her face and accompanied the statement with a full on 'jazz hands' action while rocking left and right in a 'dancey' movement.

This was barely minutes after we were told and we often look back on this and laugh (Seriously)

Note I am not making fun of this excellent doctor but it was a most bizarre moment. I have nothing but praise for the Rotunda and am a registered "Friend of the Rotunda".