Today in Hamleys - The Mosaic takes shape

The Hamley's Staff doing good for Autism, can't you see the halo on that guys head?

Where did I put my piece?

We did this one!
 (Come on Ireland!)

Partee!

Jazzy's Boy Doing Good for Irish Autism!

So what else do we do?

The Teddies were sponsored by Hamleys - are they not cute?



Irish children's Charity To Russia With Love, who have been working in Russia for 10 years now, recently teamed up with the IAA in response to a lack of specialist help available in Russia for children with Autism - to organise a trip to Russia.

To Russia With Love were approached by specialist teams in Russia seeking advice in this area and were delighted to work with the IAA team on this project. 

The Irish group, which included psychologists, parents of Irish Autistic Children, interpreters, and representatives from both organisations. The group left Dublin on the 14th January this year and stayed for 7 days visiting several orphanages. 

Debbie Deegan the funder & Managing Director of To Russia With Love and Keith Duffy the patron of IAA met with Russian parents of children with autism as well as those working to educate and treat the condition to share experiences and insights. The group also included our CEO Kevin Whelan and the Director of the Drogheda ABACAS ABA school. 

"To Russia with Love has always advocated the sharing of knowledge in child development between Ireland and Russia and we feel that the expertise of the IAA will be of great benefit to Russian children, their parents, those working in the field as well as the children of the 12 orphanages we work with."

Over the seven days, the group met with groups of parents of children with Autism and provided seminars to professionals working in the area of Autism. They also visited the orphanages where To Russia with Love provide care and support to Russian orphans and the Children's Psychiatric Hospital in Bryansk, bringing toys donated by Hamleys who sponsored the joint project.

This joint project greatly highlighted awareness of the plight of Autistic Children in Russia and was very well received by all involved. Debbie Deegan and Keith Duffy also gave interviews to Russian TV, which will be seen by all across Russia, which will further enhance the success of the trip.

To Russia With Love has worked with over 5,000 orphaned and abandoned children in Russia since its inception in 1998 and there are still many more who need our help. Without the ongoing support of the Irish public it will not be possible for us to continue our work...to get involved please log onto www.torussiawithlove.ie or call us on 01-8532920 for further information.

You should also click on the link to the Royal Concert Hall  And go and see Gay Byrne host a special version of the "Late Late Show" TONIGHT, the 25th of February at 8pm.

On the night, Gaybo will interview our own Keith Duffy to talk about the trip to Russia and Brendan O’ Connor will prove he’s a star with his amazing Elvis impersonation, accompanied by Ronan Johnston on the piano. Inspirational founder of To Russia with Love, Debbie Deegan, will also share her incredible personal journey from adopting a Russian orphan to setting up To Russia with Love. 

All proceeds on the night will go directly to the charity to continue providing essential supports to Russian orphans. Be part of something historic, DON'T MISS IT!

xx

I've added more photos -Come and join me on Facebook and view them

We have raised €2,500 so far, only 7,500 tiny little squares of lego to go....



I have added more albums to the Irish Autism Facebook Album with some lovely snapshots of Keith Duffy in Russia, The Hamleys Mosaic* and some fantastic activities in Drogheda, thanks to The Abacas Group there who are very active little fundraisers and Facebookers.


You may not be able to organise child-care or whatever to come to the next meeting in Mullingar (this Saturday at 11am - all welcome and that means not just the group reps); but you can join us for a cyber meeting any time on Facebook and tell us what YOU are doing right now.

Me? I'm going for lunch.
xx

*the mosaic is open all week and will be on TV3s Xpose this Wednesday.  So come down to Dundrum and bring your €1 and then you can say " I did that one!"


Completing the Mosaic at Hamleys

Today in Hamleys Dundrum

This little cutie was so sassy I just had to take her picture


We just put this piece up! and helped children with autism and their parents.


Two such photogenic young drummies helping Irish Autism.

Today I volunteered to sell lego pieces at the Irish Autism Mosaic in Hamleys at Dundrum Town Centre. They have set out a template for 10,000 pieces of lego which at one euro a piece means a lot of help for Irish Autism. This is a national fundraiser which means that all proceeds will go towards the National Office and projects such as Solas Diagnostics, Parent Support and Counselling, The National Advocacy Service and our information pipelines. It was great fun and a great way to inform people about Irish Autism Action and the work we do, and about autism generally.  Many of the kids who bought a piece and placed it on the mosaic had no idea, but many did and it was on behalf or a nephew or cousin or even a brother and sister that they were helping out.

It was hard to tell up close but I believe it is some kind of a Star Wars Jet Fighter thingie. Or so I was told by some of the earnest young men coming out of the scale models section of the store - who all bought pieces and put them up - Very precisely.

Hopefully it will be a lot more recognisable tomorrow when the promotion finishes. If you want to be a part of it, get into Hamleys before 7pm Tomorrow, Sunday 22nd of February and bring your euros.

Thankyou to Hamleys for coming up with the idea and setting it all up for us, and to all of you who have bought a piece.

Thankyou also to all the volunteers who manned the stand, some of whom drove long distances and gave up hard earned respite from kids of their own, to lend a hand.

xx

UPDATE: The weekend raised 2,500 squids for our national projects. That means that we sold 2,500 individual pieces of lego which were placed up on the board in roughly the right spot. There are 7,500 left to go up so get down to Hamleys this week and be a part of something big VERY BIG.
The MOSAIC (thankyou Cas) will be featured on the Republic's TV3 show "XPOSE" 
this Wednesday!

A fine night in Drogheda

Jacinta from Abacas Drogheda gives a shout out to Martin from Ballymount



From the Evening herald - re Valentine Ball

Stars reveal their Valentine's Day surprises

Herald.ie WebSearch By Lorna Nolan


Saturday February 14 2009

LOVE was truly in the air for Ireland's favourite celebrity couples
today as they pulled out all the stops to mark Valentine's Day in style.

While years gone by have seen many of our top stars high-tail it out of
Dublin for the romantic holiday, it seems this year they'll be
whispering sweet nothings to one another closer to home.

And the reason, of course, the much-anticipated IFTA awards, set to take
place at the Burlington Hotel tonight.

Among those who'll be forsaking a cosy candlelit dinner for two to
attend the exclusive event will be business partners and long-time
couple Jackie Lavin and Bill Cullen, whose hit show The Apprentice has
been nominated in the Entertainment category...................

Meanwhile showbiz guru Lorraine Keane will be leaving the bright lights
of the city and the star-studded IFTAS behind to a attend a charity ball
in Drogheda with her husband, Peter Devlin.

"I'm a long-time patron of the Irish Autism Action charity," she told
the Herald. "They've been planning this night for ages so I wouldn't
have missed it for the world.

"I had committed to it months before I even knew the IFTAs were on
February 14," she added.

The glamorous Xpose frontwoman will be joined at her table by a number
of big names, including fellow TV3 man Martin King and his wife as well
as RTE presenter Brian Ormond and his girlfriend, Assets model Pippa
O'Connor............


And not to be outdone Michelle Heaton said she is expecting lots of nice
surprises from her gorgeous other half, Hugh Hanley

- Lorna Nolan





For more photos please go here and check out our facebook page

Yummy Drummies Arise! Irish Autism Action Needs You!

Okay, so it looks like he's robbing a car but that is Boo wearing Abercrombie, Ralph and my Uggs to represent that unique Dublin tribe - The Yummy Drummy. (the pyjama pants are another story but he wouldn't put on my skinny jeans)

We have a great opportunity to fundraise in the Dundrum Town Centre from Thursday of this week (Feb 19th) until Sunday (Feb 22nd)

IAA are allowed 2 buckets collectors at any one time to collect for IAA in the Shopping Centre.

This is part of the launch of Hamley’s Toy Store choosing IAA as charity of choice -

The launch will take place on Thursday at 2pm with Keith Duffy and a press call


On Thursday, we need three pairs of helpers between 12.30 – 6.30. for a couple of hours each.

On Friday, we need people to from 9am to 9pm and on Saturday and Sunday from 9am to 7pm.

Now I realise that most of us don't get out of bed for less than $10,000 per day, but it would be great to get some collectors during the busier hours at least (say 12 to 6pm each day) you then you can go off and do Zara, H&M, maybe BT2 and get a Storbucks afterwards, Roysh?

All funds will go towards national projects like diagnosis, parent support and counselling and advocacy services for parents in need of a helping hand. We also have a pilot project for respite and home support which we desperately need to get moving. People need this.

Ironically, the people who need this are up to their eyeballs with kids on the half-term break. So we need you.

If you can help, please call Colette Charles in the National office on - 044-9331609, or Text me on 086 0486249. Don't phone, I won't be able to pick up until Thursday!

And if you can't help but you know of a teenager doing Transition Year, whose school might be able to help then please give the supervising teacher a call and put us in touch. We really need as many hands as possible.

Hope to see you there - we can do Harvey Nicks for lunch afterwards darling!

News Clinks - (Click on the Link!)


 Sharon of The Voyage made the papers this week - and hopefully educated another sector of the community about how unacceptable the recent Action for Children advertisements are. You can join her facebook group here.

From my Blogsister - (language warning):

Watch this - "How's Your News" A new show by the creators of South Park - written performed and directed by people with mental disabilities.  Language and Gross Out Humor Warning





 
Don't watch it if you are easily offended by old fashioned attitudes to mental disabilities and autism, so called "savants" - and Dick Clark.


Watch The Rainman Twins [Part 1]  |  View More Free Videos Online at Veoh.com


Temple Grandin is playing Dublin in March - more details soon or email autism@isa.iol.ie

And don't forget the Valentines Ball for Abacas Drogheda tonight - Hope you all raise a load of loot and (terrible pun warning) - HAVE A BALL! xx

(valentines day? bah humbug...sniff)

Special Families deserve Special Memories too

We had our family photo taken last Sunday for the first time - Ever.

It might surprise you that we have NEVER before attempted a professional family portrait as the nature of our kids disabilities has always put us off even attempting it. 

My family in Australia have to put up with whatever we take on our mobiles and since that means one of us is holding the phone while the other wrangles the kids, we are never all in the same pic'.

But then Derek orourke called and suggested we try having a session at home in the kid's own environment rather than a sterile studio.

He said it would take 20 minutes to set up; then an hour for actual photographs -
On the day we let him set up and gave him 15 minutes, with Boo and Bratty wandering in and out as they pleased. 
It was a relaxing experience, no one got stressed out or tearful. (including me) 
And Bratty even took off her coat!


This is just a sample of what he achieved. We have ordered some prints and are looking forward to our first framed family photograph in years. And I didn't even have to get myself in the papers to do it!

Don't want this to turn into an advertorial - but I did want to inform you that it is possible for special and challenging families to have Happy Memories too.

If you are interested in more of the proofs, check out my personal blog (later!) or click on the link. 

xx



Irish Autism on Facebook


Some of you might have already noticed this little guy as I send out invitations to be my virtual friend on this new fangled thing called Facebook.
If you want to join, click on the link on the little oryx above; and then do a search for irishautismaction.
Facebook has an option to upload photo albums and I want to encourage you all to contribute.
I want our facebook page to be a gallery of all the activities we undertake.
That way our sponsors can log in and see in detail exactly what the funds they raise and give are doing for our kids.
The newly diagnosed can be reassured that the sky is the limit in terms of possibility for the future, and us old timers can be inspired to try something new.
And it can't all be pictures of Boo and Bratty!
Send me your snaps of horse-riding, swimming, hill walking and cycling. The School Sports day, Special Olympics Comp', The School Concert, or The Day it Snowed!!!

Please also send me your group activities - The Day we packed bags in Tesco, or held a benefit gig, or abseiled down a wall in Drogheda or climbed Croagh Patrick - not long to go !

I have a few happy snaps of B & B up there doing their thing, and O2 have sent me some pictures of their volunteers helping The Red Door move to Monkstown (thanks Guys!) - I am looking forward to seeing them labelled.

Join the group (get with the times Homer) or email me on affinityautismireland AT gmail DOT com.

xx

(put in the symbols yourself -avoiding spammers)

Burnt out

It's an expression many of us use after a shitty day, week or month of fighting for services, entitlements or just trying to get your child to wear a coat on a freezing day.







But consider this, in my homestate of Australia - Victoria; over 5000 people are now homeless as a result of a bushfire. At last count 200 people have been confirmed dead. And many many more had to flee for their lives on Saturday as what has been described as a firestorm engulfed their land, their homes and their entire communities. Whole towns were destroyed.



I have phoned home and my family are all safe as they live on the western side of Melbourne and the fires were on the eastern side. But my sisters told me the stories of the horrors, at how fast the fire front moved and how many simply had no chance to escape.



Australians know fire. We have suffered tragic loss of life and terrible loss of property on many occasions, but each time the results are studied, the odds weighed up and the lessons learned and relayed.

On a day like Saturday; after seven 40 degree days in row, the public radio would have been advising people to make their plans to evacuate, or prepare their homes to stay.

Staying means putting on cotton or woollen clothes, (natural fibres don't burn easily) blocking up the gutters, filling them with water and hosing down your roof. It means regularly checking the air for smoke, and the ground for embers, which can travel a long distance and ignite easily in the dry conditions.

The message is very clear, go early or stay and prepare.

The tragedy of Saturday is that so many people had no time to do either.

People were literally watching the fires on television and going outside to check for smoke; then turning around to find their homes alight. Fire travels faster than smoke.

They had no chance. Many of the people killed were in road accidents as they tried to escape in thick smoke. My nephew told me of a woman who opened her car window to try and see the white line on the road, while her husband screamed at her to close it as there were flames coming into the car. They escaped.

Of course many were burned in their homes. We don't know how many yet.

One woman emailed her family to say she was safe and then pressed Send; as her home was engulfed. She didn't survive.

There are stories of hope, of the man who covered himself and his family in a wet cotton blanket and then lay down in their olive grove as the fire passed over head.

Another put the family in the car and waited as his garage ignited before starting the engine and driving through smoke to safe ground.

Statistically speaking, 1 in every 160 of those people had autism.


There are days when we cannot get the our son into the car to go to school. Some days we spend up to half an hour trying to coax him into his clothes and down the stairs. There are weekends when he will not leave the house to do anything - walk, a trip to the shops, a swim at the local pool. Just won't go.

Imagine.
Imagine trying to evacuate him in an emergency.


There are nights when we cannot get our daughter to bed.

We have spent over 2 hours holding her as we walk up and down, (she is 9) putting her back into her bed and trying to coax her to stay there as she tantrums. Some nights I end up with her in the car just to give the rest of the house (and our neighbors) a rest from the screams.

Imagine.
Imagine trying to keep her under a wet cotton blanket on the ground when we are frantic and unable to control our own terror at the roar of the approaching firestorm.

The scale of this tragedy is beyond any one's comprehension; unequalled in our history.

It is also acutely personal. I will update when I know what to do.

Photo credit; The Herald Sun via Imelda

The Snowdown - News Round Up for Autism and Special Needs


In case you've missed it some links to autism news for the week:


Sharon: over at The Voyage celebrates victory over the odious Action For Children U.K advertisement that depicts an autistic child as a little monster.


The ad will air for the last time today after a concerted campaign lead by Sharon and over 2000 members of the Face Book Group "Let's Stop Action For Children Demonising Children With Autism". In the republic you might catch it on UTV - as the cable networks show ads from the North. (Sky etc. sub out the ads)

If you see it, please clink on Sharon''s blog and formally complain to the Advertising Standards Authority in the U.K.

This advertisement was dreamed up by an Agency and we need to communicate that it should not happen again.

My own Boo is 11 and constantly asks questions about T.V. and while they can be sticky, I always endeavor to be factual in my replies.

How would have I explained that the little cartoon monster in these adverts' was actually supposed to represent a boy with Autism - just like him?


The campaign was supported by respected Autism professionals such as Simon Baron Cohen and Tony Attwood and congratulations must go to Sharon for raising the issue and researching her responses so comprehensively. Puts me to shame.

Put Sharon on your daily reading list - if you havent already.


My old mate Downsdad over at Our Jacob has gone and got himself in the papers - well the online papers at The Times Online.

Fellow special parent India Knight has given a shout out to Nick and his blog which tells the story of his son Jacob, born 14 months ago with Downs. It's personal, it's political and it's funny so ticks all the boxes as far as I'm concerned.

(Nick and I have done a little campaigning together in the past in my other life- so yeah, I have a stated bias, but the blog rocks. Read it NOW)


The aforementioned India and Sharon have simultaneously tipped me off to the latest news on the Wakefield Saga - a Sunday Times investigation has found that he "changed and misreported results in his research, creating the appearance of a possible link with autism."


And finally the folks at Abacas Drogheda have put together a blog to promote their annual Valentines Ball. Forget the doom and gloom and log on to learn how you can have a great time and raise funds that support evidence based intervention for children with severe autism.
That oughta keep you going for the day. Enjoy the snow if it's sticking in your part of the world. And Stay Safe.
xx

Euro Disney Part III: The Magical Blue Pass and how to get it


The Blue Pass - not a myth but a way to make Disney a truly enjoyable experience for the whole family. Nobody likes queueing in theme parks, but Our People find it especially difficult as there can seem to be no point "the ride is over there, why can't I just go on it?" and the wait can seem endless; there really is no way to prepare for it.
But in the Magical Kingdom - Our People do not have to wait (much) because Disney offers a special needs pass to families like ours which helps you skip the queues that lesser mortals have to endure. Great for the child with autism, even better for the rest of the family who get to enjoy an advantage of living in a special family for a change.

When you arrive at Disney Parks, first and most important thing is to go to Customer Relations (which is on the left hand side as you walk into the Park and on the right hand side at the Studios).

Once you show your letter from your doctor/special needs school/IAA ID card you will be issued with a special needs pass. This entitles you to go to the exit area or Fast Pass entrance at each ride and you will get priority boarding onto the ride. You might just have to wait a few minutes if there is another person with a disabled pass on the ride.

It makes a huge difference having these passes and they allow the bearer plus three other people to accompany the pass holder. Also for the parades – there are several disabled access viewing areas in both Parks that you can go to. As there are always huge crowds to view the Parades having the pass for this is great. You just show your Pass to the Disney Cast Member and you can view the parade in relative comfort! But they are very good at making sure only people with passes get into these areas.

And lastly; Make sure you visit both Parks.
The Studios have less queues – large cinema shows etc, great Stunt Show, and parade well worth timing yourself to be there for. The Studio parade is on at 1.30pm each day. The Studio Tram Tour is well worth doing and although queues can be long – they move very quickly.

The main Park, of course, is where all the rides that the little kids like. It is also worth taking the train ride around this Park on your first day to get a feel for the size and layout of everything and to plan where you might like to go. Our people like a little planning!
All tips compliments of Fiona Whooley. For a refresher go here and here to read Sorcha's story.
Any questions? email me and I will forward them on.

Some hints for travelling to Eurodisney : Getting there and where to stay and eat.


From Fiona Whooley; Sorcha's Mum.

Travel off season – great deals usually available around March – February (mid-term, Carnaval – week long holiday in France can be busy). Also parts of October (avoid Halloween) and November (mid Nov good) is quieter and cheaper

Travel early in the week - that is; fly in Sunday, park is much quieter Mondays/Tuesdays) – avoid Fri/Sat/Sundays if at all possible.

Book direct yourself – great deals available on Aer Lingus and book hotel direct on www.disneylandparis.com.

Agents try and persuade you its handier and cheaper but have booked it four years over the internet – never had a problem and always worked out cheaper than Agent quote.

Avoid the Big Runaround: -When you fly Aer Lingus into Charles de Gaulle, you could just follow all the Irish gang going outside the terminal to queue for the red Disney bus. You can buy tickets from the driver if you are travelling independently. If you book through travel agent they are included in package.

But please note, the Disney bus travels to all the hotels on the Disney site and can take over an hour to get there (usually a lot more) and this is not good for "our people"

However, there is the very easy option of just changing Terminal and getting the TGV train which only takes five mins to The Parks.

So, you fly into Terminal 1 with Aer Lingus,
After you leave the baggage reclaim area – you need to go out and head right towards the lifts down to the departure level – where the buses for Disney and other airport terminals are located.

As you leave the terminal building there are several buses to various terminals etc. You get the Terminal 2 Bus which stops off at the Terminal 2A, 2B etc and then the TGV station "RER/Thalys/TGV" which is only a 10 minute journey from Terminal 1.

When you get off the bus, get the lift to the ground floor andgo to the Ticket office on the right side of the building as you enter. You can purchase return tickets for the TGV for the price of the Disney bus and all the staff speak english.

Please Note; When you have your train tickets – you will see what section of track to stand on at the platform (its not just enough to be on the right platform).

The train arrives in so quickly and departs after only a few mins so you have to be in the right place. But its clearly marked on both ticket (which carriage ‘voiture’) you are in and signs on the platform will tell you what letter to stand under to match the carriage arriving in.

It may sound complicated but if you can organise one of your party to get the tickets (ie: Dad) while the others wait it will save you a lot of time spent going from hotel to hotel with the official bus. And it can be very hard to explain to excited kids that this is Not Our Stop Yet!

It is possible to fly Ryanair into Paris Beauvais, rent car and drive to Eurodisney, but depends on your patience level and ability of kids.

Where to Stay:
I recommend you book a hotel on site, and I highly reccommend Hotel New York or Newport Bay which are in Disney Village.

This means that you only have to walk through Disney Village into Parks (10 mins max).

Great in the mornings to get in before the queues and great in the evening with tired kids.

For a real treat consider the Disneyland Hotel -literally 5 minutes from the Parks and you have a very quick exit out of the park if it is all getting too much for your child.

Also, the Disney characters are available every morning in the Disney hotel for 3 hours every morning outside the breakfast area, which means you get lots of photo opportunities with your favourite character. (if this is important)

This was something we missed big time in Walt Disney World, Florida where the characters are not freely available in the hotels – only if you booked character meals.

Lots of Disney hotels on site also but a yellow bus ride away from the Parks. Fine if your kids don’t mind the commute and change over every time. Having gone several times now, we always find it much easier to be as close as possible to the Parks, restaurants etc.

Also, hotels outside the Disney site – good value but again commuting times all add up and will eat in to your fun time if you are only there for a few days.


Where to Eat:
There are lots of restaurants available in Disney Village such as Rainforest Café – great for keeping kids entertained and McDonalds is very handy for lunch time and a quick break from the Parks.

Food in the Parks such as the burger bars etc in the themed restaurants around The Pirates of the Carribean rides is not great quality and very expensive.

Café Mickey – is a restaurant worth booking for lunch or dinner if the kids really want to meet the characters and have not managed to do so elsewhere.

The special needs pass doesn’t make any difference in the restaurants but if you have queuing issues and explain most times they are very good about it.

Think Differently Clip from National Autistic Society

Think Differently About Autism, for my story go here


For the rest of the stories told by real people and re-enacted watch this.




With thanks to the National Autistic Society of Britain for persmission to embed the clips.

Euro Disney Part I - a big sister's story


This story first appeared in the Irish Autism Action Newsletter in Spring 2006. I know quite a few of you are considering a trip this year so I thought I would reprint it - with an update on top travel tips tomorrow.



Our trip to Disneyland Paris ...

Last month my brother Murray and I went to Disneyland Paris for a
holiday. He really really enjoyed it. We have been to Disneyland Paris four times now and we are going back again next year because Murray loves it so much.

It is extra special when you go with a special needs child because you get a blue pass for the Park and a green pass for the Studio and you do not have to queue.
Murray loves the scariest rides in Disney - Thunder Mountain and the Aerosmith Rollercoaster.

When we go into the Park we have to go on all the rides in Murray’s order - the Mad Hatter Teacups, Dumbo Flying Elephant, It’s a Small World, Peter Pan’s Flight, Pinocchio, Snow White and the Seven Dwarfs and the Pirates of the Caribbean and over and over again. But it is great fun and Murray is really happy.

The Princess Parade is on at 4pm every day and Murray really loves watching it – we can go to the Disabled Area and you always get to see the parade really well.

We go for dinner in the Rain Forest café every night. Murray loves it there because every few minutes the animals move. Every year we stay in the Hotel New York in the Disney Village and Murray loves staying in the same hotel every year. Murray and I love collecting all the Disney pins every year and you can swap them for different pins with the cast members.

We were there for St Patrick’s Day this year and we saw green fireworks and Mickey and Minnie were in green clothes for the Parade. There was Irish dancing as well in Main Street USA and I got asked to dance with Chip the Squirrel.

When we go the Disneyland Paris it is wonderful because we never get bored, Murray is really happy and Mum and Dad really enjoy the holiday and I do too. It is really great having an autistic brother because you get to do special things like go to Disneyland Paris and you don’t have to queue. It’s the best!

Sorcha Whooley
Age 8
April 2006



Tomorrow - some top tips from Sorcha's mum Fiona including how to get the magical "Blue Card". Fiona has booked Euro Disney every year since 2004!