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Hope in April – Until everyone understands

World Autism Awareness Week: 27 March–2 April 2017

World Autism Awareness Day: 2nd April 2017

USA National Autism Awareness Month: April 2017

As I write this, I am listening to Theresa May trying to answer questions about triggering Article 50 earlier on today. And then I look over at Christos playing on his game boy and I think “What can I do?”. I’m home until Sunday, which incidentally is World Autism Awareness Day. This is the day that Autism Speaks launches Light It Up Blue – where thousands of iconic landmarks and buildings join the hundreds of thousands of homes and communities around the world to “light it up blue” in support of people living with autism. Autism-friendly events and educational activities take place all month to increase understanding and acceptance and further support people with autism. Join this initiative here. You can register your business, you can wear a blue t-shirt, a blue accessory, you can use the official hashtag for the event #LightItUpBlue, you can donate, or you can just read one article about autism. Whatever you do, all that matters is that you do something. Autism Awareness Day/Week/Month is all about knowledge, and it’s all up to you.

Every year I post about what you can do and what is being done around you. So here goes:

  1. Display the puzzle: The Autism Awareness Puzzle Ribbon is the most recognized symbol of the autism community in the world. Wear the Autism Awareness Puzzle Ribbon – as a pin on your shirt, a magnet on your car, a badge on your blog, or even your Facebook profile picture. The puzzle pattern reflects the complexity of the autism spectrum. The different colours and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope that through increased awareness of autism, and through early intervention and access to appropriate services/supports, people with autism will lead full lives able to interact with the world on the own terms.
  2. Find out what’s happening near you: Connect with your neighborhood. Many Autism Society local affiliates hold special events in their communities throughout the month of April.
  3. Watch a movie or documentary about autism. Louis Theroux’s documentary “Extreme Love Autism”, Oscar nominated “Life, Animated”, “Autism in Love” on Netflix, “Girls with Autism” on ITV are just a handful of recent depictions of autism.  You can also read about Autism, and it doesn’t have to be a journal, or research. It can be fiction, like “The Curious Incident of the Dog in the Night-Time” by Mark Haddon, “House Rules” by Jodi Picoult or “Memoirs of an Imaginary Friend” by Matthew Dicks.

IMG_73964. Wear blue.

5.  Watch the National Autistic Society’s video about how you can get involved.

6. Fundraise. In your community, your school, your work or within your group of friends. NAS has released free teacher resource pack too. Each pack is level-specific, and contains teacher guidance, lesson and assembly plans, presentations and activities to help you improve understanding of autism at school. For fundraising ideas see what Connor is doing this year. A fundraising pack is also available for you to get for free or get ideas. Join a bucket collection or create your own. From 27 March–2 April, collections will be taking place across the UK at different train/tube stations! Participating stations include: King’s Cross, Waterloo, Euston, Paddington, Victoria, Baker Street, Charing Cross, Liverpool Street, Oxford Circus, Leicester Square, Cardiff Central, Bristol Temple Meads and Nottingham station. Each day will be split into 3 hour shifts and if you’d like to get involved please email Caroline who will tell you which places are still available. If you are not in the UK or there isn’t a bucket collection near you, you can try collecting at your local supermarket, local train or bus station, workplace, local community centre. Top tips and important information for bucket collections can be found here as well as information on sending money. If you are in Cyprus and you want to hold an event like this you can contact our Autism Support Group Famagusta, or me to pay into a local organisation.

7. Join a Night Walk for Autism in London, Manchester or Bristol if you are in the UK or create your own! Watch the 2016 Night Walk video and be inspired!

8. Talk to someone on the spectrum, or their family. Or me.

9. Autism-Europe will be focusing on the theme “Break barriers together for autism – Let’s build an accessible society”. The aim of this campaign is to understand the barriers to inclusion autistic people are up against and how our society can work together to overcome and remove them. The campaign toolkit explains the idea behind the theme and outlines in detail how and when you can support the campaign in whichever way you prefer. The toolkit bring together recommendations on how you too can be part of our mission to make people more aware of these barriers, and to build momentum in pushing for their removal.

10. Tell someone April is Autism Awareness Month.

It really is that simple. Awareness does not need a voice, it needs understanding. Awareness is achieved within oneself before it can be transmitted to others.

 

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Hope in Disney

553829_10150760901390030_1000986510_nI watched the Beauty and the Beast trailer on TV last night and I felt so emotional. People will say its cliche, or call me a princess because I love Disney films. I watched them all, every day, I know all the songs, the punchlines. It’s a world away from home. It’s how Christos and I bonded when we had nothing else in common.

Facebook drowned me in memory pictures this morning and reminded me that 5 years ago was the first time we took Chris to Disneyland Paris. I had been there the year before to scope it out. I was 22, he was 13 and my mum was exhausted. I had very little patience back then so shout out to my mum for being a saint and dealing with an overgrown teenager and an autistic son all on her own.

He was overwhelmed when we walked in. He didn’t know what was coming, what to expect, what to listen to or see first. The crowds were overbearing and we held on to him tight. By day two he was acting like a local. We were getting off the shuttle one morning and he fell. Suddenly in our heads alarm bells are ringing, the National Guard is summoned. You can see from the pictures that he was a big 13-year-old. He fell, but he didn’t cry. He limped because he still wanted to go to the park, however, he kept wanting to sit down. So, we went to the medical centre and we waited to be seen; after about an hour they just said it needs rest, so we sighed with relief, got him a wheelchair and used it as an excuse to give him anything he wanted. Every day at 5pm he wanted to go watch the parade, he identified his favourite rides, which we visited every day, his favourite crisps and the best ice cream. I won’t repeat myself, you can read about our Disneyland Adventures (volume 2 in 2015) in the  Mickeyminniegoofydonaldydaisypluto series of posts.

This month’s hope is also found in Disney.

Growing up with a brother that didn’t respond to his name, want to play with you and who broke things or rolled around on the floor in anger left little room for bonding. Don’t get
me wrong, I was connected to him from the day we found out he existed, but he never seemed to feel the same. Back when VCR’s were a thing, we had 2 drawers, a big cabinet and a small cabinet full of tapes. Mums family are all film fanatics, they love to chill out watching something and we have definitely inherited that habit. We would record them when they were on TV and then label and put away for watching later.

Despite his aversion to playing with me, he always joined me for a movie. I would put it on, and it would get his attention. Maybe it was that we all went silent when it started, maybe it was the music, the funny voices or maybe it was how much we laughed and how the atmosphere changed when a Disney song came on. We watched them religiously, nearly every day. On weekends we would watch Mickey Mouse or Donald Duck on TV and then in the evenings we would watch the Hunchback of Notre Dame, Aladdin, Hercules, Toy story, Lion King, Snow White, Sleeping Beauty etc. He picked it up quite fast and soon he knew the scenes off by heart. But when Frodo, Jafar, or Maleficent, or the Evil Queen were making an appearance he would hide behind the couch;  listening, but not looking.

Soon after, he started choosing what we were going to watch, he started fast forwarding the parts he found scary and he made sure each box had the correct tape in it. Cute right? No. He also needed all the stickers and covers to be perfect, which they were not because we used them every day. He wanted us to cut off the worn out bits, but cut them straight, and cut them right otherwise you needed to cut more and more and more until there was no sticker or cover left. He would also watch the whole movie, and then would rewind it and watch it in reverse. And because our VCR was old, some of the tapes got caught and were destroyed. My tapes. My Disney tapes. My escape. My world, the one without autism, the one where I was in control because I knew every word and I could count on all the happy endings.

I’m not bitter. Well, maybe a little bit.

It didn’t stop when DVD’s came out, he still ripped them to shreds, he scratched the discs, he ruined the plastic covers. I remember once, I had cleaned one of the discs with a cloth about 150 times. He would look at it touch it, and hand it back. So after the 151st time, I broke it in half. I was like “There, now it doesn’t matter if it’s clean”. Petty right? A bad sister right? The thing is I never treated him differently as a little brother because of his autism. I’d still deny that I had made him cry when mum would ask, I’d blame all broken stuff on him. I stole his food, he broke everything i owned. We yelled at eachother until we cried and we slapped eachother around a little bit. I’d put my foot in his face or throw my socks at him, and he would keep me up all night repeating words until we were both exhausted. And while this is how neurotypical siblings would bond, it wasn’t the same for us.

428326_10150752441475030_1462595363_nI remember how much I missed him, how my friends’ little brothers were so close to their sisters and how much they looked up to them. When I couldn’t get him to hang out with me, I would put on a Disney tape and put the volume right up. I’d hear the game boy music stop, the rustle of a blanket and tiny footsteps running up the stairs. And he would sit, ask me to apologise, turn the volume down and watch the movie with me.

I see a lot of Disney headlines that remind me of those lazy afternoons singing about a whole new world, or those Friday nights at our nans repeating the same old Lion King jokes with our granpa.

For example, Disney’s hit new musical Aladdin, playing in the West End, has announced its first dedicated Autism-Friendly performance will take place on Tuesday 29 August 2017. Wicked did this last year and The Lion King is staging its first Autism-Friendly performance Sunday 4 June 2017.

You may have heard that ‘Life, Animated’ was nominated for an Oscar this year. ‘Life, Animated’ follows the Suskind family and its unique way of communicating with their son — through Disney animated films. Inside his head, Owen created his own stories where he and Disney sidekicks battle villains who represent bullying, depression and even autism itself. The director has said that “Life, Animated” is a testament to the strength of family, the imagination of childhood and the power of story; “Owen is living a meaningful life and it’s not up to us to decide what that is. I’ve never met anyone more happy and content and open and honest about the world around him.” You can read more about it here and you can download it on iTunes or watch the trailer here.

Disney films don’t always have to be about the princess.