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21 and Atypical: A very Disney birthday

60007825_1102919996568611_2483072549760532480_nChristos celebrated his 21 birthday on Monday 6 May 2019 at the Disneyland Parks in Paris. He was spoiled for 4 days with mum running after him and buying him basically anything he wanted. We were a bit grumpy on one of the days due to headaches but looking around at all the families and all the crying kids I’m convinced that we didn’t stand out. There’s something in the air in Disney that makes every one (adult or not) have at least one tantrum.

Disneyland Paris is very accessible to people with different abilities. You get a special pass delivered to the hotel which means that you can skip queues and get special seats fit for your needs. Their maps have an accessibility guide which describes each ride (how loud, how many steps, how bright etc). Overall, the Disney experience is magical. He smiled a lot, cried a bit, pretended to cry a few times and on his birthday he let the restaurant sing him happy birthday and he blew out his candles.

I often wonder if he knows what a birthday is, if he gets excited. But birthdays are 59918925_406917366526247_477245289778905088_n (1)weird and, really, what is there to ‘know’? So, he waits for the song to finish, he blows out the candles and gets to eat cake after. Christos won’t get Facebook posts wishing him happy birthday, he won’t get texts, he won’t go out and celebrate with his friends, he won’t ask for money to spend, he won’t ask for expensive presents, he won’t make a big show of opening presents. The greatest gift we gave him on Monday was sticking to the programme we made.

I ask my mum if she thinks he knows I am his sister or whether he thinks I’m some girl who shows up a couple of days a year to annoy him. She said I’m crazy. But I have lived in a different country for 11 years and, yes, I know all the things I can say to myself to make it okay. Yet since Tuesday when he gave me a rushed kiss and flew back to Cyprus, I haven’t been able to stop being sad. When I’m with him I try to get into his routine and I try to do things for him but he doesn’t want me to – he wants mum to put his hat on, or to hold his hand, make his breakfast etc. And, I get it because mum, dad, yiayia and pappou are the people who are there for him every day. 10/10 times he needs something I am not there to help him and he knows it. It empties me – this feeling of wanting but not being there. You may think that living with autism is hard, but let me tell you that being away from it is just as painful.

Just like my mum, my family and friends will tell me I’m crazy and that he loves me. They will point out all the nuances that reaffirm that he knows who I am and for a couple of months, that will be enough for me to be okay. I’ll catch up with my thoughts to remember that he is happy and all the sadness and guilt I feel are completely selfish because I can’t add to his life right now. Maybe, later. I hope.

59746931_803068253409282_2241911501889732608_n18 years ago, when he got diagnosed we wondered if we would be able to handle it, if he would ever speak, if we would ever be able to communicate with him. We worried whether he would be able to do things for himself like tying shoe laces, eating, bathing. When he was five, we never would have imagined sitting down and having a conversation with him about what he wants, why he’s upset, how we can fix it.  We never thought he would handle school as well as he did, or socialise as well as he does. At 21 he still surprises us with his quick math, his photographic memory, his compassion, organisation and humour. That’s the Christos I want tell you about – my resilient, honest, brave, loyal cheeky and atypically typical brother.

So, I write this blog post instead of sending a card, I ask for pictures instead of Skyping and, every year, I try even harder to be better. I think of the years I was there and how I was a part of his smiles, his laughter, his crying, his bedtime rituals, his repetitiveness, his speech therapy, his tantrums, his education, his homework, his first steps, his first words, his transition, his moves, his development.  I dream of sharing the rest of my life with him, for our happily ever after, and want with all of my being for him to know that I will be there and that I am his sister.

Happy birthday Christos, I love you, thank you and respect you 💙

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21 and Atypical: Hakuna Matata

It means ‘no worries’ for the rest of your days.

IMG_6995Christos and Stephanos grew up loving Disney, Warner Bros, Dreamworks, Pixar etc – also we love all those films so it was one of the repetitive actions that we didn’t worry about or mind as much. Among their favourites are Anastasia, Hercules, Peter Pan, Robin Hood, Pocahontas, Cars, The Road to El Dorado and dozens of others. Our houses were always full of Mickey, Minnie and all the heroes and heroines they grew up watching and imitating. In this post we’ll talk about the Lion King. Since its debut in 1994 The Lion King, won two Golden Globes, two Academy Awards and that’s not even listing all of them! The musical version won a Tony for Best Musical and numerous awards for Best Costume and Lighting. Later this year, summer 2019, Disney are releasing a remake of the Lion King using virtual cinematography technology. Basically, we’re obsessed with the Lion King.

I was lucky enough to go watch the musical in London a couple of weeks ago. Listening to that opening song I was transported back to our living room where I am desperately trying to get my little brother to notice me and play with me. After the age of 1 Christos started ignoring us and tantrums were just ordinary. As a big sister I was enamoured by him and his smile – the one that was too big for his face – and wanted his attention so badly that I let him destroy all my dolls, all my board games, all my Disney VHSs. One of the only things he would let me do with him was watch animated films, like the Lion King. In fact, we watched it almost every day for years. He would play the whole film and then rewind it and watch it in reverse, or he would fast forward scenes that he was scared of.  It got to the point that we had to limit it to only watching it when we visited our grandparents. My grandad, wanting to be part of his world like all of us, would sit with him and watch it whenever he got a chance. He often tells us stories about Christos being afraid of the hyenas and at a specific scary scene (elephant graveyard/Scar’s song) he would  hide behind the couch and listen carefully until it was safe for him to go and take his seat in front of the TV again. Christos wasn’t much for emotion back then (he’s a big softie now) but our grandad remembers how happy he was each and every time he watched it and how he lived every different scene every time. My love affair with these animated films was reignited when I realised they were a world where I could talk to my brother. Through scenes, colours, songs and music I saw my introverted brother react to sounds, express fear, amusement and sadness. Simba, Timon and Pumba unlocked something in Christos that I thought I could never access. Of course, he doesn’t let us sing along or dance or say the lines but there are rare occasions when he does. Like dancing to “A whole new world” with my mum on his 18th birthday or letting me watch The Emperor’s New Groove even though he would rather Peter Pan. Anyway, there I was watching the Lion King musical, weeping at how beautiful it was and at how grateful I am for that first song, the song that brought my brother back to me.
Stephanos’ sister, Christina, has told me about how they watch the Lion King as a reminiscent of what they used to do as kids. When the ‘Hakuna Matata’ song comes up they literally both jump up out of their seats, just like they used to do, and they start imitating Timon and Pumba; she’s Timon and he’s Pumba! She describes how fascinating it is to see Stephanos so full of excitement and joy and how well he can imitate these characters. It’s a great feeling seeing your brother engage and show off skills that you would otherwise miss. It reminds us that while our boys are capable of imitating and pretending, they are also making the choice to just be themselves. Stephanos loves music. His mum was telling me about his artistic side which has developed over the years and what a big part of his life music has become. You may also remember that music is used as a form of alternative therapy many reasons but also for people with ASD. Stephanos jumps into place as Pumba, the big loveable friend who never gave up on Simba, and he hits the exact notes of Hakuna Matata – the most wonderful phrase. Not only that but he also makes the background sounds of the music just with his mouth. His sister says “he is unbelievable and so talented”. Chryso, Stephanos’ mum, tells me about how he knows all songs, lyrics and scenes. He still watches them and he can become quite obsessive by rewinding and fast forwarding to specific scenes. Sometimes his brothers and sisters act out particular parts of  a film, for example “its a piranha its a piranha!” from Tarzan to Stephanos’ amusement. While for me it took years to break into Christos’ world, Christina remembers the Lion King singing as being just a part of the activities her and Stephanos shared. They danced to “I will Survive” and they drew together – even though when he was younger he was already a perfectionist and wouldn’t let her draw what she wanted but would take his pen and do it his way on top of her drawing.

In both cases the Lion King brought out something in the two boys that we hadn’t seen before. Their singing, acting and dancing abilities or their emotional and more child-like nature. In either case, they grace us with showing us a part of their character that others wouldn’t see because the autism label overshadows it. When you think back to what these animation films meant to you, or your kids do you see a difference? Did you not squeal when Jafar turns into a snake? Did you not bop your head or scream out the words to Hakuna Matata? Did you not feel the pride of Mulan going back home and taking her place in the world? Is autism even factor in on how we all felt watching these characters? In the end, whether we’re under the sea, on the road to El Dorado, or just around the river bend aren’t we all the same?

#21andAtypical

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Dog Treats, Ice Cube and Rutgers University for Autism

What is Silver Linings?

I go to Silver Linings to watch for any balloons we can reach and move to our world, and here are the ones I have been following in the last couple of months:

  1. Finley’s Barkery in Minnesota “embraces neurodiversity and empowers people to do what they love. 80-90% of adults with Autism and other developmental disabilities are unemployed or underemployed. Finley’s Barkery set out to change that statistic. By utilizing one’s unique strengths, our team takes pride in their roles from handcrafting the treats, to marketing and sales.”
  2. McDonald’s in Indianapolis: Leif, is 7 years old and has autism. His mum explains that “A classmate brought one of the toys to school and Leif saw it and spent the next two weeks hardly talking about anything else with us. He gets really fixated on things and creates stories around toys.” So, like any mum, they went to Mc Donalds and asked for the toy. Unfortunately, the toy had been sold out. *Enter Awareness*TaQualliyia, a 16-year-old employee, overheard that encounter spoke to her manager about the situation. With the manager’s approval, TaQualliyia spent 15 minutes dismantling the display behind the counter as Kandel and her family were eating lunch to get the toys for Leif. Read the story here.
  3. Results of a new study have revealed that brain scans might help predict autism in babies before symptoms appear. “We see an increased rate of growth in the outer surface of the brain, the folds, the sort of waviness of the surface that’s followed by an overgrowth of the brain in the second year,” says senior study author Joseph Piven, M.D., of the University of North Carolina-Chapel Hill. The overgrowth of the brain they observed coincided with autism-related behaviors that start to emerge when the child reaches their second year, the researchers said. Read the story here.
  4. Represent, a social merchandising and marketing platform that enables influencers to create and sell custom apparel, announced their collaboration with Ice Cube in launching a limited edition apparel campaign to benefit Autism Speaks. Ice Cube is very vocal about his autism family. “I’m proud to support the great work that Autism Speaks does, a cause that is so important to me,” said Ice Cube. “My goal through this campaign is to not only help raise awareness but to also support this great organization’s efforts in promoting solutions for the needs of individuals with autism and their families.
    Ice Cube’s design is available on a variety of products for men and women, starting at $24.99, available at Represent.com/IceCube.
  5. In Oklahoma: Children on the spectrum were able to practice their pre-flight skills and how to be an airline passenger through the Wings for Autism program. The free event, which was held Will Rogers World Airport for families, brought children from across the state to participate in the program and had a waiting list. Watch the video here. Wings for Autism will be held in Allentown, PA May 6, 2017, Fresno, CA May 13, 2017, Appleton, WI – May 13, 2017, Denver, CO – May 13, 2017.
  6. Special Books by Special Kids: Founder and teacher, Chris Ulmer, began Special Books by Special Kids (SBSK) to share the unique talents and incredible personalities of the students in his special education classroom.
    Special Books by Special Kids is leading a global acceptance movement that brings awareness to the joys, needs, and struggles of the special needs community and promotes the acceptance and celebration of neurodiverse individuals by all. You can watch a beautiful video of Jon teaching his classmates about planets here.
  7. Legoland Park, Florida: Since 2016, Legoland has been working with Autism Speaks to make its amusement parks more friendly for guests on the autism spectrum. The resort in Winter Haven, Florida, explained some of the features it has added since then including “quiet rooms” and a pass specifically for guests with autism who may have difficulty waiting in line in a press release. Disneyland Paris also offers this.
  8. Speaking of Disney, as always. Disney, in association with Amaze announced an Autism-Friendly Performance of Aladdin – The Musical will be staged in Melbourne. This special performance will be held at Her Majesty’s Theatre on 12th August, 1.30pm. Aladdin was one of our favourite Disney films growing up.
    You can watch the video here.
  9. Stem cells research: This is the story of Gracie. Gracie is 7 years old and was one of 25 children who took part in the first-of-its-kind study at Duke University in Durham, North Carolina. The study’s goal was to assess whether a transfusion of the children’s own umbilical cord blood containing rare stem cells could help treat their autism.
    The results? More than two-thirds of the children showed reported improvements. A larger second trial is underway, one its researchers hope will lead to long-term treatment for children with autism.
  10. Autism Involves Me: Cathy Lomond is the owner of Hotel Port Aux Basques in Port Aux Basques, Nfld. Cathy, working with Autism Involves Me, decided to create a space where those with autism disorder spectrum (ADS) can relax and enjoy their vacation. “The hotel has a lounge with a calming mural, a swing, a climbing wall and a sensory boat to create a comfortable environment for children with autism. There’s also a kids’ menu available with pictures of the food items, which can help foster independence for children who may have trouble speaking.”
  11. 9 million donation to open Britain’s first international autism centre: The money will be donated by Phones 4U billionaire John Caudwell.  The research and therapy centre will be based at Keele University and will cost £18 million. It will specialise in autism. “I have been deeply affected by the families I’ve met whose lives have been devastated by autism, and rebuilt thanks to the support of the charity. I am proud to support what is set to be a landmark development in the provision of services for the millions of people who are affected by autism on a daily basis.”The Caudwell International Children’s Centre (CICC) will include state-of-the-art assessment suites, a sensory garden to help children interact with nature, family training suites, training kitchens for cooking classes to encourage a healthy diet. It looks beautiful and it stand for something you cannot describe, only feel.
  12. Ambitious About Autism: The Ambitious College has opened its doors at Pears Campus at College of Haringey, Enfield and North East London and West London College. Ambitious College was created to give everyone the opportunity to lead a fulfilling, happy and rewarding life; and this includes young people with autism.“Our learners are at the heart of everything we do, their curriculum is highly personalised to help them achieve their goals.” Read more about it here. You know that I have worked with Ambitious on various different projects, therefore this College is very very close to my hear and I cannot wait to watch it succeed and become part of this amazing opportunity provided to the autism community.
  13. Have you stopped reading yet?
  14. Maryborough Correctional Centre: A pilot program in Queensland has had overwhelming success with inmates training special needs assistance dogs. Unexpected? Over 10 months, the prisoners taught the dogs complex tasks including wheelchair work, opening doors, picking up dropped items and turning on lights, all to prepare them for life with a special needs child. Smart Pups CEO, Patricia McAlister, said the pilot program had been very successful as the increasing demand for trained dogs was “huge” and outweighed the number of assistance dogs available.
  15. Rutgers Center for Adult Autism Services (RCAAS), based in Rutgers University, will “..feature a comprehensive program that is designed to support adults ages 21 to 60 with mild to moderate ASD through a wide range of services specifically tailored to meet their individual needs.” Will offer up to 60 adults with autism, and who live off campus, university jobs supported by clinical staff and graduate students. The second phase of the center will offer a pilot residential program for 20 adults with autism who will work on campus and live alongside Rutgers graduate students in an apartment-style residence.

I chose to end with Rutgers because this time last year we got emails from Rutgers University wishing Christo a happy birthday as part of #Project324. Avramis and Florentina were the 2 friends I asked to distribute the cards and so Rutgers because a familiar name during those months. I’ve copied some below because reading them makes me happy and I hope that reading them will prove to you that awareness is everything.

I hope that with all these new initiatives and stories circulating in the media, not a day will go past without you hearing the A word.

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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.

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#Project324 – Exception or Exceptional?

I find it really difficult to explain if awareness means making Autism the exception – which would include special learning methods, special units, training, etc; or if it means accepting that Autism is exceptional – and whether exceptional means rare/uncommon, or inspirational/remarkable.

Exception:

Making Autism the exception would include all the initiatives I have seen come into place these last few years. For example, Microsoft, Apple, BBC, Light it Up Blue, #EmployAutism, First Repondent training, police training, teacher training and the Israeli army which uses autistic volunteers to interpret complex satellite images. These organisations have put in place procedures, other than their usual, to accommodate individuals on the spectrum. Their training is tweaked to provide for sensory overload/deprivation, social abilities and employability. Is this the answer? Will awareness make Autism the exception? And if it does, will that force our global community to become more inclusive?

Will being the exception finally give Autism it’s place in our society?

It feels like a really roundabout and oxymoron-ish (yes, i made that up) way to make equality and inclusivity a reality.

So, a couple of new initiatives that have taken place this week – which make Autism the exception are:

  1. The Asda “Quiet Hour”: The Manchester branch is pioneering a ‘quiet hour’ in aid of autistic shoppers.The Asda Living store in Cheetham Hill is aiming at the people on the spectrum who have sensory sensitivity and will experience a sensory overload when in big crowds, noise, lighting etc. This is what Chris use to go through when he was little, and still does sometimes. The plan is for the store to open one hour earlier in the mornings to allow people who suffer from sensory overload to come in. This hour will lack electronic distractions, such as escalators, music and display TVs, and the public address system will not be used for announcements. Simon Lea, the manager, started thinking and brainstorming with colleagues and customers after he saw one of his customers, a boy with Autism, struggling to cope in the store.“If we can make a few small changes to give these customers a better shopping experience and make them comfortable then I know the store will be a better place to shop for everyone.”The store will open its doors to ‘quiet time’ on Saturday 7 May at 8am, the day after Chris’ birthday. And I KNOW that they aren’t doing this for Chris – but it kind of feels like they are. It kind of feels like we have had an impact, we have been a part of the wave of change which brought on this beautiful idea. That small boy in Asda has inspired an exception which will make a massive difference for the autistic community of Cheetham Hill, Manchester, and hopefully all the UK Asda branches.  Because of that little boy, the store manager asked, learned more about Autism and put together a plan to include people on the spectrum. That’s how awareness works, like an infection, like the plague. The Autism Awareness plague.
  2. Autism Puzzles, a Cardiff-based charity, trained a group of Cardiff Airport staff on how to better respond to the additional challenges faced by those living with autism, related conditions and their families. I mean, if you think bed time is difficult, travelling with Chris was torture when he was younger. Cardiff Airport is now equipped to offer support to the people that fall under the Autism exception. Kind of like wheelchair access, but for Autism; and what a wonderful thing wheelchair access is! I get furious when a building is not wheelchair accessible, now we can start getting mad at buildings that aren’t Autism accessible.

    The airport staff even hosted an open day on the first floor of the main airport terminal to promote Autism Awareness Month and to offer advice to staff and passengers regarding the condition.

    We appreciate that some aspects of the airport experience can be daunting for those living with autism and related conditions, so we are dedicated to continuing our partnership with Autism Puzzles and delivering the highest levels of customer service” Debra Barber, managing director and chief operating officer.

  3. On Thursday 28th April (this Thursday) the House Of Commons will host a three-hour debate about Autism. The debate is a motion on World Autism Week (which ended on 8 April). It cites “a lack of understanding of the needs of autistic people and their families”, and calls on the government to “improve diagnosis waiting time”. You can watch it or read the transcript here – no excuse for not knowing where to look! The debate will call for “a public awareness campaign so that people can make the changes that will help the UK become autism-friendly”.

Exceptional:

Accepting that Autism is exceptional needs further definition. If we view exceptional as meaning uncommon, rare, weird then we fall under the exception bracket of awareness. Accepting Autism as being remarkable/inspiring is the meaning I am going for here.

This sort of awareness requires a very broad kind of thinking, it needs you to bulldoze all your established conceptions of Autism. This kind of awareness comes from inspirational people committing inspirational acts in the name of Autism. The kind of acts that touch your heart instead of your brain. The ones that speak to your soul, your humanity, and draw your body to get out there and help, not the ones that make you brainstorm in order to develop plans and initiatives. The irrational rather than the rational, if you like.

Making Autism exceptional is only achievable through the telling of personal experiences. Only through the eyes and words of people who have been inspired by Autism can inspiration be spread.

  1. Castle Newnham pupils have made 1,000 paper cranes to raise money for a sensory room at their primary school, as part of Autism Awareness Week.Ancient Japanese legend tells of Gods granting a wish to anyone who folds a thousand origami cranes. Does it make sense? No. Does it touch your soul? Yes. Does it make you want to take up origami? Uh maybe. Does it make Autism exceptional? YES.
  2. On Sunday, the BBC ran a story about a father running the marathon for his son, Dylan, and in support of the National Autism Society. Jon Barbuti’s words are very similar to my own and he did this so that “Next time you see a kid have a meltdown you might see it differently, when a random kid grabs your arm to ask you if you know what Minecraft is you might see it just as their way of trying to engage in conversation.” Jon made Autism inspirational.
  3. You may have seen the, now gone viral, video of a boy with autism crying at a Coldplay concert because they are his favourite band. If you haven’t – you have to. Autism can feel, it can love, it can cry and it can laugh – and this video will make you feel all the things.

There are so many inspirational stories I could share with you that make Autism exceptional. The point of this week though is that we can make Autism a topic by making it an exception and by making it exceptional, it’s not a question of either/or – because Autism is both an exception and exceptional. I think the worst outcome would be if we made it either/or. Autism doesn’t need your pity or fear; it needs you to learn and adapt. It wants you to be inspired.

Autism doesn’t need an attitude of exceptions – it needs acceptance of the exceptional.

The struggle for awareness has reached a critical point. The point where we now know we can make a difference and have come a long way but, still have light years to get to where we want to be.

Happy Week 10! Here are some pics 🙂

England:

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Paris:

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Wales:

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#Project324 Week 9

Week 9 begun with France and Switzerland receiving their cards and starting to distribute this week. Christos’ 18th birthday is ONLY 2 weeks away today.

List of Fab Things in Week 8 & 9:

FAB 1: After my fab auntie Eleni gave me the idea, I have spent most of my wage on Disney dresses and masks for his big day. The princesses will include Belle, Snow White, Elsa and Cinderella, Christos will be Woody the Sheriff and the guests can pick and choose from a range of masks – including Mickey, Donald, dwarfs and Princesses. I am hoping that surprising him with his favourite characters will be well received and that he won’t just want us to wear normal clothes. He does this thing when he gets too excited where he hides things for months until he’s ready for it – I’ve mentioned our DVD fights before. We are also expecting lots of birthday cards from Switzerland from people who found #Project324 and wanted to send him an actual card instead of an email – how amazing??

FAB 2: On April 2nd 2015 16,000+ buildings joined Light it Up Blue and raised awareness. This year, on April 2nd, 157 countries lit it up Blue for Autism Awareness. What’s amazing about 2016 LIUB is that it was not limited to landmarks, local businesses, houses, hotels signed up for it and lit it up blue for Autism. That is awareness in practice. Organisations, campaigns, fundraising, and the tireless community that dedicates every moment to raising awareness made the topic so visible that local businesses pledged their buildings for Autism Awareness. You can see the breathtaking pictures here.

FAB 3: Another great thing that has been happening  was the first  AsIAm conference, which took place in Dublin on the 16th April. AsIAm wanted a conference where it could bring people together and promote the idea that every single person with Autism must have the opportunity to meet his/her personal potential.

FAB 4: In Tampa Bay, Florida, small businesses have announced that they will be partnering with the University of South Florida to become more autism-friendly. This will include customer services, AND an internship programme. “All of the students internships are in careers they think they might be interested in when they leave” said Susan Richmond, head of The Learning Academy at the University of South Florida. The Academy provides a custom transition program to prepare adults on the spectrum for employment. Kaleisa Tea Lounge on Fletcher Avenue in Tampa was one of the first to enter the programme. Owner Kim Pham is proud to talk about her new intern: “He is great. Really hard working, really funny, and he fits in really well with everyone on staff. You can’t even tell he’s an intern. Right away he rolls with the punches. When we get really busy he runs around hectic, and really pitches in, working so hard, we appreciate that”. Didn’t use the word Autism, difficult, didn’t have lower expectations – he’s just another intern.

FAB 5: After his birthday, I will be joining Ambitious About Autism and writing for the UN’s 2016 Theme: Families, healthy lives and sustainable future. This is the International Day of Families which is celebrated on the 15th of May every year. The Day was proclaimed by the UN General Assembly in 1993 with resolution A/RES/47/237 and reflects the importance the international community attaches to families. The International Day of Families inspires organisation to promote a series of awareness-raising events, including national family days, workshops and conferences, radio and television programmes, newspaper articles and cultural programmes. So find out whats happening in your area and join in. This isn’t just about Autism, it’s about families.

Pictures from #Project324:

Cyprus sipped on wine to celebrate their final card:

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Ukraine was chillin’ with some coffee:

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Dubai was a bit famished after trekking in 40 degrees leaving cards everywhere:

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and Belgium got creative:

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#Project324 – Week 7

Only 3 more weeks to go. So far, we received 2 emails from people who found cards in New Jersey & 1 from Cyprus; 17 emails from people who have read about the project; 3 articles have been published (Ambitious About Autism, Vantage Magazine, Ant1wo); and I have loads more pictures to share 🙂

Before the pictures though, as this month is known as Autism Awareness & as this project is about Awareness, I thought it would be appropriate to highlight what we want people to be aware of.

  1.  Be aware of what Autism is: Autism is so many things, it’s a spectrum condition which spans from non-responsive to invisible. In the UK the numbers are 1 in 100, in the USA its 1 in 68, and on the whole, 1% of the world population has been diagnosed as being on the spectrum. Awareness means knowing what Autism can be & not categorising it under learning disability and mental health exclusively; or even at all.
  2. Be aware of the healthcare needs: I’ve talked about therapies, endorsed and alternative, diets, pills that we had to go through when Chris was growing up. It’s important to know what Autism needs before we can assess what is lacking from healthcare today. It’s important for community members to know what therapies people with Autism undergo, along with family members, because it will give you a different perspective when you encounter them. If you know a fraction of the abundance of things we have to consider daily, and the money spent on it, maybe next time you see a family in a restaurant struggling to keep someone under control, you won’t judge them, or get angry, or stare; because you’ll be aware of a reality far away from yours.
  3. Be Autism-Friendly: 2015 was a big year for Autism. We have seen a steady increase in initiatives to increase employability options for adults with Autism (Microsoft, BBC, Apple, FR, Army) as well as a number of programmes filling up TV time. If you want to watch any:
    1. Understanding Autism http://www.bbc.co.uk/programmes/p0375ytl
    2. *The A word http://www.bbc.co.uk/programmes/b0759b0c
    3. Girls with Autism https://itvstudios.com/programmes/girls-with-autism
    4. Autism and Me http://www.bbc.co.uk/programmes/articles/4xQRdTyJC1bhNj5kXN4xqs9/autism-and-me
    5. The Autistic Me http://www.bbc.co.uk/iplayer/episode/b00m5jb4/the-autistic-me
    6. *Extreme Love: Autism http://www.bbc.co.uk/iplayer/episode/b01gk4xc/louis-theroux-extreme-love-1-autism

    The exposure has led to Autism-friendly parks, cinema screening, West End and Broadway shows and police training.

  4. Be aware of adults and Autism: Autism doesn’t go away when you grown up, its a friend for life. Because Autism is so ‘new’ there is very little research about Autism in adults and old age. We are wanting awareness for children with autism as well as adults/senior citizens. Taking care of Autism in older generations is critical at this stage because of how little we know about Autism in general. Seeing how it progresses and assessing the needs of the generations that were dubbed ‘weird’ instead of being provided appropriate support (whether educational or personal) is invaluable information.
  5. Be aware of Bullying: In 2015 Autism Together reported that 80% of respondents to their study, over the age of 16, reported being victims of bullying by friends. Abuse can range from verbal to financial, psychological and sexual. Bullying can occur because of a misunderstanding between the bully and the victim, or by the bully taking advantage of the disadvantage the victim is under. Bullying is one of those things that we cannot combat from outside, no matter how hard schools try, or peers try. Ignorance is the cornerstone of bullying and it’s up to you to end it. Learn and teach your kids, family, neighbours, friends, passer-bys. No one deserves to be mocked, thrown in bins, or being made to feel useless.

Pictures from #Project324:

Cyprus:

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Sri Lanka:

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Canada:

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UK:

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USA: 

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And one mid-air travelling from Australia to the UK 🙂

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