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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 Love

I’ve gone back to fiction books now. I’m reading A change of Heart by Jodi Picoult. You may remember her name through the floods of tears that consumed you if you read My Sister’s Keeper.

This book is about a lot of things, but mostly it’s about love. Overwhelming, unconditional love that makes us do things our brain cannot comprehend and our/or our society’s ethics and morals find inexplicable. It’s really good – read it.

So, this month’s hope write-up finds hope in love. Cliche? Maybe. But February is to many a month of love. It’s also the month that I celebrate my mum’s and my pappous birthday so it’s overflowing with love.

I searched the word ‘love ‘ on the blog so that I could refer to any previous posts I made about the topic. Apparently, I use it in nearly every post. My favourites are: 100 posts

PS Love?

When living with Autism, love is something that you never think your kid will miss; because you love them so unconditionally. But then you’re driving and he sees a girl walking down the street and he waves at her; it’s so unexpected, it’s so out of character. Mum and I laughed so loud when Chris did that one time. However, it reminds you that love – that feeling that we all need, seek, treasure – is in all of us. Whether we can express it or not, we want love in our lives. Everyone who has Autism in their life has thought about how their kid might never have that feeling, might never find someone to love, live with and have a family with. It hurts. It’s a feeling that you wouldn’t wish on anyone.

Back to love

I was on the bus yesterday when a couple sat in front of me and another sat behind me – I was trapped. Almost immediately the couple behind me (Couple 1) started tickling each other and the girl sat in front of me was stroking her boyfriends hair (Couple 2). Let me make the point that I am not a fan of PDA, I am not a fan of eavesdropping, lets just say – I am not a fan of couples. But, one of these two couples moved me so much – they were inspiration.

Anyway, to the point. I read the love story of Ron and Kristen Sandison the weekend. He jokes “My wedding anniversary is December 7th, and due to autism, I came into my new family like a kamikaze—a blazing whirlwind of fire.”

On their 3rd date Ron recalls that he revealed his “quirks” to Kristen: “After work every night, I spend 2 to 3-hours in Bible memory time. This daily routine empowers me to be able to quote over 10,000 Scriptures including 22 complete books of the New Testament, and over 5,000 quotes.”

At the 3 month point, he shared with her a story about how he carried around a stuffed prairie dog named Prairie Pup from kindergarten to sixth grade and that he collected and continues to collect Calico Critters; 3” tall animal figurines dressed with handmade outfits; hundreds of unopened boxes lined up in perfect rows against his bedroom wall at his parents’ house.

On their one year anniversary of their first date Kristen gave him the Calico Critters Meerkat Family.

On their 3 year anniversary, they had on Calico Critters on their wedding cake; the bride and groom were cats and the priest a beaver.

In March 2016, they welcomed a baby girl.

Ron thanks his wife for demonstrating compassion and sensitivity to his sensory issues by not using nail polish in their apartment or playing music with bass. He thanks her for proving everyone who doubted that Ron could be loved wholly and unconditionally by someone one day, wrong.

Ron writes for magazines and does guest lectures on autism. He wrote A Parent’s Guide to Autism: Practical Advice, Biblical Wisdom. Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of American. Sandison has a Master of Divinity from Oral Roberts University and Charisma House. Find out more about him here.

There is love out there for all of us. Refusing love because someone can’t stand the smell of bleach, because they are this, that or the other is judgement embedded in us by made up standards society imposes on us. It’s up to us to stand up to these moral, ethical, political barriers and believe that love trumps hate. For eons gone and for eons to come, one thing has been constant and one thing have we not been or will not be able to live without – love.

Happy Love month love bugs from me and my eternal Valentines:

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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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