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Sibling Dance

The unusually hot UK summer has come to an end  on Christos’ last day in the UK – and he has just finished shopping in Oxford Street, London.

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The last week has been full of giggles and pleasant surprises. I am constantly amazed by how he has grown into a beautiful, mature adult with autism. And I am so grateful to our family for creating and sustaining this human who I can call my soulmate.

His basic schedule is simple – wake up, get dressed, eat, talk about when we will eat again, play his game boy, eat, talk about when he will snack, snack, talk about when he will eat again, talk about the schedule for the next day, talk about what we will eat the next day, eat, shower, tea, sleep. Anything out of this routine is discussed and it fits into the rest of the programme once agreed upon.

The fear of transport, restaurants and public spaces is not as big of an issue as it used to be. He will repeat what he wants to eat and drink and then he will patiently wait for the rest to finish. He adapts to change in plans and new environments like a pro. Like I said in my previous post it’s just the rest of us that stress out about all the above.

His maturity and adaptiveness is a credit to my mum, my dad and our grandparents. It is a credit to all our family how they love him, know him and praise him. The autism discourse used to focus only on the person on the spectrum, however it is their support system which moulds them and creates the adults that go off into society. We are seeing more and more studies and representation of parents and siblings of people on the autism spectrum and it would be naive not to include them in our journey to understanding autism.

Thing about soulmates is that we signed up to do this dance together even before we were born. If I had a choice now, 20 years later and knowing all the things I know, I would choose to spend all my lifetimes with him.

If you are into Netflix, Atypical Season 2 airs on Friday 07.09.2018. You can read my take on it here. If you’re in the UK, The A word delves deep into the family unit, together and individually. Each person is portrayed as a person. You can read my review here.

Tomorrow he travels back to Cyprus to resume the sleep, eat, repeat routine on home turf. Wish him a safe journey back and read something new about autism if you get a mo. I’ve gathered some articles below:

Schools ‘exclude autistic pupils through lack of understanding’

Bricks for autism: how LEGO-based therapy can help children

Autism: ‘If only I knew then what I know now’: Special school teacher Siobhan Barnett shares what working with autistic students has taught her about autism

Autism – five signs of autism spectrum disorder to look out for in children

‘Taboo’ autism seen as ‘disease’ in ethnic communities

How incy-wincy spider could show if your child is autistic

‘Autism and Learning Disability’ To Be A Priority in NHS England’s Upcoming 10 Year Plan

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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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Hot Sunday

 

It’s Sunday and Chris is with dad. They are up to the usual ‘Dad Routine‘. Playing with flat beans, cooking curry and going for walks. 

They will prepare his meals together, like i mentioned before there is a special recipe for everything he eats and he loves helping and contributing to the process.

They haven’t seen eachother for a while so Christos decided to overindulge and had two plates of curry.. Which turned out to be a little bit too hot for him. In this video, even though his face is on fire, he still smiles.

 

Happy Sunday!

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Army: Enlisting Autism

If I had to make a list of improbable professions for Autism, at the top of my list would be the Army. However, on the 6th of Jan I read an article about Israel’s Defence Force’s “Visual Intelligence Division”. Unit 9900 soldiers act as eyes on the ground for highly sensitive operations, analysing complex images delivered in real time from military satellites around the world. Isn’t that mental? When I think of army, I still think of open fields, Captains riding horses, swords and general gruesomeness.

So, I researched a bit more and found that between 2004 and 2011 in Israel, the number of Israelis on the autism spectrum increased fivefold, with 1,000 new diagnoses per year, according to a survey released by the country’s Social Affairs Ministry. Obviously, that is due to a lot of things; mostly, the scientific advancements that have occurred within the past 20 years which enable diagnosis to be available more readily and accurately now. I wasn’t surprised to read about the stigma that follows Autism everywhere it is. There have been suspensions from schools, mostly attributed to the fact that there are no official special education guidelines for autistic students which the school should follow. That’s why we need awareness – so that we can create a framework for all over the world, so that children on the spectrum won’t be branded as naughty or get dosed up on medication at school. This doesn’t just happen in Israel, this happens in the UK, this happens in the US – children on the spectrum are not provided with the education they deserve.

Ro’im Rachok, which in Hebrew means “seeing into the future” is a programme that is aimed at teenagers/adults with Autism. They recruit graduates and provide them with training for enlistment in the Israel Defense Forces. The programme has already had two cohorts of autistic Israelis who have successfully served as image analysts. Much like any other high risk job there are a lot of tests to overcome in order to become part of the Ro’im Rachok. It’s not like the army goes in and picks up all the autistic kids and forces them to join. In fact, students have to undergo tests and interviews so as to ensure that they actually have the skills to be able to analyse images. Not everyone on the spectrum is a genius, or can analyse pictures. Only 12 made the cut this year.

Israel’s 12 then were hosted by the Ono Academic College, which teaches satellite-image analysis. This is a three-month course which runs three times a year. During the three months, the unit’s commanders begin to train the recruits on how to read aerial maps, amongst other things. The thing that really impressed me was the support provided to the ‘students’ during the initial process as well as the course. They can opt-out at any point, they have a team of therapists who they meet regularly who are there to help them with adjusting to the new routine and dealing with stress. I mean this could be anything from getting to campus for class and to digesting the importance and responsibility of the work itself. They have constant support which is crucial. It’s one thing to start a programme with autistic recruits and it’s a whole other world knowing how to maintain it and reinforce it with the appropriate support.

The final phase, which is also 3 months, consists of professional training and therapy sessions at an army base in Tel Aviv. Then they, and they alone, decide if they are ready for enlistment. So, from recruitment to the end of the 6 months there is absolutely no obligation to enlist. Some may walk away with enriched social skills, enhanced professional training and benefits from the therapy which will lead to a better life, hopefully, for them and their families. They get to go home with a sense of worth – they get to apply for jobs and say ‘Hey, I trained for the army’. They get to go out into the world and destroy stereotypes. The ones that do enlist also have the choice to opt out after the end of each year. Or they can go on to complete the required term of service; three years for men and two for women. Yes, women with Autism can be recruited, trained and enlisted too – why did you think they couldn’t? Ro’im Rachok has had one female soldier to date (2016).

One of the recruits, who is only 21, described the job as sitting in front of computer screens and scanning high-resolution satellite images for suspicious objects or movements; this is decoding. I also found out that Israel’s battlegrounds are very complex and inhabited by civilians most of the time; which I guess is the case in most conflict zones. This is why the job Unit 9900 does is so important – because it protects civilians. The autistic recruits analyse these satellite images, decode them, comb  through each millimetre of the same location from various angles and warn soldiers on the ground of what lies ahead, inform them if there is dangerous or suspicious activity; they are helping prevent the loss of life of soldiers on the ground and civilians.

When you think of Autism – do you think it is capable of this enormous responsibility? Because they are, and reading and learning is the way for you to realise the potential held by these remarkable individuals. Autism isn’t something negative, it is not a disease; it’s a character trait. Ro’im Rachok is already thinking long-term and for ways in which they can train recruits to apply for roles like quality assurance, programming, and information sorting. This expansion by the Israeli army means that the autistic community in Israel, and the world, will get recognition domestically and globally. On a domestic level they are given the opportunity to work, just like with Microsoft and the BBC. They get to become known for more than just their Autism and be welcomed and integrated into their societies.

When the whole neighbourhood suddenly sees their neighbour, a boy on the autism spectrum, coming home on Friday in uniformand hears that they can also continue in these fields into civilian work—it naturally has an enormous influence” – Efrat Selanikyo, occupational therapist at Ono College.

When the whole world suddenly finds out about people on the spectrum that are put in charge of handling situations which carry such great responsibility and excel at it; when they read about how Autism can advance, develop and surpass all the expectations the global community has of them; when they hear stories about how an autistic decoder helped save the lives of soldiers and civilians on the ground; and when they see a picture of an autistic person in uniform being praised for their bravery and service to their country and the Autism community; that’s when we break society’s rules. That’s when we expand our society into accepting people that are unique.

That’s when we become human.

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Legacy

Christos wore the jumper I bought him for Christmas on New Years  – the one that says ‘Unwrap Me’. He said Happy New Year, he said Merry Christmas, he
gave us lots of Skype kisses and then he sat down at the top of the table, had his dinner and then went upstairs to play with his game boy.

What were his New Year’s resolutions? Well he wants to have a Lemon Iced Tea and Garlic Bake Rolls at the airport when I visit in February. I am not visiting in February – this is just something he does. I have two theories on why he does this: 1) He wants Bake Rolls and Iced Tea, which he only gets when he goes to the airport, and since the last time he had them was August, well, he misses those two things; 2) He misses me – I like to believe that is why he has made up a date for me to visit.

That was his new years resolution. Autism is not this pandemonium-spreading ‘disease’, with the correctly adjusted supervision, thousands of hours of hard work, repetition, routine, and cooperation we get to create humans worthy of being part of a society. Every child on the spectrum is different and 2015 has been a great year in terms of Autism News. From my perspective, there has been so much coverage, initiatives, events specifically for Autism than any other year.

The most recent eye-cathcing news is Hillary Clinton’s plan to support children, youth, and adults living with Autism. For those of you who don’t know, this isn’t the first time Clinton has dabbled in Autism. In fact, as First Lady, raised awareness and funding for autism by supporting the bipartisan Children’s Health Act of 2000, focusing on Autism research. In the Senate, she introduced the bipartisan Expanding the Promise for Individuals with Autism Act, facilitating interventions and support for Americans with Autism. She also,  cosponsored legislation in 2006 which allocated a significant amount of money for autism-related programs; research, education, early detection, and intervention. All publicity is good publicity. Now the media is talking about how other candidates in the race will ‘match’ Clinton’s plan. Hell, if that’s what it takes to get the government to look at Autism initiatives then so be it; i’ll take it – we all will. Any initiative is an initiative, any debate is a debate, any research, any failed programme anything is progress.

2016 is a big year. A colleague and I have relocated to Brussels, it’s a Leap Year, the USA might have it’s first female president, another Bush or (god forbid) Trump, Boy George is on the Voice, Christo is turning 18. My brother is turning 18. He will be considered – by society – to be an adult. But what will this society offer him when he reaches adulthood?

What will you do this year to make sure that your fellow humans, your kids, your neighbours kids, whoever’s kids have a smooth and enjoyable transition from teenager to adult? What are we, what is this generation, giving the next generation?

It all starts with reading, listening, researching about, in this case, Autism. Educate yourselves and those around you, learn about Autism and pass on a legacy that will make future generations better.