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20

It’s May and I get to cry about my little brother turning 20.

31646765_10156283477410030_4157660885218754560_nI was in Cyprus 2 weeks ago and everywhere I went people talked about how good he is, how handsome, how they miss him and how much they love him. You might think that me writing this is what makes the difference but it’s not. It’s all of my family and how they raised him, how they treat him, how they flaunt him and how much they love him. He has become someone people want to know, and want to know more about.

I took over his room while I was visiting. He didn’t barge into his room to wake me up before 8am even though I could hear him being awake from 7am. He didn’t tell me to fold my clothes, or pick up stuff off the floor of his room, even though the rest of the house had to be spotless. When I couldn’t find the honey – he showed me where it was. When I wanted to drink one of his juices he kissed me and gently took the juice away. When I wanted to watch something, he let me even though it was his time to watch cartoons. When I wanted to watch a DVD he set a time for me and him to watch it together, even though he has this thing about not watching DVDs unless the stars align.  He let me bite off bits of his food even though Christos doesn’t share food. He let me pinch his cheeks and chin repeatedly despite his sensory overload.  When we said goodbye at the airport he hugged me for one second longer, because he knew I would ask for it anyway. He knows I’m a guest and he lets me be one. He has allowed me to float in and out of his life for 10 years.

10 years.

I asked mum if she thought he knew I was his sister or whether he thought I was some girl who showed up 10 days a year to annoy him. She said I was crazy.

But I have lived in a different country for half his life. Yes, there are many things I can say to myself to make it sound ok but right now I am just a girl in a foreign land waiting for him to have another birthday – from which I’ll be absent.

So, I write a blog post instead of a card, I ask mum for pictures instead of skyping and 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. And I want, with all of my being, for that to be enough and for him to know that I am his sister.

20 is the theme of May but I don’t know why and I don’t know how I’m gonna pull it off. Let’s figure it out together.

In other, less gloomy, news it was an eventful Autism Awareness Month this year. Here are some interesting reads in case you missed them:

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Bru-mance

On 4th January 2016 I relocated to Brussels on a 3 month secondment. In those 3 months I made lifelong friends, we had lols for days, hangovers, a detox diet, so much pizza, I gained 10 kilos, launched an autism awareness project, took LPC exams and witnessed a terrorist attack.

I fell in love with Brussels because it’s such a weird place. You can find anything you want but it is organised chaos. You only have to walk around for 20 minutes and you are bound to go through european, residential, touristy, historic parts of the city. It’s a small town playing dress up as a big city.

On 22nd March 2016 I went to work super early because there was a lot going on. It wasn’t until 9am that I sat down, switched on my PC and looked at my phone which kept getting messaged and missed calls that a colleague said to me – there’s been an explosion at the airport. We knew a group of people from our institution that were travelling that day so we immediately began trying to contact them. It wasn’t until the second explosion hit the news that I stopped and thought that this was something I should worry about. We had colleagues stuck on trains and being diverted, colleagues trying to come back and others trying to leave because they had to get to their children. Our building was in lock down and we had to do inventory to figure out if we would be okay to stay the night. When we were finally allowed to leave, we walked through the city to our neighbourhood, it was such a sunny day. Three days of mourning followed.

I wasn’t scared that day. I couldn’t be scared because we were burdened with so much responsibility. In the weeks that followed, we retold the day’s events so many times and I always remember not being scared. I credit this to that one colleague who was my rock that day, and who stayed late with me when I offered to walk people home. I was scared that afternoon when I had to go buy enough supplies to get me through the next few days. I was scared when I locked the door to my flat and I was alone. For the next few days, every time I heard a police siren I checked the news. Two days after the attack a friend called to say there’s a march and we should go.

The Bourse was overflowing with people, flowers, candles, song, laughter and life.

I love Brussels because there’s surprise at every corner; you never know if the car will stop at the zebra crossing, or what kind of amazing cuisine you’ll uncover during a stroll.   love Brussels because their landmark is a small bronze sculpture of a naked boy urinating.

I love Brussels because it was were I started my autism awareness project for Christos’ 18 birthday (#Project324). It was from there that I asked the team if they wanted to be part of the project, it was there that the cards were printed, cut and mailed to 18 countries. I am so proud that my brother’s 18th birthday project is associated with the city of Brussels.

In a short 3 months, I loved, I lived, I drank, I ate, I campaigned, I advocated, I worked, I helped, I was scared, I was angry, I lolled, I studied, I cried, I learned, I got a pink elephant hat. Most importantly, I was inspired. On this day, two years ago 32 people died, hundreds were injured and millions were inspired. Millions around the world were inspired by the fearlessness of humans.

#jesuisbruxelles

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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.

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Autism in 2015

2015 has been an interesting year for Autism and a lot of spectrum stories had their spotlight moment.

  1. Julia, the ‘Sesame Street’ first-ever muppet with Autism
  2. img_0198NeuroTribes: The Legacy of Autism and the Future of Neurodiversity‘ is an Autism book nominated for the Samuel Johnson Prize. Steve Silberman’s NeuroTribes documents the funny history of autism, the neurodiversity of the autistic population, and dismissed the notion of af an “autism epidemic.” It debuted on the New York Times bestseller list and has been picked as a top Human Right’s book.
  3. Largest study ever conducted to prove that there is no MMR-Autism link in large study of vaccinated versus unvaccinated kids. In April, the Journal of the American Medical Association (JAMA) published the study which compared autism rates among vaccinated versus unvaccinated children. The investigation followed more than 95,000 children and confirmed again that there is no link between autism and the measles-mumps-rubella vaccine.
  4. The word “neurodiversity” was added to dictionary.com. It is defined as “the variation and differences in neurological structure and function that exist among human beings, especially when viewed as being normal and natural rather than pathological.”
  5. High-profile Initiatives:
    1. Microsoft announced a new pilot program with Specialisterne, focused on hiring people with autism for full-time, Microsoft positions.
    2. The BBC launched ‘Employ Me’ which will enable people with neurological conditions to find employment – from autism and Tourette’s to ADHD and Down’s Syndrome.
    3. Spectrum Singles is a dating site for people on the Autism spectrum, created by people on the Autism spectrum. Unlike other dating sites, it brings together all people on the spectrum for dating or friendships, but it is also unique in that it is able to acknowledge and integrate a person according to their position on the spectrum. The Spectrum Compatibility Test™ narrows down the prospects to match individual spectrum characteristics with a select group of spectrum compatible matches.
  6. Oliver Sacks, the neurologist and author of many books which explored human neurology, succumbed to cancer and Iain Croft, the founder of Autism World Magazine, passed this December.
  7. RiverTown Crossings Mall Santa caused a sensation online in the run up to Christmas because he sat down and listened to a little boy who decided to tell Santa that he is not a naughty boy, he has Autism. And that Santa told him that it’s okay – it’s okay to be who you are.
  8. Girls with Autism‘ debuted on ITV and it was breathtaking. The first ever documentary about Britain’s only state-run school for girls with autism and offered a unique insight into what it means to be autistic and a teenage girl.
  9. James Williams, or Jim the Trim  barber in Briton Ferry Wales, posted photos showing himself lying on the ground next to Mason, a boy with Autism, giving him a haircut.He did this because Mason is wary of getting his hair cut. Which we can definitely relate to with Christo. Up until a couple of years ago my parents did it at home. A couple of years before that we, all three of us, had to physically hold him down so as to get through a hair cut. It’s a beautiful story, not because it is unique, this happens in a large number of Autism homes. It’s a beautiful story because it is a reflection of what humanity can become.
  10. Ten will be that Christos now eats salmon, and chicken, and peas, he shaves his stubble on his own and he is really good at darts. He knows the word ‘mermaid’ in Greek and he is still only 17. Ten is that people that didn’t grow up around him, didn’t go to school with him know about him, know his name, find comfort in his stories and send him wishes, love and strength. It is about the 100,000 people he has reached this year and the opinions he has changed.

Ten is Christos.

Happy New Year World

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Christmas Wishlist

I’ve heard three Christmas stories this week.

  1. The recurring one was actually the same story I hear every year. The story you probably hear every year at this time – the one about presents. The one where you start complaining about how expensive Christmas is, or how busy the shops are, or how tired you are because you’ve had too many Christmas parties already.
  2. The second one was about Sean Stewart. Sean is 10 years old and lives in Louisiana . His wish this Christmas is to receive 1,000 Christmas cards. You see, Sean’s favourite thing in the world is getting mail. Last year, his mum launched a card campaign through which he received 450 cards. She said “He’s definitely a person who shows that, despite the odds, he’s willing to and he’s tried so hard to break this idea of what people speculate, or what people think about with people with special needs. He is definitely breaking the mold”. Ah, Sean is on the spectrum. Sean’s mom says in addition to helping with his communication, the Christmas card campaign has helped her son develop new interests in things, like collecting stamps and stickers and learning about geography. You can send Sean cards at: Sean Stewart, P.O. Box 359, Natchitoches, LA 71458.
  3. The last one was about a mall Santa. It read “My child is amazing! He has his quirks and drives me bonkers, but he is amazing! The other day he went to see Santa w the cousins. He said his peace to the old man in red and walked away. While aunt Brittany waited for pictures to print, he went back to Santa bc he wanted to tell him that he has Autism. He was flapping his hands, all excited to let Santa know that he has autism. Santa sat him next to him and took L’s hands in his and started rubbing them, calming them down. Santa asked L if it bothered him, having Autism? L said yes, sometimes. Then Santa told him it shouldn’t. It shouldn’t bother him to be who he is. L told Santa that sometimes he gets in trouble at school and it’s hard for people to understand that he has autism, and that he’s not a naughty boy. Santa told L to not worry and that he has been a very good boy being who he is. They sat, and chatted for at least 5 mins. Santa payed close attention and listened to him. This just melts this momma’s heart! My child is a great advocate for himself. But this day was different. He opened up to this person about who he was and he was accepted. He wasn’t a science experiment, like he gets treated when most people find out he autistic. He was Landon, sitting with Santa and being told that it was ok to be himself. Mommy tells him all the time that he’s special and I love him the way he was made, but it’s always nice to hear it from others. To be told that it’s ok to be who he is.
    We have met a lot of amazing people in our Autism journey, but this one made the top of the list.
    Shout out to the Santa at the RiverTown Crossings Mall. You.are.AMAZING.

This Christmas, amongst the THOUSANDS of presents you buy, you can maybe send a card to Sean, or sit with a person on the spectrum or one of their family members and just listen. It is impossible to explain to people whose Christmas budget may easily count up to thousands that an autism family’s Christmas list looks like this:

  • Make sure my child is comfortable.

Only when it comes to food does Christos ever ask us to buy him something. He used to maybe ask for anything that had Toy Story or Super Mario on it, and because it’s such a rare occurrence we would rush to buy it for him. When we were in Disneyland, this year, he would point at stuff, I’d run over and pick it up to buy and he would grab my hand and ask me to return it. He didn’t want it, he didn’t need it; he just wanted me to look at that toy from Toy Story, he wanted to tell me who the character was, he wanted me to be as excited to see it as he was. It’s difficult buying Christos presents because he literally doesn’t need anything and he never asks for anything either. I used to buy him packs of DVD’s, which he would hide for years, or games for this Game Boy which he probably hasn’t played since I bought them because he only plays one game per year approx. So, now I buy him clothes because I know he’ll wear those (sometimes). This year i got him a jumper that says ‘Unwrap me’ which I think the family will giggle at – and Christos will enjoy smile that comes with the jokes he won’t understand.

Christos doesn’t write Santa lists, he doesn’t get a new phone, or the latest game; he doesn’t want it. All he wants is the meal. The one where all of our insanely loud family sits around a table and eats until there is nowhere  else to put food except Tupperware to take home for the next couple of days. The one where my grandpa will say ‘Christo Cheers’ to him a million times and Christo will clink his glass a million and one times, because its Christmas and he knows that’s what we do on Christmas. He loves having people over – because of the food, but also because he loves having our family around. He loves the people he spends Christmas with and isn’t that what Christmas is all about? Loving your people. He waits for my mum to decorate the massive Christmas tree, and the rest of the house. She does an amazing job – and that perfectly decorated tree will be our Christmas memory forever. He wants the lights to be on, all flickery and cheerful, he reminds mum when she forgets. I think they still have a date booked on the calendar for when the tree goes up.

He’s learned to adapt to these
exaggerated surroundings for Christmas. Yes, his sensory sensitivity must go over the roof with the colours, the lights, the shouting, the food, the singing, the sheer madness – but he loves it. He waits for it. He has learned that that’s what we do, that’s who we are and he accepts it. He doesn’t want to be alone, or left out, or locked in his room. He wants to be alone with us – that’s his gift to us.

Don’t forget to send Sean a card this year; to tell a family they are doing a good job; to appreciate how lucky you are; to help a struggling parent in a busy shop with a crying kid. Don’t forget to be kind.

Happy Christmas world.