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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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On the Radar – Spectrum Singles

kids-loveFollowing on from “PS Love?

At the start of April 2015 a mum and daughter made the news. This was because they had just started a unique dating site, created solely for people on the spectrum.
Both mum, Kristen Fitzpatrick, and daughter, Olivia Cantu, are on the spectrum. I mean out of all the useless, creepy dating sites that exist in this world, we needed one that made an actual difference. Instead of relying on shows like “The Undateables”, that matchmake for viewing rather than love, these two women took it upon themselves to create a forum for the spectrum rather than adjusting the spectrum to the society’s forums. The anxiety of dating usually stems from one question, “Do I tell them I am on the Spectrum?”. Do you put it in your profile description? Do you categorise it under hobbies? What do you do with that information? The fear of rejection and the social pressure to fit a lifetime into a single profile, for people to judge you can be unbearable. The problem with the Internet is that you can be anyone. It’s not a space that encourages you to be yourself, its a space that encourages you to pretend to be what you think you should be.

Autisticdating.co.uk says “Autistic people have problems in general when trying to communicate, that is why they need special conditions for dating as well. We completely understand that, having spoken with and gotten expert opinions from many social workers and experts on autism, and we have designed a dating site that will make the entire dating experience much easier on autistic people.

Noble.

Point Number One: ‘Autistic people’ are not all the same – no two people on the spectrum are the same. It will make the dating experience easier on a fraction on people on the Spectrum, not all of them. Furthermore, not only does it generalise it also sheds a negative light on Autism by assuming that all people on the spectrum have communication problems. I tried to sign up for this, it wasn’t exclusive; it didn’t ask me if I was on the spectrum; it didn’t ask anything except it told me the website was over capacity. I wonder how long that has been the case.

A very, very similar site, AutismDating.co.uk says “Anyone who is on the Autism spectrum (or their close family members) all start asking the same question sooner or later; that is the question of love. Will I ever find someone to love who loves me? Will I ever meet that special someone? The answer to that question is a resounding “Yes!” especially if you give Autism Dating Service a try…. We have thousands of open-minded women and men from all over the USA and you could be among them, meeting them, setting up dates and exchanging experiences and details of your life with them, even right now”.

Fair.

Point Number Two: You cannot sign up for this site. Much like its twin, AutsimDating.com targets people with Autism as a whole. The use of the word ‘open-minded’ bugs me a bit too, however once you actually sign up there may well be open minded people to meet. Both these sites were developed by people who are not on the spectrum.

Olivia, 18, got the idea because she was tired of being misunderstood by her “non-autistic friends”, as she calls them. She wanted a place “free of the stigma”, free of the anxiety of being on the spectrum.

Spectrum Singles is a dating site for people enhanced-30499-1427990487-9 (1)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. imagesFor example, one of the options when registering for this site is that it asks whether you are verbal or non-verbal. This innovative test helps bring together, as best it can, people that share certain attributes with whom it would be easier to communicate and build a relationship or friendship. The test is basically 184 questions long and includes questions about social skills, what makes you uncomfortable, sensory sensitivity or deprivation, sexual preference and many other focus points. The algorithm was created by Kristen and Olivia created the questionnaire. How amazing is that? The test gives you a colour which is associated with your answers, likes and dislikes and then you can browse the site and find other members with the same colour.

There is a YouTube channel which is a series of short funny videos on dating, and tips, for people on the spectrum; you can watch it here. Michael McCreary and Olivia Goudreault, are both on the autism spectrum as well. They also have a Facebook group with articles and funny memes for the members; you can browse this here

Spectrum Singles removes the stigma and anxiety of the Spectrum. It’s basically what the world should be – free, no pressure, no stigma, no pity, no fear.

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Seventeen Candles 

IMG_7432Christos got a cake at his school today.

Chocolate for breakfast? YES,  PLEASE (Christos would say ‘se pakano’ – it sort of means ‘please’ in greek).

He feels happy. He knows it’s his day, but doesn’t quite know why. He waits for the song to finish, he blows out candles but only because he knows he’s supposed to and because he gets cake after. He eats cake for breakfast, who would complain? He sees his family, lets them hug him and opens his presents, he doesn’t really know why except for its been happening for the last 17 years, its routine.

But he does know, that on the 6th May 2020 he will be celebrating this day in Disneyland. Happy Birthday Christo my superhero, my extraordinary brother, my cup of tea, my heart.

On this day, think of people you may know that are on the spectrum and see how they are, say hello, even just a smile to someone you think is weird because they are flapping their hands or skipping or too old for the playground. It’s so important to remove the stigma of Autism, it’s so important that more people feel accepted, loved, understood. On this day, that my heart is filled with love for someone with Autism I think of Elspeth McKendrick.

Elspeth, 16, took her own life because she got an Asperger’s diagnosis. Elspeth felt alone, she felt like she had no one to talk to. Elspeth felt that sharing this with friends would stigmatise her. She thought she would be walking around school with a big blue ‘A’ target on her. Elspeth felt judged, overwhelmed and thought the diagnosis would deprive her of all the experiences she would have as a teen. She did not fail to come to terms with a diagnosis of mild autism, society failed her. We failed her. We cannot provide a universal support system for Autism, one of the fastest growing disabilities in the world.

Learn about Autism, please.

On this day, every day, with all my heart I think of Elspeth McKendrick. I think of Maxwell Webb, I think of Josh, Andrew Young, Faruk Ali. I think of of everyone that has felt alone, everyone that has felt like a victim because they felt like they didn’t fit in, i think of all the families out there who struggle every day with every single thing(even things you don’t think about – Socks, Teeth, DVDsRestaurants).

I think of you, my family thinks of you. We know you.

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Seventeen Candles – Not everyones cup of tea

This is my favourite present.
Now, the fear with the t-shirts is that they will not fit, however, the fear with the cup is that it may never be used. In other posts I spoke about when Christos gets too excited he hides things until he is ready to use them.

When I lived at home we always had our tea in the morning before school, a tea when mum came home from work and then a tea before bed. Christos always has tea in the morning, he always has tea in the afternoon and always has tea before bed. Maybe if he accepts to change his cup to this, I can have tea with him. Maybe he’ll think of me like I think of him. Since we cant text, of Facebook, or have a chat on the phone, maybe that will keep his memory of me there. He had his birthday party on Saturday. The family gathered, they ate, they sang, he blew out candles, he opened presents.

Like I said last year, (One Six)

Chris wont 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. When I call him to say happy birthday he won’t say thank you, he’ll kind of mumble and then when i say i love you, he’ll say i love you too and continue what he’s doing.

He was happy, and at the end of the day all that matters is that he is happy. A seventeen year-old boy who grew to touch so many lives, who has overcome so many obstacles. A boy who couldn’t communicate with us, who has gone through all kinds of therapies and who now can empathise, sympathise, love, care, talk, joke.

 

    

 

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Seventeen Candles – Normal

 This is the second present Christos will be getting tomorrow.

It’s black and white because Not everything is Black and White.

Because ‘normal’ is not black and white.

Because you, me we are not black and white.

Because Christos is not black and white.

‘Normal’ cannot and will not be defined – ever. ‘Normal’ changes as often as you change your shirt….That’s ‘normal’ now but in a few years who knows what ‘normal’ will be?

I wrote that July 30th 2013. What has changed?

‘Normal’ is hashtagging, ‘normal’ is that Suarez will bite someone every couple of years, ‘normal’ is that Australia will compete in Eurovision 2015, ‘normal’ is hearing about the growing number of refugees from Syria, ‘normal’ is talking about the number of transgender suicides, ‘normal’ is the risk of Ebola, ‘normal’ is a woman running for President of the United States.

Today he is still sixteen.

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Seventeen candles – “S”uperhero

It’s Chris’ seventeenth birthday in five days.

Seventeen years of struggle, pain, tears, breakthroughs, accomplishments and progress.

“S” is for superhero,

“S” because our kids Struggle.

“S” because they rescue us every day with their love and their Smile.

“S” because they give us Strength.

“S” because they Succeed; there are no small victories.

This series is going to be about Christos’ birthday, the countdown, the presents, the love.

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Mickeyminniegoofydonaldydaisypluto #3

Chris was asking for the sun then last two days and he finally got it on Sunday; thank you Easter bunny!

We went to the Walt Disney Studios today. It confused Chris a bit since he wanted to go to Disneyland again. So we had to set out times of when we were going to do everything, which we had to confirm with him every 5 mins. A change in plan had to be well in advance, otherwise there would be problems.

First, we went to see a stunt show with Lightning McQueen, as Chris loves Cars. He liked it, but it was too cold, and too loud at times.

Next, he had his Roast Chicken chips which he remembered from 3 years ago and his coca cola. They don’t have them in Cyprus apparently so this is his treat when we go to Disneyland. We rushed over to ANIMAGIQUE which he also remembered. He had his ice cream, that I had to wait in line for 30 mins for but the sun was out and he devoured it in 3 minutes. We also went to CINEMAGIQUE which is a film created to show the evolution of cinema since it began. When we went in and sat down Chris kept pointing at the screen and saying “Pinocchio”, so we brushed it off and thought he was just talking about the ride. Instead, he was talking about a scene in the film – he remembered it from 3 years ago. We didn’t even remember what we had for lunch.

Mum and Chris went on a magic carpet ride, that he loved! But the entire time he wanted to go to Mickeyminniegoofydonaldydaisypluto. So the time set for that was 5pm. We went on the ratatouille ride, which was basically a ride where you are the size of a rat and run around a kitchen with a whole bunch of them. Of all the animals in the world, why have a rat pretend to be a chef?! Needless to say, those who know me, it was my worst nightmare come true. But, it was in 3D and not the worst ride we had been on. All three of us were impressed. 

Toyland was a bit of a nightmare – I thought it would be funny to ask him if he wanted to go to one of the more adult rides and he kept telling us he didn’t want to go. We went on a kids rollercoaster and he loved it; he laughed and “woo’ed”. 

When we finally went over to the Disney Park, we went on Pinocchio, Snow White, Peter Pan, It’s a small world and Buzz Lightyear rides again. We caught the end of the parade, had a little fight because the parade was blocking our way so we couldn’t get to Buzz Lightyear and he thought we might try and ditch. By the end of it, we were knackered. He had his spaghetti, fanta, and ice cream and we went home. He was very happy.

The next day we had breakfast, we discussed exact times of travel and I left. We rearranged a trip on the 5th May 2020 and he’s got it in his calendar.