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The beach at Christmas

We are in Sri Lanka again this year for Christmas. Christos has not joined us but we spend 90% of the time imagining he was here, talking about what he would be doing (and eating) if he was and missing him so so much. Everywhere we go we are asked about him. The people of Amaya Lake were enamoured by him and are looking forward to seeing him again next year.

You may remember that last year we were alone on Boxing Day and how proud I was/am of my gentle giant. Well, this year my dad and I are in Kandy and Christos is spending Christmas in Cyprus absolutely surrounded and crowded with people who love him. When I spoke to him yesterday he was having his tea, completely dazed with happiness and reminding me that I need to go back on 28th because he’s waiting.

Every year, on this day, I say a humble thank you. On this day, I remember all those who weren’t as lucky as I was; those who were lost, who lost people, always remembering and paying tribute to the victims of the tsunami of 2004. I never take for granted how lucky my family was that day to have escaped without a loss. When I look at the Indian Ocean I am reminded of the fear it caused on 26th December 2004 and it can never seem the same again. I am reminded that that’s how quickly life can change.

This year has been good to us. Next year will be a new adventure. With Christos turning 21, we are exploring new options for his day to day life. I’m hoping to share with you later in the year how we tackle this new milestone. No doubt, it will be with an army of autism families by our side. This year has reminded me to never take anything for granted. One second I’m watching Frazier, next second my mum is telling me how her car is trashed and how narrowly she escaped. That’s how quickly life can change.

This year, on 23rd December, Indonesia was struck by another tsunami. The death toll so far is 429. 16,082 people in tsunami-affected regions were confirmed as displaced. It is expected that more buildings are at risk of collapse or being hit by new waves as the volcano is still active. A concentrated death toll of 106 has been confirmed at Java’s Tanjung Lesung beach resort. A pop band was hosting a party on the beach when they were swept by Saturday’s tsunami. That’s how quickly life can change.

Yesterday, we were at a gala dinner, opening presents, eating too much, drinking even more, enjoying and celebrating. Today, is a reminder to give back. Remember, honour, be generous and, most of all, be kind. Love who you love and let others love you. Appreciate, respect and take nothing for granted. That’s the holiday spirit.

Happy hols my kindred spirits ♥️

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The Sri Lanka Diaries: 13 years later

13 years ago on 26th December 2004 we were just two kids holidaying with our parents in Sri Lanka.

13 years ago, while I was clutching onto Christos and waiting for the second tsunami wave to hit, I thought of all the things I might not be able to do. I wondered if my family knew I loved them. If we would be found. I thought of what I wanted to do, and how I would do it.

13 years later, unavoidable circumstances have led to Christos and I being on holiday in Sri Lanka alone for three days. We aren’t slumming it in the slightest. We are still staying in Amaya Lake, got a suite and all the staff doing their best to provide us will all the support we need.

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It’s not the first time we’ve been alone together. I used to be in charge when our parents were at work for 3-4 hours. But we were at home. I knew who to call; I knew what needed to be done in case of an emergency; our parents worked 15 minutes away and our grandparents lived 30 minutes away. For the last three days we have been a 3 hour drive away from dad and 5,644km away from any kind of family. No back up. And when I say no back up, I mean no back up that can take over from me with Christos. I’m the only one who knows how to make his food, what he says, what he drinks, his schedule, his expressions, his mood, how he likes his clothes, socks, showers. I’m the only one he can depend on for 3 days. I haven’t found a word that describes what it feels like yet.

In 2004 Christos was 6. He had not started speaking yet and we communicated with PECS. We had a bag packed with only his food. There was his gluten free pasta, halloumi, lemons, rice, a burner and his salt and vinegar Lays crisps. Remember, this was 2004, in a village in a third world country in the midst of a civil war. No smartphones, no internet, no roaming, no YouTube, no Lays.

Despite my stomach ache, insomnia and the permanent look of panic on my face, the three days have been a breeze. It may not sound like a long time and you might be thinking that I’m being a martyr. I assure you, I tell myself to (wo)man up constantly. We have been following a schedule for the last 11 days, and we have not deviated from it much, unless necessary. My only job is to make sure we stay on schedule.

And that nothing happens to me.

Or him. But mostly to make sure we are on schedule.

The boy who couldn’t speak or understand why we were rushing him out of the house and disrupting his schedule has been replaced by a giant who follows instructions, communicates clearly with me about what he wants and understands that he needs to behave for me. We even went to a gala dinner together! He has enchanted the staff and the other guests. He is aware that I am alone and that I need to be taken care of as well. I know he knows because I occasionally get a kiss I don’t ask for or he looks back and holds my hand. My baby brother has grown into a beautiful human and that is all I want for Christmas for the rest of my life.

Some of the difficulties we have faced these last three days include:

– Having to check the time constantly to make sure we are on time. He does this on my phone approximately every 5/7 minutes.

– Always taking the same route to the same places. I tried to vary our walks slightly and had to deal with a tantrum because of it. He adapted quickly after a stern talking to and threats to call mum.

– Constant reassurance that we are keeping to schedule. He repeats the schedule to me constantly and I have to confirm it every time, with a smile and a kiss. Even as i write this he is telling me that he will be listening to music at 17.20 at volume 50.

– Brushing teeth. I have to count to 60 so that he brushes his teeth properly.

– Exercise. I’ve only been able to convince him to take a walk with me once in the 3 days we have been here. But at least we did it!

– Stimming and echolalia in a crowded restaurant. His arm flapping and laughter or repetition turns heads but everyone has been very helpful and understanding so far.

– The volume. Of the TV, the laptop, the game boy, his voice. It’s a constant negotiation of numbers and compromise. I am amazed at how willing he is to cooperate.

On this day, 13 years later, I am content that my family knows I adore them. I am assured

img_8423-2 that whatever happens I have people in my life that will always find me. I set goals and I have accomplished most. I’ve done most of what I wanted to do and I have plans for the things I haven’t been able to do yet.

Yesterday was all about self-indulgence, presents and personal happiness. Today is about remembering and honouring the 220,000 who didn’t get the chance to do what they wanted by living out our own lives to the fullest.

No doubt our visit to Sri Lanka has been impactful. Everyone in our vicinity has been touched by autism. Everyone has learned something new. I hope this means that the next autism family to visit Amaya Lake will be in for a treat!

Be kind. Share the love.

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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.