0

Hear me roar (about autism): 2013-2014

I am saying goodbye to my 20s this year and will be fundraising for the Smile Project by Autism Support Famagusta. Smile is the first and only day care centre for adults with autism in Famagusta, Cyprus – and it hosts my brother. 

To donate please follow this link and use the hashtag #30smiles

After my graduation I was a bit lost. I didn’t know if I wanted to pursue a career in law, I isolated my self and spent most of my days on the couch or in bed. I had decided not to return home (to Cyprus) all the pursuit of happiness and love. Only, after three years of living away from home I still wasn’t any wiser re the happiness and completely lost about the love bit. One gloomy day, I was re re watching an old series when an episode about writing spoke to me. Coincidentally, I had a little run-in with blog writing at a temp job where I wrote a post about unemployment and the woes of being a law graduate in the state of today’s economy. The process, as well as the response, made me think this was destiny (I believed in destiny when I was 22, just like you did). So, I got out of bed and did some research. Ok I sat up in bed and did some research.

The blog tips I got from various internet sources, sitcoms and friends were “Be yourself”, “Spell check” and “Pick a theme, write about something you’re passionate about” – so what was I passionate about? Looking back now, it was so obvious and I don’t know why it took that long to find the answer. I was still learning about myself and crawling my way out of my own personal dark ages for the previous ten years so I had to dig deep and shed all the layers and masks I had on. One night, I was Skyping home and Christos was being a tiger on camera. After that I spoke to dad about the issues he was having at school. I hung up, cried and realised I’m passionate about him and his future. Destiny (i thought) struck again when I read a guest blog article on BBC about how autistic children are presented with special jargon phrases. Mark Neary captured it completely; it made me laugh out loud and at the same time gave me the courage to create this page and write my first post .

199123_10150167935090030_1697873_n (1)The next two years where a blur. The blog took off in a way that I never expected and so did I. I had so much to say, share, relive, consider, reflect on and learn. Writing all this down made me cry every time. Suddenly, in two years I went from re re watching series in bed and avoiding my feelings to advocating for rights in Canada, Australia, France, the UK and writing articles about us in Greek, writing to MPs and governments around the world. I was approached by autism charities, organisations, radio stations, TV stations about my story (links to articles under Published tab on main page). There was no hiding anymore, no masks.

Writing became a regular thing. It got me out of bed, it made me think, it made me angry, it made me change things and perceptions around me. I had found my voice and the roar I had been suppressing was bursting out of me. My life was filled with people from all around the world who were going through the same thing I was, who wanted guidance, help or advice. People who had just gotten a diagnosis, or who didn’t know which therapy to go for, or parents who worried about how the siblings of the kid with autism would be affected. Writing about autism brought me the happiness I was looking for and it made me look at me in a different way. I knew so much more than I gave myself credit for. I had so much to give and the sadness and anger I felt transformed into inspiration and were channelled into this blog – which made a difference in other peoples’ lives but, perhaps more importantly it mended my ties with my family, and myself. I learned so much about myself through writing about Christos – yet another gift he has given me.

I published 52 posts on the blog in 2013/2014 and, today, this is my 201st post. On the second day of 2020 I won’t set any resolutions because it doesn’t matter what you think you want to do or what is expected of you – what you are is already you. So I am grateful for transformation my brother inspired in the last 21 years, I am thankful for all the friends we have around the world through this blog and I am more inspired than ever to continue advocating for this cause.

I hope you will join me.

81516919_622859898450805_1391874900632797184_n

0

‘Tis the holiday season – no Singing


I am in Cyprus for two weeks. During this holiday I will be posting videos of Christos’ behaviours.It’s unfair to ask for awareness by just writing about it. I want to show you what I mean when I say I cant sing in the car. (Car Routine)

This is every day, this is what it’s really like to live with someone with Autism. This is what Christos is like.

Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

I’ve mentioned before how we are t allowed to sing; ever. You can’t even hum, or whistle, or mouth the words. Mum got a sore throat once from singing so much and so loud when Christos wasn’t in the car. Even when I’m alone I try not to sing, I’m so scared he’s lurking somewhere waiting to make me apologise for singing. At the pool he likes to have music on, so I tried to get all my humming and whistling done when he was underwater. I mean, we don’t sing that good and most of the time I make lyrics up but he doesn’t like us singing because he enjoys the music so much. So he’ll say “Akouo” which means “Listen” only, don’t sing and ask us to apologise. This is what’s happening in this video.

 

 

0

‘Tis the holiday season – Hungry Hippo

I am in Cyprus for two weeks. During this holiday I will be posting videos of Christos’ behaviours.
It’s unfair to ask for awareness by just writing about it. I want to show you what I mean when I say I cant sing in the car; his daily routines; a tantrum; the repetition. If you find it uncomfortable then it’s working, keep watching and keep in mind, this isn’t out of the ordinary. This is every day, this is what it’s really like to live with someone with Autism. This is what Christos is like.Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

In the previous post he was waiting for his favourite dish – spaghetti with tomato sauce and halloumi – here he is devouring pasta with cream and salmon. He enjoys every bite, i think he’s happiest when he is eating – just like his sister.

0

‘Tis the holiday season – Just a boy

I am in Cyprus for two weeks. During this holiday I will be posting videos of Christos’ behaviours.
It’s unfair to ask for awareness by just writing about it. I want to show you what I mean when I say I cant sing in the car; his daily routines; a tantrum; the repetition. If you find it uncomfortable then it’s working, keep watching and keep in mind, this isn’t out of the ordinary. This is every day, this is what it’s really like to live with someone with Autism. This is what Christos is like.Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

Autism isn’t a disability, it is a difference in character.

Christos is just like any other boy – he likes tickling, making jokes and throwing mum off her floatie. Or just enjoying the pool on a hot day, at 16.30; not earlier , not later. 

 He also likes to help in the supermarket. While we are browsing and shopping, Christos will find any item that is out of place and put it back neatly. Here he is helping his nan:

0

‘Tis the season for holiday – #Happy

I am in Cyprus for two weeks. During this holiday I will be posting videos of Christos’ behaviours.
It’s unfair to ask for awareness by just writing about it. I want to show you what I mean when I say I cant sing in the car; his daily routines; a tantrum; the repetition. If you find it uncomfortable then it’s working, keep watching and keep in mind, this isn’t out of the ordinary. This is every day, this is what it’s really like to live with someone with Autism. This is what Christos is like.Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

This is happiness. He is waiting for his favourite dish, spaghetti with tomato sauce and halloumi. He is laughing for no other reason other than that he is happy.

This is Christos’ favourite song is “Take me to Church”. We had to stay in the car until it finished and he was bobbing his head so I thought I’d video us.

0

‘Tis the holiday season – End of a tantrum 

I am in Cyprus for two weeks. During this holiday I will be posting videos of Christos’ behaviours.
It’s unfair to ask for awareness by just writing about it. I want to show you what I mean when I say I cant sing in the car; his daily routines; a tantrum; the repetition. If you find it uncomfortable then it’s working, keep watching and keep in mind, this isn’t out of the ordinary. This is every day, this is what it’s really like to live with
someone with Autism. This is what Christos is like.Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

This tantrum started because Christos didn’t want to brush his teeth. As you know, brushing teeth is big in the Perera household (Attack of the Toothbrush). The tantrum lasted for 10-15 minutes and this is a video of it almost ending. It’s difficult to record an entire one 1. because they go one for quite a while and 2. because there’s so much going on that a camera is the last thing on my mind. 

This is Christos, he is saying “Papa agkalia” which means “Dad hug”, he is also pretending to cry and telling us that he is crying (“Kleo”). 

0

´Tis the holiday season – Dad Routine Video

During this holiday I will be posting videos of Christos’ behaviours. It’s unfair to ask for awareness by just writing about it. I want to show you every day, what it’s really like to live with Autism. This is what Christos is like.

Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

Note that he stands still and smiles when he notices me because he thinks I am taking a picture.

The start of an argument because I blew him a kiss.

Flat bean time (Dad routine

0

‘Tis the holiday season – Nan Routine Video

I am in Cyprus for two weeks. During this holiday I will be posting videos of Christos’ behaviours. It’s unfair to ask for awareness by just writing about it. I want to show you what I mean when I say I cant sing in the car; his daily routines; a tantrum; the repetition. If you find it uncomfortable then it’s working, keep watching and keep in mind, this isn’t out of the ordinary. This is every day, this is what it’s really like to live with someone with Autism. This is what Christos is like.

Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

As I have already mentioned in Making Routine Flexible c) Chris & his Nan routine Christos likes to drink tea and play with whipped cream for hours. It balances his sensory overload. You think that’s weird? Think again. When every inch of your body is aching from the heat, the sounds, it’s soothing to focus on one thing.

   

0

Home

They say home isn’t a place, it’s a feeling; but I think it’s people. 

Home is my person; home is this face.

 

0

“5 things my brothers Autism stole from me” on Autism Daily Newscast

PUBLISHED – “5 things my brothers Autism stole from me”

Writing this article made me a bit nauseous. Even when I write for the blog, I sometimes have no idea what I am saying, I just read it again after a couple of days and pray it makes sense. There’s no brain activity involved, it’s all from the heart, it’s all from Christos.

Here is a glimpse: “He took me out of my comfort zone all the time, every day. We weren’t equals in any sense…I didn’t understand him at all, he challenged me, he defied my expectations relentlessly, he made me work for every word, and his affection. He caused me to shift my perception constantly in order to keep up with him.”

My Box