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Eternal Valentine

Love in an autism home means something different to the rest of the world. It means hassling your little bro for attention when he won’t play with you. It means finishing your homework and then doing his homework and speech therapy with him just so you can spend time together. Watching the same movie/scene over and over just to share experiences with him. It means staying up every night until he falls asleep first repeating his words. It means giving him all your tapes, toys, CDs, phones in the hope that it calms him down. It means running after him. It means making sure he is okay first.  

Love in an autism home is fierce and overwhelming. As a sibling, I learned at the age of 10 that my childhood, teens and adulthood weren’t my own. As the big sister I thought this little boy was going to adore me, follow me around and annoy me for the rest of my life. Instead, he flipped it all on me and made me the follower.

Love in an autism home breaks you apart and builds you back up. It takes control of every little bit of your soul – even the ones you don’t find out about until years later – and it makes every piece of you better. It gives you the highest highs and some lows far lower than I ever knew were possible.

Love in an autism home takes away your identity. Whoever you thought you were is gone and now you’re someone new. Someone capable of things you never thought of – strength, emotional intelligence, thinking beyond the imaginable. It forces you to love yourself.

Love in an autism home inspires fears bigger than anything you can imagine. I am crippled by the fear of something happening to me because what would happen to him? Who would understand him and give him what he needs? Will he have a home and will he be safe? My fears manifest in love for myself; taking care of me and being overprotective of my welbeing. It made me selfish when it comes to health and forced me to be prepared for any eventuality I can imagine.

Love in an autism home takes away your eyesight and gives you perception. It leaves you blind to egos and gives you uninterrupted vision to see beyond the visible. To dream big and look forward to a future that is waiting to be written by the struggle and fight and determination of autism families for autism families.

On this day I reflect on a life so full of love and I am so grateful for my eternal Valentine – my brother. I hope I get to spend all my lifetimes being inspired by you.

Happy Valentines, Galentines, Malentines, Palentines and Friday to all of you ❤

 

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My hopes for you and me

My 20s were full of love, laughter, crying, drama, fights, loses, wins, deal breakers, trips, transitions, degrees, decisions, heartbreaks, booze, dreams and so much more. Sometimes I wonder what your 20 would have been like if you were neurotypical. I wonder if we would still be a family, how close we would be and if I82233631_2531887710466115_4314041005243367424_n would worry about you. Would we hang out? Send cards? Meet on special occasions? Would our lives depend on each others?

Probably no. But for better or for worse, our lives are intertwined. We are close, I worry about you, we hang out, send cards and meet on special occasions. All these banal things take a completely different meaning but that meaning is ours – yours and mine.

To be honest, I am nowhere near where I thought I would be at 30 but I know where I’m going. I know where home is. I can make plans and dream big – I’m doing better. I spent my 20s chasing goals and worrying that I didn’t belong to one place or have a home but I’ve realised that anywhere with people is home – I have so many homes and that’s okay. You taught me that. In the last decade you have moved to 7 different homes, changed 3 schools and you were okay.

In my 30s I have all I need and maybe that was the gold I was so desperate to find – not earning enough to support us both or having a high-stakes powerhouse job but being a powerhouse and strong enough to be okay with not being okay, being irresponsible to learn responsibility, being broken to become resourceful and being miserable to appreciating happiness.

My hopes for you are that you are happy where you are, with the people you are with. I hope that when you look at yourself you love you, and that when you don’t you can lean back into our love for you. I hope you continue living your life knowing that there are people around you who know you and can represent you and keep you safe. In return, I promise to be safe so that you always have a voice. I promise to live the life I have at this home away from you and always come home to you – for all the decades in my life and yours and beyond.

Thank you to everyone who has donated to Autism Support Famagusta over the last few weeks. I am aware of some tech issues but even if you were not able to donate, your intentions mean that you can out there instead and spread what you’ve learned like a kind of autism awareness plague.

To donate: http://www.autismsupportfamagusta.com/donate

Thank you.

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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.

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21 and Atypical: Happy Birthday Steph🍾🍰

Stephanos is 21 years old today!

19358841_10154713771921238_1693404057_oJust like his bestie, he won’t be preoccupied with this day. His birthday will serve as a reminder to his family of how far he has come and how many Steph milestones he has reached. A birthday is too typical to be atypical like our boys. Stephanos won’t get excited about presents, or friends coming over for a party. His phone won’t be beeping with Happy Birthday notifications and he won’t feel the social pressure we feel when we reach a certain age.

Stephanos doesn’t live to please social norms, or to meet society’s expectations 27752278_10155332857716238_3880961810554679579_nof what a 21 year old ‘should’ do. As his mother has so beautifully put it “He may not accomplish University, marriage, or having children like in a “ typical ” world but he has been totally loved and supported by family , friends, schooling and society. I am positive if he could speak he would confirm in a verbal manner how blessed he is on this subject. Autism is part of society nowadays and we all do our “ bit” to accept and embrace because after all we are just human. We have all learned that a “ typical” world isn’t always for everyone. Society has its beautiful exceptions and Stephanos is an example”.

Stephanos lives to break the ‘norms’, exceed expectations, inspire and pave the way to a new and more inclusive world. He was the inspiration for so many actions taken by his family that have shaped and given meaning to my life. He inspired our group, the special unit in Ayia Napa, the summer schools for children with autism in our area and eventually the SMILE project. In a world where everyone wants to be an individual, Stephanos is the most inspiring of them all. Because Stephanos has allowed so many others to be themselves, to be individuals and to be exceptions just by being himself.

Happy birthday Steph. Thank you for inspiring my family, for opening doors for us we never thought possible. Thank you for being my brother’s friend.

Stephanos’ birthday closes my 21 and Atypical series (although I will be referring back to it with updates from the boys). So join me in wishing him a very happy birthday.

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An autism sister watching Atypical Season 2, Episodes 3-10

It took me a while to get through this season because it is so emotionally charged. It’s a bit too relatable for me.

Ultimately, I want you to watch it and see these 6 things.

1: In episode 3, Sam walks out of his class at some point due to sensory overload. The way he walks out reminded me of my brother. The eyes, the mouth twitching, the hand shaking, the urgency in his step. He walks out of that class as if his life depended on it. Sam has autism spectrum disorder. Keir Gilchrist, the actor, does not. Creating a single, accurate portrayal of living with ASD is impossible. Therefore, to create something relatable to as many people as you can you endeavour to make connections through different interpretations of ASD. It is a colossal credit to the people behind Atypical that Keir was able to remind little old me of my autistic brother in that scene. You can hear what he has to say about the show here, at Autfest 2018 hosted by Autism Society of America. In the same breath, we are introduced to an autism group with a range of individuals. These actors are all on the spectrum in real life. Again, they do not represent the entire autism community but they are there, on the screen with their own traits teaching all of us that autism has as many faces as the ‘normal’ cult. We see that they are honest, they have insecurities we can relate to and they care and look out for each other.

2: Doug and Elsa 44333001_353571598538233_179029183383470080_nare encouraged to promote awareness after an incident with Sam. I don’t want to state the obvious but that’s what i’m doing with this blog, that what we are going with the autism support group in Cyprus, that’s what my dad does with hiring people on the spectrum to work with. It’s not me being me when I say that our people are inspiring. As soon as they waltz into our lives they start tearing down walls, they press a reset button and draw a line between who we were and who we are meant to be. They push us out of our box, and pull us into unknown territory. They open our eyes and give us the gift of purpose.

3: Bullying. We experience Sam’s school life without Casey and although it is heartbreaking to see, watch and relate to we are also reminded that people outside our family have our kids back as well. It’s daunting for an autism family to let go and not be in control. It is nearly impossible to trust when it comes to them because of how cruel our society can be to anyone who is not neurotypical. We are reminded that they will have friends and foes wherever they go, and that their friends are capable of loving them and defending them as ferociously as we do. We experience more of the friendship between Zahid and Sam in this season. It is refreshing to see a portrayal of non-family members and how attuned they are to the needs of the person on the spectrum. It demonstrates the impact a neurodiverse person can have on everyone around them. Zahid gives as good as he takes in this friendship and when he feels he’s out of his league he calls in the big guns – Casey.

4: Sam explains that autism is not an accomplishment. It is not something he worked towards or something he has overcome. For neurotypicals it’s easy to think of someone’s progress as ‘overcoming’ their autism but that’s not an accurate observation or conclusion to make. Autism is something he was born with. Autism it’s part of his physical, genetic, cognitive and behavioural development as a person. He can’t overcome it, because he is it. To Sam, autism is like having fingers and toes. Think of it this way: Some people’s toes are long, some toes are longer than others, some are tiny. Some fingers bend to the left or the right, some have big nail  surfaces some barely have any. No two toes or fingers in the world are the same which means that there are 7.6 billion different pairs of toes in the world. Some people can bend make different shapes with their fingers, some can paint with their toes. Some are ambidextrous, some don’t have all ten.  Who’s to say what a persons abilities are based on their fingers and toes?

5: Casey – Which I talk about extensively here.

6: It is painfully obvious how immense and substantial the research was when the concept of Atypical was cooked up.  The crew, the directors, the writers and the actors show us in every single episode that they are trying to understand all the hundreds of layers that exist beneath the surface of an autism family. Every member is their own person. They don’t have the answers, they don’t do everything right because an autism diagnosis doesn’t come with a manual. Their characters are not superficially drawn up scripts that react to autism. Not all their decisions or actions relate to the person with autism. Each member is a complex human being, who struggles with their insecurities, their past, their future, their friendships/relationships, and autism. They are deeply relatable and painfully real.

Bonus tip: It’s so so worth watching.

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Autism Every Day Part 1

Autism Every Day – Autism Speaks This is a 13-minute film on Autism. It caused outrage within the Autistic community. Parents, families, friends roared disapproval. But Autism Speaks has never taken it down.

I’ll try to be as objective as I can be.

1. It’s wrong that the video surrounds only mums. There are fathers that live with autism every day. To assume that they go through anything less than mums do would be heresy. The ‘documentary’ should have included fathers as well. I know from my own family that my dad has dedicated his life to my brother. We have all dedicated our lives to him. We all have a special bond with him and father, just like mothers, are angelic.

2. To the mum with 3 autistic children: You are a superhero.

3. Quitting their jobs to care for their children seems like a pattern. While I believe that is a noble and extraordinary cause, it would be wrong to assume that every parent with an autistic child has to give up their job to care for them effectively. My parents both have full time jobs; he has never wanted for anything, not for tangible things not for intangible. It is possible to do both. That doesn’t apply to everyone; there are cases of autism that require your undivided attention, day and night, 24/7. The women in the video aren’t resentful for leaving their jobs, they just understand that their children are more important than a job. And if they require their constant care, wouldn’t you give everything up for your child? I sympathise completely with their position because no one will ever be good enough to care for your child. No one knows them the way we do, understands their language, their needs, what each noise means. Its terrifying leaving them with a stranger.

4. The siblings of autism are not ‘unsung heroes’. Yes, there is overshadowing, we are forced to grow up much faster than we should; is that a bad thing? Autism makes us strong, it makes us step up and face challenges, it helps us grow into thoughtful, considerate, powerful, motivated individuals. We realise this once we are mature enough, and we gladly stand in line to be the next person to take over and become their caretaker. Autism is our life. Anyone who says they never got annoyed is lying. He used to break my dolls, my dollhouses, he ruined every single cassette i had and drew on my clothes. He broke all my game boys, he kept me up for nights on end. I could never watch what i wanted, or listen to what i wanted. But i adore him. He annoyed me, but without him i wouldn’t be who i am today. I wouldn’t have dreams that scare me so much they keep me up at night. I wouldn’t push myself to be the best i can in everything i do. Because i know that one day everything I have will be his, and i want him to have everything.

5. I don’t agree with not being able to maintain friendships with people who don’t have autistic children. Maybe we are the luckiest family in the world but our family and friends are extraordinary. They accept us. They buy his favourite food when they know we are coming over, they usually already have food ready for him. We are blessed with compassionate people who understand us and are by our side when we need them. But i understand how you exclude yourself from certain situations, and if your friends can’t comprehend what you are going through then you turn to people that do. Your child’s comfort is paramount, and you gladly turn your life upside down to facilitate that.

6. ‘Yes, in another life I’d love to go for a bagel’. But the reality is that going out for food, at the park, for coffee is a luxury for families that  live with autism. Again, we have different responsibilities, we need to be one step ahead all the time. We are in a state of constant alert, because if we are not, they suffer, they get left behind. A parent of autism is always fully aware, they are dedicating all of their spare time to autism; therapies, making up schedules, practicing what they learned that day because that’s what we want.

Running scared:

If I had a penny for very time Chris ran away from us. He is more aware now, but there are still moments of panic. We’ve all been there, there’s nothing you can do to prevent it, it just happens. If they wander off and you call their name, they don’t reply. We can’t call them or text them to see where they are. When they see something, they don’t look at traffic. There’s a moment – when you first feel their hand slip out of yours and their energy kind of rockets them in a direction – when everything moves in slow motion. You are helpless, no matter how loud you scream; all that matters is if you can outrun them before they hurt themselves. It’s that instinct you get to protect them with no regard of your own safety. That moment where your life becomes empty until you find them again. If you say this has never happened to you, you’re lying.

Can’t you just: – I feel I’ve answered this in my previous post.

Teach your children well:

It’s true, even if you’re an educator, you cant apply the same tactics to autistic children. They will not do something they don’t want to do. I cant even count the times I begged Chris to do a puzzle with me and he just wouldn’t do it. Then a couple of months later he would come to me with the puzzle and want me to sit with him and put it together. The solution to this – and i know it sounds harsh – is to ignore it. Once you take the pressure off them, and not yield to their screaming and shouting, just sit there and do the activity by yourself and they will come to you. The times this has worked for us and Chris are unimaginable. Their characters are unyielding; they will do what they want when they want. I used to buy him dvds of films he loved, films he would watch 2-3 times a day and when he got the dvd he wouldn’t even let us take it out of the box. Once I gave up and let go, he would come to me and randomly mention it and we would watch it. I’m not saying don’t push, push as hard as you can as often as you can. But in rare instances, taking the pressure off works too.

Now, the most controversial part of this video comes when one of the mums admits she contemplated driving herself and her autistic daughter off a bridge BECAUSE that was preferable than having her daughter go to a public school, where she would be bullied, abused, lost, and ignored. Let me just put it out there – that was horrific to watch/hear. It was wrong, it was inconsiderate to say that while she was there, every single comment people made about that moment in the video i completely and utterly agree with.

BUT.

We, as part of the autistic society, know how hard it is to live with autism. There are days/nights when you think you cannot do this anymore. Our life is insane. We have all been there and we have all overcome it. It’s like when new mums don’t admit that they get annoyed at their newborn crying all night because its wrong. It’s not wrong, its human. When you reach this emotional threshold – because you do – you need to take a step back. You need to distance yourself. It’s not wrong, it’s not cruel. It’s the best thing to do for you and your child. 10 minutes – an hour, and it all goes away. How many times have you found yourself crying out of frustration? How many times have you felt crippling, overwhelming anger and felt helpless? It’s not wrong to admit it, you have to, it makes you a better person, it makes you a better parent. Even the strongest have their weak moments. Even the strongest need a kit kat.

It is because of the consuming love that we have for our autistic kids that our emotions run so high. In moments of anger my dad and I have yelled at people, teachers, strangers, I threw a basketball in my cousins face, I spat on another one. Shocking no? It’s a instant reaction to protecting your own, it’s over the top but that’s what happens when you live with autism. You’re over the top, all the time. We need to understand that she didn’t say it because she hates her daughter, she said it because the thought of her being left behind in a school that would definitely consume her was unbearable; I know that feeling, your heart breaks over and over again. Like the other two moms said ‘I can never die’ ‘Nothing can even happen to me’ ‘I have to live forever’. She said it because she would rather die than have her daughter be bullied. We need to understand that she meant it that way, not in a ‘I hate my child and want to kill her’ way. My parents have said to me a dozen times how they would die for me, they would die if it meant me living a long, happy healthy life. Again – over the top. But have you never, for a second, thought that you would do the same for your kid?

I remember being also being terrified of the phone ringing and it being Chris’ school. The anger I feel when i think of the possibility of him being bullied is beyond imagination. I would do ANYTHING to keep him safe. Because as a strong, proud parent of autism your love can conquer the world, it can move mountains, your passion has no ending, you are an object immovable despite anything life throws your way, you fear nothing; except your own mortality.

And I know you feel it too.