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Am I ‘normal’?

normal
/ˈnɔːm(ə)l/
adjective

conforming to a standard; usual, typical, or expected.

Is brown hair typical? What about blonde, red, gray. Are blue eyes usual? What about hazel, green or black? Are beauty spots standard? What about big lips, small feet, pronunciation. How can we say something is ‘normal’ when there are dozens of different body types, languages, dialects? When we suffer from allergies, have different taste buds, handle spice and heat in varying degrees and are shy, confident, anxious or sad? When we all have different abilities in math, sports, languages and even memory. From hunters to taking over the planet, social constructs have been a powerful tool in our conquests as well as our taming and undoing. Social expectations led to competition, innovation, scientific discoveries, cures and architectural wonders. But social constructs of class and what is ‘normal’ or beautiful have also led to genocide, poverty , abuse, racism and inequality which riddle our history, stain our future and which are all anything but ‘normal’.

In just the last 100 years our world – our ‘normal’ – has changed over and over again. From the fall of the Romanovs to the fall of the Berlin Wall, the Wall Street Crash, nuclear weapons and the war on terror to Gandhi, Mandela, Malala and then Trump and Brexit. From the Great Depression to Twitter, apartheid to landing on the moon, Chernobyl, #metoo, loving whomever you love and to the world’s first genetically edited babies – what even is ‘normal’? How come we keep fighting for these ‘normal’ ideals, preach, exclude, bully and not provide for every human simply because they don’t tick the ‘normal’ box when you – reading this – cannot define what is ‘normal’?

atypical
/eɪˈtɪpɪk(ə)l,aˈtɪpɪk(ə)l/
adjective
not representative of a type, group, or class.
If ‘normal’ cannot be defined – Every single one of us is atypical. Which makes us all typical in being unique, different, special, unusual, unexpected, abnormal.
Let’s talk about all the ways we exclude our fellow humans in every day life – with filling forms, education, fashion, language and expectations. Let’s defy all the social impediments we have put in place to facilitate notions of ‘normal’ and create a new social world which helps every ability and every human.
That’s what we have done with the SMILE project. We saw a gap in a system which meant that the Cypriot government didn’t understand the needs of it’s people and doesn’t provide equal opportunities to the communities it is supposed to support. So, we defied the ‘conventional’, we shouted from the rooftops about our kid’s rights – regardless of autism – and we imagined and created a space for them.
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Celebrate your uniqueness, your neighbour’s quirks, listen to someone’s opinions which are not akin to your own. Learn about hair colours other than your own and embrace all the things that make us typically atypical. Help, allow and encourage everyone around you to be the version of themselves they already are and not the one they think they have to be.
Donating to Autism Support Famagusta supports the local autistic community directly – donate here.
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21 and Atypical: A very Disney birthday

60007825_1102919996568611_2483072549760532480_nChristos celebrated his 21 birthday on Monday 6 May 2019 at the Disneyland Parks in Paris. He was spoiled for 4 days with mum running after him and buying him basically anything he wanted. We were a bit grumpy on one of the days due to headaches but looking around at all the families and all the crying kids I’m convinced that we didn’t stand out. There’s something in the air in Disney that makes every one (adult or not) have at least one tantrum.

Disneyland Paris is very accessible to people with different abilities. You get a special pass delivered to the hotel which means that you can skip queues and get special seats fit for your needs. Their maps have an accessibility guide which describes each ride (how loud, how many steps, how bright etc). Overall, the Disney experience is magical. He smiled a lot, cried a bit, pretended to cry a few times and on his birthday he let the restaurant sing him happy birthday and he blew out his candles.

I often wonder if he knows what a birthday is, if he gets excited. But birthdays are 59918925_406917366526247_477245289778905088_n (1)weird and, really, what is there to ‘know’? So, he waits for the song to finish, he blows out the candles and gets to eat cake after. Christos won’t 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. The greatest gift we gave him on Monday was sticking to the programme we made.

I ask my mum if she thinks he knows I am his sister or whether he thinks I’m some girl who shows up a couple of days a year to annoy him. She said I’m crazy. But I have lived in a different country for 11 years and, yes, I know all the things I can say to myself to make it okay. Yet since Tuesday when he gave me a rushed kiss and flew back to Cyprus, I haven’t been able to stop being sad. When I’m with him I try to get into his routine and I try to do things for him but he doesn’t want me to – he wants mum to put his hat on, or to hold his hand, make his breakfast etc. And, I get it because mum, dad, yiayia and pappou are the people who are there for him every day. 10/10 times he needs something I am not there to help him and he knows it. It empties me – this feeling of wanting but not being there. You may think that living with autism is hard, but let me tell you that being away from it is just as painful.

Just like my mum, my family and friends will tell me I’m crazy and that he loves me. They will point out all the nuances that reaffirm that he knows who I am and for a couple of months, that will be enough for me to be okay. I’ll catch up with my thoughts to remember that he is happy and all the sadness and guilt I feel are completely selfish because I can’t add to his life right now. Maybe, later. I hope.

59746931_803068253409282_2241911501889732608_n18 years ago, when he got diagnosed we wondered if we would be able to handle it, if he would ever speak, if we would ever be able to communicate with him. We worried whether he would be able to do things for himself like tying shoe laces, eating, bathing. When he was five, we never would have imagined sitting down and having a conversation with him about what he wants, why he’s upset, how we can fix it.  We never thought he would handle school as well as he did, or socialise as well as he does. At 21 he still surprises us with his quick math, his photographic memory, his compassion, organisation and humour. That’s the Christos I want tell you about – my resilient, honest, brave, loyal cheeky and atypically typical brother.

So, I write this blog post instead of sending a card, I ask for pictures instead of Skyping and, every year, 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.  I dream of sharing the rest of my life with him, for our happily ever after, and want with all of my being for him to know that I will be there and that I am his sister.

Happy birthday Christos, I love you, thank you and respect you 💙

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21 and Atypical: You can’t spell autism without family

Celebrating parents and family in April – Autism Awareness Month – is a must. As well as being thrown into parenthood for the first time (or again), parents are thrown into the autism spectrum maze as well. They not only navigate parenthood but also autism and any other siblings. They are pushed into a minefield without any instruction and all the while knowing that every decision they make will change the lives of the family unit (and beyond).  They are the first example of strength we witness as siblings and their love, compassion and bravery mould us, push us, make us. I have collated a few of Stephanos’ and Christos’ family pearls of wisdom below:

Chriso (Stephanos mum):

“I can remember back in the days of nursery, just before the Ayia Napa primary school was to open the special unit for autism when I met Christos’ parents. We were introduced to each other and shown around the special unit so as to show us how it was going to be specialised and in the hope that they would be board. After that we kind of bonded and were in close contact for a lot of issues, not just autism, ranging from therapies, to school, to just life. During primary school and Apostolos Varnavas Stephanos has become connected to kids but Christos used to always save a swing seat for him and I think this camaraderie has stayed with them throughout the years. I always got the impression that the boys had full understanding of each other. They respected each others boundaries and would  not react or interrupt each other’s stimming behaviours.”

“When laughs it makes us all laugh with joy. It’s little things like when he finds cheese in the fridge and grabs a slice of bread and makes a mini sandwich, or when the electricity gets cut off and he goes to the electricity box and tries to switch up the MCB, or when his siblings play hide and seek or ball or generally doing things all together that reminds us that ultimately as long as he is happy we all are too. He is so full of love for his family, he sees one of us upset and he will approach and look at the tears or the face because he knows something is off. He will laugh at appropriate times of happiness, or if he sees his sister that is away studying or the others who come and go, he understands faces even though he wont always respond as per the social norms.”

15032849_10154114892521238_68260037536364233_n“Now they are 21. They go out into a society who has not prepared to welcome them. After this point and after our long journey, full of ups, downs , happy and sad we arrive at another hurdle. But, just like our boys we are always fighting, searching and promoting the awareness to all and especially to the parents who have just had a diagnosis and think their world has caved in. We stand by them because we made a decision to stand up and keep going for as long as we can. Crashing out is not an option because what is at risk is our boys. Autism has given us the opportunity to appreciate the smaller things in life which we would overlook in an already busy world.”
Chris (Stephanos sister):
“I am so amazed by his memory.  He remembers choreographies and song lyrics from years ago. So much so that we can dance to “I will survive” and he will remind me of the steps.”
When he sings Hakuna Matata “He hits the exact tone and also makes the background sounds of the music just with his mouth, he is unbelievable and sothumbnail_97F59141-AC3F-4BF6-9715-B348B40D813E talented. I can see that in general he likes music and especially Disney ones but I think it makes him feel more special that he gets to sing his favourite songs with me. Disney was definitely something we both enjoyed as kids so much and I think it was a way that we both could relate since we loved Disney and grew up with it until now. So I would say it’s more like a the first bond that made us become more closer as sister-brother relationship. I was listening to the Disney song ‘You’ll be in my heart’ from Tarzan few days ago and I instantly started being emotional when singing along cause all Disney songs just remind me of Steph and always will.”
“When he was younger he was a perfectionist he wouldn’t let me draw stuff the way I thought it was correct. He would just take his pen and do it his way on top. Sometimes he still does it now, but it was worse before when we were younger. I think Steph  is fine to do anything with me except drawing because he loves it that he wants to draw in his own way and that’s what makes him be so amazing at drawing.”
“It’s fascinating how autism can bring all people from different areas of the world together”.
Christiana (Christos’ mum):
After the diagnosis “…and while we thought we were alone in this battle, we met Chriso and Stephanos and that gave hope in our lives. We had a common cause and both families fought together. I remember the first time i saw Stephanos I was taken aback by his big bright eyes and his smile, and when i saw Chriso I saw an ally. She inspired me and gave me strength and still does to this day.”
884456_1403665136540932_166050827_o“Even though Christos is not social and doesn’t like too much interaction or hugging he is much more patient now than before. Even though isn’t friendly at first with people, with Stephanos it was always different. They never spoke to each other, they never went out or hung out, perhaps not even looked each other in the eyes once but always acknowledged and accepted each others presence. i really dont know how but in some way i am sure they have their own language. they both love music and walt disney characters. they are silent friends, and i am so happy when they are together.”
“Christos’ behaviour has changed and he has developed awareness which he did not have before. Christos is a loving boy, sensitive, and very well organised. He is perfect with directions, rarely being overwhelmed or getting lost. In fact, he helps us not to get lost, especially me when I am driving! He has eyes on the back of his head and you can never get away with anything he doesn’t approve of; like not washing your glass and not putting laundry for even one day. He has been travelling abroad from a very young age and has adapted perfectly to airports, trains, buses, queues etc.”
“Christos is an angel in our lives, he has brought us light, meaning and made us better human beings. We are so blessed to have him and our goal is to keep that smile on his face always because he is a happy child who soon will become a happy adult.”
Ajith (Christos dad):
“Their whole life starts from home; we are their first image of men and women, their example of people, family, lovers, parents, husbands and wives. Parents need to understand that once you become parents you become a role model, your family is you and even though it can be impossible at times to 16910928_10154942225380030_1134673750_omaintain the balance, keep it simple in your heart without looking at it as a duty but a happy and useful lesson in life.I want to conclude by saying that children with special needs, learning disabilities etc are my heart, I want to stress how important it is to make them feel equal, cuddle them and stop trying to adjust them to society’s unreal, outdated expectations.To all the families out there who are on this journey, repeating the first piece of advice I heard before starting this journey “Keep them happy”. It’s a way of life. My thoughts and prayers are with you every day.It is my life’s mission, along with the support surrounding us, to keep my son, and my family, happy to the best of my knowledge and ability.”
“I have learned and will learn so much from my son. Life for him is so simple and happy, in his own world, his own universe that we can only peek in once in a while. His demands are innocent and very genuine. He has his own routine, his own ways and his journey through learning, communicating, and compromising is simply beautiful. It is a blessing to live with him and see him grow.”
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21 and Atypical: Hakuna Matata

It means ‘no worries’ for the rest of your days.

IMG_6995Christos and Stephanos grew up loving Disney, Warner Bros, Dreamworks, Pixar etc – also we love all those films so it was one of the repetitive actions that we didn’t worry about or mind as much. Among their favourites are Anastasia, Hercules, Peter Pan, Robin Hood, Pocahontas, Cars, The Road to El Dorado and dozens of others. Our houses were always full of Mickey, Minnie and all the heroes and heroines they grew up watching and imitating. In this post we’ll talk about the Lion King. Since its debut in 1994 The Lion King, won two Golden Globes, two Academy Awards and that’s not even listing all of them! The musical version won a Tony for Best Musical and numerous awards for Best Costume and Lighting. Later this year, summer 2019, Disney are releasing a remake of the Lion King using virtual cinematography technology. Basically, we’re obsessed with the Lion King.

I was lucky enough to go watch the musical in London a couple of weeks ago. Listening to that opening song I was transported back to our living room where I am desperately trying to get my little brother to notice me and play with me. After the age of 1 Christos started ignoring us and tantrums were just ordinary. As a big sister I was enamoured by him and his smile – the one that was too big for his face – and wanted his attention so badly that I let him destroy all my dolls, all my board games, all my Disney VHSs. One of the only things he would let me do with him was watch animated films, like the Lion King. In fact, we watched it almost every day for years. He would play the whole film and then rewind it and watch it in reverse, or he would fast forward scenes that he was scared of.  It got to the point that we had to limit it to only watching it when we visited our grandparents. My grandad, wanting to be part of his world like all of us, would sit with him and watch it whenever he got a chance. He often tells us stories about Christos being afraid of the hyenas and at a specific scary scene (elephant graveyard/Scar’s song) he would  hide behind the couch and listen carefully until it was safe for him to go and take his seat in front of the TV again. Christos wasn’t much for emotion back then (he’s a big softie now) but our grandad remembers how happy he was each and every time he watched it and how he lived every different scene every time. My love affair with these animated films was reignited when I realised they were a world where I could talk to my brother. Through scenes, colours, songs and music I saw my introverted brother react to sounds, express fear, amusement and sadness. Simba, Timon and Pumba unlocked something in Christos that I thought I could never access. Of course, he doesn’t let us sing along or dance or say the lines but there are rare occasions when he does. Like dancing to “A whole new world” with my mum on his 18th birthday or letting me watch The Emperor’s New Groove even though he would rather Peter Pan. Anyway, there I was watching the Lion King musical, weeping at how beautiful it was and at how grateful I am for that first song, the song that brought my brother back to me.
Stephanos’ sister, Christina, has told me about how they watch the Lion King as a reminiscent of what they used to do as kids. When the ‘Hakuna Matata’ song comes up they literally both jump up out of their seats, just like they used to do, and they start imitating Timon and Pumba; she’s Timon and he’s Pumba! She describes how fascinating it is to see Stephanos so full of excitement and joy and how well he can imitate these characters. It’s a great feeling seeing your brother engage and show off skills that you would otherwise miss. It reminds us that while our boys are capable of imitating and pretending, they are also making the choice to just be themselves. Stephanos loves music. His mum was telling me about his artistic side which has developed over the years and what a big part of his life music has become. You may also remember that music is used as a form of alternative therapy many reasons but also for people with ASD. Stephanos jumps into place as Pumba, the big loveable friend who never gave up on Simba, and he hits the exact notes of Hakuna Matata – the most wonderful phrase. Not only that but he also makes the background sounds of the music just with his mouth. His sister says “he is unbelievable and so talented”. Chryso, Stephanos’ mum, tells me about how he knows all songs, lyrics and scenes. He still watches them and he can become quite obsessive by rewinding and fast forwarding to specific scenes. Sometimes his brothers and sisters act out particular parts of  a film, for example “its a piranha its a piranha!” from Tarzan to Stephanos’ amusement. While for me it took years to break into Christos’ world, Christina remembers the Lion King singing as being just a part of the activities her and Stephanos shared. They danced to “I will Survive” and they drew together – even though when he was younger he was already a perfectionist and wouldn’t let her draw what she wanted but would take his pen and do it his way on top of her drawing.

In both cases the Lion King brought out something in the two boys that we hadn’t seen before. Their singing, acting and dancing abilities or their emotional and more child-like nature. In either case, they grace us with showing us a part of their character that others wouldn’t see because the autism label overshadows it. When you think back to what these animation films meant to you, or your kids do you see a difference? Did you not squeal when Jafar turns into a snake? Did you not bop your head or scream out the words to Hakuna Matata? Did you not feel the pride of Mulan going back home and taking her place in the world? Is autism even factor in on how we all felt watching these characters? In the end, whether we’re under the sea, on the road to El Dorado, or just around the river bend aren’t we all the same?

#21andAtypical

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21 and Atypical: Dancing with the Stars (aka Sisters)

Christina is Stephanos’ older sister and she shared this story with me earlier this week.

53423695_926770284324454_1836469629984178176_nWhen I was around 15 and Steph was 14 we used to listen to this song “I will survive” by  Gloria Gaynor and we used to just dance to it“. Christina is a year older than Stephanos and has loved dancing since forever. So , she decided to make up a choreography to the song and include Stephanos! Her many choreography stunts included lifting her little brother which she finds hilarious now as he is much bigger and taller than her.  They rehearsed it and danced to that song all the while sealing their sibling bond and creating memories that would last forever and would end up being shared on this blog, with you! As they got older and Christina moved to the UK for her studies their dance faded into their childhood. Christina remembers “after approximately 5 years, we were just sitting around with my mom and Steph listening to the radio when the song popped up! I looked over at him and said ‘Steph it’s our song!’ For a moment he looked at me like he was trying to process which song it was but when I stood up and positioned myself he immediately stood up as well and walked to the exact position he had to, to start off our choreography. I was so amazed by his memory. We started dancing to it again and of course half way through I forgot it but he remembered it all.” 

483721_10151540249360030_589832536_nFunnily enough, when I went home recently we were watching old home movies and going through old pictures and found videos of me and Christos dancing in our flat in our pyjamas. We would listen to same song repeatedly, switching off all the lights and run around with flashlights.

Growing up with a younger sibling with autism we couldn’t help but wonder if we can handle it, if they would ever speak, if we would ever be able to communicate with them. At first we were afraid, we were petrified and kept thinking we could never live with this diagnosis by our side. But, we survived. We look back at those years now thinking how we spent oh-so many nights just feeling sorry for ourselves, crying because we thought we’d crumble. Yet, we survived. We more than survived. We were pushed, inspired, lifted and moulded by them. We are us because of them.

As sisters we were tied to this dance even before we were born. But, and I’m sure Christina will agree, if we had a choice, 20ish years later and knowing all the things we know now, we would always choose to spend all our lifetimes dancing with Christos and Stephanos.

Read about more amazing sisters I have met through this blog here.

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21 and Atypical: Christos

There are 180 posts about Christos on this blog so I will spare you the repeat and link you to the one that describes how I see him best. I wrote this on his 18th birthday and contributed it to Ambitious about Autism’s International Day of Families campaign.

Click to read: To Christos, on your 18th birthday: https://christos90.wordpress.com/2016/05/05/to-christos-on-your-18th-birthday/ 

Christos Profile: 

Born: 06.05.1998

Diagnosed: 2001

Loves: Music and Food

Loathes: People singing and ruining the music, sharing food.

Character: Cheeky monkey

29693288_10156190751555030_361708716_o

My mum does not recall the exact age but she remembers him being very “difficult” on his first birthday. We were recently watching old videos of all the cousins and in one video he is running after the camera, responding to his name and in the next he doesn’t turn around even after 4 -5 times of hearing his name.

Over the next few months/years my parents watched their big eyed, pointy eared little monkey become isolated. They took him in for hearing tests and were told there was nothing wrong. He started walking on his toes and at 2 years old he still hadn’t spoken any words. My parents saw a speech therapist who referred them to the general hospital in Nicosia for further exams on nothing specific. At the age of 3+ he was diagnosed from mild to moderate autism. At the age of 4+ he was diagnosed again in the UK.

The family were distraught. Would he go to school? Would he speak? Would he be able to take care of himself? Would he have friends? Fast forward 16 years and we have a young, gentle man full of promise, love, compassion, who has friends, who takes care of us and has a lot to say. He takes care of the people he loves and makes sure his friend Stephanos always has the swing next to him at break time.

My baby brother is iconic.

#21andatypical

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An autism sister watching Atypical Season 2, Episode 2

I’m only going to talk about Casey (the sister) in this post. I want you to see her the way I see her.  I want you to see through her to all the sisters out there.

42877323_986385234880394_644448336547414016_nThe sister at home – Champion. She is the neurotypical child. She is the one that outed her mum. She is a good student, and a sought after athlete.

She is attuned with her surroundings and the needs of every member of her family. She blames herself when the marriage is put in jeopardy, when Sam finds out and tries to keep normalcy when Sam needs it the most. She takes on responsibilities no one has assigned her with. No one in her family expects her to be all these things, to think of all the implications and consequences. Her thoughts and needs take a back seat because she is the neurotypical, she is the one that has to be there while the parents sort out their own stuff. There’s no time for her emotional distress because she has to step up for every other member in their family. Plus, no one asked how she was dealing with her parent’s problems or in her new school – her champion mask is impenetrable.

The sister at old school – Shield: Everyone knows that you do not mess with Casey and Sam. Sam continues coping at school without Casey because of the foundations she has laid in previous years. It is expected that there will be repercussions when it comes to Sam, and no one wants to take that risk with her. I’m getting ahead of myself but in Episode 3, a fellow pupil accidentally does something to Sam and she says to him “Tell Casey I didn’t mean it”. Her shield mask is impactful.

The sister at new school – Timid. We haven’t seen this side of Casey yet. Mostly because she is so assertive in all her other roles. She is outside her comfort-zone. No one knows her as Sam’s sister here – they know her as an athlete, they will get to know her as Casey. It’s hard for her to readjust and define herself as her own person. She resorts to funny remarks and sarcasm almost every opportunity she gets while she is at the new school. Like I mentioned above, no one in her family has asked how her first few days at school have been – not on screen anyway. That’s not something that just hasn’t been addressed in the script, that’s how it really is in life.

On her first day she had a brought prepared lunch from home, on her second day she has to survive on peanuts and on the third day someone offers her a helping hand (whether it’s a good idea or not is irrelevant). She grabs it because she needs to be taken care of. Do you see how inspired this analogy is? It’s a representation of all the crap she has to deal with in the last few days narrated in food, the thing that sustains us.

Instead of crumbling she picks herself up and watches the penguin cam with her brother. She doesn’t even see herself as being in need of support or comfort. She deals and returns to what’s important. She doesn’t take the compliment from her dad calling her a ‘good kid’ because the things she does, and the support she offers comes is who she is. It’s not fake, it’s not something she has to think of; it’s not for a reward. She has to find her Casey mask.

*End*

As an autism sister, it’s was impossible for me to define myself or to get to know myself when i was growing up. Family break ups and autism drowned out my noise. I never had the chance to sit down and think “Right, this is what I want; this is what I like; this is what I don’t like”. My teenage years were me moulding myself to what I thought my family needed.

I moved away because I thought that’s what I needed to do so I could offer my brother the best future I could. I did law because I thought it would make me financially stable for my brother. I did an MA because I thought that’s what was expected of me. And my relationships and friendships? Well.

In the last two years, I have gotten to know myself . I spend more time with me, I know what films I like – not because my friends like them. I know what music I want to listen to – not because it’s popular. I know what books I like to read – not because they’re bestsellers. I used to drink beer because we were at a pub or eat beef because steak is  ‘the best’. I’d go out every time people had plans without any regard to what I wanted, I’d watch all the blockbusters, listen to all the hits and pretend that I didn’t have a care in the world because no one likes a downer.

Now I know that I don’t want to be a solicitor, I don’t like beef, I can tell people I disagree without the crippling fear that they won’t like me anymore. 12 years down the line, I bagged myself a blind date with me.

It’s hard for any teen to figure out who they are. Add a break up and autism in the mix and things get even worse.

When you look at Casey, or an autism family, look beyond the autism cloak. They are still humans, flawed, broken, tired, brave, and sometimes inspirational humans. When you watch Atypical, read between the scripted lines.

Casey is the single most inspiring female character I have watched in the last few years. I hope you see her through my eyes and that you let her teach you about autism, family and love.

After the trauma of the first episode, i’m ready to binge. I’ll let you know when i come up for air. 😊