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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: Stephanos

young stephStephanos was born on 21.06.1998. His mum remembers his first words being ‘Mama Papa’ before he was even 1 year old. His 5 older siblings showered him with love because he was the baby, the centre of attention. They were all enchanted by that big smile. Just like any other infant he ate a variety of fruit jars, fruit cremes and mashed potatoes and carrots, packed full of flavour and smells.

At 11 months, he stopped reacting to his name. He stopped eating colourful food and stuck to Cerelac, biscuits and Farley’s rusks. He closed himself off, deaf to his family’s calls for affection. They remember it as him regressing instead of progressing. He stopped saying ‘mama papa’. He started stimming – hands in front of eyes, flapping hands, tiptoeing and making sure all his trains and cars were in the right order.

At 2 and a half years old he was diagnosed with ASD.

Stephanos’ family quickly jumped into action. They tried most of the alternative therapies for autism as well as speech therapy, occupational therapy, hyperbaric oxygen chamber therapy, Applied Behavioral Analysis, one to one teaching and of course used PECS. With PECS his family started communicating with him again. With music therapy they got to see that smile again. With speech therapy his speech resurfaced. Little by little, they got an inch of him back at a time.

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With the support of his big, strong family Stephanos was able to express his artistic side. Nowadays, he has an art studio next to his home where he takes daily lessons. He loves painting horses, having started with a basic drawing and slowly adding the horse mane and the tail to eventually win an Erasmus award for one of his paintings. He also has music sessions three times a week and he loves it! In fact, he knows most of the Disney songs off by heart and he loves Grease the film – and I mean, who wouldn’t? His mum describes to us how on school days they have to play Peter Pan, El Dorado and Robin Hood in the morning, have a little dance and roll and only then are they ready to go to school and start the day.

Even through his verbal communication has declined over the years, Stephanos is a major part of the Prodromou familia. He makes them all laugh, he makes them proud with his art, he overwhelms them with pride when he simply picks up a piece of cheese from the fridge and makes himself a mini sandwich. Stephanos’ own milestones and accomplishments are the product of a long and difficult journey.

Through his ups and downs, he has grown into a thoughtful, caring, compassionate and talented adult who approaches you when you are upset and gets excited when his siblings visit. Perhaps the greatest thing Stephanos has done is inspire the people around him. His family, friends, teachers and other kids get to see his progress and have hope.  Stephanos’ story gives hope to newly diagnosed families that it will get better and even if it doesn’t there is a group of people who will stand by them. He has inspired his parents and my parents to take action and to speak up for him and for all the autism families who need it.

This is just the tip of the iceberg when getting to know Stephanos. I’ll be telling you all about what he likes, dislikes, his calming routines and even his bad days – because who doesn’t have one of those once in a while? We’ll dive into a beautiful, atypical friendship between two boys who accept, acknowledge and respect each other. For example, Stephanos does not like it if you touch your own face or head (same for Christos), yet! somehow they don’t bat an eye lid when one of them does it. Boys eh!

#21andatypical

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21 and atypical: Friendship

Countless interactions, conversations, memes and quotes indicate that friendship is voluntary mutual respect, support, loyalty, laughs and a connection that lasts a lifetime. Your classic examples of a friendship are images of people hanging out, going out, sharing experiences and emotions.

Would you consider it a friendship if the two people involved had never uttered a word to each other? If they had met when they were 7 and gone through primary school, high school, speech therapy, occupational therapy, music therapy, hyperbaric oxygen chamber therapy together without having a play-date or sharing a secret? Is it a voluntary friendship between the two boys if the parents were the ones that fit the friendship description above? If it was the parents who supported each other emotionally, mentally, called, shared their deepest darkest fears and found strength in their shared experiences?

Dr. Suzanne Degges-White , a friendship expert, explains that “True friendships are hallmarked by each member’s desire to engage with the other – it’s about mutual interest in one another’s experiences and thoughts, as well as a sense of ‘belongingness’ and connection…Friendships require reciprocity – of admiration, respect, trust, and emotional and instrumental support.

Christos and Stephanos met in 2005 when they started primary School in Ayia Napa. They were 7 years old and had been diagnosed with ASD – Autism Spectrum Disorder. Since then, they have grown up in each other’s presence.

52158514_408230119981576_493427098757627904_nThis year, they are turning 21 in May and June. This year, they leave school together. This year they find themselves facing a new challenge because governments don’t offer suitable support for adults with autism. This year, once again, they carve out a new path – their own path – which will be one that will enable other adults with autism to follow. Our boys will lead the way – again. They will inspire – again.

Over the next few months we (the two families), in collaboration with the Famagusta Autism Support Group, will be campaigning to raise awareness about autism in adults by attempting to give you a glimpse into Christos’ and Stephanos’ silent friendship. A friendship that is purely mutual respect and acceptance. A friendship that is as unique as the two gentlemen behind it.

The mission of the 21 and Atypical awareness campaign is to document how one pair of children with autism grew up to become adults with autism. We want to shed light on the highs and lows of their journey to adulthood through stories, memories, dreams and ambitions with an aim to create a world in which they are simply ‘adults’ accepted and accommodated by our societies. We hope that their story will inspire you to help us or your local autism group/organisation/neighbouring family build foundations for adults with autism to grow, set down roots and pave the way to a more positive future.

 

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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. 😊

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An autism sister watching Atypical: Season 2, Episode 1

FYI: This is what I thought of Atypical Season 1.

“There is a hole in the Antarctic the size of Maine.  It’s … the result of hot water bubbling under the ice. Invisible, but destroying the ice sheets from under the surface.”

I am completely enamored with this portrayal of an autism family unit – For two reasons.

42748877_724721124557754_6401491820877971456_nReason 1. [the hole is] the result of hot water bubbling under the ice. Invisible, but destroying the ice sheets from under the surface.

Chris and I were raised in a loving family unit for many years before it broke down. The way the four of us handled the break down was by letting the water boil and strip us, one sheet at a time. Throughout that time, we  treated each other in different ways – not always pleasant. We never pretended things were okay for Christos’ sake, and if we did we were really bad at it. See, autism doesn’t mean that it’s okay to lie to someone you love. Christos has always been treated as a son, a brother first and an autistic child/adult second. In times of chaos we kept the routine. In times of turmoil we treated him the same. We were all a constant presence for him, even when we didn’t want to be in each others company.

As a sibling I have tried to protect him, as a sibling to an autistic brother I was not ready. It’s funny to watch a version of my life on screen, with all the things I thought but never said. To imagine what Christos would have said if he was able to express himself. Despite not telling us what he thought, he was never treated as naive and we have never been under any illusion about his profound ability to understand us and comfort us then and now. He shows me time and time again that he loves me, even though we have scratched, hit and screamed at each other more times than I can remember.

Sure, to outsiders I might look like a jerk for teasing him, pinching him and deliberately making him angry – but, he is my brother first and an autism adult second. I deliberately misplace his things, I try to get away with not washing the dishes, not throwing away an empty bottle, singing in the car, even though I know it will annoy him. What kind of big sister would I be if I didn’t annoy my little brother?

Episode 1 captured the bubbling so well. It was like looking in a mirror to the past – that’s the best way I can think of describing it.

Reason 2. There is a hole in the Antarctic the size of Maine. The hole is always there, whether we acknowledge it or not, we lost something palpable, something that can never be replaced, it can never be the same. Even if the water was frozen again, it wouldn’t be the same water that turned to ice. Nevertheless, a hole doesn’t mean emptiness, it doesn’t mean darkness.

The sheets melted away and each one brought us closer to surface. We were no longer solid, we were no longer boldly assuming that we could stand firm against anything.  Instead, we became fluid – constantly changing, silently powerful, adaptable and immense.

Our relationships became a polynya, which is much stronger, deeper and more mysterious than ice.

*End*

I have been avoiding watching Atypical Season 2 because of how many people told me how good it is and that I have to watch it. It is good. It is !so worth watching. It is also agony to empathise, to let every silence turn into tears, to feel every twitch, every growl of the soul – and I’m only on episode 1.

Give it a chance. Look for the small things, like the little notes around the house, positioning, the routine, the things that are left unsaid.

Look for the bubbles.

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Summer Love

This summer has been a tad amazing. Great weather, amazing friends, trips to remember, drama for weeks and a ton of lols. On the penultimate day of summer 2018 my 2018 summer secures a place in the Hall of Summers with a visit from my brother.

He arrived in the UK on Tuesday and will spend the next four days with me in Canterbury/London along with my mum and yiayia (grandma).

So far, their trip has been eventful to say the least.

Larnaca airport prides itself for being an airport for everyone. They have hosted days with people on the spectrum to experience the process of arrival, security checks, boarding and the aircraft. They have special paraphernalia to identify persons who require special assistance and priority service. In fact, ACI Europe awarded Larnaca International Airport with the first prize, among 500 other European airports from 45 states, in the category of “Most Accessible Airport for disabled persons and persons with reduced mobility.

Unfortunately, my family had to wait for an hour and a half while COBALT airlines found them three seats together – even though my brother had priority. This lead to them boarding the plane last. I assume that making a 20 year old autistic adult wait at check in for an hour and a half is not part of their accessibility offerings.

However, we recognise the efforts made by Hermes and we look forward to the smoothing out of such issues in the future.

We should also recognise that my brother flies quite often and therefore is familiar with airports. We are unable to fathom what would have happened if this was experienced by another person with autism.

Heathrow accessibility support on the other hand is incredible. They are prepared, organised, and trained to help. They act with professionalism and sympathy to people with hidden disabilities and the elderly. Due to Heathrow’s amazing partnerships with Autism West Midlands, the National Autistic Society and Autism Alliance they are ready, willing and able to assist travelers with cognitive disabilities and offer some comfort to their families.

40371016_479740792503127_4261342490960855040_nI must also mention Qatar’s accessibility support which we experienced in December while we were travelling back from Sri Lanka on our own. We were met at the aircraft door and we were accompanied to the door of our connecting flight. We were so comfortable that we didn’t even notice that we were there for 2 hours. This shouldn’t be a surprise since in 2007, the Qatar representative to the UN, Her Highness Sheikha Mozah bint Nasser Al Missned,  put forward a UN General Assembly resolution, to create World Autism Awareness Day. This gave way to a day dedicated to raising awareness about ASD across the world.

I hope that Larnaca and Cobalt will continue to learn and adapt, and one day follow the footsteps of these airports and become inclusive and sympathetic to people who require assistance.

He has adapted to the Underground, national rail and bus journeys better than I have after 10 years of living in the UK. I cannot put into words how proud I am of this boy, because he makes everything seem so easy. That’s the thing about autism – you have to know about it to know about it. And that’s why we are moved to tears when international airports, strangers and society make sure that our kids are looked after.

Of course even though my brother is cool AF, under the calmness of our tough exterior we are consumed by hurricanes because we know that the circumstances are not easy. That is why we worry ourselves sick whenever he is on the move, we don’t eat until he’s finished eating and we don’t sleep until he’s dreaming.

But, any autism family will tell you that stress, hunger and insomnia are a small price to pay for knowing your soulmate.

I will keep you updated on our Big Fat Cypriot Weekend which will be the perfect end to the perfect summer.