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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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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: Planet Blue💙

It’s autism awareness month and you may notice that a lot of the posts are blue. You may also scroll past or see numerous autism-friendly events and educational activities which will be taking place all month, everywhere in the world, in order to increase understanding, acceptance and further support people with autism.

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But why blue for autism? While there’s no definitive answer I think the reasoning is found in the meaning of Blue.

Blue is a colour found in nature such as the pale blue of a daytime sky or the rich dark blue of a deep ocean. It is for this reason that it is described as calm and serene. Blue seeks peace and tranquillity and although life with autism is not calm, Christos and Stephanos feel safe in their own space and surrounded by people that adore them. Stephanos’ godsister, Joanna, remember their days in primary school when Stephanos used to wait for her to pick him up from class for break and hold her hand when they had to play volleyball or basketball at gym. Aren’t you most at peace when you feel safe?

Blue is also a cool colour which can sometimes seem icy, distant or even cold. Before the diagnosis, the speech therapy and before we adjust to this new world of living with autism it can sometimes seem as though they are distant or not interested. When they don’t respond to their name, when they wiggle themselves out of a hug, when they wipe away a kiss, it may seem like a loss but Christos is an affectionate man who intimacy. He laughs with us, eats with us and cries when we are sad. He helps us when we are in pain and he surprises us with hand holding or a kiss. Stephanos, is more social in general and he allows kids to approach and touch him, to hold his hand, to guide him and even to kiss his cheek. He responds and seeks affection from his family while also showing them he loves them daily. The myth about people on the spectrum being unapproachable is one we aim to dispel every day. Don’t you find that you appreciate your alone-time as well?

42816046_319009918650137_5237303023620849664_nBlue is idealistic, it explores and pushed the boundaries of self-expression; in fact, it is the most used colour in business and 53% of country flags incorporate some shade of blue. Christos and Stephanos push limits in communication without words. They are imaginative and creative in their journeys. Stephanos dances, sings, plays music and has his own drawing studio. At school his talents are further cultivated by creating through woodwork and using the hot glue gun to complete his own work. His abilities are not defined by his speech or his ways of stimming and he reminds everyone around him to not underestimate his neurodiversity.

Blue can be conservative and predictable, a safe and secure colour; a traditional colour if you like. Christos used to be notorious for not liking change. Over the years we have seen such massive changes in him in terms of eating habits or changing his daily schedule last minute. He has become open-minded and has broken out of the shell the word ‘autism’ imposed on him. He is safe in his predictability and unpredictable in his emotional intelligence. Change may be difficult for Blue but how many of you are completely comfortable with frequent changes?

Blue also represents freedom. Perhaps freedom of mind, freedom to be whomever they want to be. Free from the restraints and pressures of social ‘norms’, liberated from being confined in one box and ‘fitting in’.

So, it’s autism awareness month and if you are reading this you’ve taken one step to contributing in spreading awareness. Other things you can do are:

Tell someone it’s autism awareness month.

Wear blue; a t shirt, accessory, or even blue jeans with the intention of it being for autism!

Image result for autism awareness puzzle ribbonDisplay the puzzle: The Autism Awareness Puzzle Ribbon is the most recognised symbol of the autism community in the world. Wear the Autism Awareness Puzzle Ribbon – as a pin on your shirt, a magnet on your car, a badge on your blog, or even your Facebook profile picture. The puzzle pattern reflects the complexity of the autism spectrum. The different colours and shapes represent the diversity of the people and families living with the condition. 

Find out what’s happening near you. Many Autism 15032849_10154114892521238_68260037536364233_nSociety local affiliates hold special events in their communities throughout the month of April.

Watch a movie or documentary about autism. Louis Theroux’s documentary “Extreme Love Autism”, Oscar nominated “Life, Animated”, “Autism in Love” on Netflix, “Girls with Autism” on ITV are just a handful of recent depictions of autism.  You can also read about Autism, and it doesn’t have to be a journal, or research. It can be fiction, like “The Curious Incident of the Dog in the Night-Time” by Mark Haddon, “House Rules” by Jodi Picoult or “Memoirs of an Imaginary Friend” by Matthew Dicks.

Donate to your local charity or ours Autism Support Famagusta .

Read #21andAtypical, share your story and #StandUpForAutism .

By embracing the puzzle piece, not the missing puzzle piece, we embrace the piece of our world that is autism. Tomorrow, the world will follow a tradition pioneered by Autism Speaks and Light It Up Blue. And while lighting a blue light doesn’t help parents struggling to balance a job, a family and autism, it raises awareness. Awareness will come from people who notice the different monuments/buildings worldwide going blue, a window in a quiet street displaying a puzzle ribbon, a local business fundraising for autism and they will ask questions about it. They might tell others, or go home and read about it. They may recognise it next time they see it and not stare, they might pass down the knowledge to younger generations.

If we could go into every house and help every family struggling with autism, we would. Instead, we will wear blue and we will tell people to wear blue. We will tell them why and we will talk about autism until all the pieces fit, until everyone understands.

From the Empire State Building in New York, Niagara Falls, the London Eye, Sidney Opera House, Christ the Redeemer in Rio de Janeiro, Petra in Jordan, the Eiffel Tower in Paris, the Leaning Tower of Pisa in Italy, the Taj Mahal in India, the Table Mountain in South Africa, the Burj Al Arab in Dubai, the Canton Tower in China, and the Great Buddha at Hyogo, people all over the world will Light it Up Blue to honour World Autism Awareness Day tomorrow. Will you?

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21 and Atypical: Food, Glorious Food!

IMG_5234“He stares as we bring over the food, picks up the plate, smells it and then if we’re lucky takes a tiny bite; and by tiny I mean that ants would probably carry a bigger bit than the amount he is willing to try. Then comes the silence – we hold our breath, fists clenching, heart racing all waiting to see if he approves of the dish.”  Christos has been eating the same 5 things for most of his life; pasta & tomato sauce, curry & rice, egg & lemon soup, chicken nuggets, toast. When Christos switched to the GFCF diet my dad – chef extraordinaire – jumped to action and created recipes which incorporated all the things Christos wouldn’t try but which were nutritionally essential to his diet. Read more about Christos eating habits on Best food critic in town!

Stephanos was always very choosy with food as well. In 21 and Atypical: Stephanos we described how he went from eating fruity, colourful and varied foods to being reluctant and sceptical of them! He stopped trying new foods around the age of 1. Instead, Stephanos switched to pale coloured foods with a mild palette; for example, Cerelac, plain biscuits, bananas. Fruits with textures or colours stopped appealing to his appetite. Once he was diagnosed he switched over the the GFCF diet.

The GFCF elimination diet requires that all foods containing gluten and casein are removed from the child’s daily food intake. Gluten can be found in wheat, oats, rye, barley, durum, bread, pasta, cereal, cookies, soups, sauces, candy etc. Casein can be found in dairy products in general; milk, butter, cheese, ice cream etc. 

Marilyn Le Breton, author of ‘Diet Intervention and Autism’ explains why the GFCF diet may be the key to unlocking autism: “When you eat, the food you consume is broken down in your stomach… In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly. The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both are very similar to morphine, a highly addictive drug.” In 2018 the Microbiome Journal (here) published a study which claims that Microbiota Transfer Therapy (Fecal microbiota transplant (FMT), also known as a stool transplant, is the process of transplantation of fecal bacteria from a healthy individual into a recipient) alters gut ecosystem and improves gastrointestinal and autism symptoms. – More on this in Hope in Poo .

For both the boys switching to this diet – in Cyprus 20 years ago – was incredibly difficult. Our family used to order and ship maize pasta from Italy, order specialist flour and bread to be baked at bakeries, pack a whole suitcase of suitable products to take on a month long holiday. My parents fought endlessly to convince him to eat these new products and, to some extent, it made a difference! He was less agitated, less tired and more responsive without gluten and cassein. Funnily enough, this year I have had to go on the same diet for health reasons. But now, everyone is falling over themselves to accommodate my dietary requirements. Now, we find it weird if we can’t find gluten-free products anywhere.

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I think back to cooking maize pasta and carrying it around in tupperware with grated halloumi in tin foil to take to restaurants or visits, the smell of egg and lemon soup in our room in the Maldives over a bunsen burner, all the packets of crisps my parents had to ration between the two of us to last him through the holiday. I think back and wonder how did we survive in a world that didn’t understand why we couldn’t just have ‘normal’ pasta? The answer is: parents. Their endless, relentless and ferocious attitude, resilience and unstoppable drive.

Today, Stephanos eats strawberries, salad vegetables and all kinds of colourful and flavoursome fruits. In fact,m the first time he tried a red strawberry he was 8 years old. Hi diet is varied and he doesn’t struggle to try new kinds of food at school or restaurants or even at home. Christos eats fish, meat, sauces and has no issue trying buffet options or airplane food.

The boys love food. In fact, they plan their day around it (just like you and me). Their body just digests food differently to some people. Following the GFCF diet as a neurotypical adult I have noticed so many advantages in my body, mood, mental health and my every day life. I don’t feel fatigued, bloated, grumpy, my skin is glowing, my hair is growing, my mind is alert and keen. Maybe the advantages of the GFCF diet are just a glimpse in the many, many things we all have in common.

#21andAtypical – but atypical according to whom?

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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: More than meets the eye

Autism traits are not immediately visible all the time. It may take a while to notice the stimming, the echolalia or the sensory deprivation. For decades we have been trying to be as mainstream as possible, but the tables are turning now and our uniqueness is being celebrated. People are telling their stories and we are telling Christos and Stephanos’ stories with the hope being that you look a bit closer, stare a bit less and learn a bit more next time you meet a family on the spectrum. 

Christos and Stephanos are just 2 neurodiverse adults. They communicate through PECS or simple sentences, they reach milestones at their own pace, they love, laugh and feel the same as you. They are a bit more sensitive to light or noise and may come to a conclusion a different way but they are an equal part of ‘your’ world. This society we have conjured up, with its timeframes, standards and expectations is in constant motion and it is up to us to make sure no one gets left behind just because they don’t fit into a make-believe box. The perpetual need to fit in is what makes up most of the worries autism families have. Will he fit in? Will she support herself? What if they get lost? Will they find their way? Who will be there when we’re gone? The therapies they undergo are for their own quality of life, but the social conditioning they go through – no flapping, no screaming, no stimming etc – comes from fear of being different. It stems from the desperation of wondering what society will do to them if we aren’t there.

Then, they do something amazing and we forget all about society’s fictional rules and its illusions of greatness. Because we witness greatness every day. Our kids are living proof that just because someone said it was impossible doesn’t mean it is. That just because they didn’t speak until they were 8 doesn’t mean they don’t understand what we say. They stomp all over misconceptions and create worlds that work on inspiration, love and growth. We see this every day with our kids but we spend so long worrying and sheltering them that we forget how intelligent they are and that they have been watching us and learning for years while we were too busy talking. 

thumbnail_8C5CE67D-701A-4313-916B-8E79ACC208CDStephanos’ mum remembers a cruise trip to the Greek Islands with all 6 kids. “On the second day we were all upstairs playing cards and Steph was stimming around us, in our line of vision. There were 6 pair of eyes focused on playing cards but also watching Steph. At some point, in a split second, he was gone. We lost him. Steph’s verbal abilities at that age were limited but he could say “toilet” and “help”. Immediately, the 6 of us had spread out on both sides of the ship, on all the floors, in the lifts and asking people if they had seen him. Finally, some restaurant guests who knew us from Ayia Napa said they had seen him in the lift going down. We went to our floor immediately and found him in the loo. He used the lift, went to the correct floor and corridor and knocked on his brother’s room door which was different to our own! What is amazing to me is that he knew our room was empty and so knocked on his brother’s door instead.” It may seem menial to you, going to the loo when you need to, but it was a milestone for Stephanos. It was an eye-opener for the family, and a reminder that just because they are overprotective and Stephanos doesn’t speak  it doesn’t mean that he is not fully aware of his surroundings or capable to make rational decisions to fit his needs.

Last year, when Christos and I were travelling back from Sri Lanka we were sat on 29746571_10156190751480030_515778963_othe plane repeating his schedule and what times he would eat what. So we’re cuddling under the blankets talking about pasta when I realised I had to explain time zones to my brother who is obsessed with time. IMAGINE, trying to explain time zones to someone with only numbers and the words – dad, mum, Christos, Theodora, airplane, and (obviously) pasta.  I showed him the time in Colombo and said this is dad, the time in Doha which is where Christos and Theodora are going, and the time in Cyprus where mum is. Then explained that the airplane would take off and land in between Colombo and Cyprus at Doha. He was staring at the phone and me while I’m making grand gestures and airplane noises and showing him numbers. I wasn’t sure he got it, I underestimated him. Then we got to Doha and he asked me to change the time on my phone to the local time, for which he had done the math in his head, and did the same when we landed in Cyprus. Now, he has a globe in his room and can point to where we all are and where we’re going next. 

We’ve seen these boys grow, learn and make progress in front of our eyes. Yet, somehow these false thresholds set by our communities seep into our subconscious and make us forget how extraordinarily ordinary they can be. They quickly catch us by surprise, always a step ahead, whether it’s giving us directions or using words we didn’t even know they knew and remind us to not stereotype but to learn about the talents our kids have and to stop thinking there’s a limit to their potential.

Just because a computer is not running Windows doesn’t mean that it’s broken. Not all the features of atypical human operating systems are bugs” – Neurotribes Read more about Autism Advantages.

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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