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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.