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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: The SMILE Project

64582350_2087828768006568_1085529915794653184_oThe SMILE Project is a culmination of the fears, determination and strength of the autism families in the Famagusta area in Cyprus. It was born out of fear of what will happen to our adults with autism who require care. It was created with determination to establish a safe, educational space for our kids where the state has failed. It is opening today because of the fearlessness and strength of those involved. Those who have done the manual work, donating time and money to ensure that our gentle giants do not suffer the consequences of a state that doesn’t understand them. Today, 19th June at 7:30pm in Paralimni, we open our doors to 3 young adults who pave the way to a better future for all adults with autism in Cyprus.

The Smile Project will be based in the Famagusta Area (Paralimni) and will provide day-care services for young autistic adults of 21 years old and over. 64912747_2382131665339646_8103174948933074944_nIn every autism family, there comes that dreaded time where you have to think of what’s next. Our families and Autism Support Famagusta powered through obstacles, lack of funding and the absence of support to imagine what would happen after State school comes to an end. We, the families, know that there is no provision or services with specialised staffing for young adults with autism in our area – so we needed to act.

The future of our children is a concern for all parents.
Who will take care of them?
Where will he/she live?
Will they be safe and have a quality of life when we are no longer here?

The SMILE project is a massive achievement and a stepping stone. The ultimate goal will be a 24-hour care centre with overnight stay but also a day care provision for adults on the autism spectrum. The centre will offer sensory sensitive activities tailored to each child, music therapy, speech therapy, arts and crafts etc.

Our children’s learning will not stop. We are working together towards the same goal which is to provide support to families with children on the autism spectrum.

As a group, we are blessed to have had the support of the Municipality of Ayia Napa, the Mayor, local councillors and staff every step of the way. We are hopeful and confident that other Municipalities in Cyprus will embrace and support us to pave the way to a brighter future for autism in our beautiful island.

So.. join us – all you have to do is smile.

If you want to help:

Donate here https://www.autismsupportfamagusta.com/donate-index-impact

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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: 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: Popping to the shops

In 2018 Sainsbury’s launched a new trial to help enhance the shopping experience for customers with hidden disabilities. The trial enables customers with hidden disabilities to collect a lanyard which indicates to colleagues that extra support is needed. The scheme helps those with hidden disabilities, such as autism, dementia, visual or hearing impairment by alerting staff that extra support may be needed while shopping. Lanyards are available to collect for free and are for each customer to keep so they can wear it every time they come into store! Not all Sainsbury’s stores have implemented the initiative yet. Sainsbury’s is the first supermarket to test the initiative, following Gatwick Airport’s successful launch and, by using the same sunflower lanyards as Gatwick and Heathrow Airport, Sainsbury’s sets an example for other retailers to follow.

In Shopping with Autism I described how, before Christos started school and was able to communicate with us better through PECS, going shopping with him was a nightmare. It was like walking into a living breathing nightmare. It was loud, it was cold, it was too much. His sensory sensitivity was off the roof. He cried, he was on the floors, he was red, his clothes would come off, he was screaming and there was nothing we could do to console him. We would return home traumatised after every trip – and there were a lot of trips. A couple of years later, we could stop the screaming, by getting him chocolate and crisps. Then came the years where we would go in and didn’t need to literally drag him across the floor to the till. My mum stopped apologising to everyone. When he got a bit older, we would make a list, he’d know where everything was and there was no crying, he would organise the shelves. If something in aisle 4 was supposed to be in aisle 12, he knew and he would fix it. Now? It’s one of his favourite errands. You can tell him what you want, he’ll tell you what he wants, you’ll try and offer a compromise, you’ll lose and everyone goes home happy. 9 times out of 10, Christos will jump at the chance to go to the shop; big or small it doesn’t matter! He will pick everything and stand over my mum and shout and order her around until everything is unpacked and stored back home. Now, he has the skills to shop for himself. This growth, this maturity and his development is a testament to my parents’ unwavering will to prepare him for the trial and tribulations of every day life.

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Stephanos is not interested nor does he get involved in the shopping aspect of daily life.  He knows and trusts his family to provide him with food stuffs, he is adaptable in brand names and is happy with to have his small juice, ice cream or chocolate and let everyone else deal with the hassle of a supermarket. He doesn’t go to the shops and will not get involved unless he is asked to by his family. When he is asked, he kindly obliges and goes back to his snacks. Whereas, Christos will make you do it all his way. Stephanos’ shopping routine took roots when he, his dad and brother took him to the supermarket with and got him a juice, a chocolate or an ice cream. This simple action, possible done to distract from a tantrum, triggered a routine which he follows when he does participate in a shopping trip. The brands of juice, chocolate or ice cream are not always the same  but he always picks out the three items mentioned above. But, just like his pal, his early encounters with big markets, the sounds, smells, people, intrusion of private space would trigger him when he was younger. At 12 years old, Stephanos had a huge meltdown in a shop in the UK. His mum remembers it as a huge episode including self-injury and the worst she had had to deal with up until that time. Even though the family don’t usually take him to big markets so as to spare him the angst, when he does join he is much better equipped to deal with a mood, or someone clearing their throat. While he may get a bit upset and start stimming, overall he is happy with his treats. I mean, I order everything online just so I can avoid these places, why should our boys feel any different?

The reason we collate and write about these stories is to give you an insight into autism daily life. It’s not always easy but it’s not always difficult either! These boys have gone from kicking and screaming to young adults who know how to help their parents, how to negotiate and take a step back when it all becomes too overwhelming. Christos and Stephanos’ stories are being told so that next time, when you see a parent desperately trying to get their child off the floor, or a kid making sure all the water bottles are facing the same way you may see a bit more than what’s on the surface. You may see the need to help make this world more autism-friendly and you may remember that milestones are different for all of us. You might remember these stories and realise how this was a millionstone for both of them.

My brother is a controlling shopper and Stephanos would just let him get on with it.  When you see them and spend time with them you always get the impression that the boys have a full understanding of each other and respect each other’s character, boundaries and behaviours.

#21andatypical

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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

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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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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