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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: The stories we don’t tell

I remember so many 2am’s almost drifting into sleep when I would hear Christos whisper “Oh” and wait for me to repeat it. If i didn’ respond he would climb int bed with me until I did. Sometimes I didn’t use the right volume, tone or accent so he repeated it until I did, all night and as long as he wasn’t asleep himself.  By the time 6am came around and all three of us struggled to put his socks on, the right way. They need to be put on perfectly, if not you start again. If you touch the wrong spot, or accidentally stroke his ankle, toe at any point you have to start again. If you tickle him or give him an inadvertent ‘Lets go’ pat, you start again. If you don’t start at the right end, if both sides aren’t moving up at the same pace, if its too high or too low, you start again, you start again, you start again. No loose ends, no marks, no holes otherwise you start again. Even if its not visible, is it a new pair? Are you sure they’re a pair? Start again, just in case. Then come the shoes. Something’s not right; is it the shoes or the socks? Take everything off and start again. By the time we were ready for school we had already lived an entire working day.

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Stephanos, while in bed at night will hear his mum – or whoever is downstairs – clear their throat and he will run down the stairs, go straight outsidem, lie flat on the ground in the garden and sing a song until he is not upset and he is ready to go back to bed. Just like anyone of us the boys have characters of their own. They get angry when people don’t understand them, when a sound is so loud or a light is so bright that it interferes with their welbeing – wouldn’t you? Sometimes, they shout, scream and lose control – don’t you? The difference is that you can communicate your frustration, you can talk about it and find ways forward.

But what if you couldn’t?

Christos’ triggers could have been anything when he was growing up. We were all learning, trying to get to know this ball of fire that was gifted to us. Sometimes the consequence was a million ‘Ohs’, sometimes it was scratching at a mosquito bite until it was raw. I remember his arms, legs and face bear the scars of his incessant picking at every bit of his skin and tearing off any protection we tried to offer. He twisted his arm, legs and head hair to the point of pulling it off. Other times, he would be hitting his head with a closed fist so hard it left a mark, punching his arms and legs while clenching his jaw in frustration to whatever it was we had done wrong. What could we do? He was obsessed with every little spot on him, us, clothes items around the house. We would wipe and wipe and wipe until our hands we sore but whatever it was he could see was still there. When he became a teenager his frustration grew, and so did he. He is 6ft something and 90kg, he overshadows me at 5.2ft (and whatever weight I am depending on the year) and the rest of our family, teachers, friends. He would throw anything that was in his hand. I remember him once throwing his school bag over a tall bush and into the middle of the road. I remember him squeezing my fingers in his palm until I cried or squeezing my nans arm until he got yelled at by mum. He dug his nails so hard into his own skin that it bled and then he would cry.

At 13, Stephanos broke a window in his home. His injuries were so bad that he needed surgery. The next day, he woke up in pain, disorientated, and with stitches. He ripped them off during his meltdown despite his family’s best and desperate efforts to help. His self-harm started during his puberty. He used a closed fist to hit the side of his face so hard that he caused the retina in his eye to detach. His family lived with his rage and self-harm every day for years, this had become commonplace. He didn’t communicate to say something felt off but one day his mum noticed a whiteness in his eye and took him to the doctor who confirmed that Stephanos is blind in one eye. To help control his outbursts, his family used medication to calm him down but they say they never got to the root of the aggression, which peaked at 16/7 years old. Was it pain? Was it sensory? All they know was that they felt lost.

The families all feel guilt for not doing enough and for any harm the boys inflict on themselves, for every behaviour, every sound or scream. Not only are they judged and stared at for every atypical behaviour, they judge themselves always striving to do and give more. What parent doesn’t feel that? Our parent’s stood up, against all odds, in a society that didn’t even know the word ‘autism’ and created functioning, well-behaved adults who understand, laugh and love. What were you like as a teenager? And if you weren’t taught to refrain yourselves would you know how to?

Sensory sensitivity can be a real struggle. We could lie and say we are used to it after 20 years but it’s still frustrating and I still get annoyed and fight with Christos. The only advice that exists is keep at it, you’ll get it right at some point. It’s not their fault, and it sure isn’t your fault. We don’t understand what they see, hear or feel and that is in no way your fault. To everyone else who doesn’t live with autism – sometimes we don’t even hear the screaming because we live in a ball of scream. Other times, we don’t react to the hitting or pulling or scratching or throwing because we live in a world where silence is not the typical. Once the 100th storm of the day has passed, Stephanos’ calming depends on which behaviour has been triggered. He may go lie down by the front door, run to the back of the house, sing a song and stim with his index finger or stay flat down reciting a song. He will shred flowers, grass and weeds through his fingers, at day or night and for hours. He goes back in the house, he smiles and suddenly the slate is wiped. You have the strength to take on another 7 storms. Once the millionth ‘Oh’ has been said, Christos will just repeat our names over and over until we look like we are happy. He will shower us with cuddles and make us apologise for what we did to cause it. He will laugh until we laugh and he will cry if we cry. He will apologise and smile. Suddenly my fingers don’t hurt anymore and his kissy face makes it all ok.

So what happens when we aren’t there? Where will these reactions be housed? Where 11165285_10206036337501718_7756282778690047842_nwill they find forgiveness? How will they be understood? How do you size them up, find what they need and keep them safe? In Cyprus, in our case, the answer is to create something our government doesn’t offer – or can’t offer quickly enough. We work to find ways to fund high quality facilities which are based on ethical and inspiring opportunities for children and young adults with autism in the Famagusta area. To recruit and ensure that their education and development doesn’t stop just because being ‘typical’ means you leave school at 18. The members of the Autism Support Famagusta charity work all day, take care of their family and rack their brains to facilitate activities and growth based on individual interests and skills. Two of the boys going into this home will be Christos and Stephanos will you help?

The stories we don’t tell are the stories where we are all to blame for not making this world a world we can all live, grow and be in. They are stories in which our pursuit for comfortable and easy conversations are depriving young adults their future. They are the stories in which we are the villains for not caring enough because it’s not our ‘problem’. Christos and Stephanos hide from the Disney villains on the TV and they turn the villains around them to warriors. Which one are you? And what will you do this April, for autism awareness month, to make sure everyone has a place in this world? Until every last piece of the puzzle fits?

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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: 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.

52315751_615955368857944_8055010700344426496_n

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: Hakuna Matata

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

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

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

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

#21andAtypical

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21 and Atypical: 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.