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How being an autism sibling is getting me through the Covid-19 pandemic

Today is a day dedicated to autism awareness/acceptance/knowledge. In the midst of all the powerful things happening around us and in our minds, we need inspiration. We need a good cry about something, well, good. So today, give yourself a break and take a moment to read an autism family’s story (more resources below).

In honour of all the autism parents, persons, siblings, friends, families out there I’ll share a reflection on my story with you today.  I’ve compiled a list of traits, behaviours, thoughts that are getting me through this apocalyptic situation and they are all because of Christos.

Patience is so difficult at the best of times.

But growing up with as an autism sibling  my patience was tested every moment. From getting up/staying up early hours, to not being able to watch what I wanted, eat or drink what I wanted, go anywhere, to not being allowed to play with him, share with him or laugh with him – I was a spare. I was only needed when he needed me and until then I had to sit back, give him what he wanted and perform on queue.

I had to, it wasn’t a choice. When I heard I was getting a baby brother I never thought it would be baby brother who didn’t want me. I was the first-born, the first-grandchild and I was used to a life of glam and attention. Christos came and put me in my place – he stripped me of my persona and told me to sit back and observe. After a few years of laying low he said his first words. He gave hugs and told us he loved us.

Patience is a glimpse into what could be, what is coming, the bigger picture, ambition, hope and dreams. For me it’s all of us coming out of this and going out to the beach or restaurants or seeing friends and, of course, flying home to see my family.

Life with autism is like preparing for all sorts of apocalypses (it’s a word!).

For example, the crisis of not having enough chicken to make 6 identical chicken nuggets, the chaos that ensues running out of salt and vinegar crisps while on holiday in a third world country, the turmoil of not finding a DVD, a jumper, a sock, or a toy.

So we had crates of gluten free pasta shipped from Italy, a freezer full of nuggets ready to fry, boxes of Omega-3 so he wouldn’t miss a dose, long life goats milk, identical spare undershirts/underwear and luggage full of crisps and lemons from Cyprus which travelled all the way to and around Sri Lanka.

Stockpiling wasn’t panic-buying for an autism family, it was a lesson learnt. My parents’ mission was to keep the peace and make life for him as accessible as possible. In recent years the stock is inspected and maintained by the man himself; he updates lists and makes sure nothing goes missing without good reason. Somehow this filtered into my own life which means I plan ahead and have back ups to my back ups which has helped this last month as I haven’t had to wrestle for basic necessities.

Quarantined with yourself: a love/hate relationship.

Being an autism sibling means a lot of loving your own company. When my baby brother decided to retreat into his own beautiful brain I was shut out. I saw him entertain himself for hours without the need for any interaction. So I followed suit. I played games I imagined us playing together on my own, I turned to reading, I started and gave up on so many diaries. As a teen I was forced to go through most of the big life changes on my own for different reasons and spending every free minute helping with his care. When I moved to the UK I was living alone and had made few/if any new friends during Uni; most of my undegrad was me hanging out with people online or spending time alone, watching stuff, creating, and learning. It got to a low point and so I picked up and started wearing a Dora mask, pretending to be a social butterfly but that didn’t last long either.

My brother’s fearlessness in being himself forced me to take a chance on being myself too. He was unapologetic in wanting everything to be in order, ruthless in keeping with his routine and so sure of himself whenever he made a decision on what he wanted. I’ve wanted that all my life. So I started hanging out with myself, learning, listening, noticing. I started making decisions that I didn’t dread following through on and settled into being me, unapologetically.

Even though I am lucky enough to share my quarantine with the perfect partner, I still need that confidence to follow through with it and to understand my reactions every day.

Repeat, repeat.

I don’t even know where to start with this. I repeat the same examples on this blog – repeating sounds until he fell asleep, putting on socks, reiterating daily schedules, what time it is, what volume it is, what we will eat, what we will wear. Life with Christos is scheduled down to the minute. In Disneyland, we did the same route and same rides every day, in Sri Lanka he ate the same food every lunch and dinner, in Cyprus he plays his game boy at the same time every day. Have a scroll through the blog and see if there is a single post that doesn’t talk about repetition in some way.

He taught me that the known is comfortable, it takes away the worry of uncertainty and it frees up the mind to focus. During this whole pandemic we are also planning a house move. Without my autism sibling training I would be a mess. Instead, it’s all planned with packing schedules, lists and a routine.

44333001_353571598538233_179029183383470080_nThe list goes on but it’s not about quantity, it’s all about quality – another Perera lesson. I hope you have your coping mechanisms for this pandemic, but here’s a few resources if you are an autism family that needs a bit more care.

Another autism awareness day/month away from Christos, and a hard one at that. So please take a moment to read an autism story , or check in with your local group to see if there is anything you can support them with, send links to resources to autism families who may be struggling with daily schedules , wear blue, paint your nails blue, tell people why they’re blue.

Be kind, safe and take care of each other.

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Eternal Valentine

Love in an autism home means something different to the rest of the world. It means hassling your little bro for attention when he won’t play with you. It means finishing your homework and then doing his homework and speech therapy with him just so you can spend time together. Watching the same movie/scene over and over just to share experiences with him. It means staying up every night until he falls asleep first repeating his words. It means giving him all your tapes, toys, CDs, phones in the hope that it calms him down. It means running after him. It means making sure he is okay first.  

Love in an autism home is fierce and overwhelming. As a sibling, I learned at the age of 10 that my childhood, teens and adulthood weren’t my own. As the big sister I thought this little boy was going to adore me, follow me around and annoy me for the rest of my life. Instead, he flipped it all on me and made me the follower.

Love in an autism home breaks you apart and builds you back up. It takes control of every little bit of your soul – even the ones you don’t find out about until years later – and it makes every piece of you better. It gives you the highest highs and some lows far lower than I ever knew were possible.

Love in an autism home takes away your identity. Whoever you thought you were is gone and now you’re someone new. Someone capable of things you never thought of – strength, emotional intelligence, thinking beyond the imaginable. It forces you to love yourself.

Love in an autism home inspires fears bigger than anything you can imagine. I am crippled by the fear of something happening to me because what would happen to him? Who would understand him and give him what he needs? Will he have a home and will he be safe? My fears manifest in love for myself; taking care of me and being overprotective of my welbeing. It made me selfish when it comes to health and forced me to be prepared for any eventuality I can imagine.

Love in an autism home takes away your eyesight and gives you perception. It leaves you blind to egos and gives you uninterrupted vision to see beyond the visible. To dream big and look forward to a future that is waiting to be written by the struggle and fight and determination of autism families for autism families.

On this day I reflect on a life so full of love and I am so grateful for my eternal Valentine – my brother. I hope I get to spend all my lifetimes being inspired by you.

Happy Valentines, Galentines, Malentines, Palentines and Friday to all of you ❤

 

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My hopes for you and me

My 20s were full of love, laughter, crying, drama, fights, loses, wins, deal breakers, trips, transitions, degrees, decisions, heartbreaks, booze, dreams and so much more. Sometimes I wonder what your 20 would have been like if you were neurotypical. I wonder if we would still be a family, how close we would be and if I82233631_2531887710466115_4314041005243367424_n would worry about you. Would we hang out? Send cards? Meet on special occasions? Would our lives depend on each others?

Probably no. But for better or for worse, our lives are intertwined. We are close, I worry about you, we hang out, send cards and meet on special occasions. All these banal things take a completely different meaning but that meaning is ours – yours and mine.

To be honest, I am nowhere near where I thought I would be at 30 but I know where I’m going. I know where home is. I can make plans and dream big – I’m doing better. I spent my 20s chasing goals and worrying that I didn’t belong to one place or have a home but I’ve realised that anywhere with people is home – I have so many homes and that’s okay. You taught me that. In the last decade you have moved to 7 different homes, changed 3 schools and you were okay.

In my 30s I have all I need and maybe that was the gold I was so desperate to find – not earning enough to support us both or having a high-stakes powerhouse job but being a powerhouse and strong enough to be okay with not being okay, being irresponsible to learn responsibility, being broken to become resourceful and being miserable to appreciating happiness.

My hopes for you are that you are happy where you are, with the people you are with. I hope that when you look at yourself you love you, and that when you don’t you can lean back into our love for you. I hope you continue living your life knowing that there are people around you who know you and can represent you and keep you safe. In return, I promise to be safe so that you always have a voice. I promise to live the life I have at this home away from you and always come home to you – for all the decades in my life and yours and beyond.

Thank you to everyone who has donated to Autism Support Famagusta over the last few weeks. I am aware of some tech issues but even if you were not able to donate, your intentions mean that you can out there instead and spread what you’ve learned like a kind of autism awareness plague.

To donate: http://www.autismsupportfamagusta.com/donate

Thank you.

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Hear me roar (about autism): 2013-2014

I am saying goodbye to my 20s this year and will be fundraising for the Smile Project by Autism Support Famagusta. Smile is the first and only day care centre for adults with autism in Famagusta, Cyprus – and it hosts my brother. 

To donate please follow this link and use the hashtag #30smiles

After my graduation I was a bit lost. I didn’t know if I wanted to pursue a career in law, I isolated my self and spent most of my days on the couch or in bed. I had decided not to return home (to Cyprus) all the pursuit of happiness and love. Only, after three years of living away from home I still wasn’t any wiser re the happiness and completely lost about the love bit. One gloomy day, I was re re watching an old series when an episode about writing spoke to me. Coincidentally, I had a little run-in with blog writing at a temp job where I wrote a post about unemployment and the woes of being a law graduate in the state of today’s economy. The process, as well as the response, made me think this was destiny (I believed in destiny when I was 22, just like you did). So, I got out of bed and did some research. Ok I sat up in bed and did some research.

The blog tips I got from various internet sources, sitcoms and friends were “Be yourself”, “Spell check” and “Pick a theme, write about something you’re passionate about” – so what was I passionate about? Looking back now, it was so obvious and I don’t know why it took that long to find the answer. I was still learning about myself and crawling my way out of my own personal dark ages for the previous ten years so I had to dig deep and shed all the layers and masks I had on. One night, I was Skyping home and Christos was being a tiger on camera. After that I spoke to dad about the issues he was having at school. I hung up, cried and realised I’m passionate about him and his future. Destiny (i thought) struck again when I read a guest blog article on BBC about how autistic children are presented with special jargon phrases. Mark Neary captured it completely; it made me laugh out loud and at the same time gave me the courage to create this page and write my first post .

199123_10150167935090030_1697873_n (1)The next two years where a blur. The blog took off in a way that I never expected and so did I. I had so much to say, share, relive, consider, reflect on and learn. Writing all this down made me cry every time. Suddenly, in two years I went from re re watching series in bed and avoiding my feelings to advocating for rights in Canada, Australia, France, the UK and writing articles about us in Greek, writing to MPs and governments around the world. I was approached by autism charities, organisations, radio stations, TV stations about my story (links to articles under Published tab on main page). There was no hiding anymore, no masks.

Writing became a regular thing. It got me out of bed, it made me think, it made me angry, it made me change things and perceptions around me. I had found my voice and the roar I had been suppressing was bursting out of me. My life was filled with people from all around the world who were going through the same thing I was, who wanted guidance, help or advice. People who had just gotten a diagnosis, or who didn’t know which therapy to go for, or parents who worried about how the siblings of the kid with autism would be affected. Writing about autism brought me the happiness I was looking for and it made me look at me in a different way. I knew so much more than I gave myself credit for. I had so much to give and the sadness and anger I felt transformed into inspiration and were channelled into this blog – which made a difference in other peoples’ lives but, perhaps more importantly it mended my ties with my family, and myself. I learned so much about myself through writing about Christos – yet another gift he has given me.

I published 52 posts on the blog in 2013/2014 and, today, this is my 201st post. On the second day of 2020 I won’t set any resolutions because it doesn’t matter what you think you want to do or what is expected of you – what you are is already you. So I am grateful for transformation my brother inspired in the last 21 years, I am thankful for all the friends we have around the world through this blog and I am more inspired than ever to continue advocating for this cause.

I hope you will join me.

81516919_622859898450805_1391874900632797184_n

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The girl with the Dora mask: 2011-2012

I am saying goodbye to my 20s this year and to counteract the selfish need to reflect on the last decade I will be fundraising for the Smile Project by Autism Support Famagusta. Smile is the first and only day care centre for adults with autism in Famagusta, Cyprus.

For more information: Smiling September

To donate please follow this link and use the hashtag #30smiles

While the turmoils at home seemed to be neverending I thought that being away from it meant I was indestructible. I had started an LLM in a new city and it was intoxicating. In those years (my social years) I made friends for life, lost a few on the way but most importantly I found a way to not be me and it felt great. I was masking my sorrow with a mask no one knew about – not even me. Needless to say my social years didn’t last long – i’m a house cat at heart. So after too many jagerbombs, heartbreaks and too many late nights I buckled down, did the work and got my first masters. It felt like an accomplishment but not my own.

After this, I made the decision to stay in the UK permanently. It may sound selfish but I could never find out who I was in Cyprus; I was a child of divorce, sister to a boy with autism, wanted a career in law, but I didn’t even know basic things about myself; what food I liked, what music moved me or even how I liked to dress. Up until that point I was just faking being me trying to be the me I thought I was supposed to be.

So I cut ties with with all that, got a job and started working towards getting a training contract.

Today: I look at my brother who has lived his life so openly. No masks, no pretending – he has known who he is since the start. Who knows what mask he would be forced to wear if he was like us? What he would be forced to suppress/do just to fit in. So today, after years of mistakes and learning from my brother, i can proudly stand next to him without a mask. I don’t have peppers in my food because I don’t enjoy them, i don’t like horrors/thrillers, i prefer rain to sunshine and Pizza Hut to Dominos (that’s right), and I’d rather stay in all day and hang out with my bro (even though we annoy eachother) than go out into the world without him.

 

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Then and now: 2010

I am saying goodbye to my 20s this year and to counteract the selfish need to reflect on the last decade I will be fundraising for the Smile Project by Autism Support Famagusta. Smile is the first and only day care centre for adults with autism in Famagusta, Cyprus.

For more information: Smiling September

To donate please follow this link and use the hashtag #30smiles

Hindsight is an incredible feeling isn’t it? I look back at who I was then and I can see clearly how I got to where I am. My last decade plays like a film in front of my eyes and at centre stage is Christos because there is nothing I am more proud of in life that to be his other half. To live up to his expectations every day, to earn and keep his trust, to walk beside him in life.

It wasn’t always my priority though. Even though he was the driving force behind my decision to move to the UK to study, my teens are a blur for the most part. See,  we all have ways of getting by and mine is that I block out parts of life/the past I don’t want to remember.

I was lost, looking for meaning, love, somewhere to belong and in a constant battle between the need to be selfish and take care of me and feeling guilty for not being selfless. But with the bad there was good and I’ll try to focus on those. Through all the family drama, heartbreak and late nights that consumed my 2010 there was light.

This picture is from Halloween 2010. Because, I don’t have any other pictures of me and my brother that year. It was a selfish year and but looking back, 10 years later, it had to be. There’s a part of my heart that will always be hollow with all the moments of Christo’s life I missed out on before he outgrew us all. But like any family unit, we have to take care of ourselves before we can take care of each other – we just didn’t know back then. Mum took him to a parade in Cyprus and he dressed as Woody from Toy Story, it was one of his favourite animation films. We watched it over and over and over, and knew all the words. I remember him asking to watch it and when Sid would come up he would hide. 

This year? We get to spend the entire day together in Sri Lanka, making memories and cementing our bond. The difference is that this is a selfless year. We have both overcome our individual obstacles and experiences that weighed us down – Christos has moved to a new school and is tackling issues bigger than him or us. He has paved the way for other families of kids and adults with autism to look forward to a future which doesn’t condemn them to sit on the sidelines of a society that doesn’t have money or time to invest in their abilities.

I’m not going to lie and say it’s been smooth sailing because we had a tough day yesterday. I travelled through 5 time zones in 3 days and it took its toll. The repetition of the routine and his need for everything to be the same is exhausting at the best of times. But today, we are both rested, we have a plan and we are back on track. 

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21 and Atypical: A very Disney birthday

60007825_1102919996568611_2483072549760532480_nChristos celebrated his 21 birthday on Monday 6 May 2019 at the Disneyland Parks in Paris. He was spoiled for 4 days with mum running after him and buying him basically anything he wanted. We were a bit grumpy on one of the days due to headaches but looking around at all the families and all the crying kids I’m convinced that we didn’t stand out. There’s something in the air in Disney that makes every one (adult or not) have at least one tantrum.

Disneyland Paris is very accessible to people with different abilities. You get a special pass delivered to the hotel which means that you can skip queues and get special seats fit for your needs. Their maps have an accessibility guide which describes each ride (how loud, how many steps, how bright etc). Overall, the Disney experience is magical. He smiled a lot, cried a bit, pretended to cry a few times and on his birthday he let the restaurant sing him happy birthday and he blew out his candles.

I often wonder if he knows what a birthday is, if he gets excited. But birthdays are 59918925_406917366526247_477245289778905088_n (1)weird and, really, what is there to ‘know’? So, he waits for the song to finish, he blows out the candles and gets to eat cake after. Christos won’t get Facebook posts wishing him happy birthday, he won’t get texts, he won’t go out and celebrate with his friends, he won’t ask for money to spend, he won’t ask for expensive presents, he won’t make a big show of opening presents. The greatest gift we gave him on Monday was sticking to the programme we made.

I ask my mum if she thinks he knows I am his sister or whether he thinks I’m some girl who shows up a couple of days a year to annoy him. She said I’m crazy. But I have lived in a different country for 11 years and, yes, I know all the things I can say to myself to make it okay. Yet since Tuesday when he gave me a rushed kiss and flew back to Cyprus, I haven’t been able to stop being sad. When I’m with him I try to get into his routine and I try to do things for him but he doesn’t want me to – he wants mum to put his hat on, or to hold his hand, make his breakfast etc. And, I get it because mum, dad, yiayia and pappou are the people who are there for him every day. 10/10 times he needs something I am not there to help him and he knows it. It empties me – this feeling of wanting but not being there. You may think that living with autism is hard, but let me tell you that being away from it is just as painful.

Just like my mum, my family and friends will tell me I’m crazy and that he loves me. They will point out all the nuances that reaffirm that he knows who I am and for a couple of months, that will be enough for me to be okay. I’ll catch up with my thoughts to remember that he is happy and all the sadness and guilt I feel are completely selfish because I can’t add to his life right now. Maybe, later. I hope.

59746931_803068253409282_2241911501889732608_n18 years ago, when he got diagnosed we wondered if we would be able to handle it, if he would ever speak, if we would ever be able to communicate with him. We worried whether he would be able to do things for himself like tying shoe laces, eating, bathing. When he was five, we never would have imagined sitting down and having a conversation with him about what he wants, why he’s upset, how we can fix it.  We never thought he would handle school as well as he did, or socialise as well as he does. At 21 he still surprises us with his quick math, his photographic memory, his compassion, organisation and humour. That’s the Christos I want tell you about – my resilient, honest, brave, loyal cheeky and atypically typical brother.

So, I write this blog post instead of sending a card, I ask for pictures instead of Skyping and, every year, I try even harder to be better. I think of the years I was there and how I was a part of his smiles, his laughter, his crying, his bedtime rituals, his repetitiveness, his speech therapy, his tantrums, his education, his homework, his first steps, his first words, his transition, his moves, his development.  I dream of sharing the rest of my life with him, for our happily ever after, and want with all of my being for him to know that I will be there and that I am his sister.

Happy birthday Christos, I love you, thank you and respect you 💙

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21 and Atypical: You can’t spell autism without family

Celebrating parents and family in April – Autism Awareness Month – is a must. As well as being thrown into parenthood for the first time (or again), parents are thrown into the autism spectrum maze as well. They not only navigate parenthood but also autism and any other siblings. They are pushed into a minefield without any instruction and all the while knowing that every decision they make will change the lives of the family unit (and beyond).  They are the first example of strength we witness as siblings and their love, compassion and bravery mould us, push us, make us. I have collated a few of Stephanos’ and Christos’ family pearls of wisdom below:

Chriso (Stephanos mum):

“I can remember back in the days of nursery, just before the Ayia Napa primary school was to open the special unit for autism when I met Christos’ parents. We were introduced to each other and shown around the special unit so as to show us how it was going to be specialised and in the hope that they would be board. After that we kind of bonded and were in close contact for a lot of issues, not just autism, ranging from therapies, to school, to just life. During primary school and Apostolos Varnavas Stephanos has become connected to kids but Christos used to always save a swing seat for him and I think this camaraderie has stayed with them throughout the years. I always got the impression that the boys had full understanding of each other. They respected each others boundaries and would  not react or interrupt each other’s stimming behaviours.”

“When laughs it makes us all laugh with joy. It’s little things like when he finds cheese in the fridge and grabs a slice of bread and makes a mini sandwich, or when the electricity gets cut off and he goes to the electricity box and tries to switch up the MCB, or when his siblings play hide and seek or ball or generally doing things all together that reminds us that ultimately as long as he is happy we all are too. He is so full of love for his family, he sees one of us upset and he will approach and look at the tears or the face because he knows something is off. He will laugh at appropriate times of happiness, or if he sees his sister that is away studying or the others who come and go, he understands faces even though he wont always respond as per the social norms.”

15032849_10154114892521238_68260037536364233_n“Now they are 21. They go out into a society who has not prepared to welcome them. After this point and after our long journey, full of ups, downs , happy and sad we arrive at another hurdle. But, just like our boys we are always fighting, searching and promoting the awareness to all and especially to the parents who have just had a diagnosis and think their world has caved in. We stand by them because we made a decision to stand up and keep going for as long as we can. Crashing out is not an option because what is at risk is our boys. Autism has given us the opportunity to appreciate the smaller things in life which we would overlook in an already busy world.”
Chris (Stephanos sister):
“I am so amazed by his memory.  He remembers choreographies and song lyrics from years ago. So much so that we can dance to “I will survive” and he will remind me of the steps.”
When he sings Hakuna Matata “He hits the exact tone and also makes the background sounds of the music just with his mouth, he is unbelievable and sothumbnail_97F59141-AC3F-4BF6-9715-B348B40D813E talented. I can see that in general he likes music and especially Disney ones but I think it makes him feel more special that he gets to sing his favourite songs with me. Disney was definitely something we both enjoyed as kids so much and I think it was a way that we both could relate since we loved Disney and grew up with it until now. So I would say it’s more like a the first bond that made us become more closer as sister-brother relationship. I was listening to the Disney song ‘You’ll be in my heart’ from Tarzan few days ago and I instantly started being emotional when singing along cause all Disney songs just remind me of Steph and always will.”
“When he was younger he was a perfectionist he wouldn’t let me draw stuff the way I thought it was correct. He would just take his pen and do it his way on top. Sometimes he still does it now, but it was worse before when we were younger. I think Steph  is fine to do anything with me except drawing because he loves it that he wants to draw in his own way and that’s what makes him be so amazing at drawing.”
“It’s fascinating how autism can bring all people from different areas of the world together”.
Christiana (Christos’ mum):
After the diagnosis “…and while we thought we were alone in this battle, we met Chriso and Stephanos and that gave hope in our lives. We had a common cause and both families fought together. I remember the first time i saw Stephanos I was taken aback by his big bright eyes and his smile, and when i saw Chriso I saw an ally. She inspired me and gave me strength and still does to this day.”
884456_1403665136540932_166050827_o“Even though Christos is not social and doesn’t like too much interaction or hugging he is much more patient now than before. Even though isn’t friendly at first with people, with Stephanos it was always different. They never spoke to each other, they never went out or hung out, perhaps not even looked each other in the eyes once but always acknowledged and accepted each others presence. i really dont know how but in some way i am sure they have their own language. they both love music and walt disney characters. they are silent friends, and i am so happy when they are together.”
“Christos’ behaviour has changed and he has developed awareness which he did not have before. Christos is a loving boy, sensitive, and very well organised. He is perfect with directions, rarely being overwhelmed or getting lost. In fact, he helps us not to get lost, especially me when I am driving! He has eyes on the back of his head and you can never get away with anything he doesn’t approve of; like not washing your glass and not putting laundry for even one day. He has been travelling abroad from a very young age and has adapted perfectly to airports, trains, buses, queues etc.”
“Christos is an angel in our lives, he has brought us light, meaning and made us better human beings. We are so blessed to have him and our goal is to keep that smile on his face always because he is a happy child who soon will become a happy adult.”
Ajith (Christos dad):
“Their whole life starts from home; we are their first image of men and women, their example of people, family, lovers, parents, husbands and wives. Parents need to understand that once you become parents you become a role model, your family is you and even though it can be impossible at times to 16910928_10154942225380030_1134673750_omaintain the balance, keep it simple in your heart without looking at it as a duty but a happy and useful lesson in life.I want to conclude by saying that children with special needs, learning disabilities etc are my heart, I want to stress how important it is to make them feel equal, cuddle them and stop trying to adjust them to society’s unreal, outdated expectations.To all the families out there who are on this journey, repeating the first piece of advice I heard before starting this journey “Keep them happy”. It’s a way of life. My thoughts and prayers are with you every day.It is my life’s mission, along with the support surrounding us, to keep my son, and my family, happy to the best of my knowledge and ability.”
“I have learned and will learn so much from my son. Life for him is so simple and happy, in his own world, his own universe that we can only peek in once in a while. His demands are innocent and very genuine. He has his own routine, his own ways and his journey through learning, communicating, and compromising is simply beautiful. It is a blessing to live with him and see him grow.”
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21 and Atypical: 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: 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.