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Happy Birthday – 2020 Edition

Dear brother

You turn 22 years old tomorrow and this year you are celebrating in the midst of a pandemic. Another memorable celebration with all your loved ones awaits tomorrow; a Mickey mouse cake, your favourite food, and all the things you told mum you wanted for your birthday weeks ago. What an amazing life you have lived so far and how many experiences you have grown through.

You mesmerise me with your brain, your intelligence and how you keep surprising us all every day. Like how you know dad hides the laundry you ask him to wash every day and you have to remind him to take it out of hiding when he’s packing your things, or how you take care of mum when she needs it the most. People might think we can outsmart you but, damn boy, you put us all to shame with your perception and keep us on our toes.

You make me laugh out loud when you say you don’t want to go for a walk because you’re cold, but its 30 degrees outside and you’re sat in an air-conditioned room. Or when you start laughing just to turn our frowns upside down. You keep our family sane and safe, reminding them to wash up, bring in the clothes when it starts to rain, drink their tea before it gets cold and making them all smile with your wit. Thank you for taking care of them.

I live off the seconds I get to see you on video chat to hear you shouting at me to hang up the phone. That’s all I get and that’s okay. I am so proud of you and I can’t wait to see you again, grab your chin and force you to kiss me 10 times.

Happy birthday my little brother, I more than love you, more than miss you.

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FYI: If you want to help our cause during the Covid-19 pandemic, I am selling off my paintings to raise money for SMILE School in Famagusta, Cyprus. SMILE, like all schools, has been closed due to Covid-19 and our boys are being home-schooled, it’s easier for some more than others. It’s distressing for us to stay at home, but even more when you rely on that sense of routine and repetition to get through the day. When parents have to divide their time to further the education of all their children, neurotypical or not, as well as keeping the peace, maintaining the household etc. Your donation can help with getting supplies to educate our boys in art, math, cooking, baking, to entertain them with music, films etc or to help with paying rent or utilities so that the boys have somewhere to return to when all this is over.
Read more about SMILE on the blog and pick a painting you like. Make us an offer! These are difficult times, so I won’t price them. It’s up to you to bid and, once confirmed, donate directly to the school. 

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Stories that defy lockdown

It’s nearly the end of Week 4 on lockdown and I’m finding it helpful to read other people’s experiences. It kind of normalises the situation a bit, knowing that others think what I think and finding inspiration in [extra]ordinary humans.

If you are feeling it this week, here are some inspirational stories I found that may brighten your day, give you a different perspective or inspire you to help others.

Autism champion shares his tips for young people coping with coronavirus lockdown: “One of the symptoms of autism is that you don’t like change in your routine,” he said. It’s a massive culture change for somebody with autism, its like my life has gone on pause. But Richie wants to help other children and young people with autism who may be struggling too.”

How to help your autistic child cope with coronavirus lockdown

Autism assistance dogs trained in Banbury are a vital lifeline to families during coronavirus lockdown: “Dogs for Good provide these amazing and highly-trained animals to 50 families who have children with autism and many people with a disability or illness. And the charity is doing its best to support those who need them despite the significant challenges of the last few weeks.”

How to support autistic children and adults during coronavirus pandemic

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 – and it hosts my brother. 

So, read more about SMILE on the blog and pick a painting you like – info below. Make us an offer! These are difficult times, so I won’t price them. It’s up to you to bid and, once confirmed, donate directly to the school http://www.autismsupportfamagusta.com/.

I will post the painting to you on the weekend after you order it.

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Acrylic on canvas, 35x28cm because I love elephants and Christos loves the sea.

 

 

 

 

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Deer – acrylic on canvas – 51.40.5 cm

I love blue. Maybe this is why?

 

 

 

 

 

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Regal – Acrylic on canvas – 50×39.5cm

A clear blue sky here featuring a beautiful woman, a powerful pose and a regal bird.

 

 

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In progress – Acrylic on canvas 65×89.5cm

This is my interpretation of Kilmt’s Expectation. Klimt has been my surrealist guide and I draw inspiration from his love for women and nature. Here, instead of expectation, she strikes another power pose and opens herself up.

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Art in the time of COVID

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 – and it hosts my brother.  

In 2015 Autism Support Famagusta I wrote: “Their dream is to build a home within the community to provide care and a quality of life for people with Autism. The long-term goal is a specialised centre which will offer kids with Autism tailored education and pastime.” And now here we are. The Smile centre opened in September 2019 and currently hosts 3 adults, with interest from even more families.

But now SMILE, like all schools, has been closed due to Covid-19 and our boys are being home-schooled, it’s easier for some more than others. It’s distressing for us to stay at home, but even more when you rely on that sense of routine and repetition to get through the day. When parents have to divide their time to further the education of all their children, neurotypical or not, as well as keeping the peace, maintaining the household etc. Your donation can buy toys, art supplies, puzzles to continue their education or to help with paying rent or utilities so that the boys have somewhere to return to when all this is over.

So, read more about SMILE on the blog and pick a painting you like – info below. Make us an offer! These are difficult times, so I won’t price them. It’s up to you to bid and, once confirmed, donate directly to the school http://www.autismsupportfamagusta.com/donate . I will post the painting to you on the weekend after you order it.

img_5785

Acrylic on canvas, 35x28cm because I love elephants and Christos loves the sea.

 

 

 

 

img_5786

 

 

Deer – acrylic on canvas – 51.40.5 cm

I love blue. Maybe this is why?

 

 

 

 

 

img_5784

 

Life – Acrylic on canvas – 50×39.5cm

Blue again and women. Strong, powerful, shapely, pregnant, tall, short, beautiful women.

 

 

img_5787

 

Regal – Acrylic on canvas – 50×39.5cm

A clear blue sky here featuring a beautiful woman, a powerful pose and a regal bird.

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Hiding – Acrylic on canvas – 60×40.5cm

Another power pose by a magnificent woman. There is so much more than meets the eye.

 

 

 

img_5797

 

In progress – Acrylic on canvas 65×89.5cm

This is my interpretation of Kilmt’s Expectation. Klimt has been my surrealist guide and I draw inspiration from his love for women and nature. Here, instead of expectation, she strikes another power pose and opens herself up.

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Covid Coping

Aren’t you distressed by this lockdown?

Imagine the distress of people who find comfort in routine, people who need the security of repetition. Eating the same meal, going to the same shop, drinking the same brand of juice or going to school. We have had a schedule in our home since Christos started using PECS – details here. I talk about it extensively and often because it is central to keeping him calm and happy. The enormous amounts of work parents put into developing their kids communication skills either with PECS or otherwise and teaching everyone to use it is inconceivable – you can read about it on this blog or visit the web pages for autism organisations who share stories. (You can’t spell autism without family)

An autism family spends most of their lives educating at home because even though they may go to school and do homework, they can only get to the point of going to school and doing homework if the family has paved the way. They can only continue to grow, if the family keeps putting down those blue bricks and creating paths for them to take. You don’t understand the time and effort needed  our children’s education and every day life. The determination of family and the incredible teachers who contributed to Christos’ education created this 22 year old man who reads, writes, tells time, does math in his head, teaches himself (and us) to use technology and loves (with a bit of encouragement from us) learning new things (if it’s on the daily schedule).

Imagine the distress of those parents who have to home-school children who would otherwise be taught in a special unit or by a speech therapist. Think of parents who have both neurotypical and neurodiverse kids, who aren’t working at the moment, who can’t afford new toys or resources to occupy or educate their own for another 3 weeks. Parent’s who have to reiterate different schedules to persons with autism who don’t understand this sudden unexpected change and disruption to everyday life. By the way, if you or someone you know if having a hard time, there is a lot of information on coronavirus and resources that may help here

Even though we are all isolating, it is important to remember that some people are more at risk of not surviving social isolation or not recovering from it. Now, more than ever we need to think of others and, while staying home, find safe ways to help others who may be struggling more than you. There are so many ways to be kind – calling, texting, delivering supplies, donating to your local charity, giving away toys or books you won’t use etc.

My plan is to raise money by selling paintings I have painted over the last few years. I am raising money for the SMILE project which operates in Famagusta, Cyprus because “the Cypriot government, while responsible in making education accessible and available for all, has failed to …provide establishments which can cater to adults with autism living in the Cypriot society. Hence, it is left to autism societies, organisations and groups to create their own places of education and development of character.”

But what happens to areas where such an organisation doesn’t exist? Or it doesn’t have the funds? What happens when these schools close because of Covid-19 but some parents, who aren’t working due to the pandemic, still have to pay utilities and rent to keep the school.

“Every person involved in the SMILE project was once just like you. None of us knew autism until it burst into our lives. But we started learning, growing, getting stronger and stumbling the whole way here – to this moment when action was needed yet again. So here we are, getting back up and marching forward, hoping that you will be a helping hand (or smile) by our side” – Smiling September

“SMILE was created with determination to establish a safe, educational space for our kids where the state has failed. It is [operating]…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” – 21 and Atypical: The SMILE Project

So, pick a painting you like and make us an offer. These are difficult times, so it’s up to you to make a choice and donate directly to the school http://www.autismsupportfamagusta.com/donate . I will post the painting to you on the weekend after you order it.

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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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Colour in darkness

There’s 3 things happening this week – Autism awareness week/day and month.

Possibly the most peculiar Autism Awareness Week/Month since their establishment but also the most unifying. We are all facing the same restrictions, the same stigma, the same fears and hopes. We deal and are affected in varying degrees and we are reminded that in times of darkness the world becomes just a little bit kinder.

Along with everything else this pandemic has shed light on, it has shown us how we all require a different approach/treatment. The kiddies need to stay home and still be educated, teens need to study at home and get used to online socialising, workers need to work from home or find ways to keep their cashflow, and the older generation needs to be protected, valued and provided for. In all these categories we have the people with underlying health conditions, mental health concerns, pregnant, disabilities, unemployed, homeless, ease of access to healthcare, childcare and autism.

This pandemic treats us all equally. Money, social status, friends, and being “normal” means nothing. We are faced with the reality of our own mortality and what that means individually for us. We are starting to open up and become aware of ourselves, appreciate what we have, respect others and give help where possible.

For this autism awareness month I want this to be a place where we can learn more, read about and become aware. We will expand our horizons, open up our worlds and come through this pandemic bigger, better, more inclusive, loving and respectful. I’ll find, share and maybe use some of my own stories to show you this pandemic from an autism point of view. And to counteract the bad, I will be offering up some of my paintings for sale, to raise funds for the SMILE school for autistic adults in Cyprus.

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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 ❤