0

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.

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_5787

 

Regal – Acrylic on canvas – 50×39.5cm

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

 

 

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.

0

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.

img_5790

 

 

 

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.

0

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.

0

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

1

Fading into the background

A new study published here – Distinct Patterns of Neural Habituation and Generalization in Children and Adolescents With Autism With Low and High Sensory Overresponsivity – on pubmed.com explores how the brain can fade repetitive or familiar sounds in order to allow concentration in neurotypical persons and compares the workings of the same function in neurodiverse individuals.

For most of us, sensory stimuli such as noises or unusual textures trigger activity in the part of our brain which processes sensory information. The more we are exposed to this stimuli, the more our brain is able to recognise it as familiar and tamp or manage our response to it. This process, called habituation. It helps us tune out background noise/sensations so that we can pay attention and process new information. Let’s take a fan as an example – you hear it when it’s turned on at the start of the day, you feel it every time it turns towards you, but you don’t keep hearing that buzz or noticing the gust every second throughout the day, unless you choose to.

The article’s objective is to explore sensory overresponsivity (SOR), which is an atypical negative reaction to sensory stimuli prevalent in autism spectrum disorder. The study monitored responses in three stages of sensory processing:  initial response, habituation (i.e., change in response over time), and generalisation of response to new but familiar stimuli.

The new study, by lead investigator Shulamite Green  (assistant clinical professor of psychiatry and biobehavioral sciences at the University of California, Los Angeles), found that some autistic children don’t show signs of habituation. This means that their brain does not fade out the sound of a fan, the gust of wind, a stray hair that tickles their neck but their brain keeps trying to understand the stimuli over and over again – which is overwhelming and exhausting.

You can read the very interesting findings at length through the link above. The summary is:

  • The team studied brain responses to sensory stimuli in 42 children with autism and 27 non-autistic children, ages 8 to 18 years, who have average or above-average intelligence.
  • The autistic children into two groups: highly responsive to touch and sound and those less responsive. 
  • Each child’s brain was scanned while it experienced a series of stimuli, each lasting 15 seconds: white noise, a scratchy sponge rubbed along the left arm, and then both at once. The sequence looped six times.
  • The team monitored the regions of the brain which process sound and touch, and the amygdala, which filter sensory information.
  • During the first two rounds of repetition, all children showed increased brain activity. The group with the less responsive children had a noticeable brain activity drop during the third and fourth rounds and remained low for the fifth and sixth.
  • The brain activity of autistic children with high sensory reactivity veered towards high for all six repetition rounds.

The team also exposed the children to one more round of stimuli using similar sensations but with a slight difference in texture and frequency. The brain activity for the group with the low sensory reactivity indicated that they recognised the stimuli as new but also that they were similar enough to tune them out. Whereas, the other group had high brain activity which may indicate that their brains were processing the stimuli as completely separate and new. It was also interesting to read that some children with autism showed no brain response to the new stimuli at all. This may mean that they could not tell that the stimuli were new, or that their brains had faded the response to the original stimuli so much that they couldn’t activate in response to the new information.

Next time you see a child covering their ears, a parent frantically trying to to put their sock back on, a crying toddler in a busy train/bus/airplane – remember that what you see is never the whole story. Our bodies and minds are vast and beautiful and different. Instead of getting annoyed let your brain fade it out so you can focus on something else – because you have that ability and they may not. Your brain’s natural reaction will be to habituate not to stare or glare or offer unnecessary parenting advice – so pop your headphones in, look out the window or engage in another conversation instead of focusing on the distraction – because you have a choice, people with autism may not.

If you would like a taster of what sensory overload can be like Autism Speaks has 5 video simulations that help you experience sensory overload.

Don’t let kindness, understanding and love fade into the background. See it, appreciate it, teach it and use your capabilities for good.

42748877_724721124557754_6401491820877971456_n

0

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.

dav

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?

0

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.

52706495_1060179607500525_7996518915129737216_n

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?