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Sibling Dance

The unusually hot UK summer has come to an end  on Christos’ last day in the UK – and he has just finished shopping in Oxford Street, London.

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The last week has been full of giggles and pleasant surprises. I am constantly amazed by how he has grown into a beautiful, mature adult with autism. And I am so grateful to our family for creating and sustaining this human who I can call my soulmate.

His basic schedule is simple – wake up, get dressed, eat, talk about when we will eat again, play his game boy, eat, talk about when he will snack, snack, talk about when he will eat again, talk about the schedule for the next day, talk about what we will eat the next day, eat, shower, tea, sleep. Anything out of this routine is discussed and it fits into the rest of the programme once agreed upon.

The fear of transport, restaurants and public spaces is not as big of an issue as it used to be. He will repeat what he wants to eat and drink and then he will patiently wait for the rest to finish. He adapts to change in plans and new environments like a pro. Like I said in my previous post it’s just the rest of us that stress out about all the above.

His maturity and adaptiveness is a credit to my mum, my dad and our grandparents. It is a credit to all our family how they love him, know him and praise him. The autism discourse used to focus only on the person on the spectrum, however it is their support system which moulds them and creates the adults that go off into society. We are seeing more and more studies and representation of parents and siblings of people on the autism spectrum and it would be naive not to include them in our journey to understanding autism.

Thing about soulmates is that we signed up to do this dance together even before we were born. If I had a choice now, 20 years later and knowing all the things I know, I would choose to spend all my lifetimes with him.

If you are into Netflix, Atypical Season 2 airs on Friday 07.09.2018. You can read my take on it here. If you’re in the UK, The A word delves deep into the family unit, together and individually. Each person is portrayed as a person. You can read my review here.

Tomorrow he travels back to Cyprus to resume the sleep, eat, repeat routine on home turf. Wish him a safe journey back and read something new about autism if you get a mo. I’ve gathered some articles below:

Schools ‘exclude autistic pupils through lack of understanding’

Bricks for autism: how LEGO-based therapy can help children

Autism: ‘If only I knew then what I know now’: Special school teacher Siobhan Barnett shares what working with autistic students has taught her about autism

Autism – five signs of autism spectrum disorder to look out for in children

‘Taboo’ autism seen as ‘disease’ in ethnic communities

How incy-wincy spider could show if your child is autistic

‘Autism and Learning Disability’ To Be A Priority in NHS England’s Upcoming 10 Year Plan

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Summer Love

This summer has been a tad amazing. Great weather, amazing friends, trips to remember, drama for weeks and a ton of lols. On the penultimate day of summer 2018 my 2018 summer secures a place in the Hall of Summers with a visit from my brother.

He arrived in the UK on Tuesday and will spend the next four days with me in Canterbury/London along with my mum and yiayia (grandma).

So far, their trip has been eventful to say the least.

Larnaca airport prides itself for being an airport for everyone. They have hosted days with people on the spectrum to experience the process of arrival, security checks, boarding and the aircraft. They have special paraphernalia to identify persons who require special assistance and priority service. In fact, ACI Europe awarded Larnaca International Airport with the first prize, among 500 other European airports from 45 states, in the category of “Most Accessible Airport for disabled persons and persons with reduced mobility.

Unfortunately, my family had to wait for an hour and a half while COBALT airlines found them three seats together – even though my brother had priority. This lead to them boarding the plane last. I assume that making a 20 year old autistic adult wait at check in for an hour and a half is not part of their accessibility offerings.

However, we recognise the efforts made by Hermes and we look forward to the smoothing out of such issues in the future.

We should also recognise that my brother flies quite often and therefore is familiar with airports. We are unable to fathom what would have happened if this was experienced by another person with autism.

Heathrow accessibility support on the other hand is incredible. They are prepared, organised, and trained to help. They act with professionalism and sympathy to people with hidden disabilities and the elderly. Due to Heathrow’s amazing partnerships with Autism West Midlands, the National Autistic Society and Autism Alliance they are ready, willing and able to assist travelers with cognitive disabilities and offer some comfort to their families.

40371016_479740792503127_4261342490960855040_nI must also mention Qatar’s accessibility support which we experienced in December while we were travelling back from Sri Lanka on our own. We were met at the aircraft door and we were accompanied to the door of our connecting flight. We were so comfortable that we didn’t even notice that we were there for 2 hours. This shouldn’t be a surprise since in 2007, the Qatar representative to the UN, Her Highness Sheikha Mozah bint Nasser Al Missned,  put forward a UN General Assembly resolution, to create World Autism Awareness Day. This gave way to a day dedicated to raising awareness about ASD across the world.

I hope that Larnaca and Cobalt will continue to learn and adapt, and one day follow the footsteps of these airports and become inclusive and sympathetic to people who require assistance.

He has adapted to the Underground, national rail and bus journeys better than I have after 10 years of living in the UK. I cannot put into words how proud I am of this boy, because he makes everything seem so easy. That’s the thing about autism – you have to know about it to know about it. And that’s why we are moved to tears when international airports, strangers and society make sure that our kids are looked after.

Of course even though my brother is cool AF, under the calmness of our tough exterior we are consumed by hurricanes because we know that the circumstances are not easy. That is why we worry ourselves sick whenever he is on the move, we don’t eat until he’s finished eating and we don’t sleep until he’s dreaming.

But, any autism family will tell you that stress, hunger and insomnia are a small price to pay for knowing your soulmate.

I will keep you updated on our Big Fat Cypriot Weekend which will be the perfect end to the perfect summer.

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The Hominidae Family

I read a book recently called Sapiens: A Brief History of Humankind – buy it immediately – and it changed. my. life. It made the world make a little bit of sense.

Yuval Noah Harari explains  how biology sets our limits and how culture shapes what happens within those bounds. He narrates humankind from the creation of the Homo genos to the ultimate dominance of the Sapiens species.

What is especially interesting is that we are a species of the genus Homo, which is the  genus of the family Hominidae (order Primates). Our characteristics include: large cranial capacity, limb structure adapted to a habitual erect posture and a bipedal gait, well-developed and fully opposable thumbs, hands capable of power and precision grips, and the ability to make standardized precision tools, using one tool to make another. For example, the biological family Felidae is a lineage of carnivorans colloquially referred to as cats. The species included in this family are panthers, cats, tigers etc.

So!

Sapiens (us) are a species of Hominidae together with the (allegendly) extinct species H. habilis, H. erectus, and H. heidelbergensis as well as the Neanderthals (H. neanderthalensis), the early form of Homo sapiens called Cro-Magnon, and the enigmatic H. naledi, which may be the oldest known member of the genus.

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In fact, Sapiens and Neanderthals, H. erectus etc are likely to have existed in the world at the same time. We evolved at the same time as them. Neanderthal anatomy differed from modern humans in that they had a more robust build and distinctive morphological features including shorter limb proportions, a wider, barrel-shaped rib cage, a reduced chin, sloping forehead, and a large nose.

In 2010  a study was published which determined that Neanderthal DNA is 99.7 percent identical to modern human DNA and researchers of the Neanderthal Genome Project found that 2.5 percent of an average non-African human’s genome is made up of Neanderthal DNA. Which means that at some point, our species interbred and that Caucasians are more likely to have Neanderthal DNA.

From this study and further genotyping undertaken, Dannemann and Kelso published  “The contribution of Neanderthals to phenotypic variation in modern humans,” Am J Hum Genet, 101:1-12, 2017. They narrowed the sample to include 112,338 individuals with white European ancestry (whose genomes contain Neanderthal DNA), and used these data to tease out which traits are influenced by Neanderthal genetic variants. The traits they identified included those that affect hair color, skin color, skin tanning and burning, sleeping patterns, mood, and tobacco use. For example, being a self-described night owl and being prone to daytime napping were both traits positively influenced by Neanderthal variants, as were loneliness, low mood, and smoking. Genetic loci associated with having red hair were found to be devoid of Neanderthal variants, suggesting red-headed Neanderthals were either rare or non-existent. The new study also supports Capra and colleagues’ previous observations that Neanderthal variants are associated with sun-induced skin lesions, mood disorders, and smoking.”

Next time you’re tempted to call someone a Neanderthal, you might want to take a look in the mirror.

What’s the point of this? Basically that we know nothing about who we are, what makes us. The only reason Sapiens went on to dominate the world was because of their unprecedented congnitive ability to imagine, and to believe in their imagination. They went on to imagine new ways to hunt, gather, cook. They imagined states, countries, borders. They imagined religion, human rights, corporations and money.

For millenia, our ancestors imagined things that control our lives, that give us the ability to research, understand and explain where we came from. Their imagination created the world you live in today.

And yet at the cognitive peak of our species, our generations are unable to create a world where we are all accepted because we can’t imagine people with disabilities living up to the culture and demands our society has conjured up.

At the core, we are simply a family that has different traits. If this is fact – why is it so hard to imagine?

In other science news:

Remember when we talked about the gut? Well, you may remember that the gut has always been under observation in autism study.

The Biology of Autism: Where Marilyn Le Breton explained that “When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. 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.”

Hope in Poo? In 2017, a study was published in the Microbiome Journal (here) 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.

Building on the research above, new findings now have reinforced the theory that some autism symptoms – including behavioral symptoms – can be manipulated with FMT. In fact, the results appear to be long-lasting, continuing to have an effect even years after the fecal transplant.

The researchers presented a follow-up to this study at the Beneficial Microbes Conference this month. According to the reports, the scores on a gastrointestinal-symptom scale remained over 60% better before the transplants through maintaining beneficial bacteria gained from the transplant.

This breakthrough could be groundbreaking for the autism community. If we can understand the causes/origins of autism we can work towards mitigating effects and implementing precautionary tests. This isn’t a cure but it’s hope.

Happy summer my humans!

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20

It’s May and I get to cry about my little brother turning 20.

31646765_10156283477410030_4157660885218754560_nI was in Cyprus 2 weeks ago and everywhere I went people talked about how good he is, how handsome, how they miss him and how much they love him. You might think that me writing this is what makes the difference but it’s not. It’s all of my family and how they raised him, how they treat him, how they flaunt him and how much they love him. He has become someone people want to know, and want to know more about.

I took over his room while I was visiting. He didn’t barge into his room to wake me up before 8am even though I could hear him being awake from 7am. He didn’t tell me to fold my clothes, or pick up stuff off the floor of his room, even though the rest of the house had to be spotless. When I couldn’t find the honey – he showed me where it was. When I wanted to drink one of his juices he kissed me and gently took the juice away. When I wanted to watch something, he let me even though it was his time to watch cartoons. When I wanted to watch a DVD he set a time for me and him to watch it together, even though he has this thing about not watching DVDs unless the stars align.  He let me bite off bits of his food even though Christos doesn’t share food. He let me pinch his cheeks and chin repeatedly despite his sensory overload.  When we said goodbye at the airport he hugged me for one second longer, because he knew I would ask for it anyway. He knows I’m a guest and he lets me be one. He has allowed me to float in and out of his life for 10 years.

10 years.

I asked mum if she thought he knew I was his sister or whether he thought I was some girl who showed up 10 days a year to annoy him. She said I was crazy.

But I have lived in a different country for half his life. Yes, there are many things I can say to myself to make it sound ok but right now I am just a girl in a foreign land waiting for him to have another birthday – from which I’ll be absent.

So, I write a blog post instead of a card, I ask mum for pictures instead of skyping and 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. And I want, with all of my being, for that to be enough and for him to know that I am his sister.

20 is the theme of May but I don’t know why and I don’t know how I’m gonna pull it off. Let’s figure it out together.

In other, less gloomy, news it was an eventful Autism Awareness Month this year. Here are some interesting reads in case you missed them:

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Bru-mance

On 4th January 2016 I relocated to Brussels on a 3 month secondment. In those 3 months I made lifelong friends, we had lols for days, hangovers, a detox diet, so much pizza, I gained 10 kilos, launched an autism awareness project, took LPC exams and witnessed a terrorist attack.

I fell in love with Brussels because it’s such a weird place. You can find anything you want but it is organised chaos. You only have to walk around for 20 minutes and you are bound to go through european, residential, touristy, historic parts of the city. It’s a small town playing dress up as a big city.

On 22nd March 2016 I went to work super early because there was a lot going on. It wasn’t until 9am that I sat down, switched on my PC and looked at my phone which kept getting messaged and missed calls that a colleague said to me – there’s been an explosion at the airport. We knew a group of people from our institution that were travelling that day so we immediately began trying to contact them. It wasn’t until the second explosion hit the news that I stopped and thought that this was something I should worry about. We had colleagues stuck on trains and being diverted, colleagues trying to come back and others trying to leave because they had to get to their children. Our building was in lock down and we had to do inventory to figure out if we would be okay to stay the night. When we were finally allowed to leave, we walked through the city to our neighbourhood, it was such a sunny day. Three days of mourning followed.

I wasn’t scared that day. I couldn’t be scared because we were burdened with so much responsibility. In the weeks that followed, we retold the day’s events so many times and I always remember not being scared. I credit this to that one colleague who was my rock that day, and who stayed late with me when I offered to walk people home. I was scared that afternoon when I had to go buy enough supplies to get me through the next few days. I was scared when I locked the door to my flat and I was alone. For the next few days, every time I heard a police siren I checked the news. Two days after the attack a friend called to say there’s a march and we should go.

The Bourse was overflowing with people, flowers, candles, song, laughter and life.

I love Brussels because there’s surprise at every corner; you never know if the car will stop at the zebra crossing, or what kind of amazing cuisine you’ll uncover during a stroll.   love Brussels because their landmark is a small bronze sculpture of a naked boy urinating.

I love Brussels because it was were I started my autism awareness project for Christos’ 18 birthday (#Project324). It was from there that I asked the team if they wanted to be part of the project, it was there that the cards were printed, cut and mailed to 18 countries. I am so proud that my brother’s 18th birthday project is associated with the city of Brussels.

In a short 3 months, I loved, I lived, I drank, I ate, I campaigned, I advocated, I worked, I helped, I was scared, I was angry, I lolled, I studied, I cried, I learned, I got a pink elephant hat. Most importantly, I was inspired. On this day, two years ago 32 people died, hundreds were injured and millions were inspired. Millions around the world were inspired by the fearlessness of humans.

#jesuisbruxelles

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The Sri Lanka Diaries: Proud Pereras

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Being back to life without Christos is harder than I thought.  The first couple of nights I kept waking up at 4.30 looking for him. This holiday was different because we depended on each other. Whatever he needed, I was the one he would come to. No back ups, no saying ‘yeah later’ and then never getting round to it. It was a surreal glimpse into our future.

I’ve written about the challenging parts of the holiday, now it’s time to go back to gushing over how great he is.

1. His routine: Christos works out his day in hours. So in the evenings, we would set out a plan for the next day hour by hour. For example:

  • 7.30 tea
  • 8am walk
  • 9am toast with jam and cheese (maybe chicken sausages)
  • 10am tennis/badminton
  • 11am go to the pool
  • 12.30pm shower
  • 1pm lunch (pasta with chicken or rice and curry)
  • 2pm game boy/or laptop (Shrek or The Road to El Dorado)
  • 3pm pool
  • 4.30pm shower
  • 5.20pm listen to music
  • 6pm tea/chocolate/fruit
  • 7pm listen to music
  • 8pm dinner (pasta with chicken or rice and curry)
  • 9pm bedtime

This wasn’t as rigid as it looks. For example, I could negotiate an extra half hour at the pool if he was in a good mood. Or we would skip the walk or the pool if it was raining. The night of the christmas gala dinner we stayed at the restaurant until 10.30pm! Also, if we were travelling the schedule looked different. He even let me explain to him how there are different times in different countries.

IMAGINE, trying to explain time zones to someone with onlyimg_8364 numbers and the words – dad, mum, Christos + Theodora, airplane, and (obviously) pasta.  I showed him the time in Colombo (dad), Doha (Christos + Theodora), Cyprus (mum) and explained that the airplane would take off and land in between. I wasn’t sure he got it, until we got to Doha and he asked me to change the time on my phone to the local time and did the same in Cyprus. I CAN’T EVEN.

 

2. His food: I’ve talked extensively about his eating habits on the blog and how far he has come from the days when mum had to pack a bunsen burner to take to the Maldives. He ate all sorts of chicken, and all sorts of rice and all sorts of pasta and sauces. He had a variety of options and made his mind up quite quickly. It didn’t bother him that it wasn’t always the same rice, and he never went for white. It didn’t bother him that the chicken was curry, or jamaican, or spicy, or salty, or lemony. He ate what was there, what caught his eye and was willing to switch in between. The chefs were on standby to make him something special, but we never needed to. In fact, all the staff were at his beck and call. I am so grateful to all the great people at Amaya Lake for their kindness; I wrote a review for them here.

3. Packing: He is the best at packing. I’m okay at packing – dad is not great (sorry daddy). Every time I lost something, Christos knew where it was. Every time I was packing he would bring me things I would have DEFINITELY forgotten. He is in his element – bossing us around and organising. Thanks to him, we went back home with all the things we had taken with us.

4. Compassion: While in Sri Lanka my aunty had a bad fall and had to be operated on. When we got to the house it was 5-6pm and Christos had warned me that he wanted chicken nuggets that night for dinner at 8pm. But: Which ones? Breadcrumbs or batter? Smooth or bitty? SPICY OR REGULAR? Or maybe a little img_8415bit spicy? Point is, it wouldn’t be the chicken nuggets he’s thinking of. I obviously always say okay and figure out the rest later. When we got there, it was obvious that we needed to make sure our aunty was okay first. Dad was mega stressed and there were millions of things he had to sort out and think about. Nuggets were not a priority. Christos played with his game boy from 5pm to 8pm that day. Why? Because he knew something was off. He knew the schedule was off. He didn’t ask to listen to music, or anything. He just played his game boy and stayed out of our way. We had pasta that night for dinner and it was okay. That was our proudest moment of the whole trip.

5: Affection: He was constantly holding my hand, giving me kisses, looking out for me. When I had a tummy ache, when I had a headache, when I was stressed – he was there for me. It was hard going back to Cyprus because his priorities changed. He was home. That meant he had our mum and nan who take care of him every day, all day. He didn’t need me anymore. Kisses were rushed, and cuddles were cut back to only when necessary. It really, really hurt. But! Let’s be real, he sees me 10 days a year. At the end of the day, I was only there for him for 13 days so obviously I’m not number one. I’m probably top 5. I hope I’m top 5.

This holiday meant so much to the three of us. There’s so much I’d like to tell you, but I can’t express it in words. This holiday was a feeling. When I think back to those 13 days, I feel a weight on my chest, it makes me cry, it makes me grin ear to ear and it makes me proud.

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The Sri Lanka Diaries: 13 years later

13 years ago on 26th December 2004 we were just two kids holidaying with our parents in Sri Lanka.

13 years ago, while I was clutching onto Christos and waiting for the second tsunami wave to hit, I thought of all the things I might not be able to do. I wondered if my family knew I loved them. If we would be found. I thought of what I wanted to do, and how I would do it.

13 years later, unavoidable circumstances have led to Christos and I being on holiday in Sri Lanka alone for three days. We aren’t slumming it in the slightest. We are still staying in Amaya Lake, got a suite and all the staff doing their best to provide us will all the support we need.

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It’s not the first time we’ve been alone together. I used to be in charge when our parents were at work for 3-4 hours. But we were at home. I knew who to call; I knew what needed to be done in case of an emergency; our parents worked 15 minutes away and our grandparents lived 30 minutes away. For the last three days we have been a 3 hour drive away from dad and 5,644km away from any kind of family. No back up. And when I say no back up, I mean no back up that can take over from me with Christos. I’m the only one who knows how to make his food, what he says, what he drinks, his schedule, his expressions, his mood, how he likes his clothes, socks, showers. I’m the only one he can depend on for 3 days. I haven’t found a word that describes what it feels like yet.

In 2004 Christos was 6. He had not started speaking yet and we communicated with PECS. We had a bag packed with only his food. There was his gluten free pasta, halloumi, lemons, rice, a burner and his salt and vinegar Lays crisps. Remember, this was 2004, in a village in a third world country in the midst of a civil war. No smartphones, no internet, no roaming, no YouTube, no Lays.

Despite my stomach ache, insomnia and the permanent look of panic on my face, the three days have been a breeze. It may not sound like a long time and you might be thinking that I’m being a martyr. I assure you, I tell myself to (wo)man up constantly. We have been following a schedule for the last 11 days, and we have not deviated from it much, unless necessary. My only job is to make sure we stay on schedule.

And that nothing happens to me.

Or him. But mostly to make sure we are on schedule.

The boy who couldn’t speak or understand why we were rushing him out of the house and disrupting his schedule has been replaced by a giant who follows instructions, communicates clearly with me about what he wants and understands that he needs to behave for me. We even went to a gala dinner together! He has enchanted the staff and the other guests. He is aware that I am alone and that I need to be taken care of as well. I know he knows because I occasionally get a kiss I don’t ask for or he looks back and holds my hand. My baby brother has grown into a beautiful human and that is all I want for Christmas for the rest of my life.

Some of the difficulties we have faced these last three days include:

– Having to check the time constantly to make sure we are on time. He does this on my phone approximately every 5/7 minutes.

– Always taking the same route to the same places. I tried to vary our walks slightly and had to deal with a tantrum because of it. He adapted quickly after a stern talking to and threats to call mum.

– Constant reassurance that we are keeping to schedule. He repeats the schedule to me constantly and I have to confirm it every time, with a smile and a kiss. Even as i write this he is telling me that he will be listening to music at 17.20 at volume 50.

– Brushing teeth. I have to count to 60 so that he brushes his teeth properly.

– Exercise. I’ve only been able to convince him to take a walk with me once in the 3 days we have been here. But at least we did it!

– Stimming and echolalia in a crowded restaurant. His arm flapping and laughter or repetition turns heads but everyone has been very helpful and understanding so far.

– The volume. Of the TV, the laptop, the game boy, his voice. It’s a constant negotiation of numbers and compromise. I am amazed at how willing he is to cooperate.

On this day, 13 years later, I am content that my family knows I adore them. I am assured

img_8423-2 that whatever happens I have people in my life that will always find me. I set goals and I have accomplished most. I’ve done most of what I wanted to do and I have plans for the things I haven’t been able to do yet.

Yesterday was all about self-indulgence, presents and personal happiness. Today is about remembering and honouring the 220,000 who didn’t get the chance to do what they wanted by living out our own lives to the fullest.

No doubt our visit to Sri Lanka has been impactful. Everyone in our vicinity has been touched by autism. Everyone has learned something new. I hope this means that the next autism family to visit Amaya Lake will be in for a treat!

Be kind. Share the love.

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