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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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The Sri Lanka Diaries

Christos, Dad and I are in Sri Lanka for 10 days. Note that this is the first time Christos has travelled without my mum. The prospect of travelling with an autistic adult who towers over both his father and sister was daunting. However, the only restless Pereras were the neurotypical ones. Christos cruised through the airport security, the airplane, the food, the transit and the overnight flight.

He adjusted to life in Sri Lanka just like a true traveller. All he asks is what the schedule is for the day. At our number one hotel we had a suite, a pool and 3 buffets. The staff were curious about Christos and keen to help in any way possible. By day two, everyone knew who he was. They knew what breakfast he liked and what ice cream he preferred. They even learned that ‘Efharisto’ means ‘thank you’ in Greek. Christos has no reservations when it comes to being in Amaya Lake. Even though it’s been 7 years since he last visited, he remembers it as if he has been there this whole time. His memory is impeccable.

The way of life, the culture is the first thing you notice when you get off the plane. Everyone is smiling, everyone wants to talk, help, and everyone stares. I can speak for Cypriots and Brits when I say that staring is not ‘polite’ and not encouraged. However, here it’s unavoidable. Staring here is not malicious because if you have an issue with someone you will sort it out immediately. Staring is education. It’s a revelation how little it bothers us here in comparison to Europe. The chasm between these two continents is evident in its people.

We talk about how lucky we are with Christo every day. There are families that can’t even dream about a vacation with autism. Yet, here we are. Talking to people who don’t know the word and explaining to them what this spectrum is all about. We are literally walking, talking, breathing awareness. Just by walking in a room Christos captures their attention, he evokes questions and he bestows new knowledge. This information will be talked about with friends, with family, and it will change someone’s life; maybe not here, maybe not now but one day.

I’ll go into the details of this adventure in later posts. For now, let me just remind you to respect and understand each other. We are only here for a limited time, and in that time we can make wonders happen. Remember that you may be the missing piece to a puzzle we all want solved.

Happy Holidays from the Pereras.

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The A word – Acting

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Episode 1 of Season 2 introduced us to Mark. He is cast as the son of one of the mums in the autism support group that Joe’s parents attend. He holds his plate and tea and stands in the background while mum has a conversation. You can’t miss him, even in the background, his TV mum jokingly mentions that he’s 6ft3. He doesn’t sit until his mum asks him to sit down and tells him exactly what they will do; he will sit and have his tea while mum has a conversation and then they will get on the bus and go home. He repeats this back to her.

For a lot of people this interaction will mean nothing. For me, this interaction is why I will be watching The A word again tonight. That moment is our entire life with Christos. Telling him what the plan is, every hour is accounted for. It started with pictures (Picture Exchange Communication System) on a board, then printed out schedules on the fridge, and finally it became a conversation. I remember my mum putting together this schedule for him every night; at 6.30am we wake up, at 6.40 you brush your teeth, at 6.45 we get dressed, at 7.00 we drink tea and at 7.15 we get in the car to go to school.

image (17)We used to have the whole week planned out and changing the plan was a nightmare. As his speech therapy progressed we put pictures and words together and formed sentences which he had to say before he got what he wanted. I found some examples which you can see in this picture. Once he familiarised himself with all the pictures and the sounds, he didn’t need them anymore. He could form sentences all by himself and name anything in the house. Now he has a weekly plan. He knows months off by heart and has a sense of how far away or close they are. So, for example, when I will visit again, or when he’s going to start going to the beach, which days he stays with my mum or dad and which days he goes to my grandparents etc.
Travis Smith, who portrays Mark, is an actor with autism and this episode was his acting debut. Travis is working at ABLE Radio through an initiative which aims to boost the employment prospects of 1000 young people with a learning disability and/or autism. Engage to Change. He secured the ABLE Radio placement which has been helping him develop his skills, and is working towards realising his dream of acting and singing for a living. “There is nothing else that matters when I am acting,” Travis says. “Just before I do it, I am petrified but, once I am singing or acting, I lose myself.”
Joe is not the kind of autism I grew up with, but Mark is. A gentle giant that is shy and loves a plan. I feel that we will be seeing more of Mark as the show goes on, and I hope that we will see many more representations of autism. When you watch tonight’s episode of The A Word (BBC One at 9pm GMT) look at the details, don’t just listen to the words. Notice the hidden looks, the things parents do that look like routine to them but aren’t routine for you. Look out for Mark and you might see a bit of Christos in him too. It is breathtaking to get to witness a young adult with autism do what he loves. It is inspiring to watch Travis break free from the stereotypes of what people on the spectrum can and cannot do.

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Christos’ dental journey

I recently got a message from Christos’ dentist, Ioanna, to tell me about his most recent visit and the progress he has made. I also wrote about one of his visits in 2015 – Back to the Dentist. I asked Ioanna if she would be willing to contribute to this blog and here is the result.

My first encounter with autism was 15 years ago when Christos was referred to me by his family dentist. He was the first child on the autism spectrum I had in my private practice as a young pediatric dentist. I knew nothing – as I realised later – about autism, but Christos inspired me to get involved and learn as much as I could.

And that’s how I was introduced to the world of autism. I am so lucky to have had the best guides! Unique Christos and his special family!

He was only 4 1/2 years old when I met him. His dental problems, the behavioral restrictions due to his young age and the difficulties due to autism made it easy to choose a full dental treatment under general anesthesia. The first goal was achieved. Our next goals – and most difficult ones! – were helping Christos brush and have good oral health as well as gaining his trust and cooperation for the frequent dental visits over the upcoming years.


Dental treatment doesn’t differentiate between people on the autism spectrum and other patients. Rather we have to be aware of behaviour management and accommodate the needs of the patient. This is a real challenge! Sensory disorders make it even more difficult. What I’ve learned, in the last 15 years, is that I have to be armed with patience, understanding, persistence, flexibility, creativity and love when I work with people on the autism spectrum…and with people in general!

In the beginning, I used to see Christos every 2-3 months. This was to help him become familiar with the dental office and, of course, with myself. I could see how hard it was for him to adjust and take in all those new things; smells, lights, doors, drawers!!!!  I must admit, it was hard for me too. I had to interpret his behaviour and the only reason I managed to do it was because of the great help of his parents. I felt them to be some kind of translation between me and my patient!

It took Christos 3 visits to finally sit on the dental chair and open his mouth. I tried to teach him and his parents how to brush. His mum and dad were so brave to fight that battle at home! (I think Dora described it once in one of her articles – Thinking about the things you don’t think about: b) Attack of the Toothbrush). You can see why brushing can be a real struggle for people on the autism spectrum! After that we managed to put some fluoride varnish – that’s one with the strange taste! – on his teeth! 2 1/2 years later we managed to do the fissure sealants on his newly erupted first permanent teeth! That meant that he would have to sit for a significantly longer period of time with his mouth open, tasting too many strange things with odd tastes and feeling all the weird textures. But we made it!

A moment I won’t forget is when I got a phone call from Christos’ dad one weekend. He was so happy and proud that Christos said my name while showing his moving tooth!!! This was Christos’ way of explaining that something was going on with his tooth and it was his dentist’s job to take care of it. It was another milestone in his personal progress and I was so excited and happy for him!

Another memory I have is of how anxious I was when we decided to extract two teeth to make space for the new ones. We needed to make sure the teeth settled and were arranged well as it wouldn’t be possible for Christos to have braces. I had to give him local anesthesia with an injection. However, once again Christos surprised me. He acted like it wasn’t a big deal at all! His parents and I were so relieved and so proud of him!

Step by step, Christos knew he had to accept and follow my rules; but I also had to follow his! I couldn’t break some of his routines. I had to accept and try to understand many strange (to me) behaviors and obsessiveness, especially at the start. For example, he wanted to drink water immediately after the fluoride application and throw the plastic cup in the dustbin. During every appointment I would try to convince him not to do that and …guess what? We made it last time!!! After 15 years!!! What did Christos teach me? Never give up on my goals! Keep trying!

His last visit also came with some very interesting parts. Christos took on the role of a role model for another special boy! The boy who had the appointment before Christos came back into the room when he saw him entering my office. I asked for Christos’ permission first but he didn’t look bothered by this other new person in the room. From Christos, this is a permission! If he didn’t want someone there, he would make it very clear! At the end of our appointment, I asked Christos’ mum if we could take a photo to send it to his sister with his progress. To my surprise, she had already done it!!! Not only that, but after the appointment I also got a warm sms from Christos’ dad! The people around him are so sharing, so loving and so alert.


A couple of years ago, I was part of an internet conversation with colleagues from other parts of the world to share useful experiences and knowledge about autism and dental treatment. I got a message from one of them saying “You don’t want autistic patients!” His words shocked me. I thought about my long journey and realised how valuable it was for my career, my personality, my view about people and life to meet Christos.

One of the interesting parts of my job – and it’s one of them that I love! – is that I can follow the changes in the life of my young patients and their families. It’s amazing! I had the chance to see Christos growing, starting to talk, improving his communication skills, being happy after his trips to meet his sister, being a teenager with a big change in his behaviour and becoming an adult. His family shared some of their worries, some of their endless efforts to give support to their hero, some of their philosophy about life with me.

Christos gave me the first piece of the autism puzzle and it is a precious one! I want to really thank him for it!

Thank you Ioanna for your words. But mostly, thank you for your patience, kindness and love over the time my family has known you. I can only say that I hope you are a role model to your colleagues in the same way that you are an inspiration to those around you.

PS: The green thing Christo is holding in the photo is a mirror so he can watch exactly what Ioanna is doing. Did someone say control-freak? 

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Atypical:

Just binge-watched the much anticipated Netflix Original series ‘Atypical‘. The series follows Sam, who is on the Autism Spectrum, on his journey to finding love.

Even though its sold as a comedy, the show made me ugly-cry a lot more than it made me laugh out loud. The show presented many big and small moments that I have experienced first hand. The autistic lead is sincere and very well portrayed. You can see the extensive research that went into developing the ‘Sam’ character and he delivers quite well, in my opinion. Obviously, not everyone on the spectrum is like Sam, but I think this series is more about the family rather than the lead.

I can’t think of anything I disliked about the show, although you’ll hear a lot of self-proclaimed experts throwing shade at every opportunity. To them I say, appreciate the effort of incorporating an autism story into something as mainstream as Netflix. To you I say, watch it. Remember, not every person on the spectrum is like Sam, but this is a good starting point.

What was the inspiration for the story?
Robia Rashid says: “After working in network TV for a while, I just wanted to do something for myself. I was very aware that more people were being diagnosed with autism, and it was interesting to me that a whole generation of kids were growing up knowing that they were on the spectrum and wanting independence. That point of view seemed so interesting to me — and such a cool way to tell a dating story. You’ve seen the story of somebody looking for independence and looking for love before, but not from that specific point of view. I really was drawn to that. I was a little annoyed because it sounded really hard! I had to do a lot of research. A turning point was when I figured out that I wanted to use Sam’s voice-over. But it was both helpful and harder because it made the project much harder to write.”

Your son has the same desire to be loved that we all do.” This was the sentence in the trailer that made me want to watch Atypical. (I write about love here a lot)

I saw a lot of myself and my family in the Atypical family. The mum’s passion, making her life all about autism for so long that she forgot to live her own. The dad’s sweet disposition, feeling a disconnect to his son but making silent gestures to show his everlasting dedication to his family.

And of course, the sister. Sam’s sister spoke to me more in what she left unsaid. Watching the show as an autism sister I saw in her all the thoughts I have had in the last 19 years. I have so much in common with her and her family life. Not the obvious, as I am anything but a track star. Her triumphs are overlooked, her life is dependant on her brother’s and her future hangs in the balance. Sam says his sister never lets him get beat up as she instinctively steps in front of him when someone asks what’s wrong with him. Yet throughout the series she playfully punches him, hits him, climbs over him and jokes about his quirks. Casey (the sister) is so well written as a character she made me cry every time she was on screen.

Casey’s success is overshadowed because her family is preoccupied with Sam. When she meets up with them, she doesn’t hold a grudge. When her big news is obscured by what will happen to Sam, it’s her boyfriend who makes a scene about it to the parents. Casey knows Sam is paramount, she knows because she wants him to be. She struggles with deciding whether to ‘move on’ and do what’s best for her or to stay and help Sam through the hard times coming in the household. I lived this struggle. She is fearless when its comes to her brother and telling people to back off. She is his.

I can’t wait for season 2 of Atypical and I know it will be just as touching as the first. Well done Netflix. Well done to Robia Rashid for taking this on and doing it so well.

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5 questions about autism and how to ask them

There’s no such thing as a stupid question‘. I mean sure, when you are in education. But we all know there is such a thing, and we experience it every day. For example, when your tummy is rumbling and someone asks if you’re hungry. Or when you hit your knee/toe and someone asks if it hurts. Or ‘Would a fly without wings be called a walk?’. No.

One of the great things about awareness is that it gives you the knowledge to transform a stupid question into a meaningful enquiry. So, here are 5 stupid questions I’ve been asked about autism and how you can turn them into meaningful enquiries.

  1. Have you tried disciplining him?
    • Apologies stranger, I can’t hear you over my child writhing in sensory pain and screaming bloody murder in the middle of this busy supermarket parking lot.
    • Think: How will taking away his favourite toy, switching off his favourite music or making him stare at the wall for 20 minutes cure his sensory sensitivity? Discipline is taught when children are naughty. For example, when I was a child and I was disciplined by my parents because I’d done something they had expressly told me not to. Being overwhelmed by sound, smell, colour and touch is not something people with sensory overload can control. Christos wasn’t reacting to an instruction or a restriction with his tantrum. He was reacting to physical pain. You can’t discipline him for that just like I can’t discipline you for asking that question.
    • Meaningful Enquiry: What’s bothering him/her?
  2. Maybe he’s just hungry/thirsty?
    • Thanks.
    • Think: Every parent is paranoid about their child’s nutrition. With autism and sensory overload you have the additional hurdle of them not eating everything and their heightened sense of taste. The second post I wrote for this blog was about Christos’ food – Best Food Critic in Town – and the Gluten-Free diet. My dad spent hours developing new recipes which incorporated all the vital nutrition he needed and adding it to the 5 things he agreed to eat (egg and lemon soup, pasta with tomato sauce, curry, chocolate cake and halloumi). It got to a point where our mum and dad’s food was so delicious, he wouldn’t eat at a restaurant. We took food with us; hell, we tool grated halloumi with us. He’s obviously a lot better now, he eats salmon, cremes, chicken, fish curries. I think the weirdest thing he doesn’t eat is potatoes. But hey, I don’t eat beef so I guess we’re both weird. When they are young PECS is a massive help in terms of communication and hunger. I definitely recommend implementing it at home, but also having a travel version for trips to the restaurant or market.
    • Meaningful Enquiry:  Can I get them something they like?
  3. Autism? Does that mean he’s really good at maths?
    • Maybe.
    • Think: No two people on the spectrum are the same. Chris is good at math, but he’s also really good at other things. He has great memory, an amazing sense of direction and he can cook. Stereotyping people on the spectrum and not realising that, just like all of us, they can be unique in their abilities is one of the biggest downfalls of understanding autism and befriending someone on the spectrum.
    • Meaningful Enquiry: What does he/she like to do?
  4. Does he/she understand? 
    • Do you?
    • Think: Yes, they understand. It takes time, alternative therapies, PECS, speech therapy, studying, learning, testing, preparing etc but yes, they understand. Just because someone doesn’t speak your language doesn’t mean they have nothing to say. That’s what autism is, a different language. All we have to do is understand it. There are so many unanswered questions, facts, about autism that we have yet to come to grips with.
    • Meaningful Enquiry: How can I tell them [something]?
  5. What’s wrong with him?
    • The short answer is: That question. That is what’s wrong.
    • Read: Autism has been in the limelight over the last few years. Just a Google search of the word and you get articles, organisations, news items etc. The basic information is there. I have so much admiration and respect for all the parents (including my own) who raised extr-aut-inary humans without this information so readily available to them.

For those of you who are willing to go the extra mile, I will be starting the Autism Awareness Diploma with Online Academies which is currently on Groupon for £19. Netflix is also streaming a new series in August called ‘Atypical’.

Learn, read, educate yourselves. Read/watch the sad stories, the happy ones, the scientific ones. Each one has something to teach you.

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Shopping with Autism

The thought of writing this post makes me smile. It’s that smile you have when you have overcome something and then you look back on it years later and think “How was that my life?”.

In 2015 I spoke to you about Christos’ traits in “Why fit in? a) Gestures“: [He] likes to shake his arms in the air a lot, quite forcibly and he makes this laughing but not laughing sort of sound. When we are in big open spaces he’ll run like the wind. When we were in supermarkets, when we were in Disneyland, generally in places where he feels comfortable. 

Looking back on that now, it’s quite funny to think that I used supermarkets as an example of a place where he feels comfortable.

Up until the age of 8 (?Mum correct me) going shopping with Chris was a nightmare. I’m not exaggerating. It was like walking into a living breathing nightmare. Most of the time mum and dad wouldn’t take him. But when you’re on your own and you have a 10 year old and a 2 year old, and they need milk, or nappies, or food, you gotta pack up and go to the supermarket. It wasn’t something we could avoid.

Just thinking of driving up to the supermarket makes my palms sweat. It was loud, it was cold, it was too much. His sensory sensitivity was off the roof. He cried, he was on the floors, he was red, his clothes would come off, he was screaming and there was nothing we could do to console him. We would return home traumatised.

A couple of years later, we could stop the screaming, by getting him chocolate and crisps. Then came the years where we would go in and didn’t need to drag him across the floor to the till. My mum stopped apologising to everyone. When he got a bit older, we would make a list, he’d know where everything was and there was no crying. He would organise the shelves. If something in Isle 4 was supposed to be in Isle 12, he knew and he would fix it.

Now? Now it’s one of his favourite places. You can tell him what you want, he’ll tell you what he wants, you’ll try and offer a compromise, you’ll lose and everyone goes home happy. No crying or screaming involved. This is a testament to my parents. Not the strangers around us who, instead of helping, stared in disbelief, not being able or willing to understand that my brother was not naughty he was just in incomprehensible pain. My parents made this progress possible. Milestones are different to all of us, and this is a millionstone (trademarked).

When I left home in 2008 he was 10 and in the organising phase. My dad worked nights so in the afternoons it was just Chris and mum running errands, going shopping. I remember her calling to tell me they had been ‘banned’ from a supermarket. Chris was sorting out the chocolate shelf (without pay) like he always did, while mum was picking some other stuff up from a bit further down. Chris found an open chocolate bar and he kicked it under the shelf. [LOLLING] I mean, why was there an open chocolate bar there in the first place?? Who’s fault was that?

Anyway, one of the staff found my mum, told her he was disturbing or stealing or that he was part of the chocolate mafia; I don’t know what. So, they asked them to leave. Now, those of you who know my mum can imagine. Those of you who don’t, let me just tell you that she’s not like me. She’s shy, polite, kind and was shocked. In her state, she was unable to express herself and instead just stopped going to that supermarket.

My rationale was to call the supermarket, from the UK. I was quickly convinced not to. Instead, I told everyone who would listen that this had happened in that one supermarket in my home town. My sister (who broke the World Guinness record for the 4th time, as mentioned in previous post #justsaying) was outraged. I remember us driving past the supermarket and always remembering, bringing it up.

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I was so resentful of that brand, that when I moved to Brussels and it was the neighbourhood supermarket, I hated myself for sometimes forgetting to make a list and going somewhere else and instead having to buy milk from there. That’s right, I can hold a grudge. The original supermarket recently closed down, and I would be lying if I didn’t feel a tinge of happiness that that place, where my mum was made to feel inadequate and my brother was singled out for being himself, was no longer there.

In recent years, many big supermarket brands have introduced measures to help their autistic buyers. For example, The Asda “Quiet Hour”, earlier this year Tesco trialled a ‘quiet hour, Marks & Spencer has launched a uniform range to help children with Autism etc. This year the National Autistic Society (NAS) has launched the “Autism Hour” to help draw attention to the difficulties that people with autism can face in noisy environments.  If you want a glimpse into what its like, watch this video.

In the first week of October, businesses will turn down music, reduce announcements and dim lights to help create a calming and less daunting environment. A number of major retailers have already signed up to the initiative, including Clarks and Toys R Us and we hope to see many, many more name brands on the list.

I hope this is a success. I can’t help the voice in my head screaming that this is making autism the exception instead of teaching acceptance. However, the other voice in my head (i know how this sounds) is reminding me that all the people involved in this initiative will go home and talk about it with their family, their kids, their friends. I am reminded that this is awareness at it’s best because it helps you understand and take away only the best. I hope that this paves the road to us shopping together, with more understanding than judgement, more humanity than dread and with more knowledge than ignorance.