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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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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.

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Under the Sea

18618642_10155212899245030_1725112754_oWhen visiting friends and family while Chris was growing up my parents needed a distraction; that was either food, or Disney. My dad had friends who worked for a museum in Larnaca and we used to visit them often and eat yummy food. They had a little girl who owned ‘Magic English’ cassettes. For those of you who don’t know, they were an aid to learning English by using Disney characters and movies. He took one look at the opening theme song and that was it: obsession acquired. (Episodes here) I know that my family is probably reading this and remembering the theme song in their heads right now. ‘Magic English, Magic English, have fun with Disney everyday‘.

Naturally, we had ALL OF THEM.

When I was growing up, I was lucky enough to learn both Greek and English and so growing up bilingual. When Chris started speech therapy, he had his Magic English tapes. He watched them non-stop. He didn’t play along, or speak, or use the same words but he paid attention. So, for example, when he saw Flounder he knew he was a fish, when he saw Mickey he knew who that was, what he was doing and why. He just couldn’t express it. You see, the problem with the world today is that we value spoken word over unspoken. We have been programmed to believe that someone who doesn’t ‘like’ your picture on social media thinks you’re ugly. Someone who doesn’t share their feelings is up to no good or doesn’t care. We stopped reading between the lines and somewhere between those lines is my brother.

There is one scene that I remember most of all. It’s using the Little Mermaid, introducing all the characters and ‘Under the Sea’ is playing. Sebastian is singing away, being all Sebastian about life under the sea, I think it was part of the Friends learning cassette. I remember him smiling, dancing, and enjoying that scene. I remember how much of a teenager I was thinking this was silly because it was so basic. I remember it now, and I wish I was back there pushing him to repeat words, to learn them in English, dancing with him and just enjoying his happiness. Hormones are such nasty things. (Magic English – Under the Sea). Before Aladdin and the Lion King, Chris was obsessed with Pinnocchio, the little boy who wished to be real. He loved it when Pinnocchio and Jiminy were under the sea meeting random fish and trying to find Geppetto; and he would hide when the whale was on screen. That scene is also in the cassettes.

Those cassettes were a big part of our childhood and yet another part we owe to Disney.

He loves anything that has to do with water or the sea. You may remember that it was during a Sandy Holiday that we first thought of autism and how he loves swimming on his own. Aquatic treatment is also one of the alternative therapies I mentioned earlier on: We’ve found that water provides a safe and supported environment, which not only supports Chris, but also provides him with hydrostatic pressure that surrounds his body in the water. This pressure actually soothes and calms him, providing him with the necessary sensory input he craves.

What awoke this memory you wonder? Or maybe you don’t but you’ll find out anyway. The Scarborough Sea Life centre introduced an autism-friendly morning last Saturday (13th May). The centre will opened an hour early for an “Autism friendly session”, “with an accessible quiet area, considerate lighting, reduced sound and exclusive use to help families enjoy the aquarium experience in a relaxed and understanding setting.”

If you are in the UK: Max Card is a card you can apply for with your local city council if you are a family with additional needs, not just autism. The scheme is designed to help families save money on great days out at castles, zoos, bowling alleys and more. With local, national and international businesses becoming more autism aware this card might be used more than you think! Autism-Friendly events are expected throughout Merlin Entertainments attractions including Alton Towers and other Sea Life centres in the upcoming months to make sure all children in the UK have the chance at experiencing a magical day out. For more information and booking details are online at www.mymaxcard.co.uk/venues/autism-friendly-day .

I encourage you to use the Magic English aids (^they are all on YouTube, link above^) whether your child is in speech therapy yet or not. Its an entertaining way to spend the afternoon and you may not see immediate results but it does make a difference.

Remember, just because you can’t see progress, doesn’t mean it’s not happening.

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Hope in April – Until everyone understands

World Autism Awareness Week: 27 March–2 April 2017

World Autism Awareness Day: 2nd April 2017

USA National Autism Awareness Month: April 2017

As I write this, I am listening to Theresa May trying to answer questions about triggering Article 50 earlier on today. And then I look over at Christos playing on his game boy and I think “What can I do?”. I’m home until Sunday, which incidentally is World Autism Awareness Day. This is the day that Autism Speaks launches Light It Up Blue – where thousands of iconic landmarks and buildings join the hundreds of thousands of homes and communities around the world to “light it up blue” in support of people living with autism. Autism-friendly events and educational activities take place all month to increase understanding and acceptance and further support people with autism. Join this initiative here. You can register your business, you can wear a blue t-shirt, a blue accessory, you can use the official hashtag for the event #LightItUpBlue, you can donate, or you can just read one article about autism. Whatever you do, all that matters is that you do something. Autism Awareness Day/Week/Month is all about knowledge, and it’s all up to you.

Every year I post about what you can do and what is being done around you. So here goes:

  1. Display the puzzle: The Autism Awareness Puzzle Ribbon is the most recognized symbol of the autism community in the world. Wear the Autism Awareness Puzzle Ribbon – as a pin on your shirt, a magnet on your car, a badge on your blog, or even your Facebook profile picture. The puzzle pattern reflects the complexity of the autism spectrum. The different colours and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope that through increased awareness of autism, and through early intervention and access to appropriate services/supports, people with autism will lead full lives able to interact with the world on the own terms.
  2. Find out what’s happening near you: Connect with your neighborhood. Many Autism Society local affiliates hold special events in their communities throughout the month of April.
  3. Watch a movie or documentary about autism. Louis Theroux’s documentary “Extreme Love Autism”, Oscar nominated “Life, Animated”, “Autism in Love” on Netflix, “Girls with Autism” on ITV are just a handful of recent depictions of autism.  You can also read about Autism, and it doesn’t have to be a journal, or research. It can be fiction, like “The Curious Incident of the Dog in the Night-Time” by Mark Haddon, “House Rules” by Jodi Picoult or “Memoirs of an Imaginary Friend” by Matthew Dicks.

IMG_73964. Wear blue.

5.  Watch the National Autistic Society’s video about how you can get involved.

6. Fundraise. In your community, your school, your work or within your group of friends. NAS has released free teacher resource pack too. Each pack is level-specific, and contains teacher guidance, lesson and assembly plans, presentations and activities to help you improve understanding of autism at school. For fundraising ideas see what Connor is doing this year. A fundraising pack is also available for you to get for free or get ideas. Join a bucket collection or create your own. From 27 March–2 April, collections will be taking place across the UK at different train/tube stations! Participating stations include: King’s Cross, Waterloo, Euston, Paddington, Victoria, Baker Street, Charing Cross, Liverpool Street, Oxford Circus, Leicester Square, Cardiff Central, Bristol Temple Meads and Nottingham station. Each day will be split into 3 hour shifts and if you’d like to get involved please email Caroline who will tell you which places are still available. If you are not in the UK or there isn’t a bucket collection near you, you can try collecting at your local supermarket, local train or bus station, workplace, local community centre. Top tips and important information for bucket collections can be found here as well as information on sending money. If you are in Cyprus and you want to hold an event like this you can contact our Autism Support Group Famagusta, or me to pay into a local organisation.

7. Join a Night Walk for Autism in London, Manchester or Bristol if you are in the UK or create your own! Watch the 2016 Night Walk video and be inspired!

8. Talk to someone on the spectrum, or their family. Or me.

9. Autism-Europe will be focusing on the theme “Break barriers together for autism – Let’s build an accessible society”. The aim of this campaign is to understand the barriers to inclusion autistic people are up against and how our society can work together to overcome and remove them. The campaign toolkit explains the idea behind the theme and outlines in detail how and when you can support the campaign in whichever way you prefer. The toolkit bring together recommendations on how you too can be part of our mission to make people more aware of these barriers, and to build momentum in pushing for their removal.

10. Tell someone April is Autism Awareness Month.

It really is that simple. Awareness does not need a voice, it needs understanding. Awareness is achieved within oneself before it can be transmitted to others.

 

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Hope arrives on Sesame Street

Julia has been a work in progress since 2015 when she was first announced. (Autism in 2015)

Christine Ferraro, a writer on Sesame Street for 25 years, along with the rest of the staff talked about how they realised that autism was something that needed to be addressed. They decided they wanted to teach kids more about people with autism, who they probably will interact with at school, playgrounds, supermarkets etc.

“So that when they encounter them in their real life it’s familiar. And they see that these — these can be their friends too.” 

Julia-on-Sesame-Street-Has-AutismJulia (pictured) is really nice and loves to sing. Julia also doesn’t react the way the other

muppets do. For example, when the rest of the muppets introduce themselves, Julia doesn’t respond, she is sensitive to loud noises, and she jumps up and down when she is excited; the rest of the muppets join her, and make a game out of it.

Watch this video from the show where Julia is flapping her arms, and how it is turned into something positive.

Julia is brought to life by puppeteer Stacey Gordon. Stacey is a mother of a son with autismshawglobalnews
. She believes that “It’s important for kids without autism to see what autism can look like.” Julia isn’t exactly a new face — she was first introduced in October 2015 as a digital Muppet through the organization’s broader autism initiative, Sesame Street and Autism: See Amazing in All Children. Sesame Workshop has worked with more than 250 autism experts and organisations to help with its See Amazing initiative. Stacey also draws from her own experiences with her son to portray Julia accurately.
Sesame Street viewers will see Julia get upset by loud sirens, she will have trouble communicating with Big Bird when they first meet, leading Big Bird to think Julia doesn’t like him.

I hope that, by incorporating a character from the spectrum into a beloved children’s show, we will be setting a foundation on which parents and teachers can build autism awareness on. Awareness from a young age about a neighbouring kid, a class
mate or even a stranger at a shop is what will slowly make the autism stigma fade.

My hope is not to eradicate autism, it is to make it visible. Autism is here to stay therefore, when we fight, we do not fight in spite of it but we fight through it.

Sesame Street’s “Meet Julia” episode will air April 10 on HBO and PBS KIDS in the U.S., as well as Cartoonito UK, ABC Australia and Televisa in Mexico. A more global rollout of the episode is planned for later this year.
cbsnews

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Hope in Poo

(One of) my New Year’s resolutions was to read more non-fiction books. I just finished a book about Pablo Escobar and now I’ve moved on to a nurse’s recollection of what it was like to be a nurse in the 50’s.

Both post-war Colombia and post-war Britain made the current politics scene more real than ever. People had just gone through a wars that left thousands dead, they lived in fear for years and in the end they thought it would never happen again.

IMG_5933And then these guys come along. In times like these it’s easy to give up and it’s easy to overlook hope.

So, I’m going to start a monthly hope write up. This month’s hope can be found in poo. That’s right, our world is so effed up that we can now find hope in poo.

On the 23rd January, 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. The investigation involved 14 days of therapy with oral vancomycin (an antibiotic used to treat a number of bacterial infections) followed by a 12- to 24-hour fast (clear liquids only) with a bowel cleanse using MoviPrep (laxatives). On day 16, to repopulate gut microbiota (the ecological community of commensal, symbiotic and pathogenic microorganisms that literally share our body space), a high initial dose of standardized human gut microbiota (SHGM) was given either orally or rectally for 2 days followed by daily, lower maintenance oral doses of SHGM coupled with a stomach-acid suppressant for 7 to 8 weeks. The stomach-acid suppressant was used to increase survival of SHGM through the stomach. The children were followed for an additional 8 weeks after treatment ended.

What?

Basically:  18 patients aged 7 to 17 years who had ASD and moderate to severe GI problems were given antibiotics for bacterial infection followed by laxatives for 14 days. Then, they were administered a high dose of a range of microorganisms for 2 days. Followed by a lower dose of said microorganisms and stomach-acid repressants for 7-8 weeks; which helps the microorganisms survive longer.

ASD-related symptoms improved, as reported by the Parent Global Impressions-III (PGI-III) assessment, which evaluates 17 ASD-related symptoms, showed significant improvement during treatment and no reversion 8 weeks after treatment ended.

One of the many theories about where autism comes from has been the gut. That’s why we use gluten-free and casein-free diets as an alternative treatment. In “Best Food Critic in Town” I mentioned: Marilyn Le Breton, who explains:

“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.”

What this study proves, on a small scale, is that perhaps cleaning the gut of neurodiverse people from the bacteria that the body does not keep in neurotypical people could be the one of the answers we have been looking for.

Hope.