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21 and Atypical: You can’t spell autism without family

Celebrating parents and family in April – Autism Awareness Month – is a must. As well as being thrown into parenthood for the first time (or again), parents are thrown into the autism spectrum maze as well. They not only navigate parenthood but also autism and any other siblings. They are pushed into a minefield without any instruction and all the while knowing that every decision they make will change the lives of the family unit (and beyond).  They are the first example of strength we witness as siblings and their love, compassion and bravery mould us, push us, make us. I have collated a few of Stephanos’ and Christos’ family pearls of wisdom below:

Chriso (Stephanos mum):

“I can remember back in the days of nursery, just before the Ayia Napa primary school was to open the special unit for autism when I met Christos’ parents. We were introduced to each other and shown around the special unit so as to show us how it was going to be specialised and in the hope that they would be board. After that we kind of bonded and were in close contact for a lot of issues, not just autism, ranging from therapies, to school, to just life. During primary school and Apostolos Varnavas Stephanos has become connected to kids but Christos used to always save a swing seat for him and I think this camaraderie has stayed with them throughout the years. I always got the impression that the boys had full understanding of each other. They respected each others boundaries and would  not react or interrupt each other’s stimming behaviours.”

“When laughs it makes us all laugh with joy. It’s little things like when he finds cheese in the fridge and grabs a slice of bread and makes a mini sandwich, or when the electricity gets cut off and he goes to the electricity box and tries to switch up the MCB, or when his siblings play hide and seek or ball or generally doing things all together that reminds us that ultimately as long as he is happy we all are too. He is so full of love for his family, he sees one of us upset and he will approach and look at the tears or the face because he knows something is off. He will laugh at appropriate times of happiness, or if he sees his sister that is away studying or the others who come and go, he understands faces even though he wont always respond as per the social norms.”

15032849_10154114892521238_68260037536364233_n“Now they are 21. They go out into a society who has not prepared to welcome them. After this point and after our long journey, full of ups, downs , happy and sad we arrive at another hurdle. But, just like our boys we are always fighting, searching and promoting the awareness to all and especially to the parents who have just had a diagnosis and think their world has caved in. We stand by them because we made a decision to stand up and keep going for as long as we can. Crashing out is not an option because what is at risk is our boys. Autism has given us the opportunity to appreciate the smaller things in life which we would overlook in an already busy world.”
Chris (Stephanos sister):
“I am so amazed by his memory.  He remembers choreographies and song lyrics from years ago. So much so that we can dance to “I will survive” and he will remind me of the steps.”
When he sings Hakuna Matata “He hits the exact tone and also makes the background sounds of the music just with his mouth, he is unbelievable and sothumbnail_97F59141-AC3F-4BF6-9715-B348B40D813E talented. I can see that in general he likes music and especially Disney ones but I think it makes him feel more special that he gets to sing his favourite songs with me. Disney was definitely something we both enjoyed as kids so much and I think it was a way that we both could relate since we loved Disney and grew up with it until now. So I would say it’s more like a the first bond that made us become more closer as sister-brother relationship. I was listening to the Disney song ‘You’ll be in my heart’ from Tarzan few days ago and I instantly started being emotional when singing along cause all Disney songs just remind me of Steph and always will.”
“When he was younger he was a perfectionist he wouldn’t let me draw stuff the way I thought it was correct. He would just take his pen and do it his way on top. Sometimes he still does it now, but it was worse before when we were younger. I think Steph  is fine to do anything with me except drawing because he loves it that he wants to draw in his own way and that’s what makes him be so amazing at drawing.”
“It’s fascinating how autism can bring all people from different areas of the world together”.
Christiana (Christos’ mum):
After the diagnosis “…and while we thought we were alone in this battle, we met Chriso and Stephanos and that gave hope in our lives. We had a common cause and both families fought together. I remember the first time i saw Stephanos I was taken aback by his big bright eyes and his smile, and when i saw Chriso I saw an ally. She inspired me and gave me strength and still does to this day.”
884456_1403665136540932_166050827_o“Even though Christos is not social and doesn’t like too much interaction or hugging he is much more patient now than before. Even though isn’t friendly at first with people, with Stephanos it was always different. They never spoke to each other, they never went out or hung out, perhaps not even looked each other in the eyes once but always acknowledged and accepted each others presence. i really dont know how but in some way i am sure they have their own language. they both love music and walt disney characters. they are silent friends, and i am so happy when they are together.”
“Christos’ behaviour has changed and he has developed awareness which he did not have before. Christos is a loving boy, sensitive, and very well organised. He is perfect with directions, rarely being overwhelmed or getting lost. In fact, he helps us not to get lost, especially me when I am driving! He has eyes on the back of his head and you can never get away with anything he doesn’t approve of; like not washing your glass and not putting laundry for even one day. He has been travelling abroad from a very young age and has adapted perfectly to airports, trains, buses, queues etc.”
“Christos is an angel in our lives, he has brought us light, meaning and made us better human beings. We are so blessed to have him and our goal is to keep that smile on his face always because he is a happy child who soon will become a happy adult.”
Ajith (Christos dad):
“Their whole life starts from home; we are their first image of men and women, their example of people, family, lovers, parents, husbands and wives. Parents need to understand that once you become parents you become a role model, your family is you and even though it can be impossible at times to 16910928_10154942225380030_1134673750_omaintain the balance, keep it simple in your heart without looking at it as a duty but a happy and useful lesson in life.I want to conclude by saying that children with special needs, learning disabilities etc are my heart, I want to stress how important it is to make them feel equal, cuddle them and stop trying to adjust them to society’s unreal, outdated expectations.To all the families out there who are on this journey, repeating the first piece of advice I heard before starting this journey “Keep them happy”. It’s a way of life. My thoughts and prayers are with you every day.It is my life’s mission, along with the support surrounding us, to keep my son, and my family, happy to the best of my knowledge and ability.”
“I have learned and will learn so much from my son. Life for him is so simple and happy, in his own world, his own universe that we can only peek in once in a while. His demands are innocent and very genuine. He has his own routine, his own ways and his journey through learning, communicating, and compromising is simply beautiful. It is a blessing to live with him and see him grow.”
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21 and Atypical: Planet Blue💙

It’s autism awareness month and you may notice that a lot of the posts are blue. You may also scroll past or see numerous autism-friendly events and educational activities which will be taking place all month, everywhere in the world, in order to increase understanding, acceptance and further support people with autism.

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But why blue for autism? While there’s no definitive answer I think the reasoning is found in the meaning of Blue.

Blue is a colour found in nature such as the pale blue of a daytime sky or the rich dark blue of a deep ocean. It is for this reason that it is described as calm and serene. Blue seeks peace and tranquillity and although life with autism is not calm, Christos and Stephanos feel safe in their own space and surrounded by people that adore them. Stephanos’ godsister, Joanna, remember their days in primary school when Stephanos used to wait for her to pick him up from class for break and hold her hand when they had to play volleyball or basketball at gym. Aren’t you most at peace when you feel safe?

Blue is also a cool colour which can sometimes seem icy, distant or even cold. Before the diagnosis, the speech therapy and before we adjust to this new world of living with autism it can sometimes seem as though they are distant or not interested. When they don’t respond to their name, when they wiggle themselves out of a hug, when they wipe away a kiss, it may seem like a loss but Christos is an affectionate man who intimacy. He laughs with us, eats with us and cries when we are sad. He helps us when we are in pain and he surprises us with hand holding or a kiss. Stephanos, is more social in general and he allows kids to approach and touch him, to hold his hand, to guide him and even to kiss his cheek. He responds and seeks affection from his family while also showing them he loves them daily. The myth about people on the spectrum being unapproachable is one we aim to dispel every day. Don’t you find that you appreciate your alone-time as well?

42816046_319009918650137_5237303023620849664_nBlue is idealistic, it explores and pushed the boundaries of self-expression; in fact, it is the most used colour in business and 53% of country flags incorporate some shade of blue. Christos and Stephanos push limits in communication without words. They are imaginative and creative in their journeys. Stephanos dances, sings, plays music and has his own drawing studio. At school his talents are further cultivated by creating through woodwork and using the hot glue gun to complete his own work. His abilities are not defined by his speech or his ways of stimming and he reminds everyone around him to not underestimate his neurodiversity.

Blue can be conservative and predictable, a safe and secure colour; a traditional colour if you like. Christos used to be notorious for not liking change. Over the years we have seen such massive changes in him in terms of eating habits or changing his daily schedule last minute. He has become open-minded and has broken out of the shell the word ‘autism’ imposed on him. He is safe in his predictability and unpredictable in his emotional intelligence. Change may be difficult for Blue but how many of you are completely comfortable with frequent changes?

Blue also represents freedom. Perhaps freedom of mind, freedom to be whomever they want to be. Free from the restraints and pressures of social ‘norms’, liberated from being confined in one box and ‘fitting in’.

So, it’s autism awareness month and if you are reading this you’ve taken one step to contributing in spreading awareness. Other things you can do are:

Tell someone it’s autism awareness month.

Wear blue; a t shirt, accessory, or even blue jeans with the intention of it being for autism!

Image result for autism awareness puzzle ribbonDisplay the puzzle: The Autism Awareness Puzzle Ribbon is the most recognised 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. 

Find out what’s happening near you. Many Autism 15032849_10154114892521238_68260037536364233_nSociety local affiliates hold special events in their communities throughout the month of April.

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.

Donate to your local charity or ours Autism Support Famagusta .

Read #21andAtypical, share your story and #StandUpForAutism .

By embracing the puzzle piece, not the missing puzzle piece, we embrace the piece of our world that is autism. Tomorrow, the world will follow a tradition pioneered by Autism Speaks and Light It Up Blue. And while lighting a blue light doesn’t help parents struggling to balance a job, a family and autism, it raises awareness. Awareness will come from people who notice the different monuments/buildings worldwide going blue, a window in a quiet street displaying a puzzle ribbon, a local business fundraising for autism and they will ask questions about it. They might tell others, or go home and read about it. They may recognise it next time they see it and not stare, they might pass down the knowledge to younger generations.

If we could go into every house and help every family struggling with autism, we would. Instead, we will wear blue and we will tell people to wear blue. We will tell them why and we will talk about autism until all the pieces fit, until everyone understands.

From the Empire State Building in New York, Niagara Falls, the London Eye, Sidney Opera House, Christ the Redeemer in Rio de Janeiro, Petra in Jordan, the Eiffel Tower in Paris, the Leaning Tower of Pisa in Italy, the Taj Mahal in India, the Table Mountain in South Africa, the Burj Al Arab in Dubai, the Canton Tower in China, and the Great Buddha at Hyogo, people all over the world will Light it Up Blue to honour World Autism Awareness Day tomorrow. Will you?

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April 2018: 2 new facts

  1. 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 today, a day dedicated to raising awareness about ASD across the world.
  2. Numbers published by the World Health Organisation show that approx 1 in 160 children are diagnosed with autism. That suggests that of the 7.2 billion people living on Earth, approx 45 million are diagnosed. Plus the lost generation and women that never received a diagnosis due to a variety of factors.

45 million! Autism is no longer a hidden disability.

Autism awareness is not confined to this day, or to this month. We fight for it every day to help educate people on how to better understand autistic people and lessen the stigma and discrimination that autistic people face in every day life. Awareness means that the community can identify and respect the autism spectrum. Awareness means that the financial burden families have to bear may be lessened with proper access to support and by making autism education and alternative therapies a mainstream issue.

Welcome to autism awareness month.

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The “Normal” Cult

29830733_10156190751535030_853762012_oIt’s autism awareness week if you hadn’t noticed & I read this article on BBC about women on the spectrum – It all made sense when we found out we were autistic . These women are teachers, PhD candidates, artists, comedians, psychologists and they are inspiring (& autistic).

About 700,000 people in the UK are on the autism spectrum, according to the National Autistic Society. That’s approx 1.05% of the UK population.

In a one-hour special for Channel 4, tonight 28 March 2018, trainee human rights lawyer Georgia Harper and artist Sam Ahern, who both have autism, aim to uncover the true face of autism in the UK today. I hope you’ll be watching.

Autism awareness isn’t just about the future of autism, it’s also about the past and present. It’s about every person who feels they don’t “fit in”, all the times it feels like everyone else was given a manual on life, a ‘lost generation’ of thousands of adults going through life without a diagnosis. Autism awareness is about informing, spreading knowledge, sharing stories, finding new ways, and removing the stigma imposed by a system that doesn’t understand.

Autism awareness isn’t spread only by those living with autism. It’s a plague – a good plague. Awareness is born out of love, it spreads with our voices and makes an impact with our actions. It starts with sharing a story with another mum, or with children asking questions, with major airports introducing measures to help passengers with autism, shops introducing ‘autism hours’ and employers investing in autism training for staff. All the milestones we have witnessed in the world in the 5 years started with a voice.

The biggest obstacle to understanding autism is the expectation to look ‘normal’, the imposition of being ‘neurotypical’ and the social bullying that makes us dismiss and disable anything outside this fictional realm of “normal-ness”. We are programmed to treat anything different differently but what happens when you can’t see the difference? We grow up judging books by their covers and learn to condemn them when the cover doesn’t match what we thought should be inside. You ask someone,”Why is it weird if someone won’t make eye contact?”. Unless it’s a cultural trait, no one can think of an answer except a variation of “It’s not normal”.

You see someone and they look ‘normal’, they speak ‘normalish’, their lives seem ‘normal’ – they have a PhD, or a job or a family and they fit in your category of ‘normal’. As soon as you find out they are on the spectrum your perception shifts. You think, “how? why? really?”.

Autism awareness aims to infiltrate and destroy the ‘normal’ cult we subscribe to. It wants to shatter illusions of what we are supposed to do, it wants to expand our horizons and adds new words to our dictionaries. Just like all the once outcasts of this made up and exclusive society of “normal” the autism awareness movement is working. One in 100 people in the UK are diagnosed with ASD, teachers and police officers are trained, there are groundbreaking findings in ASD research and major channels invest money in documentaries, series and autistic actors/presenters (or muppets).

Autism is becoming a regular headline and it all starts with a voice. April is Autism Awareness day/week/month: here are some things you can do to help – Until everyone understands ; Wear Blue ; 30 things to do in April .

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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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When Will We Learn?

I’m not going to write about the atrocity that was the US Election – here’s what i felt a year ago #Project324 Trump, Republicans and Disabilities, oh my.

I’m going to write about hope, the future. I’m going to remind you that you can change things, that you need to be strong in the face of racism, discrimination and unfairness. I’m going to ask you to take action, to not let this perversion become our legacy. I’m going to ask you to think about what world you want our kids to grow up in and what we can do right now to make sure they do.

Ambitious about Autism is an organisation i work with, they’ve put on projects like: #EmployMe for which I wrote –  What happens when you turn 18? UN International Day of Families for which I wrote – A letter to my autistic brother on his 18th birthday . Fun fact – I wrote this in 15 minutes and cried the whole way through, I haven’t read this since it’s been published. Maybe fun isn’t the word for it. Autism Friendly – Ambitious about Autism supported a London-based restaurant in winning the first of the National Autistic Society’s Autism Friendly Awards. Making the world Autism-Friendly Back to School – School Bells

Their latest is called #WhenWillWeLearn. The ambition is to make the ordinary possible for children and young people with autism. They provide services at schools and colleges, raise awareness and understanding and campaign for change. 

And they don’t give up. Their campaign asks you to write to your MP (if you are in the UK). Those of you outside the UK can write to your local authority, or you can write to me – I would love to forward your letter to our MPs, because it doesn’t matter where you live. A small change can resonate around the world – that’s the beauty of awareness, it doesn’t have borders. Sign up to show your support: ambitiousaboutautism.org.uk/pledge-your-support or email me.

The campaign highlights that:
80% of children with autism experience anxiety every day about attending school;
45% had been illegally denied their right to a full education;
Over 1000 parents are forced to take legal action every year to get the support their child is entitled to;
42% of classroom teachers say their training doesn’t prepare them to meet the needs of children with autism; I wrote about this here.

So, please don’t give up. Because we have made a difference already; businesses introducing schemes to train people on the spectrum like Ford, Apple, Microsoft etc; stores introducing quiet hour to accommodate autism; TV shows are introducing characters on the spectrum; theatres/cinemas are catering for autistic youth; ‘neurodiversity’ is an official term and it’s all because of all of you, reading about autism and not giving up.

15007644_10154605350205030_2088488013_oI traveled to Venice on the 3rd November and, incidentally, it was also the day that Gatwick became an Autism Friendly airport. A ceremony was held but I didn’t know about it until later when i was stuffing my face with gelato and thinking about how much Christo would love it. The airport was presented with an award by the Chief Executive of the National Autistic Society to mark the achievement. Gatwick met a range of Autism Friendly criteria to help passengers, their families and carers, it has been praised for providing clear and accessible information for passengers about the airport and the assistance available to help plan for their journey. Staff have been specially trained to help assist autistic passengers and a hidden disability lanyard system has been put in place. HOW EXCITING. I wrote about Chris at the airport here. I know, I’ve referred to my own writings a lot in this post but it just goes to show that the information is everywhere, and it’s only a click away. So, click.

It’s up to us – we have to do this, we have to write, speak, call, email, visit, shout about all the things we want and by doing it for our own, we are doing it for everyone; one step at a time. Now, more than ever, we need to unite. We need to be one and we need to make our voices heard, because they did – so why can’t we? Now more than ever, we should recognise the power or the people. Because it was people that did this, and it will be people that change it.

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The end of Chapter 3

Earlier this week I found out that i have finally passed my Legal Practice Course; an LPC is the vocational stage of training to be a solicitor that must be taken after completing a law degree and before practicing. This means that after 8 years of being a law student, I am done. I was trying to describe to my friends how happy I was to receive the news and I couldn’t find words.

If you are a regular reader, you know that this was part of my life plan. I moved away from home, I’ve been studying since 2008 and working alongside my studies to set down the cornerstones of the life Christos will have to join eventually. This last month has been a tough one. My nan was in hospital for 3 weeks. My nan, or my 75137_10150101622680030_3087748_nyiayia, is a 2-time cancer survivor, she’s worked since she was 14 and she raised us all with such love. She loves a good sing-along, a western cowboy film, she knows how to throw a good party, she loves a good beer with her lunch and a whiskey on special occasions. She looks amazing; i know I’m biased but look at her! She always takes care of herself even though she worked 16-hour days, she never said no to a customer or an ill aunt, she was never too tired to run around after her grandchildren and I’m so proud of her – I used to borrow my yiaya’s jewelry and shoes, that’s how cool my yiayia is. She’s one tough cookie. I love my yiayia, she makes the best food, the best tea, toast and jam, she makes the best cakes (she owned a confectionery), she cries every time we speak and she rubs my feet even though hers are way more tired. I love my yiayia the most though because of how she treats Christo. I talk a lot about how our family felt after the diagnosis but my nan and granddad were right there with us. They went through all the emotions, all the ups and downs. They picked us up from school, babysat, they took Christo to speech therapy, to the oxygen chamber appointments, they watched the Lion King a thousand times, they picked up after  a tantrum, they always had a stash of calming treats, they stopped singing because he doesn’t like it and they never gave up on him. She has been a support to us and to Christo for as long as he has been with us. She knows his language, his schedule and how to bribe him for kisses and hugs. Christo knows he has to respect her, he knows which buttons to push and he knows that every time he says ‘yiayia’ she is ready to give him the world. I love the way they love him because it looks like the way i love him. It’s my only consolation, knowing he is loved that much every day I am not there.

By completing the course, I’ve ticked off a big box on my preparation list for our future. It’s something I have been working on for years, it’s the one thing I’ve worked so hard on, it’s what i will base the rest of my life on. And it’s done, it’s just there now waiting to be built on – waiting for me.

The end of the LPC is the end of the first big chapter in my life. 2 years of 4000 words every 10 days, 17 exams, sleepless nights, lots of wine, and lots of tears and it’s over. I breathe a sigh of relief before I move on, i take a moment to leave this behind and digest what it all means. In my head, everything i did was a step closer to the end game – the LPC was about 150,000 steps. I can look at my brother now with confidence, with certainty that we are going to be okay. I like to think that if he knew he would be proud, I like to think that deep down he knows. I can look back to when I left him to study in Lancaster and not be struck down by guilt; because after 8 years i did what i left him for. I think of all the birthdays i missed, all the tantrums, all the times he needed me and even though i can never go back and be there, it wasn’t all in vain.

Stay tuned for Chapter 4 of Life with the Pereras.

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School bells

Memories.

I have recently become more aware of the fact that i have blocked large chunks of my childhood and school life from my memory. There are things I don’t want to remember so at some point in my adult life i decided to put all those years in a black box and bury it somewhere. Unfortunately, that means that I also buried a lot of Chris’ early years, so many fun times with so many good friends that I only remember when they remind me. Even then, it’s like a dream, like it never happened to me. In primary school, i was bullied for the majority of my time there. All I remember is being super in (puppy) love with a boy, a doll house on my f74945_10152065431390030_291941620_nirst day, my favourite teacher and lots and lots of tears. I was bullied because i am not white; even though everyone in Cyprus is tanned. I was thrown down stairs, spat on, thrown in holes, in SKIP bins and verbally abused almost daily; I have scars on my knees, arms and face to this day. In high school the abuse settled and I made friends that I have to this day. Life at home was not great and I don’t remember most of those years either. I have a tattoo and a piercing to reassure me that i did go through a rebellious phase. I don’t remember what people thought about me, who wanted to be my friend and who didn’t. I don’t remember feeling like an outcast or being popular. I don’t know who i had lunch with every day. I know i had people that loved me, and that’s so enough, and so comforting.

I read this recently.

Several times lately I have tried to remember my time in middle school, did I like all my teachers, do I even remember them? Did I have many friends? Did I sit with anyone at lunch? Just how mean were kids really? I remember one kid on the bus called me “Tammy Fay Baker” bc I started awkwardly wearing eye liner in the sixth grade, I remember being tough and calling him a silly name back, but when he couldn’t see me anymore I cried. I do remember middle school being scary, and hard. Now that I have a child starting middle school, I have feelings of anxiety for him, and they can be overwhelming if I let them. Sometimes I’m grateful for his autism. That may sound like a terrible thing to say, but in some ways I think, I hope, it shields him. He doesn’t seem to notice when people stare at him when he flaps his hands. He doesn’t seem to notice that he doesn’t get invited to birthday parties anymore. And he doesn’t seem to mind if he eats lunch alone. It’s one of my daily questions for him. Was there a time today you felt sad? Who did you eat lunch with today? Sometimes the answer is a classmate, but most days it’s nobody. Those are the days I feel sad for him, but he doesn’t seem to mind. He is a super sweet child, who always has a smile and hug for everyone he meets. A friend of mine sent this beautiful picture to me today and when I saw it with the caption “Travis Rudolph is eating lunch with your son” I replied “who is that?” He said “FSU football player”, then I had tears streaming down my face. Travis Rudolph, a wide receiver at Florida State, and several other FSU players visited my sons school today. I’m not sure what exactly made this incredibly kind man share a lunch table with my son, but I’m happy to say that it will not soon be forgotten. This is one day I didn’t have to worry if my sweet boy ate lunch alone, because he sat across from someone who is a hero in many eyes. Travis Rudolph thank you so much, you made this momma exceedingly happy, and have made us fans for life!

Leah Paske – Bo’s momma

School is.. an experience. Some of us forget, some of us grow out of it, some despair and some thrive. We were all insecure, we all had self esteem issues, we all wanted company. How much easier would high school be if we just didn’t care though? If we didn’t shield ourselves, change our habits and go over and over every single word, pause and comma we used throughout the day? Some may say it’s because they don’t understand; that’s not true. Chris understands so much more than we give him credit for. Our kids are free, they are untouched by the weight of fitting in. Their spirit is unspoiled.  They get to be themselves without the fear of judgement. They can sit and have lunch alone without a care in the world, without trying to impress. I’ve talked about this before; the things we worry about are reflections of how much we are affected by the standards imposed on us by our community. We worry when they play alone, when they don’t get invited to parties, when people stare. We worry because we don’t understand what it’s like to live life without constantly trying to fit in.

I’m grateful for his autism too Leah. I am thankful i get to look up to a boy who is completely, carelessly and overwhelming okay with just being himself.

For the first day (back) at school if your kid has autism:

  • Dress them in their favourite clothes. If they have a uniform (get it from M&S) do a couple of trial runs before the first day so that if there’s anything uncomfortable you can sort it out before.
  • Pack their bag with them. They should know what’s in there and they should have a say in what’s in there. Make sure it’s stuff they have used before and it’s not all new and shiny.
  • Take them for walks around school (if you haven’t already) to familiarise them with the area. If you can meet teachers before hand – even better! Take the backpack with you, with lunch and maybe even wear the uniform. This way they know it all goes together.
  • Make sure the teacher knows how to handle questions, and that you are available to talk to the classmates about autism. Pretending like autism is not there is not the solution, it’s not acceptance.
  • If they have stimming toys, pack them.
  • Do a trial run of the early wake up.
  • Make a schedule and sit down and go over it with them.
  • Don’t make it a big deal. I mean, it’s the biggest deal EVER, but don’t create expectations they have to live up to.

If your kid doesn’t have autism talk to them about it. Chances are, they will come across someone on the spectrum during their education and you have to be able to answer questions. Learn about autism, educate yourselves, your children, your family. School doesn’t teach us everything, so be proactive, be positive, be generous and be inclusive. By teaching your kid about autism you are making someones school year bearable and you will make an autism family’s life just a little bit better.

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Summery Blue Balloons

A couple of posts ago I gave you a glimpse into my version of the world of Silver LiningsSilver Linings is a world we have created. In my head, it has very high ceilings and no stairs, or chairs or anything you can climb on. The silver linings are like balloons that deflate just a tiny bit every time progress is made. You go to silver linings when you are scared, because its a place of hope. It’s a place where fears and insecurities can be calmed because there are so may prospects and wonderful works in progress. 

There has been a lot of fear in July, all around the world we have witnessed inhuman acts of violence and hate. I forgot about Silver Liningsimg_3215. So, I spoke to my blue balloon, the one I will wait for forever the one that’s always just out of reach. He called me from the tablet we got him for his birthday. We said the usual: when I come to the airport he will eat bake rolls and drink iced tea. He kissed the screen and then asked mum to hang up so he could keep playing his game. I asked what he was doing now that schools are out and mum said that he is taking lessons with one of the girls. She has books, gold stars and even a red pen; she helps him with reading, writing, art and math. He is enjoying his summer, he is happy.

So, I went out in search for happiness, progress and deflated balloons and here’s what I found:

In Australia: Jack S, a 20 year old autistic man has landed his dream job in one of Sydney’s top restaurants. He will be working in the kitchen of award-winning celebrity haunt Catalina in Rose Bay. Jack has received a hospitality certificate at Meadowbank TAFE as part of his HSC and received an award for the Cerebral Palsy Alliance’s Transition To Work program. He works three days a week in the busy kitchen at the restaurant, under the guidance of head pastry chef Berny Osorio. His main duties include mixing, kneading and baking bread; preparing fruit; making biscuits; mixing marshmallow; washing salads; and plating up. You might remember, or know, that my dad is a chef at a hotel in Cyprus. Chris and I grew up with a love for cooking; and by cooking I mean food. We are trained to love any activity that gets us food. Chris can cook pasta, curry, lentils, rice, tomato sauce and probably a lot more that he just doesn’t want us to know because then we’d make him make it himself. He picks it up so easy, and he loves it. Even if we are making a dish, I can ask him to wash the tomatoes for me, to add the salt and pepper to the pan, to stir/mix, to grate the cheese and turn the heat up or down. In the last 5 years, and especially 2015, we have seen an all time high in utilising the pool of potential which is people on the spectrum.

In the US: An Albany restaurant and tavern has opened doors and opportunities for a local teen with autism. At the Orchard Tavern in Albany, they’ve taken on board 13 year old Jonathon Wade who was diagnosed with autism and Tourette’s syndrome. Jonathon is nonverbal, he communicates through iTouch, a program. Once a week, along with his aide, he goes to the tavern and folds boxes; he folds them, spins them, and stacks them. Jon refused payment from the Tavern, instead he asks for pasta with butter and a side of sauce. Jon sounds similar to Chris. I just want to point out how brave the parent are in situations like these. I mean the fear of leaving Chris anywhere for any amount of time is crippling, but its also depriving him of experience that he could have had. Sometimes, in life with autism, the line between selfishness and selflessness is blurred big time. He is so much more capable than we give him credit for, and he can do so much that we just end up doing for him. I hope that one day a member of his community will present him with the opportunities being provided to adults with autism all over the world. I hope that they see his capabilities, his potential and offer him employment.

In Cyprus: A young boy with autism, called Stephanos, has been the talk of the island. Stephanos has been taking piano lessons over the last year and a half and has make some amazing progress. He is the first person on the spectrum to undertake musical exams. His piano teacher calls him disciplined, cooperative and hard-working. He can follow instructions and he is a perfectionist, he doesn’t stop until it’s perfect.  I took piano lessons for years and years. I remember my piano teachers with so much love, they always asked about him and never judged. My first teacher, Mrs Rea, was the first one to mention to me that music may help. I remember him sitting on the piano we had at home and making so much noise. I even taught him a couple of notes, but being the rebel he is all he wanted to do was step on the pedals and make a fuss. When I go back home, I try to play and remember the music i was taught. He sits on the couch next to me, mutes the TV and listens until I stop. Sometimes I even get a kiss at the end of it.

There’s no end in the potential we can find all over the world, all we have to do is open our eyes and minds and make the unlikely places likely. There is kindness and love everywhere, unfortunately, you have to remember to look for it.