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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.

 

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#Project324 Team

When my family and I came up with the idea for #Project324 I thought I would never be able to find people in 18 countries, and if I did would they be willing to help? Now that I’ve sent off their thank you presents I’d like to say thank you to each and everyone who took the time to make sure my brother had a beautiful birthday.

Thank you:

Georgia & Sam (Spain & UK): Georgia is my cousin – she did the trial run for the project in Spain and she distributed another 9 cards in London. The lovely Sam translated the text for me in Spanish and together, they gave me so much support and so much courage to keep going and actually follow through with the project. Without you two, this wouldn’t exist.

Amy (Wales & Australia): I met Amy on the LPC course 2 years ago. I gave Amy her cards in March 2016 when we had exams in London – she was leaving the next day to go to Australia, so she took them with her. Throughout the 2 months those cards didn’t leave her bag! Amy was on holiday and even left cards in the aeroplane, Australia and then in Wales when she returned. You are sunshine Amy.

Becky (Dubai): I met Becky on the LPC as well – we had missed each other at induction but bonded over Tax Law. I could not have done this without your support and enthusiasm Bezzo – you are sunshine.

Hannah (UK): Hannah is a friend who used to live in Canterbury. She carried the cards with her in Bristol, Bath and on her regular road trips. You have been a constant support and help, see you soon!

Teresa (Ireland): I lived with Teresa’s sister last year, and met her during that time. Your support has been invaluable – congratulations on graduating and i wish you nothing but goodness for the future.

George (Scotland): George is a friend from Cyprus – he helped distribute the cards in Glasgow, leaving them in parks and trains. You have been so positive throughout this experience, I am grateful forever and promise to repay you in tons of sushi.

Romy & Daniela (Switzerland): These ladies are family friends who jumped at the opportunity to help when one of the countries dropped out and translated the cards to Swiss. They each gave out 9 cards and we got so many responses from Switzerland, e cards and cards through the post. Your willingness to step up and help is so very appreciated.

Avramis, Florentina, Cara (USA): I love these 3 people so much -they know Chris, they’ve known him since he couldn’t speak. Your love and help reminds me how lucky we are to have you in our lives. Some people are forever.

Aamir, Usmaan, Tanvi (Kenya): When it comes to you, words will never enough. I will think of you forever. Usmaan and Tanvi, who i have never met, took the initiative to make my brother a ‘happy birthday‘ video. You put a smile on my family’s face and restored our faith in humanity.

Kimberley (Belgium): I’m so glad I got to share this with you.

Mahmuod (Iraq): We had trouble getting the cards to Iraq, and Mahmuod was kind enough to print them off, cut them up AND distribute them. Your kindness is so moving.

Jonas (Germany): Jonas is just an all round happy person to know – he even translated the cards in German for me. Your positivity is contagious. I hope you succeed in everything you do and end up on an island somewhere with delicious food.

Chantale (Canada): I met Chantale through Autism Canada, she is also an autism sister. She was the first person I bounced the idea off for #Project324 and she jumped on board straight away. I’m so glad I met you, I hope we work together in the future to bring about change for our little brothers.

Chanuki (Sri Lanka): I met Chanuki in in 2006 on holiday in Sri Lanka – 10 years later i can still call on her to help me with a project. That’s the kind of person she is, thank you always, hope to see you on the island soon.

Flora, Maria (Greece): Their positive response was so quick I don’t even remember how it happened – they were so willing to help. You are goddesses.

Pablo (France): France was a last minute choice when cards didn’t arrive to one of the countries. Pablo stepped up immediately to help me with this project. Merci mon pepe!

Emek (Turkey): Emek is one of those people you can depend on, one of those people that will go above and beyond. She was so happy to be a part of #Project324 and even translated the cards to Turkish to make more of an impact. Emek handed out all her cards in 1 day – not only that, but everywhere she went she took time to talk to people and explain the project to them. You are a beautiful person.

Marianna (Ukraine): This beauty translated the cards to Ukrainian for me. She engaged all her colleagues, who also offered to help spread the word and she went to an autism awareness event on the 2nd April and gave them out to the people there are well. You are amazing.

Photini, Zac (Cyprus): I have loved these two people for most of my life. I can’t even begin to describe how powerful your presence is in my life each in your own special, beautiful way. My love for you is endless and forever.

Special shout out to everyone who supported me, asked, listened and shared this with me and people they know. Mum, Dad, aunty Helen, uncle Bambo, Chris, Tash, Malcs, Kat, Ginger, Bob, Nick, Tristan, Maria, Despina, Layla, Sarah, Michali, Demetri, Vantage Mag, ant1wo, Ambitious about Autism, Toni, Nadine, Siobhan, Harmonie, the students in Brussels, the people that wrote in, the people that shared their own stories, the people that picked up that little piece of paper with our story on it.

What more can I ask for when I have friends I can depend on in all corners of the world? Life is so much sweeter because of all of you.

Keep an eye out for your presents in the post 🙂