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21 and Atypical: More than meets the eye

Autism traits are not immediately visible all the time. It may take a while to notice the stimming, the echolalia or the sensory deprivation. For decades we have been trying to be as mainstream as possible, but the tables are turning now and our uniqueness is being celebrated. People are telling their stories and we are telling Christos and Stephanos’ stories with the hope being that you look a bit closer, stare a bit less and learn a bit more next time you meet a family on the spectrum. 

Christos and Stephanos are just 2 neurodiverse adults. They communicate through PECS or simple sentences, they reach milestones at their own pace, they love, laugh and feel the same as you. They are a bit more sensitive to light or noise and may come to a conclusion a different way but they are an equal part of ‘your’ world. This society we have conjured up, with its timeframes, standards and expectations is in constant motion and it is up to us to make sure no one gets left behind just because they don’t fit into a make-believe box. The perpetual need to fit in is what makes up most of the worries autism families have. Will he fit in? Will she support herself? What if they get lost? Will they find their way? Who will be there when we’re gone? The therapies they undergo are for their own quality of life, but the social conditioning they go through – no flapping, no screaming, no stimming etc – comes from fear of being different. It stems from the desperation of wondering what society will do to them if we aren’t there.

Then, they do something amazing and we forget all about society’s fictional rules and its illusions of greatness. Because we witness greatness every day. Our kids are living proof that just because someone said it was impossible doesn’t mean it is. That just because they didn’t speak until they were 8 doesn’t mean they don’t understand what we say. They stomp all over misconceptions and create worlds that work on inspiration, love and growth. We see this every day with our kids but we spend so long worrying and sheltering them that we forget how intelligent they are and that they have been watching us and learning for years while we were too busy talking. 

thumbnail_8C5CE67D-701A-4313-916B-8E79ACC208CDStephanos’ mum remembers a cruise trip to the Greek Islands with all 6 kids. “On the second day we were all upstairs playing cards and Steph was stimming around us, in our line of vision. There were 6 pair of eyes focused on playing cards but also watching Steph. At some point, in a split second, he was gone. We lost him. Steph’s verbal abilities at that age were limited but he could say “toilet” and “help”. Immediately, the 6 of us had spread out on both sides of the ship, on all the floors, in the lifts and asking people if they had seen him. Finally, some restaurant guests who knew us from Ayia Napa said they had seen him in the lift going down. We went to our floor immediately and found him in the loo. He used the lift, went to the correct floor and corridor and knocked on his brother’s room door which was different to our own! What is amazing to me is that he knew our room was empty and so knocked on his brother’s door instead.” It may seem menial to you, going to the loo when you need to, but it was a milestone for Stephanos. It was an eye-opener for the family, and a reminder that just because they are overprotective and Stephanos doesn’t speak  it doesn’t mean that he is not fully aware of his surroundings or capable to make rational decisions to fit his needs.

Last year, when Christos and I were travelling back from Sri Lanka we were sat on 29746571_10156190751480030_515778963_othe plane repeating his schedule and what times he would eat what. So we’re cuddling under the blankets talking about pasta when I realised I had to explain time zones to my brother who is obsessed with time. IMAGINE, trying to explain time zones to someone with only numbers and the words – dad, mum, Christos, Theodora, airplane, and (obviously) pasta.  I showed him the time in Colombo and said this is dad, the time in Doha which is where Christos and Theodora are going, and the time in Cyprus where mum is. Then explained that the airplane would take off and land in between Colombo and Cyprus at Doha. He was staring at the phone and me while I’m making grand gestures and airplane noises and showing him numbers. I wasn’t sure he got it, I underestimated him. Then we got to Doha and he asked me to change the time on my phone to the local time, for which he had done the math in his head, and did the same when we landed in Cyprus. Now, he has a globe in his room and can point to where we all are and where we’re going next. 

We’ve seen these boys grow, learn and make progress in front of our eyes. Yet, somehow these false thresholds set by our communities seep into our subconscious and make us forget how extraordinarily ordinary they can be. They quickly catch us by surprise, always a step ahead, whether it’s giving us directions or using words we didn’t even know they knew and remind us to not stereotype but to learn about the talents our kids have and to stop thinking there’s a limit to their potential.

Just because a computer is not running Windows doesn’t mean that it’s broken. Not all the features of atypical human operating systems are bugs” – Neurotribes Read more about Autism Advantages.

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21 and Atypical: Popping to the shops

In 2018 Sainsbury’s launched a new trial to help enhance the shopping experience for customers with hidden disabilities. The trial enables customers with hidden disabilities to collect a lanyard which indicates to colleagues that extra support is needed. The scheme helps those with hidden disabilities, such as autism, dementia, visual or hearing impairment by alerting staff that extra support may be needed while shopping. Lanyards are available to collect for free and are for each customer to keep so they can wear it every time they come into store! Not all Sainsbury’s stores have implemented the initiative yet. Sainsbury’s is the first supermarket to test the initiative, following Gatwick Airport’s successful launch and, by using the same sunflower lanyards as Gatwick and Heathrow Airport, Sainsbury’s sets an example for other retailers to follow.

In Shopping with Autism I described how, before Christos started school and was able to communicate with us better through PECS, going shopping with him was a nightmare. It was like walking into a living breathing nightmare. 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 after every trip – and there were a lot of trips. 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 literally 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 aisle 4 was supposed to be in aisle 12, he knew and he would fix it. Now? It’s one of his favourite errands. 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. 9 times out of 10, Christos will jump at the chance to go to the shop; big or small it doesn’t matter! He will pick everything and stand over my mum and shout and order her around until everything is unpacked and stored back home. Now, he has the skills to shop for himself. This growth, this maturity and his development is a testament to my parents’ unwavering will to prepare him for the trial and tribulations of every day life.

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Stephanos is not interested nor does he get involved in the shopping aspect of daily life.  He knows and trusts his family to provide him with food stuffs, he is adaptable in brand names and is happy with to have his small juice, ice cream or chocolate and let everyone else deal with the hassle of a supermarket. He doesn’t go to the shops and will not get involved unless he is asked to by his family. When he is asked, he kindly obliges and goes back to his snacks. Whereas, Christos will make you do it all his way. Stephanos’ shopping routine took roots when he, his dad and brother took him to the supermarket with and got him a juice, a chocolate or an ice cream. This simple action, possible done to distract from a tantrum, triggered a routine which he follows when he does participate in a shopping trip. The brands of juice, chocolate or ice cream are not always the same  but he always picks out the three items mentioned above. But, just like his pal, his early encounters with big markets, the sounds, smells, people, intrusion of private space would trigger him when he was younger. At 12 years old, Stephanos had a huge meltdown in a shop in the UK. His mum remembers it as a huge episode including self-injury and the worst she had had to deal with up until that time. Even though the family don’t usually take him to big markets so as to spare him the angst, when he does join he is much better equipped to deal with a mood, or someone clearing their throat. While he may get a bit upset and start stimming, overall he is happy with his treats. I mean, I order everything online just so I can avoid these places, why should our boys feel any different?

The reason we collate and write about these stories is to give you an insight into autism daily life. It’s not always easy but it’s not always difficult either! These boys have gone from kicking and screaming to young adults who know how to help their parents, how to negotiate and take a step back when it all becomes too overwhelming. Christos and Stephanos’ stories are being told so that next time, when you see a parent desperately trying to get their child off the floor, or a kid making sure all the water bottles are facing the same way you may see a bit more than what’s on the surface. You may see the need to help make this world more autism-friendly and you may remember that milestones are different for all of us. You might remember these stories and realise how this was a millionstone for both of them.

My brother is a controlling shopper and Stephanos would just let him get on with it.  When you see them and spend time with them you always get the impression that the boys have a full understanding of each other and respect each other’s character, boundaries and behaviours.

#21andatypical

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The beach at Christmas

We are in Sri Lanka again this year for Christmas. Christos has not joined us but we spend 90% of the time imagining he was here, talking about what he would be doing (and eating) if he was and missing him so so much. Everywhere we go we are asked about him. The people of Amaya Lake were enamoured by him and are looking forward to seeing him again next year.

You may remember that last year we were alone on Boxing Day and how proud I was/am of my gentle giant. Well, this year my dad and I are in Kandy and Christos is spending Christmas in Cyprus absolutely surrounded and crowded with people who love him. When I spoke to him yesterday he was having his tea, completely dazed with happiness and reminding me that I need to go back on 28th because he’s waiting.

Every year, on this day, I say a humble thank you. On this day, I remember all those who weren’t as lucky as I was; those who were lost, who lost people, always remembering and paying tribute to the victims of the tsunami of 2004. I never take for granted how lucky my family was that day to have escaped without a loss. When I look at the Indian Ocean I am reminded of the fear it caused on 26th December 2004 and it can never seem the same again. I am reminded that that’s how quickly life can change.

This year has been good to us. Next year will be a new adventure. With Christos turning 21, we are exploring new options for his day to day life. I’m hoping to share with you later in the year how we tackle this new milestone. No doubt, it will be with an army of autism families by our side. This year has reminded me to never take anything for granted. One second I’m watching Frazier, next second my mum is telling me how her car is trashed and how narrowly she escaped. That’s how quickly life can change.

This year, on 23rd December, Indonesia was struck by another tsunami. The death toll so far is 429. 16,082 people in tsunami-affected regions were confirmed as displaced. It is expected that more buildings are at risk of collapse or being hit by new waves as the volcano is still active. A concentrated death toll of 106 has been confirmed at Java’s Tanjung Lesung beach resort. A pop band was hosting a party on the beach when they were swept by Saturday’s tsunami. That’s how quickly life can change.

Yesterday, we were at a gala dinner, opening presents, eating too much, drinking even more, enjoying and celebrating. Today, is a reminder to give back. Remember, honour, be generous and, most of all, be kind. Love who you love and let others love you. Appreciate, respect and take nothing for granted. That’s the holiday spirit.

Happy hols my kindred spirits ♥️

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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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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.