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Then and now: 2010

I am saying goodbye to my 20s this year and to counteract the selfish need to reflect on the last decade I will be fundraising for the Smile Project by Autism Support Famagusta. Smile is the first and only day care centre for adults with autism in Famagusta, Cyprus.

For more information: Smiling September

To donate please follow this link and use the hashtag #30smiles

Hindsight is an incredible feeling isn’t it? I look back at who I was then and I can see clearly how I got to where I am. My last decade plays like a film in front of my eyes and at centre stage is Christos because there is nothing I am more proud of in life that to be his other half. To live up to his expectations every day, to earn and keep his trust, to walk beside him in life.

It wasn’t always my priority though. Even though he was the driving force behind my decision to move to the UK to study, my teens are a blur for the most part. See,  we all have ways of getting by and mine is that I block out parts of life/the past I don’t want to remember.

I was lost, looking for meaning, love, somewhere to belong and in a constant battle between the need to be selfish and take care of me and feeling guilty for not being selfless. But with the bad there was good and I’ll try to focus on those. Through all the family drama, heartbreak and late nights that consumed my 2010 there was light.

This picture is from Halloween 2010. Because, I don’t have any other pictures of me and my brother that year. It was a selfish year and but looking back, 10 years later, it had to be. There’s a part of my heart that will always be hollow with all the moments of Christo’s life I missed out on before he outgrew us all. But like any family unit, we have to take care of ourselves before we can take care of each other – we just didn’t know back then. Mum took him to a parade in Cyprus and he dressed as Woody from Toy Story, it was one of his favourite animation films. We watched it over and over and over, and knew all the words. I remember him asking to watch it and when Sid would come up he would hide. 

This year? We get to spend the entire day together in Sri Lanka, making memories and cementing our bond. The difference is that this is a selfless year. We have both overcome our individual obstacles and experiences that weighed us down – Christos has moved to a new school and is tackling issues bigger than him or us. He has paved the way for other families of kids and adults with autism to look forward to a future which doesn’t condemn them to sit on the sidelines of a society that doesn’t have money or time to invest in their abilities.

I’m not going to lie and say it’s been smooth sailing because we had a tough day yesterday. I travelled through 5 time zones in 3 days and it took its toll. The repetition of the routine and his need for everything to be the same is exhausting at the best of times. But today, we are both rested, we have a plan and we are back on track. 

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21 and Atypical: Happy Birthday Steph🍾🍰

Stephanos is 21 years old today!

19358841_10154713771921238_1693404057_oJust like his bestie, he won’t be preoccupied with this day. His birthday will serve as a reminder to his family of how far he has come and how many Steph milestones he has reached. A birthday is too typical to be atypical like our boys. Stephanos won’t get excited about presents, or friends coming over for a party. His phone won’t be beeping with Happy Birthday notifications and he won’t feel the social pressure we feel when we reach a certain age.

Stephanos doesn’t live to please social norms, or to meet society’s expectations 27752278_10155332857716238_3880961810554679579_nof what a 21 year old ‘should’ do. As his mother has so beautifully put it “He may not accomplish University, marriage, or having children like in a “ typical ” world but he has been totally loved and supported by family , friends, schooling and society. I am positive if he could speak he would confirm in a verbal manner how blessed he is on this subject. Autism is part of society nowadays and we all do our “ bit” to accept and embrace because after all we are just human. We have all learned that a “ typical” world isn’t always for everyone. Society has its beautiful exceptions and Stephanos is an example”.

Stephanos lives to break the ‘norms’, exceed expectations, inspire and pave the way to a new and more inclusive world. He was the inspiration for so many actions taken by his family that have shaped and given meaning to my life. He inspired our group, the special unit in Ayia Napa, the summer schools for children with autism in our area and eventually the SMILE project. In a world where everyone wants to be an individual, Stephanos is the most inspiring of them all. Because Stephanos has allowed so many others to be themselves, to be individuals and to be exceptions just by being himself.

Happy birthday Steph. Thank you for inspiring my family, for opening doors for us we never thought possible. Thank you for being my brother’s friend.

Stephanos’ birthday closes my 21 and Atypical series (although I will be referring back to it with updates from the boys). So join me in wishing him a very happy birthday.

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Hope in Poo

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

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

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

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

On the 23rd January, a study was published in the Microbiome Journal (here) which claims that Microbiota Transfer Therapy (Fecal microbiota transplant (FMT), also known as a stool transplant, is the process of transplantation of fecal bacteria from a healthy individual into a recipient) alters gut ecosystem and improves gastrointestinal and autism symptoms. The investigation involved 14 days of therapy with oral vancomycin (an antibiotic used to treat a number of bacterial infections) followed by a 12- to 24-hour fast (clear liquids only) with a bowel cleanse using MoviPrep (laxatives). On day 16, to repopulate gut microbiota (the ecological community of commensal, symbiotic and pathogenic microorganisms that literally share our body space), a high initial dose of standardized human gut microbiota (SHGM) was given either orally or rectally for 2 days followed by daily, lower maintenance oral doses of SHGM coupled with a stomach-acid suppressant for 7 to 8 weeks. The stomach-acid suppressant was used to increase survival of SHGM through the stomach. The children were followed for an additional 8 weeks after treatment ended.

What?

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

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

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

“When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly. The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both are very similar to morphine, a highly addictive drug.”

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

Hope.

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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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Stay awake for this September

It’s nearly September, and this means one thing – school.

Christos enjoys school. Obviously, we have had incidents involving bloodshed and tears but he has been good for most of the experience. I don’t really remember the routine we all had getting up in the mornings and getting ready for school. When it was just me, my mum would do the mornings as she had to go to work and dad worked late. When Chris came along the whole house was up. We would wake up begrudgingly and have tea, I would brush my teeth and wash my face, get dressed and then wait. I remember screaming, i remember clothes being thrown around, i remember socks thrown in the bin (the Sock Wars).

They need to be put on perfectly, if not you start again. If you touch the wrong spot, or accidentally stroke his ankle, toe at any point you have to start again. If you tickle him or give him an inadvertent ‘Lets go’ pat, you start again. If you don’t start at the right end, if both sides aren’t moving up at the same pace, if its too high or too low, you start again, you start again, you start again. No loose ends, no marks, no holes otherwise you start again. Even if its not visible, is it a new pair? Are you sure they’re a pair? Start again, just in case. Then come the shoes. Something’s not right; is it the shoes or the socks? Take everything off and start again.

I can’t help but laugh thinking about it now. But let me assure you, we were not laughing at the time. I imagine it took months/years for my parents to teach him how to dress himself. I think of all the mums and dads out there trying to figure out how to make the nursery-to-school transition, teaching their children how to dress themselves. I don’t remember what his first ever day at school was like, i was a teenager – I wouldn’t remember where i went to school if my mum didn’t drive me there every morning. I remember general memories of nursery, and the special unit at regular school. I remember visiting, spending days there, observing, picking him up and being so proud of him. I will have to talk to mum and dad and write separately about that.

The point of this post is clothes.

schoolMarks & Spencer has launched a uniform range to help children with Autism, called ‘Easy Dressing’. It covers ages 2 to 16 and has been developed with the help of the National Autistic Society. Some of the adaptations to the ‘regular’ uniform include the replacement of buttons on the t-shirt with Velcro, and trousers being pull-ups instead. This will eliminate a good portion of the morning stress for both the parent and the child (and the siblings). This is not to say that they shouldn’t learn how to do buttons or laces but it means that that tricky first year will run a tad smoother, and once they tackle the change in routine and the woes of school, they can do anything.

I’m so excited for this I might pop down to M&S and have a closer look. It’s so great to have a household name designing a line just for the spectrum. It means that when parents go shopping and their kids ask why they aren’t shopping in that section or why that kid gets pull up trousers, the parent is given the opportunity to have the ‘talk’.

An estimated 120,000 children who are on the spectrum will be joining the school system this September. Every child’s first day is overwhelming, but if your kid has the ability to make someone else’s school experience better, or even tolerable, wouldn’t you want to teach them how? Think a year, 10 or 30 years from now, when people talk about school kids helping their ‘other’ classmates, when they commend them for being inclusive, when the ‘other’ kids grow up and look back at their school experience and they remember that kid that picked them up when they were down, asked them to prom, invited them to parties – don’t you want to be the parent who says ‘Yeah, that’s my kid.’ ?