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Under the Sea

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

Naturally, we had ALL OF THEM.

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

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

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

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

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

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

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

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

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Dog Treats, Ice Cube and Rutgers University for Autism

What is Silver Linings?

I go to Silver Linings to watch for any balloons we can reach and move to our world, and here are the ones I have been following in the last couple of months:

  1. Finley’s Barkery in Minnesota “embraces neurodiversity and empowers people to do what they love. 80-90% of adults with Autism and other developmental disabilities are unemployed or underemployed. Finley’s Barkery set out to change that statistic. By utilizing one’s unique strengths, our team takes pride in their roles from handcrafting the treats, to marketing and sales.”
  2. McDonald’s in Indianapolis: Leif, is 7 years old and has autism. His mum explains that “A classmate brought one of the toys to school and Leif saw it and spent the next two weeks hardly talking about anything else with us. He gets really fixated on things and creates stories around toys.” So, like any mum, they went to Mc Donalds and asked for the toy. Unfortunately, the toy had been sold out. *Enter Awareness*TaQualliyia, a 16-year-old employee, overheard that encounter spoke to her manager about the situation. With the manager’s approval, TaQualliyia spent 15 minutes dismantling the display behind the counter as Kandel and her family were eating lunch to get the toys for Leif. Read the story here.
  3. Results of a new study have revealed that brain scans might help predict autism in babies before symptoms appear. “We see an increased rate of growth in the outer surface of the brain, the folds, the sort of waviness of the surface that’s followed by an overgrowth of the brain in the second year,” says senior study author Joseph Piven, M.D., of the University of North Carolina-Chapel Hill. The overgrowth of the brain they observed coincided with autism-related behaviors that start to emerge when the child reaches their second year, the researchers said. Read the story here.
  4. Represent, a social merchandising and marketing platform that enables influencers to create and sell custom apparel, announced their collaboration with Ice Cube in launching a limited edition apparel campaign to benefit Autism Speaks. Ice Cube is very vocal about his autism family. “I’m proud to support the great work that Autism Speaks does, a cause that is so important to me,” said Ice Cube. “My goal through this campaign is to not only help raise awareness but to also support this great organization’s efforts in promoting solutions for the needs of individuals with autism and their families.
    Ice Cube’s design is available on a variety of products for men and women, starting at $24.99, available at Represent.com/IceCube.
  5. In Oklahoma: Children on the spectrum were able to practice their pre-flight skills and how to be an airline passenger through the Wings for Autism program. The free event, which was held Will Rogers World Airport for families, brought children from across the state to participate in the program and had a waiting list. Watch the video here. Wings for Autism will be held in Allentown, PA May 6, 2017, Fresno, CA May 13, 2017, Appleton, WI – May 13, 2017, Denver, CO – May 13, 2017.
  6. Special Books by Special Kids: Founder and teacher, Chris Ulmer, began Special Books by Special Kids (SBSK) to share the unique talents and incredible personalities of the students in his special education classroom.
    Special Books by Special Kids is leading a global acceptance movement that brings awareness to the joys, needs, and struggles of the special needs community and promotes the acceptance and celebration of neurodiverse individuals by all. You can watch a beautiful video of Jon teaching his classmates about planets here.
  7. Legoland Park, Florida: Since 2016, Legoland has been working with Autism Speaks to make its amusement parks more friendly for guests on the autism spectrum. The resort in Winter Haven, Florida, explained some of the features it has added since then including “quiet rooms” and a pass specifically for guests with autism who may have difficulty waiting in line in a press release. Disneyland Paris also offers this.
  8. Speaking of Disney, as always. Disney, in association with Amaze announced an Autism-Friendly Performance of Aladdin – The Musical will be staged in Melbourne. This special performance will be held at Her Majesty’s Theatre on 12th August, 1.30pm. Aladdin was one of our favourite Disney films growing up.
    You can watch the video here.
  9. Stem cells research: This is the story of Gracie. Gracie is 7 years old and was one of 25 children who took part in the first-of-its-kind study at Duke University in Durham, North Carolina. The study’s goal was to assess whether a transfusion of the children’s own umbilical cord blood containing rare stem cells could help treat their autism.
    The results? More than two-thirds of the children showed reported improvements. A larger second trial is underway, one its researchers hope will lead to long-term treatment for children with autism.
  10. Autism Involves Me: Cathy Lomond is the owner of Hotel Port Aux Basques in Port Aux Basques, Nfld. Cathy, working with Autism Involves Me, decided to create a space where those with autism disorder spectrum (ADS) can relax and enjoy their vacation. “The hotel has a lounge with a calming mural, a swing, a climbing wall and a sensory boat to create a comfortable environment for children with autism. There’s also a kids’ menu available with pictures of the food items, which can help foster independence for children who may have trouble speaking.”
  11. 9 million donation to open Britain’s first international autism centre: The money will be donated by Phones 4U billionaire John Caudwell.  The research and therapy centre will be based at Keele University and will cost £18 million. It will specialise in autism. “I have been deeply affected by the families I’ve met whose lives have been devastated by autism, and rebuilt thanks to the support of the charity. I am proud to support what is set to be a landmark development in the provision of services for the millions of people who are affected by autism on a daily basis.”The Caudwell International Children’s Centre (CICC) will include state-of-the-art assessment suites, a sensory garden to help children interact with nature, family training suites, training kitchens for cooking classes to encourage a healthy diet. It looks beautiful and it stand for something you cannot describe, only feel.
  12. Ambitious About Autism: The Ambitious College has opened its doors at Pears Campus at College of Haringey, Enfield and North East London and West London College. Ambitious College was created to give everyone the opportunity to lead a fulfilling, happy and rewarding life; and this includes young people with autism.“Our learners are at the heart of everything we do, their curriculum is highly personalised to help them achieve their goals.” Read more about it here. You know that I have worked with Ambitious on various different projects, therefore this College is very very close to my hear and I cannot wait to watch it succeed and become part of this amazing opportunity provided to the autism community.
  13. Have you stopped reading yet?
  14. Maryborough Correctional Centre: A pilot program in Queensland has had overwhelming success with inmates training special needs assistance dogs. Unexpected? Over 10 months, the prisoners taught the dogs complex tasks including wheelchair work, opening doors, picking up dropped items and turning on lights, all to prepare them for life with a special needs child. Smart Pups CEO, Patricia McAlister, said the pilot program had been very successful as the increasing demand for trained dogs was “huge” and outweighed the number of assistance dogs available.
  15. Rutgers Center for Adult Autism Services (RCAAS), based in Rutgers University, will “..feature a comprehensive program that is designed to support adults ages 21 to 60 with mild to moderate ASD through a wide range of services specifically tailored to meet their individual needs.” Will offer up to 60 adults with autism, and who live off campus, university jobs supported by clinical staff and graduate students. The second phase of the center will offer a pilot residential program for 20 adults with autism who will work on campus and live alongside Rutgers graduate students in an apartment-style residence.

I chose to end with Rutgers because this time last year we got emails from Rutgers University wishing Christo a happy birthday as part of #Project324. Avramis and Florentina were the 2 friends I asked to distribute the cards and so Rutgers because a familiar name during those months. I’ve copied some below because reading them makes me happy and I hope that reading them will prove to you that awareness is everything.

I hope that with all these new initiatives and stories circulating in the media, not a day will go past without you hearing the A word.

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Hope in Disney

553829_10150760901390030_1000986510_nI watched the Beauty and the Beast trailer on TV last night and I felt so emotional. People will say its cliche, or call me a princess because I love Disney films. I watched them all, every day, I know all the songs, the punchlines. It’s a world away from home. It’s how Christos and I bonded when we had nothing else in common.

Facebook drowned me in memory pictures this morning and reminded me that 5 years ago was the first time we took Chris to Disneyland Paris. I had been there the year before to scope it out. I was 22, he was 13 and my mum was exhausted. I had very little patience back then so shout out to my mum for being a saint and dealing with an overgrown teenager and an autistic son all on her own.

He was overwhelmed when we walked in. He didn’t know what was coming, what to expect, what to listen to or see first. The crowds were overbearing and we held on to him tight. By day two he was acting like a local. We were getting off the shuttle one morning and he fell. Suddenly in our heads alarm bells are ringing, the National Guard is summoned. You can see from the pictures that he was a big 13-year-old. He fell, but he didn’t cry. He limped because he still wanted to go to the park, however, he kept wanting to sit down. So, we went to the medical centre and we waited to be seen; after about an hour they just said it needs rest, so we sighed with relief, got him a wheelchair and used it as an excuse to give him anything he wanted. Every day at 5pm he wanted to go watch the parade, he identified his favourite rides, which we visited every day, his favourite crisps and the best ice cream. I won’t repeat myself, you can read about our Disneyland Adventures (volume 2 in 2015) in the  Mickeyminniegoofydonaldydaisypluto series of posts.

This month’s hope is also found in Disney.

Growing up with a brother that didn’t respond to his name, want to play with you and who broke things or rolled around on the floor in anger left little room for bonding. Don’t get
me wrong, I was connected to him from the day we found out he existed, but he never seemed to feel the same. Back when VCR’s were a thing, we had 2 drawers, a big cabinet and a small cabinet full of tapes. Mums family are all film fanatics, they love to chill out watching something and we have definitely inherited that habit. We would record them when they were on TV and then label and put away for watching later.

Despite his aversion to playing with me, he always joined me for a movie. I would put it on, and it would get his attention. Maybe it was that we all went silent when it started, maybe it was the music, the funny voices or maybe it was how much we laughed and how the atmosphere changed when a Disney song came on. We watched them religiously, nearly every day. On weekends we would watch Mickey Mouse or Donald Duck on TV and then in the evenings we would watch the Hunchback of Notre Dame, Aladdin, Hercules, Toy story, Lion King, Snow White, Sleeping Beauty etc. He picked it up quite fast and soon he knew the scenes off by heart. But when Frodo, Jafar, or Maleficent, or the Evil Queen were making an appearance he would hide behind the couch;  listening, but not looking.

Soon after, he started choosing what we were going to watch, he started fast forwarding the parts he found scary and he made sure each box had the correct tape in it. Cute right? No. He also needed all the stickers and covers to be perfect, which they were not because we used them every day. He wanted us to cut off the worn out bits, but cut them straight, and cut them right otherwise you needed to cut more and more and more until there was no sticker or cover left. He would also watch the whole movie, and then would rewind it and watch it in reverse. And because our VCR was old, some of the tapes got caught and were destroyed. My tapes. My Disney tapes. My escape. My world, the one without autism, the one where I was in control because I knew every word and I could count on all the happy endings.

I’m not bitter. Well, maybe a little bit.

It didn’t stop when DVD’s came out, he still ripped them to shreds, he scratched the discs, he ruined the plastic covers. I remember once, I had cleaned one of the discs with a cloth about 150 times. He would look at it touch it, and hand it back. So after the 151st time, I broke it in half. I was like “There, now it doesn’t matter if it’s clean”. Petty right? A bad sister right? The thing is I never treated him differently as a little brother because of his autism. I’d still deny that I had made him cry when mum would ask, I’d blame all broken stuff on him. I stole his food, he broke everything i owned. We yelled at eachother until we cried and we slapped eachother around a little bit. I’d put my foot in his face or throw my socks at him, and he would keep me up all night repeating words until we were both exhausted. And while this is how neurotypical siblings would bond, it wasn’t the same for us.

428326_10150752441475030_1462595363_nI remember how much I missed him, how my friends’ little brothers were so close to their sisters and how much they looked up to them. When I couldn’t get him to hang out with me, I would put on a Disney tape and put the volume right up. I’d hear the game boy music stop, the rustle of a blanket and tiny footsteps running up the stairs. And he would sit, ask me to apologise, turn the volume down and watch the movie with me.

I see a lot of Disney headlines that remind me of those lazy afternoons singing about a whole new world, or those Friday nights at our nans repeating the same old Lion King jokes with our granpa.

For example, Disney’s hit new musical Aladdin, playing in the West End, has announced its first dedicated Autism-Friendly performance will take place on Tuesday 29 August 2017. Wicked did this last year and The Lion King is staging its first Autism-Friendly performance Sunday 4 June 2017.

You may have heard that ‘Life, Animated’ was nominated for an Oscar this year. ‘Life, Animated’ follows the Suskind family and its unique way of communicating with their son — through Disney animated films. Inside his head, Owen created his own stories where he and Disney sidekicks battle villains who represent bullying, depression and even autism itself. The director has said that “Life, Animated” is a testament to the strength of family, the imagination of childhood and the power of story; “Owen is living a meaningful life and it’s not up to us to decide what that is. I’ve never met anyone more happy and content and open and honest about the world around him.” You can read more about it here and you can download it on iTunes or watch the trailer here.

Disney films don’t always have to be about the princess.

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On the Radar – Spectrum Singles

kids-loveFollowing on from “PS Love?

At the start of April 2015 a mum and daughter made the news. This was because they had just started a unique dating site, created solely for people on the spectrum.
Both mum, Kristen Fitzpatrick, and daughter, Olivia Cantu, are on the spectrum. I mean out of all the useless, creepy dating sites that exist in this world, we needed one that made an actual difference. Instead of relying on shows like “The Undateables”, that matchmake for viewing rather than love, these two women took it upon themselves to create a forum for the spectrum rather than adjusting the spectrum to the society’s forums. The anxiety of dating usually stems from one question, “Do I tell them I am on the Spectrum?”. Do you put it in your profile description? Do you categorise it under hobbies? What do you do with that information? The fear of rejection and the social pressure to fit a lifetime into a single profile, for people to judge you can be unbearable. The problem with the Internet is that you can be anyone. It’s not a space that encourages you to be yourself, its a space that encourages you to pretend to be what you think you should be.

Autisticdating.co.uk says “Autistic people have problems in general when trying to communicate, that is why they need special conditions for dating as well. We completely understand that, having spoken with and gotten expert opinions from many social workers and experts on autism, and we have designed a dating site that will make the entire dating experience much easier on autistic people.

Noble.

Point Number One: ‘Autistic people’ are not all the same – no two people on the spectrum are the same. It will make the dating experience easier on a fraction on people on the Spectrum, not all of them. Furthermore, not only does it generalise it also sheds a negative light on Autism by assuming that all people on the spectrum have communication problems. I tried to sign up for this, it wasn’t exclusive; it didn’t ask me if I was on the spectrum; it didn’t ask anything except it told me the website was over capacity. I wonder how long that has been the case.

A very, very similar site, AutismDating.co.uk says “Anyone who is on the Autism spectrum (or their close family members) all start asking the same question sooner or later; that is the question of love. Will I ever find someone to love who loves me? Will I ever meet that special someone? The answer to that question is a resounding “Yes!” especially if you give Autism Dating Service a try…. We have thousands of open-minded women and men from all over the USA and you could be among them, meeting them, setting up dates and exchanging experiences and details of your life with them, even right now”.

Fair.

Point Number Two: You cannot sign up for this site. Much like its twin, AutsimDating.com targets people with Autism as a whole. The use of the word ‘open-minded’ bugs me a bit too, however once you actually sign up there may well be open minded people to meet. Both these sites were developed by people who are not on the spectrum.

Olivia, 18, got the idea because she was tired of being misunderstood by her “non-autistic friends”, as she calls them. She wanted a place “free of the stigma”, free of the anxiety of being on the spectrum.

Spectrum Singles is a dating site for people enhanced-30499-1427990487-9 (1)on the Autism spectrum, created by people on the Autism spectrum.
Unlike other dating sites, it brings together all people on the spectrum for dating or friendships, but it is also unique in that it is able to acknowledge and integrate a person according to their position on the spectrum. The Spectrum Compatibility Test™ narrows down the prospects to match individual spectrum characteristics with a select group of spectrum compatible matches. imagesFor example, one of the options when registering for this site is that it asks whether you are verbal or non-verbal. This innovative test helps bring together, as best it can, people that share certain attributes with whom it would be easier to communicate and build a relationship or friendship. The test is basically 184 questions long and includes questions about social skills, what makes you uncomfortable, sensory sensitivity or deprivation, sexual preference and many other focus points. The algorithm was created by Kristen and Olivia created the questionnaire. How amazing is that? The test gives you a colour which is associated with your answers, likes and dislikes and then you can browse the site and find other members with the same colour.

There is a YouTube channel which is a series of short funny videos on dating, and tips, for people on the spectrum; you can watch it here. Michael McCreary and Olivia Goudreault, are both on the autism spectrum as well. They also have a Facebook group with articles and funny memes for the members; you can browse this here

Spectrum Singles removes the stigma and anxiety of the Spectrum. It’s basically what the world should be – free, no pressure, no stigma, no pity, no fear.

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Seventeen Candles 

IMG_7432Christos got a cake at his school today.

Chocolate for breakfast? YES,  PLEASE (Christos would say ‘se pakano’ – it sort of means ‘please’ in greek).

He feels happy. He knows it’s his day, but doesn’t quite know why. He waits for the song to finish, he blows out candles but only because he knows he’s supposed to and because he gets cake after. He eats cake for breakfast, who would complain? He sees his family, lets them hug him and opens his presents, he doesn’t really know why except for its been happening for the last 17 years, its routine.

But he does know, that on the 6th May 2020 he will be celebrating this day in Disneyland. Happy Birthday Christo my superhero, my extraordinary brother, my cup of tea, my heart.

On this day, think of people you may know that are on the spectrum and see how they are, say hello, even just a smile to someone you think is weird because they are flapping their hands or skipping or too old for the playground. It’s so important to remove the stigma of Autism, it’s so important that more people feel accepted, loved, understood. On this day, that my heart is filled with love for someone with Autism I think of Elspeth McKendrick.

Elspeth, 16, took her own life because she got an Asperger’s diagnosis. Elspeth felt alone, she felt like she had no one to talk to. Elspeth felt that sharing this with friends would stigmatise her. She thought she would be walking around school with a big blue ‘A’ target on her. Elspeth felt judged, overwhelmed and thought the diagnosis would deprive her of all the experiences she would have as a teen. She did not fail to come to terms with a diagnosis of mild autism, society failed her. We failed her. We cannot provide a universal support system for Autism, one of the fastest growing disabilities in the world.

Learn about Autism, please.

On this day, every day, with all my heart I think of Elspeth McKendrick. I think of Maxwell Webb, I think of Josh, Andrew Young, Faruk Ali. I think of of everyone that has felt alone, everyone that has felt like a victim because they felt like they didn’t fit in, i think of all the families out there who struggle every day with every single thing(even things you don’t think about – Socks, Teeth, DVDsRestaurants).

I think of you, my family thinks of you. We know you.

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Seventeen Candles – Not everyones cup of tea

This is my favourite present.
Now, the fear with the t-shirts is that they will not fit, however, the fear with the cup is that it may never be used. In other posts I spoke about when Christos gets too excited he hides things until he is ready to use them.

When I lived at home we always had our tea in the morning before school, a tea when mum came home from work and then a tea before bed. Christos always has tea in the morning, he always has tea in the afternoon and always has tea before bed. Maybe if he accepts to change his cup to this, I can have tea with him. Maybe he’ll think of me like I think of him. Since we cant text, of Facebook, or have a chat on the phone, maybe that will keep his memory of me there. He had his birthday party on Saturday. The family gathered, they ate, they sang, he blew out candles, he opened presents.

Like I said last year, (One Six)

Chris wont get facebook posts wishing him happy birthday, he won’t get texts, he won’t go out and celebrate with his friends, he won’t ask for money to spend, he won’t ask for expensive presents, he won’t make a big show of opening presents. When I call him to say happy birthday he won’t say thank you, he’ll kind of mumble and then when i say i love you, he’ll say i love you too and continue what he’s doing.

He was happy, and at the end of the day all that matters is that he is happy. A seventeen year-old boy who grew to touch so many lives, who has overcome so many obstacles. A boy who couldn’t communicate with us, who has gone through all kinds of therapies and who now can empathise, sympathise, love, care, talk, joke.

 

    

 

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Seventeen Candles – Normal

 This is the second present Christos will be getting tomorrow.

It’s black and white because Not everything is Black and White.

Because ‘normal’ is not black and white.

Because you, me we are not black and white.

Because Christos is not black and white.

‘Normal’ cannot and will not be defined – ever. ‘Normal’ changes as often as you change your shirt….That’s ‘normal’ now but in a few years who knows what ‘normal’ will be?

I wrote that July 30th 2013. What has changed?

‘Normal’ is hashtagging, ‘normal’ is that Suarez will bite someone every couple of years, ‘normal’ is that Australia will compete in Eurovision 2015, ‘normal’ is hearing about the growing number of refugees from Syria, ‘normal’ is talking about the number of transgender suicides, ‘normal’ is the risk of Ebola, ‘normal’ is a woman running for President of the United States.

Today he is still sixteen.