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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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Snowman

My Christos went to the mountains.

He didn’t play, or feel it, or build a snowman. He posed for this picture and sat eating his favourite Lays Salt & Vinegar crisps and his favourite Lipton Lemon Iced Tea.

If he could talk, he would tell his mum that he is having a great time. That he is grateful she takes him on day trips and spends her day making this daily/weekly/monthly schedules. He would say how happy he is for letting him sit in the front seat and take complete control of the radio, and say sorry for shouting at her when she tries to sing to her favourite songs or tries to turn it down; it’s just how it sounds. Instead, he gives her a big bear hug, and dances by shaking his head, waving his hands and trying to sing.

The mountain air, the white scenery was beautiful and Christos decided to enjoy it in his own way. Not by running around in the snow and ruining it. It fit perfectly with his Car Routine certain voices, certain notes, a certain volume pleases his sensory overload. Instead of hearing the rushing of cars on the highway, the nooks and cracks of the car, conversations he cannot take part in, he prefers to have his songs on loud and enjoy them that way.

For that short time he hears one thing, he sees only one thing.

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A walk

Chris is in the middle of his ‘Dad Routine‘, he loves walks by the sea, on a sunny day, with daddy.

If he could talk, he would tell his dad that he is having a great time; instead, he shows him with the shaking of his head, and waving of his hands, the excited laugh and his hugs. The fresh air, the sounds, it all helps with sensory overload and sensory sensitivity for your kids; if they are deprived the stimuli of a walk and the sea are endless. If they are overloaded, like Christos, the exercise helps burn off energy, it relaxes the mind and makes him smile. He finds it easier to express his state of mind, his happiness and excitement.

If he could talk he would tell his dad how exciting it is to take that walk – from our house, down that long road, past all the places he knows so well, to the roundabout, past the Aquarium, towards the small church and down to the beach.  The hard pavement turns into dirt, an uneven walk through the nature, with sounds changing from car engines to the rustling of the tree leaves, the colours come alive, the stones, the sand lead to this place. He would explain to his dad how soothing the breeze is to his sensitive, overloaded skin and how the salty smell of the sea has become something that he associates with home. It leads to this place, a scenery of neverending blue pleases his sight, rests his tires eyes which are overloaded every day. The constant, steady movement of the water sends off a vibe that relaxes his mind, and the resounding sound blocks out all the unnecessary sounds from his sensitive ears. For that short time he hears one thing, he sees only one thing.

Happy Sunday.

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Preach & Teach

A voice mail message has come to light where school staff, in Matravers School in Westbury, asked a mother to keep her autistic son at home during an Ofsted inspection. The school suggested that her son took an “authorised” absence.

This happens in schools every day, this isn’t just about Autism, or Downs, or dyslexia, or anything specific – it’s about children being targeted and scarred – not just by children but by members of staff as well. How can we expect an inclusive society, an educated, compassionate world if we preach without teaching?

Another parent, said his 15-year-old son, who has dyslexia, was told by a teacher that his lessons would be swapped during the inspection “because they didn’t want any disruption in classes”.

A couple of months ago a teacher said “I was told to ignore a child’s autism to keep fees coming in”.

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Two severely autistic boys’ parents threatened legal action against a school, claiming they were shut in a room for hours each day. The boys, aged 12 and 14 were pupils at Abbey Hill School in Stoke-on-Trent. They were kept in a cupboard-sized calm room; the room in the picture. The door was not locked, yet it was closed and there was no handle on the inside. We’ve talked about sensory overload or deprivation and there are certain environments that facilitate this and the use of seclusion and ‘calm rooms’ are recognised. They are positive tools to use to assist autistic children, but how does a cupboard with two sleeping bags constitute a calm room? A room with no escape? Or just a room to shove people in when you can’t be bothered to deal with them? Incident reports detail how the boys charged at the door and tried kicking the door handle until it broke. Incident reports about a child trying to get out of a room, which is supposedly designed for their benefit. The log shows him spending the majority of his school day in the room.

A Kansas community is was recently grieving the loss of a 16-year-old autistic boy. Maxwell Webb took his own life. He didn’t leave a note; he was bullied. His father said the mistreatment wasn’t addressed by the school’s administration and was the major factor out of several that led to Maxwell’s death.

An Ohio family says that their 15-year-old boy with learning disabilities was bullied and misled into stripping off and subsequently getting covered in feces and urine. The teen thought he was participating in the ALS Ice Bucket Challenge by his peers.

Listen. Learn. Grow. Accept.

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Sibling Week

There was a hashtag trending a few weeks ago celebrating Autism #SiblingWeek and I had messages asking me how i felt and how I coped as an Autism sibling.1456685_10152043682305030_1431061625_n

In my head, it’s unfair to blame the parents if a sibling is struggling to understand Autism – the parents have enough to deal with. And yes, they are important and they need to seek out ways to get professional help, or books, or alone time. They’re only human and they have their own emotions and their own process to go through; life just dealt them a wild card. I believe, the doctor that gives the diagnosis should also offer advice to parents about their siblings. I haven’t figured out the ins and outs of it yet; but shouldn’t it be a professionals job? They deal with this every day, they know the consequences, they know the shock that drowns out the reality you had been living in until that moment. Even more so, shouldn’t the school be aware of ways to help so they can be offrered?

Chris and I were born 8 years apart. Raising a child, in general, demands extraordinary things from parents, and the family as a whole. When one of them has Autism, those demands are the only thing you have time for. The time you invest in the well-being of that child, you know you will not regret when you see their progress. Siblings though, older or younger, remain silent bystanders. Their silence resonates in their misbehaving at school, in their picking up of bad habits and hanging out with questionable friends. The way the ‘Others’ are affected can take as many forms as can Autism.

416800_10150752443010030_1110641324_nI don’t know whether it’s harder when they are older – so the attention is shifted completely from them – or when they’re younger – so it’s all they know and might not get enough attention.  Your life has changed, the balance has shifted, your parents only talk about Autism, and you can only trace it back to one person. It causes resentment, whether you are old or young, the feeling is there. My mum told me that when Christos was born i used to climb into bed and drink milk from the bottle. I was 8 years old. I was at school. I had friends and I was drinking milk from a bottle and asking my mum to tuck me in; seriously. When he was diagnosed I started acting out at school, mum said – original. Thinking back on it now, its embarrassing, but that’s what happens to children.

As a result of no proper support system being put in place for the Others, there is tension that builds up between the needs of the child with Autism and those of the Others. I used to get annoyed when he played with my toys, when he watched my video tapes because he broke everything; absolutely everything. What i have found, in reading about this and listening to stories, is that there are many ways this frustration can manifest and without the right guidance it can get out of control. The obvious side note here being that where Autism isn’t dealt with early and effectively we get relationships that break down, or never even form to begin with.

In my experience, personally, as well as my discussions with other Others, the great majority has to deal with jealousy for the first couple of years but then there’s this power that comes in. Maybe its from reading, maybe its from witnessing how strong your parents are, maybe its from seeing how someone so small can be so fierce, how someone who cannot speak 419409_10150751639425030_721113893_ncan progress right in front of your eyes. I’m not sure what it is, or where it comes from, but it does and it makes you become who you are. You grow up, you cope, you become passionate, understanding, experienced; you just learn that life isn’t about coping, it’s about taking every day and making it worthwhile, it’s about excellence, because someone is doing that right there, in front of your eyes.

The bright side of being an Other is that we learn, whether alone or with help, to manage these demands and behaviours which makes our childhood/adulthood easier. It teaches us skills we wouldn’t otherwise have or learn at school. We become effective and resilient adults; because being an Other doesn’t end with childhood. It’s a bond we don’t have words for, it’s a relationship that matures and grows stronger over the years.

The concerns of toys and attention fade and as an adult we start thinking of the future and develop a sense of responsibility that makes it difficult for us to leave home and begin an independent life.

Missing home was isn’t an issue, but missing Chris is unbearable. I can text, whatsapp, call my parents, my friends, my family; but my brother I can’t. He doesn’t like the telephone, or talking on skype for too long and when we do he just tells me what he wants to eat. I consider myself lucky if I get the same few words out of him; always ‘Hello, I love you’ and when i ask how he is its usually followed by a kiss and him running away.

I can’t ask my brother how he is, can you imagine that?

It breaks my heart when they call and tell me he asks for me, and asks when he can see me. There’s this weight on my shoulders that I’ve put there that will not be lifted until i know i can give him everything he wants. He doesn’t ask for much, he just wants his music, his food and the pool; but its doesn’t matter, because if he wakes up one morning and asks for something, i want to be able to give it to him. No one expects this from me, and no one has ever spoken to me about the day I will be his carer but it’s something i have been preparing for since i was 17.

That’s the end-game, that’s the dream.

That’s what being an Other does to you, it drives you and it makes you better. So when you meet someone with Autism, take a moment to take it in, see beyond the Autism and realise that they are inspiring, they can motivate greatness without ever saying a word.

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PS: Love?

Been watching ‘The Undateables’. For those of you who don’t know, the show it’s about people living with challenging conditions who are often considered ‘undateable’ – this series meets a few and follows their attempts to find love.

It’s a great show to see what dates would be like without the social expectations of ‘playing hard to get’, ‘saying the right thing’, ‘not being too keen’, rating people from 1-10. Dates are fun, they’re honest and the people on the show don’t play games. They are looking for love, companionship and happiness in it’s purest form. They’re not scared to say ‘i like you’, they’re not under pressure to look, sound or act perfect – they are real. The show aims to explore a side of dating that most people don’t even consider. When you see a person with Downs Syndrome, Tourettes, Autism, Aspergers etc the first thing you feel is pity, sympathy, maybe a bit uncomfortable because they are ‘different’. But who defines ‘different’ other than yourself?

Open up your world.

Everyone is looking for a companion – whether its a man, woman, friend, partner. We look for intimacy because love or affection at its purest is loving yourself first – which then enables you to love, care about another the way people are meant to be loved; completely. Without stereotypes, without social expectations, without games.

love‘Challenging conditions’ can mean anything. What makes a disability challenging, more than any other factor, is the way it is perceived. Autism is perceived as difficult, unsociable, untamable; and at its worst that is sadly the truth. But what makes it get to its worst is the way it it’s treated by society. Why do people with disabilities have to be boxed up and labelled ‘undateable’? Why do we have separate dating sites or agencies? Yes, its difficult, and if you don’t grow up with it or around it it can be daunting. But don’t you think that if education regarding disabilities and their challenges was available at school we would all be more accepting to dating or befriending the ‘undateables’? Or even better, wouldn’t it mean that people with disabilities would not find it challenging to find companionship?

When living with Autism, love is something that you never think your kid will miss; because you love them so unconditionally. But then you’re driving and he sees a girl walking down the street and he waves at her; it’s so unexpected, it’s so out of character. Mum and I laughed so loud when Chris did that one time. However, it reminds you that love – that feeling that we all need, seek, treasure – is in all of us. Whether we can express it or not, we want love in our lives. Everyone who has Autism in their life has thought about how their kid might never have that feeling, might never find someone to love, live with and have a family with. It hurts. It’s a feeling that you wouldn’t wish on anyone.

That’s why we raise awareness. Not for likes, not for views. We do it for the future, we do it for the chance to find love. Whether love comes in the form of acceptance or in the form of romance we seek it, we need it for our children.

Can you imagine your life without the possibility of love? Learn about Autism – love it.

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2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Crunchy numbersFeatured image

A San Francisco cable car holds 60 people. This blog was viewed about 1,600 times in 2014. If it were a cable car, it would take about 27 trips to carry that many people.

There were 77 pictures uploaded; that’s about a picture per week.

The busiest day of the year was September 30th with 65 views. The most popular post that day was Mr Moustache.

Posting Patterns

884456_1403665136540932_166050827_oAttractions in 2014

How did they find us?/home/wpcom/public_html/wp-content/blogs.dir/46b/55851256/files/2014/12/img_5885.jpg

The top referring sites in 2014 were:

facebook.com

twitter.com

linkedin.com

flipboard.com

countries

Happy new year all, make it count.

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