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Friendship

Friends are a funny concept aren’t they? You meet this stranger and you’re like “You. I want to do random things with you forever. I want to share my life with you. I wanna tell you all the stupid things I think of.”

I have three friends that I have known most of my life, and whom I adore beyond measure. These girls are the girls that cry with me when I talk to them about Christo, they get mad with me when I tell them a member of my family was mistreated, they laugh when I tell them I fell over, and check on me and my family when one of us is unwell.  These are the girls I don’t talk to every day but I would run to if they needed me. I love them with the kind of love you love your own. I love them because they love my family with a love you haven’t experienced before, and vice versa. One of them helped with #Project324 last year (you know its you papaokori). One of them makes me laugh like there’s no tomorrow and is my soulmate.

My point is that these people are embedded into my soul and they love my brother as much as i do. I want to tell you about something extraordinary one of them is accomplishing today. She currently holds 3 Guinness Records:

  1. The Longest time in an abdominal plank position (female) is 3 hours, 31 minutes and 0 seconds
  2. The Longest time in an abdominal plank position (female) with 60pounds on her back is 23 minutes and 20 seconds
  3. Most handstand pushups in 1 minute is 35 pushups in 31 seconds

These 3 records she broke to prove to the world that you can do anything you set your mind to, despite all odds.

Today, 21st July 2017, she is attempting to break another World Guinness Record. This time she’s doing it for a little girl called Stavriana. She will be attempting to break the record of 1206 knuckle push ups to 1300 knuckle push ups in 1 hour.  Stavriana suffers from Cornelia de Lange syndrome and Crohn’s desease. She is only 7 years old. She is the youngest of 5 siblings, all under 18, and is being raised by a single mother. She is in pain every day and the money is being raised to enable her to travel to Israel for an operation that will make life a bit easier for her and her family. The aim is 50,000 euros. You can donate through paypal at https://www.paypal.me/helpstavri

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I could write pages about how inspiring this woman is. But I will never be able to  tell you how she makes me feel. This girl is magic. People around her love her because of how unapologetically she loves people.

She has overcome medical predictions and countless hardships in life. Yet, she is always the one giving. She is always the wise one, the funny one, the one you go to. The brave one.

I know that our town, our island will embrace you and Stavriana today. I know that they will give, and make you proud. I know you won’t expect the love you will be suffocated with today. I also know that no one deserves this more than you.

No good luck needed. I’m with you,  my sister.

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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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Befriending Autism

I’ll go back to the flexible routine series of posts. I wanted to take the opportunity to write about this since in the previous post (Making Routine Flexible d) Chris & his Dad routine) I talked about the playground and kids or parents making an effort. Like I’ve said before: “It doesn’t scare me that he probably won’t have a friend. I know that if he wanted one, he would get himself one. He would want to go play with them – like he does sometimes – he would want to watch movies with them, or engage in their activities – like he does when he wants to. It doesn’t scare me because he’s happy doing solitary things, and he’s happy doing group things – when he wants to.” (Autism Every Day Part 2)

But here’s a few things you should know when befriending someone with Autism or with your existing autistic friends, or some knowledge you could pass down to your kids:

1) Don’t assume they don’t understand friendship: I have explained the communication challenges and their trouble with social interactions. But, again and again, that doesn’t apply to everyone with Autism. Some people with autism are exceedingly social, while others are significantly more introverted. Friendship can be defined in many different ways and at it’s core it’s based on mutual interest and respect, shared values and negotiated boundaries. Especially in the earlier years, you just want someone to play with.

2) Be patient. Don’t try to change them into someone you, or society, consider acceptable. They are who they are, and you cannot make them conform to silly, unrealistic societal ideals. Maybe they’ll drive you to change yourself, which means you will be more open-minded, more patient, kind and accepting – now what’s so bad about that? Don’t feel embarrassed by their individuality, embrace it. Feel embarrassed for the people who don’t have the capacity, or knowledge to understand them.

3) Communicate clearly. Use gestures, pictures and facial expressions, don’t expect an immediate response – give your friend extra time. For your kids, try to introduce technical games when with an autistic friend; puzzles, legos usually do the trick.

4) Schedule your plans. Make sure to include that someone with autism, because they might not know how to ask. Include your children in programs where they are paired with autistic kids and set up dinner or movie nights. This doesn’t just benefit the kid with autism, so don’t look at it as doing someone a favour. Your child will learn responsibility, it will learn that being different isn’t bad, they won’t grow up narrow- minded, they’ll be educated about it, they’ll gain skills that will help them develop later on in their lives, socially and personally.  Discrimination isn’t born folks, it’s taught. Once they learn, from a young age to interact, they can then interact outside those structured times. Real friendships are someone to sit with at lunch and a friend in gym class, as long as they are not seen as outcasts in school, they won’t get bullied.

5) Respect their uniqueness. People with autism are often unusually sensitive to sounds, sights, touch, taste and smells. High-pitched sounds like fire alarms may be painful, scratchy fabrics intolerable. Respect how they react to such disturbances.  Don’t assume people with autism are intellectually disabled just because they can’t speak properly or flap their hands when they get anxious. Learn to understand these queues and help them through it.

6) Having an autistic friend is not a project, it’s not community service. If you see it that way, or pass it on to your children in that manner – don’t bother. It’s not a charity; they definitely don’t need your pity. Also, don’t ‘look past the autism’ as autism is integral to who they are. Their identity is shaped by it whether we like it or not. You can’t look past it because there won’t be anything to look at, don’t compare theirs to your experiences because there’s no comparison; much like two people who aren’t autistic and two people who are. Look at your friendship with an autistic person is a positive, healthy experience, as opposed to a charity project. Change your perceptions of the person based on widespread stereotypes of autism or other disabilities.

7) Stand up for them!!! Bullying, abuse and other types of violence are prevalent in the lives of autistic people – from childhood AND adulthood. If you see someone teasing or picking on an autistic peer, take a stand. You’d be surprised at how many people remain passive to bullying. I personally judge people by their inactions rather than their actions. Remove the stigma that society instils in autism.

Educate yourself and your children about autism, embrace it and make it part of your life. Be aware of it and make the world a place where your child can make a difference. A place where our children can make a difference. Learn about autism and remove the stereotypes of society to make the worldwide community a place where everyone is accepted.