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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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Why Blue?

I always did wonder why blue for Autism? And here’s the answer:417274_10150752439575030_419644176_n

Blue represents trust, honesty and loyalty. It is sincere, reserved and quiet, it hates confrontation, likes to do things in its own way, it has a need for order and direction in its life, including its living and work spaces.- remind you of anyone yet?

This is a colour that seeks peace and tranquillity above everything else, promoting both physical and mental relaxation. It reduces stress, creating a sense of calmness, relaxation and order – and although we may not feel that as carers, our kids definitely feel safe, calm and relaxed in their own space. Blue represents freedom. Perhaps freedom from the daily hassles of life – money, jobs, paying the bills etc.

It is idealistic, improving self-expression – in their need to find more than words to express themselves – and their ability to communicate their needs and wants. It inspires higher ideals – for us. They inspire us to push through and try for more. They inspire us to take chances and be strong in taking new paths. They are our inspiration for innovation. Chris has definitely been my inspiration; as I’ve mentioned before.

Blue’s wisdom comes from its higher level of intelligence, a spiritual perspective. Cannot stress this enough – autism is a spectrum condition, which means that, all people with autism share certain difficulties but their position on the spectrum will affect them in different ways. Some are able to live fully or relatively independent lives (high-functioning autism), like people who have never been diagnosed, but others will have learning disabilities, will not be able to communicate and will need a lifetime of specialist support. Some may excel in academic subjects; for example Chris is a Math genius, give him any equation, he knows it. Others may excel in arts, crafts and technical subjects.

Blue builds strong, trusting relationships. No argument there. The people who surround Chris are crazy about him, there is nothing in the world we wouldn’t do for him. He has also helped us as a family work on our relationships with each other, he brought us closer, made our bond stronger.

Blue is conservative and predictable, a safe and secure colour.  Our kids don’t like change, even though we try day and night to keep them open-minded and to draw them out of their shells. They are safe, kind and compassionate people who will love you forever, and even though they don’t show you most of the time when they do its indescribable. Change is difficult for blue. They lock themselves in a routine that they are happy to carry on forever; and then we come along. Blue is inflexible and when faced with a new or different idea, it considers it, analyses it, thinks it over slowly and then tries to make it fit its own acceptable version of reality. Example that pops to mind – and I’m sure my family will agree – is food. Like I mentioned in previous posts, food is paramount in our household. “He stares as we bring over the food, picks up the plate, smells it and then if we’re lucky takes a tiny bite; and by tiny I mean that ants would probably carry a bigger bit than the amount he is willing to try. Then comes the silence – we hold our breath, fists clenching, heart racing all waiting to see if he approves of the dish. It all sounds a tad bit dramatic but imagine going through that every day, every meal, worrying about every restaurant, every holiday – we’ve become immune to it now. In fact we find it strange when kids just start eating their food without an investigation.”

They are not threatening, there’s no reason to be alarmed unless you don’t understand them. That’s what this month is about, so take advantage of it. You know autistic people, and if you don’t you will meet them. More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined. Autism is the fastest-growing developmental disability in the world.

Blue is the colour of truth – and what is more truthful than the pure nature of our kids?