Happiness

Its been a while. That’s probably an understatement – it has been a long time. Especially considering the fact that the inspiration strikes me to write at least 10 times a day. The feeling of just me and my words is something that is incomparable. The trigger came for me earlier when I read an interesting article on finding out who you really are and what are your underlying passions in life. This initially seemed like such a prodigious topic for me to deliberate over. The recommended way of finding these answers, according to this article, was to find out who you are through what other people think of you. I find it hard to even type those words. In my opinion, you should never determine your opinion of yourself from the opinions of others. This particular sweeping statement in this article awakened my curiosity – how do you really find out who you are?

Whilst researching this conscientious topic I came across some very interesting concepts about the inner person and the importance of your own self-awareness. A famous philosopher called Alain de Botton made a statement that resonated with me:

“We should focus in on our ideas and make sure that we own them, that we’re truly the authors of our own ambitions. Because it’s bad enough not getting what you want, but it’s even worse to have an idea of what it is you want and find out at the end of the journey that it isn’t, in fact, what you wanted all along”.

The importance of this originality in our own thoughts seems highly relevant. However what if there is no set target or goal? What if we want our lives to be based around a continuous phase of happiness rather than distinctive life goals? For me, I feel that my life has no main goal, rather an all-embracing desire to be happy and make others happy in everything I do. To say that I do not wish to achieve certain things would be incorrect, but these contribute to the main idea of happiness. It may be all very well in stating that I want to achieve in my career, but what use is this if the career I choose does not fulfil me. If I could make a living from putting pen to paper then I would most certainly be doing it. I became the victim of my own prejudices when I was a teenager by undertaking a degree I had little passion about. I will always remember how I said to my English teacher that I could never take English at university. Her dismay was obvious and she questioned me about why I did not think it would be suitable. My reply? Because I enjoyed it too much. I made the association that nothing I was passionate about could ever turn into a career; how very naïve of me. Now I find myself with a degree and career that, although I like, does not leave me feeling fulfilled. My heart will always lie within the written word and for now it is just not feasible to follow that dream, after all a girl has got to eat!

This reminds me of something that Steve Jobs is an advocate of; doing what you love. “Your work is going to fill a large part of your life, and the only way to be truly satisfied is to do what you believe is great work. And the only way to do great work is to love what you do”. Good point Steve but I think he may have taken a more realistic view if he wasn’t wiping with £50 notes and bathing in liquid gold. (A bit exaggerated maybe but you get the idea). We cannot always afford to do what we love, it is just not practical. However in my situation at the moment, although I do not love what I am doing in my career, it is enabling me to do something that I love more than anything in the world; be with the ones closest to me. At the moment, this seems like a logical sacrifice. If I pursued a career I loved with no success my family would be the ones left to pick up the pieces; what a selfish burden I would be. If I continue with a stable income, I can afford to come home to my own little space with the people I love waiting for me. There truly is no better feeling than that.

This brings me onto my last point which is quite simplistic in nature yet is the most relevant to me. It is as simple as this; “Find something more important than you, and dedicate your life to it”. I have that in my life. The few people that I hold close to me are more important than my career, my social life or even that feeling of putting pen to paper. I know who I am.

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Think Twice

If you type in Autism to Google news search you are pretty much guaranteed to be presented with one of two things; researchers are on their way to identifying the gene that causes autism or there is a promising new treatment being tested in some remote laboratory in Russia or other European country. According to recent statistics at least 1 in 100 people have Autism however I find statistics very impersonal. Consider it this way, if you are heading out in public today the chances are very high that you will in fact come across someone who has Autism. Maybe it was that person who behaved oddly at the checkout in front of you whilst you stood there getting frustrated with impatience. Maybe it was the lady who mumbled to herself on the bus whilst you sat in silent judgement whilst the school children sniggered. Or maybe it was the seemingly ordinary man who passed you in the street; unassuming and quiet. Autism is a deceptive disability with no set definition of atypical behaviour, but surely in a modern day society this should not be an issue? Many of the fundamental behavioural issues surrounding Autism usually involve social dysfunctions or the inability to maintain “socially acceptable” behaviour; therefore many treatments involve educating an Autistic child to what behaviour is determined to be acceptable. I’m sorry but am I the only one that thinks that society should accommodate the Autistic person? Not the Autistic person having to accommodate society.

Surely this is the case with many other disabilities. For example, in my most recent job I had to participate in a disability awareness course to better understand and aid customers who were disabled. The whole topic was discussing people who had physical disabilities and how our store had various provisions to help the customers on their shopping experience. Most people would have come out of that training session knowing exactly how to operate the disabled lift yet still completely unaware of how to handle a situation with someone whose disability was a little less apparent. But maybe this is the problem with people in general; people can be ignorant. Clearly that child having a tantrum in the middle of the floor is just misbehaving, that man who slowed up the queue in front of you was just being difficult and that lady talking to herself in the street was simply crazy. Maybe we just need to be better people; I know that my children will never be raised to laugh at anyone. My biggest fear has never been having a child that has a disability, but having a child who laughs at someone who has a disability.

A Little Love

 This little talk about girlfriends got me thinking. I have had boyfriends of course, each coming under scrutiny from my brother. Apparently, according to him, each had distinct flaws that did not make them suitable for me; these range from a simple eye twitch to other more obvious traits like being a compulsive liar. Clearly his observations had some truth as I am not with any of them now, and that is most definitely a good thing.

I go through a mental vetting process before I even consider introducing anyone to my small family. We can usually keep up a good appearance, the often harsh realities are kept quiet and everything seems relatively “normal”. Just once I think it would be nice to meet someone who was under no illusion about our life, and my role in my brother’s life. I have days where everything feels and seems so hopeless, how can I ever begin to tell someone about days like these? I think that is the importance of meeting someone who can be your best friend as well as your partner. Don’t get me wrong, I’m not asking for someone to take on the responsibility of my life, just someone who can show an understanding. I ended up on a couple of dates a few months ago with a guy who had no concept of what it was like to struggle in life. I’m not stating that this is a bad thing, but this man had no realisation of any circumstance other than his own. I played the part of the unaffected average girl quite well, knowing that this would go little further than a few dates. There was no way on earth I could ever sit in front of this man and tell him about my life. I remember days of hiding behind the sofa when the “bill man” came knocking, this man’s childhood trauma revolved around his goldfish dying when he was three.

It’s a shame but maybe my standards are too high, am I expecting too much? I’ll often loose myself in books like Jayne Eyre or Pride and Prejudice then proceed to compare every man to Mr Rochester or Mr Darcy. I’m fully aware of how deluded these thoughts are, but is it too much to want gentleman who pronounces his words properly to come and whisk me off my feet? I’ll say that I’m not but I think the truth is that I am a hopeless romantic; I love everything about love. What could be bad about something that produces things so beautiful? Many of the masterpieces of our time are the products or representations of great love; Romeo and Juliet, The kiss and even When Harry met Sally! Thanks to my brother I think I have the capacity for great love, I just haven’t had the full opportunity to use it yet.

Love creates beautiful things. Many of my favourite pieces of artwork are portrayals of love and all of my favourite poetry has love at its source. I can only dream of one day being privileged to feel those things that compelled those great artists to channel their emotions in such a way. Is it selfish to want to be in love so I can better understand these beautiful things? I have only been in love once and that was complete torture; although it made for good writing. It has certainly taught me that we can never choose who we fall in love with providing us with a great inconvenience.  Love can appear in a second and last for a lifetime.

 

The Birds and the Bees

Another day spent anticipating a beautiful sunset. It seems that is how I am spending most of my days recently, that and watching episode after episode of Frasier. The highlights of my day consist of taking my brother to and from his college course; a select moment of time in the day which we both look forward to. This morning was no different from any other, we have formed our own rendition of Robin Thicke’s “Blurred Lines”… no doubt you will hear it in the charts soon.

Last night my mum and I had to have a conversation with him about the “birds and bees”. I certainly do not envy him being raised by two women. However my argument is that we can teach him everything about how a man should treat a woman and essentially shape him into the perfect boyfriend. Although this ideal seems further and further away after our conversation last night. One thing you will find with people who have Autism is that subtlety is not a common characteristic. My brother is totally to the point, any question he had he asked. Last night’s topic was about girlfriends, or more definitely lack of. “When will a girlfriend come along?”, “Do you cuddle and kiss a girlfriend?” oh and my favourite “What is a clitoris?” Yes, we had to sit and explain to my 19 year old brother last night what one of those was and why it was there. Google obviously proved to be useful for a formal definition yet he needed some convincing that the clitoris was not an “on/off” button that you press just once. Imagine the simplicity if it was.

I would love to be able to set him up on a date yet due to my overprotective nature and lack of potential suitors I do not see this happening anytime in the near future. I’m sitting here looking at him whilst I write this thinking who could not want to date my lovely little brother, however he has just proceeded to complete his usual ritual of putting his finger in his ear repeatedly to itch it, whilst then smelling it afterwards. What an absolute stud. 

Man VS Cheeseburger

I’ve been away for a while; not by choice. I had my wisdom teeth removed last week and that turned out to be something far more painful than expected. My face is still swollen and I have that feeling where I just do not feel like myself. Yesterday was the first day I managed to get out of the house for longer than an hour.  We had beautiful weather here yesterday; my brother, his friend, my mum and I took an evening sunset stroll down to the beach and we certainly were not disappointed. I managed to dip my toes into the sea and just listen to the soothing waves circle my feet. I knew that the whole world could fall apart around me, and I could still go down to this spot and feel this way. The sunset is something I can rely on, it’s not undependable like the events of life.  I head down there whenever I can, and like an old friend it comforts me; providing stability and reassurance in an ever-changing and chaotic world.

For now, it seems the chaos is settled, in terms of my brother anyway. My mum has hit an invisible wall as to where she feels she can go no further. When does she have a life that becomes her own again? I think that the realisation has come with me nearing the completion of university and beginning to hunt for jobs; I have the freedom to do that whereas she does not. I cannot wait to leave university and be earning a wage; struggling through life is just not a viable option. However I curse the burden of ambition that weights upon me. I feel that staying in education is the only way I can achieve although I’m sure this is not the case.

My brother did really make me think about what I wanted to achieve with my life, he asked possibly the hardest question I ever had to answer. He asked; “If you had the choice would you be able to eat every kind of food you want and never put on any weight, or have one whole night with Leonardo DiCaprio?” That is one question that has stayed on my mind ever since he asked and the answer varies from day to day! Visualise how simple life would be if it all just boiled down to this question?! I still do not know what I would choose, the idea of living off of those perfectly formed McDonalds cheeseburgers sounds like heaven, but so does an enthralling night of passion with the man of my dreams. Imagine if I could combine the two; Leonardo DiCaprio covered in cheeseburgers…now that is definitely something worth dreaming about.

Kindness

My two fellow musketeers finally returned home and my brother was understandably shaken up. His fragility had never been more apparent yet it was reassuring to hear that all the staff at the hospital had been so wonderful. I found myself going into his room every hour or so just to check that he was ok, luckily he could sleep through an earthquake so he did not even realise I was in there. These events have led to a somewhat turbulent week; one thing you begin to learn when living alongside someone with Autism is that usually one significant episode will have a variety of repercussions.

Understandably mum and I have spent most of the past few days with him constantly; I think he might get sick of the sight of us soon! This is really no different from normal if I’m being completely honest, I much prefer his company over most of my friends. With my brother, what you see is exactly what you get. Just being in his company is effortless and there is not one person on this earth that I’m more myself with. He does not judge me when I laze around in oversized Pyjamas or when my hair remains un-brushed for days. He never tires of listening to my occasional self-pitying and even tries to make everything better with a giant cup of tea. If this boy, with so many confusions in his mind, can manage genuine kindness and empathy, it perplexes me how others of “normal functioning” can be so hateful.

I cannot even begin to convey how proud I am of him this week, there just seems to be so much constant upheaval and I have no idea how he is managing to deal with it. Mum and I are preparing ourselves for sudden low that could come about at any point. It would only contribute to the harsh realities of life that seem to be dawning upon me at the moment. I finished university a few weeks ago and in a sense this was my comfort blanket, this is what safeguarded me from life outside education. I could not be happier then when I am learning or writing and I would have loved nothing more than being able to complete a master’s degree, yet due to our financial situation at home I just do not see this as a viable option. Only today my mum sat us both down and told us how our internet would be cut off so she could make this month’s rent. If I do not write for a while this is why! It’s obviously no major concern as I’m still so lucky to have a roof over my head, I just long for the day where my mum will not have to worry about hunting round the house for loose change just to make rent. 

The Three Musketeers

So I briefly touched upon a somewhat more humorous side to living alongside autism, and yes it’s true that my house is always filled with laughter. Yet tonight would be a prolific example of when the laughter is forgotten and you are left with the rawness of the situation. It’s midnight and I’m in the house on my own as my brother and mum have had to go up to the hospital. Due to our united bond as “the three musketeers”, I find myself isolated in this situation with my writing providing an unexpected kind of comfort. It is the nights like these that confirm to me why it is just us three, how could we begin to explain nights like these to anyone else, and why would we want to?

Tonight was a build-up of events; pains in his chest, trouble breathing and heart palpitations that have been gradually getting worse over the past few days. We took him to the doctor’s earlier however it was not our family doctor and the unfamiliarity of the situation for my brother was unnerving. The doctor hardly knew him, which is of course not his fault but put him at a distinct disadvantage when assessing him.  The basic outcome was that he was due to go in tomorrow for an ECG and blood tests to thoroughly check him out. However when we got him home it all got progressively worse and he was understandably scared, clearly not understanding what was happening to him. My mum and I were terrified so I cannot begin to imagine how he was feeling. I sat there on the floor looking up at him whilst I could hear my mum’s voice beginning to break on the phone to the ambulance services.  In that moment I wished, with all my being, that I could take this away from him. I wished that I had the words to explain what he was feeling in a way he would understand.

 One of the worst things about seeing him in any kind of pain is some of the things that he says; tonight he told us that this feeling was so unusual that he was convinced he was going to die and that we needed to continue our lives if he’s not here. My mum and I have become pretty solid when it comes blocking out emotional interference, but that one hurt. I think what sometimes scares me the most is not how much he depends on my mum and I, but how much we depend on him. He is the person that gives me the inspiration to achieve in the face of adversity, he is the reminder that a little kindness can go a long way and he is the reason that I am the way I am. Without him I am not me.

And now sitting here without my two fellow musketeers I feel incomplete. But I’m still the lucky one, his poor mind must be running on over time and my mum is no spring chicken, although she would kill me for writing that.

 Please god keep them both safe.

Slapping Chickens

So this morning was another eventful morning, as it always is. I can almost guarantee that no one day is ever the same, and I think that’s a blessing as routine bores me. Obviously my brother has his set routine in the mornings yet there’s no reassurance that this will make things run smoothly. I found the loaf of bread in the kitchen this morning in a slightly questionable state. Usually my brother will go through phases of certain behaviours and then they suddenly disappear; it looks like the bread was his latest victim. For some reason he felt the need to put his finger through the whole loaf of bread because “it felt nice”. Consequently every slice has a gaping hole through the middle of it; I just pray he washed his hands this morning (which is unlikely seeing as his routine is to wash his hands before he goes to the toilet).

This just reminded of a few of the things that have happened before. He also has a sensory disorder where items can feel softer or rougher than they would to you or I. This has put my mum and me in some quite unusual situations. I can remember a few years ago we had to avoid shopping with him in large supermarkets; he had developed a somewhat peculiar habit. We could never usually go down the meat aisle without him slapping a chicken. Yes, you did read that right. For years if he ever came near a cellophane wrapped chicken he would go out of the way to slap it. Not a delicate tap either, a full on slap. As you can imagine there have been a few stares and disapproving looks, not that this ever bothered us. Once again he told us that it was because “it felt good”. You’ve got to wonder how good it must feel to slap a chicken. I think that’s the worst part of it. I found myself not long ago confronted with the meat aisle, the perfectly wrapped chicken gazing back at me. I felt I owed it to myself just to try, surely there must be a reason that he continued to pay so much attention to poultry. So there I was just me and the chicken. I have to say, slapping that chicken was possibly the most liberating experience I’ve had in a long time.

I wonder if these autistic tendencies can rub off on family members as it is not in my nature to go around looking for chickens to strike. Luckily this is not a common occurrence anymore.  It is in fact just one of many things that his sensory disorder has affected. My mum was called into the school when he was around five years old and the teachers seemed somewhat perturbed by his behaviour. They proceeded to inform her that he had sat, for the whole day, and licked the inside of every window in the classroom because he said he liked the feel of the cold on his tongue. What on earth could she possibly say to that? I have also hated the discriminatory term “window licker”, but my poor darling brother had no idea what he was setting himself up for. At least the classroom windows were sparkling clean. I can safely say this is one habit I did not try and repeat, although I can imagine it’s the similar to that feeling you get when you try and get your tongue stuck on an ice lolly? Who knows?

I would love to know if any of you have experienced any little habits like these, or know anyone that has? Or if you have repeated this yourself, although I doubt anyone would openly own up to slapping chickens and licking windows.

Counting Cards.

When I first thought about writing a blog, I was quite naïve to what I could actually write about. I thought it would have to be about something like fashion or celebrities; slightly narrow-minded of me. However, the website prompted to ask me, “What inspires you?” A broad question with a very definite answer; my brother. My wonderful and truly inspirational younger brother. But then I began to question how on earth would I write a blog about him and about our life? I figured I would take it a day at a time, much like Autism, and see what happens. One day I hope to offer advice to siblings of people with Autism as it is no walk in the park.

So what do I know? I know that if one more person compares my younger brother to Rainman I think I will go insane. I cannot tell you how many times I have had people say “Oh yes Autism, doesn’t that mean he is really good at something”. No it does not mean he is really good at something, that is often a rarity and I do not like having to justify my brother’s apparent lack of “special talent”. Rainman might have increased awareness of Autism but it certainly did not paint an accurate picture. I will never forget the time when on my brothers 18^th birthday my friends asked to take him out to the casino… I did not really click about why they wanted to do this until one of them mentioned that “all autistic people can count cards”. I couldn’t help but laugh and also mention that if this was the case I certainly wouldn’t be counting the pennies to put petrol in my car to drive him about. I would have made sure he cashed in on this talent a long time ago!

So no, he does not have any special talent. But what he does have is the ability to make me feel like the most treasured person in the world. It’s a privilege living with Autism and it is a privilege living with him. Hopefully I can share some of these moments with you.