The Secret Life of Dees

Only the good die young,

2011-11-27T02:15:00.000+10:30

Yesterday, I remember it well, my stomach churned as I read the news to find that another young person lost their lives on South Australian roads though it was not until the afternoon my worst fears were realised. Someone I love, someone I know, someone I had grown up with died in a car accident. She was 22 and has a beautiful little girl, but I remember her as a beautiful little girl.

What I find so hard is to actually accept that this is real and has happened, Jasmine was always so happy, so smiley and so full of life; to even begin to think she is gone is like... opening a great big hole in my heart. I hadn't seen her in years, but kept in contact via Facebook and her sisters whom I speak to on a regular basis... and all I ever heard was how happy she was and how she loved being a mummy. I am glad she had the chance to experience that and I know for certain that the darling little girl will know all about her mother, and she will be as proud of her as I was.

I feel like I have lost some more of my childhood and innocence, so many happy childhood memories are entwined in Jasmine and her sisters; how many times did we beg our parents for BBQs and sleepovers? You are gorgeous Jasmine, you will remain gorgeous. I am blessed to have known you and I am sure I am not the only one who feels that way.

God took another angel home on this day.

My heart, my love, my thoughts and prayers are sent to you and your family, I know you will watch over them and I know they will help each other through, as crazy as both our families are, there is so much love in them and I know they will do all they can to continue to share your joy and love with the world.

Please, everyone else, be careful on the roads, please, be smart.

Jazzy... I love you.

We Have Sweatshops in Australia (Original published 20/7/10)

2011-08-30T08:54:00.000+09:30

Sadly Bee has to face the pain of losing a job today as we received a call about an hour ago now telling her that she is no longer required at her place of employment. The reasoning for it, as far as I am concerned, is rather lame. Her ex-boss has decided that because Bee cannot possibly work two three and a half hour days in a row (which she knew upon employing her) that she won't keep her on despite the fact Bee is a brilliant little worker (her own words.) I find this disgusting as Deb was more than happy to employ my sister when she was getting money out of the government to give her a job, but as soon as she is expected to pay $71 p/w for 10hrs work (so yes, $7.10 p/h... $3 less than the minimum wage requirements here in South Australia for a car polisher) she has decided that she will no longer keep Bianca on if she cannot work two or three days in a row.

What pisses me off most about all this, is the fact when Bee started at the job, I made it rather clear she did not have the stamina to work more than one three hour day on, then have one off and THEY WERE OKAY WITH THIS. They were well aware that Bee had her disability and stamina issues and that they were going to make all the allowances needed for them, but no, as soon as she lost her free labour, Bee's boss decides 'screw the arrangement' and expects her to be able to do something she was told would never happen and never could happen, it wasn't like she was employing an able bodied person.

It makes me so mad, especially considering the fact she had told Bee how much she valued her as an employee and how proud of her she was, then turns around after giving her 3 weeks off of work and two days before my sister is meant to go back has the employment agency tell us she isn't keeping her on. Bee was there for about 10 months... and she worked her arse off, did her best and did more cars each day than the young man they are keeping on, but because she cannot be the cheap labour (slave labour?) she wants, it is Sayoonara Sweetheart.

Unfortunately this is a constant problem in Australia when it comes to giving people with disabilities jobs, because they get a payment from the government, if they find a job it is at a wage WAY under the minimum, even if they can perform the job at 100% capacity (not that Bee could, but still). They say to you they have the chance to increase their wage, but this happens very slowly over time. Take for example supported workshops; Bee worked in one for a few months and she sat at a sewing machine all day (and came home exhausted every night) and she was being paid .50c an hour. If shit like that happens in China or Africa, we kick up a stink, sure it isn't sweatshop conditions, but their hard work is being exploited so the businesses out there can save a dollar or two rather than pay people properly. And it isn't like the governments lousy $350 p/w payment to people with disabilities is enough to sustain a decent, independent life. Why shouldn't someone with disabilities be allowed to achieve the same dreams as those able bodied? Perhaps they don't want to rely on government payments all their life? Perhaps they would like to save money to go traveling or buy a property? Since when did we decide that people with cognitive impairments may not have similar dreams and desires of financial freedom to every other Australian.

Yes, okay, they might need a little more support in the workplace, but we make allowances for people whom have physical impairments, be it a wheelchair or a bum leg. Why? because it is AGAINST THE LAW to discriminate against these people, it is AGAINST THE LAW to prevent them from having the same opportunities as everyone else... then why is it different for someone whom may have a cognitive function problem? What? because they cannot think the same as us it makes them a lesser human and we have to tell them what they can and can't achieve in this world? Because they don't fully understand they are being exploited it is right for us to use them, pay them less than minimum wage to not clash with their 'oh so lucrative' government pension? Like I said, if this happened to kids in China or Africa we'd be pitching a fit and requiring that the businesses whom deal with these sweatshops are shut down. It is unfair, unjust and all kinds of wrong.

Bee knows what she wants in life and deserves the SAME opportunities as everyone else to excel in her chosen field by making the same allowances you would for someone in a wheelchair. Sacking her on grounds you had ALREADY accepted, because you don't want to pay her what she deserves for being a good worker is so not on in my honest, humble opinion.

What do you think? Has anyone else out there had to deal with a similar situation?

2011-05-21T15:33:00.001+09:30

What I have learnt about friendships...

2011-05-03T10:48:00.002+09:30

What I don't understand is why the loyal friend, whom sits through all the crap, listens to all the shit at all hours of the night, whom grew tired of hearing one thing day in and day out and finally said it after having been told her short comings constantly is the one whom is shit on.

So what, you don't agree with everything the same. You don't think the same, of course you won't... for a start... you're two different people. So you have disagreements... that's normal when people are different but what hurts me most is the promise that was broken. That I wouldn't be treated again like I was in the past. And yet... here I am again.

I am not perfect. Nor is anyone else and I accept there will be issues at times with my friend, but I also believe that my friends are more than just their faults, more than just the things which sometimes grind my gears and are true treasures and I never... ever would simply discard them over a disagreement.

I have kept friends whom are soooo different to me it is like night and day, but we both make it work. Friendship, like any relationship needs work, trust and loyalty. I am willing to give all three... but so often, few others do.

I have lost two very dear friendships to me in the past five years. Both was via their choice because I finally chose to say something on what, not only I, believe was poor behaviour. i am not a therapist... I am a friend and I have my issues in my life too. Perhaps I was too abrupt in how I brought up what had finally snapped me, if I was... sorry... but how many times did I hear abruptness from the other end. Either way, questions were asked and I gave the truth at that point in time. If the truth hurt, I am sorry but I have heard truths from those friends which hurt and rather than cast them aside I have accepted it. I did not ask either friend to cast me away because I had an issue with one thing. Like I never cast them away when they were less than kind about the man I love. I chose to forgive, work on things and better our friendship...

I have one friend, one whom really, but rights should be the LAST person talking to me. I have been so cruel to them in the past, I have said and done some horrible, bitter and childish things to them... and yet, they have forgiven me for how cruel I was all those years ago and they have accept there was some truth in my words, even if they were much too harsh and we have worked together to make our friendship work, and for that I am blessed... because they, like me... understand I am only human too. I have faults and flaws and imperfections and I cannot change that, nor can I change who I am in the blink of an eye but I can grow and I can change and I deserve some support too and as you support me, I will support you and accept you as human but love you anyway.

It is funny how your truest friends are the ones you barely see at first. They stand back, waiting for when you need to be picked up and suddenly slip in there and offer you the support you didn't even know you needed and then, when you need it no more, they just stay close to have your back. You don't realise that they are the truest friends you will ever meet until you are tested the most.

I found that with another girl, my maid of honour for my wedding. I had known her all my childhood life and we'd always got along well, but the girl I thought was my best friend... although I still care for her, wasn't. My best friend was the other girl, and it wasn't like she was a mouse of a person, she is far from that... but she was the one whom was always first to congratulate me on my achievements and is the first to call when something is wrong and tell me when I am a dork, but in a way that doesn't wound. It took me years to see whom my true best friend was and I am so thankful for her. She and another whom I had terribly undervalued turned out to be the two truest people I could find.

It is funny when you get older, you finally see who your real friends are. It doesn't mean it doesn't hurt when you lose a friendship you put your heart and soul into.

Oh, I know some friends drift in and out like waves upon the sand and they all have their purpose for being in your life for that time, and you have been enriched for that time, but like the waves take grains of sand, so do these people take pieces of your heart and for a while those losses feel like gaping wounds, but in time... they will hopefully just be a fond memory, yet there will always be a hole where they are meant to be.

Then you have other friends whom are like rock, they are beat and abused by the elements and even affected some by the waves... but they stand strong and are shaped with the changing elements around them into beautiful structures of strength and one day you just notice them and the true beauty they bring. And the strength they are in your life. It takes years to see this, because when we are young we fail to understand the sublime and the understated... we see what is shiny and exciting, but as we age and we learn that the shine fades we look to the truest beauty in this world and that is the beauty which is often most overlooked by the young, the sublime and the understated.

Yet, we will still look to the ocean and yearn for the excitement it once brought us... from time to time... and maybe even shed a tear when certain waves roll out of our lives.

I seem to attract certain people.

2011-02-09T11:08:00.002+10:30

I have found, in my life I have a bad habit of attracting certain type of people, the disabled. Now, I do not mean disabilities like that of Bee, whom has an honest to God, legitimate disability, but people whom have a 'mental' disability in the sense that they cannot function within the parameters of normal society and normal friendship.

These are the kinds of people whom bitch about someone using you and taking you for granted merely because this other person doesn't like them and then when you finally tell the one whom *is* taking you for granted the second slips into their place and promises they shan't do the same thing, and it all starts out okay, but eventually their true nature is revealed to be just as selfish and just as pig headed. They are using your good nature and the fact you are a caring type of person to have you fix their life.

It becomes rather tedious, but a carer can't help but be a carer all the time. Oh yes, we get frustrated and we want to tell people to piss off, but when we see someone in pain, someone in need that 'motherly' side of us kicks in. I know for certain I am not the only carer whom does this. We take in the infirm and the disabled in their lives and try and help them grow and learn.

For five months, everyday I heard of the troubles a 'friend' of mine had with trusting her boyfriend, I heard everyday how she wanted to dump him because she was sure he was going to dump her over the most minute, usual couple issues. Yes, she had been hurt badly in the past, to the point it disabled all sense of reason in her current relationship, to the point that when there was a tragedy in her partners life, her concern was not 'omg how is my partner doing?' (at least not to me) but rather 'omg this will make him want to break up with me!'. This, I found so immensely self-centred and ridiculous I couldn't stomach this behaviour any more. There is disabled and there is invalid. She slipped from being disabled in functions regarding relationships in my mind, to a complete invalid.

No, maybe I am being harsh, but her comment utterly floored me and disappointed me, I always knew she was selfish, I had learnt to deal with that, but this went beyond. I had learnt to deal with her always talking about herself and when I did talk about my issues getting a slightly less than nice response to some of them. I had learnt to deal with her inflated sense of ego, but I was getting tired of being shoved aside and ignored and the rather dense and selfish comments which came out of her mouth.

Though, this story is similar for another I had to tell to take a hike. They take from me until they can find someone else to take from and not give anything in return and I allow them to, because I care, because I can see underneath their hard, sometimes extremely selfish behaviour that they are a good person, with a good heart, but are just disabled in one way or another and need help to see who lies beyond that and how to function properly with their issues... which sounds kind of conceited in a way, but I will clarify, I am not perfect and I have my disabilities too. I struggle with being open emotionally with my fiancé, I struggle with telling people to back off when I am so emotionally drained not just from them but the life around me.

I know my shortcomings, I also know I can be a right bitch when pushed too far, but I do care for my friends, I want to be here for them but I can only take so much, after all, I do have more than just them to care for. I have my sister with me full time, I have issues in my family life, I have other concerns. There is only so much of me to give, and after five to twelve months of the same shit, I will crack and I will draw back and I will be tired.

I am human. If you want me to be there for you, at least give me time to recuperate. I don't mind listening, but I wouldn't mind a little give in return.

Been a long time.

2010-11-09T12:21:00.000+10:30

Hey to all 5 of you in my captive audience... ;)

Sorry it has been so long since I have updated, but there has been a lot going on in the real world, so the cyber space world had to take a bit of a break for a while. We managed to get a new house, a much nicer new house... it is big, spacious and neat and tidy and in much, much better condition than the old one, so of course I have had to get it all done. Now we are all settled I can start updating this a bit more, I am aiming for at least once a week... but I really need to pull my finger out.

Now for news on my last post, I sent it on to Amanda Rishworth, MP, whom then sent it on to the MP for Disabilities, i think they were looking into how they could change the way the Disability employment sector could change. I also changed the agency Bee was with and then new place has said they will never deal with the car yard which screwed Bee over so badly... so that is all good.

We are, however, living in a more rural area so it might be a slight more difficult to find her a job, but... we will see what happens, she wants to work in a DVD store or a Library, both would fit her rather well and I will keep you all informed!

Anyway, just a short one today, I promise to give you all something more interesting soon.

Love long time!

A Child in an Adults mind, an Adult with a child mind, neither or both?

2010-07-19T18:43:00.000+09:30

Wow, sorry it has been so long since I have updated but things got a bit hectic and then every time I started to update something would happen and I'd be stopped half way through and I'd lose my train of thought but now I am back and will (hopefully) try and update this thing once a week. At least that was my intention with this blog when I started, but between Bee, other half, other children, parents and uni I really haven't had much time to scratch myself let alone think about what to put in here.

Life is crazy.

Another crazy thing is trying to have someone whom hasn't been a part of my sisters life forever to getting used to being a part of my sisters life and what to expect from her and how to deal with her. Unfortunately you cannot treat Bee like you would a normal 23 year old, but at the same time you cannot treat her entirely like a child so it sounds like I am being contrary with how I am telling someone to deal with her. On one hand I say to encourage her adult behaviours and yet at the same time, accept she does not have the reasoning of an adult. Quite simply Bee's mind is wired differently to ours and how she processes things varies greatly to anyone I know.

I never would have thought I would have to use a rewards chart for my 23 year old sister to understand the concept of the behaviours expected from her, but at the same time I never thought I'd have to ensure she knew how to use contraceptives but unfortunately that is the situation with Bee. She has adult wants and needs just as any 23 year old, but does not have the same concept of accepted behaviours in our household.

I am able to find the balance needed to deal with all aspects of my sister and see her as the adult with the difficulties she has to conform to what one would consider adult actions, well most times, I won't deny there are times that Bee throws me through a total loop, like when she throws a tantrum seemingly out of nowhere. The balance required to deal with my sister, is unfortunately something that is built over time of knowing her and being able to gauge what is and what isn't expected of her. When someone whom has not had 23 years to deal with and get to know Bee comes on the scene, it is a bit like being thrown into a labyrinth blindfolded. You need to feel your way to understand how she works and your concept of who she is may change each day, there are those whom see her as just a slow adult and expect her to one day be able to arrive at the rationalistic mind most of us as adults have, then there are those whom see her as a perpetual child without the ability to grow, change and understand adult concepts.

Neither school of thought works with Bianca and you find yourself fluctuating between the two dependent on the situation in which you are in. Bee's mind does not work like that of a child or an adult, but is it's own little world which has the ability to say... read at the level of someone of age 13, but then can understand the concept of sex in an adult mindset. It is the same with meeting people, on first meeting everyone is good... be them a drug addict, nun, alcoholic or just a general good person (a situation which causes me no end of stress to be honest). Most adults in their 20's will be able to see an intoxicated, likely abrasive person and know to keep a distance, we also understand the concept of not just approaching anyone... Bee does not have these same buffers, especially not on first meetings. Her early warning signals are severely delayed and may possibly grow after several meetings with the same person... but at the same time that is not necessarily so.

To live in Bee's world, to have her in your world, one must be able to let go of preconceived notions of what makes and adult and what makes a child and that there is a clear definition of teenage hood between the two. It is also not helpful to think of her as a 'slow' adult or a 'trapped' child, because that again conjures up the wrong set of behaviours we build to deal with people. This lies the same for all people with disabilities and even the aged whom have a dementia. To deal with someone like Bee, we need to be the mailable ones, whom bend and shift to meet the needs she has at that moment. Yes, we can teach her to react better in our world, but at the same time she will never be able to entirely grasp concepts as we do... even if she does learn over time how to deal with them in her own way.

This proves difficult for people, even I, as we want to see Bee grow and change and behave better... of course we do, but we cannot be authoritarian or too soft... the best thing is to be what she needs at that time and eventually you grow a sort of sixth sense to know if she needs a firmer hand or to hold a hand. But you try to explain this concept to people whom have never dealt with others whom have disabilities... it is as difficult for them to come to terms with as it is not how we deal with most people... most people you can look at and know how to deal with them from a glance.

What makes a parent?

2010-05-20T07:00:00.000+09:30

Recently my validity as being a parent, or a parental figure has come under fire on a LJ community I was once a member of. I stated simply that I have views which differ to others on the subjects of ADHD and the nature of 'Organic' foods, and that because I am not a traditional parent that I can have no idea what it is like to love a child. Nor did the fact that I care full time for my sister, in a very parental manner, seem to matter. So what is it that makes a parent? Is the fact that I did not give birth to Bee mean I am not as valid to have views as any parent would? What about the fact that I have fertility problems and because I may not ever be able to have a child of my own genetic code make me less of a caring, loving parent whom faces similar trials to those whom have naturally had their own children?

What exactly makes up the dynamic of being a mother, or in my case a surrogate mother? I still discipline my sister, I still go through the same emotions mothers do, pride, annoyance, worry, anger. Even my entire family see that I have a more 'mother/daughter' dynamic with Bee than just a sisterly one, that I have surpassed the role of a stereotypical sibling and become much more. Just because I am not a traditional mother, does this make my views on child rearing any less valid?

It frustrates the heck out of me that so many think to be a 'real' mother you need to have given birth to that child yourself. What of foster parents and adoptive parents? Does this mean their concerns and views on raising a child are just ignorant crap that they have formed out of thin air?

So what that I believe the whole movement of organic food is a load of bullshitte, or the fact I believe that the hype about autism and inoculation of children is a load of inflated crap, caused by over protective parents whom just want to wrap their child in cotton wool... there are studies that show there is no real link between immunisation and autism. Should it matter that I personally believe ADHD is a diagnosis fabricated by drug companies and doctors to have parents shell out their hard earned money for drugs that are essentially Speed to control their children? And that I believe the diagnosis of ADHD could be avoided of parents were more willing to actually spend time with their children over working to fill their lives with material things? Or that I feel today relies on the TV as a babysitter?

These are my views I have grown to build over empirical research and informed choice, I am not as ignorant as many would like to argue I am, nor do I have a failing in my intelligence and even if I was not smart, does that mean I am not allowed to formulate my own personal views and shared them on an open forum? Whatever happened to freedom of speech? Sure, my comments and views may not be popular with some, but they still remain my personal views, to which I am entitled without being told I am a glorified babysitter, whom has no idea what it is to be a parent.

Babysitters give back their charges, Bee lives with me 24/7. I make the decisions on what food we will eat, I have the say on what treatments she would have at the doctor, I support her, feed her, discipline her and put a goddamn roof over her head (yes, she contributes, but I take up the lions share). So where do I cease being a parent and start just being a babysitter? Or should that be the other way around?

Wisdom comes from all.

2010-04-28T11:18:00.001+09:30

So I found out the other day that my best friend busted her other half cheating on her, the saddest thing of it all is they have two kids together and she is an utterly beautiful young woman too and had a heart of gold, but we'd lost contact some since I moved here, mainly because life had got a bit in the way. Like I said she has two kids and I have my sister and there are 300+kms between us, so it tends to be a bit hard to keep in contact; as soon as I knew what had happened I was on the phone to her.

Talking to her took my mind back to a few places, especially to when we were younger and I had a hard time making friends whom accepted the fact that I did have a sibling with intellectual disabilities whom might need a bit more care. It was also always hard for me to go out anywhere when I was a bit older without having to have her tag along, mum and dad often wanted to do their thing on the weekends and I often offered to look after my little sister so sometimes the going to parties and the likes was near impossible. But then I had the friends like Bec whom understood and accepted my sister as part of our little group. Most of these were the girls I had known since I was 6 years old (when we moved to the Riverland). But I remember Becky being so great with her and being someone whom would talk to Bee like she was a real human being. And she has always been an awesome friend to me, willing to listen when I needed to talk, always being the one to accept me for who I am and love me anyway. She is just a really top person. I think that is why I was so upset to hear what had happened to her.

Having been through similar with my ex-husband also made me a little more upset about it because I understood the pain she was going through, but at the same time I understood what she meant when she said she had been sort of prepared for it. I think women get this sixth sense of when the relationship is drawing to an end and they begin to let themselves close off. I did it seven months before I called it quits with Peter, Bec said she'd been feeling it a while with her man, but had never expected it to end the way it did. I was almost tempted to tell her 'at least you found him in bed with a woman', I found out my ex-husband was with a man, or two, or three...

I just don't understand the point of cheating to be honest, if you don't want to be in a relationship, if you are unhappy within it, say something, it really isn't that hard is it? Where is the fun in toying another around and breaking them down?

I just hope that Bec will be okay and has plenty of support. Most of my support in my break-up and subsequent divorce came from Bee (and my family, but Bee was living here), actually Bee was an amazing support and she still is when it comes to many things. I don't think I would have survived what I was going through without her. She moved in with me after Peter left so I could keep the house, she held me when I cried and was the first to tell me what an ass my ex-husband was when I started finding myself longing to have him back. (As we all do at first.) She was never afraid to give me a hug as I cried and knew the answer was always chocolate. She also has some wisdom to her, one day saying to me 'If he loved you, he wouldn't hurt you. He is a liar and doesn't care'. It is a true statement, when men give us this 'oh but I love you still, I am so sorry' bull, we drink it up like fools... but Bee is right, if they really DID love us, they wouldn't hurt us. Any carer, mother, wife, sister knows this, you don't go out and do something so low that you know will utterly crush the ones you love. Sure, okay there are times we hurt each other unintentionally, but something as low as cheating and lying and then trying to cover it up with 'I have a sex addiction,' or 'Oh, it meant nothing,' or even 'I was drunk' and having people buy that? They are excuses us able minded woman soak up and accept, look at Tiger Woods, when a young woman, with an intellectual disability can see right through it.

As Bee has pointed out to me, If they love you, they wouldn't hurt you, they are a liar and don't care. It is something we women need to remember when this shit like this happens. But this isn't where her wisdom ends on the subject of relationships... I think maybe we should listen to her a bit more, she has a particularly untainted view on relationships.

Bee's top ten observations on relationships.

You gotta be kind to each other, always
If you fight say sorry, right away
Relationships should be happy
Give each other personal space, so you don't get in each others hair
Don't be horrible to each other in fights, don't call each other nasty names
Hug and kiss each other lots, it shows you love them
Give them little, not dear, presents now and then and a big one for special days to show how you really love them
Talk to each other, instead of yelling AT each other
Tell them how much you love them every day
If they cheat on you and hurt you, they don't love you and they are a liar and don't care about you.

Conveying of emotions can be a difficult task.

2010-04-23T23:46:00.004+09:30

I must admit I have been a bit slack with this thing lately, for that I apologise, between Uni, Bee and getting things ready for when Kala moves in I have been a bit busy and well, sometimes there is the want to write and it feeling like a task. Sometimes you get to a point when you feel like everything you say is tedious and monotonous, then there are the times you aren’t sure you can convey the point you wish to get across.

I think I am like that sometimes when it comes to talking to my sister too, I can’t tell her exactly what I want to tell her or even worse I think she has the greatest difficulty in conveying her thoughts, after all, she has the language and cognitive abilities of someone much younger than her but she does have to deal with adult situations. It must be frustrating for her; I find it frustrating when I know I want to write, but do not know exactly how to say it… I think we have all been in that state where we know *what* we want to say, but when you try and get it out of your mouth you feel crazy and tongue tied and in the end give up. With most people it is nerves, with people with disabilities it is just not having the same extensive vocabulary most of us do.

It is not that Bee cannot put across certain things, but sometimes trying to draw it out of her is like drawing blood from a stone, especially when she is upset. She wants to tell me what is wrong, what is bothering her but she cannot clearly find the words to orate these thoughts and feelings, it must suck for her.

It is like the other night we were watching television and this look passed across her face as if she was going to cry, it seemed so random and so sudden that it actually scared me some. Upon asking her what was wrong, I received some comments that clearly weren’t the problem, one of them being she was worried about the dog because he had been barking earlier… this had been several hours before and clearly no reason to induce tears. Sometimes I get the excuse of ‘I’m just tired’, this is something which has been told to her most of her life when she does get upset and no one can really get the truth out of her, or they don’t want to.
Now, I will admit that Bee will cry at the drop of a hat, if you even say a slight cross word to her, at times, she will instantly burst into tears. These times can be over basic things such as reminding her to put the empty toilet rolls into the bin, but I digress…

The look of horror on her face, the tears she was about to shed, turned out to be the fact she’d had a run in at work with her co-worker and her case worker, they had hurt her and made her feel small; not understanding the concept clearly she couldn’t turn around to me and tell me exactly what it was going through her head. I had taken me over an hour to actually get to the bottom of the situation and to be able to understand the emotions behind it. I won’t go into the situation as I can’t really, but needless to say it had belittled her and the emotions were the same as we all get but to not be able to actually say ‘hey, I feel rather small',’ would be enough to drive anyone mad.

There are times that I think this is why she gets so frustrated at times… it would be like being trapped in a glass cell, able to see the outside and not interact with it because you don’t have the key to open the door. Perhaps this means I need to be a little more understanding at times, but as frustrating as it is for her, it is for the person on the other side trying to reach her.

I guess the best thing to do is just support her and try and give her the tools needed… someday she may learn them enough to be able to use them. Although there are times you wish you could just read her mind and get to the bottom of it rather than struggle and prod and pry to get the answers out of Bianca. Maybe I need to invent a translator or something so I can understand what she is trying to tell me as I have come to a conclusion a lot of things she says is a sort of code to the underlying facts. 'The Dog is barking' can mean 'I'm scared there is someone out there,' or it can simply mean the dog is barking and it is bothering her.

This code in which Bee tends to speak proves to be very difficult for me to know how to deal with a situation. Is she scared? Is she uncomfortable? Although she knows these words and knows what they mean, trying to place them in a logical order tends to provide hard as she hasn't the same cognitive skill and I believe she really does *want* to explain, she just *can't*.

Boogles...

2010-04-14T01:12:00.000+09:30

Boogles is the nickname given to one of Bee's childhood friends. When he was a kid, he was one of those adorable children that had a knack for getting himself and anyone around him into trouble. It wasn't that he was meaning to find trouble, but more that he was just a curious child whom liked to explore. He was also Bee's best-friend, so this meant that he often managed to unintentionally (and sometimes intentionally) rope my sister into his little adventures. One of the most memorable would have to be the night of my cousins 18th.

The evening was like any party, a lot of friends and family and well, my cousin has always been close to Boogles mother so she and her family were invited to the birthday party. This was the start of trouble, the two were about 3 years old and terrible inquisitive. Boogles and Bee decided to go check out what was being left in the glasses and bottles laying about. Now don't go thinking the children weren't being supervised, there was actually very good supervision on the two little trouble makers but they had this uncanny ability to be able to slip off at the slightest opportunity and find something to get into. I guess that is normal for any three year old.

Anyway, as I said they were sampling all the drinks being left laying around, many of these contained alcohol. No one seemed to really understand why the two were getting sillier and gigglier through the night, or why they kept falling over, their taste testing had been rather clandestine and well, when together, Bee and Boogles were rather silly,(these are the two, whom at 12 years old were playing Teenage Mutant Ninja Turtles at 2am and making their mission to steal snacks from the fridge when they were meant to be sleeping, resulting in Dee having to sleep in the room with them to get them to sleep) so no one really though anything of their behaviour until it got to the point, they were falling over more than they really should.

I couldn't say how much they did have to drink, but it couldn't have been much really, I did manage to catch them in the end with a bottle of beer in their hands, a tiny touch in the bottom but there was no question our micro beer tasters were drunk. Thankfully I was able to whisk them away to bed before our parents could find out.

The thing was, despite Boogles being able to find mischief with my little sister, he was and remains today to be one of the truest friends my sister ever had. He didn't have a disability and would stop at nothing to protect Bee from even HIS friends when they would pick on her. For all the trouble he got her in, he protected her like nothing else. Sometimes I wish we still got to see them, he was always there for her. He was always the one to tell his friends to slow down and include Bee.

Even when he was in High School, Boogles would find a day, usually a weekend to ride his bike over to my house only to see my sister, he'd hang out with her for hours, playing her kiddie games, talking to her about things she knew and understood and he always told her she was his friend and he loved her... and geeze did my sister love him, right to the point they often staged fake weddings.

I also remember a time when he swung a crate hook around and it accidentally caught my sister near the eyes. I had never seen a child more scared and he ran off, hiding for an hour and crying because he was so scared he had really hurt Bee. When he had calmed down, he came back and sat with her, holding her hand and running around after her, getting her drinks until she felt better.

For all the trouble he ever caused, I love Boogles, he is a trouble maker but one of the nicest young men I have ever met with a heart of pure gold and I am thankful for the friendship he has offered my sister and for his understanding and love. His friendship has truly enriched my sisters life with fun, love and adventure and I know she still thinks fondly of him to this day.

So do I. He offered her a 'normal' friendship when others were scared of her for her differences

Is it really morning?

2010-04-12T09:46:00.000+09:30

If my sister wouldn't be a danger to herself and everyone on the road I swear I would teach her how to drive so she could get herself to and from work. Some mornings, especially the ones after sitting up all night to do a court report or my tutorial for Uni, getting up is really the last thing I want to do. Sure, there is the taxi to take Bee to work, but that costs money and it sometimes takes ages to get the money back from her employment agency. I could send her by bus... and never see her again.

Bee, on a bus is a different and terrifying experience. She tries to push the button any time she just likes the stop going by and will talk to everyone, and I literally mean anyone. One day it was a man so drunk I don't know if he was trying to speak English, or if gibberish was his native tongue. Another day it was a woman that couldn't speak English at all... oh and then there was the man I am near certain was a flipping serial killer. Then there have been the times she has almost invited people back to our house that I don't know from a bar of soap and well, neither does she. They are also usually pretty feral, like something you might find on Jerry Springer... a rather scary thought.

It was like this one day, Bee and I were on the bus to head into the city for some random reason, and she turns to the man next to us and proceeds to tell him her life story, the man was clearly not interested in more than my sisters chest and despite me telling her quietly to shut up she kept talking to him. She was telling him about her ex-fiancé and the rather personal reasons why they broke up and I swear if he asked he would have found out what colour knickers she was wearing. Oh, not to mention telling him where we live, thus i have many sleepless nights, waiting to hear if one of Bee's 'friends' is going to come knocking on our door. Honestly, a few weeks back I was awake all night as she had given our address to a man whom gave me the creeps, but because he started talking to her, she decided he was her friend.

Now, don't think I don't tell her to stop this, or try and shut her up before it gets that far, it would be easier to pierce a raging bulls left nut than to get her to shut up most the time and most things I try and teach her about personal safety go in one ear and out the other...

So it seems, for now, I am stuck playing personal cab for my sister..

Argh!

2010-04-06T16:41:00.000+09:30

Sometimes this whole 'new relationship' can be frustrating, especially when it comes to terms of my sister, my boyfriend and I have two completely different parenting styles, I guess he is the tough one where as I tend to be a little softer and well, you can't totally parent a 24 year old woman, so when Bee is 'naughty' it becomes difficult to tell how much to punish her and chastise her. How many privileges do I take away from her? Especially if she is paying for it? She's not 8, even though many times she acts like it.

It was like tonight, she frustrated me like crazy by doing her little 'don't start' comment to me. I hate that comment, she says it any time I ask her to do something and doesn't want to do it because she wants to do something more entertaining. Of course dishes aren't as fun as watching This Is It, but dammit, it is her chore and it is something she needs to do. Anyway, I asked her to do the dishes and she started to chuck a little tantrum so all I said was 'Bianca...' and I get the 'Don't start'. (I will forever resent my father for putting this into her vocabulary.) I got annoyed and told her off, I have already confiscated her DSi for a week and the only other thing I could take away from her was our trip out today to see Alice In Wonderland in 3D and Gold Class (which is just the most epic way to see movies, big lounge chairs, food brought to you as you watch the movie) and well, considering she is an adult and paying her half I couldn't really take it away, could I?

After this little spat, I was telling my boyfriend about it and he thinks I should have taken the film away. This lead to us having a disagreement, I didn't want to take it away because the tickets are already paid for and well... she is an adult, he said that if she acts like a child she should be treated like one. It drives me crazy because he is all 'dad' minded where as Bee doesn't need a dad, she just needs a strong brother figure in her life.

But things were sorted and all was happy in the end, but I just hate how Bee leads me to having arguments with the man I love, I guess we will figure it out in time

Random Comments from Bee

2010-04-05T11:40:00.001+09:30

Sometimes my sister comes out with the best, most random comments, some only make sense in the moment and others have become classics that last forever.

My sister never used to be one to swear and when she does it is the funniest thing to hear as she says it with such an innocent tone in her voice so that was why, when she announce at the top of her lungs in an empty pub

“Can I buy any of you c#nts a drink?”

It was even funnier as she HADN’T seen Shaun of the Dead (classic movie).

Another priceless comment comes from when she was living in Broome, I was talking to my perpetually single cousin and asked him if he was hooked up or flying solo.. to which my sister states…

“Who’s your daddy? … HAN SOLO ooooha ooooha”

Another of her times to throw in her unique and random insight is when I am talking to my boyfriend via skype and my darling little sister is listening in. The other night I mentioned to him how much I miss him and Bee turns around and adds…

“She wants to have looooooots of sex with you, like you did in Melbourne!”

But many of her best ones come out so randomly, with no real premise and leave you there thinking ‘wtf, where did that come from?’

“I want to have Daniel Radcliffes babies”

“I don’t care if he’s ginger, I love Ron Weasley” (she is a Harry Potter freak)

“Willow (our cat) darling, shh now, it’s okay darling, I’m getting your dinner… Willow shhh NOW or I’m going to kick you to China”

“OMG I look soooo sexy”

And there are numerous more my barely with it mind remembers at the moment, but trust me next time something utterly crazy happens you’ll be first to know.

By the way, this post was done after a heavy night, apologies if it isn’t up to standard.

Happy Easter.

2010-04-04T03:23:00.000+09:30

One of the most wonderful things about a sibling in their 20's whom has a disability is the joy and spirit she brings to holiday periods, be them Christmas or Easter.

I've never been quite able to figure out if Bee truly believes in Santa and The Easter Bunny or not, but she gets this child like wonderment to her when it is Easter Saturday or Christmas Eve. It is that kind of wonderment and excitement that makes those two nights the longest in the world. Do you remember when you were a kid and would wait up as late as you possibly could trying to hear the wonderful beings slip through your house, but at about 2am your eyelids grew so heavy that you could no longer fight the lull of sleep? That is Bee on these evenings. She is 24 years old...

Last night, Easter Bunny did visit our house, as she's got older massive amounts of Easter eggs have given into other sorts of gift, usually DVD's from the family to mark the holiday, but there is always at least an egg or two... this year, there was a letter left for her to look in the lounge, found when Bee decided at 2am she 'needed' to go to the toilet. This was just a ruse to check her basket.

Upon finding her letter, Bee returns to my room (where she chose to sleep tonight) with the letter on purple shimmering paper, asking me to read it. It stated simply 'Dear Bianca, look in the lounge, Love Easter Bunny' with a little drawing of his paw print. Her eyes lit up brightly and she thrust the letter into my hands, asking me to tell a friend online about it, excited as a kid. I asked her what she was going to do, and she informed me 'I need to sleep... or he might take them ALL away' before curling on her side and dozing off.

I look forward to the morning to see her face as she discovers what Easter Bunny has left for her... it is almost as satisfying as seeing her face on Christmas morning to find that Santa left her exactly the one thing she asked for, a pretty dress. She never asks for much now, deciding the little kids deserve more from Santa.

It's not the gifts however, nor the chocolate which makes the day... but just seeing her so full of the love and joy these holidays are meant to bring. Sometimes I think her disability is a blessing, for as we get older and cynicism starts to seep in, many of us lose the spirit of these holidays.

Anyway, may the child in you live on and may you all enjoy your Easter.

Happy Easter.

Discrimination... and wannabes.

2010-04-02T08:16:00.000+10:30

(posted Jan 12th 2009)

My mothers 50th Birthday was on the 4th of December last year and we had not seen my mother in sometime as of course, my parents are travelling the country in a caravan.

So what we had done was each book a room in a swanky hotel in the city, right across the road from the Casino.

It was shaping up to be a good night, the rooms were nice and we were all done up to head over to the casino and have some fun, we all got some money out and went in, had a drink each and started to play.

Now I had long decided I was not going to get too drunk, but tipsy enough so I was drinking away rather happily, my dear sister is not much of a big drinker so she had probably two in the three hours we were in the casino before we decided to find dinner.

The restuarants in the casino weren't the best so we decided to grab a taxi and head out into the city finding a darling little Chinese restaurant where we had dinner. My father and I polished off a bottle of sparkling red wine, only adding to the copious amounts I had already drank, my sister had a soft drink and mum a wine. It is safe to assume out of the four of us Bianca was the most sober...

After dinner, we went back to the Casino and Bee and I went dancing while mum and dad chilled out on the poker machines (slots to all you Americans whom might read this). I had another drink or two, Bee had maybe one and then soft drinks.

As the night got longer and we had lost enough money we decided to call it a night (after another go on the chocolate wheel) and head across the road to what looked like a quaint little pub next door to our hotel called The Strathmore. So in we went, Bee and I deciding to celebrate mums night we would have a cocktail, not something we often do but it sounded like a bit of fun.

Now I will re-iterate for those whom have lost track, my little sister had a grand total of 3 drinks all night (compared to my easy 10) and was bright, chirpy and talkative as per usual. Bee and I moved up to the bar to be greeted by this tool (refer to image) and we went to order our cocktails.

Bee started talking to him, as she does and because of speech problems she had earlier in life, she can fumble her words a little. My sister proceeded to tell him about our night and how excited she was to have a cocktail for my mothers birthday, that was until the champion turned around and told Bianca she was having a glass of water... because she was drunk.

My jaw hit the floor and my father saw red... I swear his head was going to explode. When asked why my sister was to be given water, the barman replied 'because she is clearly drunk.'

Exsqueeze me? Baking powder? Dear little Bianca was apparently drunk, this is the girl whom had a bottle of water and a coke in the last 3 hours with maybe one alcoholic beverage. I couldn't believe my ears and I turned to the guy... and well, the conversation proceeded something as follows, WS is the barman :

Dee : I'm sorry, but my sister isn't drunk, she's barely had anything to drink all night, this is how she talks normally as she has a disability.

WS : She can have a water.

Dad : Look mate, she's got a disability... its her mums 50th, can she just have a cocktail?

Dee : I can assure you she is always like this, I am her carer, I am with her 24/7

WS : I have made my decision, she is drunk, she will have a water.

Dad : Mate, shes not had a drink all night.

WS : Don't get aggressive with me.

Dee : Dad, just walk away please, let me sort this out.

(At this stage, mum is ropeable, Bee is in tears and Dad has smoke coming out his ears while the wankstain behind the bar tries to give me his most intimidating look)

Dee : Look, I am her carer, shes not drunk, shes had 3 drinks all night.

WS : Oh so it goes from no drinks to 3...

Dad : Do you have kids mate, do you have f'n kids? Look its her mums birthday, we're trying to have a good night.

Mum : I hope you have a kid with disabilities you prick

WS : No I don't have kids...

Dee : Dad, mum, just go wait outside, we're not staying here anyway.

(mum and dad take bee out crying, mum yelling something at the guy about kids with disabilities)

Dee : Dominico, thats your name right? Where's your manager, I want to report you for discrimination.

WS : I am the manager on dut...

Dee : I don't give a shit who you are, I want to know who your manager is

WS proceeded to get me a card and right his name and employee number on it.

Dee : Thanks for almost ruining a good night, Gods forbid you don't have anyone in your family with disabilities, oh and you've lost several customers... I'll call your manager in the morning. Goodnight.

(for reference... I think the bartender might be one of these guys)

And with that I left the bar too, shaking my head before wrapping a distraught sister in my arms and promised her we would go to the casino again.

We arrived in the casino to be served by a wonderful young woman called Milly whom really ended our night on a good note, she even made a mocktail up to Bee's instructions (it would have been wicked with Khaluah and Baileys in it) as well as having served us cocktails prior to this.

We informed Milly of the story and it turned out Dominico (Dickinio?) was a friend of hers and she was appalled at how judgmental he had been in regards my sister and promised to yell at him for us. She also had Bee smiling and laughing again in no time, so I informed her boss of what a wonderful employee she was.

The next morning, I did try and call Rebecca at The Strathmore to inform her of her employees terrible actions the night prior and how my friends would find out at a party on the weekend (a couple at the party were millionaires and vowed never to spend their money at the pub) but I had no answer.

I called back on the Monday and left a message, then called again on the Tuesday, eventually getting hold of Rebecca. She spoke to the wankstain, and called the next day apologising and vowing to send me a voucher for a free meal and to look after us.

This was early December... it is mid January and I haven't received anything yet, I will be calling them again Tuesday if there is nothing in the mail.

According to Rebecca the owners were disgusted in Dominico's actions towards my sister and truly want to make it up.

Maybe they are hoping this promise of a voucher will silence me?

Not likely, I know our rights and if the matter isn't resolved truly soon, I will be calling a lawyer and the media.

I will keep you posted how it turns out.

Alright, just a quick update.

Bee and I received a $100 voucher and a sincere apology. We are going to take nanna and Aunty M out to lunch there to use the voucher.

And when I did return to the bar I saw nothing of Mr. Tool, perhaps his apparent issues in being human managed to get him fired?

I am slowly going crazy...

2010-04-01T14:54:00.000+10:30

(posted 5th Nov. 08. Old blog)

One, Two, Three, Four, Five, Six...
Switch...

So this event happened a few weeks ago, but I am finally settled enough from it to actually speak about it and I think it is a fitting first post...

Dealing with Tantrums...

A few weeks ago, my sister had her fiancé come and stay with us for two weeks, not that I minded, her guy is a real sweetie and understands her as they both have an intellectual disability. It was not having him here which caused the troubles, rather it was the fact at times my dear little Bee gets pangs of selfishness.

It all started on Chris' last day here, so I took them out to the shopping centre for their last day together before he went home. Bee had bought him a mug with his name on it as a gift for their engagement anniversary and it barely rung up over $25 dollars, ths when Chris bought her a present I insisted that he was not allowed to spend more than her, it wouldn't be fair... and after all her fiancés job doesn't pay overly well.

I took the two into a perfume shop, I was also looking for Christmas present ideas, and Bee saw a perfume she wanted made by Hillary Duff (her favourite actress) and decided in that very moment she *had* to have it; at $40 odd a bottle I wasn't so keen on it (and it smelt terrible) so I told her Chris couldn't afford it and she was not going to get it... this... was when the sweet, kind, friendly sister of mine suddenly grew horns and a tail and turned into a psycho bitch.

There we were in middle of a busy shopping centre (mall for any Americans which may read this) and my 'darling' sister had decided to turn on me, cursing me for not allowing her to have what she wanted, when she wanted it. It was partly reminiscent to the kind of tantrum a two year old may throw, but you can smack a two year old on the bum and nobody thinks anything of it, with a 21 year old woman you can't exactly do that without drawing some attention. Frustrating!

I started to walk off with her continuing to curse, bitch, moan and cry at me. I was called every name under The Sun and Chris was looking a little dumbfounded. People were passing by and some offered looks of sympathy but there were a handful whom glanced to me like I was evil when I told Bee to 'settle down and shut up'.

My calm and patience were quickly running thin after being cursed out for almost twenty minutes now without any sign of reprieve and how I didn't just turn and slap her is beyond me but I continued to work and threatened her with not getting anything at all if she didn't calm down, but that just managed to make things worse.

To escape the tirade I moved into a jewellery store to look at their wares and the manager could see how stressed out I was... and hear the continued crying and cursing from my sister outside the shop front. It eventually became too much for me after ten minutes and I turned to exit the shop, demanding Bee to come to the bathroom with me...

The Bathroom...

Within the bathroom things only managed to get worse. Bee decided she was going to walk 3 hours to get home or get a bus (not that she could do either alone, nor would I let her) and this denial was met with the comment "I am going to get a bus home and kill myself", it was in that moment I could not take anymore and slapped her, shocking Bee. I then demanded she went into the toilet to calm down.

Once her door was closed I broke down into tears, wondering what I could have done better or why she would want to push me like this. I called my mother to find this was not an isolated case... Bee has a tendency to act like a spoilt child when she wants something. it shocked me though, my sister has never acted like that with me before.

All was smiles though after we did find her present, a gorgeous little necklace with two hearts on it (the lady at the jewellers I had walked into earlier did a good deal for us, probably because she had seen how stressed I was.) It took me a few hours to actually settle from he ordeal...

Oh and a glass of Vodka and Raspberry when I got home...

How I didn't kill her is beyond me.

Welcome

2010-04-01T14:48:00.000+10:30

Well I suppose it is right to welcome everyone to my new blog and website. I feel quite adult, I even have my own domain name, that is not something I have ever done before. I will apologise in advance for the ads on the side, I know they drive people mad at times, but a girl needs to pay for her site right?

Anyway, that is beside the point. Quick introduction to me. I am Deanna. I am 27 years old going on 80 some days I think. I am studying a Bachelors in Criminal Justice and Criminology through Griffith Universities long distance student program. I like to role play online. I am an occasional WoWer (mostly my boyfriends fault). I was married at 21, divorced at 26 after finding my ex-husband and I had one too many things in common... we both liked guys. I am a survivor of childhood sexual abuse. I'm obsessed with music (mostly U2... let the flaming begin :-P) I love to sing, I play guitar... poorly... I have PCOS... I have a mum, a dad, a cousin who is like my big sister and I have a little sister.

With all that list of things, it is the last one which is most interesting and challenging at times; my little sister Bee, has an intellectual disability with some degree of physical, and about a year ago now after my ex-husband left I asked my sister to move in with me and I took over from our parents (whom were finally getting to travel around Australia in a caravan - a dream of theirs first ruined with my birth on their first attempt at it) as my sisters carer.

Now, growing up with her was a challenge, having my cousin/sister live with us was a challenge, dealing with school and my anger at my past was a challenge, hell... my ex-husband was a challenge too but nothing has ever been as challenging, rewarding and sometimes damn right frustrating as well as terribly humorous as trying to raise my adult sister, not that I would ever change the decision I have made.

Some days it is crazy, some it is sweet and some days I want the ground to open up and swallow me as some posts I am going to transfer from an old site will show. Thankfully I have a very loving, understanding boyfriend.

Anyway, please enjoy my blog and I look forward to hearing from you all. I will introduce you all to Bee a bit more later on.