Thursday, May 28, 2015

Sightloss and Grief...

Tomorrow I have to have a chapter written as well as two flash fiction stories. It's going to be an uphill battle this time around. I've spent most of this week gathering, reading, and categorising sources - and basically learning how to use the library facilities. I'm exhausted. I didn't sleep well last night, I have an upset stomach, and I've had many moments of just wanting to walk away.

I've been quite teary all week. On Tuesday I came across a library reference to a paper written by an old friend of the family about 7 years ago. This man died about two years ago. Suddenly, I felt flooded with sorrow because I couldn't just approach him and talk to him about my thesis, when I knew him, i had no reason to talk to him about Icelandic Sagas, but of course now, we could have had some very interesting discussions.

Don't worry, I am getting to the point of this blog post, I'm just tired, I've been awake since 4am.

Last night I became overwhelmed with grief. Like a surge of underground water finding a gap in the earth's crust to erupt from, the tears came from seemingly nowhere.

You see, I started using my cane all the time last week. I've had the cane for a few months now, but have only used it in unfamiliar places or at night because it really takes a lot of energy to use it. It's not heavy or anything like, I just am very, very aware of how I am perceived when I use it. I can see people veering out of the way to avoid 'the blind lady'. I loathe drawing attention to my vision impairment.

I've gotten by without the cane until very recently.

One of the first days I used it, the Grumpy Old Man and I had a meeting at the high school, and when I took out the cane the GOM asked if I was using it 'to gain sympathy'. I nearly hit him with the cane at that point.

You see, that is what I think people might think about me using it. Especially people, like the GOM who have known me a very long time and seen my get around without the cane. They might think I'm using a cane now to draw attention to myself, or to garner sympathy or for a whole range of reasons which have nothing to do with the real reason I'm using a cane now.

I'm using a cane because I'm going blind.

Just recently, I seem to be losing sight rapidly.

All my life, I've been near sighted, but I've had a certain range within which I could see things quite clearly. I could see details if I could get close enough to them.

That is gone.

It feels like it has gone in the past month.

I realised a few days ago that I can't see anything clearly now, I can't get my eyes to focus at all.

This image kind of shows where my vision has gone from and to in the past month (obviously, I don't wear glasses).

Or like this. You see I can see enough to navigate. I use the can mostly to make sure I don't trip on changing surface heights because I don't have stereoscopic vision and so I don't see things in 3D. I have always relied on relatively clear short range vision to determine edges of steps or level changes in front of my feet. My short range vision is no longer sharp enough to help me with this.

I've known this would happen for decades now, and so I thought I was fine with it. But I guess that was when it was some time in the undetermined future. Now that the deterioration has begun, it seems to be happening so quickly and I just can't keep up emotionally. Last night I realised I won't see the boys grow up. I'll be there, of course, and I can't help but this of my friend Julia who faces a much, much tougher reality in this regard. But, I still feel grief.

You see when the boys were little, I used to consciously spend time looking at them while they slept, absorbing every detail, because I knew one day I wouldn't be able to see the details. Years on from then, I struggle to recall those details. What if I forget what the boys looked like.

What if my last images of Erik are off a pimply faced teen who often has a characteristic teen poker face? At least with Erik, and Lukas, I have some idea of what they will look like as grown men. Bryn is a bit harder to imagine, and Ari is impossible to imagine. I won't get to see those faces. And the Grumpy Old Man, I won't see him grow old (I'm not sure he'd be upset by that thought, really, but for me it is upsetting).

I'm such a visual person. 

I see to remember. I can remember what I've read because I saw it, I can locate things I've read, because I can see where they were on the page in my mind's eye. I'm hopeless at retaining things I've heard. My auditory memory is pretty rubbish. How am I going to learn stuff if I can't see it?

So, last night I felt overwhelmed with grief.

I also felt very alone with this. I don't know anyone who has been through this. I used to know people but those friendships are gone by the wayside now. So, no one I know gets it. I feel like I'm leaving this world and entering another in which no one I know can enter. I have to do this by myself.

Tuesday, May 26, 2015

Red Pen Syndrome...

Some people seem to go through life with a red pen permanently attached to their hand. They are constantly drawing red lines through all the stuff they observe in life that they judge as WRONG. I see this on Facebook all the time, and I wonder how happy these people are in their lives. Every person, situation, and concept is scrutinised for what can be found to be wanting. Every thing is frowned upon or sneered at.

And everyone must be taught how to live their lives right.

Right is always what these people deem right, based on their own life experiences.

I wonder if they view themselves as specs of sand on a beach, or boulders.

Funny thing about boulders... Over time, they become specs of sand.

How does this process occur? Is it by was a hammer of outrage smashing through all that is found wanting?

No, it is by way of water, slowly, slowly, gently, gently lapping over the boulders - wearing them away with endless patience.

There are so many red lines. Lines in the sand that will forever be crossed. Cross people melting into puddles of cynicism.

Wrong, wrong, wrong. Everything is always wrong.

There is no joy in wrong. No appreciation. No love, respect, or compassion.

Wrong is brutal.

You fail. You're wrong and I'm here to tell you, to sneer at you, and to judge you because I'm a boulder and you're a spec of sand.

Red Pen Syndrome is killing joy on the internet. It's a tragedy of epic proportions.

Friday, May 22, 2015

Four Confronting Meetings...


It's been a long week. Looking back, I realised I'd had four confronting meetings this week - which would explain why I feel so tired today.

On Tuesday, I had a meeting at Uni with the manager of the Student Association about the behaviour of another student at the university towards me and a friend of mine. The other student basically lost the plot over a situation which was not of mine or my friend's doing, but as we were the only people in the student's vicinity at the time, we found ourselves in the firing line of rude and aggressive behaviour. Hopefully, in the wake of the meeting on Tuesday, there will be no repeat of that situation. For me, it was particularly distressing as I felt nailed to the ground, unable to move out of the person's way as they were abruptly moving furniture around me, apparently unaware of how this would impact me with low vision (this person knows me quite well, but they were not in control of themselves at the time).

On Wednesday, I had a much more pleasant, but still very confronting, meeting between myself and a guide dog handler. This was the very first step on the path to getting my own guide dog, and I'm so freaking excited about it! I don't go anywhere on my own anymore. My sight continues to deteriorate and with that I find I'm losing confidence. So, I only going out when someone can accompany me. I have started using a cane in recent months, but canes have their pros and cons. For me, one of the cons is the stimulation of the vibration caused by the cane being in contact with ground. Those vibrations in my hands really irritate me - much like when someone is sitting at a table with you and jiggling their knee and the table is rattling. Argh! Even describing it irritates me.

Anyway, the main reason Wednesday's meeting was confronting was that for years I've known my vision would deteriorate in my forties and fifties, but that was always some time in the future. The meeting on Wednesday made the future very much a matter of here and now. As well as that, the meeting was a bit like an interview, assessing my appropriateness for a guide dog. I passed the first round, and so I'm off to guide dog training school a week from Monday, to spend three days gaining hands on experience with a dog to see if I'm still suitable to go on the waiting list. They have to make sure I'm fit enough to have a dog, but also that I don't see too much to have a dog (if I see too much, I may be inclined to override the dogs training, rather than trusting the dog), and also to check that I have enough mobility skills without a dog to be in charge of a dog, that I'm not too reliant on the dog to make all the decisions.

The training programs are live in. So, first I'll live in for three days and two nights but then - if I go on the waiting list - when they find a dog they think will suit me (based on the dog's temperament, speed of walking, and also on any preferences I have for male/female. black/gold, escalator confident/not etc.) I will spend a further three weeks at live-in training with the dog (Monday to Friday, weekends at home).

Obviously, this now almost doubles the time I will be away from uni (and away from the Grumpy Old Man and the kids) in the second half of the year - from 4 weeks to 7 weeks, which will further push back my completion date. But, really, what can I do, I need this assistance and therefore I need this training. All quite confronting.

Thursday was the meeting with the primary school staff about moving the boys. While I sat out in the car with the kids, I still felt the full force of the confrontation in that I knew, pretty much, what the official school standpoint would be - and I was right. And it is both frustrating and disappointing.

Today, the Grumpy Old Man and I had a meeting at the high school with Erik, the principal and Erik's head of house. Primarily this was over an incident involving Erik and mate three weeks ago (which I won't go into), but also a discussion about how Erik is going overall with his studies because he's let a few assessments slide in Art Studio, which a VCE unit, and therefore attracts more attention if the kids slack off (he is actually doing better overall this year than last year, particularly in philosophy, but as Art is usually his best subject, I guess the staff are surprised he is dropping the ball).

I wish there was an injection parents could give teenagers to inspire them. Some teens are naturally inspired to pursue activities about which they feel passionate. Erik is talented in art, but I'm just not sure how passionate he is about it. The reason he gave for not handing in the assessments was that he knew they would be very easy to do (not challenging) and so he procrastinated on them. Sure, I get that. I have two flashes to hand in this afternoon, but haven't started on them, BUT he doesn't just do stuff last minute, he simply doesn't do it at all. Our high school is big on their students being self-motivated, but as the principal put it, Erik is still thinking 'old school'. Instead of going to staff and saying, 'I really want to do X!', he is resisting doing the stuff they ask him to do which doesn't inspire him. It's very frustrating.

So, that is the big week of meetings. I feel very drained, but life goes on and so must I.

Thursday, May 21, 2015

There are no guarantees this won't happen again...

This morning, the Grumpy Old Man had a meeting with the assistant principal of our current primary school, and Ari's teachers. We had initially requested a meeting two and half weeks ago to ask, again, if Ari could be moved to a different classroom as we have not been happy with his social interactions in his current room. The principal and assistant principal basically took their jolly old time responding to our request.

The policy at the school is that parent requests for children to be moved will not be supported - and apparently there is no reason they accept as valid, which to me is a sure sign of inflexibility and not being particularly interested in the best interests of their students. I should say here, I sympathise that there are parents who badger schools about letting their little diddums be in class with their best friend, but this was not that kind of situation at all, in fact, we were attempting to separate Ari from his besties.

Anyway, as it took the principal and assistant principal so very long to respond to our request, despite multiple reminders from Ari's class teachers, we eventually decided we really just needed a more responsive situation for Ari. So, we started looking at other schools.

So, when the Grumpy Old Man went to the meeting this morning, it seemed like a moot point. Still, they wanted to know why we were moving the kids. The Grumpy Old Man related that we were not happy with the social situation in Ari's class a year ago when we asked for him to moved, but had accepted that our request was denied, and given the teachers a chance to 'implement strategies' to try and deal with the situation. In the mean time, Ari's wrist had been fractured in a school yard altercation and we had had reports that he was as distracted in class as ever, if not worse.

So, with the behaviours having become further entrenched, we felt the best recourse was to move Ari to an altogether new environment.

The assistant principal's response to this was, 'Well, there is no guarantee this won't happen again at the new school!'

Of course, she is absolutely right, I cannot deny her argument.

But here's another take on that same point...

We can guarantee that if we don't move him, things will not change.

We can guarantee this because we gave the school a year to effect change, and they were unable to do so.

We can guarantee that if no change happens in this situation, it will be to Ari's detriment and we can guarantee this because he has already suffered physically and socially as a result of no effective change in the past year.

The future is never certain, but if you continue to stand in the river, you will continue to be wet.


Monday, May 18, 2015

Strictly Ballroom!

On Friday night I had the pleasure of attending a performance of Strictly Ballroom at Her Majesty's Theatre, thanks to sponsorship by Nuffnang!

It was amazing!

Even as we entered the theatre to take our seats, we knew it was going to be a special night. All the seats were rainbow coloured, and I joked with my friend, Robbie, that we might be expected to participate in the performance in some way. That was a pretty good guess on my part!

At this point, I would love to show you a picture of us sitting in our seats, but blue is not a particularly flattering colours, especially when reflected of our shining faces, and Robbie made me promise never to let the photos of him see the light of day... I'm such a great friend, really, I am...

The show was dazzling, and I'm not just talking about the sequinned dresses. It was wall-to-wall gigantic personalities with the broadest of broad Aussie accents. Of course, there was also dancing, a lot of dancing! In particular, I was very impressed with the dance work of Fernando Mira who plays Rico, father of Fran. His flamenco dancing was flamboyant and dramatic and made my heart go pitty-pat! Bravo!

The voice of Natalie Gamsu, who played Abuela, Fran's mother, was astounding in it's strength. It filled the theatre, and I actually think I heard the doors rattle a little, too.

The use of set of clever and affective, moving us from within a competition setting to the home of Fran's parents behind the milk bar seamlessly. 

The audience did get involved in the performance, but to say how would be giving too much away - you'll just have to go see for yourself!

After the show, patrons were invited to meeting cast in the foyer and donate towards crisis relief for Nepal. This was a great photo opportunity for the crowds, but I prefer my place behind the camera.

If you love musical theatre, you will love Strictly Ballroom on stage!

Monday, May 11, 2015

Stepping into the void...

Today we told Bryn and Ari's teachers that next term they are starting at a different school. Apparently, they were surprised, but they shouldn't have been.

Our boys have been at this primary school since January 2007. When we enrolled Erik and Lukas it was with trepidation, but also optimism. Trepidation because we had planned to homeschool and felt that formal education was always going to be a compromise between what our children needed and the 'greater good of 400+ students'. This has been the case for the past 8 years, but Erik and Lukas were both extremely happy at the school, socially, and so even though we asked them regularly if they would like to be homeschooled, they never took up the offer.

There were often run ins with the school, particularly over our financial constraints. The area in which our primary school is located is an area of financial affluence, but we are not a financially affluent family. There were times when we couldn't afford book packs before the start the school year, or school camps or incursions or excursions, and while not making allowances for this, the school also often made us feel like an inconvenience when they had to find alternative accommodations for our kids while the other kids were on camp, or doing swimming etc.

But our older kids were happy with their community and their friends, so we stuck it out.

For Bryn and Ari the social aspect of school has not been as fruitful. Both boys have struggled with making friends, in different ways. Both boys are able to make friends, but also seem to be attracted to, or attract, dominant, often manipulative personalities into their friends circle. For Bryn this has meant a lot of sadness, but also some poor choices on his part as he's tried to navigate impressing his friends. For Ari this has meant that to play with one of his friends, who is as energetic as him, but also quite lovely, has meant also playing with a child who is in his face all the time, and will hit him if he doesn't comply with that child's wishes. Ari has struggled with anger over this situation, feeling frustrated and powerless.

A year ago, we asked for Ari to be moved to a different class, as we felt the dynamic which was developing in his class was not to anyone's benefits. We were denied that request with the standard, 'If we moved every child parents asked us to move, we'd be forever moving children around.' I'm sorry, but there is moving a child so they can be in a class with their bestie, and then there is moving a child because of toxic relationships occurring in that class - these are not the same thing.

We were told strategies would be implemented. For a while, things seemed a little better. Then one day Ari was pushed over in the playground and fractured his wrist. We accepted that that was an accident and said nothing more about it.

This year has been one of great upheaval in Ari's class. One of his teachers left at the end of last year to having a baby, and was replaced by another teacher who was also pregnant. Subsequently, that teacher has had many days off sick, and there has been a succession of substitutes who don't understand the dynamics in the class and don't look out for or head of trouble. I guess substitutes are only invested in the day they are actually in the classroom. They are place holders until the real teacher comes back.

Consequently, Ari has been extremely distracted in class, particularly this term. In the playground, he has been targeted for being small over and over again. When he retaliates, it's a mark against his reputation, and obviously we don't support him retaliating, but with no proper intervention or prevention in place, I understand his frustration. I feel so sad for him, and angry too.

We asked for a meeting to discuss the possibility of moving him again. That was a week ago. This morning his teacher still hadn't heard back from the vice principal. This is endemic of a school philosophy which does not put the well being of its students first. I realise those are strong words, but what other conclusion can I reach.

Perhaps it is that we do not pay voluntary fees because we cannot afford them?

Certainly, this primary school is in the business of business. The fees for the school our kids are going to be going to next term is half the size of the school they are currently at. The offer more to the students in terms of student oriented programs (two art shows a year, a writing competition, an industrial kitchen to cook in, a choir to sing in), but only charge half as much. They invite their students and families to make use of the school grounds on the weekends and in the holidays, while our school strictly forbids students to enter school grounds unless they're attending a program at the school. Our currently school forever has its hand in parents pockets, but when a parent asks for something in return, they are faced with a wall of silence - or worse, on one occasion I left a message with the vice principal that I needed to speak with her, and when she rang me, after I said hello, she literally said, 'It's Mrs X, what's the problem now?'

If asked why we're leaving, my answer will be simple, 'We're fed up.'

Still, I feel sad. I had thought all our children would go to this school, and all of our children would have an unbroken experience of primary education. We've weathered a few storms with this school, but ultimately, even though Ari is a very bright child who is doing exceptionally well, academically, we feel his social interactions are being ignored and this will be detrimental to him if it continues. Bryn will also benefit from moving away from mostly toxic friendships and hopefully making much more healthy friendships at the new school.

Good Job!