Sunday, September 29, 2013

We don't want special treatment, just the same level of dignity as others!

Well we have been invited to another meeting to help facilitate this path! Or Area CP govt relations lady will be there to give a mini presentation and support us.

Oatie starts his skating lessons next Saturday!

You would think negotiation for a WARM place that he can get to, to put on his skates would be a breeze, like how hard can it be to find a room, in a "fully inclusive" (they are still working on this point). hence my fight! to find a place for them to put on their skates?

The only room which is really suitable is the referee's room. Consider this, we have 3 ice sheets, one is curling, but the other 1.5 is hockey. We have another ice rink in town too which has large hockey matches at it and then there is one built 1km from our house which is going to be a Elite Hockey centre.

I am not saying I don't like hockey. BUT! when our guys are figure skating, we are on the ice or for the learn to skate programme.

So I am going to propose that this most accessible room be turned into a FLEX room, where by, the Hockey Ref's can use it, and then the MALE figure skaters can use it and so can people who are in wheelchairs.

I know that the argument will be that they (handicapped people can get changed in the swimming changing room). However, the LAZY non handicapped folk, don't put their shoes on the stacks of racks on at the rec centre on the way in to the swimming changing room. So you CAN'T get a wheelchair over them very easily! I have to say, I've taken a leaf out of my friend Phil's book.... I now ROLL OVER THE SHOES, as if they don't want them damaged, then bend down, pick them up and put then on the wrack which is another 3 second's worth of EFFORT!. If you can't be bothered to do something that takes 3 seconds then I can't be bothered to move them out of the way!

So I've been fighting for a changing room for handicapped people!

Thursday, September 26, 2013

Success at the town...

Well, we had a great result from the town, we even had our area CP govt relations turn up to support Oatie! Oatie went looking super cute, and when he was asked by the Mayor off line if he had girl friends, Oatie blushed and said no... (all the girls in his class LOVE him!) so much so some of the other boys are jealous. The 6 year old girls LOVE mothering him!

So they basically said that they would look to putting me out of my misery with a dedicated path! Then the kids were all under the weather, Oatie hasn't been at school for a week now.

The off road wheelchair people got back to us which was great.

My friends dad had emergency heart surgery so that was a bit shocking. I found out I was lied to by a friend quite badly... that was interesting...

The disabled skating pilot is going well so far which is good.

Dreading some parts of the next few months... we are looking to sell our home (I hate hate hate selling houses, in the past it has gone wrong/badly) each time I suppose the last few weeks have been a rollercoaster, some ups, some huge downs, and we're just hanging on for the hell of it! Sometimes, I wish I could just let go and just fall off! (just like some of you).

Then trying to keep the balance of everyone and everything... I just now want to smudge our house so badly.

The thought of selling our house on top of everything else, just makes me feel defeated, to be quite honest, how am I to keep a home in immaculate order, with 4 kids, one's a baby, one's handicapped and my husband works really long hours and arhghgghghghghh. 5 cats, mine is peeing and pooping everywhere so the carpet now STINKS! We need to sell our house, for a whole multitude of reasons, the most being wanting or needing to rennovate it so Oatie can use wheels inside the house if he wants to. Having the extra money to do this... Having a main floor bedroom for him... a bathroom that he could use himself one day rather than mummy washing him as a teen... I would also like to return to "school" myself, I have done since i was 21... but I don't know what to study. I know I'd like a different direction, one that works around the kids and I don't have to do a downtown commute.

In-between that the kids principle seems ready to "snap", I don't know why, but she is really short this year,...

Oh and my cats dying, I've had her since I was a teenager and she is shrinking each week. She isn't in pain, but it's painful for me to watch her die. I've tried to tell her she doesn't have to hang on for me (we've been through everything together since I moved out of home).

Being ill with a fever last week really knocked the wind out of my sails. I could really do with 3 weeks, all inclusive, on a beach, with the family with no technology with us. (last year it was 2... but this year it's three). If we ever sell our house, that is one of the first things I might do.

and my dad's family is here this weekend, but they are all loaded and would expect me to wine and dine them... but with the upcoming cost of the latest wheelchair, so I can get Oatie to and from school. I'm like..... I'd like to see maybe one of them, his sisters and brother in law are travelling by road ... but a Tim Horton's is MY budget at a stretch! And no, you can't even say any of that to them, without a feud starting up and I mean a crazy feud... with politics and drama and all that.... with cherries on top, bells and whistles and my dad is so lovely but his family are really odd.

Oh and yes, I felt worse last week, when a really really lovely, but new coach, asked my son to lift my daughter on the ice and whilst my mouth was opening as they have never done on-ice lifts as I was told not until he is 12!!! his feet went out and yes his head glanced the ice. Worst nightmare having one brain damaged child, but trying to not wrap the others in cotton wool and let them pursue their passion and dreams... but yes I felt sick and he didn't have a head ache, or concussion or anything... not even a graze... but I felt sick... i felt really sick and well he is totally fine... I'm not sure that I have emotionally recovered from it yet.

Ok Rant over and out!

Friday, September 20, 2013

Life's a climb but the view is great - I like to hope it is...

Well, what happens in a usually week of a 10,8,6 and 0 year old... Mum falls ill with fever for 3 days only to have Oatie do the same... lol! My husband has been great, picking up the older two, doing the lunches and his normal job too!

On the day I was falling ill, I felt so rough pushing the wheelchair across the field, that I just felt drained! So I was so annoyed, I decided to email every single town councillor in our town.

I have been basically ignored for 28 months, they apparently at the town did something, and I was told that my plea in June was told to the rest of the council but the councillors who emailed back, hadn't heard of any mention of my plea??? Hmmm smelling a rat?

Well, we get a 5 minute audience with the town, after I created stink. To ask that a path be put between the kids school and the rec centre, so I can push Oatie or his aids can to gym class, swimming or skating. The Mayor doesn't see what's wrong with going the long way round, which in Winter can take from 10-40 minutes depending on how fabulous the snow removal people are, like they clear the road but dump it on the sidewalk.. or one school clears it and dumps it in front of our school!

On Foot you can get to the rec centre in one minute! if you go across the field (able bodied). So why would they think that I would think that taking 10-40 times longer would make me be filled with JOY? No it doesn't make me be filled with Joy at all!

It's wrong and just plain wrong! The town wants people to use "human powered transport" over car usage, so this fits right in with that!

So we are going to go to council or I should say my husband is, as he is much more concise than I am, he's also over 6ft! so a bit more menacing looking than me lol!

We have some letters of support from a mum who's a friend of mine, who's daughter was in the last paraolympics standing up for Oatie, and another friend of mine who is from down under who is also writing a letter in support.

One of my "friends" just didn't get it.... at all... at all, and fine, don't agree with me, I don't mind that, but to keep on going and going and going at me WHY and what the problem was, I just wanted to do as my good friend Phil says, WHACK her with the wheelchair. I kind of came to the conclusion that a Friend like that, who needs an enemy.

The ones who didn't write a support letter as I sent out a blanket thing saying if people wanted to then please do but don't feel obliged. I get it that people are busy and some people might feel uncomfortable going against the Mayor or whatever, or maybe some people believe that disabled access is fine as it is. I don't mind that, but the one who kept on going and going, URGH, no thank you!

This "friend" I have done so much for, and well anyway, whatever!

So I'm looking for an all terrain wheelchair and I think I might ask my ex fellow Scouter who's an engineer to help me build a Sledge kind of thing to pull the wheelchair...

Oatie might be in wheels, but I don't want to be confined by them and neither does he!

Thursday, September 12, 2013

urgh, overwhelmed and favours that backfire lol!

Well we had back to school. They have put the "allergic to the world" aide back with Oatie, her face looks like a wet weekend with -40oC blizzard on top! I'm not kidding, she reminds me of the "sad clown" kind of depressiveness. How can someone like that even enJOY kids? my older two said she's always grumpy and short too.

She won't let my older two even say hello to Oatie, she shouts and snaps at them. This same aide, takes away his own personal property book from when he gets off the bus and doesn't give it back to him so then he's sat there on his own, with no one to talk to on the bus and noting to do.

If you didn't know, disabled people on the bus get stuck up the front or back and there are no seats near them! JOY!

He spilt his fruit cup the other day and just left him in it, didn't change him, and there are swarms of angry wasps out at the moment, just yesterday I got my very first wasp sting in my life !

So, we are having a meeting tomorrow with all 3 people who help to look after him. The other two, we've never had a single problem with them, it's this one lady and now its likely that good two will think it's them, and it's not them at all, just this one lady!

They don't understand his handicap, and they asked me to do a presentation on Oatie, but when i asked for parameters such as who is it aimed for, kids, parents, teachers? I was told she has to ask the BOARD and that was that... nothing for an entire YEAR!

They keep on thinking the more he walks the better he will walk and we are like errrr NO!


Last Tuesday I felt really sick with feeling overwhelmed! I hate school starting up from all the BS (like above). Hauling the 5tonne (well it's not 5 tonne but to me if feels like it is) in and out the car....

Then on top of that, the mayor didn't put a 50 feet strip of concrete path in... so to push him from school to the rec centre is a tough job on the grass, i don't know what to do in the winter!!!!!!!! if I don't I have to push him 200m back to the car which in the snow takes 30minutes! then put everyone in the car which takes 10 minutes, drive for 28 seconds and get everyone back out again, another ten minutes. To travel the distance of a 2 minute walk for an able person! THANKS MAYOR! and yes he's up for re-election, but we can't vote yet! so I can't even vote against him!!!

Then I offered to help someone out which has totally backfired, they took the pee, to the nth degree and now I'm lumbered with something I didn't pick or choose and is 50 times the work! kind of abused our "friendship-goodwill gesture" I agreed to one thing one way and now it's totally different! So I can't even make it as they didn't buy enough material and I only offered to help as they said that they were HARD UP, we all know what that feels like so I said I would help them.... as it turns out, they are not hard up at all!

I had another one of those with a different something in the Summer too well it happened twice....!

YAH! lets go and take advantage of Oaties mum, she has so much SPARE time on her hands with her two eldest, Oatie with CP and a baby! TWICE!

So, after I get this latest advantage taking... I know it sounds hard, but I'm going to start to say NO! unless I'm in charge of something!

Rant over and out!

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