Wednesday, September 29, 2010

On a happy note

The real positive I took from yesterday is that for the very first time, I had to pay Stef pocket money!! Our kids get money for doing chores, and for the first time ever Stef unstacked the dishwasher and cleared the table!! She was as pleased as punch with herself and carefully put her money away ready to go to the shop to buy her OWN lollies! She has a real love of chocolate coated honeycomb and I just know thats what she will choose when I take her to the shop (I made sure I paid her enough to buy some). Yesterday she was really switched on. Lots of words....woke me up with a kiss on the cheek and a "wake up sleepy" "hungry" "breakfast". She was quick at making choices.
Yesterday I was busy writing emails to our local councillors about our parking permit issues. Surely being a danger to herself or others should be enough to get a disabled parking space. Its purely ridiculous and I should not have to go back to my doctor to get him to lie and say she has trouble walking. Thats shit!
Anyway, off to work today. My mum is looking after the kids so I got up pretty early and did a bit of housework so that at least she wont wash floors. I worry about my mum doing too much. She is 77 and a fall on slippery tiles is the last thing she needs, nor does she need to carry heavy washing baskets. Must get going, time to get the act together....One foot in front of the other!

Tuesday, September 28, 2010

Fighting the system because the system just sucks!

Why is it, that because Stef's disability is mental rather than physical, she gets so much less help? She can't wipe her own bottom, bath herself, dress herself properly, brush her hair, or clean her teeth properly...why then doesnt she get the same support as a child who isnt physically capable of doing the same tasks.
This week, City of Greater Geelong in their wisdom wouldnt give us a disabled parking permit..Why? Because Stef can walk......but hey, we have to hold her like she is handcuffed to us in a carpark....and as she gets stronger, that gets harder.
What did they send us instead...a carpark permit that gives us double the time...doesnt make sense when the most we ever spend shopping with her is as quick as possible...get in get out before the overwhelmingness that sometimes get her hits.
The same goes for in home respite care...she would get far more if she had even a tiny physical disability than she ever gets now. It just sucks that there is such a division with support available for physical vs mental disabilities. OMG, she is one of the most severely afflicted kids in Geelong and yet we get stuff all! Not even help with a speech device.....grr.....it just gives me the shits! Autism is not sexy....its not like a baby seal...all cute and cuddly. Its a shitty horrible frustrating and debilitating condition and not having a voice must be the most frustrating of all disabilities. I know, I have tried not to speak for a day. I could handle being blind, a few weeks with eyepatches on proved that (acid burns to the eyes in a lab accident), I can handle being deaf, but to not be able to tell people what you want, what you feel, or what you dont want would really suck. To have someone exert their wants or needs on you without being able to express what you want or dont want...how frustrating. Why isnt a voice seen as being important by the stupid people who create this hierachy of disabilities...why do they see that a bung knee or low muscle tone is worse than not having a voice. Who the flick are these people who decide this....Id love to gag them for a day, put them in a strange place with no reading ability and fill em up on water....and just see their frustration when they cant find the toilet. Why isnt having the mind of a two year old in the body of a 12 year old seen as a disability??
If it sounds as if Im pissed off...its because I am. I am so sick of fighting a shitty discriminatory system which does not understand my child's disability. It happens at school, with the council, with respite care services and support services....assholes

Anyways, thats my soap box for the day. trying hard to move on this morning. I have a lot to do, but my mind keeps coming back. I guess I just have to keep putting one foot in front of the other, do the stuff I have to do and just keep on keeping on.

Monday, September 27, 2010

Low energy levels suck!

At the moment, I just feel flat. Tired, sick of fighting and just so disinterested in everything. It just sucks! I'm not sure whats going on. Maybe Im just a bit burnt out. Right now, I feel as if I could sleep forever and everything seems like a huge effort.
Im hoping that the change in whether lifts my spirits a bit and gives me a bit more energy. I got out in the garden yesterday and weeded my vegie garden. At least its a start. Im taking Stef today to get new seedlings and will get her to help me plant them. She gets really excited about gardening. She does a bit at school and really enjoys her time gardening.
Got a fair bit of work to complete this week. The accounting firm job is coming to an end I think and they want it up to date as soon as possible. Im probably about 15 hours from completing. I will do a lot today and probably tonight as Steve is heading off to Sydney. The sooner I get it finished the better....I need to tick it off the list to give me a sense of achievement.
Steve is travelling a fair bit, maybe thats a reason why Im feeling a bit flat..its hard when its all left up to me constantly and have little time to do the things that I like to do too. I think maybe that I need to enlist in some cooking classes or something just for me or get back into sewing a lot more. Just something thats purely for me.
I'm making a concerted effort not to drink much at the moment too. I just found that I was drinking too much during the week...not much, but I never want to rely on it as the only way to relax. It would be just too easy to fall into the trap of drinking everyday. Oh and I am on champix which is a drug to help me give up smoking. I have 10 days left of chuffing and then its finished. I want to get rid of yet another vice. I hate it, its expensive, it stinks and I want to be healthier. I find too that it increases my anxiety levels. I know that I will feel like crap for a while, but the long term I know I am a happier person when I dont smoke.
The kids are all sick with colds. Not major, just colds. At least I havent picked it up too.
Oh and last night I met my beautiful great nieces for the first time. It felt so good to hold them and bought back major memories of holding their mum so many years ago. One is very much like her dad....a total cheeky little imp with a huge smile. The other is more like her mum and in that sense, a bit more like a mini me. Sarah and I were always very alike. Both redheads I guess, and I used to spend so much time with her as a baby being just a teenager then with so much time to give. Oh how much I wish I could be so much closer to the girls so I could be the aunty to them that I was for their mum. I lavished Sas with so much affection as a littlie....sang songs, read books, took her to the park and she said yesterday, that she sings the same songs to the girls that I did with her. It bought a lump to my throat that she actually remembers.
Jack went on a fishing club trip with Grandad on the weekend. He had an absolute ball. There were other boys his age there and they kicked the footy and had so much fun together. For a kid with autism he really is able to make friends so easily. Its why I question the aspergers label ...I think he really is just ADHD and doesnt have that many autism traits at all.
Anyway, on with a new day.....Stef is already up and in the bath. I really need to do so much today but especially need to get her out of the house for a while. She is starting to go stir crazy being the second week of school holidays. The lack of structure adds to her stress.

Wednesday, September 15, 2010

Happy Hump Day!

It's Wednesday already????
Where are the weeks flying by to....I really don't know.
Sunday my darling girl MJ turns 14. I can hardly believe it. She is growing up so fast in lots of ways. I know she has so many extra issues that other kids just don't face....and face it, not a lot of my time either. She really amazes me...as she is a pretty well rounded, responsible teenager.
Had a phone call from my exboss......you know the one, where I had the bitch from hell as my superviser and quit it on the spot. Turned out, he sacked her and now she is suing for wrongful dismissal. I was sad that I had to leave the job...and to walk away without even contacting the owner afterwards. Anyway, all is sweet. It felt good to apologise for leaving like I did, but it was certainly understood why. I hate burning bridges like that. You never ever know what your future brings.
Work was busy today, but in a good way...Nothing is ever stressful there. Not sure if its the fact that you can just look out the window to catch your breath or what, but its quite a relaxing place to work. Even the dog coming to say hello makes a difference.
We had some lovely news last night......Stef was so excited about it and really understood. Even repeating it back to me with sign language....roll around March......so exciting!!
Brent is finally getting his shit together for SACs....hopefully he will finish them all before school holidays. Im so sick of nagging him.
Oh and my big brother rang my mum on the weekend. I am so relieved!

Monday, September 13, 2010

A couple of valuable lessons!

The last week was nothing short of difficult. Putting it bluntly.....it was crap! I have seen the worst in some people, but I have also seen the very best of others, including myself. It also spelled out to me what is just so important and why.
I had a huge weekend. Had Rainbow club on saturday and on the way home, hit a pot hole and blew a tyre...so funny. I pulled over, and Jack in his drama queen ways goes, "Oh, who is going to save us" I said...Jack, No one will save us, we have to save ourselves mate. I proceeded to get the spare out of the boot, the jack and the tools...and no sooner had put the jack under the car, but a truck pulled up, a bricklayer got out, and a man came along and just said...Move over, I will do this and have you back on the road in no time. Its good to know that I could save myself, but that other people cared enough to step in...how many times I have stepped in to help others......I guess it was my turn. Anyway, we got on our way, and I hit the corner just near home and realised that I had a second flat tyre. Damn Damn Damn!
On Saturday though at Rainbow club, I met a man from Werribee who is wanting to help start a club there. He was interesting and is also involved in a volunteer run respite care house which he says that Stef would enjoy so much. It runs on a slightly different line to DHS houses, there is one trained staff member, but the rest of helpers are volunteers, there are no permanent residents (always at DHS houses there are one or two because of families who cant cope with their behaviour). This house is run on money donated by businesses and volunteers. WOW!
Anyway, on Saturday night we went to the pub and danced the night away and got home at 1am. I then got in the car, and went to the Rainbow Club Swimathon to get into the pool at 2am. I swam until nearly 5am. Oh dear, muscles are so sore now! I kept moving the whole time I was in the water and I was told that I probably swam more that 5 km and after dancing as well and little sleep, lets just say Im tired and sore...At the swimathon though, we had a blind marathon swimmer. He was just awesome and it was a pleasure to meet him. I was talking to him on Sunday, thanking him for making the effort to help us in our swimathon to raise money...and he pointed out to me, that hey.....I swam 3 hours, and helped with the organisation of it all and that he thought that was marvelous in itself and that he really got why it was so important to me personally. I want all special needs kids to have swimming lessons...drowning is a real risk with children obssessed by water but not having the safety skills drilled into them. He really got that.
Today I am without a car as Steve has taken my tyres this morning to be replaced. Stephanie was throwing up yesterday and so Im not sending her to school today. The other kids will just have to walk.
Steve spent the weekend doing washing.....trying to catch up on all the stuff that I couldnt get done last week. It was the week that was. He really is marvelous!

Friday, September 10, 2010

To do list a mile long!

Today I am sooooooooo busy. I have a to do list a mile long, running all over town.
First up is a talk on behaviour at Barwon Valley School. I'm looking for ideas to deal with Stef's behaviour at the moment. We need to curb her meltdowns with her personal hygiene and the raiding of cupboards, and the pulling out of clothes from her cupboard and the trashing of her room. She is really beginning to be a handful!
I then have stuff to do for rainbow club. We have had checkbooks and money go missing....so I need to get to the bank to cancel them. And I have to get raffle tickets organised and put on the front desk at the pool. I would love the prize..dinner for two at Gordon ramsays and accommodation at the casino.
Then, I have to go into work for an hour or so to tidy up stuff. Yesterday was just a pain...alterations to pays at the very last minute..super payments that need to be made and workcover stuff. If I dont go in, these things will make next week too busy.
I have a mountain of washing to do.....and not to mention housework!
Oh..last night was funny. Went to a talk by a local paediatrician and gynae about puberty for Stef. I realised I knew both the doctors when they were students at Melbourne Uni..we had a good laugh about it all afterwards. Its times like these that I realise what a varied career I have had and just how many people I have come into contact with over the years. I have been referred to this paed and when I said that she said.....great, make sure they give us a double appointment and we will have a coffee and chat and that she had heard of our family before (result of deakin studies we participated in). She understood too why we need to change doctors with Stef and we are both sure we can come up with better treatment programs for her. All good stuff!
Anyway, on with the day.....no rest for the wicked and all that!

Thursday, September 9, 2010

Yesterday was a day of downpours, but with beautiful rainbows

Yesterday was a tough day..
I had yet another car accident....nothing major, just clipped the back corner of the car in front of me when my foot slipped off the break pedal. It wasnt until last night that I saw the truly funny side of it. Had a really good laugh about it last night. Here I was dressed to the nines ready for work, standing by the side of the road with the bogunest of boguns...she looked like crap...flanelette pjamas, moccosins, hair not done and the language that came out her mouth.....Honestly, this woman had no class. Then it struck me.....hey I really do ok.....here I am ready for work, looking pretty damn good with all the struggles we face and the extra issues, and I still manage to take care of myself and show a sense of class. In the end....a car is just a piece or two of metal, a bit of plastic and glass thrown in for good measure, insured but just a fricking car. Should have recognised her bogunness when I saw the personalised number plate. I realised that even on my worst day, I would never leave the house looking like that...no matter what has happened!
Anyway, after having a pretty busy day at work, one of the mum's at school was compelled to give me a bunch of flowers. She said, she had them with her, and all of a sudden just had to give them to me for no particular reason......sometimes I think that the power above gives you signs of hope and goodness....this was one of them.
Anyways, today is a new day.....full of promise still.
Tonight I am going to a Puberty workshop with a peadiatrician...just trying to get through my head what awaits us with Stef. At least I will get to meet the paediatrician I will be taking Stef to soon. We need to change doctors because our current one really isnt giving me much confidence or much alternatives regarding Stef..he is getting old and I think a woman will be much more in tune to the young stef's needs. Tomorrow I'm going to a talk about behaviour......Jim Crawford. I met him a while ago..about 10 years ago. Has some pretty contraversial viewpoints, but he deals with the toughest behavioural cases here. (Shaz, maybe you should come with me!!) I have used lots of his ideas over the last 10 years but need some new ideas to deal with the behaviours puberty is bringing us. I'm trying so hard not to freak out about what is on the way...
Working today and nearly ready before getting Stef up, always over dressed lol, but thats me. There is something about looking good going off to work which gives me a boost. Always wear makeup, hair straightened and dressed up. A lot of the other staff wear jeans, but for me, I need the business attire to make me feel professional.....Met the boss from Mildura yesterday....very quiet man, but I know he fires up pretty well.
On with the day!!

Wednesday, September 8, 2010

Happy Hump Day!

Well, its Wednesday again...the weeks seem to be flying by at the moment. I blink and the week is over again I guess because I am pretty busy.
Jack has been at camp and Steve is at a conference...the house is so damned quiet. I certainly know that Jack is my noisy kid. I have missed him a lot. He will always be my baby boy and now I can understand my mum introducing me to her friends as her baby (at 40 years old mind you). I hope he has had a wonderful time. He really is very independent. I must start teaching him how to cook. I have always vowed that my kids would be able to cook by the time they left home (I could barely boil water) and I usually start teaching them at about 10.
Melinda got her report yesterday...it was very good.....Most subjects she got Excellents..but her disorganisation holds her back so thats something we really need to work on.
I have work today...its 8.10am and I'm ready to go. Just waiting for Brent to get organised. Today I move into my own office (have been sitting in the managers office until I was trained...at least now I can have the radio going while I work. I find that I work so much better with music on. Its going to be 18 degrees today, gradually warming up a bit now that Spring is here. I can't wait until its nice and warm again. Soon the vines with have green leaves and the view from my office will be changing yet again. Its so nice to look out the window occasionally and see the valley below and the vines and trees, the dog running around catching rabbits....so much different to looking at the wall or the building next door like I have in previous jobs.
Melinda is staying home sick today.....says she is sick in the stomach. She hasnt missed much school so I guess its ok to have a day off today. (she didnt look sick, but who knows)
We are eating fresh vegetables out of the garden at the moment. Its great. I can feel the goodness in my energy levels. Yesterday it was brocoli, snowpeas, spring onions and bok choy, all out of my garden. I really must work in it over the weekend. I just love really fresh vegetables.
Anyways, time to get ready and go.

Tuesday, September 7, 2010

Success!

Yesterday I had a run in with our electricity company and won. You see, they had taken two payments this month for our electricity. We usually have a monthly direct debit because our power bills are astronomical. The usual repayment was taken out, and then two days later, another payment much higher was taken out. I pleaded my case, and explained that the company would look like absolute assholes if I took it to the media having 3 autistic kids in the house. I got my way, the second payment should be reversed by the end of the day today!
I'm having a good old declutter at the moment and a spring clean. One room at a time. On the weekend it was the lounge room.....OMG, the amount of crap in here was huge and then I scrubbed the walls and gave the carpet a shampoo. It looks like a new room. Today I am working on my laundry...the accumulator of all gross crap in the house not to mention my fabric stash. I really must make a concerted effort to go through it and toss any pieces that I cant see myself using. There is about 5 boxes of fabric.
I have heaps of work to do too.....with Michelle coming over so often, I really have been slacking off on my casual work. Steve is going away for the rest of the week, so I think I will put a huge week in on it to get it out of my hair......day and night until it is finished..time to get my ducks in a row.
I am gradually becoming a bit better at organising my shit...and maintaining my focus on the job at hand. The house is still a mess, but it didnt get dirty overnight, so its not getting clean overnight either. You can't clean clutter and there certainly is a lot of that right now.....both clutter in the house and clutter in the mind.
Anyway, on with the day!

Monday, September 6, 2010

Feeling a bit drained!

At the moment I feel just very drained.
I have a beautiful friend...desparately in love with her husband who walked out on her. Asshole...but how do you tell her, that he is an abusive creep. He verbally abuses her unmercifully with language that I wouldnt call my worst enemy and worse than I saw with the roughest nastiest men I have ever met. He does this in front of her beautiful children. Never apologises for it afterward and thinks he is God's gift to the human race.....Sorry girl, but he is a piece of crap who I wouldn't have back if you paid me all the fricking tea in china. What sort of example is she setting for her beautiful girl of how a relationship truly should be or how much self esteem she should have or how much respect there should be in a relationship.
This girl is leaving me drained ...just how much support can I give someone who puts up with crap like that...as a mate, I love her dearly, but hell, I am just so tired of it.
Anyway, on with my own dramas.
Brent is being incredibly slack at school and if he isnt careful he is going to fail at least two subjects. I really have to get on his case a lot harder, but hell, I cop shit from him behaviour wise whenever I have to sit on him. His bedroom is incredibly disgusting, even by my standards..
Jack has gone away on his first ever camp today. He was incredibly excited about it. Oh it was so funny, he went off with his huge bag (packed by me) but when he got there, he panicked when he saw the other kids sleeping bags and chased me through the school yard..."Mum, I havent got my doona or pillow".......i had to go back with him and show him that he had his sleeping bag, pillow and favourite blanket all packed away in his bag. He ended up forgetting his raincoat though as he had taken it out of his backpack...not good when it has rained pretty hard for 3 straight days, but hopefully it will be good weather tomorrow.
Mj is being the total nethead like usual. Spends every waking moment on the damn computer. Oh it was so painful when we had no internet on Sunday...it was like the life support machine was off. Good part about that was the kids actually went outside for a change. She is still as disorganised as ever and still doesnt bring any homework home. Oh these lazy kids are a worry.
Stef.....currently we are doing a puberty thing at school. It has me more scared than ever. Her knowledge of personal hygiene is atrocious....I just cant wait for the messy time of the month to start..NOT. It downright scary for me. My girl is growing up, ....scary to think she will have the body of an adult soon, but the mind of a toddler. She has also been refusing to let anyone wipe her bottom which of course rules out school holiday program again. MUM HELP!! Yet again I will have to run to my dear old mum for help so that I can go to work. Not good. Hopefully I will be able to get some extra help from the carer respite centre so that she isnt working too hard.
Oh and we have booked a few days away in Broome for Melbourne Cup weekend. I just hope we can find someone to look after the kids for the 5 days. We both really need the break. 17 years and only 24 hour breaks away in that time. I need a holiday!