Ringing school today to cancel meeting

I am ringing the school today to cancel the meeting tomorrow. They are not going to be happy, but under advice by the rights advocate I am not to meet them on my own. I dont trust myself right now to go.....the school stacks the meetings with parents with 3 or 4 of them versus one parent, so parents generally cave in to what the school wants which is usually an easier life for them and detrimental to the child. I will not be railroaded into regressing my child just for their easy life. Its sad, since stef has been there full time for two years I have seen huge regression. She is losing so much...her ability to write, her ability to count and her ability to speak. It tears me apart, but I am now at a loss as to what to do about it. Do I pull her out and drive her to werribee everyday or is homeschooling an option. I just hate this school so much for what they are not doing for her. It seems all they are interested in is bowel issues and now I have proved it is only there pure laziness that is causing it. For two days now, I have got stef up at 5.30am, so she can have breakfast by 6, which gives me 10 minutes an hour after her breakfast to toilet her. She goes and is happy...All I ask of the school is to give her 10 or 15 minutes on the toilet at 9am when she gets off the bus. Instead, they insist on not spending that time, and instead take her 6 times during the day....if they did the job just once, they wouldnt need to take her 6 times....ridiculous stupid people...grrr. It causes stef undue stress, not to mention the amount of washing she brings home as they change every piece of clothing each time. I have not seen any piece of paper with Stefs name written on it by her.....nor any numbers. I get her to do it here but how can I do in half an hour what a school is supposed to do in 6. I just feel sick in the guts about this.....this is sad, and its so so wrong.

The big guns are loaded

Decided to get the big guns loaded. Here we have a Disability Rights Advocate, so I decided to call them in. They were horrified at what the school is suggesting about putting Stef in nappies and a one piece suit. When I told them the school was quoting occupational health and safety at me, they said, sorry, but human rights comes first and foremost legally. They were horrified that the school tried to ring Stef's doctor to talk to them about Stef as it abuses her right to medical privacy. And they were incredulous about the school demanding meetings with parents and then having 4 representatives for them against one parent. I will win this.. The school is just being lazy about how they are toileting ..not leaving stef on long enough to go, and not cleaning up properly is just causing all these issues. They want to make the job easy for them to the detriment of my girl and its just not happening that way......over my dead body. I get tired of having to fight so hard in all the stuff like this.....feeling exhausted but just have to keep on fighting for my kids no matter what.

Toileting issues and lazy schools

Im really pissed off right now....had a phone call from the assistant principal or was it the acting principal about Stef's toileting issues....demanding a meeting at their convenience...ha, not available. What I am really pissed about is that they want to put Stef in a nappy (after 6years without one) and want to put her in a one piece suit so that she cant put her hands in her pants when she is soiled. What I am angry about is at home she is essentially pretty clean..which means they are being lazy about her toileting..not leaving her on the toilet long enough, and certainly not wiping her properly. Basically they are wanting her to regress to make it easier for themselves.....well sorry, but its against human rights to put her in a one piece suit guys, and it happens over my dead body. Nor am I going to put her in nappies because you are understaffed and too lazy...f%$&^ You! This morning I have skipped gym so I can get stef bathed and breakfasted an hour early in the hope that I can time it so she will go before she leaves home. You see the whole problem is that stef goes about 1-1 1/2 hours after breakfast.....now that puts it normally at 9am when she gets to school..if they took the time to let her go properly then and wiped her properly their whole issue would go away....but no.....they complain instead about continuous soiling (wouldnt happen if they let her go) and touching ...derr, poo on the vag is irritating ...honestly...if they just did the job properly. If they dont have enough staff (two for 10 kids, 1 who is allowed to toilet then they shouldnt be downgrading the kids disabilities when they are applying for funding. Stef was funded at level 2 (brent was funded at level 3) ...way too low for what she is not capable of doing and so the school misses out on staff. She is now at level 4 because I fought it and got it reassessed...the extra funding has not gone into extra staff or help for stef, but straight into the school coffers... Ah the battles that we face all the time are ridiculous! The system is all about them.....not the kids or their education...

What makes a happy kid?

I was asked by someone yesterday what truly makes a kid happy? After a bit of consideration I came up with the following answer. Lots of love, lots of affection, support for the person who they are becoming and stability so that they know what is coming next but majorly to feel that they are important in their parents lives regardless of other circumstances. I live by those paramaters....they are probably not all there with my own mum, or at least not until later in life, but I feel that my own kids have all of these things and I hope and know that they all appreciate it in their own ways. Wednesday night, Melinda said, oh I need to dress up as a superhero for school on Friday....OMG, left to the last minute again...I went into supermum mode, hit the sewing machine and the shops, and came up with a really good costume. Lets just say that MJ feels the love, that she is important in my life and that if I can make something possible to make her happy I will. Its not about money, but its about making sure your kids know that you put them first at least sometimes. Today she is going off to school all dressed up, feeling as proud as punch of a great costume, but also knowing that mum loves her just so much. Makes me feel so good. She looks at other friends families and says they are missing something.....our home might not be the tidiest all the time, but its a warm and loving home, full of laughter, full of support and most of all full of love. I think Steve and I can be so proud of that.

Watch out world, Im feeling full of energy

I have been to gym this morning and I'm totally full of energy this morning. Looking forward to a new gym workout as this one is now too easy. I am getting a lot fitter can do the cardio work no problem now...and they have made that harder already. I still cant run, probably not ever as its just too hard on my knees, but I am walking on an incline at a pretty rapid pace. Definitely going in to buy the new CSIRO book..its a great balanced diet with heaps of protein for muscles. I found with Jenny Craig, that there was not enough protein to maintain my muscle mass. I found that at gym I just didnt have the strength that I do now or the amount of energy. Looking forward to new recipes! Work today...got a lot to do, but it makes the day fly by.. Ready set go, the day has begun and the morning rush is beginning.

Gym assessment and other stuff

I had a gym assessment, finally! I joined the gym back in July, but because I have been going spasmodically, we only just got around to doing a new assessment. Slack I know, but because I usually go in first thing in the morning, I tend not to get around to it. Anyway, I am about 1.2 kg heavier, but...and a big but is that my skinfolds and measurements are all down significantly. The gym instructor thinks that I have a significantly larger amount of lean muscle rather than fat. He is just doing me up a new workout....and he's leaving out the eliptical as it inflames my knee. I have a loose medial ligament and a torn cartilage. Eventually it will have to get fixed, but not until after Italy and after I get some more weight off. Today Brent finally finished an assignment that was due Tuesday last week. Have given him so many lectures about keeping up and if he can't he should go to the disability office. Hope he listens. 3 weeks until exams and he seems confident that he pretty much knows his stuff. He really is very well read, but he does know he needs to study up on sociology in particular. Melinda also has exams in 3 weeks...her first. I can see a little pressure coming in..she is a little snappier than usual, a bit more emotional. I hope she does ok as it will erode her self confidence if she doesnt. Stef is doing well, quite happy at the moment. School is driving me insane though with all the washing that comes home. Not sure what to do with her bowel issues right now..paed appointment in June. Jack is growing up....now a 12 year old...just hope he doesnt go through the caveman stage like Brent did....every word was ugh, and he didnt shower much. Anyway, caught up a little on washing...still 4 loads to do, but didnt do any today...I needed a rest up. Just felt eww, but maybe I was just suffering lack of sleep.

Feeling a little overwhelmed, but whats new about that?

Got up this morning and just felt totally overwhelmed by it all....sometimes it happens like that. Every where I look in the house there is something to do. I rely on having Saturdays free to catch up on washing and cleaning the kids rooms, but with Jack's party, I was otherwise occupied. Yesterday I was too tired after a very late night on Saturday night, so again, it wasnt done...If I dont have at least 10 probably closer to 15 loads I would go he. I was planning on going to work today, but I think I need to concentrate on this place today and then will be happier for the rest of the week having caught up. I noticed to that Stefs school pants are just not fitting her properly....too short, not long enough in the waist...it looks like she would be better in pants that I make...hmmm, just need to find time to make some for her....add it to the list. oK, on with the work....hopefully with no interuptions. I just want this place to be in order.

Amazing how a simple thing like not getting my mp3 player working really pisses me off. Anyone who knows me well, knows music is a link to my sanity. I love it and constantly much to my children's disgust sing in the car. I have it going at work, at home doing housework, at gym, in the car ....everywhere I go. I think one of the hardest things I faced when Stef was little was that she hated music with a passion and used to go into meltdown every time the radio was on. To live in silence for me was like hell. It took ages of ABA therapy for me to get to turn the radio on even and then it wasnt until I started getting her to play it on instruments, getting her to keep a beat and then getting her a keyboard, that her love of music has grown. Now she loves music.....all sorts. She has a radio in her room and she loves hard rock, classical, pop....whatever music she can find. Its now her main way to relax and overcome the stresses. It would be good if she liked headphones....but no. The beauty about having music as her way to calm down is that it is portable, its everywhere and you dont have to remember to bring it with you. Today is a huge day for me...lots of housework and then preparing for Jack's Birthday. Its hard to believe my beautiful baby boy is now almost 12...almost going off to high school. Where has that time gone? Its scary sending him off to high school....Im hoping he copes with the increased expectations. He is around 2 years behind his peers in some subjects, so its going to be a big ask for him to keep up. I guess I will just have to tutor him to get him through.

I really must get to queensland more

Yesterday I went to a funeral, it wasnt sad, Gordon had a long and happy life and it was his time to go. It was so lovely to catch up to my beautiful ex sister in law, my beautiful nieces and their little families. I miss Lyn. I look back at my youth, and she was a rock for me. I spent so much time at their home and spent so much time with my darling nieces. Being the youngest of 5 kids, by the time I came along, my parents were working a lot, and they didnt seem to have a lot of time or inclination to spend their time with me. Im not begrudging that, now I understand that they were my age now bringing up a 15 year old, having been through all that 10 years before. The generation gap seemed so much larger than it is with my kids....I guess I am just a younger person inside. My mum was seriously into bowling at my age..they spent so much time at the bowling club with all the oldies, so really at 46, my mum was doing stuff that 65 year olds were doing. Lyn was really my connection to a mother figure, but a so much younger one. In bringing up my kids I often thought of Lyn..making sure the babies had noise, never sleeping with them, making my own room a sanctuary for myself,Loving my kids always, but understanding that sometimes I dint like them as much, giving my kids the room to make their own minds up about right and wrong (with guidance of course). The one thing I did learn from Lyn is that it was so right to be an affectionate mother....that kids need cuddles and kisses. Its something that my mum and my grandmother before that lacked...the display of affection. Im so glad I broke that chain with my kids....hugs and kisses and I love yous were often. My kids never doubt my love for them...So many of the parenting skills I have now were learnt from Lyn. It was so nice to sit down on the floor and play with my beautiful great nieces and nephews. I loved getting to know their little personalities, all very different from each other. I remember yesterday lyn walking in and looking at me playing with the babies on the floor, and saying, Janine's creche...and thats where she expected me to be..she knows me well. I still miss the girls heaps...they were a big part of my life. I wish I lived closer so I could be the crazy aunt for their kids. A special aunt that loves them all so much. I often wish that my kids had that sort of aunt.....Steph especially, an aunt that knows her and loves her just the way she is...if wishes were fishes hey. Well, on with my day....slept in this morning, so no gym until this afternoon. Work today, and gym.....steve is away again, so sole parenting again...not that its a huge thing any more, the kids are so used to it now.

Wednesday Ive got Friday on my mind

A crazy busy day ahead, but I hit the floor running. This is the third day in my challenge to lose 15kg before I hit Italy. I hit the gym at 5.30am until 6am and will go back sometime today for another session of 30 minutes or so. Just getting kids organised for school, off to work, then a funeral, back to gym, tea and bed...... I can feel the weight falling off and my energy levels are very high especially during the day. Stef had the first meltdown in ages yesterday..I really have got used to her not having them. It was understandable though...she is coming down with a cold, was stuck on a bus for 2 hours with heaps of noise due to an accident on the road holding up traffic..basically things were not her way. I tried to get her to calm down, but eventually,she threw Melinda and I out of her room, curled up under the doona and chilled for an hour...this is after screaming for 30 minutes and throwing herself around. Brent is having a day off uni today...4 assignments due in this week, and he has one left to do. I think he has learnt a huge lesson about getting assignments done early and not leaving them until the week they are due...its good that he has learnt this early. The constant all nighters took their toll yesterday when he fell asleep in a lecture. Jack is full of angst today too....lots of panic attack and anxiety. I think the whole birthday week stuff makes him worse....its the whole anticipation bit. Ok, on with the day, shower, make lunch, and get moving for a day of work. Then a funeral for Gordon Murrell....my ex sister in laws father. It will be good to catch up to my nieces from the Gold Coast, just wish it was in better circumstances.. Ciao Bella

Promoted a little more understanding yesterday

Yesterday I met with Ian Trezise. I think he is getting the whole autism bit a little more. I took samples of Jack's handwriting and his reports. I asked him, if Jack were his son, would he want him going to high school without support..and he said no, it would horrify him. The one thing that impressed him a lot was the fact that I am so cool calm collected and how positive and full of energy I am. He was also amazed at Brent's story and how positive the outcome has been. I think that although I told some pretty harrowing stories of bullying, of failings in the school system, of lack of empathy by the education department, and the long term cost of not helping these kids, I wasnt emotional, I was clear, articulate and educated him. He thinks I should make appointments with every Victorian politician I can and that he understood so much more what we go through and that would be beneficial to all. He says he sees many families that come in and cry about their situation...but he saw me as a fighter, not just for my own, but for every kid and in every circumstance with different solutions for them all. An autism school would work for some, but not all, more support in secondary schools works for some but not all....we need a system that recognises needs....not only for our kids, but for normal kids and the teachers and for society as a whole, after all, its society that will pay the price of failing these kids. Oh and he was so unaware of the changing in criteria and will bring it up in parliament next week!! Onward with educating these politicians....next....

Monday morning

I really love Mondays I have decided. I love how its a new start to a new week....I always feel as if its a new page to be written on, a new set of challenges and a new set of goals. I lost NO weight last week due to my disasterous weekend of non stop eating and the fact that I ran out of time for gym workouts...hmmm. I really need to be far more disciplined! I didnt design the dress that I wanted to either. This week, I am more determined....eating properly, meal replacement shakes for lunch, and gym at least once a day. 2.5kg is my goal for this week. Today I have a meeting with a pollie..trying to get these guys to understand what the problems are with funding, and what cost to society in the long run when they fail these kids. This week I am definitely going to design and make one my dresses to take to Italy.. Oh Steve has booked his flights to France. Exciting! I am so looking forward to my trip away now!

Thinking outside the box

I had a pretty restless night last night...lay in bed for about 2 hours wide awake and ended up just getting up. So much crap is going around in my head about this funding stuff. Anyway, I decided to start thinking outside the square on this. Crying to politicians isn't working, so many families visit their local member and get no where why? There is nothing in their bleats that refers to other kids, nothing that refers to health and occupational safety of teachers, nothing about how the schools are funding disabilities out of general funds and so all kids are dipping out. Its time to look at it all from a different angle....time to look at how we can sell a solution and be more creative with what can be done. Its time to put a human face to our kids rather than just numbers on pages. Its time to get the teachers union to help us, its time to sell it to every other parent of every other kid in our classrooms. Ok, so how. My marketing expertise (LOL, 2 units at university) tells me that it needs to be positive, it needs to be personal, it needs to have solutions to the problem, it needs to show not only our kids difficulties, but the teachers and the other children. It needs to put faces to the numbers...but most of all, it needs to be positive so that the politicians continue to watch. I think I might try to get teachers to write me letters telling me of their frustrations, anonymously if they like, maybe talk to schools about how they can cope financially with the extra burden without any increase to budgets, its time to make this a bigger campaign. This isnt about fighting for Jack any more....we will somehow get Jack through in one piece. We have a loving supportive home, parents who will obviously help him on his way and parents with experience in all this as we have been there before. He is lucky. Today I am having a meeting between primary school and the high school to develop a plan to integrate him into high school, to reduce the amount of stress he faces. Its better to be proactive.

Disability funding in Victorian schools SUCKS

Mr Baileu is a disgusting individual and his government one of the most uncaring pack of bastards that I have ever seen in my years. Autism is a huge problem in our society...the numbers of these kids coming through is huge, and I understand that the education system is struggling to cope with that. As an accountant, yes, I do understand all that, but I do see the other side and it sucks big time. I know that criteria has always been tight to get funding for autism in our schools. We struggled with Brent as by the time he hit primary school, his speech had got above the cut off point for funding under autism criteria. He was still very autistic and the teachers struggled to cope with his behaviours. He spent around 80% of his time in the principal's office doing his work as his teachers could not cope with him (thanks Mr Candy!). At grade 2 level, I stood outside his classroom for an hour...in that time, I heard the teacher yell his name at least 40 times, I even heard her say to him, "are you mental" "are you retarded" ...Lets just say that incensed me to get funding for him at any cost. I went into battle, and finally in grade 3 3rd term, we got it under the Severe Behaviour criteria. He got it again when reassessed at grade 6 after having several major fights in the playground and breaking a couple of windows....go Brent...did yourself huge favours in doing that as now you had an aide all through High school. With help, and lots of understanding, help and perseverence at home, he made it through secondary school and got into Uni where he is excelling at a level that we would never have dreamed of for our Moderate/Severe autistic boy. Under todays tightened criteria, we would not have got funding at all for any help and he probably would have been expelled for behaviour reasons, as because he has an autism diagnosis, he could not apply under severe behaviour criteria. Jack hasnt even been allowed to apply for funding...he just doesnt fit the criteria for autism now his speech has improved. It doesnt mean he is any less autistic than he always was. He still has uneven learning, behind his peers by at least 2 years on testing in some areas, writes like a prep grader, shows extreme frustration, has little concentration span, has social difficulties and due to lack of executive function cannot organise himself at all. How on earth is he going to cope with high school with zero support. He isnt the worst case of this by a long shot...kids who previously have been eligible for special school due to low iq, who test at 71 at grade 6, and who have speech at a 71 mark, will be sent to mainstream schools with no aides or supports, regardless of behavioural issues! This is a generation of autistic children destined for failure by a system and a government that just doesnt care. These are the dole recipients of the future, untrained, pushed through school regardless of ability, thats if we can keep them at school, bullied and no one cares. I worked out that for every child who gets through the system without having got lifeskills or training for work will be on welfare forever..at 3%cpi on current Newstart payments, that will cost $3.9 million over the course of their life..surely its better to spend a little to help them get trained. The Victorian state government fail....where is the right to education here......there is none.

Things are looking up

After having some bad news from Carer Respite, saying that we couldnt get any residential care for Stef so steve could meet me in france, I decided to think outside the square. I have a few friends who could use some extra money, so why not ask if they would be interested. At this stage, I have a beautiful lady who has given a tentative yes! OMG, I am so excited that Steve and I will have a week together in France! I am also very happy that the NDIS is being rolled out! With the NDIS, there will be a fairer distribution of services with a bit of luck. For so long we have done it all on our own with no supports. It has been difficult at times and it saddens me that so many just dont get the help they need while others seem to get it all. It isnt even dependent on how disabled the person is, or how well they cope, just who they happened to have as case managers..that just sucks. We couldnt even get a weekend of respite care for stef for a whole year...OK, getting Stef back on DHS waiting list. Yesterday I started cleaning out MJs room...so many of her clothes just dont fit any more....we really need to gradually replace stuff, especially casual clothes and shoes. Looking forward to work today...its nice to step away and think about other stuff for a while....it really is a sanity break.

Monday!!! A new week, a new page

Just waiting for my gym gear to be dry and Im off and running. Determined now to lose the 15 kg before I go away. Nothing naughty will pass my lips today! Well, back from gym feeling absolutely f%&*^&d! Good news is though, I only missed 10 minutes on the bike today. Only have time for a 50 minute workout in the mornings before I am due home to deal with the kids. Because my pecs were sore from yesterday, I did my weights again today... 15 kg to lose by italy!! On the agenda today is to complete the washing, wash the laundry wall, the usual kitchen stuff, clean the family room, melindas room, ensuite and dining room, design my dress and replenish the chook house food and water. If I get time I will also dig the vegetable garden and plant up a bulb pot. Just gave Jack a challenge....he must say his time table in under 30 seconds.....for each one he can do, he will get $10. Bribery and corruption works every time!! Today I will also plan out 3 goals of self care for Stef to work on consistently at home and 3 goals educationally. We need to help her learn!! M

Planning out the week

Plans for my week!! OK from now on on a Sunday I am going to state what I plan for the week, my individual goals. I think it helps me keep focussed on what I really want and want to achieve. It also helps me be accountable to myself and others and it makes me more determined to succeed. Ok so my plans for the week........ 1. To design and make the black dress. 2. To clean the chook house, replenish the food and water, and to get the floor composting going. 3. To dig over the vegetable garden, putting in the cow shit. 4. to clean the house totally 4a. and to get the laundry decluttered and spring cleaned including the ceiling and walls. 5. To catch up to the washing totally and the ironing. 6. To get to the gym every day. 7. To plan our meals so that Steve and I can keep on track with our dietting. 8. To lose 1.5kg this week. 9. To draw up a list of goals for Stef to achieve and to work with her everyday to achieve them. 10. To spend time with Steve to nurture his soul and to make sure we are on the same page. Plan for my day. 1. To clean the bathrooms, the lounge, the family room and the dining room. To clean the laundry walls and dust off the boxes of fabric. 2. To design and make the pattern for the black dress. 3. Clean out the chook house and put in the food and water. 4. Plant up one pot of bulbs. 5. Dig over the vegetable garden. 6. Get to the gym for a workout.

Ah Saturday

Ah Saturday, a day of trying to catch up around this place.....got sweet buggerall done yesterday. Spent the day looking at funding criteria for education and came up with zero ways to get around the system for Jack. Met with the school psychologist too...she doesnt see a way either. The criteria has been tightened a lot. Where Brent got his funding by belting a few kids and accidentally breaking a window, that is not available to Jack. It seems that if you have autism you cannot have severe behavioural problems. This means going down the self harm route is out to us. Its scary that our little man who can barely write at Prep level will be going off to high school, knowing that he is already at least two years behind his peers in work level and yet he is pushed on through. Its setting him up to be a failure for his whole life. I am sure somehow we will find a place for him, but he needs to get through at least year 10 to get an apprenticeship, and Im not sure that is what he wants to do anyway. In a perfect world he would get help in the classroom. He isnt an idiot, far from it. There is quite a smart mind in there but he hasnt got the tools at this stage to get it on paper or the executive skills to organise himself. Its sad. I will keep on fighting for him, all the way to the top, even if I have to write a gazillion letters andx meet every bloody politician, its wrong not to help kids ..... Well, housework awaits....always shit to do around this place and not being an organised person, it frustrates me to no end. Other good news is that I have not lost my keys once this week!! Last week I cleared off a space in our room specifically for my handbag keys and phone,...Its working. I even have got into the habit of putting my stuff there before i do anything else!!

Just looking around the house.....feeling a bit overwhelmed as I never seem to catch up. We really need to get some help around the house, but right now, I want more money in my pocket to enjoy my holiday to Italy. Hehe, I would much rather have a messy house but have the extra $500 in my pocket over there. Is it wrong for me to think this selfishly....lol, I dont think so..... I have so many great ideas for what to do around the house. We really need to redo the front garden..get rid of all the plants that I am allergic to, but also I would prefer a cottage style garden rather than just green plants...bit by bit it will get done. I also would like to get the window in the lounge replaced with a sliding door, and then converting the side of the house to a outdoor entertaining area. I want to render the garage wall next door, and mosaic it in a forest theme......I know, its the creative brain working overtime. It would just be so nice to both have a lovely view out of the lounge window, but also an area that we can utilize more. It seems like a huge waste of space at the moment. Nobody ever goes down the side and its 3.5 metres by the length of the house. I think I need another part time job so I can save up for this stuff. This morning I had a huge deja vu feeling. One of the kids on the bus was fighting his mum, pulling away, trying to run because he didnt want to go to school. I had huge memories of the times when Brent did exactly the same thing. I went to help her out, picked him up off the ground and together we got him onto the bus. She has to win this battle or every time he feels like not going to school he will chuck a meltdown and get out of it. She really needs the physical brute force to be able to get him there. She is only a slightly built person and quite simply doesnt have the strength to tangle with an 11 year old boy who just will do anything rather than what he is told. I dont mind helping her...I know what its like when everyone just stands and stares when you are struggling with a screaming kicking child. I remember so well the times, but we got through somehow. We had to win the war, and that meant winning battles every single day no matter how we felt ourselves. My heart goes out to all those mums out there who are going through this.

Ndis

I took the kids up to the NDIS rally yesterday. It was great to see the number of disabled people who had come out in droves to fight to see the rights of disabled people honored. I think Stef really got it that we were there for her. She was such a great kid all day, even though she had a sore foot. She really was jumping around with all the chanting...although she couldnt speak, her voice was heard just being there. She was getting right into holding up her banner proudly. I really think that she got it!!! Our only hope now is that the NDIS is brought in, no matter which party is in power and isnt delayed in any way by politics and state of the economy. Its sad that if you have a car accident, you get all the therapy they can throw at you.....but if you are born with disability, you get little.

My only hope with the NDIS is that it isnt skewed towards physical disability as these things often are. Mentally disabled people are considered more able some how. How can this be so? Stef is just as disabled as a person in a wheelchair in many ways. She has no method of communication at this stage, is not capable of any personal hygiene tasks...and yet she is able to get into anything and runs amok. The respite care house says they need to put on extra staff when she is there because she is so busy....so in some ways she needs more care as they have staff for those in wheelchairs...they are easy to look after because they are basically stuck in the one place. Today I must organise the respite care we need for Steve to come to France with me. Lyn has offered to look after the kids for a bit, at least when she isnt in Bali, so I really need to organise around her. About 6 days I need....the other kids can look after themselves pretty much. I so hope I can arrange it.....I think its so good for steve and I to have time together and shared travelling and memories together.