I had a shocking week....went into a real downward spiral about long term prospects. It really is quite scary this whole carer's bit.
It started with someone saying they didnt want the responsibility of looking after Stef while we were away. And it ended with me thinking OMG in 5 years time I will have not only the full time carers role of Stef, but maybe my inlaws as well.
Anyway, the upshot is, I have reached out to different organisations to help us, including residential respite care. Hopefully that will come about for this holiday, but also for future times. I have always shied away from residential care...have heard some major horror stories, but hey, I can't do this forever and I will always need breaks from the caring role at times. I realise too, that if it were one of my family who had a special needs child or adult, that I would be offering to help along the way, even so the family could have a meal or something. I wouldnt be sitting back in my selfish little world.
On Saturday night, we were on our way out, a car immediately in front of us crashed into the car in front of him, and then took off. We of course pulled over and helped the young kids in the car hit. I just couldnt believe the lack of care or the selfishness of the person who hit them. I also realised that there was no way I couldnt stop to make sure the kids were ok. They were shaken up, and the car was a bit of a mess but drivable for now, but I'm glad we stopped, even if it did make us really late.
Stef had a great time at the kids' disco. Loved the music the dancing and the lights. It was lovely to watch her smile on the dance floor having such a good time. Thanks to Sharon from the Autism treehouse for organising this. It comes as a bit of a shock to me, but Stef really is one of the most autistic kids in Geelong. I guess I just dont want to see her disability, but see the beautiful girl underneath it. I know I always try hard to focus on what she can do, not what she can't, so it comes as a bit of a shock when you realise just how much her autism affects her. I am proud of the fact that we are able to take her out and about....that we can do things as a family. A lot of people can't or won't. Thats why autism is just such a hidden away disability. We certainly get a lot of people who just stare...thats their problem not ours.
Anyway, I'm out of the spiral now...on with the job, and looking at ways to get around things rather than seeing the blocks sitting in our way. I can't wait to see the world!!
Monday, April 18, 2011
Friday, April 8, 2011
Parent Teacher Interviews......FRUSTRATION
Had Brent's Parent/Teacher interviews last night....PURE FRUSTRATION.
Frustration from all the teachers. All of them said....Brent is capable of being an A+ student..academically brilliant mind, but he just isnt doing enough work. His disorganisation is letting him down big time and he is just purely LAZY. I had one teacher who was almost in tears as she can see this beautifully talented mind, but can see him stuffing it all up. His legal teacher was so angry with him he could barely talk to us. Bloody kid!!
How can I get through to this kid..it's only 20 more weeks.he needs to put in big time..show them what he is truly capable of. Not only that, that he truly won't be happy doing menial work for the rest of his life and that Uni will be so great for him. Great because he will find people of like mind, will find friends that truly understand him as a person, stimulates his mind and puts him in a path for success at whatever he choses to do.
I have so much work to do with him over the holidays....time to get him totally organised..set up a better study environment in the house where I can see that he is working and not just mucking around on the internet in his room. I need to make sure I see his SAC work, before he hands it in and I need to make sure that I know when all the SACS are due so I can keep him on track for success.
Sometimes I feel that he is still a toddler and Im having to spoon feed him.
Tomorrow is Kieran's funeral..I just can't go.....its all a bit close to home for me. I've turned my grief into the will to fight for the GPS systems...its what I can do, to prevent this happening again.
Anyway, its the last day of term for these darlings. MJ and Brent are going to have to look after the others on the days that I work during school holidays, but apart from that..no plans at this stage.
Frustration from all the teachers. All of them said....Brent is capable of being an A+ student..academically brilliant mind, but he just isnt doing enough work. His disorganisation is letting him down big time and he is just purely LAZY. I had one teacher who was almost in tears as she can see this beautifully talented mind, but can see him stuffing it all up. His legal teacher was so angry with him he could barely talk to us. Bloody kid!!
How can I get through to this kid..it's only 20 more weeks.he needs to put in big time..show them what he is truly capable of. Not only that, that he truly won't be happy doing menial work for the rest of his life and that Uni will be so great for him. Great because he will find people of like mind, will find friends that truly understand him as a person, stimulates his mind and puts him in a path for success at whatever he choses to do.
I have so much work to do with him over the holidays....time to get him totally organised..set up a better study environment in the house where I can see that he is working and not just mucking around on the internet in his room. I need to make sure I see his SAC work, before he hands it in and I need to make sure that I know when all the SACS are due so I can keep him on track for success.
Sometimes I feel that he is still a toddler and Im having to spoon feed him.
Tomorrow is Kieran's funeral..I just can't go.....its all a bit close to home for me. I've turned my grief into the will to fight for the GPS systems...its what I can do, to prevent this happening again.
Anyway, its the last day of term for these darlings. MJ and Brent are going to have to look after the others on the days that I work during school holidays, but apart from that..no plans at this stage.
Thursday, April 7, 2011
Woohoo, I found my mp3 player
I'm rapt, I found my MP3 player! I thought it was lost forever but instead, I had left it in my old handbag! I love my music, and my mp3 player has 500 of my most favourite songs. It ranges from mellow...the eagles, fleetwood mac to up...billy idol to songs with great memories like Jimmy barnes and chisel to Red hot Chilli Peppers, Kings of Leon, Pink and even some new bands from Melbourne. Music puts me in a great mental state.
Up again early this morning...4.45am, not good considering I went to sleep at 12.15am. Can blame Stevo for that one heheh.
Had takeaway from a Thai restaurant in Lara...excellent meal and very good value. Two courses and enough to feed 3 of us easily and leftovers. We don't do that often, but Steve got word of his bonus being paid next week, and it was a good one! Celebration time.
Anyway, time to get Stef up and organised, and hang out my third load of washing for the day...always stuff to do!
Up again early this morning...4.45am, not good considering I went to sleep at 12.15am. Can blame Stevo for that one heheh.
Had takeaway from a Thai restaurant in Lara...excellent meal and very good value. Two courses and enough to feed 3 of us easily and leftovers. We don't do that often, but Steve got word of his bonus being paid next week, and it was a good one! Celebration time.
Anyway, time to get Stef up and organised, and hang out my third load of washing for the day...always stuff to do!
Wednesday, April 6, 2011
Ah Spa
Woke up very early this morning...like 3.30am. Just lay there for a while, but couldnt get back to sleep so I got up.
Its not so bad, have done lots this morning. LOL, chocolate muffins and hedgehog made by 5am...the wall unit and computer desk decluttered by 5.30, and then a lovely spa.
Have changed the routine in this house a bit again. I used to wake up Melinda first, but yesterday because Stef was awake at 6.30, I put her in the bath first. IT WAS GREAT! Stef was so much more relaxed, had the time to get dressed herself, helped me make her breakfast and actually ate it. So, from now on, its Stef up first!
Had photos taken for newspaper yesterday. I just so want this GPS stuff to go ahead.
I know my blog yesterday seemed a bit like a complaint fest. Its not what I wanted it to be, but I really need for people to understand that although we look as if we are doing so well, underneath the water, we are always paddling so hard just to keep a float.
On friday, I heard this stupid ignorant woman say in a lift what a poor parent the mother of Kieran must have been. I was so angry at this. Sometimes being a parent of an autistic child is just so damned difficult and those people who have only ever had normal children would never ever understand the shit we go through. I honestly almost slapped her, but took the high ground, called her ignorant and walked away...
Oh and a mate is fixing my laptop for me...he really is a darling. I offered to pay, but he says no because I offered to lend him it when he needed a computer...I guess thats what mates are for.
I realised too, that I do care very deeply for people. Not just those I know, but also those I dont. I realise, I would never walk past a crying child, or a fallen elderly person...its just not in my nature. They say that all those people who say they saw Kieran are lying, just to get their name in the paper. I don't know whats worse......driving past a lost child, or lying in the aftermath. Stupid selfish twits.
Anyway, its the pointy end of the day.....time to get the kids organised!!
Its not so bad, have done lots this morning. LOL, chocolate muffins and hedgehog made by 5am...the wall unit and computer desk decluttered by 5.30, and then a lovely spa.
Have changed the routine in this house a bit again. I used to wake up Melinda first, but yesterday because Stef was awake at 6.30, I put her in the bath first. IT WAS GREAT! Stef was so much more relaxed, had the time to get dressed herself, helped me make her breakfast and actually ate it. So, from now on, its Stef up first!
Had photos taken for newspaper yesterday. I just so want this GPS stuff to go ahead.
I know my blog yesterday seemed a bit like a complaint fest. Its not what I wanted it to be, but I really need for people to understand that although we look as if we are doing so well, underneath the water, we are always paddling so hard just to keep a float.
On friday, I heard this stupid ignorant woman say in a lift what a poor parent the mother of Kieran must have been. I was so angry at this. Sometimes being a parent of an autistic child is just so damned difficult and those people who have only ever had normal children would never ever understand the shit we go through. I honestly almost slapped her, but took the high ground, called her ignorant and walked away...
Oh and a mate is fixing my laptop for me...he really is a darling. I offered to pay, but he says no because I offered to lend him it when he needed a computer...I guess thats what mates are for.
I realised too, that I do care very deeply for people. Not just those I know, but also those I dont. I realise, I would never walk past a crying child, or a fallen elderly person...its just not in my nature. They say that all those people who say they saw Kieran are lying, just to get their name in the paper. I don't know whats worse......driving past a lost child, or lying in the aftermath. Stupid selfish twits.
Anyway, its the pointy end of the day.....time to get the kids organised!!
Tuesday, April 5, 2011
How much do other people really get what we go through???
It was the other night, after having a major argument with my oldest brother, that I realised that so few people really GET what we go through and have endured on our travels with autism. Or why the fight for this GPS system for absconderers is just so important to me.
How many people would know just what it is like to have a child missing...let alone one which can't even say her own name. For those who havent been there, its like losing a much loved dog only about 10000 times worse. The feeling of total panic. fear of finding them dead, fear of some unscrupulous person picking them up. Its the worst possible feeling. When Stef went on one of her major wanders and turned up safe and well, I threw up for about an hour, had the shakes and just felt so awful. I think it was the overload of adrenaline.
Some family members just don't get, that a family bbq in a park is just too hard for us. Yes, Stef and I go out and about, we go to the markets and to parks, shopping, even to the show, but throw in trying to keep her safe and having conversations, now thats something I just can't do. I cannot afford to be distracted one little bit when we are out, especially near water. She slips away with the stealth of a ninja. One of us always has to be 100 per cent on guard duty. I would never trust anyone but us to take her out and about...our radars have been on for so long, it almost becomes second nature to keep an eye out for her at all times. No one ever gets a 100percent conversation unless we are at home and we know its safe.
People also don't realise that I on lots of occasions am extremely sleep deprived. I crash out at 9pm...sometimes its because I get up so early, but at others, its because Stef has woken up for parties at 1, 2 or 3am...running through the house turning on every light and the tv. I find I have to get up, just to keep her a little quiet so that the rest of the household can sleep. Steve drives a long way to work, and I worry that if his sleep is disrupted too much, he will fall asleep at the wheel. Sleep disturbance is a huge part of autism. Even Brent finds sleeping difficult and is often still up at 1am. I often hear him through the bedroom wall, tossing and turning.
Oh and then there is the additional housework around this place. Stef has no concept of personal hygiene or helping to keep the house clean..come to that none of the kids really get the whole keeping the house clean. Stef finds eating at the table with everyone else just too loud, and a little stressful. She grabs her food most of the time and runs off with it...leaving the scraps anywhere. A packet of chips means chips all over the furniture, the floor, everywhere. Then there is the raiding of the cupboard.....finding chocolate chips everywhere, flour, rice, and whatever else she can get her hands on. I frequently shampoo carpet..at least every 6 weeks, and the couches. I vacuum nearly every second day and wash floors two or three times a week. The amount of washing is huge. Stef has bowel issues which means she leaks constantly......nothing in this place to have to change her completely 3 times a day. Oh and then there is the playing in the pooh.....eww. I probably do 3-4 times more housework than the average woman with two kids. Stef gets into so much stuff!
There is the extra help needed for homework, and to help stef with getting life skills. Its never ending.
Why am I telling you all this....to give you some understanding of the true bits of what autism means for some of us. To help you understand how such tragedies like Kieran's death can occur and why we need every bit of help along the way that we can get and that we simply don't get near the help that we need from the support services.
How many people would know just what it is like to have a child missing...let alone one which can't even say her own name. For those who havent been there, its like losing a much loved dog only about 10000 times worse. The feeling of total panic. fear of finding them dead, fear of some unscrupulous person picking them up. Its the worst possible feeling. When Stef went on one of her major wanders and turned up safe and well, I threw up for about an hour, had the shakes and just felt so awful. I think it was the overload of adrenaline.
Some family members just don't get, that a family bbq in a park is just too hard for us. Yes, Stef and I go out and about, we go to the markets and to parks, shopping, even to the show, but throw in trying to keep her safe and having conversations, now thats something I just can't do. I cannot afford to be distracted one little bit when we are out, especially near water. She slips away with the stealth of a ninja. One of us always has to be 100 per cent on guard duty. I would never trust anyone but us to take her out and about...our radars have been on for so long, it almost becomes second nature to keep an eye out for her at all times. No one ever gets a 100percent conversation unless we are at home and we know its safe.
People also don't realise that I on lots of occasions am extremely sleep deprived. I crash out at 9pm...sometimes its because I get up so early, but at others, its because Stef has woken up for parties at 1, 2 or 3am...running through the house turning on every light and the tv. I find I have to get up, just to keep her a little quiet so that the rest of the household can sleep. Steve drives a long way to work, and I worry that if his sleep is disrupted too much, he will fall asleep at the wheel. Sleep disturbance is a huge part of autism. Even Brent finds sleeping difficult and is often still up at 1am. I often hear him through the bedroom wall, tossing and turning.
Oh and then there is the additional housework around this place. Stef has no concept of personal hygiene or helping to keep the house clean..come to that none of the kids really get the whole keeping the house clean. Stef finds eating at the table with everyone else just too loud, and a little stressful. She grabs her food most of the time and runs off with it...leaving the scraps anywhere. A packet of chips means chips all over the furniture, the floor, everywhere. Then there is the raiding of the cupboard.....finding chocolate chips everywhere, flour, rice, and whatever else she can get her hands on. I frequently shampoo carpet..at least every 6 weeks, and the couches. I vacuum nearly every second day and wash floors two or three times a week. The amount of washing is huge. Stef has bowel issues which means she leaks constantly......nothing in this place to have to change her completely 3 times a day. Oh and then there is the playing in the pooh.....eww. I probably do 3-4 times more housework than the average woman with two kids. Stef gets into so much stuff!
There is the extra help needed for homework, and to help stef with getting life skills. Its never ending.
Why am I telling you all this....to give you some understanding of the true bits of what autism means for some of us. To help you understand how such tragedies like Kieran's death can occur and why we need every bit of help along the way that we can get and that we simply don't get near the help that we need from the support services.
Monday, April 4, 2011
Turning Negatives to positves!
This week has been a tough one. Last Tuesday night, a beautiful little boy with autism, wandered from his home in a nappy....along a busy highway where he was almost hit by cars and trucks, and then onto a railway track where he was hit by a train. It made me feel so icky......so angry that no-one stopped to help him...angry that we still havent got a gps system or emergency data base, ..and just devastated for this beautiful family who has such ignorant people saying things like, where was the mother, what bad parents they are..etc. I had such anger and hatred in my head....Anger is such a negative emotion. It doesnt do anything but eat you up inside. After a good sit down and think, I thought, I can use that energy to do something different and that is to use that energy to fight for what is truly right.
Anyway, Im now on a crusade..a crusade to stop this ever happening again. The technology is out there....we just need to make people see that there is a need to get it readily available to families.
Striking while the iron is hot.......been on the news, and now to keep on putting pressure on politicians, and in the media to get gps systems for these families, and those for other people with disabilities such as alzheimers..so that we never have another tragedy like this happening again.
I have such vivid memories of times that Stef has escaped from home...how panicked and fearful I felt, wandering around the streets calling her name. I will never forget. And the time that someone knocked on my door and said, oh, stef is up on rennie street....having left my beautiful girl in a risky situation rather than get involved. Or the time finding Stef jumping up and down in a river because she couldnt touch the bottom. There but for the grace of good fortune tragedy was avoided.
Anyways, busy today, between getting in touch with media, and cleaning up the dross from the weekend, catching up on washing and stuff.
Oh and we went to the autism awareness day in St Kilda. Stef was priceless....was so excited to see two thousand balloons flying up, I thought she was going to take off she was flapping so hard...oh and the smile on her face was just beautiful.
Had a big fight with my oldest brother on Friday night. He isnt happy about mum looking after the kids while we are away. He just wouldnt listen about what extra support we are looking at having in place for her. I ended up hanging up on him as he has no idea what we have gone through as a family for our kids, or how important it is for me to take time out when we can. He is purely selfish.....not once in 17 years has he ever offered to babysit for us...not even for 5 minutes have I ever left Stef in his care...and yet he thinks he knows it all. He has no fricking idea. Anyway, he then rang my mum and tried to lay the law down to her ...that she shouldnt be doing it, and that she is too old to be responsible, and that she wasnt well enough. Mum is going through a bit of a flat spot.......understandable as she has lost 2 good friends in the last 6 months. It happens like that when you are nearly 80, your friends are dying off. What is important is to stay involved with life, seek out companionship and be with people and thats just what mum is doing. Mum rang me later and said that she is quite ok to look after the kids, and that everything is ok to book the trip. I really wish he would mind his own business and stop trying to control other people.
Anyway, on with the day.....lots to do!!
Anyway, Im now on a crusade..a crusade to stop this ever happening again. The technology is out there....we just need to make people see that there is a need to get it readily available to families.
Striking while the iron is hot.......been on the news, and now to keep on putting pressure on politicians, and in the media to get gps systems for these families, and those for other people with disabilities such as alzheimers..so that we never have another tragedy like this happening again.
I have such vivid memories of times that Stef has escaped from home...how panicked and fearful I felt, wandering around the streets calling her name. I will never forget. And the time that someone knocked on my door and said, oh, stef is up on rennie street....having left my beautiful girl in a risky situation rather than get involved. Or the time finding Stef jumping up and down in a river because she couldnt touch the bottom. There but for the grace of good fortune tragedy was avoided.
Anyways, busy today, between getting in touch with media, and cleaning up the dross from the weekend, catching up on washing and stuff.
Oh and we went to the autism awareness day in St Kilda. Stef was priceless....was so excited to see two thousand balloons flying up, I thought she was going to take off she was flapping so hard...oh and the smile on her face was just beautiful.
Had a big fight with my oldest brother on Friday night. He isnt happy about mum looking after the kids while we are away. He just wouldnt listen about what extra support we are looking at having in place for her. I ended up hanging up on him as he has no idea what we have gone through as a family for our kids, or how important it is for me to take time out when we can. He is purely selfish.....not once in 17 years has he ever offered to babysit for us...not even for 5 minutes have I ever left Stef in his care...and yet he thinks he knows it all. He has no fricking idea. Anyway, he then rang my mum and tried to lay the law down to her ...that she shouldnt be doing it, and that she is too old to be responsible, and that she wasnt well enough. Mum is going through a bit of a flat spot.......understandable as she has lost 2 good friends in the last 6 months. It happens like that when you are nearly 80, your friends are dying off. What is important is to stay involved with life, seek out companionship and be with people and thats just what mum is doing. Mum rang me later and said that she is quite ok to look after the kids, and that everything is ok to book the trip. I really wish he would mind his own business and stop trying to control other people.
Anyway, on with the day.....lots to do!!
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