Well its official. I am back to square one..... Yesterday Callum sat the test to see if he could go to a Special Education school and he's too smart to go. When I spoke to his teacher the other day she basically outlined to me that he gets babysat at school. Also talked to another teacher in the SEC and she told me that if he regresses after the school holidays he will go back to going an hour a day. What is the point? I think I am about to make one of the hardest decisions in my life..... Homeschooling.
Yesterday before he did this test he was having a massive meltdown and was crying. I was the only one that could calm him down. He did the test for about 10 minutes before he started losing interest and concentration. I don't know what to do. I am back to the beginning. I am starting to feel that since he is home most of the time anyway then I might as well school him from here. I am frustrated and angry. I don't want my son to end up being another kid that slips through the system. He will if something isn't done now. It feels like he has been put in the too hard basket. I knew my week with Pat going back to work was going to be hard but I forgot how much more exhausting it was going to be. So we are in the middle. Not coping at a mainstream school and too smart to go to a special school. Why can there not be any "inbetween" schools? 1 out of 110 children are diagnosed with different levels of Autism. So of a school of lets say 900 kids thats at least 8. Why are there kids slipping through?
I just want my angel to be happy and get an education. I want to be able to stress less but I can see that it isnt going to happen any time soon. If only life was a tad easier for both of us......
Now to go and pick him up from school because it is coming up to 11.30.
Wednesday, March 28, 2012
Monday, March 19, 2012
For Gods sake someone wave that magic wand!
It is official.... I hate my phone..... That gorgeous little Panasonic instrument that helps me to communicate.... I hate it. Sick of constantly being on it chasing things that aren't going to get anywhere any faster. Sick of trying to find services that I am finding out very quickly are extremely expensive. The system is failing all of us and it isn't fair. Yes this is going to be a bit of a rant so if you think you might be offended then stop reading now.
I know I am not alone. After watching the article on A Current Affair last night with the Autism Forum I very much realised that I am not alone. It's not fair. I have a gorgeous little 6 year old boy that is a huge part of my world and he is suffering. So many times I feel like I have failed him and it makes me feel like absolute crap. He is 6. He is just a little boy. Due to his school lacking knowledge on how to deal with him he now has the DANGER tag on him. When I did the workshops last week I learned so much about how to deal with his behaviour and it was amazing. It did cost me money but I would be willing to do anything to help him as any parent would with their child. If I hear "he's just being a naughty boy" one more time out of someone at his school I'm going to explode. He doesn't understand emotions or feelings and it brings me to tears knowing he doesn't even know what makes him happy because he doesn't understand the word. This is something a psychologist that we are seeing is helping him with but for a price. $220 for a 1 hour session. That's $3.66 per minute. By god it's worth it but at the moment we have to wait for Pat to return to work out at sea so Callum can go to another session. I can't pull that much money out of my arse every fortnight.
Why is our government not helping us? This diagnosis has been around since 1943 so why are we all still struggling so bad. 1 out of 110 people in Australia are on the spectrum and that is just the ones that have been officially diagnosed. Why has everything stopped since Callum started mainstream school fulltime? When he was still doing 2 days at special school, he got session blocks of speech therapy and occupational therapy. Now he gets nothing because he is at a mainstream school fulltime. So what because he's at school fulltime he's cured and doesn't need any of this anymore? What a load of crap (actually that is one of the nicer words I choose to use). He barely talked until he was 4 years old. Of course he is still going to need speech therapy. Ahh but we can still have it for a price. Occupational therapy. His main trigger is writing and cutting at school (along with the other 90% of kids with Autism). He needs help strengthening the muscles in his wrist hence the OT. Both of these services I was getting last year have stopped. Shit he must be cured.
Trying to get money out of DSQ for all of this is hard to. Sure I need a break. A one way ticket to Hawaii looks really good some days but in reality all I want to do is help my son. When his paediatrician can't even give me the correct terminology on his diagnosis sheet and then stuffs me around trying to get the right ones, it's days like that I wish someone would wave a magic wand and make it all better. I am my son's advocate. He is just a 6 year old little boy. I have to fight for him. The system is failing us big time and I can completely understand why there are parents moving overseas because there are better services.
Currently all I (and I'm sure a lot of parents with a child with a disability) get for being the main caregiver for my child is a whopping big $114 a fortnight. A huge 34cents an hour. As I said in my last blog the money isn't too crash hot but the benefits outweigh that. I am one of the lucky ones who's child does show them affection and I get lots of hugs and kisses. I am so grateful for that. The rest of the world around me shits me to tears. If I stay on here much longer I could rant forever and being angry all the time isn't good for anyone. I don't want pity I just want help. This journey isn't going to get any easier and I know that.
I know I am not alone. After watching the article on A Current Affair last night with the Autism Forum I very much realised that I am not alone. It's not fair. I have a gorgeous little 6 year old boy that is a huge part of my world and he is suffering. So many times I feel like I have failed him and it makes me feel like absolute crap. He is 6. He is just a little boy. Due to his school lacking knowledge on how to deal with him he now has the DANGER tag on him. When I did the workshops last week I learned so much about how to deal with his behaviour and it was amazing. It did cost me money but I would be willing to do anything to help him as any parent would with their child. If I hear "he's just being a naughty boy" one more time out of someone at his school I'm going to explode. He doesn't understand emotions or feelings and it brings me to tears knowing he doesn't even know what makes him happy because he doesn't understand the word. This is something a psychologist that we are seeing is helping him with but for a price. $220 for a 1 hour session. That's $3.66 per minute. By god it's worth it but at the moment we have to wait for Pat to return to work out at sea so Callum can go to another session. I can't pull that much money out of my arse every fortnight.
Why is our government not helping us? This diagnosis has been around since 1943 so why are we all still struggling so bad. 1 out of 110 people in Australia are on the spectrum and that is just the ones that have been officially diagnosed. Why has everything stopped since Callum started mainstream school fulltime? When he was still doing 2 days at special school, he got session blocks of speech therapy and occupational therapy. Now he gets nothing because he is at a mainstream school fulltime. So what because he's at school fulltime he's cured and doesn't need any of this anymore? What a load of crap (actually that is one of the nicer words I choose to use). He barely talked until he was 4 years old. Of course he is still going to need speech therapy. Ahh but we can still have it for a price. Occupational therapy. His main trigger is writing and cutting at school (along with the other 90% of kids with Autism). He needs help strengthening the muscles in his wrist hence the OT. Both of these services I was getting last year have stopped. Shit he must be cured.
Trying to get money out of DSQ for all of this is hard to. Sure I need a break. A one way ticket to Hawaii looks really good some days but in reality all I want to do is help my son. When his paediatrician can't even give me the correct terminology on his diagnosis sheet and then stuffs me around trying to get the right ones, it's days like that I wish someone would wave a magic wand and make it all better. I am my son's advocate. He is just a 6 year old little boy. I have to fight for him. The system is failing us big time and I can completely understand why there are parents moving overseas because there are better services.
Currently all I (and I'm sure a lot of parents with a child with a disability) get for being the main caregiver for my child is a whopping big $114 a fortnight. A huge 34cents an hour. As I said in my last blog the money isn't too crash hot but the benefits outweigh that. I am one of the lucky ones who's child does show them affection and I get lots of hugs and kisses. I am so grateful for that. The rest of the world around me shits me to tears. If I stay on here much longer I could rant forever and being angry all the time isn't good for anyone. I don't want pity I just want help. This journey isn't going to get any easier and I know that.
Friday, March 16, 2012
Dont be afraid and dont feel guilty
In my last post I talked about that feeling of wanting to give up. Don't. You are such a strong person and you don't even realize it. When you're at the end of your tether and it feels like everything is falling apart don't be afraid to ask for help. As parents we don't have super powers (even though some times the kids think I'm magic which is pretty cute), we don't have every single answer to every single question that is brought to us. DON'T BE AFRAID TO ASK FOR HELP! I have always been the kind of person (and I still am) that puts everyone before me. I have always been there to help anyone who needed a hand. It doesn't bother me because that's the kind of person I am. Over the last few weeks though I have thought to myself "when am I ever going to come first?". A wave of guilt came over me. I have a son with Autism plus 2 other children that completely depend on me for a lot of the time and it would be totally selfish of me to worry about me...... Well how wrong was I..... I lost it. I was a blubbering mess with a slightness of pity party starting (anyone who knows me knows I hate that game). But it has become better. I found a hobby which I absolutely love and that's my time for me. Reason being if we don't take time out for ourselves as parents and we fizzle out then the whole house falls apart. It's true I watched it happen in my own home. I did get to a stage where it was like if I just smile and pretend that nothing was wrong then I was going to be fine. Then my world came crashing down around me. I am human after all. At the end of the day something has to give and every parent deserves something resembling a break. Don't feel guilty about it. The world will not end if you take a few hours or even a weekend out for yourself. It may be just the thing you need.
Thursday, March 15, 2012
Information is the key
For all of us parents with children with any form of disability, not just Autism, our job is primarily to care, nurture and advocate for them because they can't do it themselves. Even just our kids in general. Being a parent is a lifelong employment opportunity and lets face it the pay isn't overly fantastic but the benefits outweigh that. But what happens when it gets too much? What happens when you do have that time when you just want to have a break down and give up? Trust me it does happen. It happens to a lot of us. In most cases when you hold that gorgeous baby in your arms you are nowhere near able to predict the events that are going to take place on a daily basis for the rest of your life.
As a parent of a child (possibly 2) with Autism, on top of the usual chef, laundromat and cleaner that mums are, I am also a researcher and advocate for my son. Finding the right information is essential. I already know a lot about sensory issues but there is always room for more information.
Yesterday I did two workshops at Autism Queensland and honestly they blew my mind. Seriously if you are a parent in Queensland I really do highly recommend their workshops no matter what age your child with Autism or Aspergers is. I learnt so much helpful information with for one what ASD is and what it means and how to deal with Challenging Behaviour. The main thing I learnt yesterday is that behaviour = communication. It's not that Callum is being a 'little turd' so to speak but it is his way of communicating that there is something he can't handle, he needs help and basically that something isn't quite right. They helped me identify his triggers and what to use to motivate Cal. I was so grateful also for all the teachers I saw there yesterday. These women and men are the lovely people who are there to educate our kids and they need this info just as much as we do.
So if you have a place like AQ that you can get info or help from USE IT! That's what they're there for. I definately walked out of there yesterday feeling more positive and feeling more able to cope. I was even still positive with the peak hour traffic I got to drive home in lol.
Here are some links below for Autism Support Services throughout each state in Australia
Autism Queensland
Autism Spectrum Australia
Autism Western Australia
Autism South Australia
Autism Tasmania
Autism Northern Territory
Autism Aspergers Advocacy Australia
I am doing more research to find other sources as well a bit later. Hope you all find some of these links highly useful :)
As a parent of a child (possibly 2) with Autism, on top of the usual chef, laundromat and cleaner that mums are, I am also a researcher and advocate for my son. Finding the right information is essential. I already know a lot about sensory issues but there is always room for more information.
Yesterday I did two workshops at Autism Queensland and honestly they blew my mind. Seriously if you are a parent in Queensland I really do highly recommend their workshops no matter what age your child with Autism or Aspergers is. I learnt so much helpful information with for one what ASD is and what it means and how to deal with Challenging Behaviour. The main thing I learnt yesterday is that behaviour = communication. It's not that Callum is being a 'little turd' so to speak but it is his way of communicating that there is something he can't handle, he needs help and basically that something isn't quite right. They helped me identify his triggers and what to use to motivate Cal. I was so grateful also for all the teachers I saw there yesterday. These women and men are the lovely people who are there to educate our kids and they need this info just as much as we do.
So if you have a place like AQ that you can get info or help from USE IT! That's what they're there for. I definately walked out of there yesterday feeling more positive and feeling more able to cope. I was even still positive with the peak hour traffic I got to drive home in lol.
Here are some links below for Autism Support Services throughout each state in Australia
Autism Queensland
Autism Spectrum Australia
Autism Western Australia
Autism South Australia
Autism Tasmania
Autism Northern Territory
Autism Aspergers Advocacy Australia
I am doing more research to find other sources as well a bit later. Hope you all find some of these links highly useful :)
Friday, March 9, 2012
Thank God for Technology!
Last night I got a bit spontaneous..... Pat is about to swing back out to sea next week and I realised that the 4 weeks he has been home we haven't been out to dinner or anything as a family so I thought screw it we're going. To most people this is somewhat of a normal adventure but for us it was a whole different ball game. We went out to a tavern that has a children's play area so we thought yep this place is the go. All in all we had a good night and I didn't feel the need to become intoxicated so that was a good sign lol.
I had to use my extreme negotiating skills when we first got there because Cal felt the need to take an Optimus Prime toy and his drink bottle into dinner with us. After 5 minutes of negotiating I managed to get him to put the drink bottle back in the car but he still took the toy. I told him I would buy him a drink so that made him happy. Just as we got inside Cal took the bolt into the gaming area. Pat explained to him that thats the adult playground and kids aren't allowed in there. When we got inside and were seated Cal didn't want to sit with us..... he's 6 years old and already we aren't cool enough lol. After a couple of minutes we convinced him to sit with us and he was all good. Then all 3 of them realised that there was a play area. We let them go off after we ordered (Patty supervised) and so far the night was doing alright.
All 3 kids wanted a cheeseburger and chips meal. The boys weren't too impressed when it came out and there was this stuff called salad on their burgers. All that Cal ended up eating was his chips and a few bites of the bun. Then the fun started. I was only a quarter of the way into my meal and Patty was about the same. Callum had finished what he wanted to eat then he wanted to bolt back into the play area. I couldn't see it from where we were sitting so it was out of the question........ right now all I wanted was to sit and finish my dinner and not have to deal with my 6 year old who was sitting on the floor trying to escape. Thank God for technology!!! I had to give him my iPhone. He was finished and determined that he was going and leaving us behind. Normally I would seriously frown at it but I just wanted to finish my dinner. At home when they finish they just put their plates in the sink then go and play. Can't do that at a pub. A week ago when my Mum and I were out at the shops we went to lunch and saw a family and all 3 boys were on an iPod Touch each. I was thinking OMG how sad. Mum and Dad were talking amongst themselves and these boys were just left there playing video games. I didn't want to give Callum my iPhone but I knew that it was going to be the only thing that stopped him attempting a runner. I decided that straight after dinner we would take them out for icecream. They didn't want to leave until I told them we were going to Maccas. I figured it was easier. I knew they weren't going to eat much of their dessert and just wanted to play. So after eating about 4 spoonfuls of their icecream each they were allowed to let loose in the playground at Maccas.
They were having a ball. There were other kids there they could play with and I was lucky enough to get talking to one of the parents there and she has a 13yo with Autism. She gave me some helpful hints of things I could do and it was fantastic talking to her. She knows exactly what I've been going through and let me in on the best bits with government departments that are yet to come with how helpful they are.
So a good night came to an end and I actually fell asleep by about 9.30pm because I was exhausted. Today we are doing some stuff around home but might go out a bit later. It is nice to actually be getting out as a family and doing things. As you can tell we don't get to do it very often.
I had to use my extreme negotiating skills when we first got there because Cal felt the need to take an Optimus Prime toy and his drink bottle into dinner with us. After 5 minutes of negotiating I managed to get him to put the drink bottle back in the car but he still took the toy. I told him I would buy him a drink so that made him happy. Just as we got inside Cal took the bolt into the gaming area. Pat explained to him that thats the adult playground and kids aren't allowed in there. When we got inside and were seated Cal didn't want to sit with us..... he's 6 years old and already we aren't cool enough lol. After a couple of minutes we convinced him to sit with us and he was all good. Then all 3 of them realised that there was a play area. We let them go off after we ordered (Patty supervised) and so far the night was doing alright.
All 3 kids wanted a cheeseburger and chips meal. The boys weren't too impressed when it came out and there was this stuff called salad on their burgers. All that Cal ended up eating was his chips and a few bites of the bun. Then the fun started. I was only a quarter of the way into my meal and Patty was about the same. Callum had finished what he wanted to eat then he wanted to bolt back into the play area. I couldn't see it from where we were sitting so it was out of the question........ right now all I wanted was to sit and finish my dinner and not have to deal with my 6 year old who was sitting on the floor trying to escape. Thank God for technology!!! I had to give him my iPhone. He was finished and determined that he was going and leaving us behind. Normally I would seriously frown at it but I just wanted to finish my dinner. At home when they finish they just put their plates in the sink then go and play. Can't do that at a pub. A week ago when my Mum and I were out at the shops we went to lunch and saw a family and all 3 boys were on an iPod Touch each. I was thinking OMG how sad. Mum and Dad were talking amongst themselves and these boys were just left there playing video games. I didn't want to give Callum my iPhone but I knew that it was going to be the only thing that stopped him attempting a runner. I decided that straight after dinner we would take them out for icecream. They didn't want to leave until I told them we were going to Maccas. I figured it was easier. I knew they weren't going to eat much of their dessert and just wanted to play. So after eating about 4 spoonfuls of their icecream each they were allowed to let loose in the playground at Maccas.
They were having a ball. There were other kids there they could play with and I was lucky enough to get talking to one of the parents there and she has a 13yo with Autism. She gave me some helpful hints of things I could do and it was fantastic talking to her. She knows exactly what I've been going through and let me in on the best bits with government departments that are yet to come with how helpful they are.
So a good night came to an end and I actually fell asleep by about 9.30pm because I was exhausted. Today we are doing some stuff around home but might go out a bit later. It is nice to actually be getting out as a family and doing things. As you can tell we don't get to do it very often.
Sunday, March 4, 2012
The start to a new week
Well I have to say this weekend was pretty awesome! I had a great day out with Mum on Saturday and went shopping. Was nice to get out of the house without the kids. Having say that they each got a new pair of shoes and Pat got a new chopping board (when you're married to a chef kitchen buys are acceptable lol). Today the kids had a ball of fun. We went on a family picnic to the park and they wore themselves out on the play equipment. Callum had an absolute blast! We don't get out much as a family because normally by the time the weekend comes we are too exhausted to do anything. Either that or there is a million things at home to do. Here's some photos of the kids having fun (even the big kid I call my husband)
This is on a rope obstacle course thingy the kids were on it nearly all day! Wish I had one of these set up in the back yard lol.
A picture I got of Pat and Callum. Love this picture. Callum is sitting in the tree and Pat has to stand on the park table under it. Callum has no fear of heights by the looks of it. We found out because when we tried to get the same shot with his sister she refused to let go of her father lol.
This is my brother William. He loves getting his photo taken and by the looks of it had a pretty good day to.
So the weekend is over and it is the start of a new week. A biiiiiig long list of things to do already as we are enrolling Cal in a different school so we have to look at how we are going to transition him into a new place. He already has a couple of new friends that he used to go to Special School with so that should fingers crossed make it easier for me. I also brought some sewing supplies so I am going to experiment this week with a new hobby.
Ciao for now :)
Subscribe to:
Posts (Atom)