tag:blogger.com,1999:blog-12934131400883782182024-03-13T18:04:09.596+08:00This is No Ordinary KidFamily life, raising a child with special needs after surviving Meningitis.Unknownnoreply@blogger.comBlogger214125tag:blogger.com,1999:blog-1293413140088378218.post-26886251784066803002024-01-30T16:02:00.000+08:002024-01-30T16:02:40.006+08:002023 was a Big Year for Cameron<br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCEYzpzBZprct0nvgKbj-7XEBzdyJg9CJW0cvyu9ITIuV2ZcBp2f7gepljl2EQffs8O8-wImHMk14rsO39pAOCQANNOJiNq_1LQpHwhLn3jvxcGyZhoOxyFYWR0iQhmY26Gwk-j1qWLjW1ArvualYjK8ZnO-t1qBYl8XqqEG3ILHtkBoRPRzOatCeHRzR5/s1586/Cameron%20June%202023.jpeg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1586" data-original-width="1291" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCEYzpzBZprct0nvgKbj-7XEBzdyJg9CJW0cvyu9ITIuV2ZcBp2f7gepljl2EQffs8O8-wImHMk14rsO39pAOCQANNOJiNq_1LQpHwhLn3jvxcGyZhoOxyFYWR0iQhmY26Gwk-j1qWLjW1ArvualYjK8ZnO-t1qBYl8XqqEG3ILHtkBoRPRzOatCeHRzR5/s320/Cameron%20June%202023.jpeg" width="260" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron 2023 - 28yrs old</td></tr></tbody></table><p>I can not believe it has been a year since I have updated the blog but on the other hand I can believe it because 2023 was a long and hard year.</p><p><br /></p><p>Cameron is now 28yrs old and still learning new skills as he goes. He lives at home with our family, which has grown to 5 adults, our dog Lucy and our two cats, BJ and Dave. Cameron had to farewell his dog Rocco last year which was really sad and we welcomed Dave, from over the fence, to the family. Long story short, our cats love each other and Dave made it very clear that he wanted to live with BJ, so Dave moved in permanently with both families blessings. Dave is very good with Cameron and tolerates being carried around and hugged by him, which reminds me of Cameron with his cat Pav. </p><p><br /></p><p>Thankfully we still have NDIS support and with that funding we are able to employ 2 support workers for Cameron. This has meant that collectively we are able to support Cameron to work and live a fulling life. No more disability tourist trips and mindless hours to fill. One support worker excels at networking and integrated Cameron into a group of disabled young men who welcomed Cameron into their social group and activities. It is wonderful when support workers support each other for the best outcomes for their clients. </p><p><br /></p><p>Cameron's business, <a href="https://www.facebook.com/CameronCollects/" target="_blank">Cameron Collects</a>, is still going and growing. Cameron has an amazing community that has grown up around him and they are supporting him to live every day with meaning and purpose. He works 4 - 5 days a week collecting drink containers and recycling them through <a href="https://www.containersforchange.com.au/wa/" target="_blank">Containers for Change WA</a>. It's a dirty job but Cameron loves going out in the van, carrying bags of containers and meeting his collectors. He gets upset when he thinks it's a work day and we tell him it isn't. </p><p><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDJcKxTbByh7th4B0Lv5JDWKDKDMeFYgtVHBv3En0YtWu8sy9jmYyZjMAgo2Yd9pfcwofb-HR8ONd9eQW_v6Da_WskHbBxaGo5CzG_S-0exNQBOh4FviRuKpfSLcQ1XBl7zmIVwO8VI61XVrSUqDHOG_3Mw69_Cy_zn66iDm220ioWcSB7Ac9d27o6xwaf/s1082/Cameron%20Collects%20Green%20Bag.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1082" data-original-width="846" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDJcKxTbByh7th4B0Lv5JDWKDKDMeFYgtVHBv3En0YtWu8sy9jmYyZjMAgo2Yd9pfcwofb-HR8ONd9eQW_v6Da_WskHbBxaGo5CzG_S-0exNQBOh4FviRuKpfSLcQ1XBl7zmIVwO8VI61XVrSUqDHOG_3Mw69_Cy_zn66iDm220ioWcSB7Ac9d27o6xwaf/s320/Cameron%20Collects%20Green%20Bag.jpg" width="250" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron 2023 - Cameron Collects</td></tr></tbody></table><p>Cameron has made lots of friends at the depot where he recycles the drink containers and the staff are amazing with him. Visiting the depot at the end of each work day is a highlight of the day. He has been supported to learn new skills and help wherever possible in the process of unloading and sorting containers for counting. Cameron, being Cameron, loves to social with the other customers and takes any opportunity to socialize with the staff. </p><p><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ_2k_1J5wvQyq6onEcGwIDfGp_58YVZsDbI6BpYRMOy2Q_YVyK1js_EBvtdNm5AYG-Pym9_iE9V68Uy7-4egyALquNcflc7YKJsu_Ge9bqRzu8cqturgy3rXa4eZBMTUdJTqUoxyT8ZaD0uwL0Sx-04kUa4b8JlaKibx9Jp6qsCP2-J6MvknVlY3-htf4/s315/Cameron%20at%20depot%202023.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="315" data-original-width="315" height="315" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ_2k_1J5wvQyq6onEcGwIDfGp_58YVZsDbI6BpYRMOy2Q_YVyK1js_EBvtdNm5AYG-Pym9_iE9V68Uy7-4egyALquNcflc7YKJsu_Ge9bqRzu8cqturgy3rXa4eZBMTUdJTqUoxyT8ZaD0uwL0Sx-04kUa4b8JlaKibx9Jp6qsCP2-J6MvknVlY3-htf4/s1600/Cameron%20at%20depot%202023.jpg" width="315" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron 2023<br /><a href="https://www.containersforcashmandurah.com/" target="_blank">Containers for Cash Mandurah</a><br /></td></tr></tbody></table><p>The last time I wrote a blog post Cameron had a van for work that we called CC. CC is no more. She kept breaking down and we couldn't afford or justify the repairs anymore. That made the year difficult as we were back to collecting containers with the trusty old station wagon. On top of that we only had one support worker for a while and at random times, no support. Life was tiring and challenging and Cameron and I spent a lot of the year living and working together. </p><p><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhouLblafPyud7W-vQpeDZs8iSGymm1fKnzSjresI4MyTYQpUF1KzblXUultBadrQC6hyBNHGfCjEp_d19zXUGXYxBE56VD4MSv0IZymQcKwpzUBzDTcjwNkghkAT3r1z7uC5b_YlnjJJweOSpwh6tpQ9ZFTarOdQ657jfQ-8MeKqT7jAcfALmkJ2VniSVU/s2048/Cameron%20&%20Jane%20May%202023.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1310" data-original-width="2048" height="205" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhouLblafPyud7W-vQpeDZs8iSGymm1fKnzSjresI4MyTYQpUF1KzblXUultBadrQC6hyBNHGfCjEp_d19zXUGXYxBE56VD4MSv0IZymQcKwpzUBzDTcjwNkghkAT3r1z7uC5b_YlnjJJweOSpwh6tpQ9ZFTarOdQ657jfQ-8MeKqT7jAcfALmkJ2VniSVU/s320/Cameron%20&%20Jane%20May%202023.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron and Jane <br />2023<br />Working together</td></tr></tbody></table><p>Life took a positive turn when we were able to reemploy one of Cameron's previous support workers. After some reorganization so Cameron could keep work, home and community access separate from each other we settled into a much healthier balance of life with two support workers again.</p><p><br /></p><p>We all worked hard, saved hard, and with the help of some amazing people, we bought a new van for Cameron and Cameron Collects. It had been really hard collecting without a van so the day we picked up the van was very exciting and very emotional. Cameron was so excited to drive away in his new van because as you know - Cameron loves cars and this one was his. </p><p><br /></p><p></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl19r0Q8ShWpYqqERKAHMA5wZx5kdz2JWEufJ0D8iB5cQVdhJg_0-RNK9vtngFBRimzqKBtYfh49lg52uHRNpVSVAY8ud6QVUScvTLxtNpanfPuLLAzzqcZ83gmhwbZVy4JXc_VewJ5PEC1u_fOr-HgStxZg0lGYJDM9Uo3s8XXZ6BPQYMyf1kgh2xU0tf/s3967/Cameron%20Collects%20Van%202023.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2536" data-original-width="3967" height="205" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl19r0Q8ShWpYqqERKAHMA5wZx5kdz2JWEufJ0D8iB5cQVdhJg_0-RNK9vtngFBRimzqKBtYfh49lg52uHRNpVSVAY8ud6QVUScvTLxtNpanfPuLLAzzqcZ83gmhwbZVy4JXc_VewJ5PEC1u_fOr-HgStxZg0lGYJDM9Uo3s8XXZ6BPQYMyf1kgh2xU0tf/s320/Cameron%20Collects%20Van%202023.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">New Cameron Collects Van 2023<br />LDV G10+<br />Purchased: <a href="https://www.rockinghamauto.com.au/" target="_blank">Rockingham Auto Group</a><br />Vehicle Signage: <a href="https://aaawindscreens.com.au/" target="_blank">AAA Windscreens & Tinting</a><br /></td></tr></tbody></table><p></p><p>Since the arrival of the van and the increase of support, life has been so much easier and more enjoyable. Cameron and I are no longer living and working in each other's pockets and the stress of life has decreased significantly with more help. I have been able to pull back from regularly helping Cameron with collections and focus more on the administration side of the business. When I am on the road with Cameron collecting we have a great time but I think he'd prefer to not take Mum to work with him. </p><p><br /></p><p>So that is a quick snap shot of 2023, it was mostly about <a href="http://cameroncollects.weebly.com/" target="_blank">Cameron Collects</a> for Cameron. I'm proud of Cameron, he coped with 2023 really well, despite the stresses and changes that surrounded him throughout the year. It was wonderful to watch his confidence grow and his understanding of processes and routines grow. He still needs constant supervision and guidance in all areas of his life, we can't take our eyes off him. There is nothing more heart stopping than to look across as you climb into the work van and realize Cameron is nowhere to be seen. He thinks it's a huge joke to hide from me on the other side of the van or he'll suddenly decide a door needs to be reopened and reclosed or he wants to take a look at the back of the van - Not funny Cam!</p><p><br /></p><p>We're looking forward to what 2024 is going to bring. So far it's been a hot and busy start to the year because summer is the busiest time of the year for drink container collectors but there are smiles all around - especially because the new van has air conditioning. </p><p><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiyu6sH7CxOEV9DSpf-R8AUjrY_HpOC-MkvERQ8fRRcWjysNkcyPL_cNKE3Pf5HFqUQoqKVJMOYHf92mqtsamQj9IeBiL_Gz5PJVFB0xh8MtYtPhef9bf1mA4RJAsG1c3MZqqAv-a76hYp7wk8iec4fmrxLej2nGUaNwxUpuXRaHQhzTb6-xTJLG-WN-jT/s2048/Cameron%20December%202023.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1499" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiyu6sH7CxOEV9DSpf-R8AUjrY_HpOC-MkvERQ8fRRcWjysNkcyPL_cNKE3Pf5HFqUQoqKVJMOYHf92mqtsamQj9IeBiL_Gz5PJVFB0xh8MtYtPhef9bf1mA4RJAsG1c3MZqqAv-a76hYp7wk8iec4fmrxLej2nGUaNwxUpuXRaHQhzTb6-xTJLG-WN-jT/s320/Cameron%20December%202023.jpg" width="234" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron December 2023</td></tr></tbody></table><br /><p><br /></p><p><br /></p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1293413140088378218.post-21416893197588675382023-02-22T04:06:00.003+08:002023-02-22T04:16:06.277+08:00Cameron Collects<p></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgglj4IAN7aYhkIVBgQCyUuTo5f-bOXI_axb6XRzpe6KNUidWO5FtAVwJz-lrwCRAR9zNia4vsWXZR33XV13NyzQmwxiSDio5L5Y048CS7VZkd80SzbuVUh5p8Ul7bE1L5mE6ddqsuBmsK93_-wQizBuFGHDMbqxpC9D1ZHzwq-EimGWM4rIupH39dYtA/s2923/Cam%20in%20his%20van.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2923" data-original-width="2407" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgglj4IAN7aYhkIVBgQCyUuTo5f-bOXI_axb6XRzpe6KNUidWO5FtAVwJz-lrwCRAR9zNia4vsWXZR33XV13NyzQmwxiSDio5L5Y048CS7VZkd80SzbuVUh5p8Ul7bE1L5mE6ddqsuBmsK93_-wQizBuFGHDMbqxpC9D1ZHzwq-EimGWM4rIupH39dYtA/s320/Cam%20in%20his%20van.jpg" width="264" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron Collects 2023</td></tr></tbody></table><br />It's been a while since I have updated you on where we are at with Cameron Collects. To say the last two years have been a roller coaster on a merry go round, spinning backwards might just about describe this incredible journey we're on. But we have hung on for the ride through covid, heat, rain, van breakdowns, cockroaches and ants and we are still smiling. <p></p><p>Creating Cameron Collects is one of the better ideas I have had. We had no idea the difference starting this business would make for Cameron. In two years we have seen Cameron's confidence grow, his strength improve, his fine and gross motor skills improve, his attempts at language increase, his balance and spatial awareness improve, his ability to predict and prepare for consequences improve. The list goes on and on. </p><p>Cameron is proud to have a business, he is proud to put on his work shirt and hop into his work van. He loves meeting his collectors and he loves catching up with the staff at Containers for Cash Mandurah, when he recycles. On days when he doesn't work it's not unusual for him to point at the clock and sign work to me because he doesn't want to stay home anymore. </p><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ0Mn13FURI_YDCzYQ2yWWVlKshpfqgZopBMdqyCc2rSgbwsHJxjL4gR30p3E6tUULrN5iqmXhPiEef3apzZiTrFiwCje5tPhk2whfpR64QUbEWI2238JxWQy3D8I2iuzcfqlzILOZsCL8yLsb29LpeeDFib1yp5wY06jZOZ9jEyN1ZOknmUsvxj9mTA/s1084/IMG_6927.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1084" data-original-width="873" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ0Mn13FURI_YDCzYQ2yWWVlKshpfqgZopBMdqyCc2rSgbwsHJxjL4gR30p3E6tUULrN5iqmXhPiEef3apzZiTrFiwCje5tPhk2whfpR64QUbEWI2238JxWQy3D8I2iuzcfqlzILOZsCL8yLsb29LpeeDFib1yp5wY06jZOZ9jEyN1ZOknmUsvxj9mTA/s320/IMG_6927.jpg" width="258" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron Collecting 2022</td></tr></tbody></table><p>Cameron is still Cameron. He's still cheeky, he will go off and chat to collectors and leave me or his support worker to do all the dirty work but we let him do it because it's building his independence and confidence. He can now lift heavy bags and walk decent distances with bags full of drink containers. He laughs when I wipe my beer covered fingers on his shirt and sings along to songs on the radio with me without a care in the world. </p><p>He works 4 days a week now, sometimes 5 if we add in extra collections on weekends for difficult or large collections. And he has a community of collectors who care about him and support him, collecting their containers and leaving them out for him to collect. He also has a growing community of business owners supporting him. </p><p>As a business we set ourselves goals to provide a reliable service to Cameron's collectors, so if we say he is going to collect we do everything possible to collect. This has proved difficult at times with covid putting me in bed for weeks and Cameron on the couch for a week. And then there has been CC - Cameron's work van. </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5uUgRfON-UAV2KMbogEes8twhkDQW-JkfKDXD9MeRrzZU8E83OHBXgRjXBuk8Vk6k0Nh3eFZm1N4WlRMayiOonr8UAOc0YOOcrsFsre96H1cREOgtIPSs7cW8JKhyFhDvUh9SvJE6Jor2dmOJnsICW38EhXtAgxS5CrcTFJIJcX6jx0jlRAR5dBCdrQ/s4032/Cam's%20new%20van.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5uUgRfON-UAV2KMbogEes8twhkDQW-JkfKDXD9MeRrzZU8E83OHBXgRjXBuk8Vk6k0Nh3eFZm1N4WlRMayiOonr8UAOc0YOOcrsFsre96H1cREOgtIPSs7cW8JKhyFhDvUh9SvJE6Jor2dmOJnsICW38EhXtAgxS5CrcTFJIJcX6jx0jlRAR5dBCdrQ/s320/Cam's%20new%20van.JPG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The Cameron Collects Van - CC 2021</td></tr></tbody></table><br /><p>CC is over 20 years old and had seen a lot of life when we bought her. Since she joined Cameron Collects she's seen a whole lot more life, often sloshing with beer dregs and cockroaches trying to hide as we've driven thousands of kilometres. She has introduced me to tow truck drivers, the lovely telephone operators at RACWA and the mechanics at Mandurah Mazda. She has been off the road so many times I've lost count and earlier this month I had to make the heart breaking decision to retire her because the costs of repairs were no longer justifiable. </p><p>CC's retirement gave us reason to pause and contemplate the journey we've been on, and whether we want to continue. Without hesitation the family agreed we couldn't stop Cameron Collects, it has to continue. It's hard work both physically and administratively but what we have created and what it has done for Cameron makes it all worthwhile. So we are going to continue to work hard, save and buy another van but this time a new van so it's more reliable. In the meantime the trusty station wagon that we started in is back doing collections again except this time I now have no car when Cameron has the station wagon (My Little Angel now has her licence and our car) and I am wondering how I used to fit all the collections in the station wagon - we have a lot more collectors now. </p><p>I am so grateful for all the support we've received for Cameron as we've created Cameron Collects. If I thanked everyone personally the list would go on and on but here are a few special mentions: Containers for Change WA, Containers for Cash Mandurah, Mastec, Mandurah Mazda, Glenn Longmire & Associates, all of Cameron's collectors both home and business collectors, Cameron's Drop off Point collectors, Cameron's support workers, our supportive family and friends, the WA Containers for Change community and a special new supporter Duncan. An extra special mention has to go to Cameron's support worker Angela - we couldn't do it without her. As her name suggests, she's our angel. </p><p>Please don't send your drink containers to landfill. If you live in WA please recycle them through Containers for Change WA and if you live in the Perth or Peel regions consider letting Cameron collect them so we can show everyone that people with disabilities have abilities and can work too. </p><p>If you'd like to keep up with our Cameron Collects news we have a Facebook page: <a href="https://www.facebook.com/CameronCollects" target="_blank">Cameron Collects</a> </p>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1293413140088378218.post-63542121707639711132021-02-08T22:07:00.000+08:002021-02-08T22:07:26.449+08:00Life is Changing Again<p><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXPwM6WL7eJiT5wbVkxI6MngQsrFJlhZIxhBMznFcvtk0xPEk4NQm2Xh5RawtrPabljC6C_SWI5SqryKLAZ-FQbLx8s7Uw5CDCY9WKKTcjKOMczllb2Z8DX1clhYQLs-r_cxoyVJWKiGYX/s843/Cameron+and+Zoe+7.2.21.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="785" data-original-width="843" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXPwM6WL7eJiT5wbVkxI6MngQsrFJlhZIxhBMznFcvtk0xPEk4NQm2Xh5RawtrPabljC6C_SWI5SqryKLAZ-FQbLx8s7Uw5CDCY9WKKTcjKOMczllb2Z8DX1clhYQLs-r_cxoyVJWKiGYX/s320/Cameron+and+Zoe+7.2.21.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron and Zoe<br />February 2021</td></tr></tbody></table><p><br />Our family is going through another transition phase and Cameron is struggling. </p><p>His sister got her drivers licence and as we all know with your drivers licence comes freedom. We hardly saw her for the first week and then lockdown struck and she was home with us for the week - thanks Covid 19. </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRmItq7Z363ZCx110z0SouI3L-NJU3jVevLbLZFwvaekmZPEj_KZb-aBEy3mu8vbMnqBvuFUoNMZ0g0OVyNvM2qdnJDJDaOqMIqnN3gb_lC7EAj9fsBGj82D5qRL0_wAs9KcPcEie8V3Cq/s960/Zoe+Drivers+Licence+January+2021.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRmItq7Z363ZCx110z0SouI3L-NJU3jVevLbLZFwvaekmZPEj_KZb-aBEy3mu8vbMnqBvuFUoNMZ0g0OVyNvM2qdnJDJDaOqMIqnN3gb_lC7EAj9fsBGj82D5qRL0_wAs9KcPcEie8V3Cq/s320/Zoe+Drivers+Licence+January+2021.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Zoe - Drivers Licence<br />January 2021</td></tr></tbody></table><p><br />This week life has started to return to normal and with that comes My Little Angel heading out the door again and this time she is starting her new routine of daily commitments for the year. </p><p>Cameron isn't the only one struggling. The nest is not empty, far from it, but my life is changing dramatically too. Both my children are transitioning. I have been a full time chauffeur for over 25 years and suddenly it is all coming to a halt. No more driving backwards and forwards to dancing. No more therapy. No more medical appointments. No more horseriding. No more parties to drop off and pick up from. No more hospital appointments. No more friends to drive to and from. No more work pick ups and drop offs. No more school pick ups and drop offs. No more swimming lessons. No more after school activities. No more sitting in carparks for hours waiting or waiting rooms waiting or cafes/shopping centres waiting. And no more driving for, quite often, 5+ hours a day. </p><p>It's a big transition as one child spreads her wings and embraces her independence and adult life while the other transitions to working and spending more time with others whilst pulling back on the all the regular activities and appointments he used to always have. </p><p>Cameron and I are experiencing this transition very differently. I keep forgetting that my life has changed and I can't get my head around it. Give me time, I'll get there, I'm sure. </p><p>Cameron is experiencing grief. He's angry. He is watching his sister and recognizing that she is free and he is not. We have watched his level of awareness and understanding change recently and this is one of those areas where it has changed. He knows he is being left behind and she is spreading her wings. </p><p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBNal6MjJmZve6kume1Vh_53rppAvQlO62HDmV-pW46zlLy7-JGtd07imq3ZeN1bNQRmknDOQ3Y7JcdYxUCIyORBWhZshzQMvWvfjgeZW7iKY5foVEMFo5TiRxV0Dpan388wpXFvWn2s3O/s1230/Cameron+waiting+for+Zoe+Feb+2021.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1230" data-original-width="860" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBNal6MjJmZve6kume1Vh_53rppAvQlO62HDmV-pW46zlLy7-JGtd07imq3ZeN1bNQRmknDOQ3Y7JcdYxUCIyORBWhZshzQMvWvfjgeZW7iKY5foVEMFo5TiRxV0Dpan388wpXFvWn2s3O/s320/Cameron+waiting+for+Zoe+Feb+2021.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron <br />February 2021</td></tr></tbody></table><br />This afternoon Cameron watched his sister go to work and then he stood at the front door for over 2 hours, after a session of sporadic screaming. He knows his life is different and he knows he is missing out. It makes me cry because prior to this - Ignorance was Bliss for Cameron. This was his third bout of unhappiness this week. </p><p>It's going to be a bumpy transition this time. It's good that Cameron understands his world more but with the loss of naivety comes disappointment and reality. No one should have to watch their younger sister embrace freedom whilst watching from behind locked doors, powerless to change his own predicament. </p><p>Now that we understand his feelings we'll work to make life better. His business is definitely helping - he is enjoying the different tasks and interactions. We definitely started Cameron Collects at just the right time. In the meantime, if you hear some weird noises coming from our house please be understanding, it's just Cameron letting the Universe know that it's not fair. And he's right, it's not fair. </p>Unknownnoreply@blogger.com10tag:blogger.com,1999:blog-1293413140088378218.post-55099962555597144562021-01-03T21:30:00.000+08:002021-01-03T21:30:57.996+08:00Happy New Year - What did we achieve in 2020<p></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDs5hIMZNbINww_lC2-UI2vY-9VmIkDEpB791prraOZush8dKFymTKJfnswGVz2X5fKiPfUUwBPx3ICd9qMcEwLfZLIBu6HfCtiBdwCCANLaAF_u5CUhJoX6JwOEX3KlR1_hE9G2YWv2a_/s960/Cameron+New+Year+20-21.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="646" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDs5hIMZNbINww_lC2-UI2vY-9VmIkDEpB791prraOZush8dKFymTKJfnswGVz2X5fKiPfUUwBPx3ICd9qMcEwLfZLIBu6HfCtiBdwCCANLaAF_u5CUhJoX6JwOEX3KlR1_hE9G2YWv2a_/s320/Cameron+New+Year+20-21.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron - Happy New Year<br />2020 - 2021</td></tr></tbody></table><p></p><div style="text-align: center;"><span style="text-align: left;">Another new year has started - Happy New Year! </span></div><p></p><p>The last 12 months have been highlighted with achieving goals we have dreamt of for Cameron. </p><p>- We enclosed the alfresco and created a room that Cameron can use and enjoy without making life difficult for everyone else. </p><p>- We installed doors to reduce noise in the house so people can work and Cameron can make noise. </p><p>- We installed a one way security front door so Cameron can stand and watch the world go by without being able to be seen - believe me, sometimes you don't want to see what he is up to. </p><p>- We purchased new furniture for his bedroom so it's easier for us to keep his clothes organized and less overwhelming when he empties out his drawers. Plus it made his room more mature and appropriate for his age. </p><p>- We've set up a TV and DVD player in the new room for Cameron so he can watch Wiggles and Playschool, without the rest of the household having to watch Wiggles and Playschool - A LOT!</p><p>- We rearranged the furniture in our living areas so it is more open which helps Cameron to move around more easily and be less overwhelmed. </p><p>And now we have ticked another item off the list - we have an accessible swimming pool for Cameron. </p><p>Cameron loves water, it makes him happy and relaxed. After surviving Meningitis, and being removed from all the life support equipment, Cameron was introduced to the hydrotherapy pool at the hospital as a way to rebuild his muscles - he had less muscle strength than a new born. It was very calming for him and it made him happy. </p><p>Cameron spent two to four hours in pools, every week of his childhood. It became a little more difficult after school because not all support workers wanted to go swimming with a very splashy adult toddler. Plus there was the added complication of female support workers needing to change clothes but not being able to leave Cameron unattended. The obvious solution was a pool of our own and we achieved that dream by the end of 2020. </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirca29QEuKWjZGQzqxDhUr2_tLQFwzcTlwcXRmtkP3mnkEeqj5P7ZvOwZiYXNBE_Zptd0DBgHbdv3IHR-bR8TSW2ipT2VdGy7CtjHfjvXLSUH6N43M1de2p5p_YiWwGC8kL3WKXMPlLeNJ/s960/Cam+in+Pool+Jan+2021.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirca29QEuKWjZGQzqxDhUr2_tLQFwzcTlwcXRmtkP3mnkEeqj5P7ZvOwZiYXNBE_Zptd0DBgHbdv3IHR-bR8TSW2ipT2VdGy7CtjHfjvXLSUH6N43M1de2p5p_YiWwGC8kL3WKXMPlLeNJ/s320/Cam+in+Pool+Jan+2021.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron Swimming <br />January 2021</td></tr></tbody></table><p>We added a handrail to our pool that slopes down the stairs so Cameron can independently enter and exit the pool by himself. We had to have stairs, not a ladder or single step so Cameron can be independent and doesn't have to maneuver to sit on the edge of the pool to enter. We paved with the coolest pavers we could find so Cameron wouldn't burn his feet while he positioned himself to step into the pool or procrastinated about when he would step into the pool. We created a lip over the edge of the pool with the pavers so we can save water when Cameron creates tidal waves - which is one of his favourite things to do in a pool. He can waste a lot of water when he starts splashing. </p><p>Cameron thinks the pool is wonderful and it is so nice to watch him independently enter the pool, have fun and exit all by himself. Sitting and watching him is a bit of a soggy affair - he still splashes a lot but we aren't losing nearly as much water as we could be. And yes, we still have to supervise him when he is swimming, he can't be left alone. </p><p>Of course everyone benefits from these improvements in our home but so many of our decisions and plans stem from wanting to make life easier and more inclusive for Cameron and less stressful for the rest of us. 2020 was not a great year for so many but it will be a year that we look back on as a year of achievements and dreams coming true. </p>Unknownnoreply@blogger.com3Pinjarra WA 6208, Australia-32.6285895 115.8737112-32.657507204640986 115.83937892460938 -32.599671795359008 115.90804347539063tag:blogger.com,1999:blog-1293413140088378218.post-40813860401116395912021-01-02T18:29:00.027+08:002021-01-02T18:57:50.704+08:00Cameron Collects - Cameron has a Business!!!<p class="MsoNormal"></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4GA5zWa20AhN4y-mas3qizNJA5fD-PfNoVAd1g0f0_VVHZrS_Kppdj1XUsS9wwGlZHQeh9iiQhBguikBRnZoXSsCU2yB9asHWFWRh_6xo_HWUGPQm7wKsirrNdrp3zdLi0c-Ld25IlcqI/s2048/IMG_4237+%25283%2529.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1545" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4GA5zWa20AhN4y-mas3qizNJA5fD-PfNoVAd1g0f0_VVHZrS_Kppdj1XUsS9wwGlZHQeh9iiQhBguikBRnZoXSsCU2yB9asHWFWRh_6xo_HWUGPQm7wKsirrNdrp3zdLi0c-Ld25IlcqI/s320/IMG_4237+%25283%2529.JPG" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">First Day - Cameron Collects</td></tr></tbody></table><p></p><div style="text-align: center;"><br /></div>We have
been wanting to create an employment opportunity for Cameron for years but
could never find the answers to the multitude of questions - What? How? Where? When? <p></p><p class="MsoNormal">Then his support
worker had a brilliant idea and Cameron Collects was born.</p><p class="MsoNormal">Cameron Collects is a service to collect recyclable drink containers and recycle them at a <a href="https://www.containersforchange.com.au/wa/" target="_blank">Containers for Change WA</a> recycle centre. Cameron has a growing list of businesses and homes that he is collecting from and all proceeds from his recycling goes to Cameron. We will always have a goal that he is saving towards and his first goal is a car. </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhijH32u8eLNX6VZlI-RdfehSbyuKZkWOEHmKNDoyE4T-CHhjftAEaYDdv4KFR0Emo2YYfh7WqU05TewaFV-wfFELE_YJsV3t-z8BKV5WK3EaRScziQC4QycJgUkMv4j_FeRWni-ev2AeVC/s1874/new+version+%25282%2529.PNG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1874" data-original-width="1155" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhijH32u8eLNX6VZlI-RdfehSbyuKZkWOEHmKNDoyE4T-CHhjftAEaYDdv4KFR0Emo2YYfh7WqU05TewaFV-wfFELE_YJsV3t-z8BKV5WK3EaRScziQC4QycJgUkMv4j_FeRWni-ev2AeVC/s320/new+version+%25282%2529.PNG" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Facebook<br /> <a href="https://www.facebook.com/CameronCollects" target="_blank">www.facebook.com/CameronCollects</a></td></tr></tbody></table><div style="text-align: center;"><br /></div><div>Cameron is now 25 years old. He finished school 7 years ago. For seven years he has been a tourist in his own town visiting parks and beaches and tourist locations. He's spent his days visiting shopping centres and eating lunch in food courts. He's sat in libraries to kill time and joined various disability specific groups for social interaction - some good, some not so good. He's danced, drummed, painted and bowled - to his limited ability. But he doesn't always have a reason to get out of bed and embrace the day. Some days he is stuck at home with Mum and some he is dragged around to whatever Mum is doing that day. He hasn't had a purpose. He hasn't had adult plans and goals. He's never rolled out of bed and groaned because it's a work day but he's also never experienced the elation of pay day. <div><br /></div><div>Cameron's life experience is very different because of his severe brain damage. He still needs 24 hour a day supervision and assistance with every facet of his life - personal care, dressing, toileting, food, communication, safety, interactions, transport. He is one of the lucky meningitis survivors - he learnt to walk, he can eat and drink normal foods, he no longer has any medical conditions (that we know of), he no longer needs any daily medications and he only lost half of his hearing. He is incredibly lucky. You only need to search the hashtag #meningitissurvivor or #meningitis to realize how lucky he is.<br /><br />But - quality of life is important, mental health is important and these are the areas we have struggled to deal with. There's no manual and no guide book. Cameron is unique, there is not another Cameron so we have to figure everything out for ourselves. </div><div><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxJX9qvGQcDliq_y-CHOWwpaGTTp18C-Xis-L2PnvCfg7Dk-DRY0Ssdxv90mEwEHnYEWOnTpGVh67KYK7Ux94pXgD1Y_NXOyulCa-xMyA-o1ki66h2gB0embnJzo7wnBjy8OZpDbGBNsSz/s1989/IMG_4433+%25282%2529.PNG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1989" data-original-width="1159" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxJX9qvGQcDliq_y-CHOWwpaGTTp18C-Xis-L2PnvCfg7Dk-DRY0Ssdxv90mEwEHnYEWOnTpGVh67KYK7Ux94pXgD1Y_NXOyulCa-xMyA-o1ki66h2gB0embnJzo7wnBjy8OZpDbGBNsSz/s320/IMG_4433+%25282%2529.PNG" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Instagram<br /><a href="https://www.instagram.com/cameron_collects/" target="_blank">www.instagram.com/cameron_collects</a> <br /><br /></td></tr></tbody></table></div><div>So this is what we do know - Cameron can carry things and he likes to help people. He loves cars and to go for drives in cars. Cameron loves to meet people and share his Cameron Magic - once you've met him you understand what Cameron Magic is, he leaves smiles and happiness in his wake - despite being non verbal. <br /><br />Cameron Collects is perfect for Cameron - he is driving around and helping people, he is carrying containers and when he meets people he spreads a little happiness. He has a purpose and he is contributing to society. We can create meaningful goals for him such as saving to buy a car - something anybody who knows him, knows he will love. </div><div><br /></div><div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVcVIq7zvOUjJ-53YJLSWEZ3LxcdUaC7-KsrvCgf6MRWtDOyaud_YbVrlxwWP6sQKHAjnlDzjB1u7xLjMKl9IPXCLG4pjvBcrzyuU2oupTty-RCGzlYSF2H2ycFYt6fl4I8-7SDNCb9o1O/s2532/IMG_4432.PNG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2532" data-original-width="1170" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVcVIq7zvOUjJ-53YJLSWEZ3LxcdUaC7-KsrvCgf6MRWtDOyaud_YbVrlxwWP6sQKHAjnlDzjB1u7xLjMKl9IPXCLG4pjvBcrzyuU2oupTty-RCGzlYSF2H2ycFYt6fl4I8-7SDNCb9o1O/s320/IMG_4432.PNG" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Twitter<br /><a href="https://twitter.com/CameronCollects" target="_blank">twitter.com/CameronCollects</a><br /></td></tr></tbody></table> <div class="separator" style="clear: both; text-align: left;">We have registered Cameron Collects as a business and he has an ABN and an excited accountant - who doesn't want to spend his only day off recycling his drink containers. The next step is a logo which we are working on thanks to a special friend and market research from anyone who enters the house. We've created social media profiles on Facebook, Instagram and Twitter and have started posting our achievements over the last month. Cameron has completed two collection days with the support of his support worker and his family and he has started recycling at Containers for Change WA drop off centres. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">We've gone from not having any direction to suddenly having an operating business in less than a month and it's a little overwhelming but Cameron has taken it all in his stride. He loves car rides so driving around the collection route is wonderful for him and he loves meeting people as he collects - he even kissed a baby the first week. He does everything that he can do which is basically carrying bags and boxes to the car. He doesn't have the motor control to empty bins into garbage bags but he waits patiently till he can carry the bag to the car. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgyI7dcUw-vaAybFLQHyLutHgLMjtF3L-bR05jyK4ATzUpkw0HNzpdqhwSG2ZERKaOV2dib2OB13bfqR8I_GjnWu0Bl13KW5N3ht74MnpHuC9qu3LYSi-4211jsCy7ekVu8093wLY6QQQC/s2048/Scheme+ID+2.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1613" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgyI7dcUw-vaAybFLQHyLutHgLMjtF3L-bR05jyK4ATzUpkw0HNzpdqhwSG2ZERKaOV2dib2OB13bfqR8I_GjnWu0Bl13KW5N3ht74MnpHuC9qu3LYSi-4211jsCy7ekVu8093wLY6QQQC/s320/Scheme+ID+2.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Containers for Change WA <br />Cameron Collects - Scheme ID<br />C10382139</td></tr></tbody></table><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">His first drop off to a collection centre was educational as we all realized he didn't like the noise of the machines but loved meeting everybody and could carry his containers to be sorted. We've realized that we need several recycling centres in different locations to be able to manage his containers and that relationships need to be developed so that when he arrives each week the situation can be managed so he can cope. It's a steep learning curve at the moment. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">The whole situation is very exciting and evolving by the day - our next business goal is the logo and then to print shirts, caps and car magnets - so we don't feel like burglars each time we stop at strangers houses. We have been blown away with everyone's generosity and support, total strangers sharing Cameron's social media profiles and collecting containers from their friends, family and neighbours for Cameron. We even had to register Cameron for a Containers for Change WA Scheme ID because people wanted to recycle on his behalf. We are deeply humbled and grateful.</div><div class="separator" style="clear: both; text-align: center;"><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcoUAN0GsIpKsKeMlZTZZnBTA_vY1GpY5Kv5FQgMdxxoKtusKZ_LRTO55BEFEwpZzGNNl4cMqo5izXO8id0IBcV58ymB-kZVe5My59sISFhNrUU4NbO5Y1DxKXqVZpefu9NSZFxHK7sGbh/s2048/IMG_4286+%25283%2529.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1340" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcoUAN0GsIpKsKeMlZTZZnBTA_vY1GpY5Kv5FQgMdxxoKtusKZ_LRTO55BEFEwpZzGNNl4cMqo5izXO8id0IBcV58ymB-kZVe5My59sISFhNrUU4NbO5Y1DxKXqVZpefu9NSZFxHK7sGbh/s320/IMG_4286+%25283%2529.JPG" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron Collects - Ability Not Disability</td></tr></tbody></table><span style="text-align: left;"><br /><div style="text-align: left;">So here's to a new adventure in Cameron's life. A business. A purpose. Lots of work but wonderful outcomes for Cameron, the environment, his community (he is providing a service) and the disability and meningitis community through increased awareness and understanding. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Take a look at Cameron Collects social media profiles to follow along on his journey and if you'd like to become one of his registered collections - you can see the areas and days he is collecting on his social media pages - send me a message or email at cameroncollects@iinet.net.au and we'll pop you on the list. </div></span></div></div></div>Unknownnoreply@blogger.com3Pinjarra WA 6208, Australia-32.6272963 115.8746564-32.656208847805743 115.84032412460938 -32.598383752194252 115.90898867539063tag:blogger.com,1999:blog-1293413140088378218.post-12084472916261807472020-10-30T23:20:00.001+08:002021-01-02T20:13:25.545+08:00Happy 25 Years Cameron<div class="separator" style="clear: both; text-align: center;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNeRPbggjCB5uZfWR2uhjaTlMGFsRGSeRXLr9_AzbuYudxB2N5y0qC5pKQ4Iz7H5yPpQApKFp-n7VG3GsWGsdhppLPltIVrlQLqXFEkRs-Zy5q9ntGU-8s46xRvBqiH_wLkUoobR2jgBay/s252/Cameron+25th+Birthday+%25282%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="238" data-original-width="252" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNeRPbggjCB5uZfWR2uhjaTlMGFsRGSeRXLr9_AzbuYudxB2N5y0qC5pKQ4Iz7H5yPpQApKFp-n7VG3GsWGsdhppLPltIVrlQLqXFEkRs-Zy5q9ntGU-8s46xRvBqiH_wLkUoobR2jgBay/s0/Cameron+25th+Birthday+%25282%2529.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cameron Danzi - 25th Birthday - 2020<br /></td></tr></tbody></table></div><p>Cameron is 25 years old! How did that happen? How am I the mother of a 25 year old? </p><p>It's been 25 years filled with unexpected adventures, challenges, moments of horror and fear, moments of elation and wonder, shock and awe. There has not been enough sleep, too much washing and a lot of tears but the years have also been filled with love, cuddles, perseverance and achievements. </p><p>Cameron is a shining light filled with love and our lives would be extremely dark and sad without him but it's not easy - for him or us. </p><p>One of the challenges our family has faced has been our household maturing. My Little Angel is becoming a young adult and we are now well into our middle years of life. Cameron is maturing too but at the same time he isn't changing. He still loves Playschool and The Wiggles. He still enjoys Duplo and toy cars. He still throws his toys around the room and rips up his books. </p><p>Our lifestyle is very family orientated but it was starting to become extremely draining with Cameron wanting to only watch young children's tv shows and our lounge room being turned into a toy room disaster zone every day. We can't have toys and books in Cameron's bedroom because he finds them very distracting when it comes to bedtime and sleep. We were starting to retreat into our bedrooms to find peace and solitude. </p><p>When we bought our home six years ago we had an idea and this year we made it a reality. We ventured into the world of renovation and we enclosed our alfresco into another room within our home. Our builder did an outstanding job and it was finished a few days before Cameron's birthday. So, this year we gave Cameron a little piece of paradise for his birthday. A room where he can be himself and not annoy anybody. A place where he can make a mess and not feel that he has done something wrong. A room where I can close the door and block the sound of songs I have heard a thousand times and can block the view of a horrendous mess. This is one of the best things we have ever done. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2wV11eMAgORiKLGPKFIz6cKB7adU3_kN8vRoV6VUPhbT8fxyd1Iyr0L5dFpGcTKxwaVS0Pm2jXn2875XI-xvJZGjZ5RczvZ17TukJ-0ToCthUBCsHUEHoHqMOfdnX_KA53Ln3N0zXo_II/s1311/Cameron+in+New+Room.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><img border="0" data-original-height="983" data-original-width="1311" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2wV11eMAgORiKLGPKFIz6cKB7adU3_kN8vRoV6VUPhbT8fxyd1Iyr0L5dFpGcTKxwaVS0Pm2jXn2875XI-xvJZGjZ5RczvZ17TukJ-0ToCthUBCsHUEHoHqMOfdnX_KA53Ln3N0zXo_II/w200-h150/Cameron+in+New+Room.JPG" width="200" /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmiax_03cz0AmSmy9RQMTVSTKvj10h_xrkJDHVEFqwnuypdbmE8YmXbpPeQ73vBn-XrjI4zyodIgNzYpem1LsGg-zRRUJXLDbvbUL-dZehuPVvXaXhkX321-W45Rjk43mUkah0O3GqW8ti/s1311/Cameron+New+Room.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="983" data-original-width="1311" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmiax_03cz0AmSmy9RQMTVSTKvj10h_xrkJDHVEFqwnuypdbmE8YmXbpPeQ73vBn-XrjI4zyodIgNzYpem1LsGg-zRRUJXLDbvbUL-dZehuPVvXaXhkX321-W45Rjk43mUkah0O3GqW8ti/w200-h150/Cameron+New+Room.JPG" width="200" /></a></div><div class="separator" style="clear: both; text-align: center;">Cameron in his New Room</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: justify;"><span style="text-align: left;">Cameron is so happy and we are so much more relaxed and happy as a family. We all pop in and out of the new room and spend time with Cameron. He still moves around the house as he pleases and spends time with us - he's content. He has a special space where we adapt to him and we are able to live more comfortably within our home and not feel bad when we ask Cameron to adapt to our needs. A win win for all.</span></div><p></p><p>So what happens when Cameron is not home - everybody uses the new room - everybody loves the new room. It has the nicest feel and beautiful light. It's a great room for a chat, a great room to watch TV or watch a game of footy. It's a great room to catch up on social media or make a phone call. It is the room with a view of the backyard. Even the dogs have adopted it as their favourite room but when Cameron is home we respect it as his space. </p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1293413140088378218.post-70190604252821273922020-08-17T16:54:00.002+08:002020-08-23T14:33:39.201+08:00What is Normal?<p><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBHVZIz18cdzWiAzrjXgxk0d66FSU4vjAycpyRtPDmB9D6Hsrhi4B8FJ7C9P4UgYiaEIyxE_u_IV2t4N0lmzf8KbxOhAvcFtIw_LPBUKffNFhwM037dOS8rK8nshCRmNZ8fWCGqoXg2tFz/s2048/Cameron+bringing+me+his+washing.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1242" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBHVZIz18cdzWiAzrjXgxk0d66FSU4vjAycpyRtPDmB9D6Hsrhi4B8FJ7C9P4UgYiaEIyxE_u_IV2t4N0lmzf8KbxOhAvcFtIw_LPBUKffNFhwM037dOS8rK8nshCRmNZ8fWCGqoXg2tFz/w387-h640/Cameron+bringing+me+his+washing.jpg" width="387" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Mum - Can you do my washing?</td></tr></tbody></table><p><br />We live an unusual life with Cameron. He is almost 25 years old but we care for him just like a toddler. We watch over him 24 hours a day, taking care of all his needs, thinking for him and providing for him. If we can't physically be there for him then we have to ensure somebody else is. </p><p>Cameron's day to day life is not what you would expect a 24 year olds to be. There is generally no paid work or study, no mates or girlfriends, no date nights or driving, no high jinks or responsibility. So when he does something that is normal it often takes me by surprise. </p><p>This week we have been staying in a hotel while My Little Angel takes part in a dance competition. Cameron has been having a little holiday at the property next door with his support worker. Cameron had some washing and we have a washer and dryer in our accommodation so Cameron brought me his washing. Cameron's never ending washing is just a fact of life at home but in this situation it struck me as funny and normal. Young men will often take their washing home for Mum to do. </p><p>It's strange the things that will strike you as normal and become a moment to treasure such as Cameron going to a wine tasting at a winery. Yep, he did that this week. Cameron wanting to leave our accommodation and get back to his own - he'd had dinner with us and he was done. We saw him a couple of times during his stay and he seemed happy to see us but also happy to get on and do his own thing. That tells me he is maturing and feeling more comfortable in his world without us. </p><p>Cameron's normal life is not the mainstream idea of normal. But what is normal? We all walk to the beat of our own drum and lead our own individual lives within the world that surrounds us. Normal is whatever you make it. Some people like to conform and blend in but I don't think Cameron would have been one of those people. Even within the confines of the life he leads today he makes choices about the way he wants to connect with, and treat, others. He is an individual leading an extraordinary life which doesn't conform to societies idea of normal but it is his normal and we get to live in his normal with him. </p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1293413140088378218.post-55934504125109129432020-08-03T15:04:00.001+08:002020-08-03T15:04:49.092+08:00Our First NDIS Review<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidN9yQ7UzVjH6qVQBL73bnpchBVTGdqOEMFdxjHlZwv9SKxfszUTXVGUL-mfDcUu6kr1XcfTY9MgPoJkBMpo_8Jh-JzW-LzR_ViXWP-AsCvTlsqRj_lEiP89Ddg5Dfj4WrwR_LkkpJljjT/s312/download.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="162" data-original-width="312" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidN9yQ7UzVjH6qVQBL73bnpchBVTGdqOEMFdxjHlZwv9SKxfszUTXVGUL-mfDcUu6kr1XcfTY9MgPoJkBMpo_8Jh-JzW-LzR_ViXWP-AsCvTlsqRj_lEiP89Ddg5Dfj4WrwR_LkkpJljjT/s0/download.png" /></a></div><div><br /></div>Recently we passed another significant day in Cameron's journey, he had his first National Disability Insurance Scheme (NDIS) review. It's been a year since Cameron joined the NDIS and transitioned out of the Western Australian disability support system. <div><br /></div><div>The NDIS is Australia's national system of support for people needing support to live their lives. Through the NDIS you can access funds to purchase therapy, equipment and support. <br /><div><br /></div><div>There have been lots of different reactions to the NDIS - some good and some not so good. We have been one of the lucky families and our first year with the NDIS has been event free. </div><div><br /></div><div>We chose to self manage Cameron's funding and that gave us flexibility to employ support workers directly. This has meant that we have been able to organize Cameron's weeks and activities to suit him and employ the staff who we feel match our needs, Cameron's needs and his personality best.</div><div><br /></div><div>Prior to switching from the now defunct state system to the new national system we spent several years putting in a lot of work to get people to understand the support Cameron needed and at times arguing our case to get increases in his support funding. This hard work paid off last year when we were given equal funding on the national system. </div><div><br /></div><div>It was disheartening last year when the person running Cameron's planning meeting stated that his plan was excessive and would be cut this year. She informed us that Cameron was not unique and she'd met lots of young men just like Cameron and he didn't need the level of support we had fought for. I'd love to meet all these young men she believed she knew because we don't seem to be able to find them. She also believed that we had only received his level of funding because the state body was being excessive with their spending - I was left speechless from that statement. We fought hard for every cent Cameron received and didn't receive everything we asked for. It must be difficult for some people to imagine an adult needing 24 hour, 1 on 1 care and supervision to keep them safe. That is Cameron's reality and I struggle to provide that level of care, 7 days a week, anymore. </div><div><br /></div><div>When you meet Cameron he looks just like you and I. No sign of his challenges. If he attempts to communicate it is obvious that is a problem. If you spend an hour with him you will see how much time we spend keeping him safe and watching over him for his own safety. If you enter our home you will experience the locked doors and arrangements around the home just for him. If you spend a day with us you will learn about the people who help Cameron live his life as meaningfully as possible and how challenging it is for us to fill his days and keep him engaged and potentially developing. Then there is the personal care. </div></div><div><br /></div><div>It's been 3 weeks and we haven't heard yet how Cameron's review has gone. He has been given a funding extension to cover him until his review is processed. That's a positive because we can continue as normal for now but we are waiting with our breath held. A funding cut will have huge ramifications for Cameron, his support staff and myself. The meeting seemed to go well but until the review comes through we have no idea what the outcome will be. We may be worrying needlessly and he may receive the same level of funding or even an increase - wouldn't that be nice. Our fingers are crossed. </div><div><br /></div><div>The silver lining - Cameron has no idea about his funding, his review or the fact that we are all awaiting this potentially life changing decision. Ignorance can be bliss. </div><div><br /></div><div><br /></div>Unknownnoreply@blogger.com16tag:blogger.com,1999:blog-1293413140088378218.post-51587378164587544232020-06-30T02:42:00.000+08:002020-06-30T02:42:21.986+08:00Why is This Year Different ???<div class="separator"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><img height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQhWysN10dllraC84NNV-Fl1Zp4DSIRi-0ViqROJqgaQzkJC3juZ-xA5m04E9U10Ze-5q15pj0tGdCCdKeouNGKjczN4oKF7YStPVuCZcE_EFiH__Iz4G46tx4t7Y4QEMFAFdxOfzRgp5I/w271-h400/?authuser=0" style="margin-left: auto; margin-right: auto;" width="271" /></td></tr><tr><td class="tr-caption" style="text-align: center;">Michael and Jane Danzi<br />Wedding 15th April 1990</td></tr></tbody></table><div style="margin-left: 1em; margin-right: 1em;"> </div></div><div>There have been various times in Cameron's journey when it has become very obvious how different our lives are to those around us - this year is one of those years. </div><div><br /></div><div>April 15th 2020 was My Marvelous Man and my 30th Wedding Anniversary. We were 24 and 25 years old when we got married 30 years ago. Cameron is 24 years old and turns 25 in October. </div><div><br /></div><div>29 years ago we were both living independently from our parents, living amazing adventures of mine site and country town life, friends, red dirt, first properly serious jobs, share houses, bosses making us do things we didn't want to do, learning to juggle our money, buy a house, plan a wedding and the rest of our lives together. 30 years ago we stood in front of our families and friends and declared our love for each other and our devotion to share our lives for better or worse, richer or poorer, in sickness and in health, until death do us part. We were adults making adult decisions for our adult lives. We were independent and free to make our own decisions and live with the consequences of those decisions. Most of those decisions turned out alright.</div><div><br /></div><div>Cameron will never experience any of that. He won't plan a wedding and get married. He wont drive a Ute through the bush on a pub crawl. He won't write job applications or move to the other side of the country away from his family. He won't ponder insurance companies or have long discussions about which bank to apply for a home loan with and which real estate agent is the least dodgy. Nor will he stand in the middle of KMart and argue about who is responsible for purchasing Christmas gifts or writing Christmas cards. The normal things in life that make us adults and give us life experiences to grow from. </div><div><br /></div><div>Cameron won't experience any of that, Cameron can't communicate effectively or even dress or toilet himself independently. He makes no decisions for himself nor is he capable of adulting, although in the eyes of the law he is an adult. He is forever locked in the life of a dependent child. </div><div><br /></div><div>Just like when Cameron was young and we watched all the children around us start school, achieve expected milestones and overtake him in their progress through childhood, once again he is being overtaken. We are surrounded by children blossoming into young adults. Young adults blossoming into independent adults, getting married and even starting families. Following the same journey of discovery and growth we all have followed but each in their own independently unique ways. </div><div><br /></div><div>It's exciting to see everyone grow and find their way in the world. We celebrate each milestone along the way with genuine joy in our hearts but then in the quieter moments the light bulb shines on our reality and I struggle. 30 years ago our lives were an open book of adventures waiting to be written and all I see in Cameron's book is pages and pages with Ground Hog day written at the top. </div><div><br /></div><div>He is a young man, he should be in the prime of his life, excited about the future and what it will bring - career, partner, maybe children, adventures. Not perfection because no life is perfect, if it was it would be boring. You need life's ups and downs to learn and to appreciate, to grown wisdom and gratitude. But Cameron doesn't get to chose any of his life story and I'm struggling with that this year. </div><div><br /></div><div>In no way do these feelings eliminate my feelings of joy and pride. I still think he is a living miracle - he is meant to be here, he's fought so hard to stay. I am in awe of the achievements he has achieved and the struggles he has overcome. I see every day the love, compassion and light that he brings to everyone he meets, he touches peoples hearts and souls. I love him more deeply than I can ever describe and don't regret a single sacrifice, sleepless week or the exhaustion along the way. But sometimes you have to be honest with your feelings and this year is hard. </div><div><br /></div><div>I have to admit, I didn't see this moment of grief coming. Yes, it's grief. I'm grieving what will not be, what was lost and will never occur. I've always know Cameron wouldn't go to University, drive a car, get married, have children, follow a chosen career but there is a difference between predicting the future and catching up to it. </div><div><br /></div><div>It probably hasn't helped that we have stepped away from our usual routines thanks to Covid 19, it's given me more time to ponder and think. It's also given me time to rest and realize how tired I am. It's been a long 24 years, however I look around and see other special needs parents who have been on their journeys for longer than me and I draw strength from their perseverance and survival. Sadly I have lost friends and watched other's health decline from the stresses of their different existence but there is one thing that bonds us all together - Hope. Hope that one day a miracle might happen, hope that a treatment or therapy will be found. Hope that life will improve and our loved one will enjoy the freedoms we enjoy. </div><div><br /></div><div>So, for the time being I will let this moment of grief follow it's course and I will let myself be at peace with what it all means. In the meantime I will search for the possibilities so Cameron's book doesn't read Groundhog Day at the top of each page. </div><div><br /></div><div><br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1293413140088378218.post-8057157261275184072020-04-27T16:08:00.001+08:002020-06-29T21:30:35.494+08:002020 - Coronavirus (Covid 19) <div data-block="true" data-editor="egr7q" data-offset-key="bfm99-0-0" style="background-color: white; color: #1c1e21; font-family: helvetica, arial, sans-serif; font-size: 14px; white-space: pre-wrap;">
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<tr><td class="tr-caption" style="text-align: center;">Cameron <br />
April 2020</td></tr>
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<span data-offset-key="bfm99-0-0" style="font-family: inherit;">What a strange year it has been and we are only up to April. </span></div></div><div data-block="true" data-editor="egr7q" data-offset-key="96t9g-0-0" style="background-color: white; color: #1c1e21; font-family: helvetica, arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="96t9g-0-0" style="direction: ltr; font-family: inherit; position: relative;">
<span data-offset-key="96t9g-0-0" style="font-family: inherit;">2020 started out rather overwhelmingly - not because of Cameron - and life ran away with us. The very week that life finally gave us a chance to take a breath and take stock Covid 19 arrived in Western Australia. </span></div></div><div data-block="true" data-editor="egr7q" data-offset-key="63tuo-0-0" style="background-color: white; color: #1c1e21; font-family: helvetica, arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="63tuo-0-0" style="direction: ltr; font-family: inherit; position: relative;"><br /></div></div><div data-block="true" data-editor="egr7q" data-offset-key="9mmvf-0-0" style="background-color: white; color: #1c1e21; font-family: helvetica, arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="9mmvf-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="9mmvf-0-0" style="font-family: inherit;">We quickly realized that Cameron couldn't socially distance himself or understand the new health and hygiene protocols, which have now become a normal part of our lives, so we chose to isolate our family for everyone's protection. </span></div></div><div data-block="true" data-editor="egr7q" data-offset-key="37e8t-0-0" style="background-color: white; color: #1c1e21; font-family: helvetica, arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="37e8t-0-0" style="direction: ltr; font-family: inherit; position: relative;"><br /></div></div><div data-block="true" data-editor="egr7q" data-offset-key="8mi1-0-0" style="background-color: white; color: #1c1e21; font-family: helvetica, arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="8mi1-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="8mi1-0-0" style="font-family: inherit;">As everyone has found, staying home comes with benefits and challenges. Today Cameron is finding it challenging and we are hearing lots of grumbling, growling and stamping of feet. On other days he's quite happy and content. Considering that he probably doesn't understand why he can't get out and be with everyone he loves I think he has coped remarkable well. Online link ups have been fun although Cameron has been a little perplexed by it all. </span></div></div><div data-block="true" data-editor="egr7q" data-offset-key="4bev4-0-0" style="background-color: white; color: #1c1e21; font-family: helvetica, arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="4bev4-0-0" style="direction: ltr; font-family: inherit; position: relative;"><br /></div></div><div data-block="true" data-editor="egr7q" data-offset-key="atopp-0-0" style="background-color: white; color: #1c1e21; font-family: helvetica, arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="atopp-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="atopp-0-0" style="font-family: inherit;">This is the first time in his life that Cameron's day to day life has stopped. No therapy, no appointments, no visiting, no socializing, no dancing, no bowling, no car trips, no cafe visits, nothing. This has never happened, not even when he was a new born baby before the never ending medical and therapy appointments started. We've never been home. We've never been isolated. In a way this is a dream come true. I'm truly grateful for the rest. </span></div><div class="_1mf _1mj" data-offset-key="atopp-0-0" style="direction: ltr; font-family: inherit; position: relative;">
</div><div class="_1mf _1mj" data-offset-key="atopp-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="atopp-0-0" style="font-family: inherit;">When we decided we had to temporarily stop therapy at the <a href="https://ifn.net.au/" target="_blank">Institute of Functional Neuroscience </a> it was done with a heavy heart. We had maintained nine non stop years of therapy. What would this do to Cameron's brain? Would he regress? </span></div><div class="_1mf _1mj" data-offset-key="atopp-0-0" style="direction: ltr; font-family: inherit; position: relative;">
</div><div class="_1mf _1mj" data-offset-key="atopp-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="atopp-0-0" style="font-family: inherit;">Without the data of a brain scan we can't be sure but from day to day observation it seems that Cameron is doing really well. He has adapted to his new flexible routine. He has adapted to Dad working at home and understands when he is told we need to stay away from rooms so meetings can be heard. He's adapted to Nanna living with us. He's learnt how to lounge on a bed - this is something he had never done. He's learnt how to lean backwards and put his head under the shower water - the look of bliss on his face is beautiful. He has watched lots of movies - another huge challenge for him. He's discovered comedy series like Kath & Kim and The IT Crowd. He's watched The Wiggles way too much. He's rediscovered toys and playdough, swinging and wandering around the yard. He even vacuumed - although he thinks one straight line through a room is sufficient. </span></div><div class="_1mf _1mj" data-offset-key="atopp-0-0" style="direction: ltr; font-family: inherit; position: relative;"><br /></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD5fvgiZ4EvKHX83WD5z8JlYwPonsQ2DmkC313-fYvJOmCS-ARLwHGpLEP2X6Ro0XgR5YnMuBWWEMf2vFU5JnVTV1Xnzcp10knECo76W4O8x6lh6ws2hEGYC6VYzR7ElpGZG4H-QzHYlPa/s1600/Cameron+Vacuuming+April+2020+%25283%2529.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1083" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD5fvgiZ4EvKHX83WD5z8JlYwPonsQ2DmkC313-fYvJOmCS-ARLwHGpLEP2X6Ro0XgR5YnMuBWWEMf2vFU5JnVTV1Xnzcp10knECo76W4O8x6lh6ws2hEGYC6VYzR7ElpGZG4H-QzHYlPa/s320/Cameron+Vacuuming+April+2020+%25283%2529.JPG" width="216" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron Vacuuming <br />
April 2020</td></tr>
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I did think it was ironic that I finally got all my diaries sorted and set up for the year the week we had to cancel every plan we had. The next week Cameron discovered my white board pens and scribbled all over my year planner and normally I would have been rather angry - it had taken me hours to organize. Instead I just laughed because he was right - the year is a mess and nothing is where it should be anymore. I redirected Cameron's artistic abilities and he was very proud of his creations.
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiII9r-bW26IXeWaapKsx0_4SerQbvr1IZdYjreBLirookegeid6aP1EmC7JOqRw53GCcWMMQp-6IH1JGt02k-CmqHL1PYx3W9T8d_S2ODPeICQi3P_lZpQpHuchydFf8plaIHeHK13ME9Y/s1600/Cameron+Drawings+March+2020.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiII9r-bW26IXeWaapKsx0_4SerQbvr1IZdYjreBLirookegeid6aP1EmC7JOqRw53GCcWMMQp-6IH1JGt02k-CmqHL1PYx3W9T8d_S2ODPeICQi3P_lZpQpHuchydFf8plaIHeHK13ME9Y/s320/Cameron+Drawings+March+2020.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron showing off his art work <br />
March 2020</td></tr>
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<span data-offset-key="atopp-0-0" style="font-family: inherit;">We feel blessed to be living in a region that is isolated and safer than other highly populated areas around the world. We feel sad for all the families grieving for their deceased family members and extremely grateful for all medical staff, support staff and cleaners caring for everyone affected by Covid 19 around the world. We're also extremely grateful for all the emergency services, cleaners, supermarket employees and government employees working to keep us all safe and healthy. Thank you. </span></div><div class="_1mf _1mj" data-offset-key="atopp-0-0" style="direction: ltr; font-family: inherit; position: relative;">
</div><div class="_1mf _1mj" data-offset-key="atopp-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="atopp-0-0" style="font-family: inherit;">So we will continue to stay home and Cameron will continue to watch way too much Wiggles mixed up with new viewing discoveries each time he discovers the TV remotes new hiding place. He will walk and spin, swing and bang, lounge and observe, be Helpfully Unhelpful and discover new things.</span></div><div class="_1mf _1mj" data-offset-key="atopp-0-0" style="direction: ltr; font-family: inherit; position: relative;">
</div><div class="_1mf _1mj" data-offset-key="atopp-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="atopp-0-0" style="font-family: inherit;">Wherever you are around our beautiful planet please isolate if needed, wash your hands and socially distance. Cameron sends you all a big hug and hopes you all Stay Safe. </span></div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1293413140088378218.post-73057159414958703982020-01-03T20:47:00.000+08:002020-01-03T23:18:52.094+08:002020 A New Year and New Adventures <div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs_hNLOwOtsyC_R-2jT7_r1_8pkLVnbqcllocOE9YQwsH4jX9wjAaEag_ggc_v9R0xNG01y5fyDoiGsMQdpkAcOc4Rc08leBuqCTdpIlLhMD4tPym33XVXphs_VGtqVeUGN5xsCE1ipJ4e/s1600/IMG_1675+%2528Edited%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1250" data-original-width="1600" height="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs_hNLOwOtsyC_R-2jT7_r1_8pkLVnbqcllocOE9YQwsH4jX9wjAaEag_ggc_v9R0xNG01y5fyDoiGsMQdpkAcOc4Rc08leBuqCTdpIlLhMD4tPym33XVXphs_VGtqVeUGN5xsCE1ipJ4e/s320/IMG_1675+%2528Edited%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron and Rocco<br />2019</td></tr>
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It's been a while I know but the writing bug has bitten me so I'm not letting it pass me by. </div>
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Hopefully I can remember how Blogger works - it's been a while. </div>
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It's January 2020 and Cameron is 24 years old. I'm still struggling with that fact - he is the same age I was when I got married. His life is so different to mine and at each stage it makes me stop and feel so sad for him and all that he is missing out on. Part of me hopes he doesn't realize or understand how different his life is to his peers and another part of me wants him to be aware and be striving to break out from his trapped mind - I think his reality is a bit of both. These thoughts tug at my heart daily and I still shed tears regularly during private moments. </div>
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<b>So what's happened since April 2018? Quite a lot but also a lot of the same. </b></div>
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Cameron is still attending The Institute of Functional Neuroscience. It's been 9 years now and he is still improving although at a snails pace. When I meet new IFN families and describe what Cameron used to be like you can see that they struggle to imagine that the Cameron they see before them was the zoned out, disconnected Cameron I am describing. They can't imagine him with epilepsy and losing abilities as fast as he developed them.<br />
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We've had a lot of trials and changes at the IFN after he was accepted as a research participant. At one stage he was doing 6 treatment sessions a week (I think we even did 9 sessions a week for a while) and a scan each week, so we were starting a new plan every week. Currently he does 4 therapy sessions each week with a scan and a new plan every fortnight. His brain changes significantly with 8 sessions and he keeps proving that his brain is like no other. Report day is often filled with highs and lows and we ponder over his brain scan pictures and future treatment plans. We're not giving up on him.<br />
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<a href="https://ifn.net.au/" target="_blank">Institute of Functional Neuroscience</a></div>
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<tr><td class="tr-caption" style="text-align: center;">Cameron<br />October 2019</td></tr>
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<br />Cameron's support funding switched from state to federal funding and he is now funded through the NDIS. (National Disability Insurance Scheme) If you know anything about the NDIS you will know that it is a new Australian initiative that is a blessing for some and a curse for others. Thankfully Cameron's funding was transferred across without any cuts (we were one of the lucky ones) but now there is a growing sense of apprehension for his first review. Many people have had their funding cut significantly at their first review so we will need to go into the process fully prepared to prove our case and fight if necessary. Some people have had to take their fights into the law courts - I am hoping we will not be one of them. But it did not fill me with hope when the NDIS planner, after sitting in a room with us for half an hour, informed us that there are lots of young men just like Cameron who don't get this level of funding, so don't expect the same level of funding next year. I'd love to meet all these young men just like Cameron, they must have been in hiding for the past 24 years.<br />
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To lose funding that we have fought so hard to receive would be devastating. We have staff who rely on us for their income and more importantly Cameron now has a level of independence and freedom that would be devastating to lose. So the advocacy for Cameron's right to live 'As Good a Life as Possible' continues.<br />
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<a href="https://www.ndis.gov.au/" target="_blank">National Disability Insurance Scheme</a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiq5D_Lt-YQgnziXDROfrFPNBF_q5ozgHg5FfH6ryp4U70sun1XulicR_qJgAe73FP7lKeAKsLu8UclkCSIm286P_wg5CKPsfN8a6ONKBPo2Bsu-FFRgIutn6m7ylIJR1udKOMUBEUu-7K/s1600/IMG_1262+%2528Edited%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiq5D_Lt-YQgnziXDROfrFPNBF_q5ozgHg5FfH6ryp4U70sun1XulicR_qJgAe73FP7lKeAKsLu8UclkCSIm286P_wg5CKPsfN8a6ONKBPo2Bsu-FFRgIutn6m7ylIJR1udKOMUBEUu-7K/s320/IMG_1262+%2528Edited%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron helping Dad to organize his funding paperwork</td></tr>
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Cameron had an accident in September which was scary. He took the impact of the accident with his face at speed after flying over a fence. He was a bit of a mess but coped very well. It was Cameron's first visit to emergency in 8 years and his first time as an adult which was a tad scary but I am full of praise for the staff who looked after him. His recovery was slow but steady. He was left with some scars to remind him of his adventure and thankfully there was no sign of a seizure.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxgtv4xzmswcFdgpCwC2-yrqzvTOZ6J2XgPdk2dyU-QSZJKf6CE4nEnwlGUjcIHKT6H3L46Qr3AMEsHhPoIcSMCrEWyQwi_3x80dsBe_F-PlR-ghSDFBlanUHbc-lxH59AlvoNQIcm0ZZd/s1600/IMG_1307.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="832" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxgtv4xzmswcFdgpCwC2-yrqzvTOZ6J2XgPdk2dyU-QSZJKf6CE4nEnwlGUjcIHKT6H3L46Qr3AMEsHhPoIcSMCrEWyQwi_3x80dsBe_F-PlR-ghSDFBlanUHbc-lxH59AlvoNQIcm0ZZd/s320/IMG_1307.JPG" width="166" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron after the accident<br />September 2019</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0h7JTmNqcIP1Ig6FZQ-SJpMA4cIzf2uX_YWEjRB-QbtYE8HH6CSEcpCxaCEw6rtUnONZ41NdPZMifEYTPgQtarrZ1teWI_tVq7efyrg5HeLXRFnEKbuzolWxehYjXZjrO_blg6KR6vgmw/s1600/IMG_1309+%2528Edited%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0h7JTmNqcIP1Ig6FZQ-SJpMA4cIzf2uX_YWEjRB-QbtYE8HH6CSEcpCxaCEw6rtUnONZ41NdPZMifEYTPgQtarrZ1teWI_tVq7efyrg5HeLXRFnEKbuzolWxehYjXZjrO_blg6KR6vgmw/s320/IMG_1309+%2528Edited%2529.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron in emergency<br />September 2019</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJAjNwDpVDgqfqa5SFvqOEnZk92hPzuhZyDElL7YlHzO526Mdg_tyxmfuHDOfHmWpB6IwmbcvoOzLijQYF4LGzI8FxvGRPLJCjhk94dGbYzcItfOqGpgJg5DSkYolLfu_FLhm9OEXJcRGM/s1600/IMG_1313+%2528Edited%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJAjNwDpVDgqfqa5SFvqOEnZk92hPzuhZyDElL7YlHzO526Mdg_tyxmfuHDOfHmWpB6IwmbcvoOzLijQYF4LGzI8FxvGRPLJCjhk94dGbYzcItfOqGpgJg5DSkYolLfu_FLhm9OEXJcRGM/s320/IMG_1313+%2528Edited%2529.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron the day after the accident<br />September 2019</td></tr>
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<i>We thought the day after photo was funny but the truth is, he wasn't left unsupervised, the person with him during the accident is his angel and did everything possible to protect him - to her own detriment. We will be forever grateful for her bravery. </i></div>
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After Cameron's accident his brain suffered a concussion and lost a lot of it's improvements. It was a little shocking and sad but he has slowly improved and we are getting back to where we were. However, of course, Cameron had to be a little different and of course the impact also made improvements. A month or so after the accident Cameron suddenly developed fear and comprehension of danger and scary situations. This is a great development but it had a negative impact to his life - he developed a fear of horses.<br />
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As you all know Cameron has been riding horses and then carriage driving since he was two and a half years old. He's always had a healthy respect for horses teeth and hooves but he loves horse riding and carriage driving. It was quite a shock to realize how scared he was. We have had to change riding centres to break any association Cameron had developed and created a new support crew to help him overcome his fear. It's going to be a slow process but we are hoping we can over come his fear and redevelop his love of horse riding and carriage driving.<br />
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<a href="https://www.horsepower.org.au/" target="_blank">HorsePower Australia</a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDWFJraV6to_srqqzO8bEtFvbw9VwI0fwVi4Tb2bk2MzJVaY6nv_eNoAHvHUXI8kYQt2Bwiaw5Yfb-pNk3mHSMcH7cJeskwh_xGHULEbqdxRX7BqjX_-3AhGB7fZDrXnuIMCBGi0ENQn22/s1600/IMG_1509+%2528Edited%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDWFJraV6to_srqqzO8bEtFvbw9VwI0fwVi4Tb2bk2MzJVaY6nv_eNoAHvHUXI8kYQt2Bwiaw5Yfb-pNk3mHSMcH7cJeskwh_xGHULEbqdxRX7BqjX_-3AhGB7fZDrXnuIMCBGi0ENQn22/s320/IMG_1509+%2528Edited%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron at HorsePower Australia<br />September 2019</td></tr>
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<b>What else has happened?</b> </div>
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For the first time, this Christmas, Cameron woke up first and totally understood what was happening.</div>
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<tr><td class="tr-caption" style="text-align: center;">Cameron<br />Christmas 2019</td></tr>
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Cameron had a fabulous time at Night at the Races 2019. He had such a great night and wasn't thrilled to see me the one and only time we crossed paths. </div>
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<a href="https://www.facebook.com/NATRgaladinner/" target="_blank">Night at the Races </a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil4Wl90FkHU9EG1TlB1mnDWI5XUpFoJ8_G_GtF7_9e0KLRgG-c8-VfNrR9q-pfyani-dpojvi7FcGzsZHcOSUfbAZ9aJ3kudUP9aFd7rswJN01BW2ktfn7y5zCRv3OnlLchr4sSsHZaHGR/s1600/IMG_1047+%2528Edited%2529.PNG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="911" data-original-width="612" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil4Wl90FkHU9EG1TlB1mnDWI5XUpFoJ8_G_GtF7_9e0KLRgG-c8-VfNrR9q-pfyani-dpojvi7FcGzsZHcOSUfbAZ9aJ3kudUP9aFd7rswJN01BW2ktfn7y5zCRv3OnlLchr4sSsHZaHGR/s320/IMG_1047+%2528Edited%2529.PNG" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron at HorsePower Australia<br />Night at the Races 2019</td></tr>
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Cameron loves celebrating his birthday and this year he blew out his candles by himself. I actually had to hold him back so we could get a photo before he blew out the candles.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE5YC0LMd3aDQKV1AFv_NmabcybzEJPd3FKM6KsefQnAZIiDjIA5pCax7obqAX-GdiuhKPNHDQg7u7ry8M7LYApk8389XqUVZ5DpgxkdaIV-mMn3TEO3vt8CqfGxcrWlqXCiix9OkP_jh5/s1600/IMG_0855+%2528Edited%2529.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE5YC0LMd3aDQKV1AFv_NmabcybzEJPd3FKM6KsefQnAZIiDjIA5pCax7obqAX-GdiuhKPNHDQg7u7ry8M7LYApk8389XqUVZ5DpgxkdaIV-mMn3TEO3vt8CqfGxcrWlqXCiix9OkP_jh5/s320/IMG_0855+%2528Edited%2529.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron's 24th Birthday<br />October 2019</td></tr>
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Pav, Cameron's cat, almost died but thankfully she survived and is back to her old fabulous self. Thankfully Cameron left her alone to heal without his help. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2kOpEIVNtasaMh5K3emkicTD-j_l8CwZ5H5rDGK6JE08LLr7PQR82E6YwYY2G3T5a-2uqnX1ndqhGZX7MVIuXujSeXq1RIGkETQi8CJZb5kdOvw62dHymJRr8k8gFeKjEIhNuj_CYSFxf/s1600/IMG_1888+%2528Edited%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2kOpEIVNtasaMh5K3emkicTD-j_l8CwZ5H5rDGK6JE08LLr7PQR82E6YwYY2G3T5a-2uqnX1ndqhGZX7MVIuXujSeXq1RIGkETQi8CJZb5kdOvw62dHymJRr8k8gFeKjEIhNuj_CYSFxf/s320/IMG_1888+%2528Edited%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pav <br />November 2019</td></tr>
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On the same day as Cameron's accident we adopted a new dog into our family called Lucy. </div>
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(Timing is everything.) </div>
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Lucy immediately knew that Cameron was sad and wanted to comfort him. </div>
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Cameron still has his dog Rocco. Rocco and Lucy have joined forces as the trouble makers in our household. Their new found friendship is beautiful and entertains Cameron. </div>
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<tr><td class="tr-caption" style="text-align: center;">Lucy comforting Cameron after his accident<br />September 2019</td></tr>
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For the first time Cameron joined in with Halloween and thought it was great. He did eat a few more of the lollies in the bowl than I realized but he had fun. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghUQIV8imfc7Lxl945qLj_It9kwudDS7psuJwBDplFvbIkgzPnKzlOB_tCKukCHTl98QR-uoW8vuAdZFUkOI3v2HRFSoPT7eEmcH4JXs-ifvIZDQNZ2MJ1jyFrS2uS8RANIA92c0LumOZp/s1600/IMG_1826.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghUQIV8imfc7Lxl945qLj_It9kwudDS7psuJwBDplFvbIkgzPnKzlOB_tCKukCHTl98QR-uoW8vuAdZFUkOI3v2HRFSoPT7eEmcH4JXs-ifvIZDQNZ2MJ1jyFrS2uS8RANIA92c0LumOZp/s320/IMG_1826.JPG" width="320" /></a></div>
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There has been so much more and if you follow Cameron's facebook page - <a href="https://www.facebook.com/This.is.No.Ordinary.Kid/" target="_blank">This is No Ordinary Kid</a> - you will have kept up with our lives but this is a good snap shot of the past year. </div>
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As you can see below My Little Angel is now taller than me and has big plans for 2020 which is exciting and scary all at the same time. My Marvellous Man is still marvellous and me? </div>
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Well, I wrote a book but I'll save that for another post. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRiSX2faFG7TuaypGVNArdwpfmjoCHPOG8j7oGXAubFkjsackscQ_zSnU76a7msXGBJoMWO_bJvYk6hc50jLE5OozE5omCYT6PYpuP2WPikUlg7CtN4tvJWS4-lOL0_IHTJTmYrLFgKSM1/s1600/IMG_0819.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRiSX2faFG7TuaypGVNArdwpfmjoCHPOG8j7oGXAubFkjsackscQ_zSnU76a7msXGBJoMWO_bJvYk6hc50jLE5OozE5omCYT6PYpuP2WPikUlg7CtN4tvJWS4-lOL0_IHTJTmYrLFgKSM1/s320/IMG_0819.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Danzi's<br />Cameron, Jane, Zoe, Michael<br />September 2019<br /></td></tr>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1293413140088378218.post-92193664228146906362018-05-27T23:13:00.000+08:002018-05-27T23:13:13.436+08:00Time for a Funding Update <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6TpxDkY-jjxHgsEtc_0pPGdTMSLGOZQtoXw-yprovNQqcAqBC6qmrdkEAF24TUP9JM4S0B-D1lq0X892BqoU3LVMgZUGf4_LkoWXKzRfarrFZrUIi8yuGk8Q0yV9lug8Yi1d0U1o_ghtK/s1600/Cameron+April+2018.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6TpxDkY-jjxHgsEtc_0pPGdTMSLGOZQtoXw-yprovNQqcAqBC6qmrdkEAF24TUP9JM4S0B-D1lq0X892BqoU3LVMgZUGf4_LkoWXKzRfarrFZrUIi8yuGk8Q0yV9lug8Yi1d0U1o_ghtK/s320/Cameron+April+2018.JPG" width="240" /></a></td></tr>
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Cameron April 2018</div>
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Time for a funding update I think. A lot has been happening that I haven't spoken about because it's been so overwhelming and emotionally draining.<br />
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Australia is in the process of transferring into a new federal funding scheme, for people living with disabilities aged 0-65, called the NDIS. (National Disability Insurance Scheme) We live in Western Australia and our state was the last state to sign up to this new scheme and in doing so relinquished direct responsibility for funding and service provision to everyone living in our state with disabilities. The uncertainty, distrust and fear that has built up about the NDIS is enormous. You read horrible stories of people becoming suicidal over the cuts and major negative impacts the NDIS has had on their lives and then you read happy stories about how people who have never had funding now have a new lease on life and are able to leave their homes and integrate into their communities.<br />
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Our local community does not transition into the NDIS until after July but NDIS has been impacting our lives for several years now. The state trialled the federal (NDIS) and a new state system (WANDIS) side by side, whilst still maintaining their old funding system as well, to see which would be best. Every other day, in all three systems, funding priorities were changed, rules and protocols were changed and what one person said was happening another person said it wasn't. It has been so confusing and the disability community became so divided over which funding system was the best. But ultimately it was the state governments decision and they decided to join the federal system.<br />
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As the transition date draws closer and closer my anxiety is growing greater and greater. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">A couple of months ago Cameron's support funding was reviewed and a new plan put in place, still under the state system. For once I stood up and didn't accept what we were offered, instead I argued our case for what Cameron needed. Cameron needed more funding for support workers to look after his needs and take him out of his home and away from his Mum. He was clearly letting us know that he didn't want to sit around home with me, bored and he didn't want me taking care of his personal needs. Fair enough, he is 22 years old and he needs his independence, as much as it is possible. </span><br />
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><br /></span>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">With support from our wonderful LAC (Local Area Co-ordinator - a government employee), who had taken the time to get to know Cameron and our family, we sat down and figured out what Cameron's life should look like at this stage and we put together a plan with his best interests at the centre of it. The process took weeks as our plan was rejected and rewritten and arguments were made, presented and argued against but eventually we came out of the process with a pretty good outcome. </span><br />
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Cameron received a significant increase in funding and thus support to increase his independence, which means a huge improvement in his quality of life. We now have support workers coming into our home 6 days a week and Cameron is able to spend time with a Host Family once a fortnight to be completely independent from his family. We could have arranged our funding to have support 7 days a week but we have chosen to keep one day support free so I can take Cameron to therapy and to visit some of his grandparents. It's important that he maintains his family contacts and of course visits Lucy and the girls at Dolce Lucia's for morning tea each Tuesday.<br />
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We have been able to employ a third support worker which means there is now greater possibility that when one of our support workers is on leave or ill there will be another available to cover shifts. This will make a huge difference to our lives.<br />
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When dealing with funding for Cameron's needs we are never allowed to talk about our needs as a family or my needs as the main carer. It is all about Cameron and his needs. This adds enormous stress during the planning and review process because you have to be careful with how you word everything. When doing a review you need to recall every positive that has been achieved through the previous plan but when doing the plan you need to recall every negative that requires support and funding. It's an emotional roller coaster. It's draining and this time it was scary.<br />
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I was hearing of families having their funding slashed. Not cut, slashed. I was terrified this was going to happen to us because although we were receiving more than others it wasn't anywhere near enough to meet Cameron's needs because he has such high support needs. He needs constant one on one supervision and he needs assistance with everything in his life. Employing support workers is not cheap and when you have someone with such high needs you need to pay your support workers a decent wage or, fairly so, they will leave and find easier or better paid support roles. Every review/plan I have asked for higher rates of funding so I can pay my staff better. I slowly pushed the hourly rate up and this time we received a much better pay rate. I am much happier with their hourly rate, although for what they do I think they should get more.<br />
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You may have noticed I used the word staff. Yep, I am running a small business with 3 employees and I am the unpaid admin and bookkeeper. Hubby is the unpaid payroll clerk. This is serious stuff with superannuation, insurance and tax to deal with. We have shifts and timetables, time sheets and government paperwork to juggle, staff morale and support that needs to be taken care of. On top of that, our staff are in our home, they become an extension of our family unit, it is an intimate work environment. On the positive side there are cups of tea and chats, on the negative side I can't slop around in my pyjamas and have a PJ day, I'm constantly watching the clock and constantly aware of times that people are arriving and leaving. You lose a certain level of privacy and control over your life. You can't stay and have that extra cuppa or pop into that other shop you wanted to visit, you can't head off as early as you want because it's not time for the support worker to arrive yet or Cam and his support worker will be home and you have to be there. You're life is not your own.<br />
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Don't misunderstand me, we are eternally grateful for the support we are receiving but the reality is that everything comes at a cost. The reality hit home the day I realized that at my age my parents were free of day to day parenting responsibilities, their children had flown from the nest, their days were theirs to do with as they pleased. I have no end in sight.<br />
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It's coming up to the end of May so there is really only one month until NDIS starts to roll out in my community and I am having nightmares and losing sleep with the stress of the unknown. Will we be able to convey Cameron's needs to a complete stranger who will meet a charming young man who will sit politely in a meeting and not interrupt? Will we be able to convince them of the high levels of support that he needs as he smiles sweetly at them and probably hugs them? Will our funding be slashed like some many before us because the person interviewing doesn't perceive our support requests to be reasonable or necessary? (Reasonable or necessary is the catch phrase used when NDIS decide if funding is allocated or not.) Will we be able to keep our three staff and if we have to cut their hours will they stay with us or be forced to look for other work and leave? Will I cope with the added administration and book keeping required of yet another new system? Will Cameron every be able to live independently of us and when will all this uncertainty and fear stop?<br />
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I am a naturally positive thinking person, I always see the silver lining in situations but this transition is proving to be a mental challenge as we face the unknown. I'm hoping we will be at the bottom of the transfer list but at the same time the longer it takes the greater the anxiety will become. Mind you, if I never post that transfer permission letter, we will never appear on the list at all.<br />
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However, despite all of that I will not give up on my dream of Cameron living independently in his own home in our backyard with round the clock care and a meaningful life. And part of that dream might include the business idea I have come up with for Cameron but that is for another blog post, for another day.Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-1293413140088378218.post-84088188529012855932018-05-09T23:56:00.001+08:002018-05-09T23:56:38.274+08:00Night at the Races 2018<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfB0nquy0q8KxWN79aFhvByMO7q9xEI7CZSHDAdMC8ZfZpGYX5Eh77Okrfm38tTIsqnwl9vCZbnGh4Z0JtOwhkIns4NiHtJDmFJqAT88B839JLEsFdA55gQZip9JE0dAf9rNF54P0tjraG/s1600/NatR+.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="901" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfB0nquy0q8KxWN79aFhvByMO7q9xEI7CZSHDAdMC8ZfZpGYX5Eh77Okrfm38tTIsqnwl9vCZbnGh4Z0JtOwhkIns4NiHtJDmFJqAT88B839JLEsFdA55gQZip9JE0dAf9rNF54P0tjraG/s400/NatR+.jpg" width="400" /></a></td></tr>
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Riding for the Disabled WA </div>
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Night at the Races</div>
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2018</div>
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For those of you who have followed us for a while, you will know how passionate I am about Riding for the Disabled - horse riding for people with disabilities. </div>
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Cameron has been with RDA for 20 years and over those years I have sat on the sidelines, been on Centre committees, been President of two centres, been on the State Council, been on the State Executive Committee in a variety of roles and currently I am the State Grievance Officer and the Co-Organiser of RDAWA's major fundraiser - Night at the Races. (Yes I know, I said I stopped - well it turns out I only took a hiatus - She, who knows who she is, roped me back in) </div>
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I know how much Cameron's story and achievements touch peoples hearts because people write to me and tell me, stop me in the street and at appointments and tell me. We are truly thankful for all the positive energy you send Cameron's way and the uplifting comments you leave on this blog. it touches our hearts, lifts us up when we get down and lets us know that we are not doing this alone. </div>
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A thought occurred to me this evening - I wonder if all your wonderful combined energy might be able to help RDAWA and our endeavours with Night at the Races. </div>
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On Saturday 23rd June at 6.30pm we need to fill the Hyatt Ballroom in Perth, Western Australia, with people who want to have a fun night of sweepstakes, horse races, silent, live and ballot auctions, an inspirational guest speaker, an entertaining MC, yummy food, free drinks and lots of fun and games as we all come together to raise money for RDAWA to continue to change disabled children and adults lives, just the way RDA changed Cameron's life. </div>
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We need Sponsors, we need Donations, we need Guests and we need People to help us spread the word and help us promote this truly unique fundraising event on the Perth social calendar. </div>
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There is an Event page on Facebook for <a href="https://www.facebook.com/events/175738386406055/" target="_blank">Night at the Races Gala Dinner</a> and a page on the RDAWA website - <a data-ft="{"tn":"-U"}" data-lynx-mode="origin" data-lynx-uri="https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.rdawa.org.au%2F&h=ATOov3lJ35yqz0jquXHygSnWp59n16-B21g8VXGdRReVk3FMyKBDrirmNuGYVDe54IkQhgHKtOF2FKpZy_0BFh6SEwgdr4Pn7n55Ij6Ittj2PfcMwjrfGpX_hGhaIFO1b8PlUl87" href="http://www.rdawa.org.au/" rel="nofollow" style="color: #365899; cursor: pointer; font-family: Helvetica,Arial,sans-serif; text-decoration: none;" target="_blank">www.rdawa.org.au</a> (click News and Events) both of those pages can link you to StickyTickets where tickets can be purchased. If you can attend that would be wonderful, if you can tell your family, friends and work colleagues (organize a table) that would be amazing but if that is not possible, that is alright. It would be equally fabulous if you could promote the Night at the Races event page through your Facebook personal page and any other pages or groups you are a member of on Facebook. If you are on other social media platforms and feel comfortable promoting it there to, that would also be wonderful. RDA is not generally known in the community and we need to change that. </div>
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If you, a business or anybody you know might be interested in sponsoring Night at the Races I can forward you a Sponsorship Menu and if you would like to make a donation (financial, voucher or goods of any nature) please let me know. </div>
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Night at the Races is at the end of the financial year. Any financial donations are tax deductible and you will enter the New Financial Year knowing that you have contributed to changing some truly deserving people's lives. Any donations over $5000 will be acknowledged with two free tickets to Night at the Races along with other ways to acknowledge the generous donation.</div>
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If you attend Night at the Races please stop me as I fly past and say Hi and if you look around the room you will see a few familiar faces - My Head Bookie is My Marvellous Man and My Little Angel is a Night at the Races volunteer - she's not so little anymore but she's still my angel. Cameron you will spot enjoying the evening with one of his Support Workers. </div>
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It is handy when you are an organizer. If you would like to sit with Cameron please let me know and we will organize a table of Cameron and his wonderful supporters and friends. (It will be first in first served) If you organize a table we can put your table next to his.</div>
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Thank you for whatever you can do to help us raise awareness of RDA and funds for RDAWA. I know that if Cameron could he would say Thank You straight after he gave you one of his enormous, gorgeous smiles and an equally enormous hug.</div>
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1293413140088378218.post-10800009091985080302018-04-23T10:38:00.002+08:002020-07-01T14:32:30.805+08:002018 World Meningitis Day<div style="text-align: center;">
<b>It's that time of the year again - World Meningitis Day</b></div>
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<b>24th April</b></div>
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<b>Cameron 5 1/2 months</b></div>
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PMH ICU fighting for his life</div>
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April 1996 </div>
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An April has not gone by for the last 22 years without our family stopping to pause and remember the worst day of our lives.<br />
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The 2nd April 1996 was the day Cameron developed Pneumococcal Meningitis and all of our lives were changed forever. Cameron fought for his life for 10 days in ICU, then spent 3 months in hospital and even after we moved out of ICU the medical staff didn't expect Cameron to survive. This disease isn't a walk in the park, it's a serious fight for life. <br />
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Meningitis is confusing for everyone. There are many different strains and many different signs and symptoms along with different outcomes and after effects. Then there are the vaccinations which cover different strains of Meningitis. People unfortunately think that if they have one vaccination they are safe from Meningitis but the reality is, they have only protected themselves against one strain of Meningitis. <br />
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Cameron had Pneumococcal Meningitis but due to media coverage a lot of people are only aware of Meningococcal Meningitis. If diagnosed quickly people can recover from Meningitis but if not people can die within hours. However, having survived this deadly disease you are then faced with potential after effects.<br />
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Meningitis can be hard to diagnose. Cameron was misdiagnosed because his symptoms were similar to a crotchety teething baby and then appeared to be a bowel infection. Meningococcal Meningitis often has a rash that appears but not always and once a rash does appear, the race has started to save a life as the body starts to die.<br />
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Over the years I have heard many stories of misdiagnosis and of parents following their intuition and repeatedly visiting doctors surgeries and emergency departments until somebody saw what they saw, that their child or family member were dangerously ill. Sometimes by the time diagnosis happened it was too late.<br />
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I know this isn't an upbeat or happy blog post but Meningitis is not a happy or upbeat disease. It's grim, it's scary, it's terrifying and it's deadly. If you're lucky enough to survive then you most likely have life changing after effects. You could possibly have learning difficulties, deafness, epilepsy, loss of body parts, severe brain damage, amongst many others.<br />
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Cameron was one of the lucky ones, he survived, but the man he was destined to be disappeared that day. A normal childhood was taken away and any future love interests, marriage and children were wiped from history. Grandparents grieved, aunts, uncles, friends and acquaintances grieved but nobody more than us, his parents. Meningitis doesn't just affect the person lying in the bed, it affects everybody in their lives, and everybody grieves the future life lost.<br />
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There was no vaccine for Pnuemococcal Meningitis when Cameron was a baby, his fight with Meningitis was unavoidable. I wish history had been different and medical science had been more advanced.<br />
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If you only take one thing away from World Meningitis Day this year then please let it be this - don't let a family member die from Meningitis. This is a vaccine preventable disease - please vaccinate. <br />
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This World Meningitis Day please help to start the conversation, spread awareness of vaccination and just as importantly awareness of the signs and symptoms of Meningitis. Help us save lives. <br />
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To learn the<b> Signs and Symptoms</b> of Meningitis and about the <b>Vaccines</b> available please visit:<br />
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<b>Meningitis Centre Australia</b> - <a href="https://meningitis.com.au/" target="_blank">meningitis.com.au</a></div>
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<b>CoMO</b> - <a href="http://www.comomeningitis.org/" target="_blank">www.comomeningitis.org</a></div>
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To help spread awareness please join the <b>Thunderclap</b> </div>
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<a href="http://www.thunderclap.it/projects/69193-world-meningitis-day-24-april" target="_blank"> www.thunderclap.it/projects/69193-world-meningitis-day-24-april</a></div>
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1293413140088378218.post-69765885458150426802017-04-28T22:36:00.001+08:002017-04-28T22:36:34.899+08:00What About Therapy? <div class="separator" style="clear: both; text-align: center;">
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Cameron 8 months old with his first Physiotherapist</div>
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He was placed in this position and could only hold it for a few seconds before collapsing</div>
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We have recently gone through a funding process with Cameron and it's been very confronting and depressing. Amongst all the questions we were asked was one that we were repeatedly asked -<br />
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<b>What about therapy?</b> </div>
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Cameron no longer accesses mainstream therapy - occupational therapy, physiotherapy or speech therapy. This is being strongly questioned and it is being inferred that we are not doing the right thing by Cameron by not accessing these therapies. This has made me question myself and my parenting decisions, as well as made me incredibly angry and hurt. <br />
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Cameron developed Pneumococcal Meningitis at 5 months of age. At that point Cameron was developing normally. He could suck and eat pureed solids. He could sit up with support and stand with support. His grasp was developing nicely, he'd learnt to rip paper and hold toys. He was babbling and laughing and could express his emotions. He was very sociable and liked to watch the world and interact with it in a tactile/sensory way. <br />
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When Cameron woke from his coma he had less abilities than a new born, He had no muscle control. He appeared to be unable to see or hear. He could no longer suck. He was limp and the only way he expressed himself was through crying and it was a pained cry. If you have ever been around brain damaged babies you will know, they have a very distinctive cry. His eyes were blank and you would only know he was awake if you saw his eyelids open or heard him cry. <br />
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Cameron couldn't suck so he couldn't feed. He was tube fed. My mother stood by Cameron's cot and decided that she was going to reconnect his brains pathways so he could suck. For two hours she pushed and pulled a dummy in and out of Cameron's slack mouth and slowly but surely Cameron's brain started to spark and his muscles remembered their prior learnt behaviour. Cameron learnt to suck again. <br />
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Eventually Cameron's eyes started to see and his ears started to hear, those pathways reconnected in his brain. As soon as the doctors were able to remove Cameron from all the equipment which was supporting and monitoring his body the therapists moved in. We had multiple daily visits from the physiotherapists and daily visits from the speech therapists and occupational therapists. We started hydrotherapy and our days were busy with doctors and therapists coming and going from our room all day. For those who don't understand - at that stage a speech therapist is working on developing muscles which will be used for speech, so they are interested in eating and drinking not actually speaking. <br />
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When Cameron left hospital the therapy just kept increasing. Very quickly we were doing therapy all day every day. We would go to all the therapy provided by the hospital and government and then we would also pay for private physiotherapy, speech therapy and occupational therapy. We had further therapy that we also did at home ourselves and we researched and found alternative therapies which we hoped might also help Cameron. When government provided services ceased we went out and found private therapists to replace them. This was my full time job, our bank balance disappeared but that didn't matter because we were on a mission to wake up Cameron's brain, reconnect the broken neural pathways and then to help his brain develop normally.<br />
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Cameron at RDA Brigadoon finally able to sit up and support his own body weight with support</div>
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We purposely sent Cameron to a special education school so he would receive a therapeutic based education. He was then also able to receive therapy at school from physiotherapists, occupational therapists and speech therapists. Throughout school we continued to access any available government therapy outside of school and continued to pay for private therapy and alternative therapies as well. <br />
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<tr><td class="tr-caption" style="text-align: center;">Cameron at RDA Swan Valley able to sit independently on a horse without support</td></tr>
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Whilst all that happened Cameron's epilepsy developed into horrendous seizures which lasted for hours and occurred every 3 to 4 months. It became apparent very early on that these seizures were not harmless and they were damaging this brain. Over the weeks following each seizure we would watch and observe what damage had been done and which neural pathways had been disconnected. It became devastating to see him wake up less capable than he had been the day before, months and years of therapy and achievement gone. It took us years to teach him how to blow out a candle, developing breathe control for speech - gone and only just coming back slowly now 15 years later. Toileting gone - Cameron went from being almost toilet trained to looking at a toilet as if it was a scary monster and being terrified. We are still not back to being that advanced in toilet training 10 years later. At around 5 years of age he had a usable vocabulary of signing words which all went and today he only remembers - eat, drink, toilet and occasionally he recalls - more, help and hot. <br />
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<tr><td class="tr-caption" style="text-align: center;">Cameron doing therapy at The Institute of Functional Neuroscience</td></tr>
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After school had finished and Cameron had transitioned out of the children's hospital and government provided therapy services we made the decision to stop accessing mainstream therapies. This was not a rash decision. At the Institute of Functional Neuroscience we had seen significant changes in Cameron, his epilepsy was under control and we had weaned him off all medications. When we made that decision Cameron had already achieved more development in a few years at the IFN than he had in all the previous 19 years of therapies. The only other therapy which had made such a significant impact for Cameron was Riding for the Disabled. <br />
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Today Cameron is still continuing to improve, his epilepsy has not returned and we are starting to see some movement towards toilet training. We've also noticed an increase in attempts to say words. He is developing at an extremely slow rate but it is developmentally appropriate. He is currently around a 2 year old in development.<br />
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Because we were repeatedly being asked if we had considered therapy I started to seriously question our decisions about Cameron's therapies. <br />
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<b>Had we done the wrong thing going to the Institute of Functional Neuroscience? </b></div>
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<b>Should we return to mainstream therapies? </b></div>
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<b>Had we made the wrong choices? </b></div>
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<b>Are we doing the best thing for Cameron? </b></div>
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<b>Would mainstream therapies at this stage be a wise use of money and time? </b></div>
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<b>Should we be doing both?</b><br />
<b>Could our family cope with the stresses and demands of mainstream therapies again?</b><br />
<b>Could we afford more therapy?</b></div>
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<b>Am I just being stubborn and pig headed?</b></div>
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<b>Am I being narrow minded? </b></div>
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<b>Why is this distressing me so much? </b></div>
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<b>Am I going insane?</b></div>
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After some serious discussions with family, friends and professionals; and stressing a lot, I started to understand what was going on. <br />
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We have made the decision to use a therapy which is not recognized by the government. We also still use RDA for therapy and it is also not recognized as a therapy by the government. The system doesn't understand our chosen approach but to us it is common sense - we are using therapies which are making a difference. Why spend money and time on therapies which have not made a positive change just so that people can tick a box? <br />
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Cameron can not be taught to do something that his brain is not wired to do. It doesn't matter how much speech therapy you give him or how many reward charts you set up for toileting, if his brain has not made the developmental connections to learn and retain that learnt behaviour he just can not do it. That is what the IFN is trying to do, help Cameron's brain to develop normally. He has reconnected all the pathways that had connected before he got sick and now we are in uncharted territory trying to connect pathways that never had the opportunity to connect when they should have. <br />
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It is never a bad thing to question your decisions. To step back and take an audit of the situation. However it is extremely distressing when the mainstream system wont acknowledge that something out of the norm is actually working. We experienced this previously when Cameron's brain showed no seizure activity for the first time during a hospital EEG. The hospital didn't ask if we had done anything different or had a discussion as to why this change had happened. To this day the children's hospital does not know that we took Cameron to the IFN and they never questioned the changes. The saddest part of that is that other children have missed out on trying what we discovered. <br />
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I don't regret any of the decisions we have made. They have been right for Cameron who is just a little different to the normal and definitely doesn't fit the box. It would just be nice if professionals who haven't even met us could accept that we always put our child's best interests first and have spent a lot of time, money and effort to do everything possible to help him live the best life possible. Instead of trying to make him fit in the box just accept that the box isn't always the right shape. Unknownnoreply@blogger.com10tag:blogger.com,1999:blog-1293413140088378218.post-73425631011506935352017-03-09T13:40:00.004+08:002020-07-01T14:29:46.547+08:00Happy 25th Birthday Meningitis Centre Australia<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Cameron - Meningitis Centre Australia 25th Anniversary</td></tr>
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Last night Cameron joined Meningitis Centre Australia to celebrate their 25th Anniversary.<br />
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The Meningitis Centre was formed after a group of parents were invited to meet with Dr Fiona Stanley, at the Telethon Kids Institute, to discuss their experiences of having a child contract meningitis. At the time there was very little awareness of meningitis but people were dying, or surviving with disabilities, from this scary disease that can take a life in only a few hours if not treated quickly. As the parents shared their stories it became apparent that awareness needed to be raised amongst the medical fraternity, and amongst parents, about meningitis and the best people to do that were parents who knew first hand how devastating this disease can be. <br />
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We sat in hospital 4 years later and found the Meningitis Centre's very first brochure which became our bible to answer even the simplest of questions, such as - how do your spell meningitis? At this point the centre was very much a support group for families, an information service and advocacy had started to get meningitis vaccinations developed and on to our free Australian vaccination schedule. The driving force behind all of this was Bruce Langoulant who's daughter Ashleigh had contracted Pneumococcal Meningitis 8 years earlier, the same strain of meningitis as Cameron had, and been left with severe disabilities as a result. Their family became our beacon of hope as we sat in hospital with our comatose child not knowing what our future held but instinctively knowing it was never going to be the same again. I could see that life had gone on for them and they had survived, so I was able to convince myself that we would survive too. <br />
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When your child is not born with a disability you automatically don't belong to those parent groups. When your child is not the victim of a horrendous accident or incident you don't belong to those groups either. When your child doesn't have a specific label for their disabilities it leaves you not belonging to any groups for support so the Meningitis Centre became our haven during Cameron's childhood because when we met up with other families who had experienced the same life changing trauma as we had we felt understood and comforted. It hadn't all been a crazy, made up dream. Meningitis Centre coffee mornings became a highlight of my calendar.<br />
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When you move amongst the meningitis community you quickly realize that everybody has experienced different strains of meningitis. Some people have passed away, some have survived with no apparent after affects - although some after affects appear later in time. Then there are those who have been left with many different and varied disabilities and medical issues according to how their body has reacted to their strain of meningitis. We've met people with growth issues, amputated limbs and other body parts, deafness, blindness, cerebral palsy, autism, behaviour issues, mental health issues, brain damage, loss of speech, learning difficulties, lack of physical abilities and many, many more. Then you have health issues with epilepsy being a big one. Everybody is different but every family shares something in common and that is the trauma of what happened the day their family member became ill. That trauma is never forgotten and is scarring. You hear common threads in everyone's stories whether their stories are 25 years old or 2 years old. Every time you hear somebody else's story your emotions swell because you're hearing your story again. <br />
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25 years later, thanks to Bruce and the Meningitis Centre, we have free vaccinations available nationally, in Australia, for Hib Meningitis, Pneumococcal Meningitis, Meningococcal C and a vaccine available for Meningococcal B which you can buy. Plus, just in the last month, Western Australia has shown huge leadership by being the first Australian state to make a free vaccination available for Meningococcal A, C, W and Y, with several other Australian states following their lead. <br />
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Who knows how many lives have been saved due to the meningitis vaccines being developed and made available nationally. How many families have been spared the trauma of this terrifying disease, every family is traumatised no matter what the outcome. Or how many families have been spared the on going trauma and cost of lifetime care for a disabled family member. We will never know but we do know that in Australia Hib Meningitis has now disappeared and all vaccinated meningitis strains have dropped. <br />
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Not everybody chooses to vaccinate, for varying reasons, but the Meningitis Centre has worked tirelessly to raise awareness of all the strains of meningitis in the hope that families will vaccinate. If they don't vaccinate, for whatever reason, then they will hopefully be aware of the signs and symptoms of meningitis and they will be aware of the need for speed in getting medical assistance. We know many people who got help quickly and their family member has been able to go forward with limited or no after affects and live a productive and happy life. Every minute counts. <br />
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The worlds population is now so transient that strains of meningitis previously only seen in certain pockets of the globe are now seen around the world thus the need to expand awareness and vaccination protection globally. The Meningitis Centre didn't stop at only worrying about families in Western Australia or just Australia, they joined with meningitis organisations around the world to form CoMo - Confederation of Meningitis Organisations - to work together globally and assist each other in every ones primary goals, to eradicate meningitis through vaccination and raise awareness of the signs and symptoms. Shared resources and knowledge make a little go a long way and most of theses organizations have been created and run on parent power. <br />
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The question was asked last night if the Meningitis Centre was still relevant 25 years later. Considering their success in raising awareness in the general community about meningitis and in supporting the development of vaccines and then successfully lobbying to make them available to all Australians this was a fair question. But an easy one to answer. Yes it is still relevant. <br />
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In Australia we still have two vaccines which need to be made available Australia wide on the free vaccination schedule, there is still much lobbying to be done. We have doctors questioning parents decisions to vaccinate against diseases not on the vaccination schedule so therefore greater meningitis awareness needs to be increased within the medical community. No parent should vaccinate their child without considered thought but we are hearing repeated reports of some disturbing discussions happening in doctors surgeries. I, myself, have had a few. <br />
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Then there is the need for awareness of the signs and symptoms. As each generation of parents comes along they need the information the previous generations before have benefited from. There will always be people who chose not to vaccinate and those who can not be vaccinated for various reasons and even though we strive for herd immunity, with vaccinations, there will eventually be outbreaks of diseases such as we have seen with whooping cough in recent years. Add those factors to our transient world population moving diseases around the globe and you can never be nonchalant. The cost to our future children is too high.<br />
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There is also the need for support for affected families and meningitis sufferers. Where else are you going to find the understanding and comfort needed than with those who have walked in your shoes. So yes, the Meningitis Centre is still very relevant and will be well into the future. <br />
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So in this, the Meningitis Centres 25th year, I would like to raise a glass to Bruce Langoulant and all the professionals, parents and families who have worked alongside him over the last 25 years to save our children. Bruce didn't set out to only save children from contracting Pneumococcal Meningitis, which affected his family so devastatingly, he set out to save everybody, everywhere from ever encountering the devastation of Meningitis. Thank you Bruce for never giving up the fight, 25 years is a very long time and it's been a long road. You truly can lay down your head each night in the knowledge that you have made a difference and your legacy will live on forever. Parents across Australia tuck their children into bed each night blissfully unaware of how lucky they are that you have made a difference. The vaccines were too late for Ashleigh and Cameron but knowing that others are not living our lives makes it just that little bit easier to live with. <br />
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Happy Birthday Meningitis Centre Australia and all our friends in the Meningitis Community. <br />
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1293413140088378218.post-79994117424621978262017-02-01T11:55:00.000+08:002017-02-01T11:55:01.483+08:00My Life Has Shrunk<div class="separator" style="clear: both; text-align: center;">
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I wrote this blog post two and a half years ago. I was going to update this post but decided it is a capsule of my life at the time so I've left it in it's original state. A few details about my day to day life have changed since I wrote this post but the reality I was sharing is just as true today. <br />
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It's not been a good week starting with the drug debacle <a href="http://thisisnoordinarykid.blogspot.com.au/2014/06/my-nightmare-came-true.html" target="_blank">My Nightmare Came True</a> and ending with my realisation of how little time I've got to myself now. <br />
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When your children start school you feel so lost without them, how on earth will you survive 30 hours every week without them. Then fairly quickly you realise how precious those 30 hours are especially if you are the only one at home. Some people head back to work, others to study, some to voluntary work and then others are super parents making sure the pantry is stocked, the house spotless and everything in control for when the silence is shattered when the school siren rings in the afternoon. Some Super Super parents balance some and all of the above. But regardless of what you do you realise the joy of those 30 hours every week that you can control. <br />
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I did most of the above, I've worked, volunteered, kept house and on occasion slept to maintain my sanity. When My Little Angel came along one of the realisations I had to come to term with was that my me time was gone again for another 5 years until she too started school. Not that I minded. <br />
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I don't say any of that because I see children as a burden or nuisance, I say it because children are the most wonderful and exhausting journey anyone can ever join and having some time out is essential to survival. Then you add the joy of a special needs child and you really, really need some time out because it is especially exhausting. One friend always said my one child was equivalent to six. <br />
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I'm not talking about time out for spas and massages, I'm talking about time that is under your control whether you are working or sleeping, you have made the decision about what you are doing and it is under your control because you can. <br />
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Then your children grow up and leave school and your day to day responsibilities of parenting change to less hands on and more mental worry. Unless of course you have a child with special needs. There's no rest for you because your child still needs hands on daily care, you can't start to take a breath and prepare for the empty nest syndrome. There's no - Well now I've grown my family and now it's time for me - Oh no. <br />
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Instead, for most of us with special needs children, we either work to pay carers so we can stay in the work force or the child free hours we have control over drop dramatically and there is nothing we can do about it, it's a government decision. <br />
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It's ironic really because as the years pass by and you become more and more tired from the constant hands on care that exhausts most parents in those early years we face less time to recuperate and recharge but continue to provide the same level of care to a person bigger and harder to care for. <br />
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Instead of 30 hours a week I now get 16 1/2 hours a week to myself and that isn't a lot especially if carers are late to pick up or early to drop off. <br />
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This really came home to me this last week when a carer was half an hour late to pick up causing me to miss an appointment. I realised I have little control over my life now and no future date when I will have my own life to control again. I'm at the mercy of other people and have to fit around others schedules and decisions for me.<br />
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Of course like everyone else in my position I am making the best of it and getting house work done while Cameron isn't home and anything that is away from home is restricted to four hours on three days. I'm lucky, some people don't even get as much as I have and I feel bad for feeling sad and cheated. But it's pretty sad when you look back and say - My child's school years were the best years of my life. <br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1293413140088378218.post-22443971567289892992017-01-30T17:35:00.001+08:002017-02-01T11:33:22.484+08:00Two and a Half Years Later<h2>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Our family October 2016</span></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It has been 2 and a half years since I last wrote and published a blog post. So much has happened in that time and I couldn't bring myself to blog because this was my happy place and life wasn't feeling too happy. But life is starting to finally change and it's time to re connect with things that make me happy and writing is one of those things. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So for those who weren't able to follow along on Facebook for the last two and half years here is a brief catch up on life:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Cameron was 18 1/2 years old when I last published and he is now 21 1/2 years old.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My Little Angel is now 13 years old and about to start her second year at high school. She is still an angel although at times a very lovable, moody, teenage angel</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My Marvellous Man is still marvellous. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Cameron still has his cat Pav but he also now has a dog called Rocco who is a black Labrador/Retriever. More about how alike Cameron and Rocco are in future posts - they must have been separated at birth in a previous life. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We moved again. I know some of our friends are rolling their eyes as they read that statement, they're sick of moving our furniture although they are very good at it after so much practise. We moved a year ago to a country town an hour out of the city so we can still see our families and city friends, access therapy and MMM could continue working with his employer. This move also brought us to within half an hour of some of our most important support team members - friends who've been friends forever and feel more like family. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We own a home again and it has space so we are no longer living on top of each other, although Cameron spends most of his time within one square metre of me. The house has a huge backyard and our ultimate goal is to build a second dwelling out the back for Cameron to live in independently with support workers and hopefully a housemate. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We are no longer at the mercy of a Support Worker Service Provider when it comes to Cameron's government funding. We took control and now self manage our funding. What this means in a few weeks when we transition to the Western Australian National Disability Insurance Scheme (WANDIS) is a bit of an unknown but we have no plans to let other people control our lives again like it was back in 2014. We have two fabulous support workers whom Cameron adores and so do we. There will be lots more about funding and supporter workers in the coming months, I am sure. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Cameron still goes to Riding for the Disabled (RDA) but he now goes to RDA Murray Mandurah, which is nice and close to home. Last year he was Carriage Driving, which he loves because they go fast. MLA is now a volunteer for RDA which has been a life goal for her. So far I have dodged all the requests and broad hints to get involved at the centre. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Cameron still attends The Institute for Functional Neuroscience. His support worker takes him and I just go in for meetings. It was unusual at first not going to therapy with Cameron and trusting someone else but it was time. He needed his independence from me. He goes into all his appointments and assessments independently and his support worker waits in reception. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I'm sure you are wondering where Cameron is at in his development. Well, to honest he is still a toddler, just a very big and very strong toddler. Still non verbal and still not toilet trained. However he has developed. His fine motor skills and automatic responses are good. His comprehension of situations is amazing at times and there has been absolutely no seizure activity. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">He still growls and grumbles at me.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still follows me around and invades my personal space at the most intimate and inappropriate times. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still wets his bed and clothes on an almost daily basis. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still wanders and gets into trouble a lot. Right now he has just tried to do a runner out the front door when my back was turned and is now down at the TV growling and grumbling because he got in trouble. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still loves his iPad and is onto his second one. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still chats away to me in Cameron language that only he understands. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still eats everything and anything and has to be stopped from over eating. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still loves everyone and never forgets a face.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still loves Playschool and the Wiggles but we no longer put on DVD's or allow him to binge watch either show. He really likes Emma Wiggle.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He loves to get hold of the TV remote and if you show even the slightest interest in a show he will change the channel. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He really likes watching TV Shopping channels. I suspect he thinks they are talking to him. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still loves going out and watching the world and meeting people. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still knocks on doors when he shouldn't.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still loves CARS and he still doesn't have a drivers licence, as I remind him every time he tries to sit in the drivers seat. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still loves music.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still tries to hug and inappropriately touch total strangers. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still loves blondes.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still curls up and has a snuggle with me. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still gives the best hugs.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still has the biggest smile.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He is still VERY LOUD. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still has the loudest, most infectious laugh.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still has a wicked sense of humour.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still makes us laugh.</span><br />
<span style="font-family: "arial";">He still gets us involved in the most ridiculous situations. All you can do is laugh.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He still shares his love with the world.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Cameron is doing really well for Cameron. Of course we wish he was further along in his development but he is developing. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So there you have it, that is where we are at. Life is still crazy and chaotic and I suspect that will never change. We're still exhausted and I can't see that changing for the foreseeable future. We still laugh and cry and work our way through life's challenges in the best way that we know how at the time. Not much has changed really. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">It's been so nice putting finger tips to keyboard. I feel a little bit like my old self again. So much so that I gave the blog a face lift and impressed myself with the realisation that I could still navigate myself around Blogger - it can be a challenge sometimes. So here's to many more blog posts and maybe that book I've been wanting to write. </span><br />
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<span style="font-family: "arial";">Read you all soon.</span></div>
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<span style="font-family: "arial";">Love</span></div>
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<span style="font-family: "arial";">Jane</span><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
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Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1293413140088378218.post-80121908541930832452014-06-26T14:11:00.000+08:002014-06-26T14:11:19.612+08:00My Nightmare Came True<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvyHX_6j8QfYjWaX4D6LzeVwmzHNWjwAvYLabo-zpbW8qyrQ5NIXBce85MRxOdFk2pEWfxT48AXWxfQoNRfvvd03-nJw5s2JaaM6Kk9SPmCAsLjCUswhh9wSXky2bj_hbxpzaCDGJwio8A/s1600/May+2014+203+-+Copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvyHX_6j8QfYjWaX4D6LzeVwmzHNWjwAvYLabo-zpbW8qyrQ5NIXBce85MRxOdFk2pEWfxT48AXWxfQoNRfvvd03-nJw5s2JaaM6Kk9SPmCAsLjCUswhh9wSXky2bj_hbxpzaCDGJwio8A/s1600/May+2014+203+-+Copy.JPG" height="320" width="230" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron 18 years old</td></tr>
</tbody></table>
<br />
I've been quiet for a week because I was in shock and trying to process what happened. Why??? Well ....<br />
<br />
Last week Cameron left our house with a person we had been asked to trust and we believed we could trust. When Cameron arrived home his clothes stunk and I immediately questioned what this odd smell was. It was overpowering and I had to change all his clothes immediately. <br />
<br />
I admit I have lived a sheltered life, yes I drink wine but didn't try alcohol until I was in my twenty's and I've never smoked and have never taken drugs either. <br />
<br />
I know what cigarettes smell like and what cigars and pipes smell like and this smell was nothing like them. It was different and my mind kept searching for an explanation. <br />
<br />
Finally after discussions with several people I realized that Cameron had been in an environment where people had been smoking marijuana. Even as I typed that my brain went numb. How did this happen? This can't be true. <br />
<br />
We don't know if the person he was with was using or took Cameron into an environment where others were using. We don't know if they offered Cameron an opportunity to try it too or if they forced him to try it. Cameron is so young of mind, he would have had no idea that where he was was wrong or that what was happening was wrong. He wouldn't have known what to do or how to remove himself from the situation. He would have stood there like an innocent child. <br />
<br />
Meanwhile we know he breathed in the smoke and was potentially put at risk as the person he was with drove him home. <br />
<br />
My biggest fear of letting Cameron out into the big wide world without us is that he can not speak and tell us what he has been doing. He can't tell us if someone does something to him or that he felt uncomfortable or something was wrong. He can't protect himself by himself and can't remove himself from dangerous or scary situations. He is mentally a toddler and toddlers need protection and others to care for them and speak for them. <br />
<br />
The person Cameron was with took advantage of the fact Cameron couldn't come home and tell us what he had done that day or where he went. He took advantage of the fact he couldn't tell us what the other people were doing or what the person he was with did. He used the fact Cameron couldn't speak to take advantage of the situation and completely abused his position of trust. <br />
<br />
This situation has been my biggest nightmare and now it has happened and it's shaken me up. I want Cameron to go out into the world but I want him to be safe and I want the people who are with him to care as much about him as us. That may seem an unrealistic desire but I don't think so. <br />
<br />
We've been criticised for years for not putting Cameron into respite care or paying strangers to care for him and this very situation is why we didn't. Cameron has no voice and we feared people would take advantage of that and clearly our fear was not unfounded. <br />
<br />
It is awful that Cameron was exposed to drugs but I can get over that, what I can't get over is that Cameron's lack of communication was taken advantage of so the person he was with could do something that was wrong and potentially dangerous. <br />
<br />
I hasten to add that this person was not a family member or friend, thank goodness because if that happened I don't think I could ever trust again. <br />
<br />
Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-1293413140088378218.post-47917227274648048032014-06-20T11:01:00.001+08:002014-06-20T11:01:33.826+08:00I Fake Called Cameron and it Worked <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeX59OL8xUIYfV0TEDD7ObUKyoUJLybnfV_R3PT-BPSu5bQ9NSE01A_tSLH-fRwUqyNr2ZNXtopEZNXfjBkky3QS0cCVmsB-g0vlZdYEcg6x0mCFCMpQBXju6H1-DA-WFKPxpTTktJomfo/s1600/IMG_0216.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeX59OL8xUIYfV0TEDD7ObUKyoUJLybnfV_R3PT-BPSu5bQ9NSE01A_tSLH-fRwUqyNr2ZNXtopEZNXfjBkky3QS0cCVmsB-g0vlZdYEcg6x0mCFCMpQBXju6H1-DA-WFKPxpTTktJomfo/s1600/IMG_0216.JPG" height="320" width="215" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron 18 yrs old and Me (Quite a bit older than him) </td></tr>
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<br />
The other day Cameron was being rather difficult about getting ready to go out with his carer. He'd resorted to sitting on a chair in his bedroom and was refusing to move or get dressed. It didn't matter how I pleaded or demanded, Cameron just wasn't moving. <br />
<br />
What was I going to do, time was ticking away and I needed him ready when his carer arrived. Then I remembered a trick which has worked rather successfully on his sister a few times in the past. <br />
<br />
I fake called his carer.<br />
<br />
"Cam, do you want to go out today with .......?"<br />
<br />
Head shake no.<br />
<br />
"Are you sure?"<br />
<br />
Head shake no with a look on his face that said - try and move me. <br />
<br />
"Alright then I will ring her and tell her that you aren't going today."<br />
<br />
Cam just sat there and stared me out.<br />
<br />
I left and returned with my phone pretending to look up a contact and dial it.<br />
<br />
"Hello ....... this is Jane, Cameron's Mum. Hi. Cameron doesn't want to go out today with you. He won't get dressed because he doesn't want to go"<br />
<br />
Listening to silent phone while Cameron watches me.<br />
<br />
"You're ten minutes away? Okay, well I'll tell him. See you soon." <br />
<br />
Close phone.<br />
<br />
"....... says she is almost here and you better hurry up because she needs you dressed when she gets here and you're to stop being silly." <br />
<br />
Turn around and walk out of room to put phone away.<br />
<br />
Walk back into room to find Cameron walking towards his clothes whilst taking off his top with a rather worried look on his face. <br />
<br />
I was grinning on the inside whilst being very matter of fact about getting Cameron ready because he only had ten minutes.<br />
<br />
I could not believe that the fake phone call had worked. Cameron totally understood the scenario I had played out for him and had taken it very seriously. <br />
<br />
I have to admit I am very lucky that Cameron couldn't walk out and ask his carer about the phone call and therefore couldn't catch me out in my little white lie. I was lucky.<br />
<br />
Then this morning I had another little struggle with Cameron again whilst getting ready for his carer but this time over brushing his teeth. He was standing at the front door waiting for his carer and wearing a huge grin whilst refusing to go to the bathroom. <br />
<br />
"Cameron do you want me to call ...... because I will and I will tell her that you can't go with her today because you won't brush your teeth." <br />
<br />
Suddenly a look of concern crossed his face and he begrudgingly walked slowly towards the bathroom. I wont lie and say the teeth brushing experience was wonderful because it wasn't. It was the usual tussle and argument which I am sick of but at least I did my best to get his teeth clean and he did as I asked so I see that as a Win Win. <br />
<br />
Even though this seems like a little story about getting dressed and brushing teeth it is much more important than that. Cameron understood a very abstract concept and reacted accordingly and I think that is amazing and a reason to be very, very happy. <br />
<br />
<br />
<br />
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1293413140088378218.post-31266398235380251802014-06-19T06:00:00.000+08:002014-06-19T06:00:01.672+08:00Toileting - 18 Year Old Style<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjudfX-ApxGAcuXiYgkZxq4uhtW3JI9r-ZgqYMp6cUA7vAnrd-LR2RaURDoOKa1JLyMm-3ruTVK_2iamCpKFEVtdmDMW3wve7neJIaMDXKc_dPJt2TIRH_YoNx7LpdV_CN9GZPQMvjjGWew/s1600/Cam+blog+004.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjudfX-ApxGAcuXiYgkZxq4uhtW3JI9r-ZgqYMp6cUA7vAnrd-LR2RaURDoOKa1JLyMm-3ruTVK_2iamCpKFEVtdmDMW3wve7neJIaMDXKc_dPJt2TIRH_YoNx7LpdV_CN9GZPQMvjjGWew/s1600/Cam+blog+004.JPG" height="320" width="186" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron 18yrs old</td></tr>
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<br />
The quest for Cameron to become an independent toileter continues. It is painstaking and tiring, frustrating and infuriating. And sometimes it's just plain funny but not very often anymore. <br />
<br />
From time to time Cameron has a dry bed and there is much celebration on my part because I don't have linen to wash that day. Then you also have days where you have two or more sets of linen to wash in the morning because it's been an unsettled wet night. My eyes just roll when I get out of bed on those mornings. It's so frustrating. <br />
<br />
Cameron goes through phases where he will take himself to the toilet and he does actually go to the toilet. However we still have wet pull ups so he isn't doing it instead, it's just as well. <br />
<br />
We have very little success in taking Cameron to the toilet. 99.9% of the time he will not do anything. He just gets frustrated and so do we so we generally don't push the issue. <br />
<br />
Lately he has been having a morning wee in the shower and I figure this is fine. It's all going down the drain and he knows he's doing it so that has to be a positive thing. Sometimes he will tell you he needs to go to the toilet after waking up and takes himself off successfully which is always exciting. <br />
<br />
The other thing he has been doing I think is a positive sign. You know how toddlers will wait till you put a fresh nappy or pull up on them and then do a poo or a wee? Well Cameron has been doing this a lot lately so I think this is developmentally appropriate. But that's not all. <br />
<br />
He has also developed a habit of standing on the front door mat watching the traffic go by and going to the toilet. Toddlers will often have a favourite place to go to the toilet so again I think this is a good sign that this is developmentally appropriate. <br />
<br />
However it is all rather frustrating in the mornings. I get Cameron all ready for his carers so we are ready five to ten minutes before they are due. He then stands at the front door waiting for them and guess what? I am then madly cleaning him up and changing him with seconds to go. We often watch his carer arrive as I am grabbing wet wipes and then I am yelling out to give us a minute. <br />
<br />
I've tried waiting to dress him till the last minute but he still manages to catch me out even if he only has to wait for a minute or two. Friday I thought I'd timed it all perfectly but no, the carer arrived early and he wasn't ready. I can't win.<br />
<br />
Having a non toilet trained 18 year old is horrible. The messy clean ups are horrendous and the constant accidents and wet clothes and wet linen are tiring. But I can see progress so maybe one day we will get there. I just wish one day would hurry up and get here a little faster. <br />
<br />
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1293413140088378218.post-19314612885043202692014-06-18T06:00:00.000+08:002014-06-18T06:00:00.986+08:00Where's Cam? Yelling at People Over the Fence. <div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Cameron 18yrs old</td></tr>
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<br />
Cameron really doesn't have much chance to be independent so when he wants to go outside and look over the fence, I let him. <br />
<br />
He used to stand outside at our old house and look over the fence and there he had a view of the school oval so he watched people jogging and people walking dogs after school. He would have loved it this year now that he isn't at school because he could have watched school sports carnivals and sports lessons. <br />
<br />
Recently some friends arrived and when they did the obvious question was asked - Where's Cameron? Oh, he's outside yelling at people, I said casually. Oh my goodness, he's yelling at people!!!<br />
<br />
Yep, there he was standing at the fence yelling something that was incomprehensible to passers by. I can't imagine what people were thinking and considering some of the people who live around here, I'm surprised we didn't hear people yelling back at him. <br />
<br />
He was quickly enticed inside because we had visitors he loved but today he decided he was going outside and I had a mini panic. What if he started yelling again? The lovely old lady was outside across the road, would she be offended? <br />
<br />
Thankfully he was quiet today and just watched the world go by for about half an hour. But you can see in his eye a wistful look of longing to be out there in the big wide world himself and that makes me feel sad for him. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMKtURILrgaU858-TYJOu0_8Yql2-pHS0YdlbhTbpMtDAIFYGWbAA-04ieVMZixtz3wBQGaRHitTPrKOCmKpkuEBe_w0iStvyzFp0ENqMu8NRP3Xo_8AuBl-cY1LG07qw1RWDZz3N5D_GP/s1600/Cam+blog+June+013.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMKtURILrgaU858-TYJOu0_8Yql2-pHS0YdlbhTbpMtDAIFYGWbAA-04ieVMZixtz3wBQGaRHitTPrKOCmKpkuEBe_w0iStvyzFp0ENqMu8NRP3Xo_8AuBl-cY1LG07qw1RWDZz3N5D_GP/s1600/Cam+blog+June+013.JPG" height="220" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron 18 yrs old</td></tr>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1293413140088378218.post-27897227741739599122014-06-17T06:00:00.000+08:002014-06-17T06:00:05.542+08:00Just How Many Pairs of Jeans Does One Person Need???<div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Jeans</td></tr>
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This post is not an advertisement and has not been paid for. </div>
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I just like to tell people when I think a product or service is good. </div>
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<br />
Recently I took Cameron shopping for Jeans. He very inconsiderately grew out of about 4 pairs of last years jeans and now that we don't have school uniforms we need more casual clothes. <br />
<br />
We walked into our favourite men's wear shop - Ed Harry at Southlands Shopping Centre and told our favourite shop assistant, who's name I think is Hannah - that I needed 4 pairs of jeans for Cameron. She is like the angel of shop assistants and has been dressing Cameron for the last few years. She guided us through the transition from children's clothes sizes to men's and also guided us into what was appropriate and fashionable for Cameron to be wearing. Cam's been looking pretty cool ever since we met her. <br />
<br />
We started searching around the shop discussing what the other guys his age are wearing and what will look good on him. We eventually walked into the change rooms with an arm load of jeans. <br />
<br />
Thankfully nobody else was in the change rooms and I was able to put Cameron into the end room where I could keep the door open and let him walk out to look in the mirror at the end of the passage. The change rooms are way too pokey for two adults. <br />
<br />
I started undressing Cameron and he started growling. I'd stand up and undo his button and zip and then squat down as I pulled his jeans down and wrangled them off his feet with him grabbing onto whatever he could find to keep his balance. Cam kept growling. Jeans fitted and jeans didn't fit and the jeans kept coming until at one point I was completely confused as to what fitted and what didn't. But Cam kept growling. <br />
<br />
I started to get really hot and then the sweat started. I was getting quite a work out trying well over 20 pairs of jeans on Cameron. And Cameron didn't appreciate one single drip of my sweat, he was just mad that I kept putting jeans on him and taking them off him. <br />
<br />
We eventually ended up with 6 pairs of jeans that fitted and I was so exhausted that we bought them all. I wasn't going through all that to leave something that fitted in the shop. <br />
<br />
Cameron happily escaped the change room and proceeded to check out the service desk and try and use the computer while Hannah and I sorted out my mess. <br />
<br />
As I stood there ready to pay Cameron's growls were still ringing in my ears and then the thought occurred to me that nobody else had come into the change room while we had been in there and we'd been in there a long time. I quickly apologized realizing that we possibly put customers off with our racket. That is when Hannah said the sweetest words I'd heard in a while. <br />
<br />
<div style="text-align: center;">
"You didn't but if any customers had said anything they would be customers I wouldn't have wanted anyway." </div>
<br />
My heart melted, how often do we as special needs parents receive such support from people in the retail world. I wanted to cry. <br />
<br />
Over the last few years Cameron has really challenged us as we have bought him clothes at Ed Harry and Hannah has always looked after us with a smile on her face and wonderful support. She is one of our favourite shop assistants.<br />
<br />
You would think 6 pairs of jeans was a little excessive but I am so glad I bought them all because Cameron being Cameron has actually wet his way through most of them in a day, a couple of times now. We always need to be prepared as the Girl Guides say. <br />
<br />
The morning after our shopping exhibition I woke up and as soon as I moved my legs I felt pain shooting through my thigh muscles. I lay there for a second wondering why I was in so much pain and then it came to,. I'd done squats for 45 minutes the day before and now my muscles were complaining - loudly. Ouch. <br />
<br />
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1293413140088378218.post-20755195079061265892014-06-16T13:57:00.004+08:002014-06-16T13:57:52.190+08:00Cam Got a Haircut .... Ooops<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikLV1-RoEzgjx3As7gJ9RIt884SHg6f5Hpho1Y-5qMM7JkuwcxwH8k-_JeULTSLbhrBZGllC86_zeKYY3H3QyBo28wKUFWt4mACih4G52LVqEXIjw7B2_DsAisfOjLP-ZSFo5crp7QvUzC/s1600/Cam+blog+June+001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikLV1-RoEzgjx3As7gJ9RIt884SHg6f5Hpho1Y-5qMM7JkuwcxwH8k-_JeULTSLbhrBZGllC86_zeKYY3H3QyBo28wKUFWt4mACih4G52LVqEXIjw7B2_DsAisfOjLP-ZSFo5crp7QvUzC/s1600/Cam+blog+June+001.JPG" height="320" width="264" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron 18yrs old</td></tr>
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<br />
On Saturday Cameron went with MMM to get a much needed hair cut. I was referring to his hair as Sideburns Gone Wild. He really needed a hair cut. <br />
<br />
They went to the new hairdresser we had found after a bad experience at a hairdresser a few months back. He looked so bad that time I actually felt he needed to go and get another hair cut. Prior to that we had been travelling back to his old hairdresser near our old house. Changing hairdressers is one of the bad aspects of moving. I still haven't braved up myself. <br />
<br />
MMM has done such a great job of teaching Cameron how to behave in hairdressing salons and Cameron has built up his skills to the point that he can now sit in the chair independently. I'm so proud of him and I think he's proud of himself. <br />
<br />
This visit MMM settled Cameron into a chair and spoke with the hairdresser before leaving them both and sitting in the waiting area. Cameron did really well and after a quick consult with MMM about whether product should be put in his hair or not the hairdresser was just tidying up the back before the hair cut was over when ........<br />
<br />
Cameron whipped around to look at something. Whooops. the clippers shot up through the back of Cameron's hair leaving a very uneven hair cut. <br />
<br />
The poor hairdresser then had to even his hair up meaning that as the temperatures are dropping here in Perth, Western Australia and we are rugging up for winter Cameron is now sporting a very cool summer length hair cut. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6oEJvmBzfajt0HMtV7ODFyp1MTIgRut9Ci5pLLZbEqndWuPStwWnEiIdy8p5RB57Bg84gFjvrjxeoGaFWZlalVghKf9FoP0uP4Cst8TnPCUHCQe7N96PAmyXoX02JbC-7yPGgRMs67-0H/s1600/Cam+blog+June+004.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6oEJvmBzfajt0HMtV7ODFyp1MTIgRut9Ci5pLLZbEqndWuPStwWnEiIdy8p5RB57Bg84gFjvrjxeoGaFWZlalVghKf9FoP0uP4Cst8TnPCUHCQe7N96PAmyXoX02JbC-7yPGgRMs67-0H/s1600/Cam+blog+June+004.JPG" height="320" width="247" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron 18 yrs old</td></tr>
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<br />
What a duffa. Oh well, his hair is cut and it will be a while before he needs another one. And full marks to his hairdresser who dealt with the situation so beautifully. We have definitely found Cameron's new hairdresser. <br />
<br />
Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-1293413140088378218.post-17907986717188066182014-06-13T11:43:00.000+08:002014-06-13T11:43:12.099+08:00Knock Knock, Who's There ........<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibaLOlUiqTs30kvIheoiOtQSkOCWx9NUsyAsESToT_fuGHae4KHKoE95vnCI5DOzRT8ddCnHeBPFychnGEOGACnpUimsyV_vMjPm1DRLuNf_4lGRoEXtZRfKTCeGrfzZF9W3bj_IwWjGvp/s1600/IMG_0213.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibaLOlUiqTs30kvIheoiOtQSkOCWx9NUsyAsESToT_fuGHae4KHKoE95vnCI5DOzRT8ddCnHeBPFychnGEOGACnpUimsyV_vMjPm1DRLuNf_4lGRoEXtZRfKTCeGrfzZF9W3bj_IwWjGvp/s1600/IMG_0213.JPG" height="320" width="240" /></a></div>
<br />
<br />
Knock Knock<br />
<br />
Who's there?<br />
<br />
Knock Knock<br />
<br />
Cameron, you don't need to knock. <br />
<br />
Cameron has decided that you should knock when entering doors in any situation. That includes his bedroom, shops, the bathroom, the dance studio, the laundry, our front door and public toilets. <br />
<br />
I am presuming that Cameron was taught to knock at school, probably when entering other class rooms or staff members offices. However, Cameron being Cameron has decided that this skill is required in all situations no matter how ridiculous it seems. He has a habit of adapting skills he learns in one situation into other situations whether they are appropriate or not. <br />
<br />
He knocks on the door of The Institute and then knocks on the door of the empty therapy room we enter. He will even knock on the main door when we are leaving The Institute. It doesn't worry him if there is no actual door or if the door way is enormous or small, he will find something to knock on. <br />
<br />
When shopping he insists on knocking as we are trying to enter shops and has also knocked as we entered the disabled toilet. This could be looked upon as politeness but when it's done Cameron style it's frustrating.<br />
<br />
The funniest knocking is at home where he will knock on his bedroom door, the kitchen door, the front door as we are trying to enter or exit. We keep all the doors open so he isn't entering closed rooms. I don't think I've caught him knocking on his wardrobe door but I wouldn't be surprised. <br />
<br />
So life is full of ......<br />
<br />
Knock Knock<br />
<br />
Cameron you don't need to knock<br />
<br />
Knock Knock<br />
<br />
Cameron stop knocking we just have to walk in<br />
<br />
Knock Knock<br />
<br />
Cameron, let go of the door frame and just get in there. <br />
<br />
You never know, one day he might actually tell me a knock, knock joke but in the mean time at least I know he understands it's polite to knock, <br />
<br />
Unknownnoreply@blogger.com0