tag:blogger.com,1999:blog-76199497884692408162024-03-10T02:46:06.264+00:00Autism with LoveUnknownnoreply@blogger.comBlogger85125tag:blogger.com,1999:blog-7619949788469240816.post-89965802433895585662020-06-03T18:46:00.002+01:002020-06-03T18:46:37.611+01:00Bourbon Badger Plush Now Available <center>
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40% SALE & Bourbon Badger Pre-Order</center>
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As we continue to move our blog over to the shop website I thought I may share a post to let you all know about our massive 40% sale that is due to end tomorrow morning at 9am.</center>
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We have some amazing collections available all at affordable low prices and a pre-order option for our second book in the series Autism with Lola - Lola's Wobbly Lunchtime and the absolutely stunning Bourbon Badger Plush!</center>
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<b><a href="https://autismwithlovepublishing.com/product/lolas-plush-and-pin-pack/" target="_blank">ORDER NOW - Autism with Love Publishing®</a></b></center>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-32023712063173652542020-02-22T22:56:00.001+00:002020-02-22T22:56:43.389+00:00Lola's Wobbly Lunchtime - Pre order <center style="text-align: justify;">
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<span style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Verdana, sans-serif;">Will YOU be a part of the project that hopes to change autistic lives for the future? We have already published Book 1 - Playing with Bourbon Badger in the Autism with Lola children’s book series and for the Autism with Love Publishing® team to be able to continue helping the next generation understand and accept differences in neurology a </span><span style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Verdana, sans-serif;">kickstarter</span><span style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Verdana, sans-serif;"> campaign has been created and is ready to launch on 24th February.</span></center>
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<span style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; text-align: justify;">"Kickstarter?" You say! What is that?</span></h2>
<span style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-weight: normal; text-align: justify;"><span style="font-size: small;">Well, let us tell you the basics. We set a target goal of how much money we would need to complete stage 2 of this initiative and if we DO NOT reach that set GOAL - nobody is CHARGED!</span></span></span></h2>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">But this isn’t fundraising in the typical way that you see on-line when people ask for donations for nothing in return. We are not asking you for money in return for nothing. OH NO! </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">Every backer will receive a reward. Wether that is at the basic level and you donate £5 for a special mention and a pin badge of your choice, or you pledge £15 for a first edition signed copy of Book 2 - Lola’s Wobbly Lunch Time and some extra EARLY BIRD goodies should you pledge in the first 24 hours, the choice is yours. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">There is a reward for EVERYONE! (A sneak peek of some special rewards below)</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">Its basically a fancy PRE-ORDER service which enables us to get more products out to you more quickly and of course releases the financial burden on the Autism with Love Publishing® founder Jodie Isitt so that she is able to continue writing and building this BRAND without financial restrictions </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">Of course its not all about you pledging money! NO! If you cannot contribute financially, sharing this project with others is one of the most important parts of awareness because the more people that see us, the more chance we have in succeeding. You might say that your generosity in sharing this project is the most valuable part. </span></span></div>
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<span style="-webkit-font-kerning: none;"><span style="font-family: Verdana, sans-serif;"><span style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial;">You can do this by using the sign up form at the bottom of this page so that you’re the first to know when we go LIVE. Or you can follow us on Facebook for daily updates! </span></span></span></div>
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<span style="color: #741b47;"><a href="https://autismwithlovepublishing.com/lolas-wobbly-lunchtime-campaign" target="_blank">Sign up HERE for the latest news and to be the FIRST to get the EARLY BIRD discount!</a></span></h2>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-39843665026422238112019-04-05T12:22:00.000+01:002019-04-05T12:22:07.190+01:00Autism with Lola - Playing with Bourbon Badger<center>
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<span style="font-family: Verdana, sans-serif;">I have designed and created these beautiful children's stories that are written in a gentle and relatable way so as to enhance the understanding of Neurodiversity in young children. Cute woodland characters will take their readers on an educational journey to embrace differences such as living with Anxiety or being Autistic, whilst teaching them ideas for kindness and creating learning opportunities for young children which will empower them and give them the knowledge they desperately need so that they are always confident in Neurodiversity.</span></center>
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<a href="https://autismwithlovepublishing.com/book-1-pre-order-page/" target="_blank"><span style="font-size: large;">PRE-ORDER HERE - Autism with Love Publishing </span></a></center>
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<span style="color: #c27ba0; font-size: large;"><u><b><span style="font-family: Verdana, sans-serif;">The Dream:</span> </b></u></span></center>
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<span style="font-family: Verdana, sans-serif;">I had spent a long period of time <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">advocating</span> for services for my children when the time had come that I realised I had practically secured the educational provision for all of my children and our hectic lifestyle started to settle down somewhat. One night whilst <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">reflecting </span>on the events of the last few <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">anxiety inducing</span>years I started to feel like I hadn't had a chance to <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">chase my dreams</span> and I simply needed to do more with my life. I knew that although I had worked hard to secure a good future for my children, there would be <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">thousands more families </span>like ours who would be experiencing the same unnecessary<span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">fight</span> that we had just reached the end of and I desperately wanted help these families but the issue that many face is too <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">vast</span> and I found that I was barely scraping the surface.</span></div>
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<span style="font-family: Verdana, sans-serif;">It was late one evening, as I desperately tried to shut off and drift into sleep that I had a sudden realisation that in order to reach as many people as I could was to focus on<span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">teaching young children</span> about neuro - diversity. The next generation is <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">THE</span>best place to start teaching <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">diversity</span>and acceptance and kindness </span></div>
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<span style="font-family: Verdana, sans-serif;">It made me realise that when I was younger, I was <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">NEVER</span>taught about disabilities which led to fear and confusion towards disabled people. I was <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">scared.</span> I would be devastated if any child were scared of mine simply because they were <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">different</span> from what people perceived to be<span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"> normal</span> I knew that I had do something to create acceptance for these children and adults who are <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">autistic</span> or have <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">anxiety</span> as well as the co-existing conditions that can sometimes segregate these people from their peers.</span></div>
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<span style="font-family: Verdana, sans-serif;">I am <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">passionate </span>that the next generation of people will be accepting, kind and equipped with the <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">knowledge</span> that disabilities aren't <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">scary</span>, and people needn't be afraid anymore. We need to talk about it. We need to learn and most importantly we need <span style="border: 0px; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; font-weight: 700; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">equality.</span></span></div>
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<span style="color: #c27ba0; font-size: large;"><b><u>The Vision:</u></b></span></center>
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<span style="font-family: Verdana, sans-serif;">My vision was simple: I wanted to create some short picture books for children ages 3-9 using my daughters experiences and turning them into opportunities where the young <b>children can learn how to be a good friend, </b>how to be understanding and kind whilst not forcing <b>responsibility</b> upon them. I envisaged a class of woodland characters, where there was one main friend who could become a role model and give children the tools they need in order to learn how to be inclusive. To capture the attention of the children I have used a Rabbit as the main character which is based on Lola and then a badger to be Lola's friend. Essentially he would become a <b>role model</b> for the children reading these books and inspire them to understand differences whilst being kind, inclusive and most importantly what it means to be <b>“A Good Friend”</b></span></div>
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<span style="font-family: Verdana, sans-serif;">Next I enlisted the help of an<b> Occupational Therapist - Lucy Bates,</b> and a <b>Speech Pathologist - Molly Rai Dresna</b>, who would help guide the teachers or parents reading these stories on how to deliver the books' message and use the stories as a teaching point so children can start to recognise that differences aren’t scary. Lucy and Molly have created a <b>professionals section</b> of the book suggesting questions and activities to fully develop the understanding of children by using recall as the main tool. Along with the <b>professionals section </b>there will be a range of free downloadable files to use alongside each book to make learning fun and exciting. Giving the children a physical learning experience as well as a mental one is crucial for <b>retaining information</b> that they can fully develop into <b>real life skills.</b></span></div>
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<span style="font-size: large;">The Reality:</span></center>
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<span style="font-family: Verdana, sans-serif;">I knew what I wanted to create however the reality of <b>turning a fleeting idea </b>into a <b>fully funded, illustrated, edited and published story</b> was a lot different to how I imagined. Creating stories that flow, don’t contradict, are simple yet beautiful has an extremely complex process. Once ideas are floated about and another change is added the story can sometimes break down which is why it is of the utmost importance to hire a <b>critique.</b> Laura has worked wonderfully on this project and has the same <b>passion</b> and <b>vision</b> as I have had from the beginning. Illustrations have been chopped and changed and re-designed to make the visual element absolutely perfect and true to the brand that I am trying to create.</span></div>
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<span style="font-family: Verdana, sans-serif;">In reality - this idea was born in January 2016. We're now in 2019 and I am very very near to having a publish date. I am so excited to get this off the ground and with a further three books already written and waiting for illustrations the whole 1st series should be published this year. I want to thank everyone who has supported me and the team on this journey from shares and likes, to the amazing team behind the scenes who have bought my dream to life!</span></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-9194856799341707032018-09-22T13:20:00.003+01:002018-09-22T13:20:34.417+01:00Pathological Demand Avoidance- Non-Negotiable Behaviour - PART 3<center>
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<span style="font-family: Verdana, sans-serif;"><u>Choosing Your Non - Negotiables</u></span></h3>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">So by now, you’ve hopefully read the previous two posts:</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;"><a href="http://www.autismwithlove.co.uk/2018/09/pathological-demand-avoidance-reducing.html" target="_blank">Reducing Your Child’s Anxiety - Introduction</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;"><a href="http://www.autismwithlove.co.uk/2018/09/pathological-demand-avoidance-reducing_20.html" target="_blank">Reducing Your Child’s Anxiety - Does It Really Matter?</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">Hopefully by this point you have learnt a few things that are important to the overall goal of reducing anxiety and that your language needs to change when speaking to an highly anxious child in order for them to be able to follow hidden instructions or comply with demands that are necessary to living a fulfilled, happy and safe life. You’ve learnt that by changing your language you child will feel less dictated to which will hopefully allow their anxiety levels to decrease to a much more manageable scale whereby they’re able to feel a little more in control of their own lives and be more approachable, more resilient, and most importantly less stressed and a <b>LOT</b> more happy. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">Secondly, I talked about<i> ‘<b>Does It Really Matter?’</b></i> Ignoring the small issues that arise that aren’t high on your list of changeable behaviours so that you can concentrate on 2-3 major ones that needed to change because of heath or safety reasons, like their personal care skills, or violence. I spoke of the importance of letting everything else go because it was necessary for the child to realise that your low demand approach and your language direction was going to be a consistent and reasonable change that would eventually become normality for them and they would begin to trust that actually they could make their own choices and they could be in control of their lives by making the right choices. This would also teach them the crucial part to this new strategy which is the end goal, that your Non - Negotiable behaviour rules could be followed as a result of the low demand environment and language change that had taken place. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">Having a low demand environment for an anxious child will slowly but surely allow them to comply with the things that you simply cannot let go.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;"><b>Our Non - Negotiable rules and the reasons why we picked them. </b></span></span></div>
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<span style="font-kerning: none;"><span style="color: #a64d79; font-family: Verdana, sans-serif;">1 - No Violence. EVER. This includes self - injurious behaviours although theres no consequences for this but a lot of Love and understanding instead. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">When Lola was three years old her sister Connie - Mai was born. This was the worst time of our lives and it should have been something we cherished and remembered for all of the right reasons, instead of all the wrong ones. When I look back on those days I feel relief that we’ve made it this far and we have only had ONE majorly serious incident where Connie had to have an operation on her finger nail as it was slammed in the bedroom door. From that day on I knew that things desperately needed to change so that I was able to keep my other children safe and for Lola to be able to find joy in life and not be angry, and distanced and frustrated 100% of the time. This is why no violence is tolerated and will always be my most important non - negotiable.</span></span></div>
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<span style="font-kerning: none;"><span style="color: #a64d79; font-family: Verdana, sans-serif;">2 - She MUST brush her teeth at least ONCE a day. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">Lola has had some difficulties with her teeth, some problems from not brushing properly or regularly. Other problems are due to her delay in development and her teeth not forming properly. When my children were younger they were never allowed sweets and chocolates daily. They were also never really allowed juice on a regular basis. I told people that until they were old enough and responsible enough to CHOOSE to brush their teeth regularly and properly, then and only then could they choose what they ate or drank. Of course as Stanley got older and more independent we became more relaxed about his boundaries on Chocolates and juices and so naturally without even realising it, they were all eating what they wanted. This needed to change because the demand of brushing teeth, the sensory issues that go along with it like the foaming of the paste, the taste and smell made things pretty difficult and we needed to introduce this as a Non - negotiable. The consequences for this are choice based. She can choose to brush her teeth and have no dietary restriction or we simply do not buy it or she isn’t allowed it. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">Sure she sometimes resists, and sometimes it causes a meltdown, however once we’ve passed the worst of the introduction then it gets better. She is in control because as she has chosen to brush her teeth she can also choose what she wants to eat. And THAT is the beauty, because although it sounds like a reward based approach, we actually reverse the reward. So when the first two steps are taken and achieved you can eventually tweak this into a way thats more manageable, so instead of giving the cake or sweet as a reward, you allow the cake or sweet, but only on the condition that teeth are brushed after. If teeth aren’t brushed after then Lola knows that the next time she asks she will have to brush her teeth before or she wont get it.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: Verdana, sans-serif;">This whole approach <b>HAS</b> to be determined by your child and how they can cope going forward with all the changes. It has been a long road here for us, like I said previously there is no magic wand. Things DID get worse before they got better but they DID get better and that is why I want to share our story. On a whole at the moment, and the boat hasn’t been rocked yet, she is in a GOOD place. I am so proud of her and how she now manages a non-negotiable. </span></span></div>
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<span style="-webkit-font-kerning: none;"><span style="font-family: Verdana, sans-serif;">Next week I am going to write about when and how you can start to increase the demands and change non-negotiable rules and sum up the whole series of blogs and elaborate on our change in language and the types of behaviours we ignore or the instructions we leave out as they aren’t necessary in order to create a low demand, low anxiety household for Lola to be the<i><b><span style="color: #a64d79;"> awesome little girl she is growing in to. </span></b></i></span></span></div>
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<span style="-webkit-font-kerning: none;"><span style="font-family: Verdana, sans-serif;"><b><span style="-webkit-text-stroke-width: initial;">To be sure </span>that you<span style="-webkit-text-stroke-width: initial;"> </span>won't<span style="-webkit-text-stroke-width: initial;"> miss a blog post please subscribe to follow our journey, and my inbox is ALWAYS open for any questions or advice you need.</span></b></span></span></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-19056917946689615672018-09-20T10:07:00.000+01:002018-09-20T10:07:30.650+01:00 Pathological Demand Avoidance - Reducing Your Child’s Anxiety - PART 2<center>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">I am a little overwhelmed that there were so many people reading the introduction to - <a href="http://www.autismwithlove.co.uk/2018/09/pathological-demand-avoidance-reducing.html" target="_blank">Reducing Your Child’s Anxiety </a>- and also so sad that so many of our children are struggling so terribly. I sincerely hope that the strategy I am about to share with you gives you an extra option in your tool box and a little hope that something, anything, just may work to help reduce your childs evident stress and mental exhaustion so that they can gain some relief from their anxiety. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Sometimes when you try a new way of parenting or some different strategies your child’s anxiety may increase a little before you see any improvements, and I want to reassure that this is completely normal. Its a different way of parenting and things are changing and it can be a little confusing for the child to comprehend straight away that actually they can control this and they can trust you. Its not about allowing your child to get away with everything - although sometimes when you’re tired I totally understand that it can feel like that at times or that people are judging you for your parenting decisions. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">This is <b>YOUR</b> child. <b>YOU</b> make the decisions in the way that you help manage your child’s difficulties and if it works then don’t allow anything or anyone to challenge what works for your family.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">There are three steps to the parenting style that we use and they need to be used in the correct order, consistently from day 1.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">The most important thing Is to sit down with the people around you, who live with you, or have parental responsibility and work out the Three <i>(maximum)</i> issues or behaviours that you would like to turn around, or change or eliminate. You cannot have more than three because if you do you’ll be back at square one and things get complicated and theres too much to tackle at once. Creating three non-negotiable behaviours, or challenges that are essential and have some sort of consequence - and this could be a natural consequence (<i>which i’ll explain a bit more about later</i>) </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">The consequence should be treated with caution though. You shouldn’t consequence a child with things that are involved with a sensory diet, or is a repetitive or calming activity that your child uses as part of their routine, and this is where consequences can become a bit complicated. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">You don’t want to introduce these non - negotiable behaviour “rules” <i>(pssss don’t call them that to the child it will only increase their anxiety)</i> - and then take away their I-Pad which helps them sit still for more than two minutes, or keeps them calm in stressful situations and then end up not only stressing your son or daughter out, but punishing yourself and your family at the same time. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Take away their pudding, or their after School treat. <i>(as long as that isn’t routine based also)</i> You see, this can be quite confusing and the structure of this can be changed and alternated as you wish and as you grow together. You all want to be comfortable in the knowledge that your child isn’t distressed, and the family aren’t all walking on egg shells. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">For example - When Lola becomes violent, which is our top non - negotiable I make sure that the others are okay before I remove Lola from the room and take her to her bedroom. <b>That <i>is</i> her consequence.</b> However, because Lola doesn’t like to be on her own and will not stay there I have to be with her. I use no spoken language and avoid eye contact. Sometimes I’ll make myself busy with tidying around but other times I will sit there and wait until I know she’s going to be responsive to physical contact. Then I will calm her down before I speak to her about what happened. Sometimes this part of the process can take the longest, because she may not be responsive to verbal communication for a long time afterwards and so in these circumstances I will leaver in her room, put her TV on and allow her some time to process whats happened on her own. Violence is NEVER accepted in our house and I know that I am fortunate enough to be in a position where Lola is not stronger than me, and has very rarely been violent to me directly, so this advice may not be of benefit to some people who have older or much stronger children than myself, but you can adapt these techniques to suit you and your child as long as its benefitting you. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">I will always have a conversation with Lola about what happened and sometimes she doesn’t remember, which is quite common for children with Autistic Spectrum Disorder particularly when they’ve been violent as part of a meltdown. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">So choose wisely, and carefully and be realistic. We want this to succeed, and for it to succeed you need to lower your expectations considerably for this to have the desired effect. Remember what it is you’re aiming for and the key point to remember when implementing these ‘non - negotiables’ is that anything else is considered IGNORED. Ask yourself continually “does it really matter?”</span></span></div>
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<span style="font-kerning: none;"><span style="color: #e06666; font-family: "verdana" , sans-serif;">“Does it really matter?” - If she hasn’t brushed her hair.</span></span></div>
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<span style="font-kerning: none;"><span style="color: #e06666; font-family: "verdana" , sans-serif;"><b>NOPE</b></span></span></div>
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<span style="font-kerning: none;"><span style="color: #f6b26b; font-family: "verdana" , sans-serif;">“Does it really matter?” - If she is wearing shorts instead of the pretty dress you picked out for her for a princess birthday party. </span></span></div>
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<span style="font-kerning: none;"><span style="color: #f6b26b; font-family: "verdana" , sans-serif;"><b>NOPE</b></span></span></div>
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<span style="font-kerning: none;"><span style="color: #93c47d; font-family: "verdana" , sans-serif;">“Does it really matter?” - If he wants to lay in the middle of the room on the floor in the way of everyone else lining up cars or books. </span></span></div>
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<span style="font-kerning: none;"><span style="color: #93c47d; font-family: "verdana" , sans-serif;"><b>NOPE</b></span></span></div>
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<span style="font-kerning: none;"><span style="color: #6fa8dc; font-family: "verdana" , sans-serif;">“Does it really matter?” - If he wants to wear odd socks. </span></span></div>
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<span style="font-kerning: none;"><span style="color: #6fa8dc; font-family: "verdana" , sans-serif;"><b>NOPE</b></span></span></div>
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<span style="font-kerning: none;"><span style="color: #8e7cc3; font-family: "verdana" , sans-serif;">“Does it really matter?” - If she always has to be the first one out the door. <b>NOPE</b></span></span></div>
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<span style="font-kerning: none;"><span style="color: #c27ba0; font-family: "verdana" , sans-serif;">“Does it really matter” - If they asked for ham and you made ham, but now they want marmite. </span></span></div>
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<span style="font-kerning: none;"><span style="color: #c27ba0; font-family: "verdana" , sans-serif;"><b>NOPE</b></span></span></div>
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<span style="-webkit-font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">They need to see that not everything is a demand. By using the examples above I hope that you can the positive instead of the negative in them and that is key to changing your mindset and your language. So he wants to wear odd socks, at least he got them on! Yes she did ask for ham, but if it encourages her to eat on time then hell I am going to make another with marmite in it. <b>“DOES IT REALLY MATTER?”</b> is a question I find I ask myself almost automatically now, and that also came with the notion of “If you’re going to end up saying YES, then why bother saying NO in the first place.” Honestly I cannot stress the phrase of<b> “DOES IT REALLY MATTER?”</b> any more importantly than I have.</span></span><br />
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<span style="-webkit-font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Please subscribe if you want to read more about Reducing Your Child's Anxiety, Just simply enter your email address in the box on the right hand side of the page and you will never miss a post again. </span></span><br />
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<span style="-webkit-font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Lots Of Love....</span></span></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-18256398703847240062018-09-18T12:02:00.002+01:002019-11-13T10:29:27.078+00:00Pathological Demand Avoidance - Reducing Your Child's Anxiety<center>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;"><b>Parenting can be hard, it can be challenging and frustrating and confusing, navigating your self in a world which is dominated by social media and as a No 1 go to for parenting tips and advice in the form of forums and Facebook groups and blogs, you’ll often find conflicting advice on how to help your child with certain difficulties and find yourself in a tug of war with other parents judging you for the decisions that you make.</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;"><b>Throughout this blog post I will be focussing on our journey with Lola and how we have made major changes to our parenting to help Lola with her anxiety which has helped us as a family grow together. </b></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;"><b>Some people may find they’ve already tried these techniques, or that their child is too old, or too anxious or wont be able to comprehend the changes due to learning difficulties. </b></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;"><b>Please keep an open mind, if you are at your wits end and have tried everything then there is no harm in giving these strategies a good go before ruling them out. These strategies can be used and adapted depending on your child's age, or cognitive ability and can swapped weekly or monthly until you settle on a natural understanding routine that you are all comfortable with.</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Lola was diagnosed with Autism with a demand avoidant profile in November 2017. She was 8 years old. We knew about Pathological Demand Avoidance from when she was around age 3, but as we didn’t have a diagnosis and her profile was so spiky I think we had a natural reluctance to push through and allow these strategies to become a normal part of our life and thus the improvements were in spurts and never long term. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">I cant give you a magic wand I’m afraid, I so wish I could, because I completely understand the difficulties that you and your family have whilst trying to lead a calm and joyful life together with making sense of this long journey that feels like it is never ending. There is no quick fix, no magic wand and its going to take a lot of consistency, patience, understanding and a firm partnership with those around you who are involved with your children’s upbringing.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Firstly, you need to relax, take some time to compose yourself and really think about how you are going to tackle this. Think about it realistically - How will everyone else cope or be affected? and how will those around you be supported so that they can understand why this approach is necessary? For this to have a better chance at being successful you need everyone to be supportive and backing your decisions 100%. Think about what is really important for your family? What do you want to gain most from changing your parenting technique? </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Your child who is demand avoidant is struggling with anxiety because they feel out of control. They need you and everyone around them to adopt techniques that will enable their anxiety to reduce, to a level that they feel comfortable enough to feel in control and mentally able enough to begin to follow normal everyday routines, without the extreme avoidance that has an impact not only on the child but on everyone around them. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Language is the key component to managing a child's demand avoidance. Language is also the most complex component to engaging with a child. Each child is different, and thus their ability to understand, process and interpret language is going to be different also. The main point to remember when using spoken language to a demand avoidant child is to change your terminology and use of instructions. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;"><b>TRY NOT TO INSTRUCT</b> <span style="background-color: white;"><span style="color: #c27ba0;">Instructions indicate there is</span></span> <b>NO CHOICE.</b> </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;"><b>NO CHOICE</b><span style="color: #6fa8dc;"> leads to a rise in</span> <b>ANXIETY.</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;"><b>ANXIETY</b><span style="color: #8e7cc3;"> causes the child to feel </span><b>OUT OF CONTROL.</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;"><b>OUT OF CONTROL</b><span style="color: #f6b26b;"> increases</span> <b>HIGHER LEVELS OF ANXIETY</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;"><b>HIGHER LEVELS OF ANXIETY</b> <span style="color: #f1c232;">results in </span><b>DEMAND AVOIDANCE</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">When you change your language, magical things can happen, maybe not overnight, but in time your child’s anxiety will decrease and you’ll find that they are much more tolerant and much more able to comply when they aren’t bombarded with instructions or demands and they are able to process things more constructively and peacefully. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Its equally important to note here, that even though a child with demand avoidance is more tolerable, the language should <b>NOT</b> revert back. This will most likely cause a regression and you will have to start all over again. This regression could also mean it will take longer for your child to feel in control next time around. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Sometimes its possible to increase the demands where you have studied your child's behaviour and tolerance levels and know that they can mange a slight increase. Use your experience of the child's behaviour to determine when you are able to increase non - instructed demands and when you shouldn’t.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">The more you understand your child's non - verbal behaviour, mannerisms, and their thought process the easier this whole strategy will become.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Please keep an eye out for the second part of this blog post series where I will guide you step by step to help reduce those demands and make some simple changes your language.</span></span></div>
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<span style="font-kerning: none;"><span style="color: #674ea7; font-family: "verdana" , sans-serif;"><b>Please remember THIS IS NOT YOUR FAULT.</b></span></span></div>
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<span style="-webkit-font-kerning: none;"><span style="font-family: "verdana" , sans-serif;">Please let me know if you’re going to give this a go? Does it all make sense? I am always happy to answer any questions you may have over on my <a href="https://www.facebook.com/LotsofLoveandAffection/" target="_blank">Facebook Page</a> or <a href="https://www.instagram.com/lotsofloveaffection/" target="_blank">Insta</a> so feel free to get in touch.</span></span></div>
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Anonymousnoreply@blogger.com2tag:blogger.com,1999:blog-7619949788469240816.post-65018778360613253382018-05-21T21:19:00.001+01:002018-05-21T21:19:21.212+01:00Are We Running Before We Can Walk When Teaching Social Skills<center style="text-align: justify;">
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<span style="color: black; font-family: Verdana, sans-serif; font-size: small;">This blog post has been playing around in my head for a long time now. I wanted to get it out to you way before this, but i needed to get this right. There are so many of us in the situation where our child’s speech and language skills are assessed and deemed appropriate for their age minus a few issues. Some of your children much like Lola can speak clearly, have a wide vocabulary and therefore only basic - or none in some circumstances - of speech and language therapy is provided. For Lola i always knew there was more to understand, yet without a competent professional who completely understood Lola and was able to think outside the box, using non-traditional methods of assessment we were stuck. Her profile was spiky, she had difficulties in some areas and was average in others. Her demand avoidance played a part in this also. Lola was diagnosed with Atypical Autism in 2014. In 2017 she was assessed by Dr Judy Eaton and subsequently diagnosed Autistic with a demand avoidant profile. (Pathological Demand Avoidance)</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;"><span style="color: black;">Lola had limited speech when she was two and half, making a few sounds, but her speech was mainly growling, screaming and grunting. She quickly caught up though, almost overnight she went from growling at people to singing Katy Perry’s ‘Roar’ - ironic right? - without the tiniest hint of difficulty.</span> <span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">It seemed that professionals thought as soon as she could speak it meant she understood too and so we found ourselves in a position where she was given basic Speech and Language Therapy delivered by a teaching Assistant. Is it any wonder that her skills in this area haven’t progressed over the last few years? <span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">I truly believed that we were missing something from the bigger picture and that it was down to her understanding, but i had no idea what it was or how we could help her. That all changed last month when i attended the PDA Conference organised by <a href="https://www.pdasociety.org.uk/" target="_blank">The PDA Society</a> who I will be eternally grateful to for continuing to raise awareness and acceptance and understanding of PDA.<span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">There were a few workshops that the delegates could choose from and I chose the SALT workshop by Libby Hill - Speech and Language Therapist and all round legend of a woman who completely smashed her presentation like a boss, with humour in abundance and the ability to keep the attention of god knows how many people for a whole hour, hanging onto her every word and enthralled by the new information that was being presented before them. She’s the type of woman you want to immediately make your best friend. (I think I just about managed to not actually ask her out loud) Although I did stalk her a bit on social media afterwards and was delighted when she accepted my friend request.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Anyway, her presentation wasn’t what you’d expect. It didn’t tell us how to teach our children and young people to socialise appropriately. Remember when you had that “light bulb moment” when reading the text on Pathological Demand Avoidance? You know, the one where you quite literally thought they were describing your child? Well I had my second one during Libby’s talk which made me so excited. Finally I had been given the last tool that I needed in my toolkit and everything finally made sense to me.</span></div>
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<span style="color: #a64d79; font-family: Verdana, sans-serif; font-size: large;"><b>“Social thinking is a user-friendly term for social cognition. Social thinking is required prior to the development of social skills”</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;"><b>Michelle Garcia-Winner</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Social thinking is crucial to the development of Social skills and therefore we have been teaching our children step two before they’ve had the opportunity to learn Step One, much like the phrase <i>“running before you can walk”</i></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Social Thinking or Social Cognition is having the ability to consider your own thoughts, emotions and intentions as well as those of others so that you have the ability to interpret that information in your mind - which could then be transferred to Step Two and your social skills. Your interactions with people can be developed once you have the ability to predict another persons intentions.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Its quite a mouthful isn’t it? Libby used a fantastic explanation with some useful visuals and a description of some people in a train station with natural social cognitive abilities and others who were impaired in that area and the ways in which they responded to different situations.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Libby said...</span></div>
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<span style="color: #674ea7; font-family: Verdana, sans-serif; font-size: small;">“when walking through a train station and you see someone coming towards you with a buggy, you’ll automatically glide to the left to allow the person with more difficult manoeuvring skills to pass you by, and then along comes an elderly person using a walking stick and you automatically glide to the right to allow the elderly person to walk on by”</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">It is a response from your brain that sends the correct messages to your body that gives you social cognition.<span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">However if a person has difficulty in the areas listed below then they are likely to experience <b>SOCIAL COGNITIVE CHALLENGES</b></span></div>
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<span style="background-color: #93c47d; font-family: Verdana, sans-serif; font-size: small;"><b>Executive Functioning</b></span></div>
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<span style="background-color: #ea9999; font-family: Verdana, sans-serif; font-size: small;"><b>Cognitive Flexibility</b></span></div>
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<span style="background-color: #ffd966; font-family: Verdana, sans-serif; font-size: small;"><b>Language Skills</b></span></div>
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<span style="background-color: #9fc5e8; font-family: Verdana, sans-serif; font-size: small;"><b>Sensory/Motor Difficulties</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Before we start to implement strategies for Social Interaction we need to work on these difficulties. So if it seems like your child has not made nay progress during their periods of Speech and Language Therapy then it may be worth you exploring these ideas first because if you’re anything like me, this is most definitely the key that we have been looking for to unlock Lola’s potential for improving her Social skills.<span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Libby then went on to describe a techniques used to enhance these skills that was completely new to me. It wasn’t a technique i was familiar with at all and yet it made so much sense.<span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;"><b>THE I-LAUGH MODEL - MICHELLE GARCIA WINNER.</b></span></div>
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<span style="color: black; font-family: Verdana, sans-serif; font-size: small;"><b>I<span class="Apple-converted-space"> </span><span style="background-color: #d5a6bd;">= INITIATION OF COMMUNICATION</span></b></span></div>
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<span style="color: black; font-family: Verdana, sans-serif; font-size: small;"><b>L <span style="background-color: #6fa8dc;">= LISTENING WITH EYES AND BRAIN</span><span class="Apple-converted-space"> </span></b></span></div>
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<span style="color: black; font-family: Verdana, sans-serif; font-size: small;"><b>A <span style="background-color: #ffd966;">= ABSTRACT AND INFERENTIAL LANGUAGE</span></b></span></div>
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<span style="color: black; font-family: Verdana, sans-serif; font-size: small;"><b>U <span style="background-color: #b6d7a8;">= UNDERSTANDING PERSPECTIVE</span></b></span></div>
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<span style="color: black; font-family: Verdana, sans-serif; font-size: small;"><b>G <span style="background-color: #f9cb9c;">= GESTALT PROCESSING: THE BIG PICTURE</span></b></span></div>
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<span style="color: black; font-family: Verdana, sans-serif; font-size: small;"><b>H <span style="background-color: #ea9999;">= HUMOR AND HUMAN RELATEDNESS</span></b></span></div>
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<span style="background-color: #d5a6bd; font-family: Verdana, sans-serif; font-size: small;"><b><span style="color: black;">I IS FOR = INITIATING</span> </b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">The initiation of communication is the ability to use language skills to get your message across. It is a difficulty to start or (initiate) something that is not routine. Being able to ask for help, or seeking clarification on something and executing a new task. The individual with Social Thinking difficulties can have very little difficulties when speaking to someone about his or her own topics of interests however, when asking for help, or asking for clarification on something they are confused about can be extremely challenging because their initiation of communication is impaired. These two skills (asking for help and understanding how to join a group for functional or personal reasons) when combined together can enhance a persons ability to succeed in the workplace, in education and in relationships. Being able to initiate communication is paramount to ones future success. Asking for help is a really difficult thing for children to do and when you add on this difficulty in social thinking it opens them up to more vulnerability with their peers, their own self esteem and their teachers.</span></div>
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<span style="background-color: #6fa8dc; font-family: Verdana, sans-serif; font-size: small;">L<span style="color: black;"><b> IS FOR = LISTENING WITH EYES AND BRAIN </b></span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Did you know that listening is more than just receiving auditory information. Using your eyes to listen means that your brain is receiving visual stimuli and messages and interpreting them into messages that can be heard, or as Libby Hill more accurately describes - “Listening is not all about processing but also about how we synchronise non-verbal communication skills to process and respond more succinctly to a message.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">So imagine you are speaking to someone and that person looks away seemingly distracted by something that they’ve seen and then looks back at you with disgust on their face, or amusement. Individuals without difficulties in Social Thinking are able to successfully interpret those non - verbal cues into a message that the the other person is relaying. A person without those difficulties will follow the other persons gaze, see the thing that is causing amusement or disgust and then react appropriately to the information that they’ve listened to with their eyes and brain.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;"><b style="background-color: #ffd966;">A IS FOR = ABSTRACT & INFERENTIAL LANGUAGE / COMMUNICATION </b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">There are lots of different types of abstract and inferential Language and communication that even i struggle sometimes when I can’t quite make sense of tone of voice and body language together with what someone is saying. When there is an impairment in understanding different types of communication then messages can get lost and/or misinterpreted causing confusion and frustration for the individual that needs to work really hard with these different types of language and communication.<span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Types of communication and Language that can cause these difficulties are:</span></div>
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<span style="color: black; font-family: Verdana, sans-serif; font-size: small;"><b style="background-color: #8e7cc3;">Metaphor</b></span></div>
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<span style="color: black; font-family: Verdana, sans-serif; font-size: small;"><b style="background-color: #a2c4c9;">Sarcasm</b></span></div>
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<span style="color: black; font-family: Verdana, sans-serif; font-size: small;"><b style="background-color: #ffe599;">’Slang’</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">So just going back slightly to the individual that struggles to initiate conversation or ask for help with meanings, and has difficulty listening with their eyes and brain, these types of language and communication are going to be extremely difficult for people to understand which can then be exacerbated by the difficulty to start a conversation explaining that they don’t understand = (INITIATION) Children with social and communication difficulties are often confused by ‘sarcasm’ and many Autistic adults are often describing their frustration of sarcasm and left wondering ‘what is the point’ ‘why don’t people just say what they mean?’<span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Are we being purposefully difficult by using idioms or sarcasm? Why do we seem to make communication so difficult that other people need to constantly interpret meanings by use of listening with eyes and brain to work out the actual message that is being sent.<span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">“It’s raining cats and dogs” is a relatively over used term for ‘Lots of rain’<span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Why don’t we just say what we mean? - “Its raining quite a lot today isn’t it?”</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Being able to understand this is incredibly complicated, yet many of us can understand the underlying meaning of abstract language but those with social thinking challenges battle daily with our complicated use of language. If you think about it, it is everywhere, and many are left wondering ‘What does it actually mean’ The slang today is different from yesterday. When i was growing up we used the ‘BAD” For awesome or (Good) and then 10 years later slang changed from ‘Bad’ to ‘Phat” I must admit i didn’t get this one! However another ten years later, i have a son who uses the word ’Sick’ How does one even try and understand the meaning of slang when it changes so randomly and frequently. I can completely understand why people would be confused. And it isn’t just in the spoken word that we use slang either, its prevalence on advertisements is astounding, which then creates the frustration of not understanding the meaning of adverts or wether something is a good deal or not.<span class="Apple-converted-space"> </span></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">The six steps to the I - LAUGH Model is quite complicated in itself to understand, The brain - for many people who do not have impairments will naturally jump from step 1 to step 6 very quickly. However not everyone is born with that natural ability and will need to be taught those skills in order to develop a good understanding of social skills and how to practice those for their future.</span></div>
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<span style="background-color: #b6d7a8; font-family: Verdana, sans-serif; font-size: small;">U IS FOR = UNDERSTANDING PERSPECTIVE </span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Understanding Perspective isn’t just one thing, its considering your own and others thoughts, Emotions, and personalities amongst other things which helps create the definition of perspective taking. Considering things like other peoples thoughts, emotions using prior knowledge and experiences and language based and physically coded intentions with regards to the specific situation. Confused? its a bit of a mouthful but simply put, To be able to UNDERSTAND someone else’s PERSPECTIVE you need to consider the thoughts, emotions and intentions of that person while also considering the specific situation simultaneously.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Which leads us to:</span></div>
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<span style="background-color: #f9cb9c; font-family: Verdana, sans-serif; font-size: small;">G IS FOR = GESTALT (GETTING THE BIGGER PICTURE)</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Now i struggle with this one, conveying this in my own words, remembering the talk and explaining this in a way that can help others understand is difficult, but overall this basically means putting everything together, gathering all those tiny pieces of information and collating them so that they mean something, so that you can respond, understand, take it all in, it helps you stay on track in conversations and intuitively understand the underlying concept. When reading something you need to be able to follow the concept instead of just gathering those tiny bits of information and collating them together. Conceptual processing and organisational skills often go hand in hand and weakness in one area is normally accompanied by a weakness in another area. You may find that people with those difficulties are more likely to struggle with completing homework projects where they need to relate one piece of written work with another piece of art work or numeracy.and it can greatly impact on the persons ability to formulate written expressions. I always described Stanley as so intelligent in mind, he was so clever and advanced but when he started school those skills didn’t come through, he was described as :behind” and he needed A LOT of help. He couldn’t get it out of his head and onto paper, and thats where his difficulties lay.</span></div>
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<span style="background-color: #ea9999; font-family: Verdana, sans-serif; font-size: small;">H IS FOR = HUMOR AND HUMOUR RELATEDNESS</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Humour for these beautiful minded people can be tricky, they can have a great sense of humour but will often miss the cues that enable them to participate successfully with others in social situations. Often some can have inappropriate sense of humour, timings, anxiety and being unable to judge another response can all impact on ones ability to convey their humour effectively.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">To compile this blog post Libby Hill from <span style="color: #6aa84f;"><a href="http://www.private-speech-therapy.co.uk/" target="_blank">Small Talk</a></span> kindly shared her slides that she'd prepared for the talk so that I could write this.</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Some books recommended by Libby Hill include - </span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Superflex and His Team Of Unthinkables</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">Inside Out: What Makes a Person with Social Cognitive Deficits Tick</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: small;">These can all be found here <a href="https://www.socialthinking.com/Search%20Results#q=books" target="_blank">Social Thinking.</a></span></div>
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Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-7619949788469240816.post-58095706813270881232018-03-15T21:01:00.000+00:002018-03-15T21:01:00.063+00:00Why You Shouldn't Wait To Change Your Autistic Child's School<center>
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<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">Three years ago I was told that Stanley would never cope in a mainstream environment when he transitions to a secondary placement. The day I heard those words actually broke my heart a little. Lola hadn't even been given a specialist placement at this time and already I was being told that another of my children would need specialist education. </span></span></div>
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<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">I had queried Stanley's progress for about a year and a half, and we were told he was fine. He wasn't behind and he was managing well. He didn't display any autistic features and had no attention problems. Stanley's mental health told me this was not the entire truth and after the school went through some issues with staffing and other Consultant Heads came through the school for short periods things started to change, and the reality was that actually he was THREE years below age related expectations and his results were actually changed to reflect that ONLY upon my request. He was also depressed and he was being bullied and had been asking me for two years to find him a new school. </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"> </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">I wish I'd have listened to him properly. I wish I would have delved deeper into his problems and paid more attention. </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">I will feel guilty for a long time for not listening to my own child. I should have been there for him and I wasn't. At the same time, Lola was my priority, and fighting the educational system for extra provision and schools for reasonable adjustments was becoming a full time job and I could not manage both things at the same time with a small baby. Lola was having intense, violent meltdowns at every school pick up and drop off and in hindsight I should have pulled her out too, however if I would have done that then we may not be where we are now. </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">Finally the day came when me and Stanley had both had enough, I cant quite remember what the breaking point was but I know that we had a week of complete upset and Stanley had started school refusing, his mental well being was deteriorating right before my eyes and the lively, intelligent, bright, happy, funny little man that I once knew was becoming a shell of his former self.</span></span></div>
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<b><span style="color: #351c75;"><span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">Empty, emotional, uncaring.</span></span></span></b></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">He was not himself at all. </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">On a Thursday evening I had phoned the Local Authority and had gotten him a place at another school for the following Monday start. He was so chuffed. I saw a little spark re-ignite and he genuinely smiled for about two days.</span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">For an autistic child, change of routine and structure, new faces and classes, and missing friend can be an anxiety inducing time. It can lead to new challenges, and fights and meltdowns. </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><b><span style="color: #351c75;">Not for him! He smashed it like a boss!</span></b> </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"> </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">He turned up to his new classroom and to his new friends in his new uniform, new hair cut and got stuck right in. He was so happy.</span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">But he was still a massive three years behind and I was so worried for him. Some may say a little over - anxious. I had to be, I had promised myself I would <b>NEVER</b> let him down again. As time went on I was concerned we were running out of time to get him secondary ready and in October 2017 I applied for an assessment of his needs - which was subsequently refused, he was making accelerated progress and they didn't see the need to assess. I was gutted. Obviously I appealed.</span></span></div>
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<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">His school were and still are amazing. They have made reasonable adjustments, and put so many other little extra provisions in place for him that he has progressed mentally, emotionally, and educationally. I was still scared for him though, secondary school is massive, there are so many extra transitions, new people, new friends, and teachers and different classrooms and books for each lesson. <b>How would he manage?</b> he has executive functioning difficulties and he is extremely disorganised. </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"> </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">As part of the mediation process the Local Authority agreed to an Educational Psychologist assessment. I have just received the report back and its fantastic. This little boy started Year 5 at the level of an emerging Year 3. His teachers have worked so hard with him that he has progressed to an Emerging Year 6 and in his Psychology Assessment where <b>his chronological age is 10Y 7M he has a numer reasoning skill of 13Y 3M.</b> How absolutley fantastic is that?</span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"> </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">This is without a doubt down to his placement, down to his teachers for not giving up and taking on a student in desperate need of help. It is down to him for soldiering through whatever life threw at him and not giving up. </span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">So if you ever had a moment where you thought about changing your autistic child's school placement, then <b>DO IT NOW.</b></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;">If your child has ever asked you to change schools, then don't ignore those pleas like i had. Act upon them. Dig deeper. Find out what is wrong and make changes, because if you done, then trust me, you<b> WILL</b> regret it.</span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: Verdana, sans-serif;"><b><span style="color: #351c75;">Stanley is finally secondary school ready and I have dropped the appeal against the LA. A weight has been lifted. I could not be more proud of my little boy than I am right now.</span></b></span></span></div>
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Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-7619949788469240816.post-51457322203863370172018-02-26T12:44:00.000+00:002018-03-12T20:06:14.424+00:00Chapter 6 - I was going out of my mind.<h2>
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<span style="font-size: xx-small;"><span style="color: #674ea7; font-family: "verdana" , sans-serif; font-size: small;"><b>A Journey into the Unknown</b></span></span></center>
</h2>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">Chapter
5 consisted of us being referred and discharged immediately from community
peadiatricians and made to jump through hoops, consisting of parenting courses.
My daughter was deems a child that was an extreme version of normal – who had
tiny traits of autism, which would eventually go away. After I had received the
report from this appointment I was so
disappointed I complained until we referred again for her hyper – mobility and
to have a thorough assessment of it with an expert. </span></span></span><br />
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<a href="https://1.bp.blogspot.com/-6M_0te_wSNM/WGLXr_o1aVI/AAAAAAAAAJk/EKtsnC4AEvoaumHMY3ipC3seUTg5HbDRgCEw/s1600/IMG_2799.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" src="https://1.bp.blogspot.com/-6M_0te_wSNM/WGLXr_o1aVI/AAAAAAAAAJk/EKtsnC4AEvoaumHMY3ipC3seUTg5HbDRgCEw/s1600/IMG_2799.JPG" /></span></a></div>
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<span style="color: #10131a; font-family: "verdana" , sans-serif; font-size: small;">Before
we get to the bit where Lola got to see someone for her hyper-mobility, we have
9 months to get through. This chapter is going to be about all three of my
little beauties as it's actually a key year. </span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">My youngest was a very poorly baby
who was always ill, I think in 3 months since she was born we had called out
two ambulances for her, one because of her temperature and breathing where she
was put on a nebuliser in the ambulance and another because she had tonsillitis
so badly that she had a febrile convulsion because of the temperature rising so
high. She was just like Lolly, her skin would be all motely and her hands, feet
and mouth would be blue, even her tongue.</span></span></span><br />
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<a href="https://1.bp.blogspot.com/-iEz2aUwiCIQ/WGLXoo3QgCI/AAAAAAAAAJk/N_7kUV2z7D0yH4V2ujkbTqmm-PMpDYK0wCEw/s1600/IMG_1387.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" src="https://1.bp.blogspot.com/-iEz2aUwiCIQ/WGLXoo3QgCI/AAAAAAAAAJk/N_7kUV2z7D0yH4V2ujkbTqmm-PMpDYK0wCEw/s1600/IMG_1387.jpg" /></span></a></div>
<span style="font-family: "verdana" , sans-serif;"><span style="font-family: verdana, sans-serif; font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a;"><br /></span></span></span>
<span style="font-size: small;"><span lang="EN-US" style="color: #10131a; font-family: Verdana, sans-serif;">In fact she was worse than Lolly, but
again I was used to this and so it didn't worry me too much, there would be no
warning for any of her illnesses, one minute she would be fine and the next she
was convulsing with a temp of 43c. I was so scared, and just like the time with
Lola choking I couldn't cope with seeing my baby passed out, I was so upset and
I knew I wasn't doing any good with her in my arms so I passed her to Kenny,
who brought her round. While I spoke to the 999 operator and packed her
hospital bag. It's weird isn't it because if it was any other child but my own
I would have been calm as anything and dealt with it appropriately.</span></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="color: #10131a; font-family: Verdana, sans-serif;"><span style="font-size: small;">This was number 2 on my most scariest
moments list After Lolly choking! I was distraught. Shaking, pale. She was only
tiny! What was happening to my children why could their tiny bodies</span><span style="font-size: small;"> not cope
with a cold, or any thing. My boy was a very healthy baby and had nothing more
than a common cold. I didn't know any other family who was in and out of
hospital with their children as much as me at that point. I felt like I lived
there. Lolly was so upset, she didn't understand, she thought that I wasn't
going to bring Connie back home and I just had to leave her knowing she was so
confused and upset, but my baby needed me, I had to leave her. Tonsillitis was
diagnosed and we were discharged. It wasn't long before we were back down
there, she had bronchiolitis, and whooping cough. She was practically foaming
at her mouth, it was very watery, her skin was pale, and dry and She was very,
very poorly. Was given some strong antibiotics and sent home. She picked up
immediately on these and was happy and healthy again. Not for long, though.</span></span><span style="font-family: "arial";"><o:p></o:p></span></span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">It
was Christmas soon of 2012 and we had booked a lodge in wales to spend
Christmas, much to the dismay of our family, but we needed a break, we needed
to get away without the worry of anyone else or the big get togethers over the
festive period. These were particularly hard for us as a family. Lola didn't
understand at all about birthdays and other special occasions. If you said
happy birthday to her she would repeat it back love her, and still does.</span></span></span></div>
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</span></span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">She
gets particularly anxious, lots of unstructured days, lots of visitors,
bringing presents and having dinner it confuses her. So we decided to go away,
a nice lodge with a hot tub in Wales. One whole week of relaxation and
hopefully some snow! </span></span></span></div>
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<span style="color: #10131a; font-family: "verdana" , sans-serif; font-size: small;">It
took us 8 hours to get there, Lola was an absolute nightmare, she was
screaming, setting the others off, Connie was only little and needed changing
and feeding often. Lola hated the car seat, hated the music, hated everything.
It was the worst journey in the world. In the end I had to pull over and swap
her into Kenny's van. She was not a happy girl, not even the promise of the hot
tub when we got there could persuade her to calm down. We were soon learning
that journeys with Lola were practically impossible. We weren't prepared, we
didn't know about distractions for her disabilities because at that time she
was just an "extreme version of normal" we weren't given any
strategies to help her or us, we just had to deal with it, get on with it,
punish her, make consequences for her behaviour, do her a reward chart, And
wait for a parenting course to help me be a good parent. Eventually we arrived
and unpacked after my car had broke down in the middle of nowhere with a
screaming hungry baby, and a screaming anxious toddler and It was amazing, kids
jumped straight in the hot tub, and we chilled with a well needed glass of wine
and prepared for Christmas.</span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">Connie
was poorly again and she had a cough and cold and high temperature. She also
came up in a rash! It was blanching though so it wasn't a worry. She got over
it quite quickly this time thank god!</span></span></span></div>
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</span></span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">It
rained the whole time we were there, we literally had to stay in and make do.
Christmas was quiet and peaceful and very relaxed.</span></span></span></div>
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</span></span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">Lola
didn't understand climate change Or couldn't feel certain temperatures she
would want to wear shorts in the winter if it was sunny and try and go out with
big coats on in summer if it was cloudy, It was a bit of a worry because once
she had her mind set on an outfit, she would be adamant she was wearing it, and
I swear nothing could change her mind. We did though in them days, we made her
change clothes but the repercussions weren't worth it, and our motto now is
"if it isn't harming her what's the point" if we went on holidays in
winter to the coast she would want to go swimming and could</span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">Not
understand she wasn't allowed in the sea. It was almost like she was saying why
are you bringing me to the sea of it's too cold for me to swim in? Logical
really for a child, but "normal" children would understand after it
being explained. No amount of explaining it to her would help her understand
and so we would just let her find out herself.</span></span></span></div>
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<a href="https://1.bp.blogspot.com/-AmjphrF7J4o/WGLapwcUmNI/AAAAAAAAAKA/iXiCTNN8zF4kYyOgaoEZgR2k_Ed-u1vzACLcB/s1600/IMG_2327.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" src="https://1.bp.blogspot.com/-AmjphrF7J4o/WGLapwcUmNI/AAAAAAAAAKA/iXiCTNN8zF4kYyOgaoEZgR2k_Ed-u1vzACLcB/s1600/IMG_2327.jpg" /></span></a></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">It
took us 2 1/2 hours to get home, big difference from 8 hours on the way there.
It was good to be back. But then the realisation of back to work and back to
school hit. I was also due to go back to work and needed childcare, so we hired
a nanny, she came and worked three days a week, taking the kids to school, and
picking them up and looking after Connie Mai at home. She would do the general
tidying up. Lola was very difficult for her. Our routine was hard because Lola
done odd pre school days so it was quite hard for her to get used to. She never
listened to the nanny and was just generally difficult. At this point, Stanley
had started regressing - academically he got left behind. He was in year 1. He
was fidgety, inattentive, and disruptive. He was the same at home. We said
before they were like chalk and cheese, and it was getting worse. We put it
down to me going to work. I hadn't worked at all since having him so maybe it
was just too big a change. His teachers in his class were changing all the time,
which didn't help, the whole way through year 1 he and the other children were
passed from pillar to post. He didn't cope well. His writing and phonics took a
dive, he couldn't read, would not do any work at home at all, and eventually I
stopped fighting with him about it. I refused to spend my couple of hours in
the evening with him getting stressed over reading and homework so we left it. </span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">At
home he was gaining independence and becoming disruptive and belligerent
Stanley withdrew further from me, not only did I have to spend practically 90%
of time with Lola but Connie was poorly, with all her infections, she also had
severe silent reflux, she got to the point where she would see the bottle and
cry! She was in agony every time she fed. I went to the doctors and got her
some special milk the same as what Connie was on after trying all the other
things they ask and it still didn't work, I worked out she was also lactose
intolerant so I went back and got one that was lactose free. She started
feeding again, and began to be a little happier, I had to eliminate all lactose
and dairy from her diet. She had a constant rash around her mouth. </span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #10131a; font-family: "verdana" , sans-serif;">So
with all of this going on, I guess he had to fend a little for himself, he
learned to make his own breakfast, get ready himself in the mornings and just
sit there watching TV whilst I ran around like a headless chicken. I was still
shouting, I didn't know what else to do. At this point it was a habit. I found
it hard to lower my voice and be reasonable I was majorly stressed out. I had
turned into that person who threatened to "call daddy" when the children
were being naughty and I hate that! I always said I would never do that, what's
that proving? It's just proving to them that you know they don't respect you or
listen to what you say. He used to listen once but not no more. I felt like he
hated me, I desperately wanted I bring him back to me but I didn't know where
to start, How do I do this? Where the hell am I going to find the time to make
a child love me? Well I tried, and I tried and I tried to be a good mummy, to
listen to him, show him attention but I just didn't have any patience or time or
motivation, I was in catch 22, again every time I went to bed I swore I would
be a better parent the next day, then I would spend all night up with Lola
screaming for what I thought and was told was nothing more than night terrors
and when It was time to get up I was exhausted, and had to get her dressed,
which took over half an hour, and the brush her teeth which took another half
an hour, with lots of screaming and growling and lashing out. So again I had no
time for Stan.</span></span></span></div>
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<a href="https://2.bp.blogspot.com/-q3XYFgRX-uM/WGLaKj8z1kI/AAAAAAAAAJ8/TxhGsRw0RAkptY_aWBVu0KgCFB-VMFHdwCLcB/s1600/IMG_0628.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" src="https://2.bp.blogspot.com/-q3XYFgRX-uM/WGLaKj8z1kI/AAAAAAAAAJ8/TxhGsRw0RAkptY_aWBVu0KgCFB-VMFHdwCLcB/s1600/IMG_0628.jpg" /></span></a></div>
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<span style="color: #10131a; font-family: "verdana" , sans-serif; font-size: small;">When
Stanley wanted to play with Lola she just annoyed him and made him moan or hurt
her, when she wanted to play with him he ignored her or wound her up. At this
point they were both struggling for control. Not one of them wanted to give in,
and Stanley was so stubborn to the point of even choosing to play on his own
instead of with her. He would walk away find something to do on his own. It was
a major problem. If he couldn't be in control then you couldn't play his games,
it had to be his games, and no one else was allowed to make something up or
have any ideas. I was going out of my mind, What was going on. I was once the
envy of other people. My children were so well behaved, when Lola was a baby
and Stanley a toddler they were great I could go anywhere. I had visitors all
the time. Not any more they were constant hard work. Will it ever get better? I
certainly hoped so.</span></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-30297615766133005102018-02-26T12:31:00.000+00:002018-03-09T13:10:13.079+00:00Why Would You Want To Label Your Child?<center>
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<b><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">I don’t actually, and ill tell you why - I
don’t like the term ‘label’ and how it is defined by the people who choose to
ask this question. Its like a dig, an
insult, its like they’re implying I want these ‘labels’ for selfish or
unorthodox reasons.</span></span></span></b></div>
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<span style="font-family: "verdana" , sans-serif;"><span lang="EN-US"></span><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">Autism is not a ‘label’ - My daughter
didn’t get a diagnosis so I could make her wear a signboard of her
difficulties. </span></span></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="color: #674ea7;"><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">Attention Deficit Hyperactivity Disorder is
not a ‘label’ - my daughter didn’t get a diagnosis so that I could excuse her
behaviors.</span></span></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
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<span style="color: #3d85c6;"><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">Anxiety is not a ‘label’ - My daughter
didn’t get a diagnosis to encourage people to be soft. </span></span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">I could go on forever right? Please insert
any diagnosis and any theory you may have and then listen carefully. These
disorders, disabilities, special needs, extra needs, or whichever other
definition you wish to use aren’t labels, they aren’t excuses, and parents like
me whose children have these diagnoses are sick of hearing people call them
labels. Professionals do it, friends do it, acquaintances do it without any
thought or feeling for how this statement comes across to the people it is
aimed at.</span></span></span></div>
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<span style="font-size: small;"><b><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">It is hurtful, it is judgmental, and it is completely
unjustified. </span></span></b></span></div>
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</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">People may say, ‘why bother having her
labeled when you are doing everything for her anyway’ or “why do you have to
label her when the school are giving the extra support’ and ‘what’s the point
in a label all it will do is hinder her in the future with prospective jobs or
relationships’ It will NOT hinder job prospects, and it will not hinder future relations, My child is who she is and I am proud of that, she will be proud of who she is too, because i will make sure of it. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">Having my child diagnosed (which I sought
out and fought for might I add) wasn’t for the benefit of myself; it was for
the benefit of my daughter and the future she rightly deserves. Having a diagnosis enabled her to have access
to other services she would not have received otherwise. Having a diagnosis
enabled me to help others understand her appropriately and begin to use the
correct strategies for her conditions. Having a diagnosis has enabled me to be
signposted to the correct support groups, and training courses that I wouldn’t otherwise
have been able to access. These ‘labels’ do not hinder my child’s future they
benefit it. These ‘labels’ are needed for support and understanding. Not having
a label will be used against you for obtaining further assessments and
referrals. Even though a diagnosis is not legally needed for obtaining support
and assessments, you WILL be told this because funding is critically low, and
as a diagnosis is proving more and more difficult to obtain therein lies the
problem of the merry-go-round service. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></b><div class="MsoNormal" style="text-align: justify;">
<b><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">Ever heard a teacher say: </span></span></span></b></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<i><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">“Im sorry, your child is not diagnosed so
we cant refer her for this assessment”</span></span></span></i></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;"><b>Or the Special Educational Needs Co-ordinator say:</b></span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<i><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">“im sorry to be able to have an educational
psychologist assess your child they need to have a diagnosis of X, Y, Z first”</span></span></span></i></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;"><b>Or a Headteacher say:</b></span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<i><span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">“I’m sorry we cannot make an application
for your child for an Education, Health and Care Plan, because she doesn’t have
a diagnosis”</span></span></span></i></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">This is NOT true!!!!! </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">But you see, who are we to question these professionals’
rules? On the start of my journey I was told all of these. All of them are NOT
true. Nothing is based on a child’s diagnosis, but to access the support and
assessments it seems we need them. Even though this isn’t what it states in the
SEN code of practice, it seems that that ‘Label’ is actually necessary. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;">Please don’t assume that I am labeling my
child for other reasons other than to benefit her future, Please don’t think
that these diagnoses are pointless, they are crucial for being able to access
the correct support, and referrals and other assessments needed to be able to
better our current situation and lifetime opportunities.</span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;"><br /></span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="font-family: "verdana" , sans-serif;"><b>Do you feel like this? Have you been in a similar position? Please share your experiences in the comments.</b></span></span></span></div>
<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">
<br />
</span></span><br />
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-34923490828778218402018-02-26T11:49:00.000+00:002018-03-12T20:12:47.463+00:00Autism Awareness - #YourJourneyMyBlog - The Cloth That Keeps My Child From Breaking<center>
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<span style="font-family: "verdana" , sans-serif;"><span lang="EN-US" style="color: #3170b9;">The month of April is best known for the explosion of Easter Bunnies, obscene amounts of chocolate as gifts for children and a magnificent feast to celebrate the resurrection of Christ. To many people April is Easter, They plan, they organise, many months in advance sometimes, Children have the time of their lives, gorging on chocolate, receiving gifts from extended family members, but to me, April is Autism Awareness month.</span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US"><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></span><br /></span>
</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #3170b9; font-family: "verdana" , sans-serif;">So to celebrate this, I am going to dedicate my blog for a whole month to families who wish to share their Autism Journey with you. Some of these people have autism themselves, some are autistic parents to autistic children. We have teachers with autistic students and even Bloggers who want share their journey with me, which I am very grateful for.</span></span></div>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">When
you break a bone doctors cover it in plaster to enable it to mend. When you cut
yourself a plaster helps you heal. When you are in pain we swallow medicine to
ease our hurt. </span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><span style="color: #a64d79;">But what can you give a child when their heart breaks?</span><o:p></o:p></span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span lang="EN-US"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #a64d79;"><br /></span></span></span>
</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-DVFHXkT7tHk/WPZmOr4WuRI/AAAAAAAAAW4/LpOrSisEGVYetMWneidI0UGSeaeQWmxTwCLcB/s1600/17965480_10210984735488459_125996685_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" src="https://3.bp.blogspot.com/-DVFHXkT7tHk/WPZmOr4WuRI/AAAAAAAAAW4/LpOrSisEGVYetMWneidI0UGSeaeQWmxTwCLcB/s1600/17965480_10210984735488459_125996685_n.jpg" /></span></a></div>
<span lang="EN-US"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #a64d79; font-family: "verdana" , sans-serif;"><br /></span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">My
daughter is 8 but already she has known fear, anxiety, stress and hurt. Someone
once told me it is like the world is just too much for her. In some ways they
are right. Lights are too bright, noise hurts her, people scare her, demands
stress her and even eating makes her incredibly anxious. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span lang="EN-US"><span style="color: #a64d79; font-family: "verdana" , sans-serif;">She
needs time alone. </span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">She needs physical closeness to mum. She needs consistent
routine and reassurance. She needs something in her hand to help her transition
from one thing to another. She needs encouragement constantly as her self
esteem and mental health plummet like a rock falling from a cliff. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><span style="color: #a64d79;">She
is fragile. She breaks easily.</span><o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">Yet
once thing has kept her from breaking for 8 years now. It is something that can
never be replaced. It has kept her going in tough times and comforted her
through tears. It is a steadfast in a word that keeps on changing. It is always
there, faithful, beautiful and reassuring. </span></span></div>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><span style="color: #a64d79;">It is as dear to her as the air she
breathes. </span><o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">A
little cloth. A bit of cotton that has been sewn together many times, taken to
so many places and lived life with my child every single day. <o:p></o:p></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><b>To
everyone else it is just a rag. To my daughter this cloth is wonderful. </b><o:p></o:p></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">She
will not eat unless 'clothie' is right beside her. She will not sleep without
it. It is hugged and kissed as she leaves for school and held to her face the
second she is home. <o:p></o:p></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">'Clothie'
is as precious and as fragile as Naomi herself. </span></span></div>
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<span lang="EN-US"><span style="color: #a64d79; font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><span style="color: #a64d79;">Both of them could so easily
break.</span><o:p></o:p></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">The
cloth has been battered, torn, sicked on and left behind a few times, exactly the
same way as my daughter has. Others treat her cloth with distain much as she herself
has felt too. As a tender, small, anxious child with autism she knows what it
feels like to look and feel different just like her unique cloth.<o:p></o:p></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">I
never thought I would learn to love a torn piece of muslin cloth so much as I
do. It is what keeps my child going and what keeps her smiling. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><b>Her
cloth is priceless for one reason:<o:p></o:p></b></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><b>It
is the cloth that keeps my child from breaking. </b><o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span lang="EN-US" style="font-family: "verdana" , sans-serif;"><span style="color: #a64d79; font-family: "verdana" , sans-serif;">Maybe
I need a 'clothie' too?</span><span style="font-family: "times";"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<span style="font-family: "verdana" , sans-serif;"><br /></span></center>
<span style="font-family: Verdana, sans-serif;"><div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
You can follow Miriam and her children on her blog page: </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="https://faithmummy.wordpress.com/2017/04/14/there-is-nothing-high-or-functioning-about-her-autism-at-all/?utm_content=buffer1adcd&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer">Faith Mummy</a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
You can also follow Miriam on Facebook too: </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="https://www.facebook.com/Faithmummy1/">Faith Mummy</a></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-36045082407005165852018-01-18T12:03:00.002+00:002018-03-09T13:11:28.033+00:00Pathological Demand Avoidance - The Control<center>
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<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-Jv1QelYPUBg/WmCKzVoBo_I/AAAAAAAAAew/euCNbXr9zrUk9kimjbVqCB28MjCx0VfugCEwYBhgL/s1600/26942994_10156433372232323_2118196819_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="598" data-original-width="960" src="https://3.bp.blogspot.com/-Jv1QelYPUBg/WmCKzVoBo_I/AAAAAAAAAew/euCNbXr9zrUk9kimjbVqCB28MjCx0VfugCEwYBhgL/s1600/26942994_10156433372232323_2118196819_n.jpg" /></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">My daughter was diagnosed with Pathological
Demand Avoidance in November 2017, although we always suspected she had a PDA
profile we decided to have a private assessment done to confirm in the hope
that more people would understand her and be able to help her grow to her
potential. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">Pathological Demand Avoidance is an autism
spectrum condition, which presents differently to other sub – types, so
differently in fact that the “normal” ASC - Autism Spectrum Condition strategies aren’t effective for a
child with PDA. This is a whole new ballgame, totally different strategies on a
whole new level that will completely question the parenting style that you
envisaged. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">Pathological Demand Avoidance is identified
by the persons anxiety driven need to be in control and to avoid
demands, whether they're from people or self-imposed demands. Simply, it’s a catch 22 situation that requires a lot of detective
work, a complete overhaul of your learnt language skills, and the ability to
connect with your child in such a way that you can predict their every thought
or feeling before they even know what it is. </span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: medium;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US"><br /></span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-CBqw8rXJk0o/WmCK0IwlopI/AAAAAAAAAek/IaaWkfw6LJgTTjASH594r6ElKa6EjR6JwCLcBGAs/s1600/27048372_10156433373272323_1853086654_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="997" data-original-width="1600" src="https://2.bp.blogspot.com/-CBqw8rXJk0o/WmCK0IwlopI/AAAAAAAAAek/IaaWkfw6LJgTTjASH594r6ElKa6EjR6JwCLcBGAs/s1600/27048372_10156433373272323_1853086654_o.jpg" /></a></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: medium;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: medium;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">Lola suffers with extreme anxiety when she
isn’t in control of ANY situation, which results in her becoming extremely
demand avoidant. Its tough for us as a family, but even more so for her and I
simply cannot imagine feeling so anxious that I wasn’t in control - that I
would avoid doing things to such an extent that I even miss out on the things I
enjoy most. Can you imagine that? </span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">It’s heartbreaking at its best and
devastating at its worst. </span></span></span></b></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">But there’s a problem that many families
like my own face, which leaves us unable to socialise, unable to participate in
typical family outings, like the park, or a restaurant, soft play centers or
swimming. Every kid loves doing those things right? So does Lola, but she has
many obstacles that she needs to overcome to be able to manage these things
without sabotaging it with her anxiety driven need for control. </span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">There are two
different types of things that I am talking about here, and one group of
controlling factors include things like:</span></span></span></b></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpFirst" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">What shall I wear?</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">How shall I do my hair?</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">I want to choose some of my
brother’s clothes but he wont let me.</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Which car seat will I sit in?</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Is mum or dad driving? </span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">I NEED mum to drive.</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Which place are we going to?</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">I NEED to choose the place.</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">I need to transition between:</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify;">
<br /></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="margin-left: 72pt; text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">1.<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span lang="EN-US">Bedroom and downstairs</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="margin-left: 72pt; text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">2.<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span lang="EN-US">Downstairs and the car</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="margin-left: 72pt; text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">3.<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span lang="EN-US">The car and the place</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="margin-left: 72pt; text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">4.<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span lang="EN-US">The place and the car</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="margin-left: 72pt; text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">5.<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span lang="EN-US">The car and the home</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="margin-left: 72pt; text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">6.<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span lang="EN-US">The downstairs and my bedroom.</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="margin-left: 72pt; text-align: justify;">
<br /></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpLast" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">I am time constricted and I
know I need to leave at a certain time but because I get distracted easily and
there is a time limit I’m struggling to even choose what to wear.</span></span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">All of these are perceived demands. She
knows in her head that we are going to ask her to do these things so that we
can make it to where we need to go. When she is too anxious we have to give her
that control to a certain extent to reduce those anxieties for her to be able
to take part in family outings and the things that she loves to do. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">However, with Lola, and I don’t know if
this true for any other children or adults with PDA, if she is given too much
control and not enough choices her anxiety will worsen. So we need to make sure
that her choices consist of no more than two things that she will prefer to do.
By giving her choices we know that she will make a decision that we will all
enjoy and she thinks she is in control. When she has made that decision and she
feels more in control her anxieties decrease and we are able to transition
relatively smoothly. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">I say relatively because there is also
another type of demand that she is unable to have control of.</span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">The Environment.</span></span></span></b></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">Now this can be a tricky one because when
you also factor in the sensory processing difficulties behaviours in the
environment can be a bit tricky. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoListParagraphCxSpFirst" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span><span lang="EN-US">Sounds</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Too many people</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Too many people talking</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">People sitting behind her – she
cannot see them but she knows they are there and she needs to be in a position
that she’s comfortable with because she cannot predict what will happen.</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Where we are seated.</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">How long we have to wait for a
table, or a swimming session.</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">How long our food will take.</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">The expectation that she needs
to stay seated.</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Can she use the toilet when she
wants to?</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Smells</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Loud music in restaurants</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Changing Traffic lights</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">Wearing a seat belt</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">The direction we need to take
and the traffic.</span></span></span></span></div>
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify; text-indent: -18pt;">
<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span><span lang="EN-US">The weather.</span></span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoListParagraphCxSpMiddle" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoListParagraphCxSpLast" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">So you can see that for a child with
extreme anxiety and demand avoidance that accessing the community can be quite
difficult. And when you add in the fact that PDA can quite easily be confused
with bad parenting/naughty child it makes situations even more complicated,
because quite often you will find that the parent also suffers with anxiety.
The people around us could lessen this kind of anxiety. Should we encounter
less ignorant or factually incorrectly opinionated people and more
understanding and aware people out there on our travels it would be so much
easier to enjoy life as a family. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-2FXTI3l-Nr0/WmCKzf3XgNI/AAAAAAAAAec/YCo6uHZk8wYLBG6c2A3Ubvh3DS9RV8bcACEwYBhgL/s1600/27042669_10156433373047323_7135626_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="626" data-original-width="960" src="https://2.bp.blogspot.com/-2FXTI3l-Nr0/WmCKzf3XgNI/AAAAAAAAAec/YCo6uHZk8wYLBG6c2A3Ubvh3DS9RV8bcACEwYBhgL/s1600/27042669_10156433373047323_7135626_n.jpg" /></a></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: center;">
<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">More often than not it is this factor that
keeps us isolated and lonely because it exacerbates the child’s anxiety.</span></span></span></b></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">Lola has always been very controlling. I
had my own personal “light-bulb moment” when she was four and a half years old,
however she had this ability to lull us into a false sense of security every so
often that made us question our belief that she was even autistic. I remember
one year, just before she was diagnosed with Atypical Autism and the ten weeks
leading up to that assessment where we were completely stumped. She was calm,
and adorable, and her behaviour was quite literally perfect. The sudden crash of
anxiety brought us to a surprising reality check. The unpredictability of her
behaviour was exhausting. As a whole family we were quite literally treading on
eggshells and she could explode at any given time. Normally in the home or the
car after school but always away from prying eyes. Which made it extremely difficult
for people to understand or believe even. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">Given the fact that many professionals
believed she was just naughty, I was constantly questioning myself and so this
made it really difficult for me and the family to adopt a consistent, demand
free approach that would help reduce her anxiety levels. We were in limbo and
it was difficult. </span></span></span></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US">Had we been trusted and believed from the
very first time that I questioned her behaviour we would be in a very different
place now. I believe that this is just the beginning for Lola and the fact that
she is in a fantastic placement with a fully supportive teacher who is pro
active in learning all about Pathological Demand Avoidance means that we can
finally start working with her so that she can finally start to enjoy her life
and learn all about society. So please if you are reading this and there are
children who you’ve categorized as naughty and rude, remember that every behaviour
is communication and some children like my little beautiful Lola expresses
communication differently and sometimes negatively but she isn’t naughty. She isn’t
rude, or doing things on purpose she just need a bit of help to reduce that
anxiety so that she can control her behaviours better.</span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-JH90Iu975nQ/WmCKzc33mDI/AAAAAAAAAew/GZXZLQkgwfovqAejleNlQteaf0OZ2iLaACEwYBhgL/s1600/27016474_10156433373317323_1593413442_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="997" data-original-width="1600" src="https://2.bp.blogspot.com/-JH90Iu975nQ/WmCKzc33mDI/AAAAAAAAAew/GZXZLQkgwfovqAejleNlQteaf0OZ2iLaACEwYBhgL/s1600/27016474_10156433373317323_1593413442_o.jpg" /></a></div>
<div class="MsoNormal" style="text-align: justify;">
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><div class="MsoNormal" style="text-align: justify;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span lang="EN-US"><b>We had Lola’s private assessment completed
by Dr Judy Eaton from <a href="https://help4psychology.co.uk/" target="_blank">Help for Psychology</a> (whom I share a last name with) and I regularly use the <a href="https://www.pdasociety.org.uk/what-is-PDA" target="_blank">The PDA society</a> website for up to date information, and of course not forgetting the lovely Julia, who is an adult diagnosed with PDA for her amazing images that she creates for her own website <a href="https://memyselfandpda.com/" target="_blank">Me, Myself and PDA.</a></b> </span></span></span></div>
<br />
<img nopin="nopin" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK9qwC4ljFkXGRJc64E57UqWg1wB30ErIV7_x4bo1DUZwTTELWzFnxUrD4BBRnUA_xDcfPhANmEag57q_EReKyTjrBJ0sA04T13swWz78KoWnbgs32suJ2KUXAEzWOOwKNqY1fLsBZfZoR/s1600/LOLAsig2.jpg" />
</center>
Anonymousnoreply@blogger.com2tag:blogger.com,1999:blog-7619949788469240816.post-21016703317156035892017-11-05T19:22:00.001+00:002018-03-09T13:11:50.730+00:00Marvellous Monday - Talking without words: Communication and Autism<center>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>Kieran Rose Bio</b></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i>A lifelong campaigner for Autistic rights, Kieran Rose has turned his passion for writing to good use, focusing on Advocacy and Acceptance for Autistic and Neurodiverse people, with his blog <a dir="ltr" href="http://www.theautisticadvocate.com/" rel="noopener noreferrer" target="_blank">www.theautisticadvocate.com</a></i></span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i>The freedom for Autistic people to speak for themselves and be heard is paramount for Kieran, mostly due to the fact that he has spent his whole life immersed in Autistic life and culture with Autism diagnoses for himself, much of his family growing up and now two Autistic children of his own. </i></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i>Kieran lives in Durham, England, with his wife, Michelle, where they run their Marketing Consultancy: <a dir="ltr" href="http://www.custardandbear.com/" rel="noopener noreferrer" target="_blank">www.custardandbear.com</a> (With a little help from their three children, Quinn, Albie and Olivia). The whole family all live in a happy bubble of routine, Sensory overwhelm and underwhelm.</i></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">When Jodie asked me to write an article on Communication and what, growing up, would have helped me, I kind of gulped. If you’ve read my Blog, you’ll notice I talk in the abstract often and include very little detail about myself. That, I think is related to the trauma and abuse I received as a child. Most of it was unintentional, some of it was done with love, but all of it is relatable to the experiences of Autistic kids all over the world and throughout history. We are not understood, so therefore Allistics (Non-Autistics), think it’s acceptable to try to mould us into what they would deem as ‘normal’ children and don’t realise that it’s unacceptable to do this and even harmful.</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">So writing about this stuff is an extremely difficult thing to do, which is why I’ve avoided it.</span></div>
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<span style="font-size: small;"><span style="color: #a64d79; font-family: "verdana" , sans-serif;">So, thanks a bunch Jodie!</span><span style="font-family: "verdana" , sans-serif;"> (Oopsie)</span></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>Seriously, thank you though, you’ve kind of unwittingly pushed me into writing stuff I need to write about and I think others need to read:</b></span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: small;">From the age of around 4 or 5, I remember dragging a chair from my bedroom, across the landing and standing on it, looking out the window onto the street below.</span></div>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">The house I lived in was on a row of houses called a crescent but it was more like a giant oval roundabout with houses on the inside and houses on the outside. It was a safe place to play, like a mini estate, with only the people who lived their driving round the one way system. </span><span style="font-family: "verdana" , sans-serif;">So, as you can imagine, there were a lot of kids playing on it. There were bikes and skateboards strewn everywhere, cricket, tennis, football matches, giant games of tag, hopscotch, skipping ropes. A car entered the crescent and everything got picked up and dumped on the verge, then brought straight back into the road once the car had passed.</span></span></div>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">All weathers these kids were out there, jumping in the giant puddles in the Spring rains, running around in shorts when the sun blazed. </span><span style="font-family: "verdana" , sans-serif;">And all weathers I watched them. Stood on my chair and studied the ebbs and flows of groups of children that ran and ran and that looked like flocks of birds, or a school of fish, the unspoken unanimous movement as they gathered their things out of the path of an oncoming car and then flooded back out in to the road when it rolled on.</span></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">I ached for them to knock for me, to lure me into this bedazzling world of movement and noise I watched unfolding before me every day and, they often did. I would watch them walk onto our drive and my heart would start to pound and hammer in my chest, my hands would involuntarily curl into tight fists, my fingertips, with nails bitten to the quick, pressed hard into my sweaty palms and I would sink onto the chair, knees up, as small as possible. </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">I’d hear the knock on the door, the noise reverberating, echoing around inside my head. My thoughts frozen in that cavernous space so usually filled with rumbling gears and constant considerations and memory, allowing the knock to bounce around getting louder and louder until it matched the thumping of my heart and two became one, a physical BANG, BANG, BANG.</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">My Mum would answer the door, there’d be a muttering that I’d be unable to understand and make sense of over the noise, the constant drumming and then she’d appear at the foot of the stairs, looking up at me huddled tight on this chair, rocking ever so slightly. </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">The same line every time, rote and repetition “Do you want to go out and play?”</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: small;">Crying “YES, YES, YES!” with the roar of a crowd inside my skull, I’d give a barely perceptible shake of my head. She’d look disappointed and vanish. More mutterings and the door would close. The child would return to its dance through the streets and I would uncurl slowly, slide from the chair and disappear into my room. Shell-shocked, exhausted and broken hearted.</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">This was me at the age of 6, 7, 8, 9, onwards and onwards. I wanted to play with them. I was desperate to play with them, but doing so hurt. I tried to join in the games at school and got lost amidst unspoken rules or rules that made no sense, were illogical and mindless, that changed minute by minute and everyone seemed to know how and why and me? There was I, lost in a sea of explosive noise and blurring movement, my brain, usually charging a hundred miles an hour, slowed to a crawl, with no ability to react. </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">The only thing that got me through was my ability to run. I was fast. Tag mad sense, Tag I could deal with. You ran and ran and ran, you chased and caught or were caught. But then the one who didn’t want to be caught, who claimed repeatedly that you missed them, vehemently and adamantly. But you didn’t, you touched them! You tried to explain but they took his side. </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>The unjustness. The unfairness.</b></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">Football made sense. You ran with the ball, kicked it and scored. But then the ball didn’t cross the line, or you were fouled because you were too fast to tackle but nobody else saw it. </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>The unjustness. The unfairness.</b></span></div>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">So… Easier to stay apart, to watch and idle, to shut out the noise and focus on the patterns in the leaves as they move in the breeze, or find a ‘quiet’ corner and lose yourself in your own head, a world of softness and warmth, where It’s safe and you can do what you want. </span><span style="font-family: "verdana" , sans-serif;">This was Primary school. Then there was Senior School. </span></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">A huge hulking mass of a building with a thousand rooms and tight corridors where every 55 minutes two thousand pupils exploded out into them, in an eruption of screams and shouts and pushing and barging and touching. </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">A place where if you weren’t part of one group, or another, if you didn’t quite fit, you were ostracised, called out, cornered and picked on.</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">A place where people talk at a thousand miles an hour, where you’re expected to keep up and learn and understanding, except there is nobody teaching you, nobody explains, so all you can do is watch and try to copy. You get it wrong, you pay for it, you go back and watch again. This is how you learn to be normal, this is how you learn to fit in.</span></div>
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<span style="color: #3d85c6; font-family: "verdana" , sans-serif; font-size: small;">“Observe. Mimic. Fail. Punishment. Repeat.”</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">A constant, unspoken, subconscious mantra in your mind, protecting itself at all costs and forcing this transition,</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">This act.</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">This mask…</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">That’s what it really is, you’re becoming an actor, you slip on a mask. Your stims, your movements become conscious things, you control them. Your intrusive constant thoughts and process, you compartmentalise them and focus on what is going on. You hold your script in your mind, of what to say and do, how to respond, what is acceptable and what is not and you force yourself to do this, 24 hours a day and, eventually, you aren’t you anymore. Instead, you’re this constantly exhausted shadow, hiding in the light, you to everyone else, but inwardly screaming and crying because the lights, the noise, the sensations, the touches, the movement; it’s too much, it’s all too much and then the mask slips, a little bit of you peeps through the crack and someone sees, someone notices a physical movement, or you say something inappropriate, or you start to withdraw and isolate yourself. People see who you are and don’t like it, because its different, its alien to them.</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">This communication stuff is a bitch. Far easier to just say what you mean, and talk about nothing if there is nothing to talk about. Far easier to hide from a society that isn’t for us and blatantly doesn’t want us. A society which expects us to be something or someone we are not. Far easier to hide from a world that doesn’t recognise our talents, but only sees our weakness. And calls it a weakness only because it’s different to what it is used to.</span></div>
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<span style="color: #45818e; font-family: "verdana" , sans-serif; font-size: small;">What would have helped me? </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">Honestly, part of me wants to say to be left the hell alone. But that isn’t useful. What would have helped would have been someone sitting down with me, explaining things to me, giving me real working examples, stepping into games with me and modelling, allowing me to shadow. Explaining that other people communicate in a silent way through their bodies and that I just can’t see it, so it’s ok to say that and be honest about it and to expect understanding in return. Telling me that it’s ok to be overwhelmed, its ok to have to retreat into my shell, but also someone to tell the other kids that and the parents and society at large. </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i><b>I needed someone to say, it’s ok to be me. </b></i></span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: small;">I read a quote the other day which went something like:</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i>“The difference between Autism Awareness and Autism Acceptance is that: Awareness is acknowledging something’s existence and Acceptance is giving a shit about it.”</i></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">I’m sure, everyone reading this blog is one of those people. I’m sure all of you are people who don’t take on a mantle of how hard your life is because of your Autistic child, but think how hard life is FOR you Autistic child, because accepting your child’s differences put you in a position to make life easier for your child. This is when you become innovative and personalise the way you communicate with them so it meets their needs. Then this personalisation is absorbed and put back out by the child. You help them find their path by listening to them, their needs.</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">You don’t need to cure them or replace their behaviours, you need to accept that some things need to be done differently, then your child will give you what you need.</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">You’re already halfway there: You avoid the shops because they’re busy and loud. But your kid can’t go through life without ever going to the shops. So you visit them when they are shut and stand outside, so they know how they look. You walk past the shops when they are busy so your child gets used to the movement and can glance in to see the colours. You give them ear defenders or headphones to cut out the noise. You give them their favourite stim toys for comfort. You introduce them slowly. The same with everything you do with them. </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">All of this, what most Neurotypicals do not realise, is communication, just in a different language. You’re talking to your child without moving your lips, modelling the fact that you are looking for a way to make them comfortable and give them a little control. This is communication an Autistic child understands. It is simple and clear: </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>You are safe. They are safe. This is safe.</b></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">That is a fantastic base upon which to build.</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">From youth to adult we are given mixed messages by society. We are told that differences are something to be celebrated and then we go to war over religion. That different is good and then we are sat in identical classrooms in identical clothing, taught identical things and punished when we don’t fit inside that box. That everybody should be different because the world would be a boring place otherwise. Then we mock people who dress strangely to us, or dye their hair or stick rings through their noses.</span></div>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Society doesn’t want us to be different. Society is built to progress and someone who doesn’t fit into a narrow range of what provides progress is unproductive, therefore defective, therefore wrong. </span><span style="font-family: "verdana" , sans-serif;">Autism is unproductive, Autism inhibits progression. Autism forces society to stop and think and communicate in a different way, which slows things down. Autism is defective. Autism is wrong.</span></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i><b>Except it isn’t. </b></i></span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: small;">Different isn’t wrong, different is what society fears and what society fears drives it and us forward. Different has raised us from picking at berries while hanging in a tree to a race of creatures taking their first steps into space. Different is what makes Humanity so amazing.</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">Communication is the driver behind that success and a difference in communication is one of the major barriers between the Autistic and Neurotypical worlds. </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">It’s about time that the bridge between those worlds isn’t built on forcing one to be like the other, but accepting the differences and working on how to connect the two.</span></div>
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Anonymousnoreply@blogger.com2tag:blogger.com,1999:blog-7619949788469240816.post-23094021769856927632017-10-09T09:30:00.000+01:002018-03-09T13:12:30.438+00:00Marvellous Monday - An Interview With Kate* & Little Miss E - PDA<center>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><b><br />Welcome to my new series - Marvellous Monday's. I will be interviewing people who have a direct connection to someone who is autistic, or is autistic themselves. I am excited to showcase some positive experiences of carers and parents. There are many difficulties and challenges that we face when someone in the family is autistic, and those little achievements of success are often overlooked because of the extensive caring duties and severe anxiety that some families face. My aim is to publish as many interviews as i can, each week on a Monday morning so that after the busy weekend of caring and the daunting week looming ahead has a positive beginning. Something for you to read, whilst you take you first breather and have your first hot cup of tea or coffer in days. I want to share the happiness and joyful moments of many families, children and adults with the hope that it can help you as a family hold onto that thought that 'It can only get better' </b></span></span></center>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Good Morning, thank you so much for taking the time to take part in my regular Monday Morning series, hopefully we can help everyone start the week with some positivity and an uplift. We all know how challenging and exhausting the mornings are especially if the children are suffering with back to school anxiety.<br /><br />I for one, would like something joyful to read, as we struggle on a regular basis here. If you have followed our journey, you will know that Lola really doesn’t cope well in the mornings and Connie –Mai is finding it increasingly difficult to become accustomed to leaving me at the school gates. </span></span><br />
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">What a great way to start the week, by sharing all those positives, some tips for the difficult times and telling us a bit about your family and those massive milestones you’ve reached that you didn’t think possible?</span></span><br />
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<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">So can you tell me a little about yourself and you family and the connection that you have to Autism?</span></span></b><br />
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<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">We have one amazing daughter who is 6yrs old. We took her for a private assessment early this year and she was diagnosed as we believed she would be, with ASD (Autistic Spectrum Disorder) with a PDA (Pathological Demand Avoidance) profile.</span></span></span><br />
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<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">She shows many classic 'Aspie' Girl traits and also a very high level of demand avoidance as you'd expect with PDA. </span></span><br /><br /><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">We are lucky to have a very supportive family. I have family members who are Autistic but we didn't know anything about PDA until researching Autistic traits combined with a passion for role-play, and PDA showed up.</span></span></span><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"> </span></span><br />
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<i><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Its so different isn't it? I had the "Light-bulb Moment" commonly described by parents of children who fit the PDA profile.</span></span></i><br />
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<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">So, tell me a little about how you manage this positively?</span></span></b><br />
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<span style="color: #a64d79;"><br /><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Our daughter has helped us look at everything through a different lens. We live differently totally on purpose and take things very slowly to make life as inclusive for her as possible. </span></span><br /><br /><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Dealing with demand avoidance daily benefits from extreme flexibility, acceptance, and patience from everyone. When Miss E gets overwhelmed she needs time to rest and reset - a lot of time sometimes! We follow her lead as she is an only child which is a very different dynamic to managing with siblings and their needs.</span></span><br /><br /><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">We know she is always doing her best and if things are challenging for her at times we just hope we can help her stay full of confidence in who she is which is awesome, funny, self assured, tuned in to her needs, focused, interested, full of beautiful smiles and cuddles, and so much more!</span></span></span><br />
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><i>It’s definitely exhausting having to remember all of these strategies and positive communication to keep anxiety and those shutdowns at bay. You sound like you really have it worked out, like you say though, its a very different dynamic when you have multiple children and one is trying to cope with having such extreme demand avoidance. But equally its still very very challenging.</i> </span></span><br />
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<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">We are really mindful of her triggers including sensory stimulus, demand avoidance plus social & communication challenges and support her the best we can in making her environment and life circumstances the best we know how. </span></span></span><br />
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<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">I believe the best thing I can do often is take care of me and deal with the things that trigger me so I can can hold a calm space for Miss E when she needs it. </span></span></span><br />
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<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">What are your three top tips for someone struggling to deal with the morning routine and keeping everyone happy? – I for sure could do with some extra ‘Go to’s’ up my sleeve for the mornings.</span></span></b><br />
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<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">We don't really have a morning routine as we home educate and always have chosen that. Our beautiful girl wakes around the same time each day but according to her natural rhythms. She isn't often very hungry and usually wants to play a while before she's ready to eat. I'm always starving, so I prepare something the night before ready for me to grab when I get up. </span></span></span><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="color: #a64d79;">She chooses her own clothes and gets dressed when she wakes up out of choice. We brush her teeth anytime during the morning and sometimes in the afternoon when she feels able. We have very few demands.</span></span></span><br />
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<i><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">That just sounds absolutely perfect for a child diagnosed with PDA, I really think Lola would benefit from much the same. She is so much more relaxed at the weekend when she wakes up.</span></span></i></div>
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<i><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">So its Monday morning and hopefully the readers have grabbed a cuppa, or a coffee if that’s your thing, and are chilling out for a while, de-stressing, re-grouping and reading this wonderful interview about family life with Little Miss E and as shes one of our anonymous interviewees - Here is her mascot!</span></span></i><br />
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<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Little Miss E is clearly really benefiting from your awesome parenting techniques, tell us those bits about E that make your heart smile, or your stomach flip with joy? The things that on a “normal” level are overlooked into everyday life, but for families like yours and mine are amazing achievements?</span></span></b></div>
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<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">I love seeing how much her self awareness grows each year. </span></span></span><b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"> </span></span></b><br />
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<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">What do you find most Joyful about E?</span></span></b><br />
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<li><span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Hearing her sing and seeing her dance makes me grin from ear to ear every time.</span></span><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"> </span></span></span></li>
<li><span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">She puts her arm around my shoulders and cuddles me. </span></span><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"> </span></span></span></li>
<li><span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">she chats away with such ease and confidence to people in shops and other venues. </span></span></span></li>
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<i><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">What an amazing little family that you have, I feel so honored that you are sharing all of this with my readers and I. </span></span></i><br />
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<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Its really important for carers of autistic children to take some time to re charge batteries, and look after themselves, the reality of this makes it quite difficult though so can you share some tips of when and how you recuperate?</span></span></b><br />
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<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">I'm a holistic practitioner so I use relaxation tools like EFT, Reiki, and meditation for myself everyday & I love a good soak in a bath with Epsom Salts!</span></span></span><br />
<span style="color: #a64d79;"><br /><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">I get so much from connecting with other parents walking a similar path through the amazing Facebook groups run with so much love out there. We feel so lucky to be raising our daughter at a time where there is so much information and support for parents on PDA and such an astounding PDA online community building all the time. </span></span></span><br />
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<i><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Similarly its important for the child to be able to take some time and reflect, process their day and relieve all of their pent up anxiety and sensory overloads, so does E have any successful techniques or aids that they use that you can share? Lola Loves to colour so when she is struggling we always offer her books and pens as a first distraction. </span></span></i><br />
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<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Because Miss E is at home she chooses what she wants to do when. She has a favourite sofa and a blanket she loves to get cosy in for a rest.</span></span><br /><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">She loves using the iPad when she wants to just chill out. If we are out and about she will use ear defenders and her buggy to escape the sensory overwhelm. </span></span></span><br />
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<i><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">I find that its so important to share these ideas with other parents because although most of us are aware of them, some of them can be forgotten, and just that little reminder can change a period of negativity to one of positive outcomes for both parent and child, so thanks so much for sharing you wealth of knowledge with us, I am sure that many parents are going to really benefit from it.</span></span></i><br />
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<b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Finally we all want to know about the biggest milestone that you or E has accomplished in recent months. </span></span></b><br />
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<span style="color: #a64d79;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">We just love see her growing in self awareness all the time!</span></span></span><br />
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<span style="color: #674ea7;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">And on that note, I hope you have a Marvellous week and that this interview has helped benefit you and family, with techniques and ideas, or even just given your Monday morning a bit of a cheery start.</span></span><br /><br /><br /><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Thank you to Kate* for answering my questions and thank you to those of you who have taken the time to read and share this to help many families start that all important week off in high spirits.</span></span></span><br />
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-8879807654662412082017-10-02T09:00:00.000+01:002018-03-09T13:12:51.144+00:00Marvellous Monday - An Interview With Lynne<center>
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<i><span style="font-family: "verdana" , sans-serif; font-size: small;"></span></i><b><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Welcome to my new series - Marvellous Monday's. I will be interviewing people who have a direct connection to someone who is autistic, or is autistic themselves. I am excited to showcase some positive experiences of carers and parents. There are many difficulties and challenges that we face when someone in the family is autistic, and those little achievements of success are often overlooked because of the extensive caring duties and severe anxiety that some families face. My aim is to publish as many interviews as i can, each week on a Monday morning so that after the busy weekend of caring and the daunting week looming ahead has a positive beginning. Something for you to read, whilst you take you first breather and have your first hot cup of tea or coffer in days. I want to share the happiness and joyful moments of many families, children and adults with the hope that it can help you as a family hold onto that thought that 'It can only get bette</span></span><span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;">r'</span></span></b></div>
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<i><span style="font-family: "verdana" , sans-serif; font-size: small;">Good Morning, thank you so much for taking the time to take part in my regular Monday Morning series. Hopefully we can help everyone start the week with some positivity and an uplift. We all know how awful and exhausting the mornings are especially if the children are suffering with back to school anxiety.<o:p></o:p></span></i></div>
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<i><span style="font-family: "verdana" , sans-serif; font-size: small;">I for one, would like something joyful to read, as we struggle on a regular basis here. If you have followed our journey, you will know that Lola really doesn’t cope well in the mornings and Connie –Mai is finding it increasingly difficult to become accustomed to leaving me at the school gates.<o:p></o:p></span></i></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i>What a great way to start the week, by sharing all those positives, some tips for the difficult times and telling us a bit about your family and those massive milestones you’ve reached that you didn’t think possible?</i><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>So can you tell me a little about yourself and you family and the connection that you have to Autism?</b><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">My husband and I have 4 children. Dylan (18), Sarah (6), Marcus (4) and Lawrence (2). Marcus was diagnosed with autism 3 days after his second birthday while I was pregnant with his younger brother. My husband and I recently did a role swap. I got a relatively stressless clerical job and he gave up his very stressful, management job in Telecommunications. Our teenager (who still lives at home) is a full time student.</span></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i>Wow – It sounds like you have your hands full, I imagine it can be pretty difficult at times, Can you tell us a little more about how you manage things at home positively?</i><o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">I suppose we do things to suit Marcus. We found ourselves saying “No, no, no” so we removed everything that was negative. For example, He is an exceptional climber. So we got rid of the dinner table and chairs. We put our sofa against the wall and placed a very strong side table at the side. This created a safe climbing area and we encouraged it. We made our living room a YES room. This made our day-to-day living more durable - Especially during the toddler stage.<o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">We are definitely pro-active parents and are constantly thinking ahead. We are constantly risk assessing and tend to stick to places/times we know to make any venture out the house enjoyable for parent and child.<o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">Sticking to our strict routine is key to a peaceful day. We have tweaked our routine to suit the whole family. Each change to routine now has a natural flow to it. They are subtle and don't have a huge impact now. Our son is non-verbal but he has signs, gestures and squeals that tip us off when he is starting to struggle.<o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">We have found our own stresses come from fighting against him. Trying to get him to do something he clearly doesn’t want to do. It's good for his development to have his boundaries pushed a little in order for him to progress. This is only manageable if both parent and child are calm. We evaluate things afterwards to see what went wrong and discuss ways to push further if it went right. Every negative can be turned into a positive learning curve.<o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">My husband and I both agree it's gutting when we can't all go to an event (family wedding, school function), but one of us has to wander around with Marcus or simply stay at home with him. But once you accept those limitations life gets easier.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i><span style="color: #a64d79;">It’s definitely exhausting having to remember all of these strategies and positive communication to keep anxiety and those shutdowns at bay. Your YES parenting seems simple yet so effective. Its great that you and the whole family are working on the same page that really helps.</span></i><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>What are your three top tips for someone struggling to deal with the morning routine and keeping everyone happy? – I for sure could do with some extra ‘Go to’s’ up my sleeve for the mornings.</b><o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">Routine, routine, routine! Our lot can wake up any time between 5.30am and 6.30am<o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">7am Coco pops for cereal. Only cbeebies on TV. (we arrange the routine in line with programs)<o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">7.30am Kids get dressed at the same time every day. But no socks or shoes until it's time to leave. He will just take them off!<o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">8.00am Toast (usually stolen from parents)<o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">8.30am Coat, socks, shoes and restraint straps on.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><span style="color: #a64d79;">We have a visual time table which helps too.</span><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i>I also have a very strict routine, they fight against it continually but it definitely benefits them, as if they deviate from the routine it all ends up in chaos. </i></span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i>Thank you so much for sharing. So its Monday morning and hopefully the readers have grabbed a cuppa, or a coffee if that’s your thing, and are chilling out for a while, de-stressing, re-grouping and reading this wonderful interview about family life with Lynne and her beautiful family. Isnt Marcus gorgeous. </i><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>Marcus is clearly really benefitting from your awesome parenting techniques, tell us those bits about Marcus that make your heart smile, or your stomach flip with joy? The things that on a “normal” level are overlooked into everyday life, but for families like yours and mine are amazing achievements?</b><span style="color: #a64d79;"><o:p></o:p></span></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">Marcus has recently starting ‘giving Five’! He never clapped his hands until last year so these are huge milestones for us.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><span style="color: #a64d79;">The biggest achievement he has done is <b>POTTY TRAINING!</b> After going to the bathroom with dad for weeks and being fascinated by the ‘flowing water’ and then the excitement of the toilet flushing. He decided that that’s where it goes. The nappy was off! It was truly amazing at the age of 4. He will wait until a nappy is on to do a number 2 and wears a nappy in bed and on car journeys.</span><o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">1 - Marcus notices tiny details; he can be stimming back and forth and all of a sudden STOP! Fixated on something. - A knot in the wood on the fence, a gap in the curtain, a cobweb on the ceiling. I find this fascinating.<o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">2 – His additional needs support worker told me, that he is more intelligent than his peers in Nursery. He knew numbers 1-10 at age 2 and now at 4 he knows his alphabet backwards. He figured out the passcode on his tablet by himself.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><span style="color: #a64d79;">3 - He loves our cat. The cat can be quite grumpy but with Marcus he remains so placid. Their relationship is lovely to see, both communicating without words. Marcus can get the cat to follow him like playing a game of chase. When Marcus is ill, he lies on the cat like a pillow using his soft fur for comfort (must be a sensory thing).</span><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><i>That’s amazing, animals have a true sense of loyalty to our little people. Our cat is the same apart from with my boy, absolutely idolises him.</i><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>Its really important for carers of autistic children to take some time to re charge batteries, and look after their self, the reality of this makes it quite difficult though so can you share some tips of when and how you recuperate?</b><o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">Before I returned to work I would definitely find my self, sitting at the bottom of the stairs with a cuppa in one hand and a mobile device (facebook) in the other. This was my alone time. I could see the kids in the living room playing separated by the high stair gate. My cuppa was drunk while it was still hot, my phone was not swiped in order to watch trains on you tube. It’s Bliss!<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><span style="color: #a64d79;">Thank the stars for our wonderful teenager. He doesn’t mind sitting with his siblings or taking them out into the garden just so I can have a shower, wash the dishes or just have 5 minutes in silence. On an evening, once the little ones are tucked up, he babysits. My husband and I drive to the local McDonalds, get a drive-thru coffee and sit in an empty car park. We chat, laugh, cry and discuss the issues from the day. We are so lucky to have our teenager for this.</span><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>Similarly its important for the child to be able to take some time and reflect, process their day and relieve all of their pent up anxiety and sensory overloads, so does Marcus have any successful techniques or aids that he uses that you can share? Lola Loves to colour so when she is struggling we always offer her books and pens as a first distraction.</b><o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">Food – as soon as he comes into the house after being out, Marcus heads straight for the biscuit tin. He uses his juice cup as a comfort too. He clamps the spout between his teeth and runs around with it – hands free.<o:p></o:p></span><br />
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">When he is struggling he vocalises mmmmm sounds. Our speech therapist said as he is very movement orientated this movement of muscles helps him. And also Stimming, running back and forth, the more he moves the better he copes.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><span style="color: #a64d79;">When we are out and about he does really well as long you keep walking, he can’t stand still or wait.</span><o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><b>Finally we all want to know about the biggest milestone that you or Marcus has accomplished in recent months?</b><o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;">Honestly, his biggest milestone is settling into Nursery and passing his targets set in his Individual Learning Plan (IEP). This was our biggest fear as parents with an autistic child. His first year we argued his case with our Local Authority and was given his own Additional Needs Worker for 8 hours. So he only went to nursery for 8 hours each week. His IEPs track his progression and OMG what a hug impact those 8 hours have made, he had hit every target set for him.<o:p></o:p></span></div>
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<span style="color: #a64d79; font-family: "verdana" , sans-serif; font-size: small;"><a href="https://www.blogger.com/blogger.g?blogID=7619949788469240816" name="_gjdgxs"></a>This year we have just won a huge battle and not only for our son but 2 other special needs children that will benefit. Marcus was the only one of 4 children that got the right support last year. Now all of the special needs children will be in a secondary nursery room with a ratio of 4 adults to 20 children. With one adult being an Additional Needs Worker dedicated to the Special Needs children. This means that when therapists come in they will have an extra adult to help with hand over hand activities and help support their progression.<o:p></o:p></span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: small;"><span style="color: #a64d79; font-family: "verdana" , sans-serif;">I cannot wait to see what achievements my darling little boy will make this academic year.</span><span style="font-family: "verdana" , sans-serif;"><o:p></o:p></span></span></div>
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<span style="color: #674ea7; font-family: "verdana" , sans-serif; font-size: small;"><i><span style="font-family: "verdana" , sans-serif;">Wow what an amazing achievement you should be very proud of yourself indeed. And on that note, I hope you have a Marvellous week and that this interview has helped benefit you and family, with techniques and ideas, or even just given your Monday morning a bit of a cheery start.</span></i><span style="font-family: "verdana" , sans-serif;"><o:p></o:p></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="color: #674ea7; font-size: small;">Thank you to Lynne for answering my questions and thank you to those of you who have taken the time to read and share this to help many families start that all important week off in high spirits.</span></span></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-76812219852344769722017-09-25T09:00:00.000+01:002018-03-09T13:13:08.375+00:00Marvellous Monday Interview with Riko.<center>
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Welcome to my new series - Marvellous Monday's. I will be interviewing people who have a direct connection to someone who is autistic, or is autistic themselves. I am excited to showcase some positive experiences of carers and parents. There are many difficulties and challenges that we face when someone in the family is autistic, and those little achievements of success are often overlooked because of the extensive caring duties and severe anxiety that some families face. My aim is to publish as many interviews as i can, each week on a Monday morning so that after the busy weekend of caring and the daunting week looming ahead has a positive beginning. Something for you to read, whilst you take you first breather and have your first hot cup of tea or coffer in days. I want to share the happiness and joyful moments of many families, children and adults with the hope that it can help you as a family hold onto that thought that 'It can only get better'</b></span></span></center>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">Please extend a big warm welcome to my first interviewee Riko, from <a href="https://dragonriko.wordpress.com/" target="_blank">Riko's PDA Page</a>...........</span></span></center>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><i><span style="font-family: "verdana" , sans-serif;">Good Morning Riko and thank you so much for taking the time to take part in my regular Monday Morning series, hopefully we can help everyone start the week with some positivity and an uplift. We all know how awful and exhausting the mornings can be, especially if the children or you, are suffering with back to school anxiety.</span></i></span></span><span style="font-family: "verdana" , sans-serif;"><i>I for one, would like something joyful to read, as we struggle on a regular basis here. If you have followed our journey, you will know that Lola really doesn’t cope well in the mornings and Connie –Mai is finding it increasingly difficult to become accustomed to leaving me at the school gates, so.......</i></span><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><i><br /></i><br /><i style="font-family: verdana, sans-serif;">........ What a great way to start the week, by sharing all those positives, some tips for the difficult times and telling us a bit about your family and those massive milestones you’ve reached that you didn’t think possible.</i><br /><br /><b style="font-family: verdana, sans-serif;">So can you tell me a little about yourself and your family and the connection that you have to Autism?</b><br /><br /><span style="color: #a64d79; font-family: "verdana" , sans-serif;">I'm a single parent to 3 boys (10, 4 and nearly 2). We are all Autistic, the type we have is called Pathological Demand Avoidance. So I'm a PDAer bringing up PDA boys. It makes for interesting experiences.</span><br /><br /><b style="font-family: verdana, sans-serif;">Wow – It sounds like you have your hands full, I imagine it can be pretty difficult at times especially with you all having demand avoidance, but tell me a little about how you manage this positively?</b><br /><br /><span style="color: #a64d79; font-family: "verdana" , sans-serif;">I try to keep a positive attitude, I remind myself that the kids and myself are doing the best we can with what we have. The words <i><span style="color: #674ea7;">'kids do well when they can' </span></i>and <i><span style="color: #674ea7;">'can't help won't</span></i><span style="color: #674ea7;">' </span>help me a lot because it reminds me that we are trying our best, it's our disabilities that hinder us. I watch a lot of comedies and use humour as much as possible to ensure everyone has a positive attitude. It's not easy and there are times I really struggle to think positive about myself and the boys, I try to remember that no one is perfect and even when we make mistakes it's not the end of the world, it's a chance to learn and change.</span><br /><br /><i style="font-family: verdana, sans-serif;">It’s definitely exhausting having to remember all of the stratergies needed to help an autistic child, but an extra two and being autistic yourself must make it quite challenging to use positive communication to keep anxiety and those shutdowns at bay. Sounds like you’re doing a <b>Marvellous</b> job (See what I did there?)</i><br /><br /><b style="font-family: verdana, sans-serif;">What are your three top tips for someone struggling to deal with the morning routine and keeping everyone happy? – I for sure could do with some extra ‘Go to’s’ up my sleeve for the mornings.</b><br /><br /><span style="color: #a64d79; font-family: "verdana" , sans-serif;">1 - Reduce, delegate and be positive. If I am struggling then I see if there's anything I can remove from the routine. I keep our routine loose and make changes as needed. If we're in a rush I will skip some parts, as long as they aren't essential. I also try to prepare as much as possible the day before, so bags are ready and clothes are chosen.</span><span style="color: #a64d79; font-family: "verdana" , sans-serif;"> Our basic routine is get up, get dressed, get out the door. Everything else is optional.</span><br /><br /><span style="color: #a64d79; font-family: "verdana" , sans-serif;">2 - Where I can I delegate. If I can't get one of the boys ready I might ask one of the other kids to help, but I'm always prepared for avoidance and adapt as needed.<br /><br />3 - I try to stay positive, the kids respond better if I am presenting as happy and in control, otherwise they start to get anxious and it can quickly spiral into refusal and meltdowns. Remaining positive that we can handle this and that we can work through anything life throws at us helps everyone manage.</span><br /><br /><i style="font-family: verdana, sans-serif;">Wow some really helpful tips there, thank you so much for sharing. So its Monday morning and hopefully the readers have grabbed a cuppa, or a coffee if that’s your thing, and are chilling out for a while, de-stressing, re-grouping and reading this wonderful interview about family life with Riko and her amazing three boys.</i></span></span></div>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><i style="font-size: large;"> </i><span style="color: #a64d79;"><br />They are rather cute and amazing.</span><br /><br /><br /><b>The boys are clearly really benefiting from your awesome parenting techniques, tell us those bits about your boys that make your heart smile, or your stomach flip with joy? The things that on a “normal” level are overlooked into everyday life, but for families like yours and mine are amazing achievements?</b><br /><br /><span style="color: #a64d79;">Well, eldest is really smart, he's always been academic. He can also be the most polite and well mannered kid. But I also enjoy his 'wicked' side, he can be so funny and quick, I enjoy spending time with him because we get along so well. <span style="color: black;">He sounds amazing, its lovely to have a child with a great sense of humour, Lola loves having a bit of banter but Stanley really struggles with this side of things.</span><br /><br />MC (middle child) is such a cheeky character, he's funny and dramatic and loves slapstick comedy. He can be so loving and say the sweetest things. He loves numbers and counting at the moment and can create brilliantly imaginative creations out of his toys. <span style="color: black;">That's brilliant, Lola too loves counting, she counts everyday things, like the wooden banister and the shutter blinds.</span><br /><br />Youngest has such a zest for life, he finds everything funny and his laughter makes everyone else laugh. He's a big stimmer and I love to just watch him being his fabulous self. He doesn't speak much but you can easily tell what he wants, he's so sharp and knows how to get what he wants without saying a thing. <span style="color: black;">Wow that's great! honestly you're amazing and your boys are a credit to you and a true testament of your strength and determination.</span></span><br /><br /><b>What do you find most Joyful about your wonderful boys?</b><br /><br /><span style="color: #a64d79;">I love that all 3 of them are so independent. They will try to do things by themselves first and are quick to learn life skills because of this.<br /><br />They all have their own different personalities and quirks; eldest is dependable and mature, but also witty and cleaver. MC is funny and charming and sweet and a little monkey. Youngest is adorable with a laugh that is very contagious.</span><br /><br /><i>What an amazing little family that you have, I feel so honored that you are sharing all of this with my readers and I.</i><br /><br /><b>Its really important for carers of autistic children to take some time to re charge batteries, and look after their self, the reality of this makes it quite difficult though so can you share some tips of when and how you recuperate?</b><br /><br /><span style="color: #a64d79;">I don’t get a lot of alone time so I try to find small moments throughout the day for 'me time'. I'm not against putting the TV on to distract the kids while I grab a quick coffee. I like to put music on while I do the dishes which both helps me manage the demand and also helps relax me. Sometimes I hide in various rooms of the house and pretend to be doing housework and other times I will engross myself in a book or game or online just to get a bit of freedom.</span><br /><br /><b>Similarly its important for the child to be able to take some time and reflect, process their day and relieve all of their pent up anxiety and sensory overloads, so do they have any successful techniques or aids that they use that you can share? Lola Loves to colour so when she is struggling we always offer her books and pens as a first distraction.</b><br /><br /><span style="color: #a64d79;">We unschool so the boys tend to get a lot of time to do their own thing. Eldest has his own room so that's his safe space to get away from his brothers. The younger two play outside a lot which I'm sure gives them some freedom and lets them burn off some energy. Play is very important so the boys are often doing what they love. If we've been busy I always make sure the kids are free to relax for several hours afterwards. Bath time is a great stress reliever for the younger boys too.</span><br /><br /><i>I find that its so important to share these ideas with other parents because although most of us are aware of them, some of them can be forgotten, and just that little reminder can change a period of negativity to one of positive outcomes for both parent and child, so thanks so much for sharing you wealth of knowledge with us, I am sure that many parents are going to really benefit from it.</i></span></span><br />
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><i style="font-size: large;"> </i><br /><br /><b>Finally we all want to know about the biggest milestone that you or the boys have accomplished in recent months?</b><br /><br /><span style="color: #a64d79;">Recently Youngest has started waving</span> <span style="color: #674ea7;">'bye'</span> <span style="color: #a64d79;">to people when we leave a place, he has also been eating a more varied diet, big milestones in my books. He would probably see figuring out how to open the doors in the house as a bigger milestone though, but he's not the one who has to go chasing after him lol. <i><span style="color: black;">Oh Bless him! so some definite motor and communication milestones there. That's amazing and so great to hear. Oh no the running!!</span></i></span><br /><span style="color: #a64d79;"><br />MC has really gotten into math and has started counting by himself, I think this is a major milestone. There's nothing better than learning through play and enjoying what you're learning rather than it being forced. I hope that love of numbers will take him far.<i> <span style="color: black;">I am sure it will, numbers is always a great achievement and one that cane be used in every day life all of the time, really really valuable for those life skills.</span></i></span><br /><br /><span style="color: #a64d79;">Eldest has had so much to cope with in the last year, many changes and disruptions and he's handled it all brilliantly. I couldn't be prouder. <i><span style="color: black;">So Eldest has been making some brilliant emotional achievements you should be very very proud!</span></i></span><br /><br /><span style="color: #674ea7;">And on that note, I hope you have a Marvellous week and that this interview has helped benefit you and your family, with techniques and ideas, or even just given your Monday morning a bit of a cheery start.<br /><br />Thank you to Riko for answering my questions and thank you to those of you who have taken the time to read and share this to help many families start that all important beginning of the week in high spirits.</span><br /><br /><br />If you'd like to follow Riko and the boy's journey then you find them on FB HERE: <a href="https://www.facebook.com/RikosPDApage1/" target="_blank">Riko's PDA Page.</a></span></span></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-45597293268541350982017-06-08T11:01:00.001+01:002018-03-09T13:13:25.328+00:00Parent Paranoia - A Break Down In Communication<center>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><br /><span style="font-family: "verdana" , sans-serif;">Often parents of children with different needs, disabilities and illnesses find themselves fighting battles with professionals in different sectors daily.<br /><br />As a parent you want what’s best for your child and interventions in place that they need to be able to access life as fully as they possibly can. <br /><br />Often, as a parent you are the ONLY person that fully understands your child’s needs and differences because you know them so well. You know when they are masking or putting on a front, and you know that what they actually look like isn’t necessarily how they are really feeling, but that it is their coping mechanism for when you aren’t around to support their needs as you know fits them well.<br /><br />Enter parent paranoia! This feeling is real, and consuming and has the ability to knock you left right and centre so that all you can focus on are situations where you’ve tried helping your child and the response from professionals is nonplus. <br /><br />'Do they care? ‘ - you ask yourself, ‘was i too forceful?’ you constantly overthink.<br /><br />‘Did i come across like a pushy mother?’ ‘Am i imagining things?’<br /><br />All these thoughts and lots lots more playing over and over in your mind after certain situations where you’ve advocated strongly for your child. <br /><br />You know what they need, you know what helps them. So they don’t show it in school, because they are trying their hardest to fit into a society that everyone else is moulded into believing is normal and correct. <br /><br />My daughter is beautifully behaved at school. Im so proud of that, however it tires me out a little because the extremely violent behaviours that we see at home are unbelievable to those that see my angelic, happy little smiling girl.<br /><br />Then comes the fall out - The violence, the demand avoidance, destructiveness, picking on her siblings, uncontrollable tics, that she’s suppressed. <br /><br />My son, is also beautifully behaved at school, he often just gets on with things, does as he’s asked, is a very polite little boy which I’m so proud of - but he’s falling off the radar with his ability to “just get on with it’</span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><br />'Am i being too pushy?' Am i expecting too much?” thoughts creeping in, situations playing over and over and over in your head, taunting and tormenting. - Parent paranoia. Wasted time spent on thinking about things too much, dissecting them, worrying about what people think of you and how its going to impact on the professional relationship that you thought was sound. <br /><br />You know that your child needs X,Y,Z, yet because they mask and because they ‘plod along’ means they miss out on those interventions that they desperately need. Which all too often results in their tricky behaviours increasing tenfold at home, regression starts, more paranoia creeps in. Children masking and breaking down at home is all to common and familiar see my <a href="http://www.autismwithlove.co.uk/2016/12/when-i-realised-why-my-child-has.html" target="_blank">Coke Bottle Analogy</a><br /><br />'Its a parenting problem' is all too often thrown about like it won’t harm anyone, 'take a parenting course and all will be fine and dandy.’<br /><br />Its not as simple as that, when there is a communication breakdown, it is the child who suffers the most. falls the hardest, and the parent who tries desperately to pick up the pieces, fighting, and begging, pleading and seemingly harassing people for help. <br /><br />As a parent of multiple children who have autism and Attention Deficit Hyperactivity Disorder, who both have the ability to mask and ‘plod along’ in situations so they get by, a good communication relationship is THE single most important tool needed to sustain a healthy working relationship for the child. When that communication breaks down, paranoia sets in and eats its way through threatening to destroy everything.</span></span></div>
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Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-7619949788469240816.post-51174962495785200732017-05-30T14:53:00.003+01:002018-03-09T13:13:47.689+00:00If We Want Perfect Children We Should Give Them Melatonin.<center>
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<span style="font-family: "verdana" , sans-serif;">A reporter called Sarah Marsh has written an article on Monday based on very little factual evidence and more on mum shaming, and quite clearly unjustified opinions, which are at best, laughable, and at worst utterly tarnishing the community that I find myself in online today. Link to original article here: <a href="https://www.theguardian.com/lifeandstyle/2017/may/29/melatonin-prescribed-children-fashionable-treatment-sleep-experts-warn?CMP=fb_gu#comments" rel="nofollow" target="_blank">Too Many Children Being Prescribed Melatonin To help Aid Sleep</a></span><br />
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<span style="font-family: "verdana" , sans-serif;">Apparently Melatonin is given out too readily to children, who are struggling to sleep, and even though the NHS Data on prescriptions does NOT give figures for children specifically - apparently the increase in prescriptions has been raised tenfold. What even is this number?</span><br />
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<span style="font-family: "verdana" , sans-serif;">The article also states that it has become a fashionable treatment for parents who want ‘Perfect Children’</span><br />
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<span style="font-family: "verdana" , sans-serif;">Trust me if I wanted perfect children I wouldn’t be continually seeking out our prescriptions of melatonin. If I wanted ‘Perfect Children’ they sure as hell wouldn’t need any medication. </span></div>
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<span style="font-family: "verdana" , sans-serif;">As an advocate for the online community of parents who have children with sleep conditions, whether it be related to autism, or not, I find this article highly offending.</span><br />
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<span style="font-family: "verdana" , sans-serif;">I had to fight tooth and nail for help with my daughters sleep issues; I went through years of behavior courses, and sleep courses and sleep diaries. Trying specific night-lights, and weighted blankets, massages with lavender, changing our whole routine so that it was completely tailored to her needs. No disruptions, 100% 1:1 before bed time. Guess what? It never worked, so forgive me if you think I’ve over reacted a little here, but my daughters melatonin prescription wasn’t handed to me on a plate. I didn’t want it because all the other autistic children had it. My daughter simply doesn’t produce melatonin, and needs this to be able to at least get off to sleep and have a few hours.</span><br />
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<span style="font-family: "verdana" , sans-serif;">I know that the article is directed at parents who have children with mainly behavioral problems, but even that isn’t an easy fix. And many of those children are overlooked because of the funding cuts, and the hidden disabilities, the ability to mask their symptoms, so before you go around throwing the term “fashionable to use melatonin” try and include some actual factual based evidence on the number of children who are prescribed this medicine who DO NOT have accompanying disabilities and sleep disorders.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Please think before publishing such articles, We as a community of parents who have children with numerous disabilities, and medical issues, do our best to raise awareness, create understanding and acceptance of our little ones, or even ourselves. And when articles like this are published, they are increasingly misinterpreted, and can undo so much hard work that we do.</span></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-82696239085969665742017-05-25T22:41:00.001+01:002018-03-09T13:14:03.086+00:00Forgive Me If I Do A Little Air-Punch When My Daughter's Behaviour Has Challenged You <center>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">If you have a child with Autism, and they are experts in masking their anxieties and are able to suppress their difficulties until a time they feel secure enough to release them, then only us as parents, or main caregivers get to truly experience the difficulties and anxieties that our little people are struggling with day in and day out.</span></span><br />
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">Sometimes these kids can go their whole childhood undiagnosed because they have fooled everyone into believing that they are just like everyone else. These children often go on to having a really hard time when they make it into their teens, and by then they have missed out on the early intervention that they desperately needed. Many of these children are only “Caught Out” because they have suppressed to such an extent that other illnesses or disorders arise, such as Tourette’s, or eating disorders, depression and even suicidal thoughts.<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">So forgive me when I do a little air-punch when Lola’s brought back from her nans, and nanny looks exhausted, or I pick her up from her aunts house and she exclaims “I don’t know how you do it”<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">When Lola is her natural self, uninhibited, wildly carefree, and over excited or she’s anxious and hyperactive, controlling and difficult to manage it can leave you feeling utterly exhausted. These are</span></span><span style="font-family: "verdana" , sans-serif;"> Lola’s natural behaviours, these behaviours are her normal, her typical and when someone describes her as being ‘good as gold’ I inwardly groan.</span></div>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">When she is ‘good as gold’ she is NOT herself. That is not natural, this is Lola masking, copying, and mimicking others so that she can make it through. </span></span></div>
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<span lang="EN-US"><span style="color: #a64d79; font-family: "verdana" , sans-serif;">She’s like a beautiful little swan gliding gracefully through the beautiful sparkling waters, but underneath she’s using all her energy, all her grit and determination to paddle those little feet so that she fools you into thinking she’s mastered this skill to perfection.</span></span></blockquote>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">By masking, Lola is suppressing and squashing down her troubles and that leaves only one result. <i>An explosion.</i> Double and triple the amount of her natural behaviors explode all at once - when she’s home, or when I pick her pick – resulting in the most violent and emotional meltdowns that we see. An example of this explosion is described in great detail in my <a href="http://www.autismwithlove.co.uk/2016/12/when-i-realised-why-my-child-has.html" target="_blank">Coke Bottle Analogy</a><o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">So forgive me when I ask you how she’s been - and I can see the exhaustion in your face – but I look relived that she’s been challenging. I sometimes even let slip a whispered “phew” or outright say “thank god”</span></span><br />
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">It isn’t because I condone bad behavior from children, or I think it is funny. It’s because I am so pleased that she has been able to be herself, she hasn’t suppressed those anxieties to release at a time that she feels safe, and it hasn’t resulted in our family feeling the full brunt of an almighty, violent and very emotional meltdown for hours and hours on end right after we have just had a tiny amount of respite that we have been waiting months for.<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">It is because I am thankful that she also sees you as her ‘safe place’ and that she trusts you enough to be able to mange her anxieties. She trusts that you will help and guide her and you have been given the privilege of knowing who she really and truly is.<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;"><b>So forgive me for doing that little air-punch because it also means that you are one extra person able to give me a break! </b></span></span></div>
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Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-7619949788469240816.post-19908929813207503472017-05-18T20:00:00.000+01:002018-03-09T13:14:34.189+00:00Is Gatwick Airport REALLY Autism Friendly?<center>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "verdana" , sans-serif;">After using the special assistance at Gatwick Airport over a year ago, and being quite impressed with the service, even though there was some miscommunication, I booked it again for this year - hoping that those miscommunications and slight problems would be improved after I had learned from the previous experience.<br /><br />We are family of five, and come with a hefty bag of disabilities. My partner has a mobility condition, and really struggles with long distances, so the wheelchair assistance is a god send for us. I also have a little girl who is Autistic. She has severe anxiety, Attention deficit hyperactivity disorder, Sensory Processing Disorder a Motor Disorder and a whole host of other disabilities. She needs full time 1:1 care, and is currently in an amazing specialist school.<br /><br />Due to this we decided to take the risk and take the children out of education for 10 days to avoid the hustle and bustle of the airport at half term. Knowing how much she struggles with busy places, and unfamiliar surroundings I booked the travel assistance for my partner and Lola, so that as a whole family we could go through with ease, using their special dedicated lanes, the lanyard system - which is in essence a necklace that you wear so that staff members are automatically aware of the need of extra understanding, care and empathy – and have the use of the travel buggy that would take us from duty free to our departure gate.<br /><br />I breathed a sigh of relief knowing that I had booked the appropriate seats for my family, arranged all the travel assistance so that my daughter could be whisked through the crowds and my partner would be in less pain due to all the walking. I didn’t make the same mistake as the year before where they left me with two children and only took Lola and Kenny, so that we were all split up and rushing to make the plane. </span></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;">I had planned, I had checked, and double-checked. Thomson telephone enquiries have a 3GB notes storage of all my conversations making sure everything went to plan.<i> (Yes I am THAT parent</i>) As a special needs parent, and the partner of a mobility restricted person the planning of a holiday needs to be planned like a military operation. I had prepared my children for the airport, I had explained what would happen, how we would be transported through, I had explained that this time we wouldn’t be split up, because as I am Lola’s carer I would need to travel with her.<br /><br /><br />We were all so excited. They knew what to expect and I was confident on my preparation for a girl with such high anxiety that everything should have run smoothly. <br /><br /><br />So why didn’t it? Why were we left sat around waiting for assistance in the busiest part of the airport where my daughter was reduced to such high anxiety that she was openly self-harming. Screaming at anyone that walked past, kicking and punching walls and floors. Why was I wearing a lanyard that was supposed to alert people of my position, yet no one came to help?</span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><br /><br /><br />My partner was wheelchair bound and had to look after two other children whilst my baby girl tortured herself, with bites, and slaps, and punches. She was Spitting and dribbling, screaming and crying. Why were we not given the Special assistance that we were promised? Why were we not given the special assistance that we needed, and that we quite rightly should have been given.<br /><br /><br /><span style="font-size: medium;"><b>We were left vulnerable, in the middle of a very busy airport, ignored and isolated.</b></span></span></span><br />
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><br />When we were finally took through the queues that we should have bypassed, Lola’s’ anxiety increased with such intensity that she had to be forced through the metal detectors. This resulted in her knocking the alarm so she had to then be patted down and put through the big intimidating scanners that she was absolutely petrified of. At this point she was so exhausted that she froze, and because the assistance was so poor I did not know where my other children were. Kenny was wheeled through the scanners, and because Lola had to go the other way, Stanley (9) and Connie –Mail (4) were left to navigate their own way through.<br /><br />The one saving grace at this point as I burst into a flood of tears, in front of my children and three hundred other passengers was the security lady who was searching us. She saw my tears, and frustrations, she noticed my lanyard and she calmed me down with her kind words and patience. She spoke to me for so long, not caring that others were queuing, she put me first.<br /><br />She told me how much of an amazing job I was doing and gave me instructions as to what to do when I got through. I wanted to hug her and never let her go to be honest, these people - The ones that shine, the ones that show so much compassion and empathy are like gold dust – and I hope she reads this and I want her to know that I wont ever forget her. She will always be etched in my memory as ‘The one who got it’ Thank you Gatwick for employing such an amazing and selfless person, but shame on you for not recognizing a family in desperate need of help and assistance. Shame on you for ignoring my requests, shame on you for advertising such services and being so poorly organized that it would have been easier to go through without the assistance.<br /><br />After such lovely words spoken to me by security I was confident that the worst was over. I was sure it would all run smoothly from then on.</span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><br /><br />It wasn’t over and it didn’t run smoothly from then on either. It was a complete disaster. After booking my whole family through for the assistance, I was assured we would all be taken through. However upon arriving back to the special assistance checking point with our buzzer I was informed I would have to walk with Connie and Stanley regardless of the fact I was Lola’s carer and that it wasn’t appropriate to allow her to travel essentially on her own.<br /><br />Why would they even suggest this? If I wasn’t flying with Kenny, would they have made her go alone? I don’t think so. So why again, did I have to find out last minute that the whole family wasn’t permitted on the buggy? My daughter was prepared weeks in advance for what was going to happen, what to expect and what it looked like in pictures.<br /><br />The sheer bad attitude of the staff behind the disability assistance desk was absolutely shocking to say the least.</span></span><br />
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><br /><b>An excerpt from the Gatwick airport Assistance page says :</b></span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><b> </b><br /><span style="color: white;"><br /></span></span></span><span style="color: #674ea7;"><span style="background-color: white;"><span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"> <u><b>Hidden disabilities</b></u></span></span></span></span><span style="color: #674ea7;"><span style="background-color: white;"><span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;">We are working with a number of charities to identify how we can improve the airport experience for our vulnerable passengers who may not want to share details of their hidden disabilities</span></span></span></span><br />
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<span style="color: #674ea7;"><span style="background-color: white;"><span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;">If this applies to you or someone you're traveling with, we can offer you a special lanyard to wear on your journey through our airport. This will identify you to staff as someone who may need additional support or understanding. Our staff have been specially trained to recognise the lanyards and act accordingly. </span></span></span></span><br />
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><span style="background-color: #a64d79;"></span></span></span><span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><br />I can assure you that they did not act accordingly, and they did NOT recognise the lanyards or the fact we were a vulnerable family. They did not care, and their attitude towards our situation after it was explained in detail was not understood and it certainly wasn’t acted upon.<br /><br />I am calling out now to Gatwick Airport to read this. And make changes. This service has really made me think about never wanting to through an airport ever again with my children. How is that inclusive? How is that Special Assistance? I am very disappointed and even if I did consider flying again, I am not sure I could manage to persuade my daughter to ever go through an airport again. I want to be able to see this face, This happy, beautiful and excited little smile on a holiday with her family again.</span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><br /><br />So not only has this experience ruined our expectations, disappointed us and caused an extreme amount of stress for my daughter. It has also ruined future experiences, further family holidays for all of my children, Future life experiences that everyone should be entitled to all because you got it wrong! On so many levels did you get it wrong.<br /><br />If you have any idea how I can ever get her on a plane again please do feel free to let me know? I simply cannot plan for the unexpected. Why did this happen? Had i expected too much? I didn't think so. </span></span></div>
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<span style="font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "verdana" , sans-serif;">Have you used the Special Assistance at Gatwick Airport ? How were you treated? Did the staff understand your needs and deliver the assistance that was promised? Or were you left feeling frustrated and tearful and isolated like my family and I? </span> </span></span></div>
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Anonymousnoreply@blogger.com4tag:blogger.com,1999:blog-7619949788469240816.post-56060549147005479042017-05-18T16:02:00.003+01:002018-03-09T13:14:51.972+00:00Living With Very Challenging Behaviour<center>
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<div class="MsoNormal" style="text-align: justify;">
<div style="text-align: center;">
<span lang="EN-US" style="color: #191919;"><span style="font-family: "verdana" , sans-serif;">Three years ago my daughter was
undiagnosed. <o:p></o:p></span></span></div>
</div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="color: #191919;"><span style="font-family: "verdana" , sans-serif;">Pre-school had no concerns and
neither did her teachers in year 1. We were in limbo discharged from all child
services after a half hour assessment where the paediatrician deemed my child
"an extreme version of normal" what the, who, why, Bleurgh. It was
incomprehensible that this professional "knowing" my concerns and
family history, could describe my child in this way. What she really
wanted to say was, " don't be silly, autistic? Her eye contact is good,
she's just naughty and defiant, here take this referral for the Triple P
parenting course" And so it began..... The rigamarole that parents like you
and I are all too often finding themselves slavery to. Fighting.
Paperwork. Hoop jumping. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-VN92YfIPLkE/WTgg3prn4_I/AAAAAAAAAbg/crESCUR4ktcbYspr0He49ptpWqjHt7pLwCLcB/s1600/19022480_10154412831961637_1368751599_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" data-original-height="936" data-original-width="1600" src="https://1.bp.blogspot.com/-VN92YfIPLkE/WTgg3prn4_I/AAAAAAAAAbg/crESCUR4ktcbYspr0He49ptpWqjHt7pLwCLcB/s1600/19022480_10154412831961637_1368751599_o.jpg" /></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="color: #191919;"><span style="font-family: "verdana" , sans-serif;">My daughter first hit me when she was
1 year old. I was buckling her into her car seat which was always problematic
and as I bent over her I looked into her eyes and said something, what it was I
can't remember, but in that second she slapped me so hard around the face that
my head jolted backwards. She was strong. I remember saying to my mum in that
moment that i would bet my life on it she was autistic. (Not because of the
violence, we already had a couple of other people in the family diagnosed) it
was just an instinct that struck me in that moment. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="color: #191919;"><span style="font-family: "verdana" , sans-serif;">Her behaviour seemed to spiral out of
control. When she started walking she would just approach her siblings of
other members of the family and lash out for no apparent reason. We
couldn't work out why she was hurting people. No one would listen to our
concerns! <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="color: #191919;"><span style="font-family: "verdana" , sans-serif;">My daughter IS autistic, she DOES
have sensory processing disorder AND Attention Deficit Hyperactivity Disorder. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="color: #191919;"><span style="font-family: "verdana" , sans-serif;">She also displays very challenging behavior.
She is diagnosed as atypical autism, although I think she fits more at the PDA
(pathological demand avoidance) part of the spectrum. PDA, is where the child
or adult feels such intense anxiety that every demand is a challenge for them,
so they avoid said demand to such an extreme that even every day
"normal" demands are problematic. From the time that she wakes up,
until the moment she goes to bed we have to face violent outbursts, endure
endless hours of screaming at the top of her lungs, she is impulsive and has no
control over her emotions or outbursts. At her very worst we endure being spat
at, hit and called all kinds of names. She's very hurtful at times and it's
extremely hard not to take it to heart. On a good day I can ignore and rise
above the endless screaming and abusive comments and violence. On a bad day,
it's excruciating. I feel a pain in my heart so powerful I just want to cry.
How can this little 7 year old be so hateful and unfeeling. Doesn't she love
me? My heart literally gets ripped into a thousand pieces and yet, Id forget it
in an instant. I tell her I love her and I hold her until she's calm and quiet.
Until her little bones have stopped trembling and then I forgive her! You see
she doesn't mean to do all of these things, she doesn't mean to hurt me or
anyone else physically or emotionally. She simply cannot control it. We have to
parent her very differently to how other people parent and it goes against all
traditional parenting styles. But if we didn't use the limited demand and only
consequence the completely unacceptable things, then our lives would be
turmoil. We do not Accept violence, or spitting. Those two things are the only
things we consequence for Lola in this house. And if you're reading this and
you have a negative view on my parenting strategies that's ok, it's normal, I
once thought like you, I didn't understand it either, it's very very difficult
to apprehend. BUT if you had a child like mine, and nothing else in the world
worked, what else do you have left to try? <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">Her challenging behavior has a negative
effect on all of the family, her younger sister copies some of her mannerisms,
and for her elder brother, its particularly unfair because he’s so young he
cannot comprehend why I have to deal with her In a more lenient way. It upsets
him and to be honest I don’t blame him, I would feel exactly the same if I was
in his position. He’s learning, and beginning to understand why we do things
differently with her, but sometimes its hard because he has his own issues that
he has to contend with. He is a big brother, and a carer and a son, and a
friend but most importantly he is “him” and he struggles immensely with her
challenging behavior and always having to give in, or give up, or be quiet, or
let her have it. He’s a good boy and I’m so proud of him for the little young
man he’s grown into. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">As a family we do the best we can to
support each other throughout the particularly bad times. We encourage and
praise the good behavior even the slightest things, we value and respect each
other. And we love each other unconditionally. We will get through the hard
times and we will help each other succeed because if we don’t then we will just
crumble as a family and that isn’t an option.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US"><span style="font-family: "verdana" , sans-serif;">My advice to any one out there struggling
with a child who has very challenging behavior is to just take each day as it
comes. Every day is a new day, you do not need to punish yourself for the
things you did wrong, or could have gone better, you need to congratulate
yourself for getting through it in the first place, and then spend some time
reflecting on how you might do it differently next time. Negative thinking only
has a negative impact on how you tolerate things in the future. Take a step
back and look at what’s really important for the family. Make some time for
that other child where there won’t be any interruptions. Make a list of what
bad behavior you need to tackle first, and stick with it. Be strong and let the
little things go. You do not need to spend all of your waking hours picking up
every bad habit, or behavior it will only make you stressed and unhappy. Ask
yourself DOES IT REALLY MATTER. if it doesn’t let it go as princess Elsa would
say.</span><o:p></o:p></span></div>
<!--EndFragment-->
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Anonymousnoreply@blogger.com10tag:blogger.com,1999:blog-7619949788469240816.post-17658611777725258882017-04-30T20:44:00.001+01:002018-03-09T13:15:14.667+00:00Chapter 12 - Lack Of Evidence Meant She Wasn't 'Severe' Enough<center>
<br /><div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;">The Local Authority had decided that Lola didn't need an assessment and the letter would explain more.</span></span><br />
<br />
<br />
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><br /><br /><b><span style="color: #a64d79;">When the letter arrived it stated that:</span></b><br /><br />Lola's special educational needs are not severe enough to be able to grant her an assessment. And due to LACK of evidence provided by the school they wouldn't be assessing but recommending that the school make an appointment with the Educational Psychologist<br /><br />So this LACK of evidence that the school had submitted as part of her evidence consisted of 15 lines of illegible scribble. That is not an exaggeration. I was so mad that I cried. All that hard work had been for nothing. Absolutely nothing. The school knew I was applying, I had kept them in the loop, and they promised to start logging evidence, yet they submitted 15 lines of writing, and all her previous medical reports which i had already submitted as part of my evidence.<br /> </span></span><br />
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;">Well luckily, me being me, had already written up my appeal, and It was bigger than the last lot of evidence. I re submitted everything I could find and made a contents page, and referenced everything I could possibly reference in the reports against each other to prove why she did need an assessment and that her needs were severe enough.<br /><br /><br /><br />I proved that Lola was socially, emotionally and mentally behind by at least a couple of years to her peers. I proved that in the short time she had been at preschool, and year R and all those many months she spent at a private nursery has had no effect on her learning at all. I made representation that she was in danger of or in early stages of regressing. I sent my appeal to the courts. It was actually quite terrifying knowing that I was putting myself up there in the courts to actually have to speak on her behalf and fight them to assess her needs myself with no support from anyone. <br /><span style="color: #a64d79;"><b><br />Inside I was scared.</b></span><br /><br />It was very rare for me to admit that i was struggling, I pushed on, i tried my hardest to rise above the feelings of hatred from professionals that my daughter was in the care of. If i admitted how i felt, then i was failing wasn’t i? On the rare occasion I had opened up and spoken about my feelings to someone they gave me the best advice that i have ever received, advice that to this day i still take on board, and its the one thing i love to share with others when they ask my advice. I was told that once I walk in that room, I should shed myself of all emotion and forget about being this little girls mum, I need to become her lawyer, Her advocate, her voice. Speak for her, stand up for her and tell them what she is unable to tell them. <br /><br />Ever since then that is exactly what I have done! I'm hard faced and cold and to the point. And this is certainly not because I hold no emotion for Lola. In fact It's the complete opposite, I have too much, If I was to go in those meetings full of emotion and sadness for my little girl, then I would quite possibly be a blubbering wreck, which would in turn leave me vulnerable to the opinion of being unstable and I'd have the task of trying to defend my emotions as not being out of control/ depressed/ neurotic. </span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><br /><span style="color: #3d85c6;">They would not take me seriously.</span></span></span><br />
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"> <span style="color: #674ea7;">This was just the beginning.</span> </span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><br /> <span style="color: #a64d79;"> What else would I have to fight for?</span><br /> </span></span><br />
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;">Why do I need to fight for what's right? Why can't they see what I see? Is it because of money? Probably. But I didn't care about that. I will fight for the rest of my life for that little girl and the rest of my family, because we deserve to have a decent quality of life, together making those memories, laughing as a family, sharing jokes and cuddles and being proud of each other. And we/they will have one.</span></span></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-57268763189494474072017-04-25T18:16:00.001+01:002018-03-09T13:15:37.306+00:00Chapter 11 - Introducing PDA On Diagnosis Day<center>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"> <span style="color: #674ea7;"><span style="font-size: medium;">A Journey Into The Unknown</span></span></span></span></span></div>
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;">Okay so I know I say this every single chapter and it's probably getting a bit repetitive now - but it's true - things got worse. We well and truly hit rock bottom going into 2014. Lola's behaviour was erratic, it's like she didn't care about anyone. She didn't care about other peoples feelings, there was no reasoning with her, she was lashing out, her anxiety was extreme, and we were at our wits end with her.</span></span></span><br />
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<b><span style="color: #674ea7;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;">I didn't know what to do.</span></span></span></span></b><br />
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><br />We had the occupational health therapist strategies in place, I mean I went berserk, I brought weighted blankets, weighted rucksacks, bean bags with zips and poppers and sensory dens, sensory swings. (Swing pods) all the lights you can imagine, bubble lamp, lava lamps salt rock lamps, she wasn't sleeping, she wasn't resting in the day. And by pick up time from school she was a complete and utter mess, nearly every day she was having accidents and she had no friends.<br /><br />She loved people, and specifically spoke about a couple of children all the time but it just wasn't reciprocated in the same way. Lola loved adults too, and found companionship in a TA, whom she loved. The school described it as her special interest. (Not to me of course) but to the clinical professionals.</span></span></span><br />
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></span><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><span style="color: #674ea7;"><b>So breaking point was this:</b></span></span></span></span><br />
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><br />Just a normal pick up for us, me carrying Lola out of school kicking and screaming, pushing a baby, whilst watching Stanley, strapping her in the car only for her to kick and scream and bite herself the whole way home. By this time we had moved Stanley to the front seat so that Lola couldn't hurt him as she frequently did once in the car. It was a horrendous evening, Kenny was working late, it was the beginning of the year 2014 and as a builder things were slow over Christmas so he worked a lot of evenings at that time. I was bathing Lola and Connie, Connie was 15 months and just sitting in the bath playing with her toys and toothbrush and I was sitting on the toilet. Lola pushed Connie’s head under the water, must have been a few seconds. I must have zoned out, I really don't know, or I was looking the other way, I can't quite remember but I didn't have 100% focus on them. And I blamed myself a lot after this. I was so angry. With Lola and with myself mostly. Why wasn't I watching them? I was sat right there.<br /><br />I grabbed Lola's hand off of Connie’s head and grabbed her out of the bath, whacking her on the back as she was coughing and spluttering. But she was okay. She was fine. She didn't cry just coughed up and cuddled me. I was distraught I got Lola out the bath and Sent her to her bedroom, she had a look of confusion, hurt, upset in her eyes. She didn't realise why mummy was shouting, she didn't realise why Connie was coughing and spluttering, she didn't realise what she had done.<br /><br />Here's why. She has no understanding of consequences. No idea of what her actions may cause. She just doesn't. That doesn't stop me getting cross though. I couldn't even look at her and even in that moment I knew it wasn't her fault and the little look on her face whilst I put her in her room was devastating. But once again Connie needed me and I couldn't concentrate on Lola I needed to concentrate on Connie</span></span></span><br />
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"> (At Peppa Pig World - Ph<span style="font-family: "verdana" , sans-serif;">oning the Local Authority)</span></span></span></span><br />
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><br />That night I've never been so grateful for an unannounced visitor. My sister walking in and taking control because to be honest I couldn't even think. I wanted to just run away, hide and stay there for a long long time. Becky went and dealt with Lola and I phoned 111 because I had freaked myself out with something called delayed drowning. Once I had calmed myself down enough to look at Lola I went to her room and she just melted in my arms. There wasn't any need for words right then I knew I had to protect Lola even from herself because if I wasn't there to teach her that these things are wrong then what will she do next? She needed me to be calm, and stop shouting and understand her because to teach her life skills I have to understand her inside and out.<br /><br />An ambulance was called and Connie Mai was checked over and was fine. And back to the doctors I went the next day to demand that someone help us. We saw a different GP this time and this one I ask for every time to see Lola. He wrote a letter to CAMHS and within two weeks I received a letter for an appointment for an ADOS (autism diagnostic observation schedule) for ten days time.<br /><br /><span style="color: #674ea7;"><b>I was so grateful</b></span></span></span></span><br />
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><span style="color: #674ea7;"><b> </b></span></span></span></span><b><span style="color: #674ea7;"><span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;">In other news –</span></span></span></span></b><br />
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><br />Kenny has his lumbar puncture, he was scared, but I told him if Connie could have one without crying then he could manage it so we went together just like all his other appointments, he must feel like he has a second mother with me about. I make sure I go to every appointment, know everything there is to know and I'm quite overbearing actually when you look at it like that but at least we all know what's going on as if it was left to him we wouldn't know anything.<br /><br />So this lumbar puncture was the next test in line to confirm primary progressive multiple sclerosis. The procedure was done on a day ward and it was over and done with within a couple hours. It wasn't as bad as he was expecting and he felt fine after. I made him go home and lay down for two days though.<br /><br /><b><span style="color: #674ea7;">The results were all clear.</span></b><br /><br />We were ecstatic. But that didn't solve any of his problems, his legs were getting worse. He was unbalanced, unco-ordinated and in a lot of pain daily. He describes it as - imagine you were to kneel on your legs for half an hour and they were to go all tingly and numb, that's how his legs feel constantly. Every second of every single day. I know I couldn't bare it. I have no idea how he manages to get through each and every day feeling like this.<br /><br />So I went into school and told them Lola's appointment was imminent and that could they start the statement process, to which they agreed, they said they would start collecting evidence. Which they never did. They told me that Lola needed a diagnosis before they could apply for an assessment of her needs. I knew this to be false and so pulled them up on it. They agreed to apply again, Which they never did.</span></span></span><br />
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><br />So I applied myself, with bucketful’s of evidence as to why she needed extra funding. I researched all the correct terminologies, and laws, SEN code of practice quotes, got together all her reports from the consultants and pediatricians and hunted out all her school reports. It took an age and I worked on it for weeks. Her ADOS appointment came around very quickly - it was end of March sometime. I was so very nervous that she was going to be having a good day, because this happened quite frequently with Lola, she would just switch, and be a completely different person to the point where I think I imagine things but luckily she was just her normal beautiful self. She was Lola, and she behaved in a way that she would normally behave in. She was difficult, hard to read, uncontrollable, and had the need to control others. She was silent for most of the appointment. They done a series of games and used prompts, the whole thing took about an hour and Lola showed enjoyment in one thing - which was the bubbles. She smiled and laughed and shared her enjoyment. And as soon as they went away she growled and clammed up.<br /><br />The speech and language therapist who conducted the ADOS said she suspected a diagnosis would be given of autism but that she needed a clinical psychologist to go and view Lola at school and have an interview with the teacher.<br /><br />(I now have access to that interview) and let me tell you this - For someone who was supposed to be fine at school, according to the teachers own admissions she certainly wasn't if this questionnaire is anything to go by.<br /><br />I had feedback from the clinical psychologist, who mentioned a few things but never really said anything. Wasn't worth the phone call if I'm honest. We just had to wait two weeks for the appointment for diagnosis if any. I convinced myself I would have to keep fighting, I was sure they were going to turn us away again and that it was a waste of time, and that I’d have more hard work and more appointments to fight for.<br /><br /><b><span style="color: #674ea7;">Turns out I needn't have worried.</span></b><br /><br />Lola scored high on the ADOS and on the social communication questionnaires. She was diagnosed as ATYPICAL AUTISM.<br /><br />For those of you wondering why, it's because she displays quite different from a child with classic autism. She is social, sometimes too social. And she manages to hold all her anxiety in at school so they don't see the struggle. She masks all her symptoms, because she is a girl and naturally girls need to be social don't they? They have it built in them to get along in life and Lola has adopted these coping mechanisms to survive. But as soon as mummy picks her up she can be herself and the bottle top comes off and she explodes all over me. Just before this though and this is where I am going to bring your attention to a little something called PDA (Pathological demand avoidance!) Something I came across when googling the term "autism in girls" and "why is it hard to detect autism in girls" (see I was Google maniac and I googled a lot at this point) I read everything. And when googling this it took me to a page on the national autistic society.</span></span></span><br />
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<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><br /><br />With a clear description of a condition called PDA, which was at this point described as "a condition increasingly known as an autism spectrum disorder" (that's changed now) but last year no one would even acknowledge it, it's like all professionals had been brainwashed to ignore this term, they brushed it off, professed to not know what I was talking about. But when I read the page on PDA, it was quite literally like reading a chapter of her life, it described her to a tee! And so I found a support group and researched some more. It was Lola.<br /><br /><b><span style="color: #674ea7;">She was PDA.</span></b><br /><br />How could she be so like this and it not be recognized? It was postcode lottery. Some children and adults like Julia Duant have a diagnosis of PDA, or of autism with added demand avoidance.<br /><br />It was so important she got an autism diagnosis that I didn't push it with her consultant and Instead I adopted the styles and techniques and learning strategies that were having consistent positive effects for children with PDA and used these at home. With much more benefit.<br /><br />It was a struggle at first to convince Kenny. You'll see why when Julia from <a href="https://memyselfandpda.com/" target="_blank">Me<span style="font-family: "verdana" , sans-serif;">, Myself an<span style="font-family: "verdana" , sans-serif;">d PDA</span></span></a> explains about PDA. And it's symptoms and it's very diverse strategies. But I made Kenny and my mum fill out a PDA questionnaire and Lola scored just as highly as when I scored her. I was so excited I found something that fit her. For once I agreed with the professionals she didn't quite fit the classic autism diagnosis. And going back to the PDA support group they inform me that basically atypical was PDA. We had more referrals from that diagnosing appointment too, Lola was to see a gastro doctor as she always has bad belly and was frequently sick. Without having a bug. She suggested a reduced dairy diet, so no big cups of milk but milk on cereals was ok, and limit the cheese and yogurts etc. it helped but it didn't cure it. So by the next appointment Lola was on a completely dairy free diet and things were much better. Coeliacs disease was mentioned and she had bloods taken for genetics and coeliacs disease.<br /><br />At the same time Stanley had his appointment for the neurofibromatosis and he had bloods taken for vitamin d deficiency and other things too. Stanley saw the neurology consultant who didn't diagnose NF1<span style="font-family: "verdana" , sans-serif;">,</span> because to have it you need at least 6 of the café-au-lait marks and he had 4. So he was to have an eye test to check the health of his eyes and come back in one year. We have had his second follow up eye test though, where they had flagged up dyslexia and have been referred to the dyslexia research center for testing. He has six months worth of research sessions and then we get a full report and special glasses if needed. Stanley was reporting that he sees some letters and numbers as colours.<br /><br />So we had a diagnosis, we had a dairy free diet -which was showing improvements. And I had sent off my request for an assessment of Lola's special educational needs, for a statement. And requested that the school get the EP (educational psychologist) in for a visit to assess her needs.<br /><br />They were adamant they weren't going to request this and kept putting me off stating they hadn't collected enough evidence and that the EP was very busy and that they thought Lola was okay. I felt so alone and that no one was supporting me, it was awful. I felt paranoid that they were talking behind my back and I sat there and I spent about two months collecting evidence, arranging more appointments for Lola with the SALT, (speech and language) and OT (occupational therapist) for a full assessment of her needs as evidence towards an assessment. These reports showed that Lola needed a significant amount of extra support. The request was due to go to a panel of decision makers on 30th July 2014 This was Lola's birthday and we were at Peppa pig world. I was so anxious all day, I knew in my heart it would be bad news but I was still hoping. I phoned them and they said they had no news for me but would contact me ASAP with a decision.</span></span></span></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-17945533401291995562017-04-21T21:42:00.000+01:002018-03-09T13:15:54.916+00:00Autism Awareness - #YourJourneyMyBlog - How a Non - Verbal Child says "I Love You"<center>
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<span style="font-family: inherit;"><span lang="EN-US" style="color: #275aaa; font-family: "verdana" , sans-serif;">The month of April is best known for the explosion of Easter
Bunnies, obscene amounts of chocolate as gifts for children and a magnificent
feast to celebrate the resurrection of Christ. To many people April is Easter,
They plan, they organise, many months in advance sometimes, Children have the
time of their lives, gorging on chocolate, receiving gifts from extended family
members, but to me, April is Autism Awareness month.</span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">So to celebrate this, I am going
to dedicate my blog for a whole month to families who wish to share their
Autism Journey with you. Some of these people have autism themselves, some are
autistic parents to autistic children. We have teachers with autistic students
and even Bloggers who want share their journey with me, which I am very
grateful for</span></span></div>
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<a href="https://3.bp.blogspot.com/-i6vUI2JaUKc/WPpo6CUvctI/AAAAAAAAAYU/LttOON9IHSABldq_C5WaP9Mgivva7tycACLcB/s1600/jack%2B1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: "verdana" , sans-serif;"><img border="0" src="https://3.bp.blogspot.com/-i6vUI2JaUKc/WPpo6CUvctI/AAAAAAAAAYU/LttOON9IHSABldq_C5WaP9Mgivva7tycACLcB/s1600/jack%2B1.jpg" /></span></a></div>
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<a href="https://1.bp.blogspot.com/-NQJjzkKIO2o/WPpujUtSisI/AAAAAAAAAYs/Uf36jumL6mMP74Ecam5jOQdP4OgP988qACLcB/s1600/jack%2B3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: "verdana" , sans-serif;"><img border="0" src="https://1.bp.blogspot.com/-NQJjzkKIO2o/WPpujUtSisI/AAAAAAAAAYs/Uf36jumL6mMP74Ecam5jOQdP4OgP988qACLcB/s1600/jack%2B3.jpg" /></span></a></div>
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<a href="https://2.bp.blogspot.com/-ng1sSSWsDf0/WPptdW7RwZI/AAAAAAAAAYg/zUy2PGDW_gMS55dz3LTN4bm-iuOe7mSDgCLcB/s1600/jack%2B5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: "verdana" , sans-serif;"><img border="0" src="https://2.bp.blogspot.com/-ng1sSSWsDf0/WPptdW7RwZI/AAAAAAAAAYg/zUy2PGDW_gMS55dz3LTN4bm-iuOe7mSDgCLcB/s1600/jack%2B5.jpg" /></span></a></div>
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<span lang="EN-US" style="color: #275aaa; font-family: "verdana" , sans-serif;">.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">You can follow Nikki on her Facebook page </span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><a href="https://www.facebook.com/Autism123duanes/" target="_blank">My Autism & Duanes Syndrome awareness</a></span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;"><br /></span>
<span style="font-size: small;">She also has a website which is <a href="https://autismandduanessyndromeawareness.wordpress.com/" target="_blank">HERE</a></span></span></div>
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<img nopin="nopin" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK9qwC4ljFkXGRJc64E57UqWg1wB30ErIV7_x4bo1DUZwTTELWzFnxUrD4BBRnUA_xDcfPhANmEag57q_EReKyTjrBJ0sA04T13swWz78KoWnbgs32suJ2KUXAEzWOOwKNqY1fLsBZfZoR/s1600/LOLAsig2.jpg" /></span>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7619949788469240816.post-51245014942777527762017-04-20T19:10:00.000+01:002018-03-09T13:16:19.095+00:00Autism Awareness - #YourJourneyMyBlog - Spectrum Swearing<center>
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<span style="font-family: "verdana" , sans-serif;"><span lang="EN-US" style="color: #3170b9;">The month of April is best known for the explosion of Easter Bunnies, obscene amounts of chocolate as gifts for children and a magnificent feast to celebrate the resurrection of Christ. To many people April is Easter, They plan, they organise, many months in advance sometimes, Children have the time of their lives, gorging on chocolate, receiving gifts from extended family members, but to me, April is Autism Awareness month.</span><span lang="EN-US"><o:p></o:p></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="EN-US" style="color: #3170b9; font-family: "verdana" , sans-serif;">So to celebrate this, I am going to dedicate my blog for a whole month to families who wish to share their Autism Journey with you. Some of these people have autism themselves, some are autistic parents to autistic children. We have teachers with autistic students and even Bloggers who want share their journey with me, which I am very grateful for.</span></span><br />
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<span lang="EN-US" style="font-family: "verdana" , sans-serif;">With
April coming to a close, I would like to share one of my most entertaining
moments as an Autism Mom…one I thought I would never have. </span></div>
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<span lang="EN-US" style="font-family: "verdana" , sans-serif;">A little background
on our autism journey…</span></div>
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<span lang="EN-US" style="font-family: "verdana" , sans-serif;">My son Cody was diagnosed at the age of 25 months, he is
now 20 years old. He was non-verbal and severely apraxic at the time of his
diagnosis. We introduced sign language early on and he picked it up quickly; he
was desperate to communicate, which was a huge gift!! He started to imitate
words and had some scripted phrases that he used consistently by about 7 years
old. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "verdana" , sans-serif;">When
Cody was 11 years old and in Middle School, there was a student in his class
that had an extensive swear word vocabulary that he used quite often and in
context. One evening when Cody was working on his homework at the dining room
table and I was cooking dinner with just a breakfast bar between us I hear
<span style="color: #3d85c6;">“bitch”</span>. It surprised me but I decided to let it go because it was clear that
he had no idea that I heard him. </span></div>
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<span lang="EN-US" style="font-family: "verdana" , sans-serif;">Over the next ten minutes my precious little
angel said the word bitch about one hundred times in all different voices…low, deep
voice, high pitched squeaky voice, raspy voice, whispering, yelling. I know
that it is very age appropriate to be curious how a swear word would sound
coming out of your mouth, but after 10 minutes, I had to confront him. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "verdana" , sans-serif;">I
went over to the dining room table and asked him what he said. He told me,
<span style="color: #3d85c6;">“nothing”</span>. I said <span style="color: #3d85c6;">“oh, okay”</span> but as I walked back to the kitchen he started
again. I went back to him and asked him what he said again. He started to
fidget and got his <span style="color: #3d85c6;">“OH NO”</span> face on. He was wringing his hands and looking up
for an answer that would keep him out of trouble. After several seconds, he
said <span style="color: #3d85c6;">“gar-bitch”</span>. </span></div>
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<span lang="EN-US" style="font-family: "verdana" , sans-serif;">I repeated <span style="color: #3d85c6;">“gar-BITCH???”</span> and he said <span style="color: #3d85c6;">“yes, gar-bitch”</span>. It
took everything in me not to laugh but I know I could not hide the pride
beaming. My very clever boy came up with a much better cover than I ever could
have. I went on to tell him that the word is pronounced <span style="color: #3d85c6;">“garbage not gar-bitch”</span>
and he replied <span style="color: #3d85c6;">“oh, sorry”</span>. I just smiled and went back to the kitchen. <o:p></o:p></span></div>
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<!--StartFragment-->
<!--EndFragment--></span></span><br />
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "verdana" , sans-serif;">I
know that April can be an overwhelming time of year for our families and I hope
this put a little smile on your face, thinking about that day put one on mine.
So put all your gar-bitch aside and try to find the humor even on the hard
days. </span></div>
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<span lang="EN-US"><span style="color: #3d85c6; font-family: "verdana" , sans-serif;"><br /></span></span></div>
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<span lang="EN-US" style="font-family: "verdana" , sans-serif;"><span style="color: #3d85c6;">You got this!!</span><o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><span lang="EN-US"><span style="color: #3d85c6;"><br /></span></span>
You may have recognised Jennifer from her page: </span><br />
<span style="font-family: "times";"><span style="font-family: Verdana, sans-serif;"><a href="https://www.facebook.com/AutismAwarenessShop/" target="_blank">Autism Awareness Shop</a> </span></span><br />
<span style="font-family: Verdana, sans-serif;"><span style="font-family: "times";"><br /></span>
<span style="font-family: "times";">You can also check out her website - <a href="https://autismawarenessshop.org/" target="_blank">HERE</a></span></span></div>
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<span lang="EN-US" style="font-family: "times"; font-size: 20.0pt;"><span style="color: #3d85c6;"><br /></span></span></div>
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<br />
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