tag:blogger.com,1999:blog-32583885304222046172024-03-25T10:16:21.724+08:00Our Journey of Selective MutismKerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.comBlogger107125tag:blogger.com,1999:blog-3258388530422204617.post-46297703561239581212015-11-13T22:06:00.001+08:002015-11-13T22:06:39.006+08:00something new...<div style="text-align: justify;">
Now it has taken me some months to write about this, I think I didn't know when to start. Part of which is I needed to take the time to digest the new normal for us. For a long time I had this box of symptoms that didn't fit the diagnosis that we had already discovered about my boy. In the beginning I had thought it was all related to the anxiety and the impact that Selective Mutism had on his early childhood and how it had impacted his social, emotional and every type of development. But I had always mentally logged away certain behaviours and symptoms until they reached the point where I couldn't put it down to anxiety any more. It felt like we had gotten the anxiety to a point where it was somewhat managed that it wasn't as life controlling as it used to be, and that is where we began. </div>
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Amongst the complexity, we hadn't even considered it until after discussions with our son's teacher made us think about it. You see at our old school we were kind of given the impression that there was nothing actually wrong everything we were experiencing was completely normal and we were trying to get our children help for which there was nothing wrong. A lot of the time it ended up that we were given the impression that indeed it was a problem with us the parents and we just needed to get more organised and there was really no problem at school we were the problem. Hence we weren't able to see the forest for the trees and got nowhere. </div>
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Now in a new environment, it was easier to see things a lot more clearly. Firstly my boy was so much more relaxed and the symptoms that I had put down to anxiety didn't seem to fit the bill anymore and so we began. We spoke to our trusty psychologist about that we thought our boy had ADHD, after some intense testing, in itself was quite revealing. I needed to sit back and let my boy fidget, let him move not talk to him so that you can see what he was like for the purpose of the assessment. That was pretty hard, but it did make me think about how many times I needed to say something. However at the end of that session it was pretty clear that we had finally figured it out. After which we needed a questionaire from the teacher and then it was all collated. Then it was full steam ahead, we had the reports sent to our paed and the recommendation was that medication would be of benefit. </div>
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Luckily we had an appointment booked for the following Monday, and it all fell into place. We actually didn't think anyone would actually agree with us, and then they actually did. To be honest it was a relief I knew who my son was, I knew his character, his personality and it didn't add up to what we were told eg. it was our parenting that was the problem. But then it meant it actually was something that was forever, till now we knew Anxiety could be something that he could eventually master to some degree, but this type of diagnosis was forever. It felt like our journey was only just beginning. </div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com1tag:blogger.com,1999:blog-3258388530422204617.post-79388549743359074962015-05-25T12:25:00.002+08:002015-05-25T12:39:55.758+08:00what happens when the anxiety continues <div style="text-align: justify;">
<span style="font-family: Georgia, 'Times New Roman', serif;">It's been an extremely busy few months since I posted a little idea about what I was considering on posting next. As you know my son in his journey in overcoming has started medication and this has been an amazing help for him. Maybe I was naive</span><span style="font-family: Georgia, 'Times New Roman', serif;"> or maybe just stuck in our situation I had always thought that when we finally got him to the point that he could speak then our struggles would be over. Much to my surprise he still struggles with anxiety, many would say he is suddenly cured. Nope he is not even though our local Community Mental Health group would say he is. It turns out it's not over yet, which was painfully evident when our son first suffered his first panic attack. </span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;">So... we aren't at the finish line yet. I read this great article written by the Child Mind Institute on the subject of anxiety, <span style="color: black;"><i>"<a href="http://www.childmind.org/en/posts/articles/2013-3-26-anxiety-and-disruptive-behavior" target="_blank">How Anxiety leads to disruptive behaviour</a>"</i></span>. They make some really good points a few that made me think. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>if your child needs to be spoken to by the teacher, </i>we didn't realise how much of an issue this was until recently. He started speaking to us about the times he used to get told off for things that were related to his diagnosis such as shoelaces, going to the toilet that type of thing. We had changed schools and all these experiences come up. I had to chat with my son about how not everytime a teacher talks to you they are not telling you off and it is ok to ask are you telling me off. This was mentioned in article too that the boy who they were working with </span><span style="background-color: white; line-height: 17px;"><span style="font-family: Georgia, Times New Roman, serif;">"He can't tolerate any—even constructive—criticism. He just will shut down altogether. This was an aha moment for me, that he struggled with even that as well. </span></span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif; line-height: 17px;">Anxiety manifests in a surprising variety of ways in part because it is based on a physiological response to a threat in the environment, a response that maximizes the body's ability to either face danger or escape danger. So while some children exhibit anxiety by shrinking from situations or objects that trigger fears, some react with overwhelming need to break out of an uncomfortable situation. That behavior, which can be unmanageable, is often misread as anger or opposition.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; line-height: 17px;">"Anxiety is one of those diagnoses that is a great masquerader," explains Dr. Laura Prager, director of the Child Psychiatry Emergency Service at Massachusetts General Hospital. "It can look like a lot of things. Particularly with kids who may not have words to express their feelings, or because no one is listening to them, they might manifest their anxiety with behavioral dysregulation.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>anxiety presents either as an internalised response or can show external symptoms. </i>The tricky part is unless a person is skilled at picking the symptoms it is easy for anyone including parents to miss the signs that their child or a student of theirs is struggling with anxiety. Then you also have the added bonus of each child will also present differently. When our son was younger we always knew he was anxious if he started acting out, behaving badly being upset or whatever was presenting at the time. It always confused us. But I know that he was very internal about his feeling but it showed in his behaviour.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><i>continued from my March thoughts....</i></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><i>it's not over yet </i>is a fearful thought for any parent who has had a child with Selective Mutism, it can still raise it's ugly head. A few months after I started writing this article I have come back to finish it. Still thinking on the topic of anxiety and how it is affecting my son in the here and now. I am happy to report that a new school has made the world of a difference for him, being in the right environment is one quick way to reduce anxious type behaviour and it seems it is not as in the foreground screaming at us as it did before. And this year he has only been on the verge of a panic attack just the once. So it seems our actions and also the right dose of medication is really helping right now. We are hoping in the near future we can reduce his dose and see how this goes<br /><br /><i>so what if your child is struggling right now? </i>This is what I would say regardless of the origin of the anxiety as a parent you can be a safe place for them. <i>Firstly</i> NEVER ever downplay the issue it may seem quite small and silly at the time but it is important to validate them but then also teach them how to cope. A simple easy strategy that anyone can help your child with is breathing, slow deep breathing can really make a difference in an anxious situation. <i>Another strategy </i>starts with the safe place of your home,give your child the chance to have some quiet time if they are particularly anxious, turn off all the noise and let them have some quiet time. <i>Books </i>are fantastic in helping a younger or an older child understand their feelings. We used this a lot with our eldest and we still bring them out from time to time with our other children. There are lots of things we can do with our children to teach them how to manage anxiety (as stress and anxiety is a normal part of life) and overcome the feeling of being overwhelmed by those horrible feelings. And it is so healthy to start young so that they can be healthy well adjusted adults in the future.<br /><br />It's been a few months since I started writing this post and I have been thinking a lot about this issue. In reality it was unrealistic to expect a miraculous recovery and for anxiety to simply disappear. But what we have learned is that sometimes our children's mental health can become a life controlling issue. It is not something we would ever want for our children. That is why we chose to use medication undo the damage that anxiety had done on him for most of his life and lucky for us this was successful and we are on the other side now of a tough decision knowing that it was right. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">So if your child is struggling with any mental health issue, do take the jump to get them treatment, use the psychologists, GP's, pediatricians and other professionals to equip and support you to help your child to get their mental health issues within an acceptable limit. Some children unfortunately will struggle for quite a long time and this is real, and others may go on to battle this for the rest of their life. It doesn't make you a bad parent nor does it make your child a bad child either. </span><br />
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Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com1tag:blogger.com,1999:blog-3258388530422204617.post-77671730335455193292014-11-18T14:16:00.000+08:002014-11-18T14:17:40.529+08:00What to do if the anxiety continues<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://usw7135.ca/wp-content/uploads/2014/08/Coming-Soon.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://usw7135.ca/wp-content/uploads/2014/08/Coming-Soon.jpg" height="254" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">My thoughts on the relationship between Selective Mutism and Anxiety and what to do if you discover that the anxiety still exists once your child is able to speak. </span></td></tr>
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<br />Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0tag:blogger.com,1999:blog-3258388530422204617.post-21863496687643791572014-07-06T16:32:00.002+08:002014-07-06T16:35:49.336+08:00those moments when you....<a href="https://encrypted-tbn3.gstatic.com/images?q=tbn:ANd9GcQPllgfYaA3HyaQU1VbljB6edEgb-K42S-sDLjWMYygC7LcBZe-" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://encrypted-tbn3.gstatic.com/images?q=tbn:ANd9GcQPllgfYaA3HyaQU1VbljB6edEgb-K42S-sDLjWMYygC7LcBZe-" /></a><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">- really give it to the waitress who tries to tell you that you have to pay $2.00 extra because you didn't book (who we phoned earlier)</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;"> - when the internet goes down for the 70,000th time you give the internet company a bit of a mouthful (not swearing btw)</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"> - your poor husband is on the receiving end of being told off just a few too many times in one day and then you have to ask them to pick up the kids</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"> - some makes an innocent comment on your facebook timeline that shouldn't annoy you and you want to rip their head off </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- you just keep forgetting words as you are trying to talk</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; text-align: justify;">Maybe just maybe I am not looking after myself as I should. This journey that I am on it seems like it is a long longer than I thought. To be honest it got a lot more complicated when I thought it should be getting simpler right about now. I can't change the situation the diagnosis, the issues that keep coming up. I can only change myself, I thought I should list a few things I have noticed that I need to change or are a result of the situation I find myself in:</span><br />
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<li><span style="font-family: Georgia, Times New Roman, serif;"><b><i>putting on weight </i></b>this is the most difficult to discuss.. after working my butt off (literally) for the most part of 16 months doing something just for me, feeling great about myself and being much healthier. I was doing some clothes shopping the other day and realised I didn't like what I saw. Before when I had lost weight I was admiring the change and the hard work that I had put in to do that. Is it the kids fault maybe not, but having to move houses and then having my<i> </i><u>plate portions doubled</u> in more ways than one, <u>one being what I have to manage</u> and the<u> kids health issues</u> and <u>two what I am eating. </u>My biggest confession? maybe eating a block of chocolate in one night is not too great for my waistline! <u><b>goal: </b></u></span><span style="font-family: Georgia, 'Times New Roman', serif;">so my first goal is to actually get back into my gym routine, walk more ( if it's not raining) but actually TURN UP! </span><span style="font-family: Georgia, 'Times New Roman', serif;">For my birthday pressie my husband bought me a </span><a href="http://www.fitbit.com/au/one" style="font-family: Georgia, 'Times New Roman', serif;" target="_blank">fit bit one</a><span style="font-family: Georgia, 'Times New Roman', serif;"> I had one for ages and then because I was too tired I washed it this will help me keep active! Watch my excuses is the biggest thing! </span></li>
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<li><span style="font-family: Georgia, Times New Roman, serif;"><i style="font-weight: bold;">not doing what helps</i> so I got to a point where I was like I can't change my situation but there are some stuff that I can do to help. Three things that come to my mind quick smart? are <b>one</b> I used to love going to the gym and working out more than a few times a week. Confession I struggle to do it more than once at the moment. Eating well is number <b>two </b>yeah I think I am failing in that area too, good thing you can't see my red face from here. You get the point and yep it seems to relate to point one too. My <b>third</b> thing is simple yet not I need more sleep plain and simple I am exhausted just exhausted and now sick so yep need to work on this big time. <b><u>G</u></b><u style="font-weight: bold;">oal:</u> </span><b style="font-family: Georgia, 'Times New Roman', serif;">Sleep more </b><span style="font-family: Georgia, 'Times New Roman', serif;">yep still going to work on it, I have even blogged on this before. But right now this is where I struggle the most. So how do I do this? turn the TV off earlier, go to bed before 10:30, and monitor my sleep with my fitbit one and try and get better results. The proof will be in the numbers. </span></li>
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<li><span style="font-family: Georgia, Times New Roman, serif;"><i style="font-weight: bold;">getting a bit boring </i>the whole danger of being a Mum and a special needs Mum is that we can get a bit boring. If it is not talking about our kids their achievements and their lack of or their behaviour. It can also be the appointments you are attending all the time and how busy we are. Yep I know I am guilty of this, I think what has also happened it means I disconnect a little from those who seem to have a dare I say it stock standard family situation. No special needs issues, normal discipline issues, shopping, cleaning and that is it not really I know but it feels that way. You don't want to talk about your life because you fear they may not get it or that they may say something that really hurts or you have to spend the next week getting over. So you become a bit boring and just talk about the weather coz that's safe :) <u style="font-weight: bold;">Goal:</u><span style="font-weight: bold;"> </span>this is something I am just starting, I enrolled in TAFE to do bookkeeping one way to not be boring is to give yourself something to do. Yes I know the time commitment could be an issue but I think it will help me think and talk about other things if I do something else as well.</span></li>
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<li><i style="font-family: Georgia, 'Times New Roman', serif; font-weight: bold;">might have become a bit emotional </i><span style="font-family: Georgia, 'Times New Roman', serif;">yeah the not so great truth. It's kinda natural for it to be like that but... if I want to be the best Mum/wife or whatever else my roles dictate I NEED to look after myself enough said. <b style="text-decoration: underline;">Goal:</b> <b>get out a bit more </b>doing something just for me is totally going to help, I head out to a bible study group in my church once a fortnight, but I really need to get time out more regularly and I think date nights etc.. have taken a back seat. I am going to work on doing something more, whatever that is family orientated, couple orientated and just me. So for instance when I finish writing this blog I am going to play a computer game just because. </span></li>
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<span style="font-family: Georgia, Times New Roman, serif;">Self awareness is a powerful tool, I have not quite got it worked out yet, I have realised the above things are happening but man it is a lot easier said than done to work on them. Starting to do something and stopping is really frustrating but I must just start and stop condemning myself if I don't succeed all the time. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">If you are interested in reading a few articles about self care and being a special needs mum you could check out these articles <a href="http://supportforspecialneeds.com/2014/07/02/is-self-care-possible-in-special-needs-parenting/" target="_blank">is self care possible as a special needs parent</a> and <a href="http://out-of-sync-child.com/articlesinterviews/taking-care-of-yourself-when-your-child-has-special-needs/" target="_blank">tips for taking care of yourself when your child has special needs</a>.</span></div>
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Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com3tag:blogger.com,1999:blog-3258388530422204617.post-50144004239946575552014-05-24T22:26:00.002+08:002014-05-24T22:26:34.837+08:00courageous parenting... <div style="text-align: justify;">
<span style="font-family: Georgia, 'Times New Roman', serif;">Now to begin this post I must mention a few things, now as you might have noticed (I hope you have) it's been quite some time since I have posted, life has been very very full! My second confession is that sometimes I find my blog helpful in processing and recording information that I am researching and studying and it helps me to process it as well and it makes it easy for me to find links in the future. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">As a parent of two kids with special needs from time to time you attend a workshop that may address some of the issues that arise. Today was helpful because it was addressing the behavioural challenges that a parent may face. It was helpful for me because I had a few aha moments that completely made sense to me. There are a few points and subjects that made an impression on me. Most of which comes from research that someone else has undertaken</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">*<b> <a href="http://www.isec2005.org.uk/isec/abstracts/papers_m/myles_b.shtml" target="_blank">The Cycle of Tantrum, Rage and Meltdown</a><span id="goog_45544040"></span><span id="goog_45544041"></span><a href="https://www.blogger.com/"></a> </b>was developed by Myles and Southwick, they propose there are three stages that each child or adult goes through when they have a tantrum, rage or a meltdown. In Summary they are:</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Rumbling </i>just like a volcano sometimes there are signs that a meltdown can be on it's way. Be it sensory or from another cause a parent can prevent behaviours from getting worse by a variety of techniques (more details can be found by clicking on the link in the title) these are: "antiseptic bouncing, proximity control, signal interference, support from routine, just walk and don't talk, redirecting, and home base." Something that can be frustrating using techniques is not a recipe for success rather intuition and a parents understanding of their child can lead to a more positive outcome. Even more frustrating is at sometimes there is an escalation without a clear trigger or a sign of the rumbling process. I think trial and error and experience is the greatest ally. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Rage </i>when were first experience the meltdown experience at first you attempt to discipline, bribe and reason with your child to get them to stop having a meltdown. I have vivid memories of carrying a kicking screaming child to the car whilst in a shopping centre. Even now we still don't fully know the why all we learnt very quickly was that there aint nothing you can do once they have hit this stage but wait. Of course it is important to make the situation is as safe and private as possible. Sometimes after an incident there is a level of shame and having the least amount of witnesses is best. </span></div>
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<i style="font-family: Georgia, 'Times New Roman', serif;">Recovery </i><span style="font-family: Georgia, 'Times New Roman', serif;">as a parent is so crucial and it is so important to manage this stage well. Sometimes the child may not remember the meltdown or have no understanding of what happened or even that their behaviour was wrong. On a level aside from this theory I think that once it has been discussed or managed sometimes it is appropriate to discuss natural consequences, however there are a few must do's. Firstly it is important to judge your child they can be very vulnerable and it may not be a great idea to drum into them how much what they did was not appropriate if it shames the child and can cause damage to their self worth. Secondly and most challenging once the situation has been handled as parents we can not afford to be historical. We must move on and if we are struggling with this we need to do whatever is necessary so that we can move forward in our relationship with our child. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX5Pz1sMCnDjBJ2K3KK2rw3XC8NE1GuUlhAmdXKrS3G1twxG-b5DCeHJUUrdCKa6SGkabeA9GLvhdcGsupZP_ECtHMwgf1NjhusKi8pK3bAPLNIDAptr3pcmGAqQfKetGg-90yrA1j7z04/s1600/shameu.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: black;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX5Pz1sMCnDjBJ2K3KK2rw3XC8NE1GuUlhAmdXKrS3G1twxG-b5DCeHJUUrdCKa6SGkabeA9GLvhdcGsupZP_ECtHMwgf1NjhusKi8pK3bAPLNIDAptr3pcmGAqQfKetGg-90yrA1j7z04/s1600/shameu.jpg" height="304" width="320" /></span></a>* <span style="font-family: Georgia, Times New Roman, serif;"><a href="http://southdown.on.ca/publications/articles/Compass-of-Shame.pdf" target="_blank"><b><span style="color: black;">Compass of shame</span></b></a><b> </b>the behaviour can be challenging this concept however was the most thought provoking. When you have a child with special needs you attend a lot of therapy appointments and it is common that you are always trying to teach something, address something and life seems to revolve around not quite being enough. I think the most challenging is the thought that in getting help you can affect their self esteem moreso as they get older. So this whole idea of behaviour that shows that your child or adult is feeling shame is really challenging. The four reactions are the following avoid, attack others, self attack and withdrawal. I had some thoughts about the behaviour of my children and how their situation affects how they feel and how feeling different from others makes them feel. It definitely made me consider how to ensure my kids feel empowered by seeking help rather than feeling that we as parents are always critical of them. It also revealed to me some of the puzzling behaviour that my sons at school when he avoids using technology or equipment that will make his schooling easier. This concept of the compass of shame can reveal a pattern of behaviour that can be a sign of the underlying issue. I have seen some people when they feel inadequate or challenged they respond by attacking and undermining others. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><b>* Building Self Esteem and Confidence </b>as parents one of the most important tasks to lead to independence is this. If a child has not got a good self esteem they won't try new things, take a risk or be able to easily brush of the words of someone else who has hurt them. When you have a child with special needs the challenge is even greater. I have noticed in the process of helping them improve their speech or receive OT their can be a focus on the negatives. To get funding you need to be extremely negative and it is then easy to lose sight of what they are good at and how well they are actually doing. I try my hardest but I know the pitfalls and I fall in headfirst some days. So.. to build self esteem one needs to set their children some tasks, goals and skills to achieve. This may be extremely simple, but it can be easy to do things for them sometimes it is to avoid a meltdown or to save them, it doesn't build them up in some situations it actually tears them down. So my personal challenge is to work out what the kids need to do and what they don't need to do yet, remove the pressure from others family, school and their expectations and focus on what my child needs and where he is at realistically. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://members.iinet.net.au/~carsonst/PDF/manuals/self-esteem-manual.pdf" target="_blank">For more information on this subject please read this pdf on Self Esteem</a> produced by the Carson St School and Dolly Bhargava</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">For now this is enough for me to digest and think on, my next post I will post some more anxiety related information and more on our current journey as well. But yes today I got some more ideas on where I can go which to be honest it's been a while and I find even to have something to think on is encouraging as a parent.</span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com1tag:blogger.com,1999:blog-3258388530422204617.post-71969948609007972422014-01-25T12:44:00.002+08:002014-01-25T12:44:29.810+08:00grief the hidden journey<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, 'Times New Roman', serif;">Recently life dealt it's hardest few weeks or months, it all culminated and I felt punctuated by two appointments with specialists and surgery. To be honest at the time I was physically and mentally exhausted, after two full on days then we were hit with news, information that seemed to rock me big time. What eventually made me cry and properly was an ill timed moment with a cafe worker at a hospital. One of the only moments I actually had been able to speak back to someone who had treated me wrongly but promptly burst in tears once I got back onto the ward.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">One part of having children or a child with any different needs, or special needs is the hidden journey that we all walk, called grief. It's invisable and creeps up on you usually disguised at jealousy over someone discussing their child's success, or feeling cut up because a family member mentioned something that hurt, or realising in a tangable moment that your child has to do it tough. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><u>Stages of grief </u>when anyone discovers they are in the midst of grief the 5 stages of grief can be the first point of reference in understanding the process and I think honestly people want to know when is it going to end. As a parent and in most cases grief is not accompanied by death, grief can come in waves and be a continual process. The stages are as follows, denial, anger, depression, bargaining and acceptance. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Honestly at first I didn't recognise what was going on, it's been coming for a while and I didn't see it. But for about a week I couldn't stop crying anytime I had any moments for myself I would burst into tears. I felt vulnerable, raw and like I couldn't even answer the phone. Like I didn't even feel understood. Brokenhearted was how I felt, like I could just keep crying and crying and I felt so depleted. Was it tough, yep, but I knew it was important to get it out of me just for a little while. It was a little ugly yeah I'm a Mum who's trying to lose weight that went out of the window for a week or so or maybe more. It looked like a cake of some description each day, even a chocolate too, I think one night I may or may not have consumed a block of cadbury's popping candy jellybean chocolate. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwzLY7dvJ0nZEG5RcAnzw9gA3wK8CZWo4rodZM8Nu0oQtQW2pfp1IQUbFmtn-3IU-tsNtfQidfBTCZMPvSGXOQiLhkletjyXhSahVqWau7qPnC8rAEfb8415_o3oTRitXeu_XGNCvNQ1y_/s1600/grief+%25281%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwzLY7dvJ0nZEG5RcAnzw9gA3wK8CZWo4rodZM8Nu0oQtQW2pfp1IQUbFmtn-3IU-tsNtfQidfBTCZMPvSGXOQiLhkletjyXhSahVqWau7qPnC8rAEfb8415_o3oTRitXeu_XGNCvNQ1y_/s320/grief+%25281%2529.jpg" height="320" width="320" /></a><span style="font-family: Georgia, 'Times New Roman', serif;">It was back to first aid, it's a phrase I think of sometimes when it gets down to basics. I start with good sleep, good eating, and exercise and a little me time. What also helps me is my faith, straight after I realised how I was feeling I made a beeline for church the very next service they had. What helps me is the music, often intimate and open, often when I put up walls (you know what I mean) in those moments they come crashing down. I find when it gets tough I run to God and pour it all out to him (Read Psalm 62:8) lay it all out, cry it out even scream it out when appropriate. It's my go to when I don't know what to do. When I am at home, I just listening to some quiet music and just had a bit of space, a great place is also the shower who knows why it is nice to cry in the shower too. Next I take time to spend alone with my husband, chances are we are going through this stuff together, so a few date nights were in order and totally helped us get some refuge in the craziness. In the midst of tending to our boys one of which was in quite a bit of pain from the operation that he had. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">So what did I learn through all of this, sometimes being a parent is really hard work, secondly sometimes it doesn't hurt to say no when were not coping, I need to listen to myself more and lastly I really need to organise respite better for 2014. The bad news that I did have, I really won't know what will happen until a few months away, so for now I need to chill out and not worry about the what if's in the meantime. Besides I have got enough to do anyway!</span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com1tag:blogger.com,1999:blog-3258388530422204617.post-46112567124378339082013-10-30T21:28:00.001+08:002013-10-30T21:28:36.290+08:00understanding and communication <span style="font-family: Georgia, 'Times New Roman', serif; text-align: justify;">Have you ever had the feeling you have been misunderstood, I had a really positive experience for my son today but for some reason it feels sad. Today for the second time in a speech therapy sense (other areas is different) I felt like my son was understood, now this wasn't in the sense that she had all the answers but she did have some. Last year we had a pscyhologist raise the question of whether or not my son had autism, I have discussed this in a recent post but not how it felt to me. I know my boy as well as I can and in this instance I felt that he wasn't understood at all, it didn't seem to matter what my opinion was she had 20 years of experience remember, she didn't consult his psychologist who sees him and has done for over 3 years. It was her opinion that she gave after two appointments and this was after asking for her opinion which took 3 months for her to get back to me. So from that moment it felt like he was labelled and even though I didn't agree with it, I couldn't shake it from him. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFpj2B99rgc6h20zSXqQJhMaFeCEocW05zCPXo5pubaNK5aDJz9OChUW9bRpBWiUURCFHMgHyYFJRQcOWyx0ZswsrKGgPKixkDMSrIeWJiyBwrJthgNjarisZBvusHN7YoQzv3mKm1Ul_g/s1600/sm.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFpj2B99rgc6h20zSXqQJhMaFeCEocW05zCPXo5pubaNK5aDJz9OChUW9bRpBWiUURCFHMgHyYFJRQcOWyx0ZswsrKGgPKixkDMSrIeWJiyBwrJthgNjarisZBvusHN7YoQzv3mKm1Ul_g/s1600/sm.jpg" /></a><span style="font-family: Georgia, 'Times New Roman', serif;">So the last few months we have been on a journey in March we began medication after much soul searching and this has made a huge difference for him. </span><span style="font-family: Georgia, 'Times New Roman', serif;">We told people that our child was a chatterbox and the shock and disbelief was written all over their faces. It felt like my child wasn't known, wasn't understand and no-one knew what he was thinking about how he felt and what he wanted to say. After some success in Perth at an OT (random good results) he started speaking at school. It has been a journey still frought with moments of anxiety and different problems we thought he would generalise slowly but instead he did it way too fast and we weren't prepared for other issues. We discovered he is a little behind in some of the social norms for his age because he wasn't speaking and only in that area. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Today was part of that journey he was getting assessed for his speech his first real assessment when he can actually speak to the therapist it is the first time he is 7 years old. After all the anxiety that I have been holding in and thinking about today it was all dissolved just like his psychologist she could see my real boy who has some serious something going on with his speech but she said that his behaviour and speech is "outside of the spectrum" numerous things he was able to do and say showed that his behaviour was not consistent with a child who had ASD. As I had asked that they would write a short email/report/summary for the paed's reference it was even asked if it would help to address the criteria and how it relates to Josiah so helpful and also might I add it's nice to be listened to and not told I have 20 years of experience in this industry. </span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;">So now we are coming up to the Paed appointment I have been dreading because I let him know let's wait six months and see how he is going and then let's discuss the autism question then. In preparation we have just managed to see a speech therapist who has dealt with Selective Mutism and Autism as well so suitably qualified. Now you have to understand it has not been easy we have had good speechies but some were horrible, one said I don't know how I'm going to work with him if he won't talk to me, I have other children who need help too. And the reactions from people if he doesn't speak to them. I have the feeling that some people wouldn't talk to him because he didn't talk back they were offended and often would say rude things back. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC-Zs-MtpDbxstXDmCAlB7FV5s3nNZL1Cw2p5kduBFGYs1AJqsfk7OSDCI5gcnLAhWfqZc4sm8FI9o-Q0tH70k9MiIZKl87LFuwp0a7asVmiWg4ja6T9Nq4Czt8fCgNEsIBtUpqQaa-ZVw/s1600/sm3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC-Zs-MtpDbxstXDmCAlB7FV5s3nNZL1Cw2p5kduBFGYs1AJqsfk7OSDCI5gcnLAhWfqZc4sm8FI9o-Q0tH70k9MiIZKl87LFuwp0a7asVmiWg4ja6T9Nq4Czt8fCgNEsIBtUpqQaa-ZVw/s320/sm3.jpg" width="320" /></a><span style="font-family: Georgia, Times New Roman, serif;">No he wasn't naughty and yes he does want you to speak to him and yes he can understand every horrible thing you are saying. No it's not ok to put him on the spot please wait for him to warm up first and you know what I don't want him to talk to strangers in the shops so little old lady I don't care if he doesn't talk to you because it doesn't matter it really doesn't matter. It doesn't matter whether or not they say hello or goodbye or please, it matters how they act if he is rude, their lack of speech doesn't make him rude so give him a break. And lastly if you spent time with him properly without the expectation you may earn the privilege of him speaking to you it's not a right. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Now I got that off my chest I can breathe a little more, so today was a better experience I must say the expression of understanding how hard it must have been for him, no-one ever said that before NOBODY. That he has a love for communication and that some children are naturally quiet he aint one of them. When he spent time with this speechy it was almost like he did better because she was there encouraging him and telling him to do it when he was doubting himself. He did such a great job with speaking and engaging in a long conversation with her as well as retelling a story I was so proud. I have to say when we are properly understood and being free to be who we are meant to be no expectation of anything that is when we truly excel. It looks like we might be in for a good block of therapy sessions ahead if this is just the beginning. </span></div>
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Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com4tag:blogger.com,1999:blog-3258388530422204617.post-88535857028207801502013-10-24T13:02:00.001+08:002013-10-24T13:02:38.610+08:00How clean is your house?<div>The day was coming we had a rent inspection and I found myself thinking how similar a rent inspection is without the help. It almost feels like the cameras are coming to your doorstop and that they are going to have a white glove on their hand ready to inspect the dust and grime in your house. It's an intimidating experience at the best of times.</div><div><br></div>It's confession time now, I'm sitting down after my recent inspection exhausted but quite disheartened. Now we didn't do horribly but we got comments like little untidy, cluttered on the report. As a wife and a Mum it's hard to hear. Now I've never been a perfect housecleaner, but when people judge me for it I don't take it too well. But thinking over e last few months its been filled with working 1 and a bit days a week (which has been great)lots of therapy and quite a few trips to go to Perth to see specialists, I'm knackered, then last month we've been really sick. <div><br></div><div>It comes down to my values really, now when I think about it, my priority has been my three kids who are full of life and challenges, a husband who works hard for us and with us. The last month I struggled to even do washing or the dishes it was pretty bad, but that was how sick I got. So housework is not the highest of my priorities but it doesn't mean that I don't strive to keep it clean. The issue is just because you have got two kids with special needs does not mean that you don't have to hold your normal responsibilities which is tough some days more than others.</div><div><br></div><div>So right now I'm fully disappointed with myself a little but it guts you when you just can't do it all. Frustrating I'm sure you can relate what do you think you neglect because of your caring role?</div>Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0tag:blogger.com,1999:blog-3258388530422204617.post-87027846795930607522013-10-12T09:45:00.000+08:002013-10-12T09:47:25.409+08:00let's talk about the "r" word<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPJEEvAB1hxszwztQadGykNUfKeRR3_Ak_8OB-ushMyCdXD7FyUpdVZPP_VRuXin91ndOXLYNo4we1MHY_RqkygOhfRW8DSpVNr78YUBx4z3cDjcJhsL8BgtNPQhbBR6hq8ZAHepS5emow/s1600/island.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPJEEvAB1hxszwztQadGykNUfKeRR3_Ak_8OB-ushMyCdXD7FyUpdVZPP_VRuXin91ndOXLYNo4we1MHY_RqkygOhfRW8DSpVNr78YUBx4z3cDjcJhsL8BgtNPQhbBR6hq8ZAHepS5emow/s1600/island.jpg" /></a><span style="font-family: Georgia, Times New Roman, serif;"></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">So let's talk about something that almost seems like a swear word it's so hard to work out.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">"Respite" it seems like a while ago I was wanting to have the money so that I could organise respite and we then got the money but that was only the beginning I realised a lot about myself and also realised just saying get respite is as easy as it gets as it's hard going. Let's walk through my personal journey as a parent for a little while, I think talking about my feelings are a great start :)</span></div>
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<i style="font-family: Georgia, 'Times New Roman', serif; font-weight: bold;">Scared </i><span style="font-family: Georgia, 'Times New Roman', serif;">there I said it, we found a great babysitter and I had just got my kids registered for in home care. I found out that it would be really hard work to get the babysitter who mind you was pretty perfect, registered as a in home care worker. In the moment I realised that I had spent all this time invested in getting my kids to progress that I was so </span><b style="font-family: Georgia, 'Times New Roman', serif;"><i>scared</i> </b><span style="font-family: Georgia, 'Times New Roman', serif;">that some stranger would ruin it all. I had spent the better part of my son's life trying to help him get through this </span><b style="font-family: Georgia, 'Times New Roman', serif;">Selective Mutism</b><span style="font-family: Georgia, 'Times New Roman', serif;"> that I realised I was so flipping scared that someone would cause him to have a setback. I was in tears at the in home care place thinking about how much it just scared me to trust someone I didn't know with my precious kids. </span></div>
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<i style="font-family: Georgia, 'Times New Roman', serif; font-weight: bold;">Exhausted</i><span style="font-family: Georgia, 'Times New Roman', serif;"> at some point somewhere around the point that I become a parent of two precious special needs kids it got hard work. When it was just my eldest I could have a sense of management I had it organised, not so much now. Appointments are in plenty I am forever trekking up to Perth for another specialist appointment staying in a stupid hotel/caravan park, with my kids alone most of the time. I feel </span><b style="font-family: Georgia, 'Times New Roman', serif;"><i>exhausted</i> </b><span style="font-family: Georgia, 'Times New Roman', serif;">and over it, but I have to keep going. Some days it feels like it's never ending a lack of peace or normal seems to invade my mind. I'm over it some days I really am over it. I recently had to go to Perth with my boys when I was sick and I remember feeling like I just wanted to go home, I was so sick and just wanted to be home, but I had to be there it was not a nice feeling at all. But I got through it!!! And made it home too!</span></div>
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<i style="font-family: Georgia, 'Times New Roman', serif; font-weight: bold; text-align: justify;">Starved</i><span style="font-family: Georgia, 'Times New Roman', serif; text-align: justify;"> you see over the last two months it's finished now I did a marriage course with my husband. I can see the gasps now as you read this. You are thinking oh are they having marriage troubles, rest assured we are fine. But this I know my kids most important foundation is our relationship together. We spent 8 weeks of getting out on our own hubby had to work really late to make it happen but it worked. I realised that after spending time with him I was starved for his company </span><b style="font-family: Georgia, 'Times New Roman', serif; text-align: justify;">"alone" </b><span style="font-family: Georgia, 'Times New Roman', serif; text-align: justify;">plain and simple. It was important for us to have time together and it felt good to be just us!</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif; text-align: justify;">So that's how it is at the moment. We did get some respite which was great. I still am on this journey. I feel like there is a master plan for us to feel better in ourselves and as parents and I want to feel less exhausted over all!!! But it's a journey and we still haven't got it all figured out. It doesn't happen overnight and just because you get funding it doesn't mean that it's all lined up for you! There still is an emotional journey to trust someone else with your kids, to get the right person the right funding. I can see how some people just go nope it's just too hard. I tell you this I was really sick over this school holidays and one way that I coped was the respite that we did have, just a few hours each morning where I had some space with less kids made all the difference for me. This conversation I think though will continue as we work on this balance. If you are a parent to a child or children with special needs why don't you join me? And share your experiences below good or bad!</span>Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0tag:blogger.com,1999:blog-3258388530422204617.post-26006750835359689482013-07-31T22:15:00.000+08:002013-07-31T22:15:09.674+08:00goals goals goals...<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, Times New Roman, serif;">It's been such a long long journey in the beginning it was desperation, the knowledge that my dear child lived in fear, was not able to be free to be himself and free to speak. I thought it would be much shorter to resolve in hindsight, but now we are still on that journey though be it we have actually made it some way. It feels like long distance driving to be honest it feels like the journey is an eternity but when you look back you think it wasn't that long at all. The reason I am talking about goals is today it feels like we have reached a true milestone. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Just recently we spent some intensive time in Perth doing some treatment for other issues not as related to Selective Mutism; the effects were much more deeper. It's not often that I regret living in a regional isolated town but those few weeks I believe I really felt it. I spoke to an OT and mentioned his diagnosis of Selective Mutism and I have to admit that I was utterly shocked that this OT actually knew of his condition. Within a few short days he was able to speak to the OT's in Perth who knows where it all changed. It felt really strange like the bubble had been broken and he was not in mute anymore. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Honestly I feel isolated my children seem to find the most rare conditions and it is hard for others to truly understand the way it feels. Always thinking, feeling and planning for my child so that things can be just normal average and ok. I have felt like it's a glass wall I can scream all I want but no-one can hear me even worse they can't see me either. It's a nightmare that can be the reality of a parent with special needs. Then you meet someone and it feels like imagine your in those prison visiting areas and they can actually hear you understand you, they might not be on the same side of the glass but they are actually there. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Thinking back I have lost count of how many hours I spent planning working things out and hoping that one days things will change. Today was a glimmer of hope to see the joy on the teachers face "he spoke to me, not directly at me, but he spoke in a loud voice and he spoke to the aide". Then this afternoon in his regular psychologist session after some warm up time, he then talked to the psychologist in his normal voice chatted to her like it was common and they did it all the time. We could not stop smiling, I even took a phone call so that he could be alone with her and he kept talking. I think it made our psychologist's day for sure!! She has been working with him from the start and sometimes the original people never get to hear the child's voice when they recover. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">This ended in the ultimate moment, I had to put on my normal happy Mother teaching voice and act like it was normal. We went out to dinner to give him a bit of a reward for being so brave at school. So at this dinner I told both of my boys how to order their dinner what I expected them to say, it was a leap of faith, I had no idea it would work. The time came we practiced a few times and then the moment came. He answered the waitress and gave his order she didn't hear him properly so he had to tell her twice even and then his drink choice and his topping choice. My husband I just sat there dumbfounded, it was such a surreal experience. Onwards and upwards I say, today was baby steps but WOW, what a difference. Do I regret putting him on medication not one bit. Today says it was worth every single worry and concern. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">So what is next besides getting him to generalise his speech to all situations so that Selective Mutism is not part of his diagnosis. This point is the next stage to imagine life with out selective mutism. Thinking about social skills, there is so much that is learnt by being around people all the time and learning the norms of social interaction. The issue with not being able to speak is that you don't learn this through osmosis and he is going to have to do a crash course. Going to be interesting that's for sure, it was quite funny one staff member when we discussed this said that's ok we can handle that! Some goals are harder to reach but the trick is to hang in there long enough till you reach those goals and need to make new ones. Today was a glimpse of the future. </span></div>
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Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com3tag:blogger.com,1999:blog-3258388530422204617.post-83337735319530064132013-07-24T21:13:00.000+08:002013-07-24T21:13:27.750+08:00Every journey has a fork in the road<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, Times New Roman, serif;">We reached that point in our journey there was a very obvious fork in the road. As parents we had to make a decision and a hard decision it was. Confronting me was my ideals as a parent how great my vision was for raising my child, how wonderful their life would be came crashing down. Instead I see my precious boy imprisoned by fear and no-one could hear his voice, he was silent without a voice and we were struggling. Struggling to give him the confidence he needed, struggling to know what do do when nobody really knew how to help us to help him. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Two pivotal moments helped us to make this decision. My boy's anxiety had gotten so bad that he was assessed not very thoroughly I might add, by a well known psychologist in Perth. He struggled so much that she recommended that we go through the process of diagnosing my beautiful son with autism. This opinion threw me and I wondered had I missed everything. I wasn't confident with the opinion of this psychologist as her opinion including a sense, some vague feeling that he was on the spectrum. And it was accompanied by the line I have 20 years of experience, this invalidated what she said in my eyes (I'm naughty I know). Did I go through some soul searching you bet I did, I consulted people I trusted his psychologist and a dear friend to make sure that I hadn't missed anything. But the criteria never fit him and his behaviour for many reasons. I found this great article on a website which compares Selective Mutism and autism and the characteristics that makes Selective Mutism unique you can read this article <a href="http://www.selectivemutismcenter.org/aboutus/WhatisSelectiveMutism" target="_blank">here</a>.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Whilst this experience was so confronting and challenging I learnt something my boy's situation was so severe that he could be misdiagnosed. Once I worked through the emotions that I encountered with the assessment, I was able to concentrate on the working with my boy. The second pivotal moment for us come when after a session with his psychologist, I was talking with him about why he finds it hard to talk he said "I try to talk but the words don't come out". Honestly I can't remember how I replied but I believe in my heart that is the moment that I made my decision we had to do everything in our human power (and some of God's) to help my boy. If he is working hard and trying his hardest then as parents we need to do the same.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Now you might be wondering where the fork in the road comes in? Last year you might remember me doing a post about medication and the effects on SM and what the research shows regarding anti anxiety medication and how it can help those who are suffering from Selective Mutism. Part of this research was as a result of our paedatrician giving us a script for that next step. At the time we weren't happy to go ahead with that avenue of treatment. But right at that moment when my boy said to me "I try to talk but the word's won't come out" was when I knew the time was right for us. Now there are so many background components of my boy's life that had to be just right so that we could proceed with this. Such as funding for therapy, the right environment at school and so much more. </span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif; text-align: justify;">Just the other day I had to go to the doctor's to get a script for my boy as the silly chemist in Perth had lost it (long story) and I realised that I was still processing how I felt. I never thought my son would find life so hard that he needed medication to be ok. While waiting in the doctor's waiting room so much went through my mind what if the GP judges me, what if they question me and don't even give me a script at all. What if they tell me off and give me the kids don't need anti anxiety drugs. Just to go into that doctor's office to find out it was ok but I felt so awkward, raw and emotional having to explain a little to someone about what is going on. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><br />What was confronting to me is that why is it when it associated with mental health the rules that apply to every other sickness, don't apply to mental health. Just a few days earlier I had a discussion with my trusted GP about how to go on medication for mental health is actually ok and it shouldn't be any different. But the stigma remains. I know family wise it is not something that is encouraged is that the right word, I realise that is a little of the reason why I kept it within our family so that we could allow him and the medication work without any pressure. So we didn't tell anyone for a few months just while we were slowly introducing the meds and upping to the intended dose. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, 'Times New Roman', serif;">Making a decision can really be full on, just like the above picture the options don't feel clear at all. This one was one of our hardest that we made, it felt like this at first. But later as the journey wore on, the right time was upon us. It felt more like the fork at the top of this post. Can we see the where the fork leads nope! Oh I wish we could but we can't. This I know sometimes we have to make the hard decisions it doesn't matter what everyone else thinks, it matters what is best for your child. It means making a researched decision (believe me that side effects list freaks me out) and looking at all the options. When the time is right you need to be 100% behind what you are doing and for us it was a little easier keeping it to ourselves just for a little bit. Next post I hope to write more about how the medication is working for us and the interesting journey it was when it started!!! Not for the faint hearted this parenting business not at all. </span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com1tag:blogger.com,1999:blog-3258388530422204617.post-2234190342647465322013-07-20T20:29:00.000+08:002013-07-20T20:29:19.651+08:00we can all be superheroes too!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbD3ZCm16NutYeU2KlIp_tuS3-oRlmvEYdIxIdmmk7mXgZENUqaTqZo4IUZ9P7y2Fl8IV8n-S3XACmplB2VEAp5zwDltS-a27ZSqCjN8hro11juxPQHoR7jG91K9CkfazlFoMudNjMjR9j/s1600/1-Andry-Rajoelina-600x600.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbD3ZCm16NutYeU2KlIp_tuS3-oRlmvEYdIxIdmmk7mXgZENUqaTqZo4IUZ9P7y2Fl8IV8n-S3XACmplB2VEAp5zwDltS-a27ZSqCjN8hro11juxPQHoR7jG91K9CkfazlFoMudNjMjR9j/s200/1-Andry-Rajoelina-600x600.jpg" width="200" /></a><br />
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To be honest this whole superhero business does not interest me at all, but in this situation I will indulge all of those who love them and write a blog about superheroes. Some days it feels like we can't do it the task of being a parent, then adding special needs can actually feel quite daunting, impossible, depressing and then inspiring, encouraging and faith building. If you feel like you are residing in the the first section this is for you! Now this is the fun part, often I think that being a parent means that we have to be superhuman, even a superhero. But to be a superhero you need to harness your superpowers:) I know cool hey?</div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Superhero power #1: know thyself </i>say goodbye to comparison, self loathing and negative talk. You can not be a superhero if you don't know you are, own it and love it!! This can be a life long struggle for some. But when you are exhausted and sometimes at crisis point what will sap your life out of you is self doubt, loathing and other negative feelings and thoughts!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieLyAy9xnsvKjk1k3cQOLDe7gxNyrkpYlmoJYr61xtbIzsvUASWgXgwmGRJ_d-xCnSQT239UpNDjEyqiyUrc9JlgfHnaKTsKqgIdkI8fH9Qd_LCPn1nXo-1ZqA8eaDLeE7Z4rh0plVtH8a/s1600/wondermumsd.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieLyAy9xnsvKjk1k3cQOLDe7gxNyrkpYlmoJYr61xtbIzsvUASWgXgwmGRJ_d-xCnSQT239UpNDjEyqiyUrc9JlgfHnaKTsKqgIdkI8fH9Qd_LCPn1nXo-1ZqA8eaDLeE7Z4rh0plVtH8a/s200/wondermumsd.jpg" width="200" /></a><span style="font-family: Georgia, Times New Roman, serif;"><i>Superhero power #2 be content with what you have </i>This is a fine line to balance on yes we want to know where our children need to be and go, but it is different with us. Sometimes the trap of being a parent with special needs we see the grass is ALWAYS greener on the other side someone else got funding, equipment or services, their diagnosis gets proper funding and so on. Sometimes we need to fight and advocate for me, but sometimes we need to work with what we got and don't waste our time on wishing for something we don't have. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Superhero power #3 we all need time out </i>Just this last few weeks I had some time without exercise and I was with my kids the WHOLE time. This I learnt I am not a better parent by spending all my time with my kids, I am not a better parent by not taking the time to exercise. In fact it's the opposite, I was crabbier, more stressed out and I feel like I was hanging on for dear life the whole time. It is so important to make time for us in the busyness of parenting it can be simple or complex but it has to be something. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Superhero power #4 get organised </i>Now I know all you busy people are looking at me saying I DON'T HAVE TIME!!! I have to be honest time management is a super power not all possess it, but we can all learn how to use it. There are many ways we can be organised make it simple, complicated but it is SO vital. If you want to manage the challenges of appointments and therapy and meetings you have to have some way of writing it down, putting it in your phone and communicating with those around us. This also includes our little super heroes. Empower them to feel confident and secure by giving them a general framework to their day, morning and even a written visual routine. </span></div>
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<i style="font-family: Georgia, 'Times New Roman', serif;">Superhero power #4 all super heroes have a hideout </i><span style="font-family: Georgia, 'Times New Roman', serif;">when our homes are invaded by villains at times it can feel like we have nowhere to go. But we all need to have a hideout. So... this means having a small routine for housework I do the one rule: one load of dishes, one load of washing and pick up clothes off the floor (or toys). So to be able to recharge somewhere in your home needs to feel like your haven/hideout. This can be your bedroom a nice bedspread cover, lamps, or even my favourite of cleaning the lounge room so when I sit down at night I feel like I can relax in my one clean room. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">This post is poking a little fun and enjoying things a little, but to be honest I know I feel like I need to have some superhuman ability to keep going some days but I do. As do many other superhero parents I know. Some who live on lack of sleep, deal with behavioural issues, health issues and insurmountable challenges. We are all superheroes I believe and being a parent comes in all different shapes and sizes but we are all superheroes!</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br />"The graphics in this blog article come from this blog, they are fantastic check them out <a href="http://elshangowuzhere.blogspot.com.au/">elshangowuzhere.blogspot.com.au</a>"</span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0tag:blogger.com,1999:blog-3258388530422204617.post-79520547079596529752013-07-17T20:48:00.000+08:002013-07-17T20:48:27.808+08:00sticking up for what is right, a short how to guide in not loosing your mind!<div style="text-align: justify;">
<span style="font-family: Georgia, Times New Roman, serif;">At this point to be perfectly frank I feel exhausted the added bonus of dealing with two children with special needs seems to be overstretching me. I adjusted to the demands of my eldest learnt coping strategies only to learn that I need to go another round and learn something new again! I am still learning and adjusting to my eldest journey and now I feel so exhausted. The most exhausting part of being a parent to any special needs child is the endless phone calls, paperwork, waiting, calling, researching it all come down to a daunting word called advocacy. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-kL7nkJUTuRAJ5J_fBUayfbTZTpfL8bv_mwOxCR5AqeSjDlWS-QgrAVkprg8ZzmjMsj5mQFHY16UwItqpTjvWdyIgUA9GAjQDzDBoW70sEMJ2S2d53GXNrY7kkFuX4M_7Td4efAlYHCXz/s276/advocacy.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-kL7nkJUTuRAJ5J_fBUayfbTZTpfL8bv_mwOxCR5AqeSjDlWS-QgrAVkprg8ZzmjMsj5mQFHY16UwItqpTjvWdyIgUA9GAjQDzDBoW70sEMJ2S2d53GXNrY7kkFuX4M_7Td4efAlYHCXz/s276/advocacy.jpg" /></a><span style="font-family: Georgia, Times New Roman, serif;">The most challenging part of advocacy is because it is sooo emotional. A situation happens at school or elsewhere you are dealing with a lack of a awareness, ignorance or worse indifference. As a parent and especially as a Mum we hit the outrage, overreaction button first. There is real chance that we could react prematurely before we have understood the whole story. Recently I was fortunate to attend a short self advocacy session at my local my time group and I discovered the following keys to successful advocacy</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><i>know yourself</i> - This is where every parent should start, when we come into a room full of people who we aren't sure are on our side, such as teachers, psychologists and other such professionals. It is easy to feel intimidated. So to be effective in advocating we first need to know ourselves, what are we good at, what aren't we good at (faking it sometimes isn't a great idea), what you know well. Think of your skills and write them down if you need to so that you know where your strengths lie. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><i>build relationships with those who are working with your child </i>when you are in conflict or you are working hard at advocating your child it is hard to make friends with those. I have observed others in the midst of their outrage at a situation essentially burn those bridges of those who could work with them; because of their passion. Building awareness is not about barging your way through life, but rather using appropriate situations to share your worldview with them. Sometimes acknowledging their hard work (such as a teacher) and sharing what you notice they are doing well will help them to be more openminded to your suggestions. Also it does help to go up the chain rather than jump a few levels, I believe it is respectful to allow the immediate person involved the opportunity to resolve the situation first. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><i>look after yourself - </i>Typical situation of a over worked mother, losing it over small things I use the term dino mum sometimes that is so me. Yelling over small things, having a cry. Looking after ourselves is the key to success. This includes eating well, sleeping well, exercising and spending time alone and with those who are special to us. Self care means that you know where your line is, so you can deal with the issue before it becomes a full scale meltdown. If you need it, taking it to that next level such as counselling, respite and time away such as a weekend break (I know it sounds hard to achieve). </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, Times New Roman, serif;"><i>know the system </i>your biggest weakness is lack of knowledge, if you are not informed it is much easier for a situation to get out of hand or to be simply unproductive in getting to the desired solution. Sometimes those who we are trying to work with are not unwilling but do not know the system either which means they may know they can access the help. At this stage it is useful to contact a local advocate such as the IDAS or your peak organisation in relation to the diagnosis of your child. If it is related to education it is possible to contact local heads and inquire anonymously to find out how the system works also. Some school's also have policies that you can read and provide a point of reference to point back to.<br /><br /><i>get the pieces of paper </i>when you are setting up your team this includes your specialists, your therapists and others that work with your child. Encouraging them to be a part of your advocacy journey sometimes makes the world of a difference. For some horrible reason unbeknownst to me sometimes the Mother's authority doesn't cut it or maybe we are so involved in the situation it is difficult for the other party to be openminded or to hear what we are saying. These people who are working with us have a lot of knowledge, passion, and advocacy power that can be so helpful. Also sometimes we need the right piece of paper to get things rolling for funding. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Essentially being a special needs parent can be compared to being a politician, lots of schmoozing, ad campaigns, and travelling too. Half of our job is done if we are able to build relationships with those who we need to advocate with/for or against. Sometimes this means just keeping our mouth shut when we want to say I told you so.. or I said this 6 months ago and you didn't think this was a good idea and so on. If the job gets done sometimes it is good to suck it up:) and just smile. </span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0tag:blogger.com,1999:blog-3258388530422204617.post-43387466947465403452013-03-25T12:29:00.000+08:002013-03-25T12:32:34.299+08:00NDIS: is the fairytale real, an explanation of the NDIS from a parent's perspective<div style="text-align: justify;">
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<span style="font-family: Georgia, Times New Roman, serif;">Now to be honest in the interest of disclosure I need to admit that I am skeptical, I am not sure I have any faith that this Insurance scheme might be the answer to the funding issues we experience. Let me discuss how it feels to be denied, to be told sorry your son doesn't fit our criteria. No we can't register your son. No we can't help you, no no no. Hearing that word over and over again. While carrying a burden in your heart to fight for your child, know that they are suffering and in a sense you are helpless to relieve it. To feel that you are waiting for a downpour of rain, a thunderstorm and all you get is a sun shower. Up until now I have had to fight for every small part of therapy and funding that we get and to be honest it's not a lot. I know there are a lot of other parents in the same position, desperate, exhausted and dry. I know this story is echoed through many households in this country.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">The challenge for me when thinking about the NDIS is to have an open heart and a open spirit, not to dismiss it before it has had a chance to show whether or not it will be of help to the thousands of households and families that are crying out for help. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Where do we start, I started at a NDIS workshop held last weekend. I have provided a slide on this process for the visual people. This is the information that I was given about the application process (quoted text is in italics):</span><br />
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<li><span style="font-family: Georgia, Times New Roman, serif;"><i>The person contacts the NDIS for assistance and can conduct their eligibility assessment. </i>This can be done either via phone or through the citizen portal online from April 2013</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;"><i>If not eligible , they can still access tier 2 supports</i> (please see N.B at the end of this process)</span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span></li>
<li><span style="font-family: Georgia, 'Times New Roman', serif;"><i>If they are eligible, they have a planning and assessment conversation with someone from the National Disability Insurance Agency. Eligibility is confirmed, the person can explain their goals and context, and they can have a assessment of their support needs. </i>This process is done a strengths basis, not a weakness basis. The present system relies on Carers and Parents to paint the bleakest picture possible to be even thought of being eligible for funding. </span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;"><i>Once assessed, the person chooses the supports needed to meet their goals and discusses how they will manage their plan.</i></span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;"><i>The person then manages and implements their plan, monitors outcomes and asks for a review if anything changes. </i></span></li>
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<span style="font-family: Georgia, 'Times New Roman', serif;">N.B Now to explain this further there are three tiers of support through the NDIS, the first tier is mainly about awareness, the second tier which provides information for those with a disability and their family and carers. Providing </span><i style="font-family: Georgia, 'Times New Roman', serif;">general information about the most effective care and support options within generic and community support groups and services. </i></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Tier 3, which targets 400,000 people who need specialised supports. Such as specific supports and facilities in the community, according to an agreed plan and resource allocation for each person. </i></span><span style="font-family: Georgia, 'Times New Roman', serif;">Tier 3 is where it's really going to happen for most people for example for those who need their child/adult in residential care or need round the clock medical care, or for someone who has a significant physical disability. </span><br />
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<b>The statistical side </b></i>At this point I need to bring up my first big issue with the NDIS, in my research (and hubby helped) we researched the Bureau of Statistics on how many Australians are living with a disability. </span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><span style="background-color: white; text-align: start;"><span style="font-family: Georgia, Times New Roman, serif;"><i>"Just under one in five Australians (18.5% or 4.0 million persons) reported having a disability in 2009. A further 21% had a long-term health condition that did not restrict their everyday activities. The remaining 60% of the Australian population had neither a disability nor a long term health condition. Of those with a disability, 87% had a specific limitation or restriction; that is, an impairment restricting their ability to perform communication, mobility or self-care activities, or a restriction associated with schooling or employment."</i> <a href="http://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4446.0Main%20Features42009?opendocument&tabname=Summary&prodno=4446.0&issue=2009&num=&view=" target="_blank">National Bureau of Statistics</a></span></span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">Not sure if you are as good at maths as me:) out of all the people that are needing services the funding support which is the biggest issue us carers and people with disability have. The government are catering for only 410,000 needing funding support. There are two likely outcomes and assumptions one can make either </span><b style="font-family: Georgia, 'Times New Roman', serif;">the government will go over budget</b><span style="font-family: Georgia, 'Times New Roman', serif;"> or </span><b style="font-family: Georgia, 'Times New Roman', serif;">that the criteria is likely to be too tight </b><span style="font-family: Georgia, 'Times New Roman', serif;">and a lot of people will miss out on assistance. Given that the statistics tell us that over 4 million have a disability the funding that the NDIS will provide represents 9.7% of the population who have a disability. </span></div>
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In reference to early intervention funding for example on my estimates (that is all I can give you) is that 13% of all children with a disability aged 0-14 have autism which is around 22,180 if you divide that in half and assume that these may be in the age of 0-6 needing early intervention, that is roughly 11,050 that have autism and may need early intervention funding. So in accordance with the statistics from the <a href="http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Main+Features30Jun+2012" target="_blank">ABS</a> this is in line with 1 in 8 statistic, so roughly 10,000 of the 80,000 figure for early intervention could be for Autism related disorders. The complex issue remains is that these figures are known to not truly reflect the rate and statistics of those with autism. "Recently, the Minister for Health in Australia stated: “There is no national data on the diagnostic profiles of people with autistic disorder and/or Asperger’s syndrome and/or pervasive developmental disorders.” (Campbell 2003, page 16680) and “the Government does not plan to establish central registers for autism, Asperger's syndrome, or pervasive developmental disorders. The provision of health and disability services for people with these disorders lies with State and Territory jurisdictions as is the responsibility for ensuring sufficient attention is made available from treating clinicians.” (Campbell 2004, page 19851)" Taken from <a href="http://autism.anu.edu.au/pdf_files/buckley_submit2.pdf" target="_blank">Autism/ASD Diagnosis rates in Australia by Bob Buckley</a> Evidence suggests that with the advances in diagnosis that this figure could be on the rise and continue to multiply. </div>
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<i style="font-family: Georgia, 'Times New Roman', serif; font-weight: bold;">In conclusion </i><span style="font-family: Georgia, Times New Roman, serif;">let's consider the facts the government has worked together to pass this bill recognising the lack of funding for this generation of disabled people and for those gone before us. Secondly they are at least making the decision to do something about it. My greatest fear however is that it won't be enough. I fear children just like mine will continue not to receive help because they are not disabled enough or don't fit a neat criteria box. However I am so overjoyed for the families living with a disability of someone who in the past has not received enough assistance and will now qualify for some real assistance in their home. They may able to access resources they never could be, this is a good thing. For any parent real funding that will help their child achieve their goals and meet their needs is a bit of a fairy tale one that we might read about, but may never become a reality. But... do we stop believing no! Like any fairy tale the happy ending is always preceded by a struggle, hard times and a villain (whoever you interpret that to be), we all hope that we might get the happy ending we are striving for!</span><br />
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Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com6tag:blogger.com,1999:blog-3258388530422204617.post-7604454120872383952013-03-23T18:02:00.000+08:002013-03-23T18:02:11.524+08:00Our Journey of Selective Mutism has joined twitter!<span style="font-family: Georgia, Times New Roman, serif;">Hi all, just letting you know that I have joined twitter, yeah I know I have taken my time. Please check out this blog's name: @oursmjourney I will be tweeting new blog posts as they happen. Watch out for a blog on:</span><div>
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<span style="font-family: Georgia, Times New Roman, serif;">- Follow up post on the NDIS</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- What really goes on in our heads when we discover that our child has special needs</span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com1tag:blogger.com,1999:blog-3258388530422204617.post-59412937743245857842013-03-19T21:01:00.001+08:002013-03-19T21:01:44.277+08:00the origins of the ultimate fairytale<br />
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<span style="font-family: Georgia, Times New Roman, serif;">For anyone reading that is not from Australia, please be patient with me whilst I discuss a Australia specific topic. To start with, I need to tell a background story, how we come to discussing the NDIS. Some time ago there was an inquiry into the state of disability services and funding in Australia. There is no surprise what was found when they delivered the results of their inquiry on the 10th August 2011. Some of the key points that they delivered were:</span></div>
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<li style="line-height: 1.4em; margin: 0px 0px 5px; padding: 0px 0px 2px;"><span style="font-family: Georgia, Times New Roman, serif;"><i>Most families and individuals cannot adequately prepare for the risk and financial impact of significant disability. The costs of lifetime care can be so substantial that the risks and costs need to be pooled.</i></span></li>
<li style="line-height: 1.4em; margin: 0px 0px 5px; padding: 0px 0px 2px;"><span style="font-family: Georgia, Times New Roman, serif;"><i>The current disability support system is underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports. The stresses on the system are growing, with rising costs for all governments.</i></span></li>
<li style="line-height: 1.4em; margin: 0px 0px 5px; padding: 0px 0px 2px;"><span style="font-family: Georgia, Times New Roman, serif;"><i>There should be a new national scheme - the National Disability Insurance Scheme (NDIS) - that provides insurance cover for all Australians in the event of significant disability. Funding of the scheme should be a core function of government (just like Medicare).</i></span></li>
<li style="line-height: 1.4em; margin: 0px 0px 5px; padding: 0px 0px 2px;"><span style="font-family: Georgia, Times New Roman, serif;"><i>The main function (and source of cost) of the NDIS would be to fund long-term high quality care and support (but not income replacement) for people with significant disabilities. Everyone would be insured and around 410 000 people would receive scheme funding support.</i></span></li>
<li style="line-height: 1.4em; margin: 0px 0px 5px; padding: 0px 0px 2px;"><span style="line-height: 1.4em;"><span style="font-family: Georgia, Times New Roman, serif;"><i>The benefits of the scheme would significantly outweigh the costs. People would know that, if they or a member of their family acquired a significant disability, there would be a properly financed, comprehensive, cohesive system to support them. The NDIS would only have to produce an annual gain of $3800 per participant to meet a cost-benefit test. Given the scope of the benefits, that test would be passed easily.</i></span></span></li>
<li style="line-height: 1.4em; margin: 0px 0px 5px; padding: 0px 0px 2px;"><span style="line-height: 1.4em;"><span style="font-family: Georgia, Times New Roman, serif;"><i>It would be the assessor and funder, but not the provider of care and support. Services would be provided by non-government organisations, disability service organisations, state and territory disability service providers, individuals and mainstream businesses. Increased funding, choice and certainty are the key features of the recommended scheme. Advocacy would be funded outside the scheme.</i></span></span></li>
<li style="line-height: 1.4em; margin: 0px 0px 5px; padding: 0px 0px 2px;"><span style="line-height: 1.4em;"><span style="font-family: Georgia, Times New Roman, serif;"><i>People would have much more choice in the proposed NDIS. Their support packages would be tailored to their individual needs. People could choose their own provider(s), ask an intermediary to assemble the best package on their behalf, cash out their funding allocation and direct the funding to areas of need (with appropriate probity controls and support), or choose a combination of these options.</i></span></span></li>
<li style="line-height: 1.4em; margin: 0px 0px 5px; padding: 0px 0px 2px;"><span style="font-family: Georgia, Times New Roman, serif;"><i>The NDIS would cover the same types of supports currently provided by specialist providers (but with sufficient funding), give people more opportunity to choose mainstream services, and encourage innovative approaches to support.</i></span></li>
<li style="line-height: 1.4em; margin: 0px 0px 5px; padding: 0px 0px 2px;"><span style="font-family: Georgia, Times New Roman, serif;"><i>The Australian Government currently provides funding to the disability sector of around $2.3 billion, while state and territory governments provide funding of around $4.7 billion - a total of over $7 billion.</i></span></li>
<li style="line-height: 1.4em; margin: 0px 0px 5px; padding: 0px 0px 2px;"><span style="line-height: 1.4em;"><span style="font-family: Georgia, Times New Roman, serif;"><i>A separate scheme is needed for people requiring lifetime care and support for catastrophic injuries - such as major brain or spinal cord injuries. Currently, many Australians get poor care and support when they acquire such injuries because they cannot find an at-fault party to sue.</i></span></span></li>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 22.390625px;">For families living with a disability the summary findings of this inquiry are no surprise. As parents we live knowing our children have a diagnosis that the government both state and federal are providing token efforts at supporting them, in the end costing the country far more. Not many families are ever financially prepared for the cost of having a child or family member with a disability, I wonder if we could ever be. </span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 22.390625px;">In the past I have discussed the lack of services for my children, the peak organisation that is supposed to support and fund services for disability in Western Australia has such strict criteria that most families living with disabilities are rarely offered the support they so desperately need. The issue of a strict budget associated with increasing need is an issue most governments have not had the wisdom to approach must less solve. Within speeches and policy statements the resounding message of a band-aid solution to the worst issues within the health and disability industries in our states. </span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 22.390625px;">The conclusion, the disability services that are provided and funded for in this country are often of a third world standard. I say this because we live in a flourishing country, we are blessed. However our children struggle to speak because of the lack of funding for speech therapy, those with permanent neurological conditions such as autism lose funding for services when their child turns six. In a country were we are wise and we know what to do, we are disabled by our lack of funding and initiative to do no further harm. In the next post I will discuss how from a carer's perspective the NDIS may impact you and your family. </span></span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0tag:blogger.com,1999:blog-3258388530422204617.post-75170025391081648122013-03-13T20:57:00.000+08:002013-03-13T20:57:16.872+08:00another way of treating Selective Mutism. Beware it's contraversial!<div class="tr_bq" style="text-align: justify;">
<span style="font-family: Georgia, Times New Roman, serif;">Now in the past I discussed the decision I have made in regards to medication in <a href="http://oursmjourney.blogspot.com.au/2012/05/to-medicate-or-not-to-medicate.html" target="_blank">"to medicate or not to medicate"</a> and I have been thinking recently on how I haven't thoroughly discussed the role of medication in treating Selective Mutism and at what point is it best to actually start down this mode of treatment. As my blog describes Selective Mutism is a journey and we all hope it is a journey that has an end, successes and some failures but we all hope that our children will recover, so what we do when it's not working? I think a parent needs to consider the following:</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- <i>Is the intervention program in place</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Firmly I believe for one to embark on the medication route it is SOO important to make sure that your child has the appropriate support in place. This includes a few things a school program (sliding in), the support of a psychologist and a paedatrician, parent intervention and exposure, an awareness of the complexities of Selective Mutism with all those working with your child. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- <i>An assessment of where your child is at</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">To know how far you have come, I think it is vital to know where they have come from using a tool such as the anxiety inventory scale that I have discussed before will be beneficial to assess how they are going. Also it helps us to identify where the focus of intervention should be placed and where the child is at in the stages of communication.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Most importantly I think we need to look at the symptoms of Selective Mutism that are present. I found this link from the SMART Centre really helpful and thorough, it even enlightened me a little please check this out and mark/highlight the symptoms that are seen in your child <a href="http://www.selectivemutismcenter.org/aboutus/WhatisSelectiveMutism#" target="_blank">"What is Selective Mutism".</a> If we identify the symptoms then we can see when they disappear and watch the transformation of the child. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- <i>Is your child willing</i><br />This is not the be all and end all, but I think knowing where your child is at will help you in your decision. How do they talk about SM are they wanting to speak or are they reluctant. This can help you make your decision about cognitively if they are able to understand what is happening inside of themselves, their mind and how they can overcome their condition.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Once you have considered these factors I think the next thing that is helpful for any parent is to look at the research and experience of others in treating Selective Mutism with medication.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">While researching for this blog I come across this question and answer newsletter from the Selective Mutism Foundation he discusses medication and how it works with Selective Mutism, you can read the full newsletter <a href="http://www.selectivemutismfoundation.org/dummit.html#" target="_blank">here</a> (I have included it below this post). It is wise to take your research further, what I found interesting was</span><span style="font-family: Georgia, 'Times New Roman', serif;"> the majority of studies in Selective </span>Mutism<span style="font-family: Georgia, 'Times New Roman', serif;"> and medication they refer to </span>fluoxetine<span style="font-family: Georgia, 'Times New Roman', serif;"> also known as </span>Lovan<span style="font-family: Georgia, 'Times New Roman', serif;">. Some studies that have been carried out on the effectiveness of </span>fluoxetine<span style="font-family: Georgia, 'Times New Roman', serif;"> and Selective </span>Mutism<span style="font-family: Georgia, 'Times New Roman', serif;"> are:</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861522/" style="text-align: justify;" target="_blank">Selective Mutism: <span style="line-height: 17px;">A Review of Etiology, Comorbidities, and Treatment</span></a><span style="text-align: justify;"> this article discussed Selective Mutism and the different models of treatment. The Author discusses the studies that have been undertaken in how medication can be used to treat Selective Mutism.</span></span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: small;"><span style="font-weight: normal;"><a href="http://www.nasponline.org/educators/selectivemutism_ho.pdf" target="_blank">Selective Mutism: A primer for parents and educators</a> </span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Amongst other information this author discusses that when behavioural interventions have not been successful"Given these cautions, fluoxetine, or Prozac, is an antidepressant medication that has been shown to be quite beneficial in treating Selective Mutism, particularly when combined with other learning or behaviorally based therapies. In most, if not all cases, the medication can be discontinued after the child begins normal speaking because the child’s speaking will be maintained by reinforcement in the natural environment."</span><i style="background-color: white; color: #333333; font-size: small; text-align: start;"></i><br />
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<span style="font-family: Georgia, Times New Roman, serif;">We can keep going as I discovered when I researched it, there is a lot research into the effect of medication in it's treatment of Selective Mutism. Now I have to admit there is a lot of negative press about medicating children. Some will tell you it is outright wrong. This I will say the opinion of a honest parent who wants the best for their child takes priority over other opinions. I don't believe for a second that a parent would medicate their child unless it is needed (maybe some). <br /><br />There comes a time when a parent of a child with Selective Mutism may need to consider medication and is it something that will help their child. This is not a simple decision. But one I believe needs to be made with deep thought considering the impact on their lives and the commitment to the progress that is needed. Medication without a intervention program in place before it is commenced is lazy and ill advised at best. The effectiveness of the medication is reduced if we as parents aren't taking the steps necessary to enable our children to overcome their fear. </span><br />
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<b style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;"><i>"You answered my question about Prozac in a previous newsletter. I’m ready to start looking into treatment for my twin 8 year old daughters. My question is: Who do I need to tell that they are on medication? Should I share this with their older sister, stepsister and stepbrother? I know of a teenager who was on Prozac when a friend found out, the whole school knew and teased her. Prozac has gotten such a bad “rap” I’m not sure who to share this with. </i></b><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">Confidentiality is important. Nobody but parents and doctors needs to know anything about the psychiatric treatment of your children. Even in our relatively enlightened modern times, there is still stigma attached to treatment for mental disorders. We all wish it were not so, but this is a fact of life. It may be difficult to hide the fact of medication treatment from family members, so a parental discussion with siblings about the importance of confidentiality and privacy may be a good idea. Teachers and classmates do not need to know details of treatment or medications and it should be the parent’s decision who is told anything about a child’s treatment. It is a private matter between doctors and patients and should be treated as confidential medical information as required by law. </span><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><b style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;"><i>For those of us who have chosen courses of medication to treat fairly severe cases of Selective Mutism, how long would you keep a preschooler on fluoxetine without significant improvement before you decide that a different medication should be tried?</i></b><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">The answer to these questions is not simple. In my practice, I have never encountered a preschool-aged child who did not respond to fluoxetine (Prozac). First, let’s define what is meant by “significant improvement” with treatment. Some clinicians and parents might view this as meaning completely well, with no signs of any emotional or behavioral problems. However, in research settings, it usually means that outcome measures showed statistically meaningful improvement with treatment, even when patients might still have “significant</span><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">improvement” with treatment. Some clinicians and parents might view this as meaning completely well, with no signs of any emotional or behavioral problems. However, in research settings, it usually means that outcome measures showed statistically meaningful improvement with treatment, even when patients might still have significant symptoms and not be considered well. I shall use it to mean something in between these two extremes: a child whom everyone involved agrees is functioning much better, even if some mild symptoms persist. </span><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">There are several possible explanations why a young child on medication might show inadequate response. Perhaps the lack of response is due to a dose that is too low. Some children have side effects, which necessitate using lower doses, but most children tolerate Prozac 20 mg per day very well, and I try to get all kids up to this dose, regardless of age. However, doctors with less experience treating young children may be overly cautious, and never raise the dose to the effective range. This is perhaps the second most common reason for the lack of pharmacologic response in proven psychiatric treatments in general. The most common reason is that the patient does not actually take the medication as prescribed and does not tell the doctor that they are not taking it, leading the doctor to conclude that the drug is not effective for the patient. </span><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">Another explanation is the time needed for medication response of social anxiety and mutism. Our first study of Prozac at Columbia University only measured treatment effects for 9 weeks. Many of the children were showing “reduced” social anxiety at the ninth week, but had not yet overcome the mutism in important settings like school. Dr. Black’s study at NIMH also found only partial improvement after 12 weeks. Our second study, designed to overcome this problem of time, examined effects of Prozac for 17 weeks. This study and clinical experience have shown that it may take 4 to 6 months at a reasonable dose to see a good response to Prozac, where a child is beginning to talk in school and has few symptoms of anxiety. </span><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">If neither of these reasons is true of the case in question, I would consider raising the dose and adding a behavioral treatment plan. If an increased dose is not possible, due to side effects, I might consider trying a different medication if a child has no improvement after 6 months on Prozac. However, this has never happened on one of my preschool-aged patients, so I do not have any experience with other drugs for very young children. </span><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><i style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;"><b>What drugs other than fluoxetine have been used successfully with young (pre-school) Selective Mutism kids?</b></i><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">As mentioned above, I do not have direct experience with other medications in very young kids. I do not know specifically of studies to examine the safety or efficacy of other medications in children under school age. Most research review boards have traditionally been reluctant to approve psychotropic medication studies in preschoolers, and our formal studies only went as young as age 5 after we showed the Institutional Review Board that Prozac appeared to be very safe in the 6-12 age group. In non-research settings I have used Prozac in children as young as four with good results. Other medications to consider include Luvox (fluvoxamine), which is similar to Prozac, phenelzine (reported in a single case report of a six-year-old with Selective Mutism). Anafranil (clomipramine), and some of the newer psychotropic medications for which use in anxious children has not yet been reported din the medical literature. Each of these has pros and cons as the next choice and none are formally FDA-approved for this use or age group (but neither is Prozac). Talk to your psychiatrist about these issues. </span><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><b style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;"><i>Are there any studies available (or even in progress) that discuss the long-term effects of fluoxetine?</i></b><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">There are not specific studies in children, to my knowledge, which address this question systematically with a long-term follow-up design. Prozac has been the top-selling antidepressant worldwide for many years now, and has been used by many millions of people. Post-marketing surveillance by the manufacturer reports of adverse effects of Prozac (as required by the FDA) has not detected any serious long term problems from the medication, even in patients maintained on it for several years for illnesses such as Obsessive Compulsive Disorder and depression. There are studies, which indicate that it does not increase risk of birth defects in pregnant women, an importing fining supporting its safety in general. There is no evidence to date that it has any long-term harmful effects.</span><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><b style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;"><i>I have twin eight-year-old girls (fraternal) both with Selective Mutism. In kindergarten, they went for “play therapy”, I was told they would grow out of Selective Mutism, just keep “gently encouraging” them. Now they are in third grade and attending therapy. This doctor is trying relation therapy. They will both talk at home to parents, siblings, and relatives. They will talk at relatives houses. They will talk to friends at our house. When they visit friends, they will talk to them, but not the parents or other siblings. They will not talk at a friend’s birthday party. They will talk at family parties, or their own birthday party. They won’t talk at activities outside school such as Brownies, or gymnastics. They won’t talk to their friends in school, not even at recess. They will whisper to their teachers, when the teachers request a verbal response. I have heard other children have been “cured” with Prozac; can you explain the pros and the cons? At what age or point would you recommend oral medication? Can you recommend another form of therapy for us to try? </i></b><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">This description of the symptoms of Selective Mutism in these girls is typical of children I have seen, although many children will not even whisper to teachers. This parent does not indicate whether whispering to teachers is a result of treatment or the girl’s baseline behavior. In the experience of patients who have come to play therapy, family therapy and me have not helped at all. More directive and behaviorally oriented approaches to overcoming anxiety have helped some children according to an uncontrolled case report literature (“uncontrolled” means the treatment lacked an experimental design necessary to prove scientifically that the treatment works and is more than a placebo effect). Such treatment should involve a stepwise “desensitization” plan for speaking in different settings, with rewards for each goal on the ladder, perhaps including, but not limited to, the relaxation techniques mentioned above. The idea is to start with the least anxiety-provoking new speech goal, such as speaking to a friendly neighbor, and as the child succeeds at the easier goals, gradually move toward the more anxiety-provoking goals, such as speech in the classroom. In my experience, if such behavioral treatment does not result in significant improvement in six months to a year (see the beginning of this column for my definition of improvement), it is time to try medication, since the child has not responded to non-medication treatment. </span><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">Prozac works to reduce the excessive anxiety and inhibition, which underlies the mutism. Over time, it resets the hair-trigger for anxiety responses described above. Children under about 10 years old usually get an excellent result in four to six months. Older children, who have been struggling with the disorder much longer, and are much farther behind in terms of social skills development, seem to get the reduced anxiety and inhibition from medication, but often fail to change speech behavior in school with the same ease as younger kids. They may need additional work on behavior skills to overcome the fear of speaking and try new social behaviors, especially in school. They are struggling with more than just the anxiety; they must fundamentally change their self-concept and develop new social behaviors that other children mastered much earlier in life. It is no longer a pure anxiety problem, but has also become a character development problem. This is why I tell parents not to wait too long to try medication if other treatments have not succeeded. In the case of the twins presented above, non-medication treatments seem to have failed for several years. It is time to add medication</span><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><br style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;" /><span style="background-color: white; font-family: Georgia, 'Times New Roman', serif; text-align: start;">The cons of Prozac are the possibility of side effects, which are typically mild, transient, and easily managed with dose reduction. Most children do not have any problematic side effects if the medication is started with a low dose and gradually increased. In children with Selective Mutism, the commonest problems include excessive disinhibition (an overshoot of the therapeutic response, easily managed by lowering the dose), insomnia, stomachaches or diarrhea. Also reported in adults, but uncommon in children, are headaches, appetite suppression and increased nervousness. Rarely, as with any medication, a rash may occur which required discontinuation of the drug. "</span></div>
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Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com1tag:blogger.com,1999:blog-3258388530422204617.post-36400643056900025222013-03-06T21:16:00.002+08:002013-03-06T21:26:44.510+08:00I will<div style="text-align: justify;">
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<span style="font-family: Georgia, Times New Roman, serif;">In the pressure of the chaotic moments of homework, cooking tea, getting ready for school in the morning and running backwards and forwards to therapy appointments. It can feel so crazy and busy. I took the time to listen to a song again that I heard on Packed to the Rafters, in a moment where the daughter was accepting her Dad's impending diagnosis of Dementia and the implications and changes that it was going to bring into their lives.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">While watching this moment, I thought of the way it correlates to my life. The moment of realisation and surrender and acceptance, in diagnosis and the process it entails. The moments were you see the struggle in your child's eyes. The proud feeling as you know they are trying their hardest to succeed. The despair when you are dealing with less than desirable behaviour. Realising that sometimes your child has to conquer things that you never thought that they would have to face. The moment where you get a hug, or they hold your hand or they talk to you or want to spend time with you. Our children are precious. Things may change but some things stay the same, I have thought of a few things that I feel in this moment</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I will fight for you to have the best opportunities in life</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I will try to understand you, to know you and to communicate well with you</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I will show my love for you in many ways</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I will tell you as often as I can how proud I am of you</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I will recognise your strengths and weaknesses and champion you on towards your goals</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I will celebrate with you and I will cry with you</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I will let you have a go, push you, empower you and sometimes makes things a little tough so you can grow</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I will do everything I can so that others can see the potential that I see in you, it's immeasurable. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><b>Most of all I won't give on you, I will continue to act, move and be the Parent that you need me to be so you can be all you can be. </b></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Short but sweet, I have been overwhelmed by this song and how it made me feel encouraged NEVER to give up. </span><span style="font-family: Georgia, 'Times New Roman', serif;">I feel tired, exhausted and brain frazzled some days. But oh it is worth it for my kids and it is worth it for your children too.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Be encouraged to keep going and keep laughing and loving. What you are sowing in deeds may not be realised immediately but one day yes one day it will bear fruit! </span><span style="font-family: Georgia, 'Times New Roman', serif;">As I write this I am nearly in tears, I am once again filled with purpose. What I am doing is worth the heartache, the blood, sweat and tears. </span></div>
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Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com1tag:blogger.com,1999:blog-3258388530422204617.post-47902717575924992262013-02-26T22:34:00.000+08:002013-02-27T07:51:30.534+08:00What not to say<div>
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<span style="font-family: Georgia, 'Times New Roman', serif;">Often you can feel it in the air an awkwardness exists too strong it is tangeable. When presented with special needs often people don't know what to say or they say what they think will help. This post I am going to bust a few sayings that drive us parents of special needs crazy!</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">1<i>. </i></span><span style="font-family: Georgia, 'Times New Roman', serif;"><i>God doesn't give you more than what you can handle.</i></span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;">Now I completely understand where this saying comes from, there is a verse in the bible that talks ab</span><span style="font-family: Georgia, Times New Roman, serif;">out temptation and it refers to how God will not allow us to be tempted beyond what we can bear. This is referring to temptation, not our situations, lives. Personally I find it difficult to comprehend how we are meant to handle childhood cancer, the death of a partner, marriage breakup or having a child with complex needs. The whole point is in my opinion is that we are not meant to handle this, and to expect anything less is not allowing people to own the emotions they are feeling. Anyone going through a tough time can actually feel guilty for not being able to cope which I think is the opposite of how we are meant to feel.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Now while I am at it, I'm also going to attack the <span style="line-height: 21px;">other myth "that they were given to you for a reason", honestly it gives the impression that there is either a super league of parents who are out there solely to be parents of those children. Or worse that the reason is that as a person or a parent we did something terrible that is the reason why we were given our child. You can see the vicious cycle. On the other hand I have heard an appropriate version of this is that "I don't understand why good people and good parents go through situations and diagnosis's like this, but it's happening more and more, God is trusting you with this child". I was on the receiving end of this comment and it reassured me, it said I don't get it, I don't like it but it's happening more and more. </span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">2. <i>The minimisers</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Honestly this hurts the most, you bare your soul to someone or a complete stranger and reveal what is wrong with your child and you are met with the following responses:<br /><br />- he looks fine to me</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- he'll grow out of it right</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- lots of kids do that</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- he doesn't look autistic </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">This is just the tip of the iceberg, in an attempt to make you feel better and for most people to feel less awkward these types of comments are made. I do think honestly they hope for us that our situation is not permanent, or they try to reassure us that our child looks normal. At time we are just asking for some understanding of how it feels, to get things out in the air or even to help you not judge our child for their behaviour. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">3. <i>The parenting police</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">These responses are the most frustrating and honestly usually a bit old school as well. People encounter a meltdown or other behaviour and are dismayed with what they see. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- cut the apron strings</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- all he needs is some discipline</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- back in MY day...</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- all he needs is a good spanking</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">There are so many assumptions made about parenting and special needs. These comments in themselves say the folllowing: you are a failure as a parent, why don't you control your child, I could do a better job at being a parent, your child does not have a diagnosis they are just being naughty it's all your fault. This is what we think in a situation where we are confronted with an opinion like this: you really have no idea what it is like to be me, don't you think I have tried EVERYTHING for my child to behave well, he/she is trying so hard to cope in a world that doesn't understand them and they have had enough, what about DCP (in reference to the spanking comment), in the middle of these situations sometimes we do wish the ground would swallow us up live or we are just trying to get the shopping done so you can eat something healthy tonight. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">4. <i>Joe Blow has this and the solution focused advice</i><br /><br />Some conditions get this more than others and I have to admit I have heard it more of autism than any other comments like "like the rain main" and my sister's husband's cousin has this are just the beginning. In the world of information, documentaries and the internet there is a lot of information and parents of kids with special needs get a lot of advice on how to cure their child of their diagnosis. Wouldn't we love it maybe, but does denying the problem make it better nope. This can be really difficult to apply but a little less advice is great if people aren't asking for it. Instead of offering advice when a parent shares their heart, just listen. We don't have to say ANYTHING we can just listen and try to understand, mirror back to that person what you think they are trying to say. There are a few benefits to this we really needs awareness of disabilities in our community so understanding is the first step, secondly parents can feel isolated and a listening ear can be really helpful. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>What can you do?</i><br /><br />Now I know I probably have pulled the rug out from underneath your and you are wondering what do I do now? This will help any parent:</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- Make a coffee date with us, we would love you to catch up with us even if you have to bring the cake and coffee to us.<br />- Offer to babysit or take our children out (we know it's big)</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- Be normal with us whenever possible and do a bit of reassurance when we are having a bad week or our child behaves badly in public</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- Have us over for dinner every now and again (or for some kids bring dinner over)</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- For the guys out there, please take the Dads out for a round of golf or another appropriate guy activity (note the word appropriate) especially if you are a Dad in a similar situation.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- Help us to look after ourselves this could include going for walks with us, checking in with us often to see how we are coping. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqWWudgVpUT7S7yCzQW2NYDXQwgEgNqDaZHyXhYyoSGQ1KdpNkVlQBc575dhzd0pbf2BWQ7rQ_di3LHj0HSn3B2JLHP1p50MyfuepUhwFkZZ2IibaiIk5tFqwH4WWyWKhuz2GCnbw0tt0i/s1600/coffee-and-cake.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="color: black;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqWWudgVpUT7S7yCzQW2NYDXQwgEgNqDaZHyXhYyoSGQ1KdpNkVlQBc575dhzd0pbf2BWQ7rQ_di3LHj0HSn3B2JLHP1p50MyfuepUhwFkZZ2IibaiIk5tFqwH4WWyWKhuz2GCnbw0tt0i/s200/coffee-and-cake.jpg" width="200" /></span></a><span style="font-family: Georgia, Times New Roman, serif;">Last of all I want to thank you for reading this blog, it might be a little contraversial or a little raw. But I guarantee (after a bit of facebook research) there are a lot of parents who have had a lot of things said to them that hasn't helped and cause them more grief and trouble, it's the honest truth. For those who are a friend to us, or a family member we need you in our life, we need community to get through the day to day and to help us not feel so alienated some days I feel like I live in another world or reality plane from everyone else and we need others to come and be in our world every now and again. Not to solve our problems or to fix everything but to be with us and this makes the world of a difference.</span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com2tag:blogger.com,1999:blog-3258388530422204617.post-16395535988079417542013-02-18T18:00:00.000+08:002013-02-18T18:00:20.608+08:00back to school basics<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, 'Times New Roman', serif;">For the parent of a child with special needs going back to school can be rather stressful. Even more-so for parents of children with Selective Mutism. Essentially going back to school is fraught with anxious opportunities, thereby being a hazard for the anxious child, even a point where children can regress. How do we navigate this process well?</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><b>Laying the foundation</b></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>- Set up a meeting</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">This process will be different if you are starting school fresh, or if your child has been recently diagnosed. Introducing Selective Mutism can be incredibly daunting as the lack of awareness is quite a challenge. So first up meeting school staff is important and if at all possible to do this before school even starts. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">-<i>Find out what funding is available</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Most of the information on Selective Mutism is based in other countries and not quite relevant in terms and the accommodations they will have available for each student. In Australia the systems are different for each state and it is also different for if your child attends a public or private school (independent). To enable the school to apply for funding they will need the following</span></div>
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<ul><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9OJ8s-JIXtuspUPOLl_89iQN2nHGwRSeTkZ-Xu6b7bZHThzl_liGajZJuGNRNhyphenhyphenpRazXHr8U1pzep3bYn0cceliNWtAfhfC1-AtnlHOdW6OPj69Y6HeOnkBd9fgwUbJbw-w2Uf_I6M20i/s1600/foundation.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="161" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9OJ8s-JIXtuspUPOLl_89iQN2nHGwRSeTkZ-Xu6b7bZHThzl_liGajZJuGNRNhyphenhyphenpRazXHr8U1pzep3bYn0cceliNWtAfhfC1-AtnlHOdW6OPj69Y6HeOnkBd9fgwUbJbw-w2Uf_I6M20i/s200/foundation.jpg" width="200" /></a>
<li><span style="font-family: Georgia, Times New Roman, serif;">Pediatrician report, stating diagnosis and if possible the accommodations that is recommended for the student</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;">Speech Assessment report, often children with Selective Mutism can also have speech delays because of the lack of social interaction because they aren't engaged in as much verbal interactions. </span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;">Any other relevant diagnosis reports and information helpful for the school.</span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;">Information on Selective Mutism as based on the DSM 4 (or very soon 5) for the school to reference too. </span></li>
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<span style="font-family: Georgia, Times New Roman, serif;">If you discover some resistance to applying for funding, Selective Mutism is a mental health issue. From my experience I found that the area of funding is under the same area as Autism and other conditions like it, it comes under the Severe Mental Health banner. Each school area has different deadlines, so it is helpful to know when these deadlines are, for example information can be needed in term 3 of the previous year. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">-<i> Ask for information about your school's inclusion policy, their special needs policies and procedures and information about how they manage IEP's</i><br />It sounds very formal but this information will be of help now and the future. Understanding how your school approaches special needs and the resources they have available should it be needed will start things off on the right foot. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Other resources helpful for Selective Mutism:<br /><a href="http://www.selectivemutism.org/resources/library/SM%20General%20Information/Top%20Ten%20Myths%20about%20SM.pdf" target="_blank">10 Ten Myths about Selective Mutism</a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.selectivemutism.org/resources/library/School%20Issues/BackToSchoolHandout.pdf" target="_blank">Back to school Transition for Selective Mutism</a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="https://docs.google.com/file/d/0B2IuZ2Q9h3XQZDVjOGZkM2MtY2IyOC00ZjhlLWIxYzMtOGZkNjFjN2FmMDk3/edit" target="_blank">Addressing the issue of Speech Anxiety with Selective Mute Child by Maggie Johnson</a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="https://docs.google.com/file/d/0B2IuZ2Q9h3XQMjdjYmYwYmQtOTJkNy00NjhiLWE5YjUtZDc2ZmEwZjM1ZGI4/edit" target="_blank">General Management of Speech Anxiety in Everyday situations by Maggie Johnson</a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="https://docs.google.com/file/d/0B2IuZ2Q9h3XQYTJlNjk2NTktOWJhMC00ZWVhLThhYTctN2FjODliN2RkMjEz/edit" target="_blank">Supporting children with Speech Anxiety in School by Maggie Johnson</a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="https://docs.google.com/file/d/0B2IuZ2Q9h3XQYjUzMzY1YWYtMzUwMi00NzljLWFjMjUtOGZhYmUwODZlOWYx/edit" target="_blank">Social Communication Comfort Scale</a> </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">an essential tool to show the progress of our children with their speech and overcoming Selective Mutism, to be used in conjunction with the <a href="https://docs.google.com/file/d/0B2IuZ2Q9h3XQaVQxbndsQmQ5Snc/edit" target="_blank">Social Communication Anxiety Inventory Scale.</a> </span></div>
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<b style="font-family: Georgia, 'Times New Roman', serif;">Painting the picture</b></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;">Knowing your child well, will help your teachers teach your child better. Often we discuss our child's weaknesses, but we fail to mention our child's strength's what they like what they don't like, what works with them. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWDR2HfdLvYhMDfK5mFw5UJsJvCGI5f8n40vuNmMrNnUOVfDX83GRu9Ds2R7Ml_ZgV-uR3M58kaBcSivvDoBmhc9mf5wwkO4KSEGgx3dKkUJUTemfEAZP3rX7rQ32xPp18e5Z3kqUbYiQ7/s1600/paint.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWDR2HfdLvYhMDfK5mFw5UJsJvCGI5f8n40vuNmMrNnUOVfDX83GRu9Ds2R7Ml_ZgV-uR3M58kaBcSivvDoBmhc9mf5wwkO4KSEGgx3dKkUJUTemfEAZP3rX7rQ32xPp18e5Z3kqUbYiQ7/s200/paint.jpg" width="200" /></a><span style="font-family: Georgia, Times New Roman, serif;">- <i>allow your child to have one on one time with the teacher or teacher's aide</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">In the busyness of a classroom, it can be hard for a teacher to get to know your child. A little one on one time can make it easier for your child to form a trusted relationship with the teacher or aide, this is really important for children with Selective Mutism. In this time it is great to encourage the child to share something he/she likes this can help share interests. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- <i>write a communication passport</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">In the case of children with Selective Mutism it is VERY hard for adults who are involved in their lives to get to know your child. A communication passport is a book that a child can have a school that can take the place of a introduction and explains the ins and outs of your child in a positive way. You can list your child's diagnosis, their preferences, their strengths and how to work with them, don't forget your child's interests as well. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- <i>keep it written</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">When working with children and anxiety and special needs, it is really important not to discuss their issues in front of the child and it is important to set a boundary in this area. A common practice is to use a communication book. This is great for sharing how your child is going, share successes and if they are feeling more anxious than normal. It can also be used as a record for future purposes. </span><span style="font-family: Georgia, 'Times New Roman', serif;">Also when communicating with staff it is also great to do it in writing for example using email. </span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;">Further reading:<br /><a href="http://www.islington.gov.uk/publicrecords/library/Education-and-skills/Information/Guidance/2009-2010/(2009-06-02)-Plenty-To-Declare.pdf" target="_blank">An article on a school using communication passports</a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.scope.org.uk/sites/default/files/Scope_communication_passport.pdf" target="_blank">A how to guide to write a communication passport by Scope</a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.scope.org.uk/help-and-information/publications/communication-passport" target="_blank">A template to use to write your own by Scope (these guys are great) different formats too </a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.ladybugsteacherfiles.com/2011/08/oh-boy-another-freebie.html" target="_blank">Communication book templates by a teacher, some of which are very cute</a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><b>When things go wrong</b></span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;">We don't really want to think about this at all, but it might just happen. Sometimes things go wrong sometimes it is the teacher sometimes it is other students. Here are some tips to help you on the way (I am still working this out)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgobmZMeDZZMg_ZIXF92YqRkbY7P9k6AQJol1GTnJdRwYqrEQqBxe37RpJg3WzZcEFOIkFjjTsFilPhKATF3x6OGcord0LIsfX_21NJwxx4Byt0W2UzY9PBpNds2yOcg6zb4P1gVdL9x3Jv/s1600/conflict.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgobmZMeDZZMg_ZIXF92YqRkbY7P9k6AQJol1GTnJdRwYqrEQqBxe37RpJg3WzZcEFOIkFjjTsFilPhKATF3x6OGcord0LIsfX_21NJwxx4Byt0W2UzY9PBpNds2yOcg6zb4P1gVdL9x3Jv/s200/conflict.jpg" width="200" /></a><span style="font-family: Georgia, Times New Roman, serif;">-<i> Use your child's communication book</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">When things happen this is your first point of call, write down the incident or whatever is bothering you. Avoid using emotional terms and try write things as objectively as you can without pointing the finger at anybody, for example "saying you did this". Also if your child relays a situation to you, let the teacher know what your child said and then ask what happened. Sometimes a child can hear a few words out of context as kids do and the situation might have actually been different (N.B I didn't say our child lied). </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- <i>If it is something that is serious</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Give the teacher a chance to respond, I have found asking the teacher to give me a call gave me a chance to speak to them when they were ready. It takes a lot of guts to approach and confront an issue. It is better to do this in a safe place. So using the communication book to communicate what happened and ask them to call you if that is relevant. I had one situation where this was appropriate and it worked really well. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- <i>Follow the chain of command</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">If you want the teachers to respect you and your opinion, offer them the same courtesy when at all possible. Deal with the issue with the person the issue started with. Start with them and then work your way up. Sometimes we can get really involved in the incident and we get worked up and want to go to the top first. But if we give the staff member the opportunity to work it through with you shows respect and it also helps them. We don't often think of the ramifications of our actions and if we have a good teacher then we don't want to get them into strife with their bosses if it isn't necessary.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">- <i>Be the voice</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">You are your child's advocate, in laying the foundation I suggested you get the information about your school's policies so that you know what is what. This way when push comes to shove and you need to keep asking for the school to accommodate you have more authority. Sometimes unfortunately we advocate and communicate well, this does not mean we have to put up with their decision we just need to decide if it is an issue worth taking further or not.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Next post I will discuss further how to stage and carry out a intervention program for a child who has Selective Mutism in the school environment. </span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0tag:blogger.com,1999:blog-3258388530422204617.post-87645879784438869492013-02-10T20:32:00.001+08:002013-02-20T20:32:06.301+08:00Watch and Learn: a webinar, ABCs and 123s: Preparation for the Next School Year<a href="http://www.childmind.org/en/events/2011-5-19-abcs-and-123s-preparation-next-school-year" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;" target="_blank"><img border="0" src="http://dafjmlate1fc5.cloudfront.net/images/cmn/logo.png" /></a><span style="font-family: Georgia, Times New Roman, serif;"></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Having a rare condition, sometimes it is just nice to hear people talk about your child's condition. One of the main organisations that deals with Selective Mutism, the Child Mind Institute has been running a few webinar's that I discovered recently. This one timely, all on how to handle the back to school transition, this includes also video demonstrations on how to encourage speech at school. Worth the watch, the end has some great video's. Please check it out, I think it would be also useful for teachers and speech therapists to watch. Unfortunately they only mention the American education system of special needs and it doesn't apply to Australians. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Click on the image to go to the link to view the webpage of the webinar, further down you will see, watch the webinar online link in the article. </span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0tag:blogger.com,1999:blog-3258388530422204617.post-23166791244593217512013-01-27T13:39:00.000+08:002013-01-27T13:39:35.425+08:00Removing barriers to engagement <div style="text-align: justify;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 18px;">Some time ago I wrote about <a href="http://oursmjourney.blogspot.com.au/2012/10/barriers-to-engagement.html" target="_blank">barriers to engagement</a> with children who have Selective Mutism, now I have been thinking on a follow up post to give those working with children or who are parents how to approach each situation with a chance of success.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 18px;">While reading on a facebook page called the <a href="https://www.facebook.com/autismdiscussionpage" target="_blank">Autism Discussion Page</a> in a post I read</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i><span style="line-height: 18px;">"</span><span style="background-color: white; line-height: 18px;">Parenting a child with autism often means wearing multiple hats (mother, father, therapist, teacher, researcher, advocate, social mediator, biomedical doctor, etc.). You have to continually multi-task to keep up with the chaos. Parents of young children on the spectrum often have an overwhelming sense of urgency, to do as much as possible to help t</span><span class="text_exposed_show" style="background-color: white; display: inline; line-height: 18px;">heir child overcome their challenges and develop and grow to their maximum potential. This is very understandable and recognizable in many parents of young children. However, we have found that often we move too fast in our urgency to provide for our children. The world moves way too fast for these children, and we need to slow it down to maximize learning."</span></i></span></blockquote>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 18px;">Now I have to mention this paragraph because it was this that caught my attention after my recent post <a href="http://oursmjourney.blogspot.com.au/2013/01/at-end-of-it-all-i-choose-who-i-am.html" target="_blank">at the end of it all, I choose who I am</a> discussing my heart ache when it comes to parenting a child with special needs and the demands it places on the parent. This small quote speaks to me also of the pressure we feel as parents to intervene in our children's lives to help our children to "overcome their challenges and develop and grow to their maximum potential".</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzit_fOC3HcKh1JH1ro8E-rdCNx-AERlCwFJXEtjaGJyDsxjO32nR445zVusvqdFruqg4gKD3VTOKVqiSPv7GfWPtjKBKlXWn6MLSJv6v38dXvJF8X_NPhlCiuWTuox69CJS5a2tPI4IwC/s1600/communication.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="199" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzit_fOC3HcKh1JH1ro8E-rdCNx-AERlCwFJXEtjaGJyDsxjO32nR445zVusvqdFruqg4gKD3VTOKVqiSPv7GfWPtjKBKlXWn6MLSJv6v38dXvJF8X_NPhlCiuWTuox69CJS5a2tPI4IwC/s200/communication.jpg" width="200" /></a><span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 18px;"><br /></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 18px;">For some time now I have been trying to understand what is different about how people interact with children and why do some people have a large amount of success and others don't. From observing parents who interact with my son I have noticed parents in particular who have children with autism actually seem to be able to engage with my son on a different level and make a large amount of progress in social interaction with my son in a short amount of time. This puzzled me as to what the difference was, until I read this discussion on "declarative and imperative language"</span></span></div>
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<span style="background-color: white; line-height: 18px; text-align: start;"><span style="font-family: Georgia, Times New Roman, serif;"><i>"When using words, use more "declarative language" instead of "imperative language." Imperative language is any statements that direct a specific response from a child (questions, directives, instructions, prompts, etc.). Declaratives are any statements that invite, but do not direct a specific response from the child (statements share information, ideas, thoughts, feelings, experiences and perspectives)."</i></span></span></blockquote>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 18px;">Now I don't know if this is a major revelation for any of you, but this totally relates to children with Selective Mutism. The nature of their diagnosis is anxiety and often the very style of therapy and interactions most people use with children actually makes their situation worse and they retreat further into their shell. If you struggle with anxiety being put on the spot and asked questions such as how are you today, say thankyou, say please actually increases the anxiety rather than reduces it. It is so frustrating to watch well meaning people who want to engage with my son sabotage the situation by not understanding these concepts. Relating to Selective Mutism, there is also a theory around communication load which supports this concept. </span></span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif; line-height: 18px;">In the past I wrote a short blog article on the topic of </span><a href="http://oursmjourney.blogspot.com.au/2010/08/communication-load.html" style="font-family: Georgia, 'Times New Roman', serif; line-height: 18px;" target="_blank">"communication load"</a><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 18px;"> the way we communicate has a direct relation to the impact and success of encouraging a child with Selective Mutism to speak, Maggie Johnson describes the Communication Load in terms of low, medium and high and also provides a description of activities that fit into each category, I have written a post on this topic with slideshow like pictures to describe the concept, please check out <a href="http://oursmjourney.blogspot.com.au/2010/08/communication-load.html" target="_blank">communication load revisited</a> here before you continue!</span></div>
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<span style="background-color: white; line-height: 18px; text-align: start;"><span style="font-family: Georgia, Times New Roman, serif;"><i>"Normal interaction between two people usually consist of about 20% imperative (questioning, directing) and 80% declaratives (sharing ideas and information). However, when we interact with children on the spectrum the ratio is turned around; usually 80% imperative and 20% declaratives. Children on the spectrum tend to freeze up and resist imperative language. They tend to have strong "performance anxiety" and pull back from imperative (directive language). Just like us, no one likes to be questioned, prompted, directed all the time."</i></span></span></blockquote>
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<span style="font-family: Georgia, Times New Roman, serif;">No surprise when reading this we actually find the same with Selective Mutism, when people don't pay attention to how they communicate and invite and encourage speech, it is so easy to be caught in the trap of questioning and directing rather than declarative language, this can also be described as commenting, statements talking as though they might respond but continuing if they don't take the opportunity. I wonder how much of our interaction is based on how we feel rather than how the child feels. It is incredibly confronting when a child doesn't respond verbally when we want them to. This author goes onto discuss how we can change or rephrase the way we speak it is also similar to the concept of open ended or close ended questions. He then makes the claim that we can "</span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 18px;">usually get three times more interaction from the child when we use declarative language."</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Once you have considered how you speak, the next stage is to actually consider how you respond when waiting. A popular concept with Selective Mutism intervention is to freeze the moment this applies to allowing your child to respond and letting them experience the space in conversation so that they have more of a chance to speak up. So once again reading this short post I find another concept that is also applicable to Selective Mutism treatment.</span></div>
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<span class="text_exposed_show" style="background-color: white; display: inline; line-height: 18px;"><span style="font-family: Georgia, Times New Roman, serif;"><i>"Learn to pause and wait! Children with delayed processing need time to respond. They have to process what is coming in, appraise what is needed, and formulate how to respond back. In our haste we often jump in and continue to prompt, or respond for them. Waiting is the hardest thing to do. It is much slower than our nervous systems want to wait for. It tasks patience and practice, but is very important. Slow it down, and give them a chance!"</i></span></span></blockquote>
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<span style="font-family: Georgia, Times New Roman, serif;">If you also add into the equation speech delays and disorders it is even more important to slow down communication and responses. Giving your child time in the therapist office or in your company to respond in any given situation will make a big difference. Let's not allow our hurried lives to also run into our relationships with our children, students and clients. The challenge is while you are interacting with your child, how do you do it? are you putting too much pressure on your child by attempting high load communication activities before they master the low load communication activities? Slow the process down and take the time your child needs and desires. I hope all the information I have provided in this post won't be too much but I feel these concepts adequately describe how to encourage communication with any child regardless of their diagnosis.</span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com1tag:blogger.com,1999:blog-3258388530422204617.post-49007085927332706462013-01-27T13:03:00.002+08:002013-01-27T13:03:59.578+08:00Communication Load Revisited<span style="font-family: Georgia, Times New Roman, serif;">A long time ago I discussed the concept of "Communication Load" and their activities devised by Maggie Johnson in her book. Please note all of this information on these slide power points are from Maggie and in they are not my own! </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">If you love this information like I did, there is so much more in her book the "Selective Mutism Resource Manual, this manual is for parents and therapists alike, it provides handouts of information you can give to others to education on Selective Mutism as well as treatment plans and general information and guidance. I refer to this book ALL the time and love her treatment model, by far it is the most practical and simple to implement for any person with the time needed. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">To read more on communication please check out my following post "removing barriers to engagement".</span></div>
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<br />Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0tag:blogger.com,1999:blog-3258388530422204617.post-76256428346020143322013-01-25T22:47:00.002+08:002013-01-25T22:47:56.894+08:00At the end of it all, I choose who I am!<div style="text-align: justify;">
<span style="font-family: Georgia, Times New Roman, serif;">Once again I'm sitting in a speech therapy appointment (for anyone who is a therapist, please don't take this sharing to heart) discussing ways of helping my son learn to speak better and the relationship of talking, questions and how as a parent we encourage our children to speak. To be honest I felt under pressure, as though every conversation I have to think of myself as a therapist constantly on the job and trying to think of ways to help my son learn new concepts and learn how to say things better. Mentally I am tired, the stress of being that type of Mum is hard work. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">What do I feel inadequate, not as a person but inadequate to make a difference, to do ENOUGH to help, is it going to make a difference, thinking I should have done more, done less, under pressure that it's not going to be enough and my kids will be the same developmentally. More than anything I feel like no-one actually gets it. The pressure is on the parent, not society, it's all on me, if I don't do it no-one will.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">It's not often I say what I feel about the situation. Selective Mutism is a curable condition with early intervention you can actually OVERCOME this condition, however without intervention this is impossible. Where is the funding? certainly not here for my son. This is what we get: 10 speech sessions a year (apparently this is decreasing now as he gets older) through child development, 5 medicare sessions a year, 10 sessions via mental health care plan a year. We are not eligible for any help from Disability Service Commission because apparently they don't help anyone with mental health issues as their primary diagnosis, the Mental Health are supposed to help them (apparently). </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">The reality what have I seen time and time again recommended in EVERY documentary, the therapy recommended is at least the following for the sliding in technique they use at a minimum 3 sessions a week of around 20 minutes for TWO months this is just the beginning. So naturally what we are currently getting is not enough, given that I am spending my time at home we live on the Carers Payment (thank God for small mercies) I really am struggling to find the money to bridge the gap. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">The issue with this whole story, the parent is where it is at. Because of the funding issues the rest of the therapy burden is put upon the parent. Often I see what I receive from say child development or such places it is more a consultative approach, they tell you what to do rather than actually do the therapy. Homework for the parent actually becomes the therapy. Now I am sure they don't realise how bad things have gotten. I remember taking a file to every therapy appointment I made a point to show each therapist the list of programs and activities I had been given, this was a full lever arch file as what was happening was we receive a little homework from the speech therapist, a little from the occupational therapist, then if you are lucky to have more than one child with special needs. It's all a little crazy don't ya think!! </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">You'll have to forgive me, today I'm a little over it! It's incredibly discouraging asking the experts what is wrong for no-one to actually be able to help. That the majority of the time I understand my son, more than anyone else, actually no-one really knows my son truly. Something, somewhere has to change. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVNCiwCIJqp8iK1UeCgWarMpM0rfagH9PA3a8LkbdTpMsQ9u6g-Tl8reifmdLOrpyWvrsUluG2Tk_ucapAtdXriywxFo2Y6otmlwPNCexe3cep_Q6nmkaPIVx4u0UDKVzOQglLKM4vaPx7/s1600/parent.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVNCiwCIJqp8iK1UeCgWarMpM0rfagH9PA3a8LkbdTpMsQ9u6g-Tl8reifmdLOrpyWvrsUluG2Tk_ucapAtdXriywxFo2Y6otmlwPNCexe3cep_Q6nmkaPIVx4u0UDKVzOQglLKM4vaPx7/s320/parent.jpg" width="213" /></a><span style="font-family: Georgia, Times New Roman, serif;">Now to finish on a positive note, I am sure a lot of you have actually been here with me, so you will get me. For those who haven't been here and you wonder why we are often a bit distracted or tired, now you know why!!!</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">This is what is really the most important no-one and I mean no-one will get your child like you do. It sounds strange but some days I take off the therapist hat off and muck around with my kids, let them climb all over me, stay up a little later than normal. Or I take my boy riding with me for some one on one time. Laughing over what my kids find funny (usually what adults think it stylish). I snuggle up with my baby and feel her cheek on mine, ask my 4.5 year old if I am allowed to kiss him tonight or enjoy the moments when my eldest son holds my hand while out shopping not just because I told him to. This is where it's at!</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">So the last few days, in my self searching I'm determined to do something a little different. Instead of being the "therapist" all the time I'm going to the therapist sometimes. In the whole scheme of things I guess I have put myself under the pressure to help my kids, the pressure from others is not necessarily what I have to be, I choose who I am and what I do. An idea I have had to make things simpler is to try and allocate times for therapy rather than allowing the WHOLE of our time together be therapy. This may be the challenge!!! </span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0tag:blogger.com,1999:blog-3258388530422204617.post-67080970854639495952013-01-15T22:57:00.001+08:002013-01-15T22:57:25.850+08:00something new - a diagnosis out of left field<span style="font-family: Georgia, Times New Roman, serif;">So long story short.. my second son who we have been waiting for an assessment to see where things are at, finally got to see the paediatrician So all the testing happens I know at what points he will find it hard and he does. Then she adds up the scores and development delay suddenly becomes a concern. Apparently he is around 15 months behind where he should be in 4 out of 6 of the areas of testing. We were well prepared for the speech aspect of his assessment knowing that he is not where he should be, but the rest was a bit of a shock. Then the next stage is to wait for a report from the paediatrician outlining how things are and what referrals she is making apparently occupational therapy is all that is recommended. I can't help but think is that all? There is a new label and really not a lot we can do about it yet. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Processing this news is quite difficult I never thought that things were really this bad, I knew that there was some effects from the hearing loss that he has experienced but this much I was not expecting. Feeling a little let down or something, why wasn't this picked up sooner. Why did it take so long for the stupid referral to turn into an appointment. What does it really mean I really don't know. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">These are the things I found while doing a quick search on old faithful google:</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://oursmjourney.blogspot.com.au/2013/01/recognising-developmental-delays-in.html" target="_blank">Recognising developmental delays by Web MD</a> I have cut and pasted the article onto my blog it was hard to read as it was split up over several pages. So you can read this all in one hit please note it wasn't something I have written.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.rch.org.au/uploadedFiles/Main/Content/cdr/Dev_Delay.pdf" target="_blank">Developmental Delay</a> a brochure on what it means</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">So today the testing was carried out and my boy completed the Griffith Mental Development scale. This is used a lot by psychologists and paediatricians and can give an idea of a child's development in regards to their expected development and where they really are some more information I found on the <a href="http://childpsychologist.com.au/service/assessments/the-griffith-mental-development-scales" target="_blank">Quirky Kid Psychological Services</a> page</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><strong style="-webkit-text-size-adjust: none; border: 0px; color: #1f1e1e; font-style: inherit; line-height: 18px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">"The Griffith Mental Development Scales </strong><span style="color: #1f1e1e;"><span style="-webkit-text-size-adjust: none; line-height: 18px;">(</span></span>GMDS<span style="color: #1f1e1e;"><span style="-webkit-text-size-adjust: none; line-height: 18px;">) are widely used by pediatricians and psychologists to measures the rate of development of infants and young children from birth to 8 years. The </span></span>GMDS<span style="color: #1f1e1e;"><span style="-webkit-text-size-adjust: none; line-height: 18px;"> assess a child’s strengths and weaknesses in all developmental areas, and can be used to determine if a child is in need of an early intervention or a treatment program.</span></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">The six areas of development measured by the scales include:</span></div>
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<li style="background-image: url(http://childpsychologist.com.au/wp-content/themes/Quirky/Quirky/images/nav-bg-2.jpg); background-position: 0px 0px; background-repeat: no-repeat no-repeat; border: 0px; color: #4f3930; display: block; font-style: inherit; line-height: 23px; margin: 6px 0px 0px; outline: 0px; padding: 0px 0px 0px 24px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;"><strong style="border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Locomotor.</strong> The Locomotor sub-scale assesses gross motor skills, including the ability to balance and to co-ordinate and control movements;</span></li>
<li style="background-image: url(http://childpsychologist.com.au/wp-content/themes/Quirky/Quirky/images/nav-bg-2.jpg); background-position: 0px 0px; background-repeat: no-repeat no-repeat; border: 0px; color: #4f3930; display: block; font-style: inherit; line-height: 23px; margin: 6px 0px 0px; outline: 0px; padding: 0px 0px 0px 24px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;"><strong style="border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Personal-Social. </strong>This sub-scale measures proficiency in the activities of daily living, level of independence and interaction with other children;</span></li>
<li style="background-image: url(http://childpsychologist.com.au/wp-content/themes/Quirky/Quirky/images/nav-bg-2.jpg); background-position: 0px 0px; background-repeat: no-repeat no-repeat; border: 0px; color: #4f3930; display: block; font-style: inherit; line-height: 23px; margin: 6px 0px 0px; outline: 0px; padding: 0px 0px 0px 24px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;"><strong style="border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Hearing and Language.</strong> Is the assessment of hearing, expressive language and receptive language;</span></li>
<li style="background-image: url(http://childpsychologist.com.au/wp-content/themes/Quirky/Quirky/images/nav-bg-2.jpg); background-position: 0px 0px; background-repeat: no-repeat no-repeat; border: 0px; color: #4f3930; display: block; font-style: inherit; line-height: 23px; margin: 6px 0px 0px; outline: 0px; padding: 0px 0px 0px 24px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;"><strong style="border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Eye and Hand Co-ordination.</strong> This sub-scale focuses on fine motor skills, manual dexterity and visual monitoring skills;</span></li>
<li style="background-image: url(http://childpsychologist.com.au/wp-content/themes/Quirky/Quirky/images/nav-bg-2.jpg); background-position: 0px 0px; background-repeat: no-repeat no-repeat; border: 0px; color: #4f3930; display: block; font-style: inherit; line-height: 23px; margin: 6px 0px 0px; outline: 0px; padding: 0px 0px 0px 24px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;"><strong style="border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Performance. </strong>Performance assesses the developing ability to reason through tasks including speed of working and precision;</span></li>
<li style="background-image: url(http://childpsychologist.com.au/wp-content/themes/Quirky/Quirky/images/nav-bg-2.jpg); background-position: 0px 0px; background-repeat: no-repeat no-repeat; border: 0px; color: #4f3930; display: block; font-style: inherit; line-height: 23px; margin: 6px 0px 0px; outline: 0px; padding: 0px 0px 0px 24px; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;"><strong style="border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Practical Reasoning. </strong>The Practical reasoning sub-scale measures the ability of a child (2 to 8 years) to solve practical problems, understanding of basic maths concepts and understanding of moral issues."</span></li>
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<span style="font-family: Georgia, Times New Roman, serif;">What now.. that waiting business again. In the meantime there isn't much I can do for now as nothing can be given or funded for until the report comes in. What do I feel? disappointed angry, frustrated, heart broken. You dream of providing your best for your children so they succeed in life you never imagine that they might struggle for the small things. Deep down a part of me knows that my son will be OK, my situation is not as bad as some others, but it's definitely bad enough for me. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">For now I am going to do my best to do the normal day in day out stuff and let time pass, I am going to allow myself not to think all of the time about what on earth to do to fix this, or to help him or to make it better. I am not going to spend every moment looking for information or second guessing the time it took to get him help, what else I could have done. So the program is look after myself, look after my marriage, then be the best parent I can be and somewhere in there fit in the housework! That is enough trouble for one day!</span></div>
Kerryhttp://www.blogger.com/profile/02122117234885034572noreply@blogger.com0