Wednesday, October 30, 2013

understanding and communication

 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. 

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. 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. 

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. 

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. 

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.   

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. 

Thursday, October 24, 2013

How clean is your house?

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.

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. 

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.

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?

Saturday, October 12, 2013

let's talk about the "r" word

So let's talk about something that almost seems like a swear word it's so hard to work out.
"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 :)

Scared 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 scared 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 Selective Mutism 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. 

Exhausted 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 exhausted 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!

Forgetful is it a feeling I don't really know! But that's how it is with me at the moment. I forget lots of stuff at the moment. Unfortunately I'm forgetting appointments getting times mixed up and then they get it mixed up to make it worse. At one point I was sitting in hospital with my boy and get a message from our psychologist I had flat out forgotten to cancel our appointment I did not feel great at all. It wasn't an issue for the psychologist but it shows where I am at the moment. 

Starved 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 "alone" plain and simple. It was important for us to have time together and it felt good to be just us!

Reclusive that's how I felt and still do for a large part. It feels like there has been SOOO much going on. I just want to go home and be with my family spend time with them. I almost wanted to ignore everyone else, not answer the phone. I got sick of phone calls it has nothing to do with the person on the other end. But it seemed like I was always answering the phone making phone calls and I was over it! Home even though to be honest it's a mess, but home felt like a haven. In my home it was my rules, my plans and so on, I had the last say. 

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!

Wednesday, July 31, 2013

goals goals goals...

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. 

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. 

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. 

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. 

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. 

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. 

Wednesday, July 24, 2013

Every journey has a fork in the road

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. 

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 here.

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.

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. 

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. 

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. 

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. 

Saturday, July 20, 2013

we can all be superheroes too!

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?

Superhero power #1: know thyself 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!
Superhero power #2 be content with what you have 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. 

Superhero power #3 we all need time out 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. 

Superhero power #4 get organised 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. 

Superhero power #4 all super heroes have a hideout 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. 

Superhero power #5 find out where the other super heroes hang out The value of community is priceless. Finding people who are understanding, where there is no judgement and friendship is so amazing. I know that I would not be where I would be without the valuable input of those around me, online or face to face these people are are all in my eyes superheroes, they are inspiring, encouraging and help me continue on in this journey. 

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!

"The graphics in this blog article come from this blog, they are fantastic check them out"

Wednesday, July 17, 2013

sticking up for what is right, a short how to guide in not loosing your mind!

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. 

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

know yourself - 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. 

build relationships with those who are working with your child 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. 

look after yourself - 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). 

know the system 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.

get the pieces of paper 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. 

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. 

Monday, March 25, 2013

NDIS: is the fairytale real, an explanation of the NDIS from a parent's perspective

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.

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. 

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):

  1. The person contacts the NDIS for assistance and can conduct their eligibility assessment. This can be done either via phone or through the citizen portal online from April 2013
  2. If not eligible , they can still access tier 2 supports (please see N.B at the end of this process) 
  3. 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. 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. 
  4. Once assessed, the person chooses the supports needed to meet their goals and discusses how they will manage their plan.
  5. The person then manages and implements their plan, monitors outcomes and asks for a review if anything changes. 
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 general information about the most effective care and support options within generic and community support groups and services. 

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.  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. 

Please click on the above graphic for the original article this graphic was taken from

The statistical side 
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. 

"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." National Bureau of Statistics

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 the government will go over budget or that the criteria is likely to be too tight 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. 

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 ABS 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 Autism/ASD Diagnosis rates in Australia by Bob Buckley Evidence suggests that with the advances in diagnosis that this figure could be on the rise and continue to multiply. 

In conclusion 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!

Saturday, March 23, 2013

Our Journey of Selective Mutism has joined twitter!

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:

- Follow up post on the NDIS
- What really goes on in our heads when we discover that our child has special needs

Tuesday, March 19, 2013

the origins of the ultimate fairytale

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:

  • 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.
  • 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.
  • 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).
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.

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. 

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. 

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. 

Wednesday, March 13, 2013

another way of treating Selective Mutism. Beware it's contraversial!

Now in the past I discussed the decision I have made in regards to medication in "to medicate or not to medicate" 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:

- Is the intervention program in place
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. 

- An assessment of where your child is at
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.

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 "What is Selective Mutism". If we identify the symptoms then we can see when they disappear and watch the transformation of the child. 

- Is your child willing
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.

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.

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 here (I have included it below this post). It is wise to take your research further, what I found interesting was the majority of studies in Selective Mutism and medication they refer to fluoxetine also known as Lovan. Some studies that have been carried out on the effectiveness of fluoxetine and Selective Mutism are:

Selective Mutism: A Review of Etiology, Comorbidities, and Treatment 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.

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."

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).

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. 


"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. 

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. 

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?
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
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. 

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. 

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. 

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. 

What drugs other than fluoxetine have been used successfully with young (pre-school) Selective Mutism kids?
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. 

Are there any studies available (or even in progress) that discuss the long-term effects of fluoxetine?
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.

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? 

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. 

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

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. "

Wednesday, March 6, 2013

I will

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.

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

I will fight for you to have the best opportunities in life
I will try to understand you, to know you and to communicate well with you
I will show my love for you in many ways
I will tell you as often as I can how proud I am of you
I will recognise your strengths and weaknesses and champion you on towards your goals
I will celebrate with you and I will cry with you
I will let you have a go, push you, empower you and sometimes makes things a little tough so you can grow
I will do everything I can so that others can see the potential that I see in you, it's immeasurable. 

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. 

Short but sweet, I have been overwhelmed by this song and how it made me feel encouraged NEVER to give up.  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.

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! 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. 

Tuesday, February 26, 2013

What not to say

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!

1. God doesn't give you more than what you can handle.

Now I completely understand where this saying comes from, there is a verse in the bible that  talks about 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.

Now while I am at it, I'm also going to attack the 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. 

2. The minimisers

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:

- he looks fine to me
- he'll grow out of it right
- lots of kids do that
- he doesn't look autistic 

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. 

3. The parenting police

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. 

- cut the apron strings
- all he needs is some discipline
- back in MY day...
- all he needs is a good spanking

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. 

4. Joe Blow has this and the solution focused advice

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. 

What can you do?

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:

- 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.
- Offer to babysit or take our children out (we know it's big)
- 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
- Have us over for dinner every now and again (or for some kids bring dinner over)
- 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.
- 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. 

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.