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?

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!

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. 

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. 

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 elshangowuzhere.blogspot.com.au"

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. 

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!