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.