something new...

Now it has taken me some months to write about this, I think I didn't know when to start. Part of which is I needed to take the time to digest the new normal for us. For a long time I had this box of symptoms that didn't fit the diagnosis that we had already discovered about my boy. In the beginning I had thought it was all related to the anxiety and the impact that Selective Mutism had on his early childhood and how it had impacted his social, emotional and every type of development. But I had always mentally logged away certain behaviours and symptoms until they reached the point where I couldn't put it down to anxiety any more. It felt like we had gotten the anxiety to a point where it was somewhat managed that it wasn't as life controlling as it used to be, and that is where we began. 

Amongst the complexity, we hadn't even considered it until after discussions with our son's teacher made us think about it. You see at our old school we were kind of given the impression that there was nothing actually wrong everything we were experiencing was completely normal and we were trying to get our children help for which there was nothing wrong. A lot of the time it ended up that we were given the impression that indeed it was a problem with us the parents and we just needed to get more organised and there was really no problem at school we were the problem. Hence we weren't able to see the forest for the trees and got nowhere. 

Now in a new environment, it was easier to see things a lot more clearly. Firstly my boy was so much more relaxed and the symptoms that I had put down to anxiety didn't seem to fit the bill anymore and so we began. We spoke to our trusty psychologist about that we thought our boy had ADHD, after some intense testing, in itself was quite revealing. I needed to sit back and let my boy fidget, let him move not talk to him so that you can see what he was like for the purpose of the assessment. That was pretty hard, but it did make me think about how many times I needed to say something. However at the end of that session it was pretty clear that we had finally figured it out. After which we needed a questionaire from the teacher and then it was all collated. Then it was full steam ahead, we had the reports sent to our paed and the recommendation was that medication would be of benefit. 

Luckily we had an appointment booked for the following Monday, and it all fell into place. We actually didn't think anyone would actually agree with us, and then they actually did. To be honest it was a relief I knew who my son was, I knew his character, his personality and it didn't add up to what we were told eg. it was our parenting that was the problem. But then it meant it actually was something that was forever, till now we knew Anxiety could be something that he could eventually master to some degree, but this type of diagnosis was forever. It felt like our journey was only just beginning.  

what happens when the anxiety continues

It's been an extremely busy few months since I posted a little idea about what I was considering on posting next. As you know my son in his journey in overcoming has started medication and this has been an amazing help for him. Maybe I was naive or maybe just stuck in our situation I had always thought that when we finally got him to the point that he could speak then our struggles would be over. Much to my surprise he still struggles with anxiety, many would say he is suddenly cured. Nope he is not even though our local Community Mental Health group would say he is. It turns out it's not over yet, which was painfully evident when our son first suffered his first panic attack. 

So... we aren't at the finish line yet. I read this great article written by the Child Mind Institute on the subject of anxiety, "How Anxiety leads to disruptive behaviour".  They make some really good points a few that made me think. 

if your child needs to be spoken to by the teacher, we didn't realise how much of an issue this was until recently. He started speaking to us about the times he used to get told off for things that were related to his diagnosis such as shoelaces, going to the toilet that type of thing. We had changed schools and all these experiences come up. I had to chat with my son about how not everytime a teacher talks to you they are not telling you off and it is ok to ask are you telling me off. This was mentioned in article too that the boy who they were working with "He can't tolerate any—even constructive—criticism. He just will shut down altogether. This was an aha moment for me, that he struggled with even that as well. 

Anxiety manifests in a surprising variety of ways in part because it is based on a physiological response to a threat in the environment, a response that maximizes the body's ability to either face danger or escape danger. So while some children exhibit anxiety by shrinking from situations or objects that trigger fears, some react with overwhelming need to break out of an uncomfortable situation. That behavior, which can be unmanageable, is often misread as anger or opposition.

"Anxiety is one of those diagnoses that is a great masquerader," explains Dr. Laura Prager, director of the Child Psychiatry Emergency Service at Massachusetts General Hospital. "It can look like a lot of things. Particularly with kids who may not have words to express their feelings, or because no one is listening to them, they might manifest their anxiety with behavioral dysregulation.

anxiety presents either as an internalised response or can show external symptoms. The tricky part is unless a person is skilled at picking the symptoms it is easy for anyone including parents to miss the signs that their child or a student of theirs is struggling with anxiety. Then you also have the added bonus of each child will also present differently. When our son was younger we always knew he was anxious if he started acting out, behaving badly being upset or whatever was presenting at the time. It always confused us. But I know that he was very internal about his feeling but it showed in his behaviour.

continued from my March thoughts....
it's not over yet is a fearful thought for any parent who has had a child with Selective Mutism, it can still raise it's ugly head. A few months after I started writing this article I have come back to finish it. Still thinking on the topic of anxiety and how it is affecting my son in the here and now. I am happy to report that a new school has made the world of a difference for him, being in the right environment is one quick way to reduce anxious type behaviour and it seems it is not as in the foreground screaming at us as it did before. And this year he has only been on the verge of a panic attack just the once. So it seems our actions and also the right dose of medication is really helping right now. We are hoping in the near future we can reduce his dose and see how this goes

so what if your child is struggling right now? This is what I would say regardless of the origin of the anxiety as a parent you can be a safe place for them. Firstly NEVER ever downplay the issue it may seem quite small and silly at the time but it is important to validate them but then also teach them how to cope. A simple easy strategy that anyone can help your child with is breathing, slow deep breathing can really make a difference in an anxious situation. Another strategy starts with the safe place of your home,give your child the chance to have some quiet time if they are particularly anxious, turn off all the noise and let them have some quiet time. Books are fantastic in helping a younger or an older child understand their feelings. We used this a lot with our eldest and we still bring them out from time to time with our other children. There are lots of things we can do with our children to teach them how to manage anxiety (as stress and anxiety is a normal part of life) and overcome the feeling of being overwhelmed by those horrible feelings. And it is so healthy to start young so that they can be healthy well adjusted adults in the future.

It's been a few months since I started writing this post and I have been thinking a lot about this issue. In reality it was unrealistic to expect a miraculous recovery and for anxiety to simply disappear. But what we have learned is that sometimes our children's mental health can become a life controlling issue. It is not something we would ever want for our children. That is why we chose to use medication undo the damage that anxiety had done on him for most of his life and lucky for us this was successful and we are on the other side now of a tough decision knowing that it was right. 

So if your child is struggling with any mental health issue, do take the jump to get them treatment, use the psychologists, GP's, pediatricians and other professionals to equip and support you to help your child to get their mental health issues within an acceptable limit. Some children unfortunately will struggle for quite a long time and this is real, and others may go on to battle this for the rest of their life. It doesn't make you a bad parent nor does it make your child a bad child either. 

What to do if the anxiety continues

My thoughts on the relationship between Selective Mutism and Anxiety and what to do if you discover that the anxiety still exists once your child is able to speak. 

those moments when you....

- really give it to the waitress who tries to tell you that you have to pay $2.00 extra because you didn't book (who we phoned earlier)

 - when the internet goes down for the 70,000th time you give the internet company a bit of a mouthful (not swearing btw)
 - your poor husband is on the receiving end of being told off just a few too many times in one day and then you have to ask them to pick up the kids
 - some makes an innocent comment on your facebook timeline that shouldn't annoy you and you want to rip their head off 

- you just keep forgetting words as you are trying to talk

Maybe just maybe I am not looking after myself as I should. This journey that I am on it seems like it is a long longer than I thought. To be honest it got a lot more complicated when I thought it should be getting simpler right about now.  I can't change the situation the diagnosis, the issues that keep coming up. I can only change myself,  I thought I should list a few things I have noticed that I need to change or are a result of the situation I find myself in:

• putting on weight this is the most difficult to discuss.. after working my butt off (literally) for the most part of 16 months doing something just for me, feeling great about myself and being much healthier. I was doing some clothes shopping the other day and realised I didn't like what I saw. Before when I had lost weight I was admiring the change and the hard work that I had put in to do that. Is it the kids fault maybe not, but having to move houses and then having my plate portions doubled in more ways than one, one being what I have to manage and the kids health issues and two what I am eating. My biggest confession? maybe eating a block of chocolate in one night is not too great for my waistline! goal: so my first goal is to actually get back into my gym routine, walk more ( if it's not raining) but actually TURN UP! For my birthday pressie my husband bought me a fit bit one I had one for ages and then because I was too tired I washed it this will help me keep active!  Watch my excuses is the biggest thing! 

• not doing what helps so I got to a point where I was like I can't change my situation but there are some stuff that I can do to help. Three things that come to my mind quick smart? are one I used to love going to the gym and working out more than a few times a week. Confession I struggle to do it more than once at the moment. Eating well is number two yeah I think I am failing in that area too, good thing you can't see my red face from here. You get the point and yep it seems to relate to point one too. My third thing is simple yet not I need more sleep plain and simple I am exhausted just exhausted and now sick so yep need to work on this big time. Goal: Sleep more yep still going to work on it, I have even blogged on this before. But right now this is where I struggle the most. So how do I do this? turn the TV off earlier, go to bed before 10:30, and monitor my sleep with my fitbit one and try and get better results. The proof will be in the numbers. 

• getting a bit boring the whole danger of being a Mum and a special needs Mum is that we can get a bit boring. If it is not talking about our kids their achievements and their lack of or their behaviour. It can also be the appointments you are attending all the time and how busy we are. Yep I know I am guilty of this, I think what has also happened it means I disconnect a little from those who seem to have a dare I say it stock standard family situation. No special needs issues, normal discipline issues, shopping, cleaning and that is it not really I know but it feels that way. You don't want to talk about your life because you fear they may not get it or that they may say something that really hurts or you have to spend the next week getting over. So you become a bit boring and just talk about the weather coz that's safe :) Goal: this is something I am just starting, I enrolled in TAFE to do bookkeeping one way to not be boring is to give yourself something to do. Yes I know the time commitment could be an issue but I think it will help me think and talk about other things if I do something else as well.

• might have become a bit emotional yeah the not so great truth. It's kinda natural for it to be like that but...  if I want to be the best Mum/wife or whatever else my roles dictate I NEED to look after myself enough said. Goal: get out a bit more doing something just for me is totally going to help, I head out to a bible study group in my church once a fortnight, but I really need to get time out more regularly and I think date nights etc.. have taken a back seat. I am going to work on doing something more, whatever that is family orientated, couple orientated and just me. So for instance when I finish writing this blog I am going to play a computer game just because. 

Self awareness is a powerful tool,  I have not quite got it worked out yet, I have realised the above things are happening but man it is a lot easier said than done to work on them. Starting to do something and stopping is really frustrating but I must just start and stop condemning myself if I don't succeed all the time. 

If you are interested in reading a few articles about self care and being a special needs mum you could check out these articles is self care possible as a special needs parent and tips for taking care of yourself when your child has special needs.

courageous parenting...

Now to begin this post I must mention a few things, now as you might have noticed (I hope you have) it's been quite some time since I have posted, life has been very very full! My second confession is that sometimes I find my blog helpful in processing and recording information that I am researching and studying and it helps me to process it as well and it makes it easy for me to find links in the future. 

As a parent of two kids with special needs from time to time you attend a workshop that may address some of the issues that arise. Today was helpful because it was addressing the behavioural challenges that a parent may face. It was helpful for me because I had a few aha moments that completely made sense to me. There are a few points and subjects that made an impression on me. Most of which comes from research that someone else has undertaken

* The Cycle of Tantrum, Rage and Meltdown was developed by Myles and Southwick, they propose there are three stages that each child or adult goes through when they have a tantrum, rage or a meltdown. In Summary they are:

Rumbling just like a volcano sometimes there are signs that a meltdown can be on it's way. Be it sensory or from another cause a parent can prevent behaviours from getting worse by a variety of techniques (more details can be found by clicking on the link in the title) these are: "antiseptic bouncing, proximity control, signal interference, support from routine, just walk and don't talk, redirecting, and home base." Something that can be frustrating using techniques is not a recipe for success rather intuition and a parents understanding of their child can lead to a more positive outcome. Even more frustrating is at sometimes there is an escalation without a clear trigger or a sign of the rumbling process. I think trial and error and experience is the greatest ally. 

  

Rage when were first experience the meltdown experience at first you attempt to discipline, bribe and reason with your child to get them to stop having a meltdown. I have vivid memories of carrying a kicking screaming child to the car whilst in a shopping centre. Even now we still don't fully know the why all we learnt very quickly was that there aint nothing you can do once they have hit this stage but wait. Of course it is important to make the situation is as safe and private as possible. Sometimes after an incident there is a level of shame and having the least amount of witnesses is best. 

Recovery as a parent is so crucial and it is so important to manage this stage well. Sometimes the child may not remember the meltdown or have no understanding of what happened or even that their behaviour was wrong. On a level aside from this theory I think that once it has been discussed or managed sometimes it is appropriate to discuss natural consequences, however there are a few must do's. Firstly it is important to judge your child they can be very vulnerable and it may not be a great idea to drum into them how much what they did was not appropriate if it shames the child and can cause damage to their self worth. Secondly and most challenging once the situation has been handled as parents we can not afford to be historical. We must move on and if we are struggling with this we need to do whatever is necessary so that we can move forward in our relationship with our child. 

* Compass of shame the behaviour can be challenging this concept however was the most thought provoking. When you have a child with special needs you attend a lot of therapy appointments and it is common that you are always trying to teach something, address something and life seems to revolve around not quite being enough. I think the most challenging is the thought that in getting help you can affect their self esteem moreso as they get older. So this whole idea of behaviour that shows that your child or adult is feeling shame is really challenging. The four reactions are the following avoid, attack others, self attack and withdrawal. I had some thoughts about the behaviour of my children and how their situation affects how they feel and how feeling different from others makes them feel. It definitely made me consider how to ensure my kids feel empowered by seeking help rather than feeling that we as parents are always critical of them. It also revealed to me some of the puzzling behaviour that my sons at school when he avoids using technology or equipment that will make his schooling easier. This concept of the compass of shame can reveal a pattern of behaviour that can be a sign of the underlying issue. I have seen some people when they feel inadequate or challenged they respond by attacking and undermining others. 

* Building Self Esteem and Confidence as parents one of the most important tasks to lead to independence is this. If a child has not got a good self esteem they won't try new things, take a risk or be able to easily brush of the words of someone else who has hurt them. When you have a child with special needs the challenge is even greater. I have noticed in the process of helping them improve their speech or receive OT their can be a focus on the negatives. To get funding you need to be extremely negative and it is then easy to lose sight of what they are good at and how well they are actually doing. I try my hardest but I know the pitfalls and I fall in headfirst some days. So.. to build self esteem one needs to set their children some tasks, goals and skills to achieve. This may be extremely simple, but it can be easy to do things for them sometimes it is to avoid a meltdown or to save them, it doesn't build them up in some situations it actually tears them down. So my personal challenge is to work out what the kids need to do and what they don't need to do yet, remove the pressure from others family, school and their expectations and focus on what my child needs and where he is at realistically.  

For more information on this subject please read this pdf on Self Esteem produced by the Carson St School and Dolly Bhargava

For now this is enough for me to digest and think on, my next post I will post some more anxiety related information and more on our current journey as well. But yes today I got some more ideas on where I can go which to be honest it's been a while and I find even to have something to think on is encouraging as a parent.

grief the hidden journey

Recently life dealt it's hardest few weeks or months, it all culminated and I felt punctuated by two appointments with specialists and surgery. To be honest at the time I was physically and mentally exhausted, after two full on days then we were hit with news, information that seemed to rock me big time. What eventually made me cry and properly was an ill timed moment with a cafe worker at a hospital. One of the only moments I actually had been able to speak back to someone who had treated me wrongly but promptly burst in tears once I got back onto the ward.

One part of having children or a child with any different needs, or special needs is the hidden journey that we all walk, called grief. It's invisable and creeps up on you usually disguised at jealousy over someone discussing their child's success, or feeling cut up because a family member mentioned something that hurt, or realising in a tangable moment that your child has to do it tough. 

Stages of grief when anyone discovers they are in the midst of grief the 5 stages of grief can be the first point of reference in understanding the process and I think honestly people want to know when is it going to end. As a parent and in most cases grief is not accompanied by death, grief can come in waves and be a continual process. The stages are as follows, denial, anger, depression, bargaining and acceptance. 

Honestly at first I didn't recognise what was going on, it's been coming for a while and I didn't see it. But for about a week I couldn't stop crying anytime I had any moments for myself I would burst into tears. I felt vulnerable, raw and like I couldn't even answer the phone. Like I didn't even feel understood. Brokenhearted was how I felt, like I could just keep crying and crying and I felt so depleted. Was it tough, yep, but I knew it was important to get it out of me just for a little while. It was a little ugly yeah I'm a Mum who's trying to lose weight that went out of the window for a week or so or maybe more. It looked like a cake of some description each day, even a chocolate too, I think one night I may or may not have consumed a block of cadbury's popping candy jellybean chocolate. 

It was back to first aid, it's a phrase I think of sometimes when it gets down to basics. I start with good sleep, good eating, and exercise and a little me time. What also helps me is my faith, straight after I realised how I was feeling I made a beeline for church the very next service they had. What helps me is the music, often intimate and open, often when I put up walls (you know what I mean) in those moments they come crashing down. I find when it gets tough I run to God and pour it all out to him (Read Psalm 62:8) lay it all out, cry it out even scream it out when appropriate. It's my go to when I don't know what to do. When I am at home, I just listening to some quiet music and just had a bit of space, a great place is also the shower who knows why it is nice to cry in the shower too. Next I take time to spend alone with my husband, chances are we are going through this stuff together, so a few date nights were in order and totally helped us get some refuge in the craziness. In the midst of tending to our boys one of which was in quite a bit of pain from the operation that he had. 

So what did I learn through all of this, sometimes being a parent is really hard work, secondly sometimes it doesn't hurt to say no when were not coping, I need to listen to myself more and lastly I really need to organise respite better for 2014. The bad news that I did have, I really won't know what will happen until a few months away, so for now I need to chill out and not worry about the what if's in the meantime. Besides I have got enough to do anyway!

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.