Sunday, July 6, 2014

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.


Saturday, May 24, 2014

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.

Saturday, January 25, 2014

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!

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.