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. 

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"