The Final Piece of the Puzzle!

Since my first born was a toddler I knew there was something different about him. His behaviour was always so challenging and he couldn’t handle his routine being changed. He would have melt down after melt down over the smallest of things and most days felt like I was living with a time bomb waiting to explode. For a long time I thought he was on the Autism Spectrum, but as he grew older his social skills never challenged him and he always fitted into wherever we went.

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He has always been the kind of child who could hold it together and be the best child imaginable at school or when visiting at other people’s places, but the minute he entered his safe environment which is his home or seeing us as his parents, he would lose his shit! As year after year has passed, we have spent so much time and effort into parenting our son by being strict, consistent, establishing rules and routines and I stress for a child like my son – consistent!

I never felt the need to seek help because his schooling was never affected and we were handling him fine. But then two years ago he developed a motor tic. After a visit to our GP, who wanted to investigate it as a ‘muscular’ problem, we spent 6 months taking him to a physiotherapist and chiropractor, but it was not getting any better and in that time he developed a vocal tic as well. It was at this point I knew it was time to seek advice from a paediatrician.

On our first visit, he was diagnosed with anxiety and OCD and we were told that in some cases a child’s anxiety can be so bad that it can cause a ‘nervous’ tic and it will go away within a few months. From there we went to a child psychologist to work on his anxiety and OCD issues, which was really good as we had a fantastic therapist, but I still felt like I wasn’t being heard! By this stage my son had presented with tics for 12 months and they weren’t getting any better only worse.

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Thankfully at one of our therapy appointments, just after we returned from our holiday to America, Bailey’s tics were so bad that our therapist finally thought what I’d been thinking for a while – his tics were more than anxiety related! She suggested that we needed to take Bay to a neurologist. The push for this was even more important when his tics were becoming more noticeable at school and starting to affect his school work. At this point our paediatrician was still convinced that the tics were anxiety related but agreed to refer Bay to a neurologist…this was back in February and last week was finally our appointment!

It was a loooong 8 months of waiting. As each month went by and even with therapy, Bay’s tics were going no where. They were constantly changing and the intensity of them was being heightened by fatigue, anxiety and excitement. When his tics first started I did a lot of research about tics and tic disorders and as time went by I was convinced that my son had Tourette Syndrome. Everything fitted with what he was doing and it was this article that I discovered, that had truly convinced me.

Then finally last week on Tuesday October 13th at midday, after being assessed by a neurologist and going over his history, the final piece to the puzzle of my boy who we’ve been trying to solve for many years was answered – Bailey has Tourette Syndrome. Although it deeply saddens me, I was more relieved that we walked away with an answer to his problems, I would have been more angry if we were told to come back for a reassessment in 6 months!

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We left the hospital that day feeling positive that we knew what we were dealing with now and after 2 years of going back and forth to specialist appointments, our son finally has some understanding of what is wrong with him. I went into robot mode for a few days and just did what I had to do. Contacted the school, had meetings with his teacher and deputy, organised therapy for the rest of this year and it wasn’t until I was running one morning that it really hit me. As I was pounding the pavement all that kept going through my mind was “shit, I can’t believe my son has Tourette’s!” But I kept telling myself he will be fine and we’ve got this!

Most days none of us think twice about it all and we just do, as we’ve been dealing with it for so long, but some days are harder than others. Just recently Bay has had moments himself where he’s struggling with it all and has asked if we can rip the tics out of him…these moments break my heart into a million pieces;( I never show him how much it pains me to see him like this, I just be there to hold and comfort him and tell him he is stronger than any child I know and that he will get through this.

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We have consciously made sure we have kept the communication very open with Bailey so he knows exactly what he is dealing with and we’ve also told Sienna everything so she has a better understand too. This has been the best thing and has really bought us even closer together as a family. I’m just so proud of how our children are handling this situation – so brave, so mature! This is something that we will live with possibly forever and it is up to us to provide Bay with whatever we have too, to make life easier while living with Tourette syndrome.

This diagnosis doesn’t change anything, he’s still our beautiful boy, he’s still a typical 9-year-old boy that annoys the crap out of his sisters and drives me to run a lot of kilometres each week, but I love him to death and wouldn’t have it any other way. He is and will always be bright and this was evident at his parent-teacher interview last week. Imagine being in class all day, trying not to tic and still having to pay attention and complete school work – I couldn’t imagine! And I’m so happy that he has his sport to release all that built up anxiety and energy. He is currently doing sprint training twice a week and is thriving!

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Where to from here…
We started therapy last week at the Kooky Kid Clinic which is where we will be going fortnightly for one on one appointments and monthly for Tourette Syndrome group sessions, with other children and parents who live our life. We have been taking Bay to a naturopath this past month and at this stage we are trying to do everything natural before we think it’s time for any medication….we’ll know when the time is right for this! Our aim is to have Bay leading his normal life and be happy in his own skin. Happiness and confidence goes such a long way and this is all we want for him.

This whole experience has shown me how strong we really are as a team. We only have our children’s best interest at heart and we weren’t going to give up until we got an answer. We really hate that our son has to live with this challenge everyday of his life, but we know that he will come out a stronger and better person with amazing empathy in the end. It’s not the end of the world as there is always people way worse off than you!

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Like always, we relish in the highs and hold on during the lows and when we see our boy struggling with his tics, we will make sure that we are there for him. As his mum, I promise to always be there to catch him when he’s falling – although he would squash me now as he is a giant lol!

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Anxious Annies…Finding a Balance to Cope as the Parent!

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I’ve been absent from the blogging world for the past month. A month that has zapped me of my energetic soul. A month where I feel I’ve been put through the wringer and I’m trying to dry out. A month that has seen us all sick and battling this exceptionally cold winter we are having. A month that has been very trying to say the least. Although the kids are still at the tail end of being sick, I’m feeling so much better than I was as I can feel my head is above water once again!

If you are a regular follower of my blog you would know that two out of three of my children (eldest and youngest) suffer anxiety and my son’s anxiety is accompanied with OCD and a motor and vocal tic. He’s been having therapy since the end of last year and up until a month ago he was in the best place he’s ever been.

His anxiety had almost vanished, his OCD was minimal and his tics were so mild you could hardly notice. Then term 3 hit and so did Bailey – like a tidal wave!! The past month has seen so much work that we’ve all done become undone and it’s left us feeling overwhelmed and vulnerable at the prospect of the future. Just when you feel like you’ve got a grip on things a curve ball is always thrown…

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Anxiety or any mental health issue for that matter, can be so debilitating and not only for the person suffering with it, but for the people who surround them on a daily basis. Going through the same speech pattern to reassure them everyday, picking up the pieces after a melt down, handing out consequences for inappropriate actions, waiting for the next situation to occur…it’s extremely hard work and intense.

I’ve changed my whole attitude towards it all as of late. Whenever my children’s anxiety are at a peak, I always find myself using it as a reflection of our parenting. But the reality is, there isn’t anything we’ve changed, it’s something in them that has been triggered by something that surrounds them and all I can do is put the measures in place to help them deal with the rough times and always enjoy the good times.

As the parent dealing with what feels like a cyclone, it’s important to find a balance in life in order to maintain your own mental health. Instead of constantly laying there at night wondering what the hell am I going to do next, I find ways to help bring out my inner calm and peace. If that means, online browsing (and few purchases lol) then I do. I make sure I regularly get my hair done and I’m even going to treat myself to getting my nails done every few weeks from now on! Exercise and running is my savour and having chats with my mum and sisters…well I don’t know what I’d do without them. My husband and I are lucky to have wonderful friends who we enjoy having time out with and of course if we get the chance to have a date night – we jump at it!

When I read this last paragraph back to myself, it made me feel vein and like I’m giving up! But it’s the complete opposite. Doing the things I love for myself gears me up to be the best parent I can be, to children who suffer anxiety and if having pretty nails while dealing with this is what I have to do – then I will lol! It’s not an easy gig by any means and having one child who doesn’t suffer anxiety (finally her separation anxiety has passed) I know how much easier parenting could be if my two other children didn’t carry a monkey around on their backs – so to speak.

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All of these things that I do to keep myself sane, allows me to get up each day and face whatever is thrown my way. This all needs to be balanced with fitting in one on one time with each child. I believe families who live the cycle we do, need to make a priority to each individual child. You not only have the child who suffers, but the child or children who don’t put up with a lot and give up things just to keep the peace. I find that having time alone with each child is a lovely way to get back on track if the pathway to happiness has had a bump in it!

Keeping positive amongst everything is a key to my daily mantra. I try my hardest everyday to maintain a positive attitude towards life. Don’t get me wrong, I have my people who I sound off to…we all need someone who we can release our inner thoughts too. I’ve had quite a few people lately message me and tell me how positive I always am. Such a lovely compliment. I would far rather celebrate the good that’s in my life rather than reliving the daily struggles we face at home. These moments are moments we learn from…the great moments are memories created and they are the things I want to share and shout to this world. Because although life throws curve balls, the goodness always out ways them!

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Our life for now will always be full of consistent routines, clear rules, boundaries and consequences, early bedtimes, debriefing sessions and conscious thought put into down time. We always plan new outings and go through new experiences with the kids well before it’s going to happen, to help eliminate any anxiety attacks. But our life is full of greatness. We don’t ever miss out. We may go through hell to get to the goodness, but we always get there. One day we’ll be able to take the short cut, but for now most of our journeys involve the long way round but we always get there in the end!

I wish everyday our anxious annies didn’t struggle. It breaks my heart when I see them faced with a situation that is overwhelming for them. But together my husband and I will never give up. We will always go above and beyond to help them be the best version of themselves!

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Courage shown…lessons learnt!

Friday was a long time coming. After hearing about cross-country for the past 4 years, Bailey was finally old enough to compete. At Runcorn Heights, the first time for a student to compete in cross-country is the year they turn 9. Bay has been waiting in anticipation for so long to take on this challenge. He couldn’t wait to start training for it. Due to my work commitments and Bay’s music commitments, he wasn’t able to get to school for the scheduled training sessions, so he trained with me.

We’ve had a ball training together. It’s been so awesome teaching him about something that is my passion. It’s also been a great time to bond and spend quality time together. I’m just so proud of how far he has come with his perseverance and determination. He really inspires me:)

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When we started training together 6 weeks ago, Bay was in quite a bad way. His anxiety was overwhelming and his motor and vocal tics were at their peak. Watching him struggle each day was breaking our hearts and we were doing everything we could to keep him calm and happy. At times cross-country training brought out the best and worst in him depending on his state of mind. But when he was focused he was amazing. To date his longest tun without stopping is 3k and his fastest km is 5.16 mins…am so chuffed for him:)

This past week leading up to cross-country has been a trying one. Anxiety started kicking in early in the week as he was worried that he wouldn’t know where to run. He was worried that he would get lost – which is his biggest fear in life! But once he was reassured by his PE teacher who walked the course with him, he started to settle. Then two mouth ulcers formed in his mouth and the morning of the cross-country he woke with a sore throat.

My whole speech to him all week was “mate it doesn’t matter where you place as long as you do your very best and have FUN!” That is my mantra for everything!!! He had his little heart set on age champion – dreams are free right?!? We all wished things like this didn’t we?!? Bay puts so much pressure on himself to be the best. It’s great to be passionate and have goals, but I worry that he misses the fun of it all!!

His race wasn’t until after morning tea at 11.30 – it was such a hot and humid day, really it was too hot for cross-country! He sat very quiet and patiently watching all the races before him. He was taking it ALL in. As he lined up on the line, the tallest 9-year-old by far, his face told the story! He wanted it soooo bad. The gun went off and all you saw was my son and his bright watermelon shoes shoot off like a canon. The first thing I thought was “not too fast Bay!!”

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He led for a fair bit of the race but the speed he started with was starting to punish him at the half way mark. Mum saw him with about 300m to go and he was hurting. As I stood at the finishing line waiting for the brightness of his shoes to catch my eye, three other boys came round the corner one by one. I was worried Bay was collapsed somewhere on the course but alas, he was still upright. As he ran the last 100m he had two boys right on his coattails, but he never gave up and pumped those legs to cross the line and receive 4th place…that’s when he did collapse….He was pale. He was delirious. He ended up vomiting. He ran that race with every bit of fighting fibre of his being and he did us bloody proud!

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Once he came back to earth and was back to being coherent, we debriefed the race. I told him how proud I was of him for never giving up. I know what running pain, stitches and heat exhaustion is like. It’s so easy just to stop and walk, it’s the hardest thing to keep going and push through that pain and he did! We spoke about the art of long distance running and how you have to pace yourself and not go out so hard and even though we trained to pace and sprint at the end, I think nerves may have gotten the better of him! Although he didn’t say it out loud, I could tell he was disappointed, but after lots of encouragement and praise from so many people, Bay went to bed that night feeling very proud of himself and super happy that Cunningham won the cross-country carnival!!!

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An added bonus was having his older cousin KB as vice captain:)

As his mother, and a running mother as well, this whole experience has left me inspired. If my son can push through that pain he did on Friday, I’ll always be able to as well. So when I set out to complete my 17k yesterday morning, there were times where I was hurting, but thinking of Bay helped me to push through and take over 2 mins off my 17k pb! Kids are inspiring…no mater what age or ability they have, they really are courageous little human beings!!

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Never Judge a Book by its Cover!

8 years ago when I gave birth to my beautiful ‘big’ baby boy and I became a mum for the very first time, I was calm, relaxed, the happiest I’d ever felt. I didn’t have a care in the world as my baby boy was such an amazing baby who fed and slept so peacefully…little did we know the ride we were in for!

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Meet our baby boy…his name is Bailey, he is 8 years old and on Tuesday he was formally diagnosed with anxiety! I know some of you that know Bailey would be thinking really?? I guess you can never judge a book by its cover!

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Anxiety…this word is tossed around so frequently now. It worries me that so many people in this world suffer mental health disorders and as someone who doesn’t, I’m sad for them as it stops them from enjoying some of the most precious things in life and leaves them feeling like they constantly have a monkey on their back!

Since the age of 18 months, Bailey has always been hard work. As a special education teacher, like my mother would say ‘you know too much’, I have always thought Bailey presented with a lot of ASD (autistic spectrum disorder) tendencies. He has always had major meltdowns when things don’t go his way, he doesn’t cope well with sudden change, he obsesses over particularly things, he can be highly emotional and sensitive, he worries over specific things, he’s sensitive to certain materials, he needs time to process information, but has never had any issues socially.

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By the time he reached school age I knew it was going to be the crossroads of knowing whether to take him to a paediatrician or not. I held off taking it any further as he has never struggled in any area at school. He has always fitted in well and been the best behaved child. He has the ability to keep it together when he has to and loses his s$&t when he gets home.

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I feel for parents who don’t have the necessary skills to cope with children who present with challenging behaviours. I am so grateful for my experience that I’ve gained from teaching, this has helped me immensely over the years. I remember having many days where I felt so alone and trapped in a bubble. Even though I knew what I was dealing with and how to deal with it, it’s so different when the shoe is on the other foot. Being a teacher to children with special needs is one thing, but being the mother is a whole new ball game!

Life with Bailey leaves us leading such a rollercoaster ride, there are so many ups and downs in our days. We always start each day fresh and we know the type of day it’s going to be right from the moment he wakes up. He can go days and be fantastic and then it only takes a late night, lack of sleep or a virus and he tires so quickly that he loses his ability to rationalise situations. He then becomes very oppositional and loses all inhibitions at his worst.

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Our recent hurdle we’ve hit, which is what lead us to taking things further and seeing a paediatrician, is Bailey has developed a nervous twitch or what is called a tic. He has both a motor and vocal tic which can be so severe at times it’s quite distressing to see. I knew straight away this had taken his anxiety to a new level and felt that it was time to get him the help that he needed. This all started in conjunction with getting lost at the Ekka’s baby animal petting zoo last August. Over time things have manifested and spiralled to this point.

When I walked through the paediatrician’s door on Tuesday I thought to myself…”8 years it’s taken, I was wondering how long it would take to get here!” I went in with my 4 pages of notes (not a teacher at all lol) and felt so at ease about everything as the doctor we saw was amazing. I highly recommend Dr Anita Cohn at the Mater Hospital. She was very informative and straight to the point. She spoke about treatments and what would be best for Bailey.

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Our plan for the near future is to get Bay the help he needs to deal with his anxiety. In terms of his tics, at this stage we are treating the underlying issue or the cause of them (anxiety) therefore Bay will start seeing a child psychologist in two weeks time. This will be an ongoing thing until we resolve some issues. We are back to our paediatrician in march for a review!

It’s been such a long road to get to this point in time. It’s been a huge learning curve for everyone who is involved in Bailey’s life on a daily basis. We are so lucky to be surrounded by such amazing, loving and influential people who no one has ever made Bay feel less about himself.

Admitting there is something wrong with your child isn’t easy and then taking the next step to get help can sometimes be just as hard. But I urge anyone of you who is reading this post, if you know that your little person may need help, do everyone a favour and ask. We are our children’s advocate and it’s up to us to make sure our babies, who we carried and nurtured into this world, are equipped with the skills to cope in this big bad world!

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My advice for anyone who is living the same life…enjoy the highs and hold on tight during the lows….remember with a low there always comes a high. Be consistent, follow through and always talk through a situation once your child has calmed down. Reassure them they are loved and ok. Encourage them to try new thing and provide challenges for them. Don’t stress, keep calm as they feed off whatever mood you’re in. Be there to pick up the pieces and give them that hug that they so desire once the anxiety goes from verbal diarrhea to a sobbing mess.

In saying all of this, we as parents are only human – we have moments where our tiredness gets the better of us, we may feel sick or hormonal! I’m the first to admit I’m not parent of year and make my fair share of mistakes. Everything is easier said then done, but it really does make a difference when we are on our game and so worth it for a positive outcome. Running has definitely helped me keep me on my game!

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It’s been very difficult to see Bailey hit the level of anxiety he has. But like anything that has been thrown our way, together my husband and I shed tears when he’s not looking, debrief with each other every day and work together as a team in order to help Bay become the best person he can be!

Anxiety aside, my son is amazing! He is funny, caring, lovable, smart and very empathetic. He gives the best cuddles and always comes and says good morning to me before he starts the day. He is never shy to cuddle me in front of his friends and always seeks me out to tell me anything exciting that has happened or things that are worrying him. He is so good at sport! This is what he lives for and it’s great to seem him thrive at what he loves. He is a gentle giant that everyone loves to love!

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We will get through this…this will not define my baby boy. This is a bump in his road that will make him stronger and more resilient. But for now I will keep being his mum to the best of my ability and be there to celebrate the awesome stuff and pick up the pieces when the train derails!

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20141113-135328.jpgWe are so proud to be Bailey’s parents and would do anything to help our boy – all we want is for our children to be happy!