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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