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.
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.
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!
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.
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!
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!
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!