When Buran was diagnosed with having TIC’S then began the journey of how we can eliminate the stress in his life in order to reduce the occurrence of the TIC’S. The Doctor did inform me that if the TIC’S lasted more than 12 months and he developed Vocal TICS as well then most likely the diagnosis would change to Tourette’s syndrome.
Whilst it is unknown exactly what causes TIC’S in children, they are bought on by stress and anxiety. In Buran’s case it is stress related to sensory issues and overload of information at school.
The sensory issues are believed to be stemming from his delayed vestibular system so he was prescribed a set of exercise to help with that.
As a young child Buran never liked swings, spinning or being at height. Whilst I thought that he just didn’t particularly like these types of activities it was due to a balance issue and his under developed vestibular system. This then led to his inability to process information and also retain new information, so in essence he was struggling to learn much at all in school. He had trouble reading as the letters and words would jump around the page and nothing really made any sense to him. And when he would learn something new his ability to retain and recall was very poor.
It all made sense! Finally some answers!
Buran has always been a big lover of sport. He played a season of AFL, T-ball and soccer and he loves being outside and physically active. He is totally in his element playing sport, it is his relaxed, happy space and the TIC’s were not so evident during these times. I began working with Buran and having him do exercises that were prescribed by an occupational therapist. They were exercises involving rolling on the ground, standing against a wall and rolling/turning his whole body along the wall and then back again. Sitting on an office chair and gently spinning him around in one direction for a few times and then the other direction. We spent more time at the parks and gently encouraging Buran to have a swing. At first it would be very small swings, until eventually progressing up to full swings and even twisting on the swing. Part of therapy was also getting Buran at height. So it started low and we just slowly progressed our way up. Eventually he loved the challenge and often I would climb with him so he felt safe.
Deep pressure massage was also prescribed to provide a calming effect and relieve the hypertension in his body. Pressure massage can assist in releasing brain chemicals, such as ‘dopamine’ which is a pleasure neurotransmitter and creates more relaxed, neutral state in the body. I would do this at night time to try and help Buran relax, so he would get a better night’s sleep.
Then I looked at his diet and tried to eliminate as many processed foods as I could and foods that contained preservatives. MSG in particular can cause behavioural changes in kids, mood swings and headaches. Flavour enhancer 621 (MSG) is a flavour preservative in many foods that kids love to eat. Once I started checking labels, enhancer 621 was found in majority of kids snack type foods. I found some great website’s that give detailed information on what the additives are, where they are found and what affect they have on our kids.
Whole kids is one website that you can head to for some great information https://www.wholekids.com.au/resources/food-additives
One of the other major things that I implemented was limiting his 'screen time'. Ipad, xbox and other screen type activies. I found that the more time Buran spent on these devices the worse his TIC's were. So reduction of screen time, particular on weekends. Unless you really monitor the time the amount of time your child spends on an electronic device is longer than you think.
Buran was very reluctant to do some of the exercises when we first started, however we persisted and over time we started to see gradual improvement in his TIC’s and his behaviour. His end of year report in 2017 indicated that he was still not at year Level for his reading, writing and maths but I was more concerned with getting him healthy. The thought of my son sitting in a classroom all day long and being confused with what he was doing and failing to comprehend any of it gave me greater concern.
I just wanted him to be confident and happy in going to school. I knew that if he was these things then we could work on the academic side of things. Forcing Buran to do extra reading or math wasn't the answer to his learning.
In 2018 Buran received some assistance with his reading at school, which was one morning a week before school. He really enjoyed this time. He was given one on one attention and it really helped his confidence and gain a love of reading and books.
By the end of semester one, 2018 Buran was up to Year Level for his reading. This result made me so happy and the changes I saw in him were overwhelming. Whilst the TIC’S hadn’t totally disappeared they were few and far between and he was so much happier.
He is comfortable in speaking about his TIC’s openly and he has developed some of his own coping mechanisms that help to calm him down. However he still has days where he is stressed and angry. But what is different and that he recognises it and we work together to try and give him some quiet space and calm his mind and body.
Like any parent I never imagined that my kids would ever have any issues and they would be happy, healthy kids. But it is what it is! It’s highly unlikely that it will disappear totally, so it’s a matter of monitoring it and working with him through the years. My greatest fear is one of social inadequacy that he might have as a teenager, being bullied and having difficulty in forming relationships. But, there is no use worrying about something that hasn’t happened and may not happen, so until that time we will just continue to love him as we’ve always done and be there to support him and guide him through the not so good days.
To be continued …..
This photo was taken in Adelaide at a park, Buran was super excited that he conquered this climbing apparatus. Seeing him be able to do this almost bought me to tears. I was so proud of him.
Me & my beautiful boy