A WORD FROM OUR EXECUTIVE DIRECTOR
Apologies for not having sent out any news for a while; the year hasn’t gone quite as I had planned, although, I imagine I’m not the only one in that boat.
The impact of COVID-19 on our community has been felt heavily and has varied greatly with how it has affected tic activity. For some, the slower pace of life during lockdown saw tics become more manageable while for others the anxiety of the unknown triggered increased bouts and severity of tics.
As for the Association, the past two months has seen the number of new families joining our community increase 10-fold, while enquiries on how to seek a Tourette’s diagnosis have also skyrocketed. In order to keep up with this increased need to belong and connect the Association has, like many, embraced the new world of virtual support groups, chat groups and workshops. With tools like Zoom, our aim is to connect with others throughout New Zealand when it is not possible to meet socially due to geographical distance or health concerns.
Together our community will pull through this and we will continue to tic loud and tic proud.
Kia kaha everyone,
Camp Twitch 2020
This year Camp Twitch is being held at the beautiful Forest Lakes Camping and Conference Centre in Otaki, an hour north of Wellington, from October 5th to 9th.
Interest in attending camp has been so great that registration has had to close early as there are no more beds available. We are expecting 130 people to join us in October – the largest camp we have hosted to date. We are still trying to cover costs of some activities for camp to make sure everyone has the best time possible. If you would like to donate to help out you can do so here:
From an early age TANZ member Eve Dyer had ‘habits’ or tics that made her different to her family. While living with tics did present some challenges, Eve never let them stop her from following her dream to study Law at the University of Canterbury. This is Eve’s story.
Occupation: Licensed Immigration Adviser
Where do you live & with whom? In Christchurch with my partner of 4 years and our two cats.
How old were you when you were diagnosed with TS? 21 or 22
How did having TS affect your life growing up – at school, at home and in public? Honestly, I got teased a lot by both my peers and family members. My own family shamed me constantly because my tics annoyed them and they thought that I could “just stop”. There was a lot of fighting about it. Test supervisors and other students would also sometimes express irritation with my sniffing tic during exams. However, I grew up in the 90’s when people didn’t really understand what TS was or how to recognise it – which is also why I wasn’t diagnosed until my third or fourth year of university. Things are definitely better for kids and parents of kids with TS nowadays, and despite my hardships, I still had many friends and was able to achieve many things growing up.
Did TS affect your ability to go to university and then when seeking employment? Not at all. I finished university with two degrees: a Bachelor of Laws and a Bachelor of Arts. I got the very first job that I applied for after my studies and completed a graduate diploma while working full-time. I’m still in the same job today and I absolutely love it.
Do you think TS affected any relationships in your life? No. My family loves me regardless and none of my boyfriends or partners have ever cared. My tics did cause a lot of tension with my family when I was younger, but we’ve still always been close.
Are there any positives to learning to live with TS? While living with TS certainly has its challenges, it has made me a stronger, more resilient and empathetic person, which are all good qualities to have when you work in the legal services industry. When you know what it’s like to struggle with something as difficult as TS, you tend to show more compassion and understanding towards other people.
Do you have any advice to share with young people and/or their parents on how to live their best life with TS?
- Never define yourself by your TS. No one else will, so you shouldn’t, either. Your tics are just something that you do; they’re not what make you who you are.
- Tics are unbelievably common – and it’s not just people diagnosed with TS who have them! I only just recently realised that some of my parents’ long-standing “habits” are actually nervous habits, i.e. tics. I’ve also seen some of my friends go through stages of having transient tics. Basically, we all have something that we do which is a bit unusual, but no one really minds or cares.
- Anxiety is 100% the reason why your tics are better some days and worse others. When I’m tired or stressed at work, I tic like crazy. The best thing that you can do for yourself is to try and reduce stress in your life and find things that help you relax.
Explaining cognitive behavioural therapy
The Tourette’s Association of NZ is pleased to announce that on Tuesday July 21st at 7:30pm, child and family psychologist Olya Kolyaduke from Young Minds Psychology will host a workshop for adults and parents to explain the theory of cognitive behavioural intervention therapy for tics and how the practice works. She will then answer questions from participants.
Registration is required to participate in this workshop so please email firstname.lastname@example.org for the link to register.
Did you know…
There is a programme called Tic Trainer available for use based on ERP (Exposure and Response Prevention), a standard treatment for tics. You may know how difficult it can be to access CBIT, so this might be worth a look. If anyone tries it, we would love to hear from members if it is something they would recommend. More information can be found here:
Virtual connections with Zoom
For the past few months TANZ members of all ages have been connecting with the use of the video conference tool Zoom. At least once a week a Zoom session is being hosted to either ‘Meet and Greet’ new families; or for age-specific chat groups to take place for our young people; and once a month there is at least one education workshop for adults with Tourette’s or parents of a child with Tourette’s to take part in. It is easy to participate – all you need is an email address and a device with a camera whether that be a phone, tablet or computer. The monthly timetable for the Zoom sessions is posted on the homepage of our website www.tourettes.org.nz and registered members of TANZ will also receive a monthly reminder email. To find out what is happening this month please follow this link https://tourettes.org.nz/keep-on-zooming
While the past few months have been challenging there have also been some wonderful highlights too.
In March the Catholic Women’s League of Aotearoa contacted TANZ to let us know that they had raised in excess of $12,000 with its At-Home Appeal for Camp Twitch 2020.
In April TANZ was also granted a further $20,000 from the Sutherland Self-Help Trust toward the cost of accommodation and meals for the 130 campers who will be attending Camp Twitch in October.
TANZ’s loyal and supportive regular donors have also stood by us during these trying times and for that, on behalf of all of our members, we are eternally grateful.
Last, but certainly not least, the board and the executive director of TANZ want to thank all of the individuals who give their time so willing to volunteer and help with organising social events and fundraisers; who attend our events and capture the precious memories, right through to those who volunteer their expertise and patience to help with administration and background work that goes into running the Association.
Nga mihi nui.