Tourette’s Association NZ (TANZ) 'CAMP TWITCH'
The team at CH’I Drinks Workshop are lucky enough to be involved with communities across New Zealand, sending out sponsorship in the form of CH’I refreshments to grassroots communities putting on events, fundraisers, workshops, quiz nights… even camps! Through this, we’ve discovered some true community heroes who we thought we could all learn a lot from.
We recently had a 45 minute phone interview with Robyn Twemlow, Founder & Executive Director of Tourette’s Association of New Zealand (TANZ)
What is Tourette Syndrome?
Tourette Syndrome (TS) is a neurological disorder characterised by repetitive, involuntary movements and vocalisations called ‘tics’.
Six in one thousand people are born with Tourette Syndrome. Not everyone will be diagnosed as their tics may be so mild that they never impact upon the person’s everyday life.
What are the symptoms of Tourette Syndrome?
Early symptoms of TS are typically noticed first in childhood with the average onset being between the ages of 3 and 9 years. Boys are 3-4 times more likely to develop TS than girls. Although this can be a chronic condition, with symptoms lasting a lifetime, most people with the condition experience their tics most frequently and severely in their early teens.
This is where Camp Twitch comes in.
Talking with Robyn, you cannot help but feel inspired, educated, in awe and, at times, teary-eyed. Robyn started TANZ in July 2013 when her daughter Analise was diagnosed with TS at age nine. It had been a six-year struggle to get a diagnosis and when Robyn discovered there was no support available for Analise, or herself, she felt lost and alone.
Robyn reached out on Facebook to find other people in her situation and immediately received messages from people saying exactly the same things; that they had no support, they didn’t know anyone else in NZ with TS, that they’d had a long, hard journey and that they would all love to meet each other!
Introducing CAMP TWITCH
Robyn came up with the idea of a camp. People from all over New Zealand could meet in one place. The kids could meet others with TS and their parents and siblings could also attend so this new support system could help the entire family of those in attendance.
Robyn booked a lodge for 30 people. They ended up having 97. To cover the costs of camp she formed the Tourette’s Association of New Zealand to fundraising. Because TANZ wasn’t even a year old, they couldn’t apply for funding. It took a year of shaking buckets and sausage sizzles to raise enough for the first official Camp Twitch.
Then it happened and the result was incredible. The kids and parents got so much out of the camp.
Kids on Camp Twitch
Most of the kids who came to camp had struggled to form friendships and were often bullied at school. At Camp Twitch they made real friends, people who didn’t care if you shouted out or punched a wall. Robyn states that “Basically? If you aren’t tic-ing then you are the one that is different. At Camp Twitch, you’re not normal if you don’t tic!”
“When the kids arrived at camp on the Monday morning they barely made eye contact with anyone. By Thursday night they were up on stage showing off, telling jokes or singing a song.
Lifelong friendships were formed. Almost every kid that attended that first camp has attended another one since and some have attended all five camps. Their friendships are such that they stay in contact with one another throughout the year despite them living in all different parts of New Zealand”.
Parents at Camp Twitch
At camp parents finally found people that understood their journey. They discovered the shared experience of always being told that their child’s behaviour was their fault; that they ‘didn’t parent their child well enough’; or had been labelled ‘bad parents’. Robyn, for example, had been sent on five parenting courses over the years before her daughter’s diagnosis.
“The parents all said that they had felt a lot of guilt, especially when their child was tic-ing relentlessly and hurting and there was nothing they could do to stop it. Because TS is a neurological disorder, and the body needs to release the urge to tic, touching them or holding them only makes it worse,” Robyn explained.
You are left watching your child in this physical pain and there is nothing you can do. Because TS is genetic, you can’t help but think “oh my god, is it my fault?”
Coming to camp and seeing their kids being accepted and playing with other kids for the first time was life-changing for the parents. Not only were their kids “just being kids” but they were gaining confidence and independence too.
Living with TS can be very isolating as often the child is the only one at their school or in their community with TS. They don’t get invited to sleepovers or have play dates. You are their support, their friend and their parent. As much as you love them, they are with you 24/7.
Often those with TS also suffer from other comorbid disorders such as ADHD, Autism, OCD (https://tourettes.org.nz/about-comorbidities/)… and this extra pressure in life can result in marriage break-ups and solo-parenting, also increasing financial pressure.
Siblings often struggle to deal with living with a brother or sister with TS. They never know when a tic might happen and sometimes they are in the wrong place at the wrong time when their sibling shouts out or has an uncontrollable motor tic. At camp they found new friend-groups too and this gives the parents time to talk, to attend workshops, to laugh, (Tourette’s can be really funny) and have their own space. Over the years grandparents started to attend too.
Needless to say, this story is one of true success.
Having Tourette Syndrome in NZ
America has 200,000+ reported cases of TS. New Zealand’s cases are in the hundreds. There are no specialists in areas with less population such as NZ or Australia. So it’s very difficult to get a diagnosis.
Tourette Syndrome is not recognised as a disability in New Zealand, so there is no respite care or allowance for parents of these kids to have a break. Parents with special needs children quite commonly separate due to the stress, so you’ve got a lot of single parents, usually with two or more kids trying to fund themselves into Camp Twitch. They simply can’t afford to do it.
In comparison, Autism is recognised by the government in NZ. They have funding, respite care, counsel and camps too. All are free.
Robyn went to Parliament to meet with the Minister and Associate Minister of Health, to make a bid for a change in policy. Basically, there is no chance.
The education and medical institutes are the hardest to crack when it comes to TS awareness. Teachers don’t learn about it in their training and medical students don’t either, unless they chose too.
Good news: Robyn has been lecturing to 4th Year med students on a monthly basis for some time now and they have a lot of great questions. She has a really good feeling about this next generation of doctors and hopes someone will fill the niche and become a TS specialist in NZ!
Tourette's on TV
There was a TV crew at the inaugural Camp Twitch who filmed a segment for TVNZ’s 7Sharp programme. The public awareness skyrocketed and the dynamic changed really quickly.
All of the sudden Robyn became the ‘go to’ person for Tourette’s in New Zealand!
Questions piled in from the public and people started phoning up, asking if their child has Tourette’s, asking where they could go for help. Teachers were phoning for advice as they thought a student was displaying symptoms of Tourette’s. Calls kept flooding in from psychologists, lawyers, schools, Oranga Tamariki (Ministry for Children) and even the police!
As Robyn explained it’s not uncommon to be bullied in school or public if you are child or an adult with TS. As a result, some TS sufferers have physically lashed out due to heightened anxiety and stress which then becomes a legal issue.
A one-hour documentary about Camp Twitch and two six-episode series followed on TV a few years later but it turned out to be a double-edged sword.
There was great public awareness and many of those featured in the show managed to leverage life-changing treatment but that same treatment is not readily available to everyone.
While TANZ is thrilled for those who have benefited from the shows, the public perception was that everyone with TS was receiving the support and treatments they needed. This resulted in donations because people thought ‘they don’t need help anymore’.
It’s a tricky one. You want the awareness and the success for those involved but new people are diagnosed daily and they don’t get such a powerful voice as those featured on TV.
With the misconception that TANZ had become successful at funding itself and the services it provided, last year it didn’t receive any grants or sponsorship like it had in the past. It meant it couldn’t afford to sponsor underprivileged families to camp as it had once done.
“It upsets me when kids can’t come to camp for financial reasons. It’s not their fault or their parent’s fault. It is usually those children who live in very isolated places who can’t get the community support to fundraise to come to camp. It’s a real shame because it is these kids who are geographically isolated who benefit the most from meeting others like them, to know that they are not alone and that there are others just like them too. That experience goes an incredibly long way to help raise their self-confidence and to not feel so alone.”
Robyn said that the way the public and businesses donate to charities has changed radically in the past ten years with grassroots fundraising efforts like bucket collections and sausage sizzles becoming a thing of the past.
The current practice in the not-for-profit sector is to hire professional fundraisers and grant makers but when you have a team of one and no income there is no way small charities can compete with the better-known, better-supported charities.
“TANZ is no different to other smaller charities when it comes to fundraising being too costly on a limited budget. It’s just the nature of competition regardless of what sector you are in.”
Givealittle is always open though and does make a difference to the organisation’s running costs. https://givealittle.co.nz/org/tourettes
Media & Communications
Social Media – Facebook: Five years on, the TANZ Facebook has over 1.5k people on their page… facebook.com/tourettesyndromenz/ with an adjoining support group of over 300 members who chat on a daily basis. Being a place to share and find advice and support through tough times.
Website: Robyn has developed a thorough website https://tourettes.org.nz/ to cut through all of what she had to learn the hard way. They are getting 700 x new visitors a month.
YouTube: With over 15,000 subscribers? One of the TANZ YouTube videos has reached well over 4 million views https://www.youtube.com/channel/UCYq-c5Bm6PdbmjTekpprltA. They gather some revenue there too.
E-News: TANZ puts out a regular e-mail newsletter to their database. Usually the start-up conversations come through the website and e-mail – [email protected]
The big goal
To have a designated piece of land so they can hold a Camp Twitch EVERY holiday, not just once a year. They would need purpose-built dormitories with one-bed-per-room as many TS sufferers have anxiety about sleeping in shared spaces and they usually tic in their sleep. You can’t have them all waking each other up!
Robyn has discovered that the kids do not tic when they are around horses and dogs! By that rationale, stray horses and dogs could live on the property. Pet therapy works for anything neurological and it works for kids with TS as well.
We asked Robyn if she ever ‘puts herself first’…?
As with most of us, Robyn admits she really doesn’t put herself first enough.
Her day-to-day job for TANZ is Mon-Fri, 9am-5pm; talking to teachers, social workers, health professionals, lawyers, police etc. But parents also work 9-5, so they ring at night time during the week and right across the weekend.
She only gets paid for 20 hours a week, yet she works 60+ hours.
Her personal goal, to start putting herself first is… to chop her hours down to 30 hours a week. She knows full well that you need to have time out to recharge your batteries because if she gets burnt out? She can’t help anyone and “you need to be happy yourself to be able to help somebody else.”
Robyn’s top charity tips:
- You must have passion and truly believe in what you are working towards!
- I wish someone had told me to take off the rose coloured glasses and find out the right advice from the right people first.
- Get good people around you
- One step at a time. You can’t change the world overnight. So I’ve learnt ‘just take my time’, get people behind me and build up ammunition.
- Cross all your T’s and dot all your I’s.
- You can make change, but it takes time. Just time and getting those people together. Behind you.
- The right people find you at the right time too.
Robyn’s officially been dubbed one of our CH’I Community Heroes! We’ve gotten to know Robyn and the TANZ organisation by sending in CH’I Drinks to Camp Twitch for several years now. They are always so happy, grateful and excited as they are usually in throws of the Camp and it’s an amazing time for all. TANZ also won our ‘Community Photo of the Year’ award in 2018!
KNOW AN UNSUNG COMMUNITY HERO?
If you know someone working for the community, who is always going above and beyond the call of duty and making great changes along the way? Contact us anytime and tell us about them at – [email protected] . We’ll see if we can help their organisation with refreshments for their next event or fundraiser.