In the summer of 2021 I was lucky enough to discover an online conference held by NJCTS – New Jersey Centre for Tourette’s Syndrome, aimed at building confidence in young people suffering with Tourettes syndrome and enabling them to advocate for themselves and others, out in the community.
Because it was an online course, this meant that I could join in even though I was in the UK and there was a 5-hour time difference. Initially, I imagined myself joining in for a little while and then sneaking off to bed when I had listened and heard enough… this however didn’t happen and I found myself still attending at 2 am in the morning 2 days in a row.
The course was incredibly interesting and lots of fun; the people involved were very inclusive and really happy that I had joined them. It turned out that as an organisation, they already followed my blog and were already very impressed with my efforts at spreading the word and talking to people about my Tourettes. I felt that I had connected with some very interesting and like-minded people who totally understood and related to how my life was.
I made a video of my journey and the academy and interviewed the coaches and participants who all have Tourette’s Syndrome which you can watch below:
NJCTS – my journey to New York
In 2022 it was announced that the NJCTS Academy would be running live again. This meant that young people suffering from Tourette’s Syndrome (TS) would be able to apply to take part in a 4-day educational programme to be held at Rutgers University in New Jersey. What a fantastic opportunity for everyone! A bit sad for me that I wouldn’t get to enjoy spending time with everyone on zoom as I had done the previous year.
I didn’t dwell on it, although every now and again I would think how great it would be to join in, but how impossible it would be because of the distance and cost. As time went by I started thinking of ways I could finance a trip… it would be invaluable… I could bring back some leadership ideas to the U.K… I would get to meet some young people like myself who want to advocate and talk to people about Tourette’s…
Then I remembered that a while ago when I was involved in my project with the BBC, a small Cornish charity stand-for.co.uk contacted me to say that if there was ever anything I needed to help with my quest to teach people about Tourette’s syndrome and it’s complexities, I should reach out and ask them. I felt that this project was something worth sponsoring and so I approached them to apply. I was very lucky and extremely grateful to be awarded the money to fly over to America and cover the costs. My dream had come true and I was going to the NJCTS Leadership Academy 2022.
On August 2nd we set off to London where we stayed overnight in a hotel and on the morning of the 3rd we boarded our flight to Newark Airport, New Jersey. The flight was to be 7hrs long and we had planned it so that we arrived in the evening American time and could go straight to bed ready to start a busy day at the academy the following morning.
Some Hints and Tips for travelling
• WEAR A SUNFLOWER 🌻 LANYARD
Travelling with a sunflower lanyard proved invaluable, especially at Heathrow airport, where I was treated kindly and with respect, no questions asked. It enabled me to miss the long queues which meant my anxiety was lessened and my tics reduced.
• PRE-ARRANGE PRIORITY BOARDING
The next important thing I would advise a traveller with a hidden disability is to prearrange priority boarding. At first, I felt I didn’t want to cause a fuss and would be happy to wait my turn. As the flight time approached I realised that it would be sensible to board the plane early. It was fantastic – it meant that I had time to accustom myself to my surroundings.
• PACK YOUR TRAVELLING ESSENTIALS
I had plenty of time to gather around me all the things I would need to make the flight work for me – headphones, laptop, tangle toys, book, water… There was no stress because there was still no one else around and no hurry. I felt so calm and relaxed. I had made a list before I left home to make sure I hadn’t left anything behind! (Another good tip!)
After a calm and very smooth flight (and many films!) we arrived in New York! The excitement had begun!
Rutgers University, New Brunswick
We took a 40-minute train ride to New Brunswick, in the state of New Jersey and stayed in an Inn on the Rutgers University campus.
It turns out that the university campus is enormous! We had to catch a 20-minute bus ride to the side of the campus where my residential course was to be held. We learnt that there are 5 campuses in New Brunswick alone and more than 50,000 students! In August there are no students so we had the place more or less to ourselves!
Arrival at the Academy
We were met by a group of very welcoming people representing NJCTS, who were all very excited that we had been able to attend, all the way from the UK. I was immediately made to feel welcome.
The format of the residential was for 20 young teenagers around my age, to be inspired by older college-age students with TS who were called Coaches. The whole course was for us to be taught how to gain the courage and skills to advocate for our disability out in the wide world. For some that may be just gaining the courage to talk to their friends about it; for others, like myself, who are already taking steps forward to educate people, it was all about taking this to the next level and teaching us how to go about talking to institutions and explaining what Tourettes is and what they can do to help in a difficult situation. Some of the coaches regularly talk, not only to schools and colleges but to the police, ambulance services, hospitals etc.
We were soon swept away and taken to meet our ‘Dormies’ and ‘suitemates’. Parents were asked to leave at this point and it was time to throw myself in at the deep end! Everybody was so kind, welcoming and relaxed – I was surrounded by people who understood and were happy to enjoy the moment without suppressing their tics. Even the nurse had Tourettes. It was fantastic!
The first thing we did was a zoom meeting with Tim Howard who puts his name to the Academy. He is a soccer player who played goalkeeper for Manchester United and Everton in the UK. In 2001 he was named MLS Humanitarian of the year for his work with children with TS and was added to the board of governors of NJCTS. In 2014, the U.S. Tourette Syndrome Association described him as the “most notable individual with Tourette syndrome around the world” and was deemed “Champion of Hope” for the “tremendous courage he displayed in sharing his story on an international platform, educating the public on a disorder that is so seldom talked about, and encouraging young people living with TS to speak out about their experiences”.
We were able to talk to him and ask him questions. I asked him whether he was ever worried about ticcing while presenting the sports TV show he now works on. He replied that the people who employed him knew what they were taking on and that he wasn’t concerned about it at all.
During a similar Q and A the year before on the online course, I asked him how things were regarding the acceptance of TS in the UK and the US. He replied that we were many years behind over here in the UK. This is one of the reasons I felt I wanted to attend the course and try to bring some of the ideas back here to help children and young adults in the UK advocate for themselves and to create a similar rolling system where the older students coached younger ones and so forth.
A very important part of the Academy is spending recreational time with other young people with TS. We chatted, played games and generally had a lot of fun. If at any point we needed some downtime we were always welcome to rest quietly in our rooms without any pressure.
As time went on and we all relaxed in each other’s company the tics got more frequent and probably louder! A cacophony of words and sounds would echo around the room and a group of very happy young people enjoyed a fabulous time, not even noticing what was going on. It was so refreshing. It’s very hard to explain to people without TS how difficult it is to go about everyday life feeling that you have to choose, as best you can, when would be the most appropriate time to tic and how best to disguise it. At times it can be torture!
Once each day we would be split into small groups with five participants and two coaches. This meant that we had plenty of time to get to know our coaches and were able to talk to them about our concerns for the future… driving, college, jobs etc. I have never spent time with a group of people with TS in this situation.
We were then lucky enough to meet Doctors and specialists in our small groups and learn all about their skills and specialisms within the TS community. It was so interesting and refreshing to be able to talk to them and ask questions. At no point where we made to feel intimidated or uncomfortable. We all learnt so much about the condition and some of the things that are available to try and relieve the tics.
One of the activities that day was shoe painting. It was really interesting to see how everybody came up with different ideas and what a great selection of colourful shoes was created!
We also had a music workshop with coach Sarah who is a songwriter and plays the harp. Like myself, she finds music a complete relief from her tics.
On day 3 we were given the fantastic opportunity to visit a laboratory on campus where scientists are undergoing a very important study regards the genetics of TS. We were given a tour of the laboratory and were given a talk about what was involved and what the scientists were looking for.
I found this part of the day particularly difficult. In the UK I have an exemption for wearing a mask because it makes me tic really badly and is unbearable. In the US there is no such exemption, and unless you are physically unable to wear a mask, then it is obligatory. I had to do a lot of suppressing to get through this part of the day which was particularly long and extremely hot. Sadly, that evening I had a tic attack which set off a few other incidents with other people. I learnt from this that it really isn’t worth putting myself in this sort of situation, because of the result. It reinforced in me that avoiding school assemblies church services or quiet events where I feel it would be inappropriate to tic is the right thing to do to avoid difficulties later. It made me realise how important it is to speak up and excuse oneself or allow special provisions like boarding a plane early, without feeling guilty or embarrassed.
In the evening we had a really fun time doing karaoke, eating ice cream and generally having lots of fun.
Day 4 was our final day. We had a final brunch together and there was an award ceremony where we received certificates and congratulations. Many photos were taken and sadly it was time to say goodbye.
I really can’t thank the people who enabled me to attend this residential enough. It was the trip of a lifetime. I met some fantastic people, made friends for life, learnt so much and had the best time! It was both educational and fun and I loved every minute of it!
Trip to New York City
And of course, we couldn’t travel all the way from Cornwall to New York without visiting the City. It was AMAZING. There was so much to see and do – boat rides, theatre, shopping, to name just a few; and eating all things American! Donuts, pizza, bagels, waffles… it’s all there in New York City and I feel so grateful to have had this fantastic opportunity. Now I just hope that I can put together all the things I have learned and bring some of these ideas back to the UK. Watch this space!