{"alias":"blogEntry","byline":"Nicola Hilliard, Creative Content Producer","standfirst":"","content":{"layouts":[{"type":"singleColumn","areas":[{"items":[{"gridType":"RichTextBlock","content":"\u003Cp class=\u0022p1\u0022\u003ELuke\u2019s an 11-year-old Scout. He also has Tourette\u0027s syndrome.\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003ETourette\u0027s syndrome is a condition that causes a person to make involuntary sounds and movements called tics. People with Tourette\u0027s syndrome have a combination of physical and vocal tics.\u00A0\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003EFor some people, tics are not always visible. For example people can experience internal tics, such as stomach clenching and thought tics.\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003EHaving a tic is hard to control. The motor and vocal tics of Tourette\u2019s are involuntary, meaning that people don\u2019t do the tic on purpose. Tics can be worse on some days than others, too.\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003EAt times, Luke worries about how people would react to his tics, especially as they evolved from non-verbal to verbal.\u00A0\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003EDespite his fears and anxiety that comes with this, Luke\u2019s never given up, showing lots of courage by making a decision to give a talk during his time in Cubs about his condition.\u00A0\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003EWe caught up with Luke and his mum, Karen, to find out more.\u003C/p\u003E","gtmId":"","gtmClass":""},{"gridType":"gridImageBlock","gtmId":"","gtmClass":"","image":"/media/rklbp0rr/luke-smiling-at-camera-in-his-cubs-uniform-with-certificate.jpeg","width":1161,"height":1458,"altText":"Luke smiling at camera in his Cubs uniform","caption":"Luke at Cubs","link":null},{"gridType":"RichTextBlock","content":"\u003Ch4 class=\u0022p1\u0022\u003E\u003Cstrong\u003EHi Luke! Can you tell us a bit about yourself?\u003C/strong\u003E\u003C/h4\u003E\n\u003Cp class=\u0022p1\u0022\u003EI\u2019m Luke and I\u2019m 11 years old. I have Tourette\u2019s, autism and ADHD. I love playing football and playing online games with my friends.\u003C/p\u003E\n\u003Ch4 class=\u0022p1\u0022\u003E\u003Cstrong\u003EWhat do you like doing at Scouts?\u003C/strong\u003E\u003C/h4\u003E\n\u003Cp class=\u0022p1\u0022\u003EI like to explore and make food. I love going on camps and having marshmallows around the campfire.\u003C/p\u003E","gtmId":"","gtmClass":""},{"gridType":"RichTextBlock","content":"\u003Ch4 class=\u0022p2\u0022\u003E\u003Cstrong\u003EWhat\u003C/strong\u003E\u003Cstrong\u003E\u2019\u003C/strong\u003E\u003Cstrong\u003Es it like having Tourette\u0027s?\u003C/strong\u003E\u003C/h4\u003E\n\u003Cp class=\u0022p2\u0022\u003EIt\u2019s annoying, because you don\u2019t know when or how many times each day you\u2019re going to tic. It can be painful and my neck tics are my worst for pain. My tics can also be funny sometimes too, like when I mimic other people. I\u2019ve said that if I laugh at my tics, my friends can too, but you shouldn\u2019t laugh at a person having tics or Tourette\u2019s\u003C/p\u003E\n\u003Ch4 class=\u0022p2\u0022\u003E\u003Cstrong\u003EWe know you spoke to your Cub pack about having Tourette\u0027s. Why did you decide to talk to everyone?\u003C/strong\u003E\u003C/h4\u003E\n\u003Cp class=\u0022p2\u0022\u003EI wanted everyone to be aware that I have it, so they knew and weren\u2019t wondering where the squeaks were coming from in the tent at night.\u0026nbsp;\u003C/p\u003E\n\u003Ch4 class=\u0022p2\u0022\u003E\u003Cstrong\u003EWhat was it like speaking to everyone?\u003C/strong\u003E\u003C/h4\u003E\n\u003Cp class=\u0022p2\u0022\u003EI was nervous, but everyone was calm and understanding.\u003C/p\u003E","gtmId":"","gtmClass":""},{"gridType":"RichTextBlock","content":"\u003Ch4 class=\u0022p1\u0022\u003E\u003Cstrong\u003EHow have you felt since doing the talk?\u003C/strong\u003E\u003C/h4\u003E\n\u003Cp class=\u0022p1\u0022\u003ESince doing my talk, I feel more confident about having tics in front of the group. Everyone knows about it, so they aren\u2019t wondering what I\u2019m doing. I\u2019m happy to do another talk for the Cubs as part of the Disabilities Awareness badge too.\u003C/p\u003E\n\u003Ch4 class=\u0022p1\u0022\u003E\u003Cstrong\u003EHow do your friends and Scout volunteers help you at your meetings?\u003C/strong\u003E\u003C/h4\u003E\n\u003Cp class=\u0022p1\u0022\u003EEveryone at Scouts is always supportive and understanding. The leaders are always friendly and laugh along with me if my tics are funny, which makes me feel more relaxed. They\u2019re also really good at knowing when I\u0027m struggling and I can pop out of the hall if I feel the need to. We always let them know of any new tics, so they know if I\u2019m struggling with anything in particular. My eye tics were really bad one night, so I didn\u2019t do the knife work that night, but did something I\u2019d find easier. I then did the knife work the week after, so they\u2019ve been amazing with helping me with the activities too.\u003C/p\u003E","gtmId":"","gtmClass":""},{"gridType":"gridImageBlock","gtmId":"","gtmClass":"","image":"/media/zcwk0f5f/luke-giving-a-thumbs-up-with-den.jpeg","width":1536,"height":2048,"altText":"Luke giving a thumbs up with den","caption":"Luke in a den","link":null},{"gridType":"RichTextBlock","content":"\u003Ch3 class=\u0022p1\u0022\u003E\u003Cstrong\u003EWays to support someone with Tourette\u2019s\u0026nbsp;\u003C/strong\u003E\u003C/h3\u003E","gtmId":"","gtmClass":""},{"gridType":"accordion","gtmId":"","gtmClass":"","showExpand":true,"items":[{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp class=\u0022p1\u0022\u003EYou should avoid commenting or reacting to the tics, too. This may worsen the tics and make the person feel upset, distressed, or ashamed.\u003C/p\u003E","label":"Always ignore the tics as much as possible"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp class=\u0022p1\u0022\u003EAlways talk about what\u2019s best with the person and, if they\u0027re a young person, their parents or carers. They might have things in place at school, home, college or work that works they could replicate at Scouts. Take a look at our \u003Ca href=\u0022/volunteers/equity-diversity-and-inclusion/including-disabled-and-neurodivergent-people/building-partnerships-with-parents-and-carers/\u0022 title=\u0022Working in partnership with Parents and Carers\u0022\u003Eguidance on working with parent and carers\u003C/a\u003E to find out how to start a conversation.\u003C/p\u003E","label":"Ask them what helps"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp class=\u0022p1\u0022\u003EMake sure any medication is stored safely and securely during sessions or on Nights Away, if needed. Take a look at our guidance on medication.\u003C/p\u003E","label":"Store medication safely"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp class=\u0022p1\u0022\u003ESpeak to the person to see if there\u2019s a comfortable seating arrangement they\u2019d prefer during the meeting. Some may need to exit frequently, so sitting near the door and having permission to leave might be helpful.\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003EAlways let the person work in a position that they feel comfortable with.\u0026nbsp;\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003EDepending on the person\u2019s tics, you may want to give them more space if someone has a touching tic or large motor tics involving limbs.\u003C/p\u003E","label":"Make sure they\u2019re comfortable"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp class=\u0022p1\u0022\u003EMake sure to allow give people more time to complete tasks if they need or want it. For example, you could offer one main activity, with some smaller activities provided for if anyone finishes quickly. This makes sure everyone has a chance to complete the main activity.\u003C/p\u003E","label":"Allow more time"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp class=\u0022p1\u0022\u003EAll volunteers should make reasonable adjustments so that Scouts is inclusive and accessible to everyone. There\u0027s a lot of \u003Ca href=\u0022#\u0022 title=\u00224. Local organisation of sections, Groups, Districts, Counties\u0022\u003Eflexibility in Scouts\u003C/a\u003E and in our programme to make sure all young people can enjoy the adventure. This includes flexibility in badges and awards.\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003EFor example, if handwritten work has limitations due to tics, always allow use of alternative means of work, such as for badge work. People could use keyboards, record video or audio, make a collage or have a friend write for them.\u0026nbsp;\u003C/p\u003E","label":"Make reasonable adjustments to the programme"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp class=\u0022p1\u0022\u003EYou may want to have a more private area or break-out space, especially at events and camps, where people can feel comfortable to go if things get too much.\u0026nbsp;Always follow the Yellow Card.\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003ESome people can control their tics for a short while in certain social situations, such as in a classroom. However, it requires concentration and gets easier with practice, but controlling tics can be tiring. A break space can offer rest or privacy.\u003C/p\u003E\n\u003Cp class=\u0022p1\u0022\u003EFor longer sessions or projects, make sure they\u2019re in smaller chunks or divided into shorter manageable tasks, with plenty of scheduled breaks.\u003C/p\u003E","label":"Have a breakout space"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp class=\u0022p1\u0022\u003ELook out for and prevent teasing or bullying. For example, this might mean talking to everyone about the code of conduct for your section or having extra adult supervision in unstructured or less structured settings, such as free time.\u0026nbsp;\u003C/p\u003E","label":"Prevent bullying"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp class=\u0022p1\u0022\u003ERepetitive large muscle tics and attempts to suppress tics can cause fatigue, which may need an increase in calorie intake. Always allow the person to take breaks and you may want to ask them if they want to bring snacks. Similarly on camps or events, allow for snacks between meals and offer a break-out space, especially during or after more active games.\u003C/p\u003E","label":"Provide snacks and space to rest or to boost energy"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp\u003EIf possible, and only with the person\u2019s consent, you may wish to run a talk or presentation to raise awareness about Tourette\u2019s Syndrome. This also lessens pressure on the person to explain or disguise tics, which may be helpful in itself.\u003C/p\u003E\n\u003Cp\u003ERemember, this can be led by anyone. The person with Tourette\u2019s Syndrome may not feel comfortable to talk or contribute. It\u2019s up to them how involved they are happy to be, whether that\u2019s lots or not at all.\u003C/p\u003E","label":"Educate and raise awareness"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp\u003EAny situation that is very quiet, for example Remembrance, may cause extra stress. You may wish to offer alternative activities during this time or have a comfortable space people can move to if they wanted to.\u003C/p\u003E\n\u003Cp\u003EAnother example of a stressful situation for some people can be public speaking or reading aloud, especially when vocal tics are bad. You may wish to find an alternative, such as just one person reading.\u0026nbsp;\u003C/p\u003E\n\u003Cp\u003EYou may wish to have a non-verbal response for people to use to feedback, such as thumbs up or thumbs down. You could also ask closed-questions, which can be responded to by nodding and shaking the head. People could also write down and hold up their answers on a whiteboard, or they may work with a partner who can help them.\u003C/p\u003E","label":"Reduce stressful situations, such as public speaking"},{"gridType":"accordionItem","gtmId":"","gtmClass":"","body":"\u003Cp\u003EThe attention that tics can attract, along with the feeling of being different from your peers, can often result in low self-esteem. Rewarding people with praise for good work, good behaviour or overcoming personal challenges can be an effective way to motivate and give them a sense of achievement.\u003C/p\u003E","label":"Help boost self esteem"}]}]}],"config":null}]},"searchDescription":null,"pageType":null,"location":null,"versionDate":"04 June 2024","reviewDate":null,"furtherReading":[{"caption":"","title":"NHS Tourette\u0027s Syndrome","url":"https://www.nhs.uk/conditions/tourettes-syndrome/","newWindow":true},{"caption":"","title":"Tourette\u0027s Action","url":"https://www.tourettes-action.org.uk/","newWindow":true}],"relatedLinks":[{"caption":"Find out more","title":"Supporting people with additional needs","url":"https://www.scouts.org.uk/volunteers/equity-diversity-and-inclusion/supporting-people-with-additional-needs/","newWindow":true},{"caption":"Take a look at our guidance","title":"Working with Parents and Carers","url":"https://www.scouts.org.uk/volunteers/equity-diversity-and-inclusion/supporting-people-with-additional-needs/working-in-partnership-with-parents-and-carers/","newWindow":true}],"id":79944,"nodeName":"Meet Luke, who taught his Cub group all about Tourette\u0027s syndrome","title":"Meet Luke, who taught his Cub group all about Tourette\u0027s syndrome.","type":"blogEntry","image":{"url":"/media/w4unnnvw/luke-smiling-at-camera-in-his-cubs-uniform.png?width=800\u0026height=450\u0026v=1dab8006b023af0","caption":"Luke Smiling At Camera In His Cubs Uniform","type":"png","size":737496,"width":940,"height":788,"altText":""},"assets":null,"headerOptions":{"headerTitle":"Meet Luke, who taught his Cub group all about Tourette\u0027s syndrome.","headerSubTitle":null,"headerCta":null,"headerCtaText":null,"headerCtaLink":null,"headerBackgroundColour":null,"showSEOImage":false,"headerBackgroundImage":null,"quickLinks":null},"subHeader":"Luke\u2019s a 11-year-old Scout. He also has Tourette\u0027s syndrome. Find out how Luke decided to give a talk in Cubs about his condition.\u00A0","browserTitle":null,"silktide":"eyJjbXMiOiJVbWJyYWNvIiwiZWRpdG9yVXJsIjoiaHR0cHM6Ly9wcm9kLWNtcy5zY291dHMub3JnLnVrLy91bWJyYWNvIy9jb250ZW50L2NvbnRlbnQvZWRpdC83OTk0NCJ9","canonicalUrl":"https://www.scouts.org.uk/news/2024/june/meet-luke-who-taught-his-cub-group-all-about-tourettes-syndrome/"}