By Shawn Jackson
Many times when a child or teen has Tourette’s, they feel like they are all alone. More often than not, they’re the only person within their immediate vicinity that has it.
Compounding the feeling of aloneness is that no one else can really identify with the experience of not being in control of their body and voice.
As the parent or guardian of a child or teen with Tourette Syndrome, it’s imperative to introduce them to other Touretters (people with Tourette Syndrome). Being around a person or persons with a shared experience gives them a chance to open up about what it is they’re feeling in a way that they can’t with you, their counselors or their peers at school.
This doesn’t mean you have to be left out of their growth or even their conversations. Indeed, be ever present while giving them space to be themselves.
Resources for finding Touretters to speak tomorrow with don’t always have to be in person. This is why the internet was invented.
Facebook groups or support pages are an excellent resource for finding people all over the country who are looking for people to connect to that share their experiences, or to help in advocacy.
Another resource is MeetUp.com. This site helps people of like mind or similar hobbies to find each other and meet up. You may be surprised to find there are many in your town or city that also have Tourette’s and want to share their own stories. If one doesn’t exist for your city, create a MeetUp page and seek them out.
Perhaps the best known way to meet others, either online or in person, is the Tourette Syndrome Association. They have many resources and links from which you can find someone to connect your child or teen with (under your supervision). Another is the Brad Cohen Tourette Syndrome Foundation. They have annual conventions in different cities. Check their website to find out where and when they will be near you.
This is only a short list. And as more people discover what Tourette Syndrome is and isn’t, the list will grow.