As a parent of a child with Tourette Syndrome these 8 things are obvious. Here is my list of what I want folks to know:
- I have looked into ways of helping my child with tics and each kid is different. Saying it is sugar or video games is not the cause of the condition.
- Telling my child to stop or calm down does not help—it makes it worse.
- When you speak of his condition in front of him (just like any condition) he can still hear you!
- No, there is not a “fix it all pill.”
- The best medicine is for the person the child trusts to allow them to work one on one (without anyone interrupting us) each time a new tic comes on or when an existing one is worse than the last 6. Ignore it and let the parent handle it—please—and thanks!
- Usually the best medicine in reducing the tics is physical play—whether it is cleaning, chores, fixing something, being given a challenging puzzle, helping a kid who is not as intelligent because YES most all kids with Tourette’s are also highly intelligent.
To add to the above, here are some things that would be helpful to hear to assist the parent/child:
- “I understand you need time, let me leave you all be. If you need assistance, please let me know how/what I can do to help.”
- “Is there anything the child has or a place the child can go that calms them down to help release the tics? If so let me establish a place in public forums for this to happen.”
- “I am aware that the tics will change from day to day depending on various ways each child’s mind works—that is the whole reason each is different is due to the brain waves in each human mind working differently. No two stars are alike, no two snowflakes, and no two brains will ever be the same…ever and yet it is refreshing and scary all at the same time—same with death…no two deaths are the same and it is impossible to predict.”
Here is what would be helpful to reduce the amount of work I have to put into each public arena (i.e. school):
- Mandatory conference that all school staff attends—especially nurses or aide givers in the school should know how to handle a child with tics.
- Areas where a child can go with any neurological or physical disability where they can “let loose” and get their mind clear however they need.
- Natural examples of how the mind can heal itself from anything it is thinking.