Tuesday, September 10, 2013

Tourettes Tuesday: Tips for Parents

Welcome to the new Tourettes Tuesday Weekly posts! This week let's share some tips for parents of kids with TS.
  1. Let them Decompress: Yes I know it's hard not to unload everything onto them right as they get home but they have to hold it together every day at school. Let them decompress for an hour or so before you start to add anything else onto them.
  2. Warn in advance: It might sound odd but it's best to warn them about any change in a schedule or daily routine. Even something like "In a few minutes we'll have to do something else but the good news is you're the first to know". People with TS take longer to mentally prepare for things so the advanced warning helps relieve stress.
  3. Stand your ground in public: People are going to stare and some may even snicker. You're going to get a lot of "advice" from well meaning parents. Your child is different, not a freak and they have the same rights as everyone else.
  4. To medicate or not medicate?: There are great medicines that help sometimes and then there are some other therapies. And then there is the choice to not medicate at all. I've done all three with varied amounts of success. It's up to you and you alone to decide.
  5. Educate not Insinuate: TS has become pretty well known amongst teachers these days. Make friends with teachers and principals and partner with them. Hesitate to jump to conclusions when things don't come out your way.
  6. Listen to you child: It can get to the point where you are so busy taking care of your kids that you  forget to have time for them. Listen to what they want out of life. How is the medicine making them feel? How are they doing in school?
  7. There is no cure: This isn't meant to be a downer. Just know that your kid will be living with TS for a long time. Stop thinking in the short term with medicine and fab therapy and start thinking more about giving them life skills that will help them become well adjusted adults. 
  8. Invest in physical activity: A lot of my friends with TS are dancers and athletes. The physical activity seems to help with the decompression. 
  9. Invest in creative activity: A lot of my friends with TS are also artists, musicians, and theatre people. Most people with TS have exceptional creativity.
  10. It's gonna get better: It might seem while they're hitting puberty that the world is so hostile to them. But we eventually grow up and learn to live with our tics just fine. 
Borrowed from the CDC
Quick Note: I'm not a doctor. The only expertise I have with Tourettes is my personal experiences having it. What worked for me may not always work for you! Use your own discretion.

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