Parenting a Child With Tourette Syndrome

James Durbin - American Idol contestant with Tourette Syndrome

It is Tourette Syndrome Awareness month, so I decided to write a few things about parenting a child with Tourette's.  Tourette Syndrome (TS) is a neurological disorder that causes uncontrolled movements and sounds called tics.  Some examples of tics include eye blinking, shoulder movements, neck stretching, jumping, throat clearing, and sniffing.  If you have a child with a tic disorder, you know how frustrating it can be.  You know how misunderstood it is.  Your child knows it, too.  Every case of Tourette Syndrome manifests differently.  Your child is unique, as are his or her symptoms.  I am grateful to have shared an incredible journey the past 17 years with my son.  Here are some of the things we learned along the way.

• As a parent, take care of yourself.  You are your child's best advocate.  You are the one on the frontlines.  Make sure you take care of your own health--both physically and emotionally, so that you can help your child.  Tourette Syndrome can be relentless and exhausting for both child and parent, so don't feel guilty about making time for yourself.
• Exercise your patience.  If you could have an endless supply of patience, it would be great!  But since that is unlikely, develop as much as you can, and when your patience is running low, tread lightly, or better yet, take a few minutes away from the situation.
• Have a sense of humor.  Second only to patience, humor is a necessary survival tool.  Early on, my child and I made bad jokes about tics like "What is your favorite game?"  "Tic, tac, toe."  Or, "Who is your favorite superhero?"  "The Tick."  You get the idea.
• Enlist support.  Although I never attended a formal support group, looking back I realize how much support I had in other ways.  I was able to talk to other families dealing with TS.  I had great medical support for my child.  My son was blessed with great school administrators, teachers, and coaches.  He had very patient music teachers.  He had good friends and great family support as well.
• Educate yourself.  Information is power.  The National Tourette Syndrome Association is a great place to start.  I read books and found TV programs dealing with Tourette Syndrome as well.  We enrolled in a research study, and gleaned additional information from the medical team we worked with during the study.  I also got advice from other people who had children or siblings with TS.  I am encouraged that more information is available now, and more easily accessible, than when we were first starting on this journey.
• Get professional help as needed.  My son was diagnosed during a research study, but that left us with no support when his tics flared.  Unable to get an appointment with a local neurologist, I called our pediatrician in a panic.  My son was experiencing severe, full-body tics that looked like seizures and were causing him pain, not to mention interfering with his ability to do anything.  Our wonderful pediatrician listened attentively, then said he would intervene for us, and a short time later we had the appointment with the neurologist.  Later, my son worked with a wonderful psychologist who helped him learn coping techniques like relaxation and hypnosis.

• Do your homework.  When our neurologist recommended a medication, I had already read up on it and felt comfortable with my son trying it.  The medication seemed to help, and after a couple of years when his tics had greatly lessened, we took him off the meds.  Medications are not without side effects.  My son was definitely a better version of himself once we stopped the pills.  However, the medication did help us over a rough spot. 
• Educate others.  You need a thick skin with TS.  Your child's symptoms will manifest publicly and you need to be prepared for that.  Don't educate every person you encounter.  But DO educate those in your child's life.  I have explained TS to family, and to my son's peers.  In elementary school, we presented information to ball teams, church groups, and school classes.  Our son wanted us to tell people.  It was a relief to him knowing people knew about TS.  
• Advocate for your child.  Our son's tics were at their worst in junior high.  We met with the vice principal, his teachers, and a school nurse. We wrote a "health plan" that was on file with all teachers.  We found people to be very helpful and supportive.  Once, at a parent-teacher conference, a teacher indicated he didn't want our son doodling so much in class.  We suggested our son doodled as a coping mechanism so he wouldn't tic in class.  The teacher reviewed our child's grades, and said if his performance in the classroom remained high, the teacher would overlook the doodling.  It was a simple matter handled in a conversation.  Try to keep things professional and matter-of-fact, even when your emotions are high.

• Be creative.  Because your child's circumstances are unique, you are the one who can come up with adaptations to help them.  For example, there was a time when my son was unable to play the piano at his lessons.  His tics were too violent.  We began recording him playing his pieces at home, and then playing the recording for the teacher at his lessons, and then writing down the feedback from the teacher.  Sometimes it took us a few recording sessions to get all the pieces recorded, but this was a huge help to my son, who wanted to continue with his study of music.
• Help your child see themselves as a whole.  There was a time period when the Tourette's was so central to all of our lives that I think my son felt it defined him. Help your child see all of their wonderful qualities.  They are a person, who happens to tic.  Remind your child of all their other interests and abilities.  Perhaps they are kind, have a great memory, are artistic, have a great sense of humor, are good at sports, etc.  Point out that other people have things they are coping with as well.  It is highly likely your child knows someone with food allergies, asthma,  or some other difficulty that they cope with in life.  In that respect, your child is NOT unique.
• Find role models for your child.  For awhile, we had our radar up searching for people successfully living their lives with Tourette Syndrome.  Eric Bernoutas, an Olympic skeleton athlete, competed in the 2002 Winter Olympics right in my backyard.  My son was happy to cheer for him.  Utah author, Richard Paul Evans also has TS. 
• Repeat after me:  My child can't stop.  My child can't help it.  (Take a deep breath and remind yourself of this every once in awhile).
• Take the emotion out of it.  My child used to have horrible bouts of tics when it was time to do a particularly disliked household chore.  I learned to say he could do it when the tics stopped and walk away.  It was hard, but my son needed to learn how to live his life...and that included doing chores.
• Don't let TS become an excuse.  This one is tricky.  Know that TS can impact your child in many ways...not just physically.  It can interfere with schoolwork, socializing, and more.  Your child is coping with things others don't have to cope with, and there are times when making an exception or accommodation is appropriate.  However, there are times when you have to hold your child to the same standard as anyone else.  The better you know your child, the more likely you are to be able to walk this line.  Help your child participate in normal activities.  Encourage them to try things they want to do.  Keep life as normal as possible.
• Track your child's symptoms and tics.  Are they sleeping?  How are their behaviors at school?  Become an expert on your child.  Track any and all medications, dosages, when the meds were taken, any reactions.  Keeping good records helps you communicate with medical professionals, and helps you make informed decisions.  One thing you will learn about TS very quickly:  it follows no pattern and is not very predictable.

• Help your child be physically active.  We found that if our son exercised regularly, he slept better. Getting enough sleep helped reduce his tics.

Note:  many people with Tourette Syndrome also have symptoms consistent with OCD or ADD/ADHD.  My son does not have either of those conditions, and I do not have any advice specific to those additional needs.  Again, the national Tourette Syndrome Association is a good place to start.

Coming soon:  Tourette Syndrome in books and movies.