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Newsletters>
You Get the Diagnosis....NOW WHAT?
September 22, 2007
You get the diagnosis; you or your child has Tourette
syndrome. Now what do you do?
By Lydia Breer
When our son was diagnosed with TS when he was 6 years old,
we did not know how to help him or where to begin. As the
years passed (he is now nearly 14 years old) , I developed
a strategy and have passed this strategy on to other
families. Here is what worked (works) for us:
First, educate yourself and anyone else (teachers,
administration, grandparents, siblings, neighbors, coaches,
friend's parents) One way is to read books on the subject.
There are many books out there about Tourette syndrome and
the other complex coexisting disorders; disorders such as
Attention Deficit/Hyperactivity, Obsessive-Compulsive and
Bipolar disorders. "Children with Tourette Syndrome" by
Haerle and "Teaching the Tiger" by Dornbush and Pruitt are
two books that helped us "put it all together". Helping
your child understand TS is extremely important because
they need to play an active role in managing their
behaviors. Here are a few books written for children:
"Matthew and the Tics" by Pearl, "Quit it!" by Byalick,
"Hi, I'm Adam" by Buehrens, and "Don't Think About Monkeys
- Extraordinary Stories by People with Tourette Syndrome"
by Seligman and Hilkevich and "Front of the Class" By Brad
Cohen. All of these books can be ordered from Amazon.com.
Offer an education session with your child's school or
class. Educating peers is an important step in taking
charge of your life! Resources are available at our local
TSA chapter. The phone number is listed below.
Second, seek medical help
Often children and adults with TS have coexisting
disorders. Overlapping behaviors make it difficult to
determine which disorder requires medication. A qualified
neuropsychologist , neurologist or psychiatrist can help
you decide if medication will help your child manage
his/her tics, OCD or ADD.
Third, develop a support system
Join a support group. You can find one by calling TSA of
GA/SC at 706-248-9784 or go to www.georgiatourette.org If
one doesn't exist in your area, start one! A support group
brings you in contact with other parents/adults who are
experiencing the same things you are. I have learned so
much from the other parents in our group. These groups also
provide a social outlet for your child with TS. Social
situations are very awkward for our son. Knowing that other
kids have the same issues puts him more at ease. It is
vital that your child develop friendships. Support groups
level the playing field so your child can develop social
skills. In addition, we found talking to a psychologist
helpful. Checking in with this person has helped our son
vent frustrations/anxieties and she validates, supports and
offers strategies for dealing with his issues.
Fourth, take care of yourself
Caretakers need a break. Adults with TS need a break. Find
something that you love and do it. I found that it helped
to lower my expectations across the board: housework went
undone and unnecessary commitments were kept to a minimum.
Focus on you and your family and keep goals realistic.
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