Tourette Syndrome

A.      How does it feel to be the parent of your child?

When I first discovered my daughter, Stella, had Tourette’s Syndrome, I thought God had punished me for doing something wrong. I did not understand and could not understand why Stella was inflicted with this disease.  I did a lot of soul searching and have come to the conclusion that Stella was not a curse, but a blessing. She has taught me more about myself than I would have learned had she not been diagnosed. For example, when people stare at her I bring out the positive aspect of her illness. I tell people she is one of God’s special angels and she is here to teach us how to accept one another regardless of what she looks like or how uncontrollably she may act through no fault of her own or anyone else’s.

B.      How is your child developmentally the same or different from other children at various ages?

Stella, who is 10 years old, is developmentally the same as other children her age. I understand that people with Tourette’s do not have a clear cut developmental delay even as they get older. It is only the physical outwardness that makes the disease obvious. Her behavior issues may be a problem because of the uncontrollable onset of tics she displays which allots her special attention; however, her intelligence is not affected at all. I have talked to my doctor about what the possibilities are in her characteristic behavior and he has warned me that the worst symptoms develop in the early teens and then taper in the late teens while continuing into adulthood.

C.      What professionals/agencies do you deal with? What services are available to you and your child?

I have a support group I meet with once a month to help me with my emotions when I get overwhelmed with Stella’s behavior. I also have a chat room available so I can log on and connect with people all over the world who are in the same situation as I am in. We may discuss anything and everything about Tourette’s. Finally, I have my own doctor to thank, who connects me with fabulous resources such as books, magazine articles, families affiliated with Tourette Syndrome and special non-profit organizations who host camp sites especially for Stella and others who just need to discover someone else with the same symptoms and how they deal with it.

D.      How did you find out about the above services?

I found out about the services I mentioned by doing research and talking to other families whose children have similar disabilities like Autism.  Another place I looked into was finding a clinic that specializes in Tourettes.  When I have to take Stella to the emergency or take her in for a check-up I take her to CHOC Hospital (Children’s Hospital of Orange County) where they have highly rated and qualified physicians specializing in different disorders. I have a neurologist who checks for any changes of any disturbances of the neurotransmitters of the brain which carry nerve signals from cell to cell which may play a role in TS.

E.       What financial burden, if any, are you experiencing?

Yes, it is very expensive to see doctors and therapists on a constant basis. No one ever prepared me for the financial and emotional rollercoaster I have been placed in. Thankfully I have my church to help me with any financial burden I may have through fundraisers and donations. I feel very blessed to have such a great support group.

F.       What other information do you want to share?

I would like to share with other parents who are just experiencing the beginning stages of Tourettes disorder or any other disorder that there is always help. Reach out to your families, neighbors, church counselor, and teachers. There are people who will support you through this even though you may feel you are all alone. There is a great website:

http://www.webmd.com/mental-health/tc/tourettes-disorder-other-places-to-get-help

that will provide you with different organizations and centers of neurological disorders especially geared for any child to receive help with mental and physical disorders.