Eight years ago, my wife and I sent our daughter, Tess, to kindergarten. Like any child, she was anxious and a bit resistant, but attended classes during the first few weeks. By mid-semester, however, she was vigorously protesting every morning.
At about this time, she began clearing her throat, blinking her eyes and sniffling throughout the day. The frequency of these behaviors increased and eventually became disruptive and difficult for her in class.
While we initially thought she was developing allergies, it became clear to us via observation and family history that our daughter had Tourette Syndrome, a neurological disorder characterized by repeated involuntary movements and uncontrollable vocal sounds called tics.
We saw our confident, vibrant daughter become a withdrawn and depressed child battling her body, making sounds and movements she could not control. Our younger daughter, Paige, now 8 years old, was also diagnosed with Tourette and joins her sister in the struggle with this disorder.
In our search for information and support, we contacted the New Jersey Center for Tourette Syndrome (NJCTS) and were immediately provided with written information about the disorder and resources throughout the state. NJCTS is a part of the Tourette Syndrome Association (as TSANJ) and collaborates with Rutgers University, the National Institute of Mental Health Genetics Sharing Repository and hospitals throughout the state of New Jersey.
Over the years, we have benefited from NJCTS-sponsored activities and services such as family retreats at YMCA’s Camp Bernie and support groups at the Rutgers Graduate School of Applied and Professional Psychology.
It is through these programs that we have received support from other families affected by Tourette, and where my daughters have had the opportunity to meet others dealing with this misunderstood and isolating disorder.
The NJCTS has made a significant impact on our lives. It has helped thousands of others through their educational and outreach programs, and holds the promise of a greater understanding of TS through the establishment of the Sharing Repository, a resource of clinical and genetic data at Rutgers University. It is the first and only program of its kind in the nation and serves as a model for others to follow.
We greatly appreciate and depend upon the commitment and passion of the NJCTS staff and strongly recommend the NJCTS and affiliated groups to families with loved ones recently diagnosed with TS and associated disorders.