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The Tourette Syndrome Association's NYC Counseling Program (NYCCP) is the only social work counseling service focused on Tourette Syndrome in the country. This model program provides high quality services to individuals with Tourette Syndrome and their families. Presentations on Tourette Syndrome in the New York City area are given in schools, hospitals, health centers and other settings, subject to scheduling and availability. As the program is funded by the City of New York, Department of Health and Mental Hygiene, services are available to NYC residents only. However, the program can be replicated elsewhere in the country through local funding.
The program provides counseling to individuals, couples and families, as well as support groups. This also includes when needed, advocacy, collaboration and referral to other professionals and allied organizations. Currently the program is running a weekly children’s group and a weekly parents group at the Bayside office.
The staff are New York State Certified Social Workers who have experience with the unique issues affecting people coping with TS.
Lynne Rosen, Certified Social Worker at the program's Brooklyn office has authored an article for Exceptional Parent magazine, "Family Dynamics in the Treatment of Tourette Syndrome" (click here to read).
By Emily Kelman-Bravo, LCSW,BCD, Program Director, TSA New York City Counseling Program
FUNDED SINCE ITS INCEPTION IN 1983 BY THE CITY OF NEW YORK, TSA's New York City Counseling Program (NYCCP) provides counseling to NYC residents with Tourette Syndrome (TS) and their families. It is a model program that can be replicated by pursuing funding from your local government officials. Several Support groups are also offered. Educational presentations are also provided to schools, hospitals and other settings upon request.
The Counseling Program works with the individual with TS and their family toward understanding and accepting their disorder. As the family accepts the individual with TS as one suffering from a neurological condition, guilt and blame can be replaced with mutual understanding and compassion.
If indicated, the Counseling Program also collaborates with schools, employers and vocational programs to address the impact the disorder has had in these areas of the individual’s life.
We also work with the physician if the person with TS is on medication or in need of an evaluation for medication.
Having TS and its associated behaviors creates a variety of problems. For children and adults, the teasing and blame they may experience from family and peers (who themselves may be ignorant about the disorder) can lower their self-esteem. The distraction from tics or associated behaviors may lead to difficulties for children at school and with peers, and for adults may create difficulties in the workplace.
While the focus of this article is on TS, the Counseling Program also helps address issues related to ADHD, OCD and other co-morbid disorders through counseling where indicated and referrals for additional services such as medication consultations.
COUNSELING SERVICES FOR CHILDREN AND ADOLESCENTS
The self-esteem of the TS child or adolescent can be adversely affected when the child, family or peers take a negative view towards TS symptoms. They may blame themselves for having tics and feel out of control because they can’t stop them. Those who can suppress tics at times may feel confused as to why they can’t suppress them all of the time.
Part of our individual and family counseling entails educating the child or adolescent and family about the neurological nature of TS. This helps to decrease the child’s negative feelings about themselves and to help family members deal with their issues. Because TS is a genetic disorder, parents often feel guilty about having passed it on to their child. They may be in denial even after receiving the diagnosis. The parents will be helped to accept the diagnosis and become more appropriately involved with their TS child.
Sometimes parents are over involved with their TS child or adolescent due to guilty or anxious feelings related to the disorder. Counseling for the parents helps them understand these issues so they can encourage their child to be more independent. If a parent also has TS and is struggling with their own issues about it, we help them separate their issues from their child’s.
Even once educated about the disorder, the family still has problems to solve. For example, family members may be annoyed at a loud vocal tic the TS child has. Is it reasonable or is it blaming the child to ask them to tic in another part of the home if others need quiet?
Sometimes there are sibling issues that need to be addressed in family sessions. For example, the sibling without TS may feel they get less attention than the affected sibling. They may feel overly responsible about not causing “problems” for their parents because they feel the affected sibling is draining them. The Counseling Program can help the family plan a course of action.
At school, staff may misinterpret the TS child’s or adolescent’s tics as negative behavior. In collaboration with the family, we can educate the staff about the disorder and interventions they can make to help the child if needed, such as a designated place to tic privately if desired by the child, unlimited time for tests, an IEP (Individualized Educational Plan) etc.
Peers may also be teasing and rejecting the TS child or adolescent. In counseling we help them develop strategies to deal with this.
The children’s groups we offer help the TS child to improve social skills, to have a supportive peer experience, and to feel less socially isolated. The group helps members to see that they are not alone in coping with TS and that others are struggling with similar issues.
The Counseling Program’s group for parents provides an opportunity to learn more about the disorder, how to manage TS and related issues affecting their child, share information, and meet others experiencing the same concerns. Parents also make connections, exchange ideas and resources, and “refuel”.
COUNSELING SERVICES FOR ADULTS
Many adults today went undiagnosed as children due to a lack of awareness about TS. It can be difficult for an adult to change the negative impact this may have had on them for so many years.
Peer relationships may be problematic, particularly if there is a history of having been chronically teased and rejected by peers. Relationships with family may be difficult especially if they didn’t know the diagnosis. In current relationships they may worry about whether to tell peers their diagnosis, risking rejection. They may worry whether someone will want to marry them given the genetic nature of this disorder. Adults with TS may worry about job discrimination. Some opt to suppress tics at the workplace, which may interfere with work performance.
The Counseling Program helps remind participants that they are people first. When both children’s and parent’s groups are running, it feels like everyone is part of a TS community center.
Recently programs were offered in the children’s group including a theater and a music workshop. Both were presented by individuals with TS. The members participated in new and creative experiences.
Please call the NYC Counseling Program to learn how its programs and services can help. Call (718) 224-2999 ext.227 or 228 for the Queens office or (718) 858-5985 for the Brooklyn office.
The program offers daytime as well as evening hours. For information or to make an appointment please contact the program at the following locations:
In Queens:
Tourette Syndrome Association, Inc.
NYC Counseling Program
42-40 Bell Blvd.
Bayside, NY 11361
(718) 224-2999
Emily Kelman-Bravo, LCSW,BCD Ext. 227 email: e.kelman-bravo@tsa-usa.org
or Evan Michaels LCSW Ext. 228 email: e.michaels@tsa-usa.org
In Brooklyn:
Tourette Syndrome Association, Inc.
NYC Counseling Program
26 Court St. Suite 504
Brooklyn, NY 11242
(718) 858-5985 Lynne Rosen LCSW
New York City Counseling Program staff are available to consult with TSA chapters, and regional or local contacts interested in putting together a similar program.
TSA Program Social Worker Wins Service Award
Evan Michaels, Social Worker in TSA's New York City Counseling Program was selected to receive a Certificate in Recognition of Excellent Service at the Queens Social Work Recognition Day Program. Click here to read the news release.
©2007 Tourette Syndrome Association, Inc. 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999