After the Diagnosis of Tourette Syndrome
Get started on the right track:
Your child is still the same–you just now have a “name” for the repeated actions or “tics” that you have been noticing.
You may be feeling guilty because you “missed” the diagnosis or you have been asking your child to stop his tics or pehaps even disciplining your child for actions caused by his or her disability–know that you are NOT ALONE! This is a common feeling of parents with a child with any special need and our consultants have heard it often. However, guilt is not productive, so do what you can to help yourself feel better and go to step
Arm yourself with knowledge by looking at this website and the many that we have included under our “Links Page.” You may also want to join our Facebook Support Group for help and support or see if we have an active local support group. Check out our YouTube Channel “Accept Tourette” for informational videos.
Having thorough knowledge of TS will help you to evaluate whether the Doctor(s) that you are presently using are also knowledgable about TS. (TS can be very complex and not all doctors are familiar with the range of symptoms and effective treatments.) View our updated Physician’s Referral List by request here to see if your physician is listed or to check for others in your local area.
Sign up for the “Access Card” through your county Assistance Office. This is a Medicaid Program for PA residents under 18 with a diagnosed special need and the child qualifies without regard to parental income. To apply online go to www.compass.state.pa.us or you can contact your local Assistance office by phone or visit in person. You will need to give them income information, detailed information on diagnosis, and you will get a reapplication package yearly. (This is a huge benefit and I strongly encourage everyone to sign up–Medicaid will always be the last payee if you have other insurance, but it will cover co-pays, prescriptions and most of the costs not covered by another insurance.)
Gain an understanding of the classic characteristics of a child with TS, often parents do not understand symptoms of TS vs. idiosyncrasies of their own child’s personality. Review the TS Primer for a list of the Associated Disorders and Possible Characteristics.
With the Associated Disorders and Possible Characteristics in mind, give some thought to your child’s school performance, including issues with homework, slow processing, handwriting issues, social relationships etc. In most cases for children with TS, it is the PARENT not the school who initiates an evaluation for special education or a 504 accommodation plan. Educational needs can be as simple as “extra breaks to release tics” or as complex as a Full-Time Special Education Classroom. Some of our kids are even Gifted, however they can still have specific learning disabilities. Contact our consultants to answer any questions about the school evaluation process or for a letter format to get started. To review what our consultants can do for you click here.
Not necessary in every case, but you can also pursue evaluations on your own outside of school, there are pros and cons of doing this–call a consultant for details! 1-800-990-3300
If you have questions regarding school issues or anything mentioned above and would like some assistance–call our consultants at 1-800-990-3300 and join as a member! We are here to help you help your child!
You will need to educate others regarding TS and your child’s specific tics–this will include teachers, coaches, family members, other children and the community at large. In some circumstances you may even need to explain TS and your child to doctors, therapists, counselors etc as they may not have a thorough understanding of TS even in their professional capacity. Our TS Primer is a great tool to assist with this education. To help Explain Tourette Syndrome to your child’s teacher along with common accommodations that are needed use “Teaching a Student with Tourette’s Syndrome“. (Other tools are available in our Members Only area of the website!)
There are new developments, new research opportunities, and a number of events and news articles that are updated regularly on our website, Facebook page and by email–stay informed!!
Other Pages of Interest