Like any other medical condition or life development, Tourette Syndrome can have a significant impact on family life. Learning as much as you can about TS will help you and your family adapt. It is good to understand how your family member with TS is experiencing the condition. Are the tics very visible and interfering? Or is it that attention issues (leading to ADHD) or OCD are most interfering? The better you understand what is impacting your family, the easier it will be to address the underlying issue successfully.
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Impact of Tourette on Families
Family emotions and ever-present family dynamics will come into play. Parents may feel determined to forge ahead and build the best life possible for their children. Others may feel profound guilt, wondering what they did, or whether their genes caused their child to have TS. Siblings may express resentment that their brother or sister with TS is getting so much attention.
Parents in this situation come to learn that every family deals with its own set of unique challenges. They learn to accept and love the child they have and often learn that what was originally seen as a problem, is actually a strength. For example, in the best instance, as the child with TS grows up, parents can encourage interests, dreams and the development of individual skills (such as singing, dancing, computers or sports) and encourage positive aspects of the emerging personality, such as kindness or understanding, a sense of humor, or other talents.
Siblings can be valued for supporting their brother or sister, while similarly being encouraged by the family. By doing so they can focus on helping their child become the best person he or she can be, and to pursue interests and dreams, just like any other kid. TS is a medical diagnosis, not a character trait, and is only one aspect of their child’s life.
TS in the Classroom - Helpful Resources
Tourette and Tic Disorders can present challenges and opportunities in the class room. Parents often turn to us asking, “Where do we begin when we talk to our child’s school?” Here are some quick links to helpful resources that will give you the basic information you need. There are many more articles and videos in our searchable Resource Library that will help you. If you would like to contact the Tourette Association direction for further guidance, please fill out our Contact Us Form and a staff member from our Information & Referral team will contact you.
Tics in the Classroom: An Educators Guide (Print out to hand to your child’s teachers)
Support for Caregivers
As a caregiver, it is as important to know when you are running out of patience as much as knowing you are fighting hard to support your child. You do not have to be perfect: it is good enough to be good enough! You may have to arrange a break from time-to-time, to clear your head, to recharge, to get a change of routine and environment, and to get a refreshed perspective on whatever caregiving challenge you may be facing at any given time.
Taking a break for these reasons will help you function better in your caregiver role. It will not mean you are being irresponsible. See if another trusted family member or friend can attend to your child in confidence and safety while you take a few hours for yourself. Your child and your supporters may enjoy each other while you restore. With some forethought, taking a breath can be good for everybody. Remember, being a parent of any child is a marathon, not a sprint. Pacing yourself and take a long-term view are essential. Overburdening yourself or getting “burnt-out” doesn’t help anyone.
Your local Tourette Association chapter may provide programs through which you can meet other families and caregivers, exchange information and ideas, make new friendships, and learn as well as teach others. The TS community is a welcoming one. Additionally, you may contact the TA Information and Referral service for more encouragement and ideas about caregiving.
Tips for Siblings and Extended Family
Although brothers and sisters can become lifelong friends, as in any family, rivalries are bound to come up. When TS is present it can place demands on every family member at times. Acceptance is, as always, an important part of managing. Helping your family recognize the realities of a member with TS can lead to everybody knowing what is needed and what role they can learn to play to support their sister or brother with the condition.
In some families, the brothers or sisters may go ahead and tease their sibling with TS a whole lot, just as in any other family. If there is real resentment among siblings, that likely will require family and possibly professional attention.
However, there are siblings that have “stepped up” to behave responsibly, accept their ticking brother or sister, and support them as strong family members. We know of one family who reported that siblings looked out for their brother, but NEVER teased him for having TS. Not once! It is important that all of the siblings play as positive role as possible as they grow up and show their love and support in the natural ways of kids in families. The siblings can take pride in having been respectful and supportive, and the child with TS focuses on the challenges and the fun of growing up in a family, not on having a neurodevelopmental condition.
Of course learning to understand and live with Tourette Syndrome is not easy for any family, but it’s something to strive for, and offers parents, brothers, sisters, and those with TS wonderful opportunities for closeness and growth.
The Tourette Association is always ready to support you and your family with whatever challenge you may be facing. We encourage you to contact us.