How Tourette in the Family Affects Siblings

Having a child with TS affects the whole family: the child, each parent, the marriage, and the siblings. The effect on the siblings is often forgotten or overlooked. I will offer an overview of  the impact that having a child with TS may have on their brothers and sisters, and what you as parents can do about it.

It is generally acknowledged that having a sibling with some kind of disability affects the social and emotional development of the “normal” brothers and sisters. Many adults have retrospectively reported having a loving and special relationship with their disabled siblings, but many children and adolescents have complex and ambivalent feelings about their siblings. This is particularly true if the children are the same sex and close in age, or the child without the problem is the eldest and female, or if the parents have trouble accepting and openly communicating about the disability.

The practical reality is that children with TS often require more time and attention from us. They are taken to more doctor’s appointments, therapists, evaluators and tutors. We spend more time helping them with homework, communicating with their teachers, and discussing them with our spouse. It is natural for all children to compete for their parents’ love and attention, and to the non-TS child, the TS child seems to be ‘winning.’

As parents, we may also unwittingly expect more from the non-TS child. We may expect appropriate behavior in all settings, homework independently completed, better grades at school, and a temper always under control.  Because they are more able or competent, the non-TS sibling is given the more complicated household chores or assigned responsibilities that make the family’s life easier.  Even if we are careful not to burden the siblings with these expectations, siblings may impose it on themselves. They may take on the caretaker, protective role, feeling responsible to protect the TS child from bullies or from rejection. While this is commendable, it also takes its toll.

Siblings may also feel guilty for being normal. “Why him and not me?” they may ask themselves.  They may also downplay their successes so as not to make the TS child feel bad, especially if the non-TS child is the younger one, because that upsets the ‘natural order’ of things. Finally, they may often be embarrassed in social situations by their TS sibling.

The most important thing parents can do is keep the lines of communication open, and include siblings in discussions of this sensitive topic. We often think about the need for peer education at school, and we know that explaining TS to teachers and classmates and demystifying our child’s behaviors decreases bullying and increases acceptance.  We often forget that we need to do this within our own families as well.