Feature article: The siblings of a child who has epilepsy: What do we know?
Often, the child who has epilepsy is not an only child but the health concerns that come with epileptic seizures create an imbalance in attention, time and energy spent on one child. The healthy child/ren may feel that the parents have high expectations of them, perhaps they perceive that they are required to behave, be responsible and perhaps even to help out with chores or caring for their sibling. And this occurs sort of naturally, but we need to remember that the other child/ren are still kids and some leeway for misbehavior or slip ups is needed. These siblings need the parents' time too, need to be allowed to play and even misbehave from time to time. Some Epilepsy agencies offer activity programs for siblings. In fact, the Epilepsy Services of NJ used to offer something called Sibshops but due to the Covid-19 pandemic these were paused. If enough parents call to inquire and request these Sib support groups, they will probably consider re-opening them.
Preventively, it may also be a good idea to seek out family counseling sessions even if the other siblings are not acting out. Some children may also benefit from having their own psychotherapy sessions where they can process everything that is going on internally and externally.
Epilepsy affects everyone in the family and siblings may also feel anxiety around their brother's or sister's seizures. A report from a study from a few years ago that was led by Barbara Kroner PhD, MPH (https://www.epilepsy.com/stories/siblings-children-epilepsy-feel-protective), found that siblings of a child who has epilepsy, tended to feel protective towards and sometimes even admired their sibling for facing the challenges that accompany epilepsy. In particular, Dr. Kroner stated "We found very few disapproving feelings among siblings toward their brothers and sisters with epilepsy. The negative feelings they had were more internal, showing they were sad or worried for them."
With this, we see that siblings can feel sad about what their sibling is going through, can worry about a break-through seizure or may be concerned that the sibling feels pain during a seizure. They also sometimes feel hurt when their sibling is hurt either physically or emotionally (e.g., bullying or being made to feel different).
And children, because they are human, may also sometimes feel a bit jealous or a bit resentful of the other child; this is understandable and if verbalized and heard, those feelings can be processed and alleviated. If children don't find an outlet, these emotions or reactions may appear as behavioral changes (e.g., withdrawal, acting out, decline in grades, etc.) or the child may develop somatic symptoms (e.g., head or stomach aches).
It is difficult but it is important to remember that all children need their parents while growing up; they often wish for them to be involved in their academic development, to attend school sporting, theatrical or musical events, to show up for parent teacher conferences, sometimes to pitch in as a chaperone for a school trip or bake for a class party, and so forth. Even healthy children will get sick from time to time and may encounter social or academic problems of one type of another. As tough as this might be, parents need to develop somewhat of a balance to ensure the health of all in the household. Being mindful of this may help strengthen family ties, camaraderie, and healthy growth.
Some tips to consider:
Kids should be provided with time and space to express their feelings and emotions. Sometimes, the dinner table has too much going on and is not private enough. Going for a walk, sitting at bedtime chatting for a bit, or setting aside some time on the weekend just with the sibling can be a way to provide this time and space.
During these conversations, the child might be encouraged to speak about how they understand their sibling's epilepsy. Kids sometimes have misconceptions that can be cleared up by letting them ask questions and providing information.
Depending on the child's age, they may want to be included in some of the conversations that adults have with the doctors, discussions that involve family plans and needs, and changes in the family that might occur due to their sibling's epilepsy.
Seizures can be scary even for adults. It is a good idea to teach the siblings about epilepsy and seizures, to give them enough information so that they don't feel helpless when witnessing a seizure, perhaps provide with some basic seizure response steps, maybe hang up a "What to do if a seizure happens" poster on the wall. Knowledge about how to respond to a seizure, what to do in the event of an emergency, can be very helpful.
If the child/ren appear to be having difficulties since their sibling became ill (or even if epilepsy has been a part of life since they were born), sibling support groups can be helpful. Individual therapy with a child psychologist of psychotherapist can also be useful (consult with the child's pediatrician or the epilepsy program itself to find a child therapist).
Make sure to schedule time for the other child/ren and make sure that if something is really important for the child (e.g., come to my recital that I have been practicing for the whole year, or be a chaperone for our next field trip), that this gets the attention it deserves.
We hope that by keeping some of these suggestions in mind can help all the children in the family stay healthy and well.
