Siblings & Disability

Next to parents, those who will be most affected by a child with epilepsy or any disability, are the brothers and sisters.

‘Children demand fair treatment from their parents. They want to know that they are as important to mum and dad as their brothers and sisters are. If one child appears to receive the lion’s share of the attention, the others look for ways to even the balance.’ (Kimpton, (1990), p.93.

Sharing time: Managing to spend uninterrupted time with each child is difficult but you can have good chats while ironing, washing up or travelling. Younger children may enjoy your time while ‘helping’ with chores and bedtime can be a good time for extra attention. If respite care is a possibility, using such a service is especially worthwhile to attend an important event for your other children.

Sibling conflict: This is normal and may even be a beneficial part of normal social development by forcing the participants to learn how to manage and resolve conflicts.

While no parent should tolerate physical abuse among siblings, they should be allowed to work out their conflicts. Sibling quarrels seem to resolve in 30 minutes or so when parents intervene and 30 minutes when they do not. If children are denied the right to have conflicts, there is a risk that they may express their anger in forbidden or secret ways.

The reaction of a child to a brother or sister with epilepsy depends on their stage of development but also largely on the parents’ attitude both to epilepsy and to each of the children.

Guilt: Guilt is a common response if something happens while playing (think they caused it) or if the other child has wished for something bad to happen either out of jealousy or feeling neglected compared to the child who has seizures. Sleep patterns and school performance may be affected if they feel they may be to blame and signs of depression must be watched for.

Guilt also surfaces from feelings of resentment or embarrassment and also about their own abilities and good fortune in comparison to the child with a disability. Survivor guilt (‘Why not me?’) also needs to be addressed similarly, with reassurance.

Resentment: Resentment of loss of parental attention as well as extra attention from others (people always asking about the child with the disability) plus for extra gifts or visits is common.

Being expected to do more around the house and/or to help with the physical care may be perceived as unequal treatment and excessive demanding. Offering siblings choices of how they would prefer to contribute to household responsibilities may be helpful.

Having unequal expectations seems to favour the child with epilepsy and builds resentment of unfairness. They may not fully understand the needs and limitations of the child with the disability. Conversely, parents may not realize the child’s actual capabilities and indulge in overprotection. Also, asking siblings to not upset the child and mentioning the fear of bringing on a seizure gives permission to that child to manipulate those around them.

Siblings without the disability may feel and resent subconscious pressure from parents to achieve to compensate for the limitations of the other. However, they may also be self-motivated to achieve for various reasons. Checking for signs of compulsive or neurotic behaviour is important as is analysing parental attitudes and expectations.

Embarrassment: Visible disabilities seem to provide a reason for unusual behaviour so that mild or invisible problems more commonly cause embarrassment. Siblings may feel awkward and embarrassed when new friends come to realize their brother or sister is different. Teenagers are especially affected by feeling the need to conform and be the same as everyone else.

Helping the siblings to work out a simple explanation to give to friends, preferably one that includes what the child with the disability can do, may assist with this. Meeting ignorance with information often works so education sessions at the school may help to gain acceptance and understanding.

The cause of the embarrassment should be analysed. If it is something which can be changed; - do it! If not, acknowledge the embarrassment and give space. don’t force them to take the other child with them if they don’t want to.

Let the siblings see that a certain behaviour can frustrate parents too, but that they can love the child in spite of this.

Fears: Hospital can seem like a place that spirits away mum and dad as well as a brother or sister so as well as avoiding isolation by sharing visiting between mum and dad and involving siblings, fears of contagion must also be addressed.

Children may believe that epilepsy is ‘catching’ just like the measles and they can ‘catch’ it too so open discussion is very important. Few of us understand or remember things the first time we hear them so repeated explanations and upgrading as they grow older may be necessary.

Over identification, where brothers and sisters might adopt some of the traits of the child with the disability, sometimes occurs, warranting further reassurance and attention.

Fear that they are expected to become the guardian in adult life of a sibling with a disability can build resentment so planning needs to be carried out and be open and without assumptions.

Isolation: A sibling’s disability can cause brothers and sisters to experience feelings of loss or isolation.

Heavy care giving responsibilities can also isolate siblings from their peers.

Another aspect of isolation from peers is that siblings rarely know of others in similar situations. Sibling support groups or any peer support may be scarce.

When feeling isolated from parental attention (feeling lonely), the help of a favourite relative or friend could be enlisted.

Feeling isolated from the process by feeling uninvolved, uninformed and confused can also be a problem which can be addressed by discussing the implications openly.

‘While there is always an impact on siblings whose brother or sister has a disability, studies have shown that, if handled appropriately, the impact is positive. Brothers and sisters can become stronger, more sympathetic, more empathetic and more caring.’ (Freeman et al, 2002, p.302).

Resources: Education and training officers from Epilepsy Queensland are available to conduct education sessions at schools and work places.

A story book, Mecat Says, made available to Epilepsy Queensland by the author, Catriona Russell, is another valuable resource for young children. It features sibling response to epilepsy. Just call us on 3435 5000 o 1300 852 853.

References:

Cuskelly, M., (1996) ‘Sibling Response to living with a brother or sister with a disability’ in the Flame, August, 1996, Epilepsy Queensland Inc., Brisbane .

Freeman, J.M., Vining, E.P., Pillas. D.J., (2002,) Seizures and Epilepsy in Childhood: A Guide, John Hopkins University Press, Baltimore.

Kimpton, D., (1990), A Special Child in the Family, Sheldon Press, London .

Meyer, D.J. and Vadsy, P.F., (1994) Sibshops, Paul H. Brookes Publishing, Baltimore .

‘Siblings, because of their shared experiences, know each other in ways no one else will ever know them.’ (Myer and Vadsy 1994, p.7)