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Siblings response to living
with a brother or sister with a 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))
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