Summary: Having a handicapped
child may be embarrassing for a parent or relation to mix freely in society. It
is equally embarrassing for a third person to interact with a disabled person or
parent/relation, for fear of offending them with a careless word or gesture.
Here are a few helpful guidelines for both parties. Last updated December 15,
2009
A normal individual always finds it difficult to decide on proper behavior
with a disabled person, especially a person with whom there is an emotional
attachment. It could be a sibling, relation, friend or colleague. Here are a few
practical and down-to-earth behavioral guidelines for persons, or relations and
friends of persons, with cerebral palsy, autism, mental retardation or similar
disabilities.
Be mature enough to accept the
medical diagnosis. Doctors are also human beings, family members themselves,
with kids of their own. It is just as difficult for them to pronounce a
diagnosis of CP as it is for you to listen to. You can be very sure that
they have investigated every other possibility before they, with a reluctant
heart, accept that the child brought to them has CP. I know, because I am
one such doctor.
Be mature enough to accept the
distance that relatives will keep from you. It is not because they are
resentful, but because they are afraid of hurting you by an insensitive act
on their part. Ask them to accept facts and accept the situation, just as
you have done.
Accept that the disability
will not diminish with age, but, may actually worsen, especially the
spasticity and deformities.
Don't look for miracles.
Miracles are miracles because they happen once in a blue moon, and blue
moons do not happen except once in a blue moon. If someone found a cure for
CP, then you will hear of it with the announcement of the Nobel Prize for
that year.
Join a mutual support center
or club with other affected persons and families. The opportunity to
exchange information and to discuss feelings with affected persons and
relatives often throws up remedies, like what to do for a household problem,
where free medical help is available, the merits of a particular remedy,
etc.
A child with CP is the joint collaborative
product of a man and a woman. The husband must not blame the wife for
bearing a CP child, as is often the case. Instead, they must share the
opportunities and tribulations.
Relatives must maintain
the same normal relationship with the family to make them feel they that
they belong. The disabled child must be as well accepted into
the family fold as any other child, without undue pity, and only a helping
hand when absolutely necessary. The greatest point of irritation is the look
of pity that affected families receive from well-meaning persons.
Don't try to put on a mask of
empathy and good feeling when dealing with affected families. Be honest
about your likes and dislikes; it is tolerated much better. It is child's
play even for a CP child to know when a feeling expressed is false.
Listen and be seen to be
listening. Often, just being there when an affected parent is unburdening
himself/herself, may be the best gift you can give them.
Affected parents often go into
a shell, and feel embarrassed to ask for help. If you want to help, then be
prepared to draw them out, maybe over a cup of tea or coffee.
Make allowances for the extra
time required for affected families to get things done, like getting ready
for the party.
If you are genuinely
interested in helping the affected child, accompany the child to his/her
next therapy or training session. There you will see other such children and
how they are fighting their disabilities. It will give you a new insight
about their unique world of struggle and achievement.
Offer to occasionally help out
with the shopping, running errands, childcare so that the parents can also
go out to see a play or to a quiet dinner once in a while.
Be there in an emergency. Even
moral support and empathy are invaluable, even if you are not in a position
to offer financial help.
Ask the parents, "Tell
me, what can I do to help", and mean it when you say it.
It is an unfortunate fact that
most doctors know less about CP than what the affected parent learns by
experience within half a dozen years.
Visit specific CP
institutions/centers to get proper guidance. Do not be shy to ask even the
simplest of things, like what panty to use, since the child wets it faster
that you can change it. The staff are used to answering such questions. If
they aren't, change your center.
The staff at these centers
have nothing against your child. Do not fight their suggestions, even if
they seem trivial or unnecessary now. They know better.
Managing a CP child is an
endless routine of exercises, and more exercises, to keep muscles pliable,
strong and flexible, and prevent fixed spastic deformities. Be prepared for
it and never neglect it, no matter how advanced the disability. These
children do not have short life span, and it is more difficult to carry them
about if they become more stiff.
Remember, that a child learns
to crawl before learning to walk. Do not force your child to walk just
because some other normal sibling did so at that age. First, make him learn
to crawl well, then graduate him to walk, irrespective of the time each
stage takes.
Start a trust fund to care for
your child when you are no more. Arrange with an institution to keep the
child after you. Don't wait for your death to keep the child there. The
child must get used to spending life there. Do it in stages, with a day once
a week in that place, so that when you are no more, the shock of loosing you
(remember, the child is intelligent), is not compounded by too drastic a
change in life environment, when the child is shifted from your loving home
to an institution for ever.
If the child is not grossly
disabled, teach him/her a vocation. Look around. You will be surprised at
the things some people are doing to earn their living. Gone are the days
when a person had to be an engineer, businessman, doctor, lawyer, etc., to
earn a living. Look to the East, especially India, China and South Eastern
nations. Many handicrafts can be made even CP children, as are indeed being
done at UDAAN.
Teaching such skills may not only be a source of revenue, but also do
wonders for the mental rehabilitation and fight frustration in the child's
mind.
Many CP patients are prone to
epilepsy. Such fits will not always be what a lay person imagines it to be.
It may just be a sudden rolling of the eyes, or an unusual vacant stare for
a few minutes, or a full blown convulsive fit at the other extreme. Do not
get panicky. Just make the child lie down flat on the floor, move things
away if they can hurt the child, and keep the child on the side. This is to
ensure that if there is any vomiting, then it will come out easily through
the mouth without entering the lungs.
Spare a thought for the
brothers and sisters. So many times they have not gone for a party or a
picnic because someone just had to stay behind to look after the CP child.
The normal siblings deserve
extra love and empathy for what they also go through in their friend circle,
by having a disabled brother/sister, instead of a normal one like their
friends.
They will see their parents
spending many times more time with their disabled CP brother/sister, which
can lead to family discord and frustration, unless handled properly with
frankness, openness and sympathy.
It is extremely rare for a
couple to have more than one CP disabled child. Just because the one child
has CP need not mean that the parents should not try for another child. If
necessary, consult a geneticist.
What is society going to do
for you ? Forget it. Arrange your own societies and fight for your own place
on society. Only a crying child gets milk. Dont expect society to help you
unless you holler loud enough, and then some.
What about after you : who
will look after the child ? Hardly anyone, except a sympathetic relation.
Make your own society of
affected parents, and make a home for "after you". If a group
of parents in Delhi (India)
can try for it, why not you wherever you are ?
Every one loves a child, even
a CP child (well all right, sometimes). But, such cutie pies also grow up,
with nothing for them in society. Only an association of affected parents,
or a Club for CP persons will help if at all.
The help that a friend can
give, even a relative cannot. Ask about the disability, learn, and accept it
as casually as that mole on your friends arm.
Nothing helps an affected
parent more than to have a friend who is neither awed by his misfortune nor
sympathetic about it, but accepts it as just another fact of life.
Be tolerant to your friend as
he/she misses out on another party or picnic because the child needed help
at home.
Don't
boast about your normal child's progress in front of an affected parent.
Don't persuade him to try that
magic remedy that they are all taking about, without any idea whatsoever
whether "they" exist or not, and whether "they" are
competent to pass judgment or not.
Be a background pillar of
strength and support when your friend badly needs it, and melt away when the
need is over.
Keep in regular touch.
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