This article has
been reproduced from www.familyonwards.com with the kind
permission of the author Jill Curtis.
For families of children with
special needs
As
a parent of a child with a disability or with
special needs you will be only too aware of all
the challenges you encounter when you try to get
the best help you can for your child.
Sadly the list of problems faced by so
many children, and their families, never seems to
end. Each disability brings with it its own
special concerns, but there are many issues which
parents share in common.
There is understandably the shock and
disbelief on learning that your child is in
anyway disadvantaged or handicapped. It is very
hard to accept that this is so. And quite usual
at the beginning for parents to block from their
thoughts the fact that their child is going to
need extra help and will have to be cared for in
a special way, perhaps for life. It is as if
denial of the problem will make it go away. If
only that were so.
The gradual acceptance of the situation
is very painful. You may still be agonizing over
the question of whether you or your partner are
somehow to blame for your child’s condition.
All parents go through this kind of anguish.
There is a desperate desire to blame somebody.
You may already have felt the deep anger
experienced by almost every mother or father in
this situation that it should be your
child who will have to struggle with a physical,
an emotional, or a mental disability. You will be
know the sickening fear of wondering if you can
cope with what you are hearing.
Practically all families wish to do the
best for their child, often against tremendous
odds. And top of the list for most parents must
be to find the best healthcare available. But
parents so often run up against a brick wall when
trying to get a diagnosis about what is happening
to their child. Some physical handicaps are
recognized from birth, some children develop an
illness which produces them, while some
disabilities are more insidious and gradually
become apparent as the child gets older and
reaches different developmental milestones. It
can often be difficult at the beginning to put
your finger on just what is worrying you about
your child. It can be even harder to know where
to turn for guidance or information, with the
result that you feel totally lost, and quite
alone with your distress.
We all like to think that in our ‘caring
society’ today all the help which is needed
is on offer. Unhappily that is not usually the
experience of mothers and fathers who desperately
seek the advice and support they need to help
their child in the circumstances I am discussing.
What is the best way to proceed? The
first thing is to get as much information as you
can about the specific condition which has
aroused your concern. Today with the Internet
there is more detailed information available to
us than previously. Once you can arm yourself
with some knowledge about your child’s needs
you are in a stronger position to stand firm
against the red tape and possible indifference
you may meet on the road ahead.
The more facts you have at your
disposal, the more confidence you will have to
speak up for your child. This is important from
day one, and will become even more so when there
are battles to be fought about education and
other help required such as physiotherapy,
occupational therapy, speech and language therapy
or psychotherapy. Lack of funds is often given as
an excuse why some services are not available.
Don’t take this lying down. Ask questions,
and go on asking them.
Guidance about how to handle certain
behavioural difficulties may be needed. If a
child has to deal with the frustrations of not
being able to communicate or do things which
other children are able to, this can often burst
out in uncontrollable rage.
You may need help in getting the right
equipment, finding ways of entertaining your baby
or child, and even in gaining some respite for
yourself. Don’t fall into the way of
thinking that only you, and you alone, can care
for your child. A worn-out parent will be little
help, and especially if you have other children
to care for it must be kept in mind that they
need time with their mum or dad too. So get
assistance before you crack under the pressure.
Remember, too, that having a child with
special needs can put an additional strain on any
marriage, so try your hardest to get out from the
home together for a little while, even if only
for the occasional meal. Make sure you talk to
each other about your fears and worries. Talk to
other people too. Talk to the neighbours, talk to
the local school and any local groups. Set up a
rota of family or friends who will give you a
short break. Look for local charities and
organizations who will be only too glad to find
people to help you and your child. This will have
the added advantage that it will gain local
awareness for a particular disability. Ask at the
local schools or colleges if some of the older
pupils will come in and play with your child for
a while.
Try to link up with an organization
which has specialist information about your child’s
disability. You will find the tips they can give
you will be invaluable. Make sure you know your
child’s rights about education, and search
out information about Special Needs’
playgrounds. Chat online to other parents who
share your concerns, and learn from other parents
who have already fought some of the battles which
you foresee ahead. One parent said to me this
week ‘My advice for new parents? Tell them
never take "no" for an answer’. So
find your voice and make yourself heard - whether
it is to a medical, or educational professional.
Your child deserves nothing less.
On the Internet you will log onto
information about all kinds of disabilities, as
well as getting backup for yourself as a parent,
so click onto any support group you can.
© Jill Curtis 2002
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