parenting a differently abled child

54 Pages·2009·0.4 MB·English

INDEX
TOPICS Page no
(cid:1)
Introduction to parenting a differently …… 3
abled child
(cid:1)
Need for detailed assessment of the …… 5
child
(cid:1)
Acceptance of differently abled child …… 10
(cid:1)
Disabled or Differently Abled& …… 12
Language of Disability

(cid:1)
Parents Involvement in Child’s …… 18
school and treatment
(cid:1)
Coping Up with stress of parenting …… 24
(cid:1)
Working mother and Differently …… 29
Abled Child
(cid:1)
Adjusting Life with Differently …… 32
Abled Child
(cid:1)
Relative or Friend's Perspectives on …… 37
Parents of Differently Abled Child
(cid:1)
Corporal Punishment …… 39

(cid:1)
Positive Parenting …… 45

(cid:1)
Parents Perspective …… 49

(cid:1)
Parents Feedback …… 55

1
Introduction
To
Parenting
A
Differently
Abled
Child

2
PARENTING A DIFFERENTLY ABLED CHILD

Recently a mother of a disabled/differently abled child asked me “How difficult is
it to cope up being a parent of a disabled child?” for a minute I was lost in my
thoughts really how difficult is it to be parent of a disabled child??

After nine months of anxiety, patience, anticipation and dreaming, when
your child is born with some disability, it is but natural for you to feel
disappointed, frustrated and, maybe, even a little cheated. This was
perhaps the last thing you had expected or bargained for.

Parents crave for a beautiful child, a child they could love, care for and be proud
of. You too must have had your dreams, which may have been shattered by the
birth of a disabled/differently abled child. Your emotions and disappointments are
understandably overwhelming, but remember that the child is your own. He is a
special gift from God conceived by love. The child needs your affection,
tenderness and care. He has a future and he needs you to mould it for him. The
child has to grow up and face the ups and downs of the competitive world. You
have to ensure that he can do it on his own because you might not be there for
him forever. Hence the sooner you put your disappointments and frustrations
behind you, the better it is for both your child and for you. To begin with, start
loving your child. Let the child know that you care for him. Hold the child close to
your body; let your parental instincts flow. You will soon find the child responding.
Love and care go a long way in giving your child emotional strength and
confidence.

. A disability is God given, it is natural, and it becomes a handicap only
when seen in a social context. As parents your task is to work towards
minimizing the situations where the disability becomes a handicap. It is critical to
recognize the limitations brought upon your child by a disability. The child must
then be nurtured to play the game of life within his limitations. Further, the child
must learn to accept these limitations that are special to him, as a part of life.
Making your child a champion is your challenge. Bringing up your
disabled/differently abled child should not be seen as a sacrifice on your part, it
should be taken as an expression of your love and commitment. See it as an
opportunity that God has given you and not as an ordeal. It should not be seen
as a burden you are carrying, it should be seen as a mission you have set out to
accomplish.

3
Need
For
Detailed Assessment
Of The
Child

4
Start Here:
Raising Differently abled Kids First Step
ADD, ADHD, ODD, OCD, bipolar, autism, spinal bifida, psychosocial, sensory
integration...What does it all mean? Start here to begin making sense out of it all. You
know in your heart that something with your child is just not right, or else things are more
than obvious. What are you going to do now?
Start with your pediatrician. They know you, your child and what is normal and what you
need to investigate further. Your pediatrician should be able to refer you to specialists, if
needed.
Your pediatrician can help determine what you are dealing with specifically, or at the
very least, help figure out what general category is in question: physical disability,
emotional disability, or developmental disability.
Once you meet the doctors and specialist who will help in making the clinical picture of
your child clear try and assess the extent of your child’s disability and also explore the
possibility of any form of correction that might mitigate the situation. If medical science
can help, nothing like it but once the doctors tell you that no correction is possible, then
you need to accept the reality and focus on how best you can bring up your child so that

he may lead as complete and as independent a life as possible.
You do not have to blindly accept everything you are told - especially if it just doesn't
seem right to you. If you are just not sure your primary care physician is understanding or
is just not "getting it", take your child to another doctor, or a specialist for another
opinion. Remember there is always a need for detailed assessment so that the complete
medical profile of your child is in front of you. You know the reason of why it happened,
duration of the disability and cure or treatment of the disability
Learn as much as you can about your child's disability and the system where you live and
receive services. Knowledge is power, and in this case, the more you know, the better
you are able to advocate and help your child. Read books related to your child’s
disability, meet parents of children with similar problems. Collect all the information you
can on the subject. Meet as many people as you can who have a child with the same
problem as yours. Find out how they have handled life. You could well meet people who
have failed to deal with the problem, but this should not dampen your spirit. On the other
hand, look at it as a learning experience and treat it as a preview to the difficulties that lie
ahead

5
EARLY INTERVENTION

Now since you know that your child is different than others it becomes very important for
you to know why? What exactly went wrong? What is the cause?

It is not possible for any clinician to look at the clinical signs and symptoms and predict
the exact cause of the disability a child is having. Hence we need certain investigations
which are mandatory when we have a disabled child. Parents are sometimes misguided
and told that they need not get those tests done and spend so much money but the fact
remains that it is very important to do so and hence doctors stress on “Early Intervention”

DEFINATION
Early Intervention is professionals working in partnership with parents and families of
children with special needs, to support their children’s growth, development, and
learning. It starts from day one till three years of age.

The investigations asked by your Neurologist help you to know the exact cause and
extent of damage caused to the brain tissue. It gives you the exact location of the damage
caused. This in turn helps the team of doctors working with your child to design and plan
their treatment. The commonly asked investigations are as follow

EEG: - (Electroencephalogram)
EEG means the activity of the CNS (Central Nervous System) .It has been
discovered 60 years ago, but advances in computer technologies are revolutionizing the
ways in which EEG’s are used.
(cid:1) EEG are easily obtained, non invasive and inexpensive
(cid:1) It gives both qualitative and quantitative information
(cid:1) Most useful in gray matter injuries
(cid:1) Commonly done in cases of Cerebral Palsy and sensory processing problems.

CT SCAN: - (Computed Tomography)
(cid:1) Introduced in 1973 CT scans are successful in identifying hematomas,Ventricular
enlargement and atrophy
(cid:1) Comparisons of CT and MRI confirm that CT is relatively insensitive to many of
the lesions present after trauma.
(cid:1) Professional and family members should be warned that a lack of significant
abnormalities on CT scan does not rule out the presence of extensive brain
damage.

MRI: - (Magnetic Resonance Imaging)
Introduced in the early 1980’s MRI is more sensitive than CT to lesions after brain injury,
particularly to nonhemmorrhagic lesions

Patients with normal CT scans may have evidence of abnormality on MRI

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BERA:-
Assessment of normal functioning of the auditory system

OPTHALMOLOGY:-
Assessment of normal functioning of the visual system
In many cases though we feel that the child can see normally see but there might be a
damage in any of the quadrant, eyeball or entire visual pathway which hampers the
child’s progress
There are many times after assessment it has helped in improving the vision by giving
exercise for eyes or improving the minimal squint by giving corrective glasses

EVALUATIONS (PHYSIOTHERAPY, OCCUPATIONAL THERAPY, SPEECH
THERAPY AND REMEDIAL EDUCATION)
It is very important to get your child evaluate in these three areas before starting the
treatment as a parent you should know what are the limitations your child is facing
Physically, Occupationally, Speech wise and while studying. What can be the short term
goals and long term goals for your child. The parent and therapist should discuss these
goals review after every six months so you can keep a track of your child’s development.
Written evaluations are always important so we have everything in front of us and no
point is skipped. Even if the therapist gets changed another therapist can read the
evaluations and carry the same goal.

TESTS FOR DIAGNOSIS:-
Autism,ADHD,ADD,Learning Disability and so on we are all familiar with these words
now the most important point here is there are various test which are now easily available
Your doctor/Therapist should administer these tests on your child and then come to a
diagnosis, mere looking at the signs and symptoms and coming to a diagnose shows there
expertise but can be sometimes misleading to confirm it is always better to administer
these tests and then arrive to the conclusion.

IQ/DQ TEST:-
IQ is Intelligent quotient Test and DQ is Developmental Quotient both these test are been
told to administer on your child. IQ test should be generally done after 6 years of age as
the child has developed properly in all areas by this time. DQ test can be administered
early. However if the child is having disability especially physical one then the score is
naturally going to go down as there are many things which your child cant do due to their
disability and hence the score goes down and then we get the TERM AS “SEVERE
MENTAL RETARDATION” or “MODERATE MENTAL RETARDATION”
.These words are enough to change the attitude towards our child. Don’t get carried over
by these words as always remember your child is understanding and communicating in
his own way which is slightly different from others and hence the scores differ. In India
now the words such as “Retardation” is banned and words like challenged,
impairment are used. So we as a parent should not allow our children to be called as
Retard or disabled

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Let’s make a flow chart and sum it up like this

DISABLED/DIFFERENTLY ABLED CHILD

PEDIATRICIAN

NEUROLOGIST

MRI ,EEG,BERA,VISUAL CHECKUP/IQ/DQ

PHYSIO, OCCUPATIONAL, SPEECH THERAPY
REMEDIAL EDUCATION

ORTHOTIST:-TO GET ADAPTIVE EQUIPMENT

If you realize that your child is little different from others please do not ignore visit your
pediatrician as fast as possible. Please don’t forget “A STICH IN TIME SAVES NINE”
so don’t waste time and wait for miracles to happen. Time is money

Dr Karuna Nikam/Singh
(BPTH,.INR,MLAP)
Joints N Motion
Godhbunder Road
Thane
[email protected]
9833565456

8
ACCEPTANCE
OF
DIFFERENTLY
ABLED
CHILD

9
When Your Child has a Disability
Most parents-to-be have a vision of their new baby – what the child will be like – how
life will be once the baby is born. Sometimes things don’t work out as planned. When
parents receive the news that their Child has a disability; it generally comes as a shock.
Some people are more or less prepared, like parents who know in advance that their child
has Down syndrome, or parents who are adopting special- needs children. But in general,
having a disabled/differently abled child was not part of the original vision of the family
unit.
Parents’ first reaction is often shock and dismay. There may even be denial: could the
doctor have made a mistake? Some seek a second opinion, or even a third. After all, this
is not how things were supposed
To go! Parents who have just been told that their child has a disability often say they feel
like they’ve had the wind knocked out of them. The shock can produce a wide range of
feelings:

(cid:1) Grief over the loss of the child they thought they had.

(cid:1) Anger: “How can this be happen to us?”

(cid:1) Guilt: “Did I do something during the pregnancy?”

(cid:1) Hopelessness: “What will life be like now?”
It is also normal to look for someone or something to blame; this some-times causes great
stress between the parents. With time comes acceptance At some point, you will begin
to feel acceptance. You will realize the disability is part of now part of your life, and that
your child is still the same beloved son or daughter you’ve longed for and loved since
birth. At this point, you can stop looking for blame and begin looking forward. Arriving
at this stage can take a lot of hard work and introspection. Some-times counseling for one
or both partners is very helpful.
(cid:1) Knowledge is power
(cid:1) Once you have accepted that your child has a disability, it is time to educate yourself!
Concrete information can counteract the “what if” questions you may have. There are
many ways a family can find information about most of childhood disabilities that
exist today.

(cid:1) Your pediatrician’s office may have pamphlets and phone numbers to start you on
your journey of education and discovery.

(cid:1) Look in the local phone book or online to find the association or support group that
applies to your child’s disability.

(cid:1) Search for resources at your local library or bookstore. Make sure you choose
recently published books by reputable publishers. Information changes quickly, and
it’s important to stay up to date.
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