CEREBRAL PALSY: 


LIVING ON THE OTHER SIDE

Joysha Agarwal
National Institute of Fashion Technology
 CONTENTS

Abstract 3
Introduction 4
Understanding Cerebral Palsy 4
Additional struggles 4
Parental Resolution 5
Routine as a caregiver 5
Social stigmas 6
Monetary burden 7
Educational barriers 7
Some steps by the government 8
Conclusion 9
Abstract
Your life is not always just moulded by you, but the people and circumstances around give
shape to it. Following the same pattern is the story of Neha didi, whose life is less of her
own and devoted to her husband and daughter. Raising a child with cerebral palsy is only
a task of a strong human. Along the narration of Neha didi, this research discusses the
struggles which come along with this chronic disease. The condition affects the family as
much as it affects the patient. Parents invest huge amounts of energy in child rearing, but
at the same time enjoy their parenting role. When faced with caring for a child with
developmental disability, families confront a number of additional challenges (emotional,
physical, and financial) over a long period of time. Some of the main struggles that the
respondent talked about are the educational support, monetary burden, social attitudes
and parental resolution.
Introduction
My respondent, Neha didi, is a lady in her early 30s, residing in Noida. Originally she hails
from the town of Sawai Madhopur in Rajasthan, also known for the Ranthambore National
Park. She was highly inspired by both her parents. Just like her father, she studied to
become an engineer, but later in her life found bliss in teaching, just like her mother. Both
her parents being government employees were sometimes posted in different cities, and
she was the one to take care of her younger sister. Hence, from a very young age, she
had been a responsible girl, taking charge of situations. Neha didi was one of those kids,
who could be spotted in every scene of trouble, yet score good marks. She claims to have
had the best memories from her childhood, but she brings out ‘if only my daughter could
enjoy the same way’ on various instances. Listening to her various subtle mentions of her
daughter, I figured her life must be pretty much devoted to her daughter now. My
assumption turned out to be true when she mentioned “Since the time we have found out
about her Cerebral Palsy…”

Understanding Cerebral Palsy

Cerebral palsy is the most common physical disability in childhood. It is a general term for
a group of conditions caused by non-progressive disturbances to the developing brain
during pregnancy or infancy.Cerebral palsy cannot be cured, but some of the symptoms
can be managed and most of the health complications can be prevented with advanced
planning. The quality of life of children and adults with cerebral palsy can be substantially
improved with the right medical interventions and attentive home care. For most people
living with CP the cause is unknown. Whilst cerebral palsy is not a progressive condition,
changes may occur over time. As the child grows and uses their muscles more, their
muscles may become tighter. Cerebral palsy varies greatly in how it affects the individual
due to varying types of CP, severity of movement disorder, and related functional abilities
and limitations. CP may be accompanied by other impairments such as disturbances of
sensation, communication issues, epilepsy, visual, hearing and behavioural issues. The
condition has far reaching consequences to the individual, family, and the community in
the spheres of socio-economic, emotional and quality of life to large number of the affected
population is indeed serious.

After the mention of the big neurological condition, I became cautious about the words I
used so as not to offend her and the condition of her daughter. She might have noticed my
struggle as she continued, “ I want to encourage conversation, yet I wonder how many
people avoid eye contact and conversation because they worry about not finding the
words that won’t cause offense to our family.”

Additional struggles
The birth of a child represents a major life event for the entire family and calls for acquiring
new and modifying the existing family roles and habits. These changes occur in all
families, including those to which a child with developmental difficulties is born. Along with
the usual parenting demands, families raising a child with a developmental disability are
faced with a number of additional, specific tasks deriving from the child’s condition.
Having in mind that every family is a dynamic system, difficulties experienced by one
family member inevitably affect all other members, so that everyone has to adjust to new
challenges and learn how to cope with adversity.

And here, Neha didi didn’t have to just take care of the daughter who was living with
cerebral palsy, but also her husband. Her husband seemed pretty physically fit before
marriage and she wasn’t even told of any abnormalities or injuries that he had. But after a
couple of years of marriage, the effects of an old accident started to show. Apparently the
man had injured himself in an accident in his bachelor life, which had affected his left limb
badly. Before marriage, my respondent was kept in the dark about this. But when she
discovered the change in her husband and the increasing limping, she realised she had
been cheated. Although Neha didi had grown pretty fond of her husband, the fact that she
had been kept in dark about such a significant detail still hurts her.
“I love, I really do. He has shown me the world with a lens, I had never before. Physically,
he might not be the fittest, but emotionally he has been the strongest.” She appreciates
her husband for the man he is, even though the family had played a gimmick for the
marriage. For her, he has been emotionally available and let her live on her own terms.
She says she is not afraid to take up challenges, or walk the extra mile in the relationship,
for them to be a happy family.

Parental Resolution
Parental resolution of diagnosis represents coming to terms with and accepting the
diagnosis of a serious condition in their child. The current study tested the hypothesis that
mothers who are unresolved to their child’s diagnosis would have considerably higher
levels of risk factors, compared to resolved mothers. Parents can experience
psychological stress and disappointment when their child fails to fulfill their hopes of
having a healthy offspring, or a ‘‘perfect child’’. Thus, the stress involved in rearing a child
with developmental disability can be understood as a combination of a greater need for
care of a child with atypical development and the emotional reactions to the existence of
disability within the family. The concept of resolution is based largely on the attachment
theory and research, and represents a process during which parents change their working
models of the anticipated perfect child into conceptions that are more aligned with the
reality, representing a child with specific abilities and limitations. If parents are able to
integrate the conflicting inner working models of the child, those present before and after
becoming aware of the diagnosis, into a new, realistic model, and if they are able to direct
their attention to present and future realities, they will find it easier to resolve their grief
reactions. The-phrase ‘‘grieving the loss of the perfect child’’ is used to describe the
process during which parents change their models of a perfect child into those that
represent a child with a chronic health condition. It is important to emphasize that
resolution does not imply a complete cessation of grieving, allowing for grief to become
reactivated. Therefore, the cyclic process of grieving in parents of children with
developmental disabilities has been termed chronic sorrow.

Routine as a caregiver
Neha didi had given birth to a beautiful baby girl on 30 May, 2014. She was a premature
baby, weighing less than the average weight of newborn babies. Initially, everything was
normal and the entire family was celebrating the arrival of the baby. The parents noticed
that the growth of the baby was comparatively slower than other children and eventually it
started to worry them. “She had turned a year old but still couldn’t sit straight or even
crawl, we had to do something.” The child underwent MRI scan and then it was discovered
that she had to live with cerebral palsy. Due to her condition, she has an IQ of a one year
old even at the age of five.
Mothers are the primary caregivers, especially in families raising a child with a disability,
and are more involved in medical care and communication with medical staff. Neha didi
had to extend her maternity leave to resignation, so that she could give more time to the
wellbeing of her daughter. Now her daily routine completely revolves around her child. She
wakes up first in the house to complete her chores just in time to see off her husband to
work. As soon it is just the mother and daughter alone at home, she helps the child with
some basic exercise practices. Frequent and regular physical activity is an effective way to
maximize motor control, prevent muscle contractures (extreme stiffness of muscles), and
maintain a healthy weight. Later the child is taken to the therapy centre where a trainer
proceeds with the physiotherapy and occupational therapy. Most people with cerebral
palsy can benefit from several types of specialized therapeutic techniques. These
interactive therapeutic techniques require direction and guidance from a professional
therapist with experience in cerebral palsy rehabilitation. Therapy may take place at a
rehabilitation facility with specialized equipment or at home. The child is allowed to rest
after being fed. She takes her daughter to the park every evening, hoping for a positive
interaction with other kids. After dinner, she again helps her child in some basic learning of
indications. “Since she cannot speak words and hasn’t absorbed at a regular pace, I need
to teach her something so that i can interpret her reactions to different things. I have to
make her capable enough to at least let me know what she wants or how she feels.” This
is how the entire day starts and ends for a mother of a child with special needs. Even after
holding a masters degree in engineering, she is home bound due to her ‘gudiya’. All her
movements are in a way controlled according to the child’s will. But she doesn’t take it as a
restriction, “It is my choice, I want to provide for her now so that she can develop faster. I
will go to every length that I can to help her be happy the way she is.”

Social stigmas
“I remember Neha as that stubborn kid, jo kisi ki nahi sunti thi. But she was a smart kid,
aise hi kuch bhi nahi karti thi. Look how life changed now.”, as said by Neha didi’s aunt.
Life stole her liberty in many aspects. Who would have thought that a well educated
capable girl would be tied down like this. It had all started with the decision to marry. She
had almost crossed the ‘marriageable age’ according to the society. “The pressure was
high to get married and I remember being covered with makeup every time I had to meet a
prospective groom so I don’t rejected because of my dark skin.” Ultimately the family that
she got married into followed an ideology different from hers. They stuck on to their
irrational ideas of trying to cure the child with ‘jaadu tona and jhaad phuk’. My respondent
stated clearly that she hated the time when she had to visit her in-laws for the sole reason
of the negative environment that they created, always complaining about the child’s health
instead of actually helping to entertain the kid. “Gudiya needs love and attention, not their
complains and taunts.” Because of them, Neha had already wasted much time and
resources on visiting a baba every month in a small village of Rajasthan. ‘Out of the 30
days in a month, I wasted 4 every month travelling, just to satisfy their faith.’
Attitudes of people towards children with CP and the family also add up to the
psychological trauma. The attitudes and stigmatization could be very disturbing. The child
can be deprived of educational opportunities, recreational facilities, and opportunities to
develop friendships. A good sense of self-esteem is therefore required to cope effectively
and promote good mental health for the parents and care-givers. Typically in the Indian
and African society, conditions such as cerebral palsy are normally associated with
witchcraft and sorcery. Most families perceive it as a punishment from “gods” for a wrong
act committed by a family member, most especially the mother. Normally the blame is
shifted to the vulnerable group i.e. the women. It is imperative that improvement of the
quality of life for the C.P. population, from birth to childhood, in all interventional
programmes of therapy, education, vocational training, jobs, living in adulthood and old-
age has to have the underlying attitudinal foundation of “acceptance” and ability to see
their “abilities”, and eschew disabling attitudes.

Monetary burden
Numerous studies have confirmed that remarkable emotional and physical demands of
rearing a child with a chronic health condition or developmental disability cause stress in
parents.Increased demands for care of a child with developmental disability, such as
cerebral palsy (CP), can have implications for psychological and physical wellbeing of the
parents. The parents are uncertain about the outcome of their child’s condition and the
prognosis for his/her future development, even after spending loads of money.
Another concern that Neha had was the overly expensive tools and equipments which are
required by the child. According to research, children who experience limitations in daily
activities require two to three times higher medical services than typical children. These
healthcare needs lead to a higher cost of caring for children with CP as compared to
children who are typically developing and the total cost often exceeds family’s expectation.
Previous studies have found that children with CP often suffer from fall injury. Therefore,
parents opted to pay for higher and better caregiving services to avoid unwanted injuries.
“Basic shoes that are specially required to support her body weight are as expensive as
Nike Sports shoes, since when requirement has become as costly as luxury?”, she asks
for subsidies from the government instead of false hopes.

Educational barriers
Although under the Sarva Shikha Abhiyan, a school cannot deny admission to a disabled
child, but those schools are not suitably equipped to train these students properly. Despite
the large number – more than 3,200 special schools – schools for the C.P. are
insignificantly small. These special schools brought with them a certain disadvantages.
Firstly their reach was largely urban and not cost effective. Even worse, they segregated
the special needs children from the mainstream, fostering and perpetuating a “disability
culture”.The purpose of education is beaten if not given appropriately. Long term care,
programmes for mainstreaming with vocational and educational inputs, and well
researched and meaningful approaches to prevention also become relevant.
“Once gudiya is admitted in a school which takes care of all her needs, I might get enrolled
in for my PhD as well”, plans Neha as she was never the one to sit idle. Currently she is
also a women’s ambassador on various online platforms, trying to live as much as
possible. Neha didi seems like the one who doesn’t let the the negativity dull her shine.
Even after various struggles, she stands strong, planning for the future ahead, thinking
‘what next, now?’
Some steps by the government
The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental
Retardation and Multiple Disabilities, functions under the Ministry of Social Justice and
Empowerment. DISHA scheme aims at setting up Disha Centres for early intervention for
Person with Disability (PwD) in 0-10 years of age covered under the National Trust Act,
through therapies, trainings and providing support to family members. Although many such
schemes have been introduced by the government but they are al organisation based. It
becomes difficult for an individual to approach or benefit from the schemes with the lack of
registered organisations. NIRAMAYA scheme is to provide affordable Health Insurance to
persons with Autism, Cerebral Palsy, Mental Retardation and Multiple
Disabilities. Rashtriya Bal Swasthya Karyakram (RBSK) by MoHFW, GOI is an important
initiative aiming at early identification and early intervention for children from birth to 18
years to cover 4 ‘D’s viz. Defects at birth, Deficiencies, Diseases, Development delays
including disability.
Indian Institute of Cerebral Palsy seeks to bring about positive changes in the lives of all
people with cerebral palsy through a range of policies and service provisions designed to
enhance their individual skills and knowledge and give them opportunities to exercise their
constitutional rights and fully participate and contribute to the community and country. This
mission reflects adherence to a social model of disability and to international and national
rights-based initiatives namely the United Nations Convention for the Rights of Persons
with Disability, 2007, the Persons with Disability Act, Govt. of India, 1995 and the National
Trust Act, Govt. of India 1999.
Conclusion
This research attempted to understand the life of a child with special needs, specifically
cerebral palsy through a mother’s lens. The difficulties are deeper than they appear. The
research also highlights the struggle not only the child undergoes but also the pressure on
the parents. The key point is resolution and acceptance. Once the family is accepting of
the situation, it is easier to live with the reality.
The research also brings out that even an educated individual falls prey to superstition in
times of desperation and under influence. The children living with cerebral palsy need a lot
of attention and time, which is generally catered to by the mother. This results in the
mother sacrificing a lot more of her life than she would have imagined.
The study also brings out how government has reforms in place but still quite in accessible
to the people in need. Ultimately, the help doesn’t reach to desires it.