Family Resilience in Who have Children with Down

Syndrome
Erlina Asrofatul Insani
Universitas Islam Negeri Maulana Malik Ibrahim Malang
easrofatul@gmail.com

Abstract
The presence of children with special needs has a big effect on the whole family, both parents, siblings and
other family members. Parents who have children with special needs face big challenges in caring for and
raising them. The family also feels several stressors that cause the accumulation of stressful events.
Parents are expected to be able to adapt and endure the pressure they face so that they can still carry out
their activities properly. This paper focuses on discussing the resilience of parents who have children with
special needs. Parents have the main role and responsibility in caring for and raising them, because it is
from the family that will determine their further development. A well-functioning family will be able to shape
society into a strong group. The discussion begins regarding children with special needs, resilience and
resilience of parents who have children with Down syndrome
Keywords R e s i l i e n c e , D o w n S y n d r o m e , F a m i l y R e s i l i e n c e i n W h o h a v e C h i l d r e n
with Down Sydrome

A. Introduction
The World Health Organization (WHO) estimates that there are 8 million people with Down
syndrome worldwide. With an estimated incidence of 1: 1,000 per birth or around 3,000 to 5,000 births
of children in the world who experience this condition. According to the results of Basic Health
Research, from 2010 to 2018 cases of Down syndrome in Indonesia tend to increase. The latest
research in 2018 shows data on disabilities from birth to children aged 24 to 59 months as much as
0.41 percent. Based on research conducted by Down syndrome, it contributes to the greatest disability,
up to 0.21 percent of the total weighted 57, 361. What is special about people with Down syndrome in
general, such as an average IQ of less than 70, relatively short height, smaller head, flat nose
resembling mongoloid people. These characteristics are sometimes the cause of society giving
negative statements and behavior towards the existence of people with Down syndrome. Until now,
especially in Indonesia, attention to the feasibility of life of people with Down syndrome is still lacking.
Evidenced by the widespread discrimination against sufferers so that they do not get the treatment
they should. This can be caused by a lack of thorough education and information regarding "What is
Down Syndrome?" which in the end many consider people with Down syndrome "strange". As human
beings who are given physical perfection, we must be more cooperative, positive, and supportive in
people with Down syndrome. People with Down syndrome have the same rights and opportunities as
other normal humans to develop their potential. This includes developing their talents and social skills,
both in the realm of society and government.
Down Syndrome
Down syndrome is a condition of retarded physical and mental development in children
caused by abnormalities in chromosomal development according to Cuncha in Mark L.Batshaw,
M.D. According to Bandi (1992: 24) children with mental disabilities generally have more
abnormalities than other disabilities, especially their intelligence. Almost all cognitive abilities of
children with mental disabilities experience abnormalities such as slow learning, ability to solve
problems, lack of ability to establish causal relationships, so that their appearance is very different
from other children. Children with mental disabilities are characterized by weak motor control, lack
of ability to coordinate, but on the other hand they can still be trained to achieve abilities up to a
normal point. Other signs such as reading a book close to the eyes, mouth is always open to
understand something understanding takes a long time, has sensory difficulties, has speech
impediments and verbal development.
Down syndrome is a genetic disorder that causes physical and mental retardation with
characteristics that are unique to their physical condition. In general, the physical development
and growth of children with Down syndrome is relatively slower. Mental retardation experienced
by children with Down syndrome results in delays in the development of cognitive, motor and
psychomotor aspects (Wiyani, 2014). Down syndrome is different from people with other disorders,
where children with Down syndrome have the distinctive feature of having similar facial
characteristics (a thousand faces), so that they are easily visible to the naked eye and have
mental retardation. This research focuses on children with Down syndrome where this is a
disorder of physical and mental development retardation, Down syndrome itself is part of mentally
retarded children.
Down syndrome is a condition of physical and mental retardation in children caused by
abnormal chromosomal development. Children with Down syndrome have an abnormality on
chromosome number 21 which does not consist of two chromosomes as it should, but three
chromosomes (trisomy 21) so that genetic information becomes disturbed, this chromosome is
formed due to the failure of a pair of chromosomes to separate from each other when division
occurs. Chromosomes are special fibers found in every cell in the human body where there are
genetic materials that determine a person's characteristics (Smart, 2010).
Parents have an important role in the development of children with Down syndrome.
Geniofam (2010) states that the role of parents in providing treatment for children with Down
syndrome in an appropriate, targeted, as early as possible and giving affection is very important
for children's development, and can provide great opportunities for children to be able to live
independently in the future.
Until now there has been no definite research on the causes of Down syndrome, but the
conditions that are often found as a cause for the emergence of Down syndrome are, among
others, due to their existence
The high risk of having a child with Down syndrome is the age of the parents (Gunarhadi,
2005). The older the mother, the more the mother has the opportunity to give birth to a child with
Down syndrome. An increased chance of giving birth to a child with Down syndrome occurs when
the mother is 35 years and over. Age affects the chance of having a child with Down syndrome, a
father who is 50 years old has been shown to have an effect on the conception (fertilization) of a
fetus with Down syndrome (Gunarhadi, 2005).
Every parent who has hopes for their children and wants to have children who are perfect in
their development. However, it often happens that these expectations are not in accordance with
the reality, where children show problems in their development, parents who have children with
Down syndrome tend to show negative emotional reactions when they find out that their child is
experiencing a disorder and requires more effort to overcome problems that arise in their child's
behavior. (Susanti, 2014).
The first reaction of parents when their child is said to have problems is disbelief, shock,
sadness, disappointment, guilt, anger and rejection. There are times when parents contemplate
and don't know what the right course of action should be done. Not a few parents then choose not
to be open about their child's situation to friends, neighbors and even Sutadi's family (in Susanti,
2014).
extra chromosome in every cell of the body, another cause that gives rise to
risk factor
suggested that the level and anxiety of parents who have children with Down syndrome is
higher. Here parents are required to be able to overcome the frustration that is felt. This
understanding leads to resilience in parents who have children with special needs, in this case
children with Down syndrome. Resilience is a process that naturally occurs within the individual.
It's just that how long it takes someone to go through the process is individual. People with good
resilience are individuals who are empathetic, calm, optimistic, and believe that everything can
change for the better. Individuals have hopes for the future and believe that individuals can
control the direction of their lives. Optimism makes you physically healthier and reduces the
possibility of suffering
Down syndrome is a chromosomal disorder, namely the formation of chromosome 21, this
chromosome is formed due to the failure of a pair of chromosomes to separate from each other
during division. In contrast to autistic children, who at first glance look like normal children,
children with Down syndrome can immediately see the difference from normal children. Their
faces are round like the full moon (moon face), with narrow eyes whose edges are drawn
upwards (Namira, 2012).
Down syndrome is a condition of retarded physical and mental development of children
caused by chromosomal abnormalities. Chromosomes are special fibers found in every cell
in the human body, where there is genetic material that determines a person's character (Wiyani,
2014).
According to Santrock (2011), Down syndrome includes mentally retarded children who
experience physical abnormalities in facial appearance that are similar to one another. The
development of children with Down syndrome has a much slower development compared to
normal children in general.

Resilience
 Resilience is a process of coping with stressors, difficulties, changes, and challenges that
are influenced by protective factors (Richardson, 2002). This psychological resilience will reflect
how strong and tough that is in a person. Psychological resilience is characterized by the ability
to bounce back from negative emotional experiences. With their abilities, resilient individuals
will try to face and then recover from various stressful conditions (Block & Kremen, 1996 in
Tugade & Fredicson, 2004). Tuner (Yuniardi & Djudiyah, 2011) suggests that resilience is a
mental capacity to bounce back from adversity and to continue to live a functional and
prosperous life. According to Ong (in Rinaldi, 2010) suggests that resilience is the success of
adapting to the pressure that occurs.

Resilience refers to the ability to deal with persistently disruptive changes at a high level in
a good way, allowing you to have good health and energy when under pressure, being able to
bounce back from adversity easily, being able to overcome any difficulties (adversities) by
using a new way of doing things to live life when the old way is no longer appropriate (Siebert,
2010).

Bonanno (2004) states that resilience aims at recovery in a condition that is detrimental or
causes trauma. The development of resilience skills can be used as a means to train someone
to think more accurately about themselves and the world, lead to better relationships, be more
productive in the face of adversity, and feel excited and energized in life (Reivich & Shatte,
2002).

Newcomb (in La Framboise, 2006) sees resilience as a protective mechanism that modifies
individual responses to risky situations at critical points throughout one's life. The concept of
resilience is based on the individual's capacity to accept, deal with and transform the problems
that have been, are being and will be faced throughout an individual's life. Resilience can be
used to assist individuals in dealing with and overcoming difficult situations and can be used to
maintain and improve their quality of life.

Werner and Zimmerman (2000) revealed that resilience contains three fundamental
components, namely:

a. The ability to change or adapt to negative circumstances

or hard.

b. The capacity to succeed in the face of the negative consequences of expectations

not fulfilled

c. Capacity to decide to face the risk of a problem rather than

avoid it.

Resilience is not a static trait possessed by individuals since

born or automatically survive within the individual after once the individual succeeds in
achieving it (Meichenbaum, 2008). Resilience is a dynamic process that includes positive
adaptation in the context of situations that are difficult, contain significant hazards or obstacles,
which can change over time and in different environments (Luthar et al, 2000; Cicchetti & Toth,
1998 in Kalil, 2003). Grotberg (1995) states that the ability of resilience is not the same for
everyone, because the quality of a person's resilience is largely determined by the level of age,
level of development, intensity of a person in dealing with unpleasant situations, and how much
support is in building that resilience.

The development of resilience in individuals is influenced by individual characteristics at

each level of age, experience, learning process both consciously and unconsciously, as well as
the influence of innate factors. Understanding of individual resilience must also be done by
understanding how the environmental conditions in which individuals grow and learn various
things throughout the life span (Smith-Osborne, 2007). Resilience is not seen as a definite
attribute or specific outcome but instead as a dynamic process that develops over time (Everall,
et al., 2006). Resilience is a trait that is not static and can develop over a certain period of time.
It comes from supportive relationships, religious beliefs, culture and traditions that help
individuals overcome inevitable problems in life (Wykle, et al., 2011 in Safi, 2014).
 Resilience is influenced by internal factors which include cognitive ability, gender, and
individual attachment to culture, as well as external factors from family and community.
Resilient individuals, have the ability to control emotions, behavior and attention in dealing with
problems. On the other hand, individuals who have difficulties in emotional regulation find it
difficult to adapt, establish relationships with other people and maintain relationships that have
been established with other people (Reivich & Shatte, 2002). Richardson (2002) states that
there are two components that must exist in identifying resilience, namely exposure to difficult
and stressful situations, significant obstacles or threats in an individual's life, as well as positive
adjustments that individuals bring to these situations. Thus it can be concluded that resilience is
a dynamic process that includes effective coping and positive adaptation to various situations
and conditions that give rise to great stress, which is determined by various relevant factors
both internal and external in the life of each individual.

According to Grotberg (1995) there are several sources of resilience that exist in individuals,
namely as follows:

1. I Have (external support source)

Support comes from the environment around the individual. This support is in the form of
good relationships with family, a pleasant school environment, or relationships with other
people outside the family. Through I Have, one feels that they have a trusting relationship. This
kind of relationship is obtained from parents, other family members, teachers, and friends who
love and accept the child. Resilient individuals also have structures and rules in the home set
by their parents. Support provided by parents or other family members will be very helpful in
forming an independent attitude in a person.

2. I Am (individual ability)

Is a power that is in a person, this power includes feelings, behavior, and beliefs that are in
him. Resilient individuals feel that they have attractive characteristics and are compassionate
towards others. This is marked by their efforts to always be loved and love others. Resilient
individuals also feel pride in themselves. Individuals will be proud of what has been achieved.
When faced with problems or difficulties, high confidence and self-esteem will help overcome
these difficulties. Individuals always feel independent, responsible, able to carry out activities
with their own abilities.

3. I Can (social and interpersonal skills)

I Can is an individual's ability to carry out social and interpersonal relationships. Individuals
can learn this ability through interaction with people who are around. Individuals also have the
ability to communicate and solve problems well. Individuals will be able to express thoughts
and feelings well. Resilient individuals are also able to find someone to turn to for help, to share
feelings and problems, and to find ways to solve personal and interpersonal problems.

Wolins (in Ekasari and Andriyani, 2013) resilience is an extraordinary ability possessed by
individuals in facing difficulties, to rise from difficulties which is the foundation of all positive
characters in building healthy emotional and psychological strength. Grotberg (in Desmita, 2012)
defines resilience as individuals who are able to survive and recover from negative situations
effectively while other individuals fail because they do not manage to get out of unfavorable
situations. Individual abilities or capacities possessed by a person, group or community that
make it possible to deal with, prevent, minimize and even eliminate the adverse impacts of
unpleasant conditions or even change miserable living conditions into a natural thing to
overcome.

According to Siebert (2005), resilience is the ability to cope well with the biggest disruptive
and sustainable changes by maintaining good health and energy when under consistent
pressure so as to bounce back from setbacks.

Resilience is "The ability to persevere and adapt when things go away." This means that
resilience is an ability to survive and adapt when something goes awry. Individuals are required
to quickly make adjustments when experiencing problems or getting pressure in their lives
(Reivich and Shatte, 2002).
B. Results
 The method used in this research is literature review, namely by looking at various
previous literature in order to find theories that are relevant to the problem under study.
C. Discussion

Mangunsong (in Budiarti, 2013), groups four types of parental responsibilities towards
children with special needs. First, parents who have children with special needs have a
responsibility as decision makers because it is the parents who decide which alternative their
child will take. The second responsibility is that parents need to adapt to circumstances,
socialization of children and so on. Third, parents as teachers of their children are not
professional educators for children with special needs, but parents can play a role in providing
some training on certain aspects to the extent of the parents' abilities. Finally, mothers also
have responsibilities as advocates, namely as supporters and advocates for the interests of
their children with special needs.

A number of protective factors, both internal and external play a role in strengthening the
formation of conditions of individual resilience so as to bring about positive coping and
adaptation. Internal protective factors are religiosity, willingness to learn, awareness of social
support, awareness of self-identity. Meanwhile, protective factors are external, namely social
support, psychological intervention, the existence of sources of inspiration and public facilities
for children with special needs. In strengthening protective factors in children with special
needs so that they will be able to overcome pressure and be able to achieve resilient
characteristics (Hendriani, 2011).

Based on the research of Edyta and Damayanti (2016) states that one of the factors that
supports parents to be resilient when they have children with disabilities is the factor of
religiosity. It is shown by always surrendering to the Creator so that they are tolerant in
accepting their children with all the limitations they have. The same thing was also explained by
Yumpi (2017) that the efforts used to foster parental resilience are using religious coping by
practicing rituals of worship and using beliefs that connect themselves with God in solving
problems so as to help individuals to adapt in stressful life situations. The next step is to find
sources of strength from seeking the support of those closest to you. In addition, by being
grateful for the development of children

Every parent who has a child with special needs has different resilience. These differences
are seen from the educational background, occupation and economic background. The factors
that can affect the process of parental resilience are support from the family and the role of the
surrounding environment which has provided motivation and encouragement from within
individuals who do not want to continue in sadness or disappointment, accept deficiencies in
their children (Lestari & Mariyati, 2015).

Regarding the factors for forming the resilience of parents who have children with special
needs, according to Muniroh (2010), it is influenced by several factors, namely internal and
external factors. Internal factors are personal competence, tolerance for negative influences,
positive self-acceptance, self-control and spiritual influences. Influence externally in the form of
support from family, neighbors and people around him. The dynamics of resilience for parents
whose children receive a diagnosis of a child with special needs will have a long process of
adaptation, acceptance and meaning. After this process is experienced, parents perceive more
positively the problems that occur, and are able to accept and be tolerant of the problems they
face so that the desire of parents to find solutions for their child's recovery is fostered.

There are three factors that are the key to family resilience, namely belief systems,
patterns of family organization and communication processes within the family. Beliefs are the
lens through which you view the world and life. The belief system is at the core of family
resilience which includes three aspects, namely the ability to make sense of suffering, a
positive outlook that creates an optimistic attitude and diversity (Lestari, 2012 in Yumpi &
Satriyo, 2017).

The concept of family resilience does not only see individuals (family members) as a
potential resource, but extends that the family is a functional unit. Patterson (2002, in Yumpi,
2017) says that family resilience involves the potential for change and growth both personally
and relationally which can help get out of trouble. Families can become stronger and smarter
when dealing with problems in the future. Problems can be an opportunity for families to
 reassess priorities, stimulate better relationships and family goals. Family members may
discover or develop new wisdom and abilities.

E. Conclusion

Based on the description above, it can be concluded that a number of protective factors,
both internal and external play a role in strengthening the condition of individual resilience so as
to bring about positive coping and adaptation. Internal protective factors are religiosity,
willingness to learn, awareness of social support, awareness of self-identity. Meanwhile,
protective factors are external, namely social support, psychological intervention, the existence
of sources of inspiration and public facilities for children with special needs. There are three
factors that are the key to family resilience, namely belief systems, patterns of family
organization and communication processes within the family.

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