TOPIC: A SITUATION ANALYSIS OF MOTHERS PARENTING CHILDREN WITH

AUTISM IN URBAN INFORMAL SETILEMENT OF KENYA

A CASE STUDY OF KIBRA INFORMAL SETILEMENT

CHAPTER 1

BACKGROUND, INSERTION POINT, PRESENTING ISSUE

The definition of autism has evolvedprogressed over the years. Early on,According to Kanner
(1943) noted that autism was characterized by failure to develop social relationships and a
need for sameness. The characteristics, stated slightly differently, continue to define the
condition today. In the United States, the Diagnostic and Statistical Manual of Mental
Disorders (DSM) published by theThe American Psychiatric Association (APA, 1994, 2013)
has provided the most well accepted diagnostic criteria which , and as this report goes into
print, the criteria have have changed in. In the fourth edition of the manual (DSM IV), which
defines autism as a state of condition of having Autistic Disorder was an established
condition defined by social, language, and behavioral characteristics, but there were although
several other conditions that share d similar characteristics such as: [i.e., Asperger syndrome,
Retts syndrome, and Pervasive Developmental Disorders, the diagnostic classifications that
Not Otherwise Specified (PDD-NOS)]. These diagnostic classifications were grouped under
a broader classification called Pervasive Developmental Disorders. This has been confirmed
by the ( American Psychiatric Association, 1994 stating that, ). With the advent of DSM 5,
there is only one diagnostic classification, termed Autism Spectrum Disorder. This is
Similarrelated to the earlierprevious diagnostic classification of autism as characterized ,
ASD is identified by two primary diagnostic markers: by difficulties in social communication
and restricted or repetitive behaviors and interests. Such asExamples of difficulties in social
communication include challenges in social reciprocitymutuality, nonverbal social behaviors,
and establishment of social relationships and . Rrestrictive and repetitive behaviors such as,
include stereotypic behavior or speech, excessive adherenceobservance to routines, and
highly fixatedhooked interests.

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Autism is a neuro-development disorder characterized by impaired social interaction
,verbalinteraction, verbal and non-verbal communication and restricted and repetitive
behavior ,(behavior, (Carrona ,MilunskyCarrona, Milunsky & Tager, 2008)

Autism Spectrum Disorder (ASDs), , also referred to as Pervasive Developmental Disorders

(PDDs), is a combination of several currently encompasses several ddisorders ,with most
notable disorders known as,Autistic Disorder, Aspergers and Pervasive development
disorders. not otherwise specified . ASDs are mostly characterized by
dencitsimpairmentdencits in verbal and non verbalnonverbal communication
,socialcommunication, social interaction, and repetitive or restricted repetitive interests in
some areas and behaviors ,behaviors, this is supported by National Institute of Mental
health ,(health, (2011)0. Who says that, the needs of individuals with ASDs are extensive and
include, behavior therapies ,respitetherapies, respite care, special education ,andeducation,
and supported employment . employment. Given this needs, it is estimated that the average
cost for supporting a person with ASDs through his/her lifetime is approximately $3.2
million US dollars, National Institute of Mental Health (2011).

Up Tto date much of the literature done on ASDs has been conducted from western
perspective .perspective. Importantly Importantly, (Grinker, 2008) Grinker (2008) noted that
that the western classification and diagnostic system sometime conflict with the localized
cultural conceptualization of ASDs ,ASDs, creating tension for families trying to understand
and assist a family member with ana ASDs. For example, although a doctor may diagnose the
child and recommend behavioral therapy to remediate symptoms challenging behavior, a
parent may have members of the community encouraging them to seek the advice of a witch
doctor to remove the childs curse.

In Kibera informal settlement, the diagnosis and knowledge of autism has been associated to
traditional background and preferably related to curses from family ancestry of the affected
for that reason the families of children with autism have suffered from untold sorrows of
societal isolation and male parents abandonment making female parents shoulder the pain
and suffering of parenting with no place to run for help.

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Kibera is society of people without advanced education; Since Most of them are primary or
secondary School level dropouts who saluted to the call of poverty as a push factor, hence
accelerating the level of ignorance. High level of ignorance among the inhabitants have made
men to inflict torture to women blaming them to be genetic source of the disorder.

The culture of ignorance in the informal occupations, has also contributed to poor knowledge
of children rights from the national law hence making mothers of autistic children unable to
benefit from rights and privileges reserved for them by the government for example
affirmative action policy or principle through Uwezo funds programs among others.
Special schools for such children are not found in Kibera and whenever they may be found
may be far making it difficult for their mothers to gather enough resources to take their
children to school. The only special school found 5km from Kibera is jacaranda others in
Dagoretti. Besides being far away, they are expensive that poor mothers cannot afford. In
Kenya special school go at a rate of 38,000 (ksh) per annum. Which is Unaffordable to
people who live before the poverty line?

Currently Mainstream schools have support centers with no special facilities for special
curriculum such as Toi Primary School.

Since 2005 to date enrollment in special units has being registered because of awareness
created by annual celebration of world autism day celebrated every year that have sponsored
some learners & such effort have lessened burdened for mothers. Despite all the effort made
to address the issue a great deal remains to be done, since there are many learners that are not
sponsored hence maintaining the status Quo. This research placement report addresses the
situation analysis on the challenges faced by mothers parenting autistic children in informal
settlements of Kenya, a case study of Kibera informal settlement using the pastoral cycle as a
scientific research tool. Kenya like any other developing country elsewhere in the world has
dearth information on the situation of mothers parenting autistic children and much of
available data is in qualitative nature which is not depicting scenario on the ground. This is
partly the reason why policy-makers have not been prompted to take an action to address the
situation at stake.

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In most African poor settlings, families with such children are headed by single mothers
because most male parents abandoned their families in an attempt to escape endless burden
of parenting, making the responsibility a female domain.

Autism is untreatable permanent disorder that makes parents to appear in a special fashion
unlike parents of children such children. The duty of parenting children with autism causes a
great strain on poor families both psychologically and economically since these children need
special diet, expensive special schools and care whenever they may be for instance while
performing most activities such as playing, eating, walking, sleeping among others

The study was carried out in Kibera informal settlements that are representation of all other
informal settlements within the republic of Kenya since informal settlements share the same
characteristics.

The overall objective of the study was to organize data on the situation/challenges of mothers
parenting children with autism that can prompt all the stake holders such as, policy-makers,
employers, civil-society actors, mothers of children with autism to take action to ensure the
pain of parenting is minimized.

The aim of the study is to disseminate the findings of the research to the key players e.g
policy-makers and other stakeholders so that they may fill the existing gaps.

The field research mainly focused on mothers of children with autism as the primary source
of data and reviewed existing literature from books, periodicals, dissertations and journals
from secondary source.

Since most children with autism are found in within household confinement making their
nature sensitive and secretive, snow ball sampling strategy was used to sample the
participants. All focused group and participatory appraisal discussion was pupposively
selected on the basis of their experience.

A trial of 20 mothers was reached using the only center for the mentally and physically
challenged children located at the area of Kibera with more focus on mothers of children
with autism. Finally data was thematically analyzed and meaningful conclusions drawn from

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it. Findings were disseminated through the schools staff and parents hoping that it would
reach a wider population to enable policy-makers to fill the gaps.

1.2 History of the Centre

The Mary Rice Centre was established in February 2007 in Ngei 1, lower, Langat a, adjacent
to the Kibera slum with a mission to focus on the needs of physically and mentally
challenged children. After a number of forced moves, the Centre is currently located on land
adjacent to the Charles Lwanga Primary on the outskirts of Kibera. The establishment of the
Centre was the work of two Christian Brothers. The identification of children with special
needs who would benefit from the Mary Rice Centre was guided by one leading woman from
the Kibera slum.

The Mary Rice Centre is a transitional school where children with special abilities are offered
an opportunity for social integration and rehabilitative care, experiences which are not
available to them within their homes. Currently the Centre caters for up to 15 students.

After successful transition through programs focused upon self-care, social integration and
creative skills, children are supported in accessing mainstream schools or vocational training
Centres through the provision of sponsorship support from generous and caring benefactors

1.2 Vision and Mission

Vision
To create a successful transition of children with special needs through effective basic
skills training and home based care.
In line with the Congregation of Christian Brothers we seek to be brothers to all. We strive
to create an environment where parents are educated and supported in enabling their
physically and mentally challenged children to attain self-reliance through challenge and the
development of basic social skills that highlight the special abilities of each child.

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Mission
Mary Rice mission is to educate, heal and integrate into society children with special
needs and their families.
We are fired and challenged by the gospel values of Jesus and driven by the spirit of Blessed
Edmund Rice, (the founder of the Christian Brothers), to stand in solidarity with the
marginalized. Hence we seek to enhance the human dignity of the physically and mentally
challenged children through basic social educational skills.

Aims and Objectives

The Mary Rice Centre provides a safe, engaging and nurturing learning environment that
celebrates the special abilities of children within the Kibera slums.

The Centre

Encourages parents and guardians to be more involved in their childs development,

through workshops and seminars.
Provides challenged children with the playing materials and experiences to help them
to develop creative skills and increased physical fitness.
Provides students with special needs hope and help to develop self-confidence
through learning and affirmation.
In the wider community, the Centre aim to

Educate the local community to become more sensitive and aware of children with
special needs and to ensure special ability children are accepted and embraced in the
community and in wider society.
Encouraging family members to network with other families, so as to share their
experiences of living with children with special needs, whilst building their own
capacity to provide basic support to all their children.
Introducing children to self-care activities such as toilet training, cooking and
gardening.

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 Facilitating a sense of ownership amongst parents and guardians for the Mary Rice
Centre through active participation in daily programs such as the cooking of meals for
children and staff.

1.3 Insertion entry point

My experience and entry into community was fueled by the fact that I have an autistic child.
He enrolled into special learning late at the age of nine, because of lack of knowledge about
the disorder, autism. My special experience in parenting the child with autism shades light
about the huddles and ordeals Mothers go through in an attempt to give love for their
children.
In Kenya proper medical services have been shifted to the private sector leaving public
hospitals with no proper treatment as well as drugs, I went to Kenyatta National Hospital
then one of the doctors who were attending my child told me to visit his clinic at Upper hill
Medical center if I need quality medical service for my daughter. Said Auma, a mother of
three and a domestic Worker residing at Makina in Kibera

Medical attendance also robs Mothers time that would be used for other income generating
activities to support the rest of the family. Yesterday I took my son for check-up in Kenyatta
Hospital my employer never understood and never paid my wages for that day. Jane of
Lainisaba laments in disgust.

1.4.2 School Fees Responsibility

In Kenya special school are expensive. As much as schools that are not special run for free,
special school in the other hand go at annual fee of ksh 38,000 separate with transport
.Amount that is expensive for low income earning.
"Naomi has stayed at home for one full term Said Nakhumicha a resident of Lindi.
When school run at a higher fee the poor wont afford making maternal effort concentrated at
home care and reducing family income.

As much as special school fees are high they are also far from residential places, for instance
in Kibera the only nearby school is Jacaranda which is 5km far away from Kieran making
parents work to and for daily. At Jacaranda School transport runs at a cost of ksh 4,800 per
month. I have walked on foot until I have developed chest Said according the mother
Susan a learner at Jacaranda School.

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 There are special schools with boarding facilities e.g. Dagoretti School for the mentality
challenged children Special boarding school are rather expensive than day making parents
not to dream about, I want to sell my plot so that I can take my daughter Cynthia with
autism to school.

Some children with severe autism cannot be enrolled into boarding institution since they
cant wash themselves and eat when they are left alone, therefore a joint effort of parents and
teachers are needed for their welfare. My daughter Mary, cant utilize water when washing
herself and my presence is vital for her survival Waweru of Lindi village said audaciously.
Most children with severe autism are denied entry into learning in school setting, making
parenting expensive.

1.2 Insertion point

My experience and entry into community was fueled by the fact that I have an autistic child.
He enrolled into special learning late at the age of nine, because of lack of knowledge about
autism.My personal experience in parenting the child with autism shades light about the
huddles and ordeals mothers go through in the attempt to give love for their children.

It was during the world autism day that made me to come across autism for the first day
when I read it on the daily newspaper. What caught my atentionwas the observablesymptoms
of autism which were typically see is what the newspaper stated.

The illustration ignited insatiable desire for search for centers where I could get further
information and diagnosis to determine whether the disorder was autism.

I visited little rock children center as per the directions from the newspaper. I found an
occupational therapist who diagnosed boy child of autism. Kenyatta hospital since the
disorder is untreatable what crept my mind for long was lack of acceptance which also
delayed the management process. Thereafter, accepted the situation. Not only did I seek for
help from friends organizations and other relevant authority but I also used my experience to
educate other people who had the same encounter on propone basis.

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Sharing experience with other victims partly triggered my entrance to and love for the
community of mothers with difficulty of parenting autistic children

Other than my personal account what leaves me fighting back tears is a child found at
Kiberas chiefs company talking his own words and by himself. The child belongs to a
mother who could not parent the child because she had no resources for the responsibility. All
of this broke my heart.

Kibera also has social units such as church based organizations like charity brothers of
mother Teresa, called new life home, where such mothers are supported by relief though
which is in small portion that cannot sustain them.

Mothers of autistic children are seen on the way escorting their children to school for
example Jakaranda School the only near-by special school around the area. The
exercise is done daily since they cannot afford transport for school or public transport.

During medication, the children have o attend medical check-ups on regular basis. When you
happen to visit Kenyatta or Mbagathi hospital mothers are seen sited with such
children.

In general parenting autistic child requires a team of professionals namely; special teachers,
psychiatrist and occupational therapists as clinical nutritionist and parents who are
trained on life burden minimal

In the other hand parents/mothers of Kibera are poor and cannot be in a position to afford the
cost of professional services needed. This is where my passion for the topic comes in and why
call upon my expenditure of labour and thought over it.

And that is why the researcher decided to live with participants by fearing there history and
established meaningful relationships with them. During this journey the researcher
empathetically listened to the believers, culture, politics, economics, joys, sorrows and
anxieties of the community which can lead towards empowering and transforming their
overwhelming situation which is characterized by undignified living conditions, who are and
question. A people whose destroy have been pushed to the periphery states that they are
relegated to the margins whose dignity and humanity is derived..

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The researcher inserted herself into the community for a period of eight weeks two months,
she was engaged in various activities done by the mothers of children with autism .She
accompanied five mothers every week. The activities involved cleaning of the classes of the
children, cooking, washing plates, serving the children which included feeding and assisting
some children who could not feed or help themselves during long or short calls, going out
with the children and visiting the mothers of the children at their residence.

While mourning with this community for two months, the following broke the researcher
herself, most of the autistic children could not concentrate in class rather they jump and make
painful noises, crawled on the floor, hurt themselves with objects, broke staff, beat other
children unconsciously confirming how hard it was at home with or without their mothers. It
was also challenging by the endless pain the autistic children and their mothers undergo.

1.3 The major issue of concern

The major issue of concern is poverty that has made parenting of children with autism in
informal settlements in Kenya very difficult and raising many questions that are left
unanswered. The parents of children with autism living in slums get income that cannot allow
them to fully provide for their children.. The income can only provide from hand to mouth in
spite of the expensive needs to be met such as: nutrition, education, medical, spiritual among
others. Due to such challenges, the community members have remained impenitent for the
burdens that they share with these mothers such as the ones mentioned above. This has left
them asking questions like until when shall they carry the burdens. They are therefore asking
to find out whether there can be a way in which these burdens can be released from them such
as may be finding a way of rehabilitating these children away from home?. Many factors have
therefore combined to disadvantage these mothers to fully discharge their parenting mandate.
Poverty therefore has rendered the mothers to be vulnerable to take care of their children in
several ways such.

1.3. 1 Medical responsibility

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Special children where autism is a component needs medication which brings the condition to
a half or slow down the symptomatic nature and facilitate management.

In the medical department there are a number of medics that autistic children ought to visit
regularly for example they need to visit occupational therapists, clinical psychologists, and
psychiatrists among others. In Kenya there is a medical insurance called National Hospital
Insurance Fund (NHIF). The scheme only caters for inpatient services making mothers
shoulder the expense of attending all the named medics. My daughter Akinyi has become
very hyperactive disturbing other children while performing other duties, because she has not
attended clinic for three months consecutively since the money I had I used for paying school
fees and for the rest of the family. Lamented Anyango parenting her autistic at Sarangombe.

1.3.2 Dietary requirements

Children with autism have special diets and their feeding is selectively where sugary foods
are isolated from their diets besides that they also do not feed on omega 3 fats regularly that
boosts the brain. All these puts a financial strain to poor mothers.

The kind of food that a child with autism is required to eat is very expensive and leaving the
mothers of this children ever searching for jobs that can pay highly to meet this demand and
which is not there. This pushes this pushes these women to give their children the available
staple food such as: maize, mandazi, just to mention a few, most of which have sugar and
only does the worse than good
I cant afford the omega 3 fats as Dr. Mutual prescribed during my last visit to his nutritional
clinic, said Nasimiyu the mother of Jane who resides at Mashimoni.

1.3.3 Societal isolation and prejudice

The family as a basic unit of society is union of a man and a woman with or without children.
Mothers with autistic children face family prejudices from the rest of the family members.

Other children cannot team up to give care to affected child and the responsibility is left for
the mother alone. My responsibility is to take care of myself alone and not anyone else,
Oteino said the brother George autistic.

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There are few families with autistic children that have both parents. The male parents are
alcoholics. They take alcohol as a way of escaping parenting responsibility. In an event they
comeback home late at night while drank and make noise the whole night. They blame
mothers be the source of autism. In some cases mothers are tortured mercilessly. My husband
broke my hand while claiming that I am the genetic source of autism. Nakomolo mother to
nine year autistic John residing at Makina.

Mothers of such children always are single because their male counter parts abandoned their
families and married other women.

I have shouldered the parenting task for twelve years since my husband left the family, said
Jane mother to Samuel autistic.

As we advance beyond family settlings the situation of mothers worsens. Kibera as an

informal settlement with congested housing, poor sewerage, and high level of ignorance that
has triggered high level of crimes. Most children with autismare hyperactive and make noise
by beating, destroying objects and crying without reason The neighboring community
never accepts the condition and often through their blame to parents who might have
inherited the curse from their ancestry. They might have killed someone or their parents to
blame, said Lucy the neighbor of Faith who parents a child with autism, Timothy at Makina.

Relatives and neighbors rarely pay visits to such families because of the above mention
conditions made by autistic children making mothers to live in isolation.

The isolation nature of their living makes them, denies them right to information making not
to archive their development. If you go to Faith the mother Timothy there is nothing you can
discuss of importance, Narrates Judith who is a cousin and a neighbor to Faith at Makina.

All the above mentioned kind of sufferings have combined to disadvantage the mothers of
children with autism making them vulnerable to suffering, pain and prejudices.

1.4 Researchers initial critical analysis of the issue

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To my point of view, three categories of factors have combined to accelerate the worst
situation mothers of children with autism undergoes go through, namely political, economic
and social factors. Justification

1.4.1 Justification of the issue

The effects of parenting autistic children are very adverse and root cause are known to be
associated with poverty and on the other hand the government has resources and absolute
power and mandate to allocate them accordingly. The same government has power to
legislate on all matters of concern; therefore the problem can be minimized or even brought
to halt if enough light is shed to policy-makers. This makes the issue justifiable to spent labor
and thought on it because in most cases autism is a permanent disorder but most of its
symptoms if stakeholders came together, thus reducing pain and difficulty of parenting for
mothers who shoulder it without escape.

1.4.2 The root causes

.Autism as understood, has no known cause yet but there are some ideas towards its
existence

Genetic causes of autism

According to my knowledge, autism has been culturally associated and most communities in
Africa especially Kenya, have branded children with autism and their families as a cursed
people.

Susan Folstein and Michael Rutter (1977) explains that autism in identical (or monozygotic)
twins were much high than rates in same-sex fraternal (or dizygotic) twins. They say that
Identical twins have identical genes, while fraternal twins share only some genes. The
implication of this nding was that there was potentially a very strong genetic contribution in
autism. (Rutter, 2005) explains that autism is described by a combination of defects
such as in language, social cognition and mental flexibility, and that autism is
not a single disorder but a neurodevelopmental syndrome commonly referred to
as autism spectrum disorder (ASD). He explains that several ASD predisposed
genes have been identified in the past years,

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Seizure Disorders and Electroencephalographic Abnormalities

It explains a cumulative awareness of the higher expected risk autistic children had for
developing seizures disorders which are sometimes known as epilepsy or convulsions are a
group of conditions resulting from unusual electrical motions in the brain. The signs of
seizure disorder are quite different. They can vary from brief incidences where the child
seems to refrain thus a shaking in which the child falls to the ground, loses mind and
experiences irregular stages of muscle contraction and relaxation

Neuroanatomy and Brain Imaging Studies

This talks of the numerous ways that can be used to study the brain, this can begin from
actual studies of brain tissues found at the time of postmortem studies of the living and active
brain through what is known as, functional magnetic resonance imaging (fMRI). From these
ndings, brain imaging studies have suggested that at least some individuals with autism
have larger brain. This has been found to develop in the rst year of life.

1.4.3 Consequences

There are several consequences the researcher while in dealing with this issue (Rutter, 2005),
quotes (Dyches et al 2004). There are high-risk factors that might induce acute or
chronic stress and trauma to the parents of autistic children and, in turn, lead to
dysfunctional parenting. These include: a) the ambiguity of diagnosis; b) the
severity and duration of the childs disorder; c) a very low I.Q.; d) lack of
congruity with the community norms, bizarre forms of communication and
behavior; and,e) enduring disruptive or disorganized behaviors (Kourkoutas et al
2012).Families with autistic children have been perceived by their societies in
different ways causing the families to be shaped by the beliefs systems of
autism specific to their society.

While journeying with mothers parenting children with autism, the researcher during visiting
the households, had to take a more challenging task to teach the children how to
communicate because all of the children could not interact well without guidance. These
children also had behavioral problems like making noise, crying unreasonably and even some
times beating the mother and the researcher unconsciously. Most of these children are in their

14
own world and are not aware of the dangers in their surroundings. This gave the researcher
had time to be alert and watchful. During the visits to make sure that no child got harmed.
The researcher was sometimes forced to feed, nap, and even take some children to wash
rooms to help themselves. Sometimes truly the mothers did not have food for their children
forcing the researcher to enter into her pocket so show empathy. Most of the mothers that the
researcher worked with, were single. This again forced the researcher to provide some
guidance and counselling because the mothers were traumatized the fact being that they were
damped by their husbands who claimed that the mothers lineage was the cause of the
disorder. The most common consequence was the stigma of dealing with the mothers of
children with autism made people perceive the researcher as less hence accorded her with
less respect branding her to be doomed too.

1.4.4 Potentials (local or otherwise)

While journeying with mothers parenting children with autism, the researcher during visiting
the households, was required to teach the children how to communicate because all of the
children could not interact well without guidance. These children also had behavioral
problems like making noise, crying unreasonably and even some times beating the mother
and the researcher unconsciously. Most of these children are in their own world and are not
aware of the dangers in their surroundings. This gave the researcher had time to be alert and
watchful. During the visits to make sure that no child got harmed. The researcher was
sometimes forced to feed, nap, and even take some children to wash rooms to help
themselves. Sometimes truly the mothers did not have food for their children forcing the
researcher to enter into her pocket so show empathy. Most of the mothers that the researcher
worked with, were single. This again forced the researcher to provide some guidance and
counselling because the mothers were traumatized the fact being that they were damped by

15
their husbands who claimed that the mothers lineage was the cause of the disorder. The most
common consequence was the stigma of dealing with the mothers of children with autism
made people perceive the researcher as less hence accorded her with less respect branding
her to be doomed too.

1.4.4 potentials ( local or otherwise)

to be diagnosed, families can avoid having disability identities (Ecker 2010). The
troublesome symptoms such as tantrums, self-destructive acts and other
inappropriate public behaviours associated with the disorder are difficult to cope
with. Consequently, the parents with autistic children frequently encounter
hostile or insensitive reactions from public,

CHAPTER 2

Literature review and analysis

During the study with mothers of children with autism through insertion, the researcher dealt
with local mothers who took their children both physical and mentally challenged children ot
a Centre known as, Mary Rice where their children are provided with food and education
during the day. The school is not a womenens organization, therefore have no records of the
challenges faced by these mothers. The mothers themselves have no registered association of
their own where the researcher could have found the preceding written and research data on
the challenges they face by the mothers. The researcher only chose the Centre as her case
study area and gathered the mothers for study purposes. She therefore walked around Kibera
slums and also visited these women at their residential places and through observation and
interviewing, the researcher then took the findings as her records.

2.2 literature available on the topic

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Parenting a child with autism requires mothers of such children to be careful on the safety of
their children who in most cases are in their own world and are prone to accidents. They
therefore struggle to provide safety for their children. So began Gillians struggle for services
for her daughter. Living in tenements in Montego Bay where pit latrines are still utilized and
the area is open with no fencing, there are concerns for Alicias safety and difficulties with
potty training explains (Flemming, 2012) Explains about one mother.

In families where there is a child suffering from autism, there tend to be difficulty in
providing for the expensive needs of the child. A study was carried in Taiwan with thirteen
parents of young children with autism. On the impact of having a child diagnosed on the
spectrum (Shyu, Tsai, & Tsai, 2010) reported their childs symptoms as causing a financial
strain and making them feel depressed, tired, and exhausted.

In households where there are children with autism speeeerum disorder, mothers have to be
forced by the condition of their child to shift from their career to take care of their children
with special needs. (Bayat, 2007; Myers, Mackintosh, & Goin-Kochel, 2009). More
specifically, parents reported having to put their careers on hold or switching to a career in
special needs (Bayat, 2007) (Smith, Hong, Mailick Seltzer, Greenberg, Almeida, & Bishop,
2010). Parents in Belgium noted similar impacts to their careers via in-depth interviews and

According to Osborne & Reed, 2008 in the study carried out by 15 focused groups which
was conducted by 70 parents, in the United Kingdom, on whether mothers of children with
autism receive enough support and services for their children, revealed that very few parents

reported being offered in the form of respite care, reviews with professionals, community
worker visits, or medical help with only a small minority of parents were able to access
intervention packages and educational help.

Anthony (2009) in his study with families in Ghana upon the experiences accessing support
a d services indicated that pervasive stigmatization and isolation surrounding having a child
on the spectrum within this culture. Many families report difficulty with accessing inclusive
education for their child despite national mandates for such services.

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Families of children with autism especially the mothers have so long experience rejection,
isolation and discrimination in their communities. This has created another different class of
people within our society. (Ecker 2010)

According to the researchers analysis she has confirmed that mothers parenting children
suffering from autism spectrum disorder experience similar challenges that categorises them
as a different people across the world.

The church has shown a positive response to people with disability including children with
autism spectrum disorder and has always supported the caring for such children.

Dana Sawchuk & Juanne Clarke (2015, p151), quotes Coulthard & Fitzgerald, 1999, who
say that there is some indication, for example, that church membership and/or religious
beliefs and practices are associated with better physical and mental health for families faced
with the stressors of having a child with disabilities.

Literature from other faiths such ascultural literature states that, parents believe that
genetics, environmental and events related to birth are contributing factors to autism disorder.
(Herbert &Koulioglouti 2010)

According to Tthe Jewish Perspective

By Joshua Weinstein, reports a Jewish man saying, that,
Bbefore Passover, my other childre
n enthusiastically presented me
with the projects they had
made in Yeshiva (Hebrew school), . My heart sa
nk when my son who has autism and attends
a public school brought me his book bag, which I opened only to find the Easter egg he had
paintedpainted in class. My son knows how to say the
"Shema" prayer, but can also tell me stories
aboutabout Santa and the Reindeer.

18
(Theodoros D. Loukisas, 2016)

Judaism and Special Children

Judaism has strong traditions regarding special
childrenChildren. It is said th
at the Chazan Ish, a
great Rabbi, always stood up when a special child entered the room because he said that
their souls are lofty and pure. (Theodoros D. Loukisas, 2016)

Chapter 4
Theological reflection
4.1 introduction
This chapter tries to find out those factors that are contributing to the challenges faced by
mothers parenting children with autism spectrum disoders. Many factors have been identified
toas disadvantaging these mothers to effectively care for their children. Theological
reflection is therefore an approach necessary to address and bring to light and unfold the
stories sarrounding the challnges.stor Theological reflection an approach that brings to table
the areas of concern that protects the matter under study. It therfore reminds the
contemporary society on effective, acollective, and a positive response in parenting children
with special needs in particular, autism disoder. Through theological reflection, every
member of any community will have employ a personal responsibility which will tigger other
stakeholders beginning from individual to national and eventually to global responsibility.
4.2.1 communitys movement towards insight
During the journey with the mothers parenting children with autism, it was interactive and
active participation where the sessions were begun by prayers which were based on the topic
of study, then songs such as whatsoever you do to the least of my brothers, that you do unto
me from the mothers them selves. This song was meant to encourage the mothers to
remember always to handle their meant to with love despite the challenges they face.This

19
was accomponied by several biblical verses such John 5, about Jesus healing a lame man.
This verse was meant to encoursge the mothers not to abonden theirt autistic children as the
Lame Man was aboned and no one cared for him for over 38 years but when Jesus our Lord
who have unconditional love and caring came, the man attained health and begun to walk.
The mothers and the resercher both reflected and shared in a pattern of one participant after
the other. See (apendixture 1)
4.2.2 community perspective perspective and disposition
Following the perceptions, attitudes and cultural perspectives, towards parenting children
with autism disorder, the community the, researcher accomponied experienced rejection,
exlution, stigma among others from their nsarrounding and therefore the that the researcher
accomponied have set forward some strategies to take action in ending the problem bieng
studied. Strategies such as: forming women groups where they can encourage themselves in
parenting, initiating income generating activities to help them earn a living for their children,
joining micrifinace instituitions to enable them bust their businesses among others. These
were all proposed for effective and efficient action plan.
Faith tradition oof the community.
tapping

John 5 New Living Translation (NLT)

Jesus Heals a Lame Man

5 Afterward Jesus returned to Jerusalem for one of the Jewish holy days.2 Inside the city,
near the Sheep Gate, was the pool of Bethesda, [a] with five covered porches. 3 Crowds of sick
peopleblind, lame, or paralyzedlay on the porches.[. [b] 5 One of the men lying there had
been sick for thirty-eight years. 6 When Jesus saw him and knew he had been ill for a long
time, he asked him, Would you like to get well?

20
7
I cant, sir, the sick man said, for I have no one to put me into the pool when the water
bubbles up. Someone else always gets there ahead of me.
8
Jesus told him, Stand up, pick up your mat, and walk!
9
Instantly, the man was healed! He rolled up his sleeping mat and began walking!

(n.d.).

Grinker, J. (2008). autism. new york: pauline.

Theodoros D. Loukisas, D. P. (2016). Mothers Experiences of Children in the

Autistic Spectrum in Greece. International Journal of Disability,
Development and Education , 63. new york: pauline.

Autism and Autism Spectrum Disorder (ASD) in the North American Roman
Catholic Print Media, 1990
2013, Journal of Disability & Religion, 19:2, 146-167, DOI:
10.1080/23312521.2015.1024910
To link to this article:
http://dx.doi.org/10.1080/23312521.2015.1024910

21
Individual persons and institutions it is high time we address the issue of pain undergone by
mothers parenting children with autism if we really want to bridge the gap between special
and non-special thus, normal family of children with autism and of those with non-autistic
children. By so doing, this can lead to a better society. A society that embraces togetherness
and equity.

Though the global world and government of Kenya in particular is working hard mainstream
creating uniformity in the contemporary society, this has remained a dream that has no yet
become true.

Disability is not inability .as the saying goes. Life without development is like
stagnant water which to a person processing human dignity is not healthy. Therefore mothers
parenting autistic children can do a marvel development if included and welcomed. Just to
bridge one brought about by parenting this autistic children can bring great transformation

CHAPTER 2

2.1 This chapter explains how the researcher was carried .It focuses on the research design,
objectives of the study, the research questions, the assumptions, scope and limitation ,
research design, research methodology.

2.2.1 The objectives of the study sought to investigate the following

To investigate how autism affect marital status of mothers parenting children with autism

To find out how autism affect income of mothers parenting children with autism

To establish how mothers parenting children with autism meet home care of their children
while they are away

To establish strategies on how mothers at many centers parenting children with autism can be
empowered.

2.2.2 The questions sought to answer the problem under study

22
How does autism affect income of mothers parenting children with autism?

How does autism affect marital status of mothers parenting children with autism?

How does a mother parenting children with autism meet home care of their children while
they are away?

2.2.3 Assumptions of the problem being addressed

The study assumes that there is a relationship between poverty and mothers parenting
children with autism

The study assumes that there is link on how neighbors, friends, relatives handle mother of
children with Autism that contribute to their painful experience.

The study assumes that if empowered mothers parenting children with Autism can greatly
improve their lives

2.2.4 Scope and I imitating Factors

The study is purposely carried out in urban settlement of Kibra, in Nairobi County Kenya.
The study includes mothers parenting children with Autism feeling all the pain and burdens
of parenting these children .The study also includes children with Autism who are enduring
in the endless journey of suffering.

Accessing some mothers parenting children with Autism was difficult. Since they live in
denial this delayed data collection through interview and even focus group discussions and
even observation since they rarely appeared in full when required.

Through snowball sampling it was time consuming because some mothers did not come from
the same area.

2.1 In order to clearly appreciate how mothers parenting children with autism experience and
are affected, by the same, the researcher decided to employ a case as a research design. At
Mary rice Care Center, Mulwas 2009, and 56 states that this is an in-depth study of a given
situation relevant to the research at hand.

23
The researcher embarked on the research design because the target group had same
characteristics of other urban slums.

The field research was structured in the following parts .The first part was to meet the
director of the organization to give am okay to meet the target group. Part two was to meet
the target group and begin to journey with them, to learn with them and to share with them
their experiences, Part 3 was to identify the right research tool could suit my participants to
enable me get the required data was to be both qualitative data was to be obtained because it
brought out the perceptions and experiences of my participants in depth. The quantitative
data was to put the data into numbers so as to give clear measurements .Part 5 was to end the
flled research by bidding by the participants.

2.4 Research Methodology

2.4.1 Data Collection

The data was collection was subjected to approval by the director of the Mary Rice Centre
who then introduced the researcher to the participants who by then were only five. The
researcher on seeing how most of her participants school dropouts and that she also wanted
to exactly know and understand their feelings, the researcher administered open ended
interview, focused group discussion and participant observation to collect data from 20
participants which she managed to find were both qualitatively and quantitatively .The
researcher used the following methods in collecting data.

2.4.2 Observation guide; while conducting individual interviews, the research found out
how it was in the inner feelings of the mothers parenting children with autism by
unconsciously observing their behavior and mannerism. Another issue, through observation
of these mothers, and their children, family, friends and neighbors as well as their activities
they carried out were ascertained.

While conducting interviews the researcher gave enough time to the participants so as to get
enough information to support the research topic

2.4.3 Focused group discussion

24
Focused group discussion (FDGs) were held by thee researcher with a selected number of
mothers parenting children with autism .The importance of using focused group discussion is
that different people shared their views so as to reach a conclusion towards a common goal.

The focused group enabled the researcher to capture the pertinent issues and dynamics of
mothers parenting children with autism from an array of respondents (platform for Labor
Action 2007)

Interview

The researcher used open ended interview to collect data from participants. The interview
was carried out one on one and the researcher ensured that the participants had enough time
to interact with themselves and give enough information.

This was done several days since the target group only came in turns of mostly five mothers
and sometimes threes.

Interviews are important because while with the researcher the participants gives all
information willingly hoping that at the end there will be a way forward for their problem
being addressed.

Interviews also makes participants feel included and recognized as key informant of the
problem being addressed .Therefore feel free giving researchers humble time during data
collection .Interviews al reveal nonverbal information.

2.4.2 Research tools and Instruments

2.4.3 The researcher used the following research instruments during data collection:

Interview

Focus group discussion

Observation guide

Sampling Procedures

25
For the researcher to get information from various participants of the group within the target
group since they only appeared at the center in five, the researcher used snowball sampling
procedure so as to arrive at the target number of participants which was 20. Mothers
parenting children with autism who were interviewed .The researcher organized four focused
groups of five participants each after two weeks. Some meetings were made shortly each day.
This was in order to know if there was something new.

The procedure is very important because it gives the research easy time of finding the
participants and it also releases the researcher from consuming time in searching for
participants. The procedure also brings all the victims together to share their issues with an
aim of finding a way forward.

It was sometimes difficult to deal with participants as they kept on changing .It was very
promising when they met and during discussions they came up with different issues they
underwent, giving the researcher clue on recommendation.

CHAPTER 3

1.1 Introduction: Summary of Chapter

This chapter represents findings obtained from the field research that was to answer the
questions raised on the topic being addressed. The findings was represented using the
research instruments used by the researcher explaining in detail how the research instrument
made the researcher to come up with the research findings. The data was presented both
qualitatively and quantitative. Qualitative data was presented and Quantitative data will be
represented.

Demographic Profile

Personal detail of mothers

The total number of mothers parenting children with autism was 20 mothers. This is the
number that made the participants.

Age of respondents

26
According to the results found by the researcher during interview, most of the participants15
(75%) were between 25-35 years while 2 (40%) were between35-40 years and the remaining
3 (60%) were between the ages of 40-50. Knowing the ages was key to since it left the
researcher with the question as to why this problem affected mostly young women (See
appendix i)

Level of education

After collecting data about the level of education, the researcher found out that majority of
the participants 17 (85%) had primary level of education whilethe rest of the participants 3
(15%) had attained secondary level of education. It was important to note that none of the
participants had gone to college. This was significant to the researcher in that the participants
might have lacked basic medical knowledge on how to handle pregnancy and even their
children while at a tender age. (See appendix ii)

It was interesting to the researcher when she found out that majority of the 16 (80%)
participants were Catholics and the rest 4 (40%) were from Islamic religion. This was
important to the researcher in that perhaps that is why most of the participants had accepted
to have, love and care for their children showing high standards of respect of human dignity.
(See appendix iii)

The researcher intended to know the ages of participants because from the observation, most
of the participants were young .The researcher wondered that could the problem be because
of the vulnerability of the participants. The researcher also wanted to know the level of
education of participants because in her action plan, the researcher intends to equip the
participants with modern knowledge on the management of their children.

According to the participants, majority of participants had primary education which most of
them dropped out, that is 75% of the respondents had primary education while 25% of the
respondents had secondary education.

27
Graph 1

How many children do you have and how many are autistic?

The above questions helped the researcher to know if some mothers would be parenting more
than one Autistic child. The researcher also wanted to know how such mothers really
managed theirchildren. According for what is represented in the above table, few mothers
parented more than one Autistic child thus 1 (5%) of the participants parented three children
with autism thus one girl and two boys. While 19(95%) of the parents parented one child
with Autism.

Graph 2

What is the source of your income?

The above question targeted to know the ways mothers parenting children with autism used
to ensure survival. The level of income was very poor since during the interaction with the
researcher while surveying with the participants, they cried of how hard it was to get a job to
facilitate the up growing. Of 10 (50%) of the respondents said they had to move to the nearby
estate every morning where they said it depended on lack to pick laundry for the residents of
the estate .6 (30%) of the participants had small businesses while 4(20%) were recruited as
regular house helps.

Pie chart 1

How does autism affect your marriage?

The study aimed to know how the mothers felt in their marriages. This was important
because it helped the researcher to come up with right recommendation to enable he mothers
to reduce the pain of parenting. It also helped the researcher to propose for the
consientization of the fathers on the issue to share weight of parenting

Following the presentation on the pie chart above ,majority of the mothers were single
showing that fathers run away from the responsibilities of parenting thus 8(40%) were single
mothers.5(25%) were married but in conflict while 7(35%) were separated but fathers pay
visits occasionally.

28
How does autism affect your income?

Pie chart 2

The chart above represents the views of the participants on the effects of autism on their
income

The researcher formulated the question so as to know how the participants used their income
to take care of their children with autism. This question was also to help the researcher to
efficiently recommend on appropriate ways of income generating activities.

According to the pie chart above 15(75%) of the participants cried of hardship in educating,
feeding, medical care and general up keep of the children while 5(25%) received some aids
from well-wishers, such as government thus Uwezo Fund Programme among others .

Pie chart 3

In your opinion what do you think are the courses of autism?

It was important for the researcher to use this question so as to find out what the participants
would suggest caused autism. This was to help the researcher to concertize the participants
who during the research and interview strongly said that autism was a traditional issue and
that their children are be witched. Therefore it was important through this question, the
researcher would recommend possible current causes of autism to keep mothers alert before
and after delivery.

As presented by the pie chart above 10(50%) of the participants were for the view that autism
was brought about through bewitching. According to the researcher this would delay early
dictation and management of autism syndrome in future. 6(30%) of the participants
suggested that autism was brought about by lack of awareness on handling the baby during
pregnancy and after birth. While 4(40%) of the participants had mixed opinions suggesting
that autism was caused about by both bewitching and mishandlement of the pregnancy and
the baby. All the participants agreed that diseases would also be the cause of autism, thus 20
participants proposed diseases as a cause.

Graph 2

29
What is relationship between you and the people around you?

The researcher used the question above to find out how people perceive mothers parenting
children with autism. This was important because the strategy concentization would
effectively be used and implemented.

The graph above reveals the opinions of the participants as follows 20(100%) said they were
excluded and neglected by the neighbors friends and relatives. They said they struggle with
their autistic children alone and locked them indoors while away to look for means of
survival. They said that a few of the neighbors, friends, and relatives tried to pretend to love
them.

Graph 3

What is the behavior of the child /children while at home?

This question was carried out so as to help the researcher to know how their children behaved
while at home. It was important for the researcher to know the behavior of the children so
that he would comment on the best ways of management.

The views of the participants were presented by the graph showing that the most of these
children were very destructive and have left their houses with nothing valuable. This was
denoted by 15(75%) of the participants. 3(15%) of the participants said their children mostly
made noise at the time and reacted aggressively to visitors and places from home while
2(10%) of the participants said their children did not attack and were not destructive.

Graph 4

What are your opinions towards improving your living standards?

The researcher used such a question to help know what ways the mothers would suggest to
make their lives better. This was important to help the researcher recommend appropriate
empowerment methods.

The following are the results that were obtained from participants through interviews with
mothers parenting children with autism.

30
Interviews were used to enable the researcher obtain the required information. The
facilitation of interviews was made easier right from the day the researcher entered through
active involvement with the participants.

The interview revealed that 1(2%) of the participant had more than one autistic child. The
source of income was the biggest challenge where 10(5%) depended on casual jobs 6(30%)
of the participants had small businesses and the rest 4(20%) were regular house helps.

Majority of the participants were single mothers and carried out parenting responsibilities
alone. This was presented as 8(40%) of the participants were single, 5(25%) had conflicted
marriages and the rest 7(35%) were separated and fathers only visited occasionally.

The interview clearly shows that meeting financial expenses of these children was a big
challenge and it was not easy to pay for their expensive schooling ,nutrition ,medical care
and safety which was 15(75%) of the participants while 5(25%) of the participants received
aid from well-wishers and organizations.

10(50%) of the interviewers were for the opinion that autism was their children were
bewitched so they became autistic while 6(30%) of the interviewees suggested that autism
was brought about by lack of awareness on handling pregnancy and the baby during and after
birth.

During the interview 20 (100%) said they were excluded and rejected by their neighbors
friends and relatives ,saying that they struggled with their parenting burden alone and in most
cases locked in their autistic children while were away to look for means of survival.

While interviewing the participants it came out that 15(75%) of the interviewees expressed
that their children were very destructive and had broke almost everything in their houses.
3(15%) said that their children made a lot of noise, which was disliked by the neighbors
while 2(10%) of the interviewees expressed that their children humanizations not talked
hence knowing their feelings was difficult and that this made people to easily abuse them in
the absence of their parents.

31
During the interview 15(75%) proposed of income generating activities while 3(15%) of the
interviewees suggested help from charitable organizations while 2(10%) desired their
children to be taken to care centers to avoid abuse by people around.

Focused group discussion

In order to understand the target group well and to make this method effective, the researcher
was involved in meeting and prayers and was able to conduct focused group discussions.
While discussing about autism with the mothers, key issues emerged and were fully
synthesized .For instance issues on challenges on income where most mothers openly said
that their children were destructive and that they hardly kept something valuable. Through
several discussions made the mothers propose the establishment of income generating
activities that can sustain their life.

The following issues emerged during focused group discussion facilitated by the researcher
190(95%) of these participants had only one autistic child while the rest 1(5%) had more than
one autistic children continued.Following the interactive group discussion on how parenting
children with autism affected their marriage, it came out that 10 (50%) were single mothers
which to the researcher was testimony indicating that there was need for various types of
empowerment to make them effectively provide for their children since they were alone
hence required reinforcement of the energy they had. 6 (30%) of the participants were
separated and the remaining 4 (20%) stayed in marriage which they said was accompanied
with now and then domestic conflicts such as beatings, calling of names among others.
Through empowerment the women could also pass on the knowledge gained to other victims
of the same.

The issue of income crisis came up as a generative theme where 15 (75%) of the participants
were unable to meet the full care of their children. This indicated that there was need for
financial empowerment which could allow them to feed their children well, educate and
manage the good health of their children.

During the group discussion about how mothers parenting children with autism managed
their children while they were away, only 5 (25%) had friends who took care of their

32
children. 5 (25%) took theirs to Care Centre and the remaining 10 (50%) locked their
children indoors while they were away to try to make ends meet for the day.

The relationship with the surrounding people was also another generative aspect when almost
all participants thus, 18 (90%) complained of the big gap of relationship which was growing
larger and larger, poorer and poorer while the 2 (10%) of the participant. This motivated the
researcher to work hard towards working on how people could be conscientized so that they
can change their mind set and attitudes towards challenged families thus.

This brought up into the mind of the researcher to recommend on the establishment of more
Care Centre to accommodate this children so that their mothers could perform their work
effectively at their working stations. This came about when during discussion, several
women shared that their salaries were deducted for payments of what they had broken or
spoiled or for what they did not do well while at work place. The participants said that this
happened as they wanted to rush home to take care of their challenged children. They added
that they lacked patient while at work place in fear of their locked children getting burnt due
to unprofessional electric connections which they claimed is rampant in the informal
settlement of Kibera. Another reason for not paying keen while at work was that they rushed
to provide safety for their children who were at risk of sexual abuse by neighbors.

General conclusions

From my research placement experience, I learned that it is easy to insert ones self with
people at the ground level than at office level. The researcher also learned that was very key
during insertion as it enabled the researcher to get the right information by understanding and
knowing the language of the target group.

During insertion the researcher learned that, to effectively apply the correct measures to take
the right action plan, it requires more time and resources like giving participants money to
reach and collect their fellow victims during snow ball sampling which made the researcher
to reach only a few participants of a number twenty. The researcher therefore needs to create
enough time to find some data that was left out.

Appendices

33
Demographic Profile

Personal detail of mothers

The total number of mothers parenting children with autism was 20 mothers. This is the
number that made the participants.

Age of respondents

25 35 = 15

35 40 = 2

40 50 = 3

Level of educationof respondents

Primary Level 17

Secondary 5

College level None

Denomination of respondents

Catholic

Islam

Questions for the interview guide

1. What do you think are the causes of autism?

2. How does having an autistic child affect your marriage?

3. How does having autistic child affect your income?

4. What is the relationship between you and the people surrounding you?

5. How do you manage the care of your child while away?

34
Questions for focused group discussion

1. What do you think are the causes of autism?

2. How does having an autistic child affect your marriage?

3. How does having autistic child affect your income?

4. What is the relationship between you and the people surrounding you?

5. How do you manage the care of your child while away?

References

Your work is good but I would like you to organize it as an academic

paper
Do editing, formarting and stop copy and pasting material, show
references of your sources
Its difficult to read when the work is not organized
Some materials you refer as pie charts etc are not found!
Kindly organize your work and send to me as your final copy

35