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The child with a disability:

Selected impairment: Down syndrome
Child with impairment: Ben

Down syndrome (DS), also called Trisomy 21, is a condition in which

extra genetic material causes delays in the way a child develops,
both mentally and physically (The Nemours Foundation: KidsHealth.
2012). The physical features and medical problems associated with
Down syndrome can vary widely from child to child. While some
children with DS need a lot of medical attention, others lead healthy
lives.
Down syndrome is not a condition that can be prevented, but it can
be detected before a child is born, like in this case with Ben. Early
detection allowed for his parents to prepare for Bens future needs
in regards to development and growth. Health issues that may occur
with DS can be treated, and many resources are available to help
children and their families who are living with the condition.
Normally, at the time of conception a baby inherits genetic
information from its parents in the form of 46 chromosomes, 23
from each parent. In most cases of Down syndrome, a child gets the
extra chromosome 21, which equals a total of 47 instead of 46
chromosomes, which is what happened with Ben (The Nemours
Foundation: KidsHealth. 2012). Its this extra genetic material that
causes the physical features and developmental delays associated
with DS.
Currently there is no known cause of Down syndrome or why it
occurs. There is no way to prevent the chromosomal fault that

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Charlotte

causes it. There has been proven research about higher risks
though, as scientists now know that women aged 35 and older have
a more increased risk of having a child born with the condition (The
Nemours Foundation: KidsHealth. 2012).
At birth, Ben was of average size, but tended to grow at a slower
rate and remain smaller than his peers. The common characteristics
of Down syndrome that Ben displayed consisted of him having low
muscle tone, which lead to sucking and feeding issues, as well as
constipation and other digestive problems. As a toddler, and when
he was old enough to start kindergarten, Ben experienced delays in
his speech and self-care skills such as feeding, dressing and toilet
training (Turnbull, A., & Turnbull, H. 2001). Down syndrome affects
young children such as Bens, ability to learn in different ways, but
most have moderate intellectual impairment. Ben can, and does
learn, and is capable of developing skills throughout his life. He
simply reaches goals at a different pace, which is why its important
not to compare him against typically developed siblings or even
other children with the condition.
While some children with Down syndrome like Ben, have no
significant health problems, others may experience a vast range of
medical issues that require extra care. Many children born with
Down syndrome have a congenital heart defect. Children with DS
are also at an increased risk of developing pulmonary hypertension,
which is a serious condition that can lead to irreversible damage to
the lungs. All children with DS should be assessed by pediatric
cardiologists (The Nemours Foundation: KidsHealth. 2012). Another
common issue that children born with DS come across is problems
with their vision and hearing. Other medical conditions that may
occur more frequently in children with Down syndrome include
thyroid

problems,

respiratory

intestinal

problems,

obesity,

abnormalities,
an

increased

seizure

disorders,

susceptibility

to

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Charlotte

infection, and a higher risk of childhood leukemia (Hassold, T. &

Patterson, D. 1999). Fortunately, many of these conditions can be
treated.

The family of a child with a disability:

Some of the positive aspects that Bens family experience is that his
sibling,

parents

and

extended

family

have

become

more

compassionate towards people with differences, like Ben. Even

though his family has additional challenges to cope with, they lead
ordinary lives, due to finding appropriate resources to meet the
additional needs of Bens lifestyle.
With Ben having Down syndrome, it has drawn his parents closer
together because of the combined effort that is required from them.
Having had the parents form such a close partnership on the basis
of Bens development, has lead them to grow even closer than when
Ben wasnt in their lives. This doesnt always happen but their has
been some indication that marriage breakdown is less likely with
parents who have a child with Down syndrome, than the normal
population (Down Syndrome Education International, 2012).
There has been no evidence of harmful effects on Bens younger
brother Michael because he has grown up with Ben his whole life.
The early detection and diagnosis may have lead to this because
the parents were able to seek information, which helped them to
predict the future for Ben and find the most appropriate help.
Michael looks up to his big brother and acknowledges and accepts
that he is different. For Michael, this has constructed him with a
greater appreciation and compassion for diversity and especially
individuals with disabilities. Siblings are generally not at risk if there

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Charlotte

are sufficient resources to cope with any behaviour issues for

example the use of the social networks and support by both parents.
Siblings usually obtain their view of the sibling with Down syndrome
from their parents (Down Syndrome Education International, 2012).
Contrasting to Ben and his family, some families have a hard time,
showing signs of considerable stress, for a wide range of reasons.
Parents may struggle to cope if the child with DS or the siblings
show behavioural difficulties. This could lead to depression or health
problems for the parents (The Nemours Foundation: KidsHealth.
2012). If family relationships are strained, the family life will be
affected.
Bens parents, like many other parents who have a child with a birth
defect, experienced shock, denial, grief and even a bit of anger
when they found out Ben was going to be born with Down
syndrome. It was important for them to acknowledge their feelings
and talk about them with one another. They didnt need to see a
counselor or any social workers while he was a baby, as they dealt
with Bens condition very well. Being the parents of Ben, there were
not only added challenges, but also more rewards, as they were able
to celebrate achievements of Ben that are taken for granted by
typically

developed

International,

children

(Down

Syndrome

Education
2012).

At home, Ben is not at all seen as a burden. He makes a positive

contribution to the family and brings uniqueness to the household.
The impact he has on his mother and father are both positive, yet at
certain times challenging. They sometimes worry that Bens slower
development and learning disabilities will affect his teenage years.
They also worry because as children with DS reach their teenage
years, they can begin to have fewer social contacts and friends who
are not disabled. Knowing that potential isolation is likely, they can

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Charlotte

work with social workers to help Ben and his social/behavioural

skills. It has been important for Bens family to adapt well to Bens
lifestyle, so the family is not causing unnecessary stress. Financial
problems have been an impact on Bens parents, as he requires
more specialists visits. They are both employed though, which
reports less strain and more satisfaction. By Bens late childhood
and teenage years, his mothers employment will have had some
protective effects on her well-being. This may be because she will
have had more social contacts and access to support, respite from
the demands of the home and child, alternative interests and the
chance to appraise their situation with people outside the family
(Down Syndrome Education International, 2012).

Partnership between families, teachers and the

wider community:
Family relationships and partnerships emerge as an important
resource affecting all members. Having positive marital and parentchild relationships are a key factor of adequate support provision.
There are many different types of support available to Ben such as
special schools, social workers, psychology services, and parental
support.
Ben goes to a special school, which caters for students who have
special educational needs due to severe learning difficulties,
physical disabilities or behavioural problems. Special schools are
appropriate

for

children

who

suffer

from

profound

physical

disabilities, like Ben. This specialised setting ensures him safety and
comfort. The special school is an affective setting because all of
the educators receive training in standard disabilities, which ensures
that all educators and support staff who work with Ben, are fully

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Charlotte

versed in appropriate accommodation and treatment methods that

can be used to assist him (eHow Education, 2012).
Teachers of Ben, need to learn and know about his disability and
understand that developmentally, the child will be behind in
achieving their milestones. Teachers and other personnel of Ben can
give extra support by encouraging independence, make sure he
understands given tasks and that the rules are clear, speak directly
to him and reinforce what is said with facial expressions, pictures
and hard materials, give him time to process language and form
responses, use short and clear instructions, provide additional
practice to develop skills, set up regular and frequent opportunities
for social communication, plan individually for Ben so that his needs
can be provided for, and make sure Ben works with others who are
good role models. Using signing, symbols and print are effective
forms of communication strategies for Ben because symbols and
words can prompt production and be used to greatly increase
productive practice. Later they can be used to prompt and assist
him to practice more complicated utterances.
From birth, Ben has needed special services such as physiotherapy
and speech pathology, to help his development and learning. As a
baby, his parents knew it was absolutely vital for Ben to receive the
first class (Buckley, 1999) physical care and to receive services
like physiotherapy to try to keep motor progress near to normal
milestones, otherwise he would not have been able to grip objects
and explore. Ben has benefited greatly from extra help in his early
years, such as the speech pathology, physiotherapy and the
services provided in early intervention programs at kindergarten.
Early intervention programs gave Bens parents the chance to learn
about the special needs of him and were shown different ways to
help him learn.

EDAC225: Assessment Task 3: Discussion Paper (45%)

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Charlotte

It is important for Bens home environment to always be a caring

and safe place where he feels comfortable and secure. He benefits
from lots of stimulation through many types of experiences with
different

people,

places,

toys,

sounds

and

feelings,

each

contributing to his development (W. Gordan., J. Panagos. (1976).

Bens

parents

are

constantly

encouraging

movement

and

exploration, assisting with building fine motor skills. Bens parents

accept that he develops at his own speed and in his own way, and
understands that often activities need to be repeated before he can
do them himself.
Ben benefits from the partnerships that are formed between him,
his parents, his teachers and therapists as they all value him in the
same way and work collaboratively to give Ben the highest quality
of life.

Application to professional values:

From a family systems perspective, the relational life of families
provides the central ecological context in which children are
nurtured (Seligman, M. & Darling, R.B. 2007). The family system is
influenced by the attributes each individual brings to family
relationships as well as by family members perceptions of those
attributes. The birth of a child with Down syndrome is likely to affect
the family system in many ways, such as the cultural views that
guide parents perceptions about a developmental disability (Lorenz,
S. 1996).
According to the family systems theory, the family is a dynamic
entity

with

unique

characteristics

and

needs

but

is

also

compromised of individuals who have their own unique needs and

traits (Turnbull, A., & Turnbull, H. 2001).

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Charlotte

The family systems theory suggests that individuals cannot be

understood in isolation from one anotherfamilies are systems of
interconnected and interdependent individuals, none of whom can
be understood in isolation from the system (GenoPro, 2012).
In every family, each member plays a significant role in contributing
to the familys happiness and environment. Maintaining balance and
consistent pattern of behaviours is a factor that can lead to a
balanced family system (GenoPro, 2012).

As a pre-service teacher, I have already created and found what is

to be of high value in an early childhood or primary school setting.
Working with families who have a child with a disability will be both
challenging and rewarding. Challenges may arise when my values
conflict with the families values, as the partnership may be more
difficult to maintain. In saying that, I believe its extremely
important for all opinions to be voiced and that the best services are
available for each child with a disability.
I believe that relationships between parents and professional are
often considered to be most effective when they represent true
partnerships (Morrow, G., & Malin, N. 2004). Their needs to be a
mutual respect, trust and honest, mutually agreed upon goals and
shared planning and decision making.

References:

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Charlotte

Buckley, S. (1999) Language development in children with Down

syndrome and reasons for optimism. Volume 1. London.
Buckley, S. & Sacks, B. (2001) An overview of the development of
children with Down syndrome (5-11 years). Down Syndrome
Issues and Information. London.
Down Syndrome Education International, 2012). Issues for families
with children with Down syndrome. [Fact sheet] retrieved from
http://www.down-syndrome.org/information/family/overview/?
page=3
eHow Education. (2012). The Advantages of Special Schools for
Students With Disabilities. [Fact sheet] retrieved from
http://www.ehow.com/list_5977354_advantages-special-schoolsstudents-disabilities.html
GenoPro. (2012). The Family Systems Theory. [Fact sheet] retrieved
from http://www.genopro.com/genogram/family-systems-theory/
Gordan, W. & Panagos. J. (1976). Developmental Transformational
Capacity of Children with Down Syndrome. Colarado.
Hassold, T. & Patterson, D. (1999). Down Syndrome: A Promising
Future Together. Wiley-Liss Inc, New York.
Lorenz, S. (1996). Children with Down's Syndrome - A guide for
Teachers, etc. David Fulton: London.
Morrow, G., & Malin, N. (2004). Parents and professionals working
together: Turning the rhetoric into reality. Early Years: An
International Journal of Research and Development, 24, 163-177.

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Charlotte

Seligman, M. & Darling, R.B. (2007). Ordinary families, special

children: A systems approach to childhood disability (3rd ed). New
York, NY: The Guilford Pres
The Nemours Foundation: KidsHealth. (2012). About Down
Syndrome. [Fact sheet] retrieved from
http://kidshealth.org/parent/medical/genetic/down_syndrome.html
#
Turnbull, A., & Turnbull, H. (2001). Families, professionals, and
exceptionality: Collaborating for empowerment (4th ed.). Upper
Saddle River, NJ: Prentice-Hall.