Introduction
Children
with special needs receive various responses from families and communities all
over the nation. There have been many attempts to reduce the discrimination and
improve these children’s quality of life. Trisomy 21, or Down syndrome, in
particular has experienced discrimination fueled by ignorance that needs to be
reversed. A general approach that is taken to improve these children’s lives is
the use of individualized therapy sessions, separated classroom settings, and
distinctive learning goals (1). There is only so much that these interventions
can accomplish in the physical, mental, and social growth of a child with Down
syndrome. Here, we will examine flaws with these types of programs and how to
improve the details to reach a more favorable outcome in developmental
abilities and learning outcomes.
Current
Approach
There
are numerous programs throughout the U.S and the world that are dedicated to
the wellbeing and health of children with Down syndrome (1)(2). It is very important
to ensure their overall health is assessed and that they are not at risk for
heart and growth complications. Clinical and classroom settings that set these
individuals apart from those without developmental delays are not beneficial
after a certain age. Separated facilities should not be the lifelong focus for
individuals and families with Down syndrome. As they grow older and remain
healthy, they develop social and interpersonal needs as well. These are clearly
represented in Maslow’s Hierarchy of Needs and it is completely logical that
this would also apply to individuals with Down syndrome (3). Many approaches
that are in place today focus only on the physiological and safety levels,
which are helpful, but severely restrictive in lifestyle. The focus now,
especially for adolescence, should be the belonging, the self-esteem, and the
self-actualization levels. This really is just as important, if not more important
to children with Down syndrome in order to feel like they are capable of the same
things that anyone else is. Here are a few ways that many current approaches do
not support these long-term needs.
Argument
1
When
a parent discovers that their child has Down syndrome, whether it be prenatally
or at the time of birth, they often feel like this is their personal problem
and that they have to do something about it right away. Fortunately, the option
of termination is becoming much less popular, but it does still exist (4).
Parents and families make assumptions about what their child’s lifestyle and
even their own lifestyles will be like throughout the child’s life. There are
aspects of Leon Festinger’s theory of Cognitive Dissonance playing a role here.
This theory states that an event that brings about a feeling of discomfort causes
someone to want to take action in order to bring back a sense of comfort and
balance (5). Parents may feel that the presence of Down syndrome is something
that has disturbed their idea of consistency and that they need to adjust it to
make it go back to normal. It is perfectly reasonable for a parent to want to
take action to improve their child’s life, but sometimes over-action or
over-care can be just as detrimental to the child’s future. However, parents
and families often receive skewed messages of how to handle and work with a
child with Down syndrome and that it should be particular and distinctive from
a child without a developmental delay. This pre-conceived notion that special
care is needed is often exaggerated and does not give enough credit to the
child. When children are given too much extra attention and special care that
other children their age do not receive, it creates something of a barrier
between them and their peers. This is not the goal; we want children with Down
syndrome to feel as if they are not treated differently and that they can
accomplish what anyone else can. This presence of support and motivation is
helpful, but it must come with appropriate motives. There are definitely
benefits that come from these programs, but they are only part of what should
be going on.
Argument
2
Another
flaw with these approaches is the pressure that is put on parents to fix
things. Health care professionals and other organizations are using some seemingly
inspirational techniques from the Theory of Planned Behavior. These ideas
include enforcing certain attitudes upon people about a behavior to change and
what the perceived norms are of doing that behavior. These are combined with
intention and self-efficacy, and it assumes that behavior change will automatically
be made (6). The idea of treating the growth of a child as the behavior to
change is not appropriate. Parents often feel like they can fix this problem
and lessen the negative effects that it has, or even use the technique to
aspire to be in the norm. A few flaws with this theory are that it is encouraging
parents to make a change in their child’s life with the wrong purpose, and it
is not very useful for long-term behaviors or actions. This is precisely the
case with children with Down syndrome. For a parent to want to “fix” their
child based on perceived norms about what their child should be like is having
a skewed intention of what is best for them. The intention behind the use of
this theory is admirable, but the information being put across is not what we
want parents to hear and relate to. This would involve parents being adamant about
sending their eight-year-old child to a specialized classroom that is separate
from everyone else and that only includes other students with developmental
delays. The intention is present and there is self-efficacy for doing the right
thing, but the deprivation of being around other children is definitely disadvantageous.
The individualization of this approach is what constricts the mental and
developmental growth of these children.
Argument
3
Finally,
those who implement these programs and health plans for parents with Down
syndrome realize that taking action and continuing to take action throughout
their child’s life is a way of being in control over something that happened
against their will. Down syndrome is not a desired outcome, so this allows for
them to be able to take some action and feel good about it. The programs and
systematic interventions intended for children with special needs to undergo
are restrictive of long-term goals and benefits. Being able to make a
difference in how one’s child is raised and treated may give the illusion of
control. This is a proposed theory by Ellen Langer that explains how people
tend to prefer feeling like they have control over a situation even when that
may not be the case (7). However, by doing so and trying to control and mediate
the experiences a child growing up with Down syndrome has, it really ends up
taking away from the more positive practices and skills that they could learn
on their own with less interference. As with the majority of parents, having
control over teenagers is desirable but quite difficult. Adolescents with Down
syndrome should be able to experience freedom to explore and be able to learn
from these same environments. Not only will this improve their social skills
and self-esteem, but they will thrive in the situations they are put in because
they will be able to work and solve problems more efficiently, thus boosting
their self-esteem.
Overview
All
in all, individualized programs have good intentions and they are appropriate
to ensure the health of a child with Down syndrome early on. However, there
comes a point when these programs are restrictive and do not help children
advance as far as they could if they were in more typical settings. By using
influential explanations of behavior change, the skills that these children
learn are constrained rather than allowed to flourish. Shifting these kinds of
program to using more social models will allow more growth among adolescents
with Down syndrome and their peers.
New
Intervention
As
a typical child grows older, he or she ideally develops friendships and
experiences that serve as pivotal social situations to growth and learning.
Preventing a child from experiencing these necessary components of childhood is
a great disservice to their social skills, particularly in a child with Down
syndrome. Christopher Kliewer helps explain that there are so many factors that
can change the way they experience the world and the opportunities that they
are given (8). One way to do this would be to ensure that children with Down
syndrome and other special needs are able to socialize and relate with other
children that can help advance their development. Our new intervention will be
based primarily in classrooms of elementary schools, middle schools, and even
high schools. In order for them to flourish socially and psychologically,
inclusion is key. Students with Down syndrome will have some individualized
attention to assist with their academic success, such as reading, writing, and
mathematics, but they will spend a large portion of their day with the same
schedules and classroom time as everyone else. This integration will not only
help them learn better and adapt to their environment, but their classmates
will be able to collaborate and work with them in order to provide a stronger,
more close-knit environment. In addition, it is really important for
adolescents with Down syndrome to not feel cast aside or alienated from their
classmates. Setting all the children on a more socially balanced level will
allow them to feel as if they have equal opportunities to succeed and
participate. This intervention of inclusion and integration will help these
individuals to feel assisted based on their needs, but with the freedom to explore
and expand their limits and goals.
Defense
1
The
first flaw in current approaches was about the message being given to parents
to do the right thing and take steps to fix the problem that they have been
presented with. The parents care very much, but we need to redirect this energy
in the proper direction for something more positive. Individuals with Down
syndrome are capable of many things, so long as they are given the chance. Our
intervention will have an effective way of showing parents a different
perspective on what their child’s life can be like and how Down syndrome does
not have to obstruct their dreams. This message will be particularly effective
when it comes from someone who means it and understands what a parent’s role
is. It should also be someone that parents can connect with and look up to for
comforting guidelines and encouragement. For this, we would use Down syndrome
advocates Eva Longoria, with her own organization, Eva’s Heroes, Jamie Foxx, who
is a stakeholder at the Global Down Syndrome Foundation, and Lauren Potter, the
Glee actress with Down syndrome (9). Longoria
and Foxx both have sisters with Down syndrome and they have had personal
experiences with being told to take the assumption that their respective
sisters would not live fulfilling lives, but they were given countless
opportunities anyway and they have accomplished great things and lead happy
lives (10)(11). This is the message we want to portray to encourage parents who
may not know what Down syndrome entails and how to best “fix” it. Potter can go
further to explain what her lifestyle is like and the opportunities she
received throughout childhood that help her thrive. With these messages, we are
employing Robert Craig’s Communication Theory, which simply shows that if an
audience feels connected with the communicator, they will be much more likely
to take the information to heart and understand it better (12). Seeing these
celebrity advocates will have a familiarity factor and parents will be better
persuaded to enrich the opportunities for their own child.
Defense
2
The
next step we want to take is to fix the issue that stands regarding making a
change to improve their child’s life. Instead of using an individual-centered
intervention based on the Theory of Planned Behavior, we need to look at
society and the environment and adjust how they function in those situations. We
will use the Social Expectations Theory founded by Joseph Berger, which helps
our goal by showing that a behavior is best formed by being done in large
groups that can be imitated (13). By spreading our campaign advertisements,
billboards, and posters all over the nation, we will be able to inform many
people and transform the idea of inclusion of all people with special needs.
Down syndrome will be better known and there will likely be much less
discrimination. Changing the norm is really going to speak to parents and
families and help them feel more comfortable with the idea of raising a child
with Down syndrome. It will also improve the ways that current approaches
attempt to solve the problem of having to take action right away. This campaign
will help change people’s mindsets, which will change their behavior, which
will spread very quickly. This process will take a snowball effect and it will
be so rewarding for parents to feel secure about the ambitious lifestyles their
children can have and that they do not have to be limited in any way.
Defense
3
Finally,
we want to completely reverse the meaning of control. Parents should definitely
be able to experience control, but so should their children. As they grow
older, they are already aware that they are different from other people, so
this should not be reinforced by the system. The environment needs to be
welcoming and accepting of everything they want to do. The control that was
dubbed an illusion will now become more concrete with the implementation of our
campaign and there will be confidence in what they can accomplish. The idea of
this control will duplicate that of the progress Down syndrome has made in the
nation in the last 50 years. Michelle Sie Whitten, the Executive Director of
the Global Down Syndrome Foundation, illuminates this timeline and how things
have changed. Prior to the 1980’s, individuals with special needs in general
were often institutionalized just for being different and this brought about
the assumption that they were not capable of living like “normal” humans. It
was assumed that it was impossible for them to carry out regular activities
like eating, dressing, communicating, and living past 28 years of age. After
these practices were considered inhumane and the focus shifted, individuals
with Down syndrome were living at home, attending schools, and living in
everyday society. This dramatically increased the IQs of people with Down
syndrome, life expectancy to about 60, and many are educated and employed (14).
This is outstanding progress that serves as a more extreme example of what is
being done today; these children and adolescents should no longer be limited to
confined classrooms and other settings where they are not integrated with the
rest of society. There is clearly vast potential among these individuals that
we need to expose and share with families and communities everywhere. This will
be the real control that not only we should have, but that we can give to those
with Down syndrome who have goals and desires of their own.
Conclusion
It
is clear that individualized methods alone are not helping children with Down
syndrome reach their full potentials, and that viewing them as having a
developmental disability will only hinder their abilities. This group-based intervention
will help change that stigma and make the population realize that they can be
integrated into normal school systems and be treated with the same amount of
respect and knowledge. The initial push is beneficial for them when they are younger,
but parents and families must feel more optimistic about their lives. Integration
and acceptance into society will provide that guidance for all individuals with
Down syndrome to reach new limits and accomplish more than anyone thought they
could.
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