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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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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