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All children have unique social needs that impact their daily lives. Some children have to be the center of attention, while others prefer to be alone, and still others fall somewhere in-between. As they grow, children learn socially acceptable behavior along with what their personal preferences for social interaction are. Most children begin learning what is considered socially appropriate behavior in the home.
Parents and siblings, through modeling behavior in interactions with others and through specific interactions with the child, teach the child what the family considers appropriate behavior. For example, if siblings give in to the child every time she or he screams, the child is being taught that the appropriate way to get what he or she wants is to scream. While different children might desire different things, the interaction is teaching the child that this is the appropriate behavior to get what he/she wants. The same is true of other types of social activities including resolving conflict, gaining attention and making friends. Children learn by observing others. These lessons learned at home continue to be learned within the educational setting. As the child's world expands to include more and more varied social situations, the child learns what society feels is appropriate behavior in each circumstance. As the child grows, she / he learns about himself / herself as well – the types of social interactions preferred, the most comfortable types of interactions with people, and the type of people he / she would prefer to be around. |
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Children also have a variety of stressors in their lives, as well as a variety of coping mechanisms and varying levels of coping ability. Stressors that affect the family often become stressors for the child. For example, financial difficulties, problems with siblings or parents' work stresses can frequently become stressors for a child that may or may not be reflected in the child's behavior at home or at school. All children deal with some amount of stress, some more than others, and each child may handle stress in a different way. While some students might handle the divorce of parents rather well, others will be completely incapacitated by this event. Some might withdraw or seek time alone. Others might lash out. Still others may not change their outward behavior at all. Each child may handle the situation differently. This may be for a multitude of possible reasons including type of familial support, the child's personality and the maturity level of the child. Different children will require different amounts or types of help to handle the stressors that arise in the child's life.
Just as social interactions are learned, the way a child handles (or doesn't handle) stressors is also learned. These skills are first learned within the home environment in much the same way social behaviors are learned. Some students will come to school equipped with a set of coping mechanisms already established and will simply build on these skills in the educational setting. Others will not be as well prepared or have what are frequently considered inappropriate coping mechanisms (e.g. bullying, fighting or passive aggressive behavior). They will have to improve their skills or learn different coping strategies to use while in school. These skill levels and skill sets, in combination with the child's personality and what has been learned as appropriate social behavior, are what makes each child's emotional and social needs unique.
Children with disabilities are no different. They learn what is considered appropriate social behavior through their interactions with others around them and have a variety of personalities and preferences for social interaction. They also have a range of stressors in their lives and learn to handle them the same way other children do (observation, modeling, and social interactions). And, like non-disabled children, disabled children will come to the educational setting with different levels and types of coping skills.
The difference between children with and without disabilities, in terms of behavior, frequently consists of the information that has been relayed to the child, not the way it has been taught. In other words, children with disabilities frequently get different messages from society indicating what socially appropriate behavior is and how to cope with various situations. For example, those around the disabled child might accept certain behavior, such as throwing things to get attention that would not be accepted from a non-disabled child. While positive reinforcement of appropriate behavior (or negative reinforcement of inappropriate behavior) might be used to teach the non-disabled child what is appropriate, refraining from correcting this same conduct in the disabled child gives the message that what is being done is socially acceptable. This training, in combination with the messages children receive about how society feels about people with disabilities, creates added and unnecessary stressors for children with disabilities and tends to create different outcomes for them socially.
Just as non-disabled children learn how society feels about them, disabled children learn that they are considered different and “wrong.” They discover this cultural attitude through a variety of social experiences. When they have to ride a different school bus than their non-disabled peers, when doctors discuss treatment to “fix” or alter them, when they watch TV and do not see disabled persons, when video games do not include disabled characters, they receive the message that this culture feels that people with disabilities are “defective,” “less than,” and a problem (Davis, 1995; Longmore, 2003; Shapiro, 1993). Non-disabled children receive these same messages as well. When they see children with disabilities in a “special” classroom or riding a different bus, for example, they are being taught that disabled people are different and “different” in this society is not considered culturally acceptable. Therefore, all children are being taught culturally specific messages about disability and what is an appropriate response to disability.
Different children react to these cultural messages in different ways depending upon a variety of factors. Both disabled and non-disabled children tend to internalize these cultural messages in much the same way that other social messages are internalized. While non-disabled children may experience affirmation of their status in society from these situations, children with disabilities have their lack of status in the population affirmed. Although everyone in society receives the same basic cultural messages, not all people will accept or respond to these social norms in the same way. While some may readily accept societal beliefs, others will not and, frequently, how a child is taught to think about societal norms affects the child's responses and behaviors.
As children of other minority groups who frequently receive negative messages about themselves may experience stress, children with disabilities may consciously or unconsciously experience stress related to cultural messages. This experience can cause depression and a host of behaviors or desires that may not be readily viewed as problematic by the larger society (e.g. an African American girl who desires blues eyes and blonde hair or a deaf child who desires to communicate as hearing people do). These desires are the way some children show that they have internalized the larger social problem of discrimination and prejudice. Others may exhibit self-doubt when it comes to new social environments. Still others may be more aggressive, try to please everyone or display signs of depression. Still others may become involved in social activism, the arts, athletics or some other outlet that allows them to express themselves and handle the situation in another way.
In this chapter, we will examine some of the ways adults can help children with disabilities learn the social skills they need in society and we will suggest ways to alleviate some of the social inequalities that exist in most schools across this country. While all children need to learn appropriate social behaviors and how to deal with stress, these aspects of a child's developmental process are frequently ignored or are not a part of a disabled child's educational experience (either in or outside the classroom). The following are some suggestions to help the disabled child learn to socialize with her or his peers, to cope with stress, and to deal with discrimination when it occurs.
The following suggestions are specifically related to children with NMD. They are not a complete set of suggestions nor will they necessarily work for every child in every situation. Like all children, children with NMD are unique individuals from unique backgrounds with unique sets of skills and experiences. These are simply a few ideas that may elicit other thoughts and solutions that may work for the unique situation that the student with NMD is encountering.
Emotional development is paramount over almost all other aspects of growth in childhood. We can see children grow up physically and observe their growing mental capacities, but they are also gaining self-control and skill in interacting with others. As stated in the introduction, these skills are needed and learned by all children, including children with NMD. While the stressors may be different for disabled children with NMD, these children still need to develop the skills that will help them live in society.
As a group, children with chronic illnesses and physical disabilities are at risk of experiencing social-emotional difficulties. In a review of the clinical literature, which has principally focused on myotonic muscular dystropy, Livneh & Antonak (1994) report that children with muscular dystrophy experience psycho-social reactions to their social environment including: (a) codependency related to the over protectiveness of parents; (b) social isolation due to negative attitudes of peers and shame about their physical appearance; (c) negative body image and self-concept; (d) feelings of helplessness due to increasing dependency on others; (e) anxiety over impending death; |
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However, when adults with Charcot Marie Tooth disease were interviewed about their school and social experiences, many reported that they became more introverted in school and that their relationships with peers were negatively affected by their introverted behavior (Goldfarb & Shapiro, 1991).
This picture is not necessarily as bleak as it may appear. Although research with children with chronic illnesses and physical disabilities indicates that, when, along with unequal opportunities, there are inadequate levels of social support from family, peers, and teachers, the children may experience more depressive symptoms. When children with disabilities or chronic illnesses experience adequate levels of social support and a more inclusive environment, they exhibit significantly fewer symptoms of depression. In one study, 153 mothers of children (ages 4 to 16) with a chronic physical illness or disability (including juvenile
diabetes, juvenile rheumatoid arthritis, chronic obesity, spina bifida, and cerebral palsy) were asked about the behavior of their children and the family environment. Those children with physical disabilities or chronic illnesses who had little family support and little peer support had more problems with disruptive behavior. Those with little peer support had more problems with depression and anxiety (Wallander & Varni, 1989). Teachers, parents, and peers play a critical role in the promotion of equal social opportunities, social support and the acquisition of coping skills for all children. As stated previously, all children experience stress and children with disabilities are no exception. While disabled children have to cope with the same types of stressors as their non-disabled peers, they also have to contend with stressors specifically related to being a person with a disability in a discriminatory society. For example, a child may not only have to deal with the financial stress that paying for a field trip could place upon the family, but also may have the anxiety and frustration of knowing that, even if the trip is paid for, he/she still may not be able to go because the trip has not been made accessible by the school (lift-equipped transportation not provided, dietary needs not being met or the venue not being accessible). These types of stressors combined with being in a situation of having to take on adult responsibilities (understanding and explaining the NMD to others, being responsible for medication or the use and care of high-priced adaptive equipment) create a unique situation for children with disabilities. While, on some level, society expects people with disabilities to be perpetual children (Shapiro, 1993), children with disabilities have to take on some fairly adult responsibilities and frequently are not provided the opportunity to learn the skills needed to successfully accomplish the tasks without undue stress. Later in this chapter, we will come back to the issue of teaching children how to cope with the types and levels of stress experienced by adults. Not only is it essential to recognize the types of stressors a child might be dealing with, it is also important to understand the development of coping abilities and the need for social-emotional support for children. As stated before, stress impacts individuals differently depending on many factors, including differences in coping ability and the availability of social support from friends, family, and the community. Furthermore, coping ability develops within a broader context of emotional development. In order to better understand the experiences of children with NMD, it will be helpful to consider their emotional needs within the context of normal development as well as within the context of disability. |
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According to western psychology, one of the significant emotional tasks of childhood is the development of a sense of mastery. According to Erikson (1963), in young children and children in middle childhood these tasks of development include the growth of autonomy, initiative, and industry. Children need to cultivate a sense of confidence in their ability to initiate their own actions and ideas as well as in their ability to tackle major societal tasks, such as schoolwork and the development of friendships. Children with NMD live within the paradox of losing physical independence while at the same time needing to develop self-reliance and mastery. Because of this paradox, parents and teachers will need to be sensitive to issues related to independence, and provide opportunities to experience mastery and self-reliance. To change the environment, parents and teachers need to shift their focus from one that impedes certain children's success to one that promotes the achievement of all children by encouraging the interconnectedness of individuals within society. Individuals |
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within this society interact in collaborative ways in many instances. Couples tend to collaborate on decision-making processes whether deciding about buying a house or deciding how to handle the in-laws. Co-workers assist each other to successfully complete a project for a client. Children work together to build a fort out of discarded items or to create imaginary worlds in which to play. However, teachers usually emphasize competition and self-reliance within the classroom and avoid interdependency. This emphasis must be shifted in order to help children with and without disabilities develop into capable adults. There are several ways educators can shift the focus of skill acquisition within the classroom.
Outside the classroom, this shift in values can be promoted through a variety of techniques. For example, by providing accessible activities such as board games, an accessible jungle gym, computer or video games for all children at recess, children both with and without disabilities can choose from a wider range of activities. Asking the child with the disability what types of social interests or hobbies in which she or he would like to participate might be a good way to begin the inclusion process. The more choices children have in play, the more opportunities they have to socially interact and learn from one another. The more children with and without disabilities interact, the more likely they are to create friendships and positively reinforce one another's social skills.
Of course, modeling and positive reinforcement outside the classroom by adults is also important. For instance, when preparing field trips, teachers can provide this focus on interdependence by considering accessibility issues such as accessible transportation and accessibility of the venue or activity. When this is not done as part of the planning process, children receive the message that difference is not valued, and that children with disabilities do not belong in social settings. Children will act according to what they have been taught; children with disabilities will lose self-confidence and feel stigmatized and children without disabilities will avoid and alienate their disabled peers. Including these aspects of the field trip in the initial planning process (rather than as addenda or not including them) normalizes these facets of life, and consequently reinforces the value of each individual. As access, interdependency, and the valuing of difference become the norm, children with and without disabilities will become more adept at articulating these values to their peers, family members, and people within the community. As children reach adolescence, they will be more inclined to accept themselves and others as unique individuals with both strengths and weaknesses.
According to Erikson, the key tasks of early adolescence are forming identity and developing broader social roles (1963). Part of this process is accepting one's unique strengths and weaknesses. According to Elkind, this requires "the establishment of a stable and resilient personal identity" (1978:159). This period is also associated with social conformity, an intense interest in being accepted by one's peer group, and establishing both social and psychological independence from one's parents. Of course, cognitive abilities and skills are bring broadened as well.
For youth with physical disabilities, such as NMD, adolescence may present unique challenges. While some adolescents with NMD may need to rely more on personal care attendants, they also require greater independence both socially and psychologically, just as their non-disabled peers do. Like other teens, it is important to provide opportunities for adolescents with NMD to engage in a variety of social activitiess. More diverse and expanded public responsibilities, such as leadership opportunities and community involvement, should be available for all students to explore and educators and parents should encourage teens to engage in a variety of activities. These opportunities are important for the development of the cognitive, social, and emotional skills needed for coping and adjustment to the transition from childhood to adolescence and on to adulthood. These types of prospects also provide teens with leadership skills that can transform into job expertise and give adolescents the opportunity to begin creating social networks.
Students with NMD should be encouraged not only to participate in the community and to accept leadership opportunities, but also to participate in social activities such as school dances, school sporting events and dating. These opportunities provide teens with the chance to socialize with peers in an atmosphere that is less supervised and controlled, giving them the independence they need to grow into adulthood and providing necessary stress relief. Like their peers, teens with disabilities need these types of outlets to gain independence from their parents, to learn adult socialization skills, to retain and gain friendships and to relieve stress. Making sure school sponsored events are held in accessible venues is one way that educators can let students with disabilities know that they are welcome and model for students without disabilities that inclusion, not exclusion, is a valued norm in the community.
As stated previously, children and adolescents with disabilities frequently experience extra stressors due to a variety of factors. Some of these additional pressures a child with NMD might experience are: 1) discrimination within the school and community towards people with disabilities; 2) coping with responses from educators and peers because of frequent absences for medical appointments; 3) responding to prejudicial or discriminatory comments of adults and peers; 4) pain and/or fatigue management; and 5) dealing with the family's response to disability. These and other strains are common extra stressors for children with disabilities. They are also pressures that are not experienced at a young age by most people and, therefore, the skills to cope with these adult strains are often not taught to children. Consequently, recognition that some children are experiencing these levels and types of stress may not occur to the adults and, in turn, coping mechanisms to handle adult stress are not promoted within primary and secondary education. The coping demands and stressors that children and adolescents with NMD face can be viewed in two different ways. Like the view of child development that focuses upon physical ability, independence, and competition, these extra stressors can be viewed as simply problematic and, circularly, stress producing. Or, they can be seen as an impetus to teach adult coping skills to children so that they can deal with adult levels and types of stress. |
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These are abilities that not all children may need. However, beginning to teach children these techniques at an early age does two things: 1) it gives all children an opportunity to acquire skills that they can use when the need arises; and 2) it allows children who do need these abilities to acquire them in a non-stigmatizing manner. If the objective is to help children, then the most productive approach to the situation is to acknowledge the presence of these extra stressors and to teach children effective ways of managing stress and coping with societal pressures that result.
One of the biggest obstacles for children with disabilities who are learning healthy coping skills is the lack of recognition of their worldly experience by society, family, educators, and peers. For example, if a child with a disability is called “retard,” the child's experience of the event should be acknowledged. This is similar to a child of color dealing with a racial epithet and should be recognized as verbal abuse and prejudice in the same manner. By doing this, the situation is acknowledged and the children who are using epithets can be corrected.
While diversity programs can help alleviate this issue within the classroom, children with NMD will also be experiencing this type of behavior from adults and children in their everyday experiences. Unfortunately, children with disabilities often do not report these incidents to adults for many of the same reasons that physically abused children don't report the abuse – because they don't know how to, they are afraid of the response they'll receive or because the response in the past from adults and peers has been negative. By not trivializing these very negative encounters, one is recognizing the child's feelings and communicating to the child that he/she is a person with whom they can safely discuss negative experiences.
While recognition and empathy are good starting points, ultimately, the child has to learn how to handle situations when they occur. Brainstorming is an effective adult coping mechanism that can be taught to a young child in order to prepare him or her to deal with a situation before it happens or to plan for the next time it does happen. For example, the child may come to an adult because an epithet (like “moron”) or a derogatory comment (such as, “Your parents should have put you out of your misery.”) was directed by an adult at the child. First, the adult should acknowledge that what happened to the child was discriminatory and praise the child for having the courage to report the incident to an adult. Second, the adult should listen to the child. Some children will simply want consolation and recognition that the person was acting inappropriately. Depending upon the child's age, personality, and maturity level, this may be all the support the child needs or wants. Other children may want more support or may need help figuring out how to respond if this happens again. To help alleviate feelings of frustration or loss of a sense of self-worth, allow the child to discuss the situation and help him/her brainstorm possible responses to the experience. These discussions can be one-on-one or in a grou, depending entirely upon the child's preference. Questions can be asked of the child to help him / her to articulate the desired end result. For example, with the above scenario, one might ask the child what he/she would like to accomplish with a response (e.g. education or correction of the adult, self-empowerment) or how she or he would have liked this experience to conclude.
Different options should be explored and a discussion of the pros and cons in different situations can help a child learn how to analyze events and come up with multiple ways of dealing with a incidents. With the above example, a child might think to respond with a sophisticated joke, or by telling his/her parents, or simply by walking away. Depending upon the child and the circumstance, each of these responses could be appropriate and could empower the child in a potentially disempowering situation.
The same type of technique could be used to help the child learn to problem solve with more tangible, physical forms of discrimination such as inaccessible bathrooms or information in non-accessible formats. While young children may need assistance in learning how to advocate for changes in the environment, children should participate in the brainstorming process to come up with solutions. This is a natural part of the IEP/504 Plan procedure, but can be used in and outside the classroom environment as well. For children who need it, shadowing an adult might also help the child develop the skills to both articulate the situation and suggest solutions. Learning these abilities as children will not only help the child develop effective coping skills, but will also empower the child by making him or her a more effective agent for change and provide him or her with leadership expertise that will help later in life.
Behavioral changes in children with NMD, as in other children (e.g. becoming more or less outgoing or paying less attention in class) are potential signs of stress or depression. However, they can also be signs that the student is just not interested in school that day. As with any individual, the best way to find out is to ask. Depending upon the child, this could be done in a variety of ways. For example, one may simply ask, “What's up?” or “Are you feeling OK?” or “How's it going?” The point of asking should not be to get an answer but rather to provide an opportunity for the individual to express him/herself. By asking the question and showing genuine concern, you are letting the individual know that you are concerned and would like to help if you can.
If you ask a question, be prepared to actively listen to the response. Every person is different and, while some may verbalize what is going on, others may use different forms of communication such as body language or facial expressions to convey what they mean. Some children may also not be able to articulate clearly what is occurring while others may be very coherent. Ask questions when you aren't certain about what the child is saying or make “I statements” such as, “I think you're saying that…. Am I understanding you correctly?” This will not only help you figure out how best to help the child, but also let the child know you are paying attention. While not all children may have the skills to effectively articulate what is happening, most children will know if an adult is really listening. As a result, utilizing active listening techniques can be a way of ensuring continual honest and open communication between adults and children.
There will be times when a child does not wish to speak to an authority figure. Therefore, alternative resources such as a support group, organizations created by and for disabled people or specifically for disabled teens and teen chat-rooms are examples of venues that the child should have at his or her disposal. Providing a child with access to adults and other children with disabilities creates opportunities for mentorship and access to others who may be able to provide guidance and support. While integration should be the goal for all children with and without disabilities, providing opportunities for children to identify with a particular group of people can allay feelings of isolation.
Educators should be aware of various programs and organizations (local, regional and national) that children and families can utilize for support and networking, as well as places for gathering information. For example, a child interested in sports may be given contact information for local sports and recreation activities and facilities or national organizations, like Disabled Sports USA, that the child might join or contact for more information. There may also be local mentoring programs such as Big Brothers Big Sisters of America for children with and without disabilities in which the child can participate. Also, having the contact information for larger organizations such as the Parent Project Muscular Dystrophy, Muscular Dystrophy Family Foundation, the World Association of People with Disabilities, and the American Disabled for Attendant Programs Today will provide families and children with the opportunity to network and gather information and assistance in a non-medical environment.
Depending upon the type of disability and when it was acquired, the child or adolescent with a disability may also experience stress that is related to adjusting to his or her disabled body, to the nature of the disability (if it is progressive, for example), to her or his own mortality or to the way she or he has internalized society's perceptions of people with disabilities. As with everything else, children will respond differently in different situations. Therefore, to more effectively help the student approach each child based upon the specific personality and maturity level of the child, rather than from perceptions of a particular disability.
We are a society that is overweight (CDC, 2004) and is increasingly more disabled (Shapiro, 1993). However, the images we portray of the “normal” or “correct” body type is that of the supermodel or pro-athlete. Consequently, many children in this culture have problems with the way their body looks in relation to society's portrayal of it . For children with disabilities, this problem is compounded by the consistent message in mainstream media that the disabled body is an unwanted, worthless, and problem body (Davis, 1995; Longmore, 2003; Shapiro, 1993).
Diversity programming that includes not only cultural differences, but also a discussion of the value of different body types can help alleviate some of the stress caused by the barrage of imagery most children experience. This type of curriculum will provide an opportunity for all children in the classroom to attain a healthier self-image and a respect for difference. As stated previously, this will lessen the likelihood of bullying and name-calling due to differences in body type and will promote a more positive environment for all children. This programming could be complex or basic depending on the needs of the group of children. Learning to appreciate and accept different appearances can help lessen the likelihood that children will develop problems related to a poor self-image.
Including images of successful disabled people can help children with a disability have a positive self-image and can promote a different view of disability among their non-disabled peers. Examples such as Christopher Reeve, Ray Charles, Helen Keller, and Franklin Delano Roosevelt can provide children with a different perspective of disability that includes adjectives such as capable, and strong. Inclusion of this type of programming will promote self-esteem and a positive self-image in all children, teach children to value difference, and help eliminate negative social behavioral problems exhibited in childhood (e.g. bullying, teasing, depression).
Like most other disabilities, neuromuscular disabilities can be invisible, where the person with a disability will not “look” impaired. Symptoms such as fatigue and pain are not visually discernable. This can be a problem for the disabled person, since people in general assume all is well when the problem isn't visible. For example, a person's complaint of fatigue may be written off as an exaggeration or a complete fabrication. Denying and ignoring a very real condition contributes to a lowering of the disabled person's self-esteem, creates distrust among the parties involved, and unnecessarily increases stress levels for the individual with the disability.
As family members and educators of a child with NMD, it is essential for the child's well being that you help reduce stress where possible. Simply believing the child when he or she states something regarding his or her experience of disability is one of the easiest ways to decrease anxiety for the child. By believing the student you are validating the child's experience. This provides an opportunity to provide support or assistance.
The problem of pain and fatigue is related to the issue of invisibility. Some children with NMD will experience pain and/or fatigue that is related to the impairment. As stated previously, believing the child when she or he complains of fatigue or pain will help reduce stress. Depending upon the age, personality, and maturity level of the child, he or she may not be able to clearly explain what is being felt. Therefore, one might create a method for the child to articulate the amount of pain or fatigue that is being experienced. For example, a pain scale like the kind physicians now use (1 being minimal pain and 10 being maximum pain) might help the child describe the type and extent of the pain being experienced. Providing this type of tool for the child can help evaluate the situation and learn basic management skills for pain and fatigue.
This articulation can also help you, as the educator, examine the situation and create an environment that is more conducive to learning. For example, by learning when the child usually experiences fatigue, one can prepare the child's schedule so that the child's education occurs when the child is least likely to be exhausted. Like all children, there will be good and bad days and sometimes the child will not be following his or her particular norm. Therefore, some flexibility within the classroom routine may help alleviate stress for both you and the children in your classroom.
Family members can also utilize this information to plan, for example, when homework is done or when a family outing might take place. Encouraging the child to keep a record (or keeping a record yourself) of changes in levels of fatigue and pain can be used to discuss concerns and medical treatment with doctors. Many children with progressive disabilities can feel confused, helpless or out of control because of the increasing loss of functions. Providing a means for the child to become more aware of his or her body and how it functions can help him or her feel more in control of the situation and less helpless. Because this approach focuses upon the individual's norm, rather than a societal norm, it also is a subtle way of affirming the child's experience while providing him or her with techniques to manage his or her life.
Some children with NMDs will need the assistance of a care attendant. As stated in the previous chapter, care attendants assist with personal needs, such as feeding or personal hygiene, while assistants, such as note takers or readers, provide a specific service. This situation can be perceived in two very different ways, either as evidence of the child's inability to be independent or in a more empowering light. The assistant or care attendant is, for all intents and purposes, the child's employee; his or her job is to provide services for the individual with a disability. As was noted earlier in this chapter, redefining the meaning of independence and promoting interdependence among the children results in more children mastering the abilities they need to succeed in life. Given that a child who needs a care attendant or assistant will continue to need this assistance in adulthood, beginning to teach the child basic management skills will benefit the child.
One of the simplest ways to encourage this empowered position and help the child learn good management skills is to treat the attendant or assistant as the child's employee. To do this, address the child when something needs to be done and encourage the child to instruct the attendant as to what should be done and when it should be done. For example, the child may have a care attendant who assists with eating and the class' lunch period is moved to an earlier time. As the educator, you alert the class to this change in schedule early in the day. The child should let the care attendant know of the change in schedule. Some children may be able to do this on their own, while others will need to be encouraged to notify the attendant. If the care attendant is not in the classroom, a brief reminder to the child to let his or her attendant know that there has been a change in schedule is a way of empowering the child making the child aware of his or her duties in that particular working relationship.
By giving the child the responsibility of taking care of this small business related task, you are providing the child with the opportunity to acquire basic management skills and effective communication processes, and empowering the child. Some children will be capable of handling managerial tasks at an earlier age than others and each child should be encouraged to take on as much of this business relationship as he/she is capable of handling. A teenager may be able to start managing the bookkeeping or scheduling of care attendants as well as the hiring and firing of these employees. Bringing the child into the managerial process in stages the child has the opportunity to learn these skills gradually and with less stress than if the tasks are not taken over until adulthood.
This gradual building of skills does more than relieve the undue stress that may occur later in life if the individual had not learned these things as a child. It is also a way for the child to be independent and gain and retain self-esteem because it puts him/her in charge of his/her own future. Often, when a child is dealing with an adult, there will not be any choices. Parents decide for the child when to go to bed and teachers tell him/her what to read. Although all children experience these moments of non-choice, children without disabilities have opportunities to make small decisions for themselves that disabled children may not have. They can decide to some extent when and what they eat. Generally speaking, children without disabilities are not supervised and regulated to the extent most children with disabilities are and, the more severe the disability, the more likely the child's ability to choose will be decreased by the adults around them. Acknowledging the student as the individual in charge of the care attendant/assistant is a way of empowering the child. This in turn provides an opportunity for increased responsibility while encouraging self-esteem, a sense of self-worth, and self-respect.
All children have unique social needs. They learn to socialize by watching others and from the messages they receive from the people around them and from society as a whole. Children with disabilities are no exception. The difference in behavior between children with and without disabilities is frequently the information that has been learned, not the manner in which it has been taught. While positive reinforcement of appropriate behavior (or negative reinforcement of inappropriate behavior) might be used to teach non-disabled children what is appropriate, the lack of correction of inappropriate behavior with disabled children tells disabled children that what they are doing is socially acceptable. This training, in combination with the messages children receive about how society feels about people with disabilities, creates added and unnecessary stressors for children with disabilities and tends to create different social outcomes.
Like children of other minority groups who frequently receive negative messages about themselves, children with disabilities consciously or unconsciously experience stress related to these cultural messages. These experiences can cause depression and a host of behaviors that may not be readily viewed as problematic by the larger society. While on some level society expects people with disabilities to be perpetual children (Shapiro, 1993), children with disabilities have to take on some fairly adult responsibilities and frequently are not always provided with the opportunity to learn the skills they need to successfully accomplish a task without undue stress. In this chapter, we have outlined just some of the ways educators and parents can help the child learn the skills necessary to deal with the responsibilities that are expected of them while, at the same time, alleviating or helping the child avoid undue and unnecessary stress caused by society and the environment.
Ability OnLine is a free internet community where children/youth with disabilities/illness and their parents can meet others like them, make friends from all over the world, share their hopes and fears, find role-models and mentors, and feel like they belong.
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American Disabled for Attendant Programs Today (ADAPT) is a grassroots activist organization that focuses on promoting services in the community instead of warehousing people with disabilities in institutions and nursing homes.
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303-733-9324
http://www.adapt.org/
Big Brothers Big Sisters of America is the oldest and largest youth mentoring organization in the United States with a proven track record of having a direct, measurable, and lasting impact on children's lives.
Big Brothers Big Sisters of America
230 North 13 th St .
Philadelphia , PA 19107
215-567-7000
http://www.bbbsa.org
Disability Resources on the Internet is a nonprofit 501(c)(3) organization established to promote and improve awareness, availability and accessibility of information that can help people with disabilities live, learn, love, work and play independently.
http://www.disabilityresources.org
Disabled Sports, USA offers nationwide sports rehabilitation programs to anyone with a permanent physical disability. Activities include winter skiing, water sports, summer and winter competitions, fitness and special sports events.
Disabled Sports, USA
National Headquarters
451 Hungerford Drive, Suite 100
Rockville , MD 20850
301-217-0960
http://www.dsusa.org
Families of Spinal Muscular Atrophy is the largest international organization dedicated solely to:
Learning Disabilities Online is a national educational service of public television station WETA in Washington , D.C. It is operated in association with the Coordinated Campaign for Learning Disabilities and is made possible by generous support from Lindamood-Bell Learning Processes®. LD OnLine offers online services and produces video programs dedicated to improving the lives of children and adults with learning disabilities and ADHD.
Muscular Dystrophy Association (MDA) is a voluntary health agency — a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans.
Muscular Dystrophy Family Foundation provides adaptive equipment and emotional support to individuals and families affected by one of over forty neuromuscular diseases covered under their program.
Muscular Dystrophy Family Foundation
2330 North Meridian Street
Indianapolis , Indiana 46208-5730
317-923-6333
800-544-1213
http://www.mdff.org/
National Dissemination Center for Children with Disabilities (NICHCY) is a center that provides information to the nation children and youth with disabilities.
National Dissemination Center for Children with Disabilities (NICHCY)
P.O. Box 1492
Washington , DC 20013
(800) 695-0285 · v/tty
(202) 884-8441
http://www.nichcy.org/
National Organization on Disability (NOD) The mission of NOD is to expand the participation and contribution of America 's 54 million men, women and children with disabilities in all aspects of life by raising disability awareness through programs and information.
National Organization on Disability (NOD)
910 Sixteenth Street, N.W. Suite 600
Washington , D.C. 20006
202-293-5960
TTY: 202-293-5968
http://www.nod.org/
Parent Project Muscular Dystrophy (PPMD) is a not-for-profit organization founded in 1994 by parents of children with Duchenne and Becker Muscular Dystrophy.
http://www.parentprojectmd.org
Winners On Wheels provides an innovative learning environment that promotes academic, social, and emotional development so children who use wheelchairs can gain life skill and experiences that will launch them toward productive, independent, and enjoyable lives.
Winners On Wheels
302 East Church Street
Lewisville , TX 75057
800-969-8255
http://www.wowusa.org/
World Association of People with Disabilities (WAPD) advances the interests of people with disabilities at national, state, local and home levels. They also link people with disabilities and their allies to current leading edge information via the various mediums of communication.
World Association of People with Disabilities (WAPD)
4503 Sunnyview Dr., Suite 1121
Post Office Box 14111
Oklahoma City, Oklahoma 73135
405-672-4440
http://www.wapd.org/
Wrightslaw Parents, advocates, educators, and attorneys come to Wrightslaw for accurate, up-to-date information about special education law and advocacy for children with disabilities. You will find articles, cases, newsletters, and resources about dozens of topics in the Advocacy Libraries and Law Libraries .
