• Attitudinal Barriers
• Expectations & Misconceptions
• Social Isolation
• Knowledge & Awareness

Although physical barriers are considered a significant impediment to full participation, the most frequently reported barriers to activity and participation for children with disabilities are attitudinal. The attitudes of those responsible for developing environments where learning can take place are critical, for these attitudes influence the learning opportunities offered.

Increasing education and awareness regarding persons with neuromuscular disorders within the school system may serve to address attitudinal barriers. It is essential that teachers continue to ensure they understand each child’s abilities and disabilities, for the manner in which a teacher responds to his or her students has an impact on the child’s developing sense of self. A message of acceptance must be conveyed and the classroom atmosphere should encourage the striving of each child to a level of personal excellence. Teachers should display a welcoming attitude, and should approach, respect, and listen to the ideas, knowledge, and expertise of the parents and children involved.

Peers must also be provided with the knowledge and skills to interact appropriately and respectfully with those with neuromuscular disorders, particularly those with adaptive equipment such as wheelchairs. It is the responsibility of the teacher to be a positive role model and demonstrate what constitutes acceptable and respectable behavior. Furthermore, the teacher must be prepared to address and handle discomfort and disrespect within the classroom and develop a means to address and circumvent such behaviors.

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The expectations of those responsible for developing environments where learning can take place are also critical, for these expectations also have much to do with the learning opportunities offered. What to expect from children with progressive neuromuscular disorders is often a concern, and misconceptions are commonplace. Teachers often indicate uncertainty regarding what skills and what degree of progress should be expected from these children, and whether the child is exerting an appropriate amount of effort in any given task. Children with neuromuscular disorders must be treated as any other child, where accommodations are made based on individual strengths and weaknesses. The child should be encouraged to participate in all classroom and playground activities; however, difficulty and weakness in skills and activities should not be reprimanded and children should not be pushed to extreme fatigue. The child is the best person to consult regarding how they feel exerting a certain amount of effort and energy and whether any accommodations or breaks are required. Speaking with the parents of the child and the health care professionals involved in the child’s care is always beneficial.

Because of the worsening nature of neuromuscular disorders, it is often assumed that educating children with progressive conditions is not a priority. However, the education of these children should not be minimized because of questions regarding their future. By excluding children from school, or not providing them with educational opportunities, it conveys to them that expectations are not held because their future is uncertain. This leads to little hope on the part of the child and prevents the child from developing a sense of purpose in life. This treatment is unfair and does not provide the child with equal opportunities nor an adequate quality of life.

Teachers should be influential towards all children in class regardless of their ability or disability. Individuals with neuromuscular disorders need to be supported in developing a positive self-concept and a sense of belonging, as do other children. However, unlike other children, they need to be supported in dealing with the ongoing loss of their physical abilities and resultant difficulties in learning. Even with this loss in abilities, it is essential that these children meet with success within the school environment to enable the continued development of self-confidence and self-esteem. Thus, the importance of providing these children with security and a sense of accomplishment through assigned projects should not be undermined.

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Children with neuromuscular disorders often have varying experiences with peers due to differences in the onset and severity of the disorder, with some being more notably affected during the school years. Regardless, children with neuromuscular disorders are often absent from school due to medical and health appointments, as well as sick days. Long periods of school absence may cause these students to feel isolated from their peers. Frequent absences make the development of relationships and acceptance into a social group more difficult, as the child is not there to share all the experiences with classmates and has less time and opportunity to develop a strong social bond.

Feelings of isolation are further cultivated due to a lack of ability to participate in social activities. Scheduling transportation, the need for assistance, and physical access often inhibit the opportunity for participation. Expectations for social involvement are often based on a child’s previous experiences during school, the onset of disability, or on anticipated reactions of peers. Thus, the perceived acceptance of peers and perceived opportunity for participation are very influential determinants of the effort exerted by the child to become involved. Because peers are a valuable source of emotional support and companionship, teachers should strive to encourage peer interaction by ensuring peer acceptance within the classroom and that adaptations are made to make participation possible.

School absences and less social contact may affect the learning opportunities offered to these children and their progress in school. Teachers may employ numerous strategies to prevent these children from falling behind in the curriculum, such as encouraging children to use lunch breaks and free periods to catch up on school work, making arrangements to prioritize particular subjects, having classroom assistants take notes in their absence, assigning or encouraging friends to lend notes and explain difficult work, providing extra work to account for the material missed, or having the missed class material sent home.

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The greatest barrier that teachers and students face in school is the ability to understand each child’s disability. For teachers to effectively influence children with disabilities, the teacher must understand the nature of each child’s disability, its course, and what can reasonably be expected in regards to the performance of each child. The teacher should encourage or provide the means for the child to meet with success early on in their educational careers. This will instill confidence and determination in all educational pursuits.

Ignorance amongst students can lead to bullying becoming a problem within the classroom and playground environments. In order to discourage such behavior children must be educated and made aware of the nature and reasons for a particular disability. An effective way to promote awareness of neuromuscular disorders within the classroom is to have a discussion about the similarities and differences among all students. It is important for students to learn to appreciate differences and understand that not everyone learns in the same manner or participates in an activity in the same way. Classes to help students learn about one another’s similarities and differences can increase perceptions and peer acceptance, and minimize the responsibility from those with disabilities in educating their classmates.

Students should be reminded that everyone has gifts and limitations and should be encouraged to think about those that they possess. It is important to encourage students to think about how they would feel if they had such a disability and how they would want to be treated or how they want to be treated with respect to their own particular disabilities. By viewing themselves in the shoes of a child with a neuromuscular disorder, they may better appreciate the situation and thereby treat the child more respectfully. Finally, students should be encouraged to think about how to be a supportive friend, and should discuss how and when it is acceptable to ask someone about their disorder. By emphasizing the fact that every one of us has a disability, whether it be hidden or not, it may put the child’s disability into perspective.

The child with a neuromuscular disorder should be given advice and support on how to identify challenges and barriers, and ways to overcome these barriers associated with their disorder. They should be questioned regarding how they want to be treated, what makes them happy, and what goals they have within their life. It is also important to ask a child how much information they would like to share about their life, their experiences, and their disability, as well as how they would like this information to be shared. 

It is important to remember that older children also experience difficulties related to maturity. They encounter puberty and the typical psychosocial aspects associated with adolescence: increasing body awareness, increasing significance of peers to sense of self, and increasing independence. Adolescence brings about additional challenges for those with neuromuscular disorders. While it is typically viewed as a period in life where independence is sought and increased, for those with neuromuscular disorders this increased independence is overburdened by a loss of control and an increasing dependence on others and on assistive technology to counter physical decline.

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