Muscular Dystrophy
The voices of the disabled
Social Aspects
Adequate knowledge to allow inclusion: The school must strive for a whole-school-approach when a child with a disability is part of the community (Barrios, Hunt, Mazyck and Telljohann, 2015). Students must be educated on the disease in a way that promotes inclusion (Australian Research Alliance for Children and Youth (2013).
Unit outline
Barrios, Hunt, Mazyck and Telljohann, 2015ttд3[O�
Abuse and bullying: Studies have shown that children with disabilities are much more likely to suffer all forms of abuse (emotional, sexual and physical) than compared to that of their abled-bodied peers (Muscular Dystrophy Campaign, 2007).
Independence and friendships: The school plays a vital role in encouraging the child to make and maintain friendships (Muscular Dystrophy Australia, 2015).
Muscular Dystrophy Australia, 2016
Disease Management
Development of ICT skills: Learning computer skills is very important for muscular dystrophy sufferers. ICT skills are essential as at later stages in a sufferer's life, they will no longer be able to write or use their arms effectively due to muscle weakness (Pell, Gillies, Carss, 1997).
(Pell, Gillies, Carss, 1999)
Exercise: Both active and passive exercise is necessary. Exercise depends upon the stage of the child's disease. Swimming can be a very effective (Muscular Dystrophies Australia, 2015).
(Muscular Dystrophies Australia, 2015
Physiotherapists: Physiotherapists play an important role in the life of a child with muscular dystrophy. General practitioners, teachers and patients agreed the presence of physical and psychological management is positive (Bond, Bushby, Heap and Mander, 1996).
Bond, Bushby, Heap and Mander, 1996).
Lack of Knowledge and Experiences
Early Diagnosis: Teachers need to be more aware of the symptoms to help with early diagnosis.
Teachers need more education: Some children may begin school with the condition already present but showing no symptoms (Muscular Dystrophy Campaign, 2007). School staff may often be "the first to recognise the problem" during physical games or sport (Muscular Dystrophy Campaign, 2007, 3). Teachers are often unaware of the slower mental development for sufferers of Duchenne Muscular Dystrophy (Bond, Bushby, Heap and Mander, 1996).
Personal Care and Comfort
Eating: As their muscles may weaken, sufferers may have a problem with swallowing (Muscular Dystrophy Campaign, 2007). Meal times for sufferers may also take longer than those of the general student population and thus need altered eating times. Children with muscular dystrophy may be appointed aids such as adjustable tables and specialised cutlery to help maintain independence (Muscular Dystrophy Campaign, 2007). Children with later stages of the disease may also use a nasogastric tube to help feed the child.
Temperature control: As the disease worsens, children will often not have the ability to clothe themselves. Therefore staff and appointed student 'friends' will need to maintain that the child is appropriately dressed (Muscular Dystrophies Australia, 2015).
Toileting: All schools must have accessible toilets, however the needs of the child (due to varying severity) may increase and therefore will need more resources. Hoisting facilities and sufficient space need to be considered (Muscular Dystrophies Australia, 2015).
Speech: As the disease changes and becomes more severe, children may have slurred or reduction in speaking ability (Muscular Dystrophy Campaign, 2007).
Subtopic
Mobile and Physical activity: As a students muscle deteriorates they may change their means of movement from walking, crutches and eventually motorised wheelchair (Muscular Dystrophies Australia, 2015).
Parents
Parents working with schools: Parents need to work closely with school staff (teachers aids, teachers, etc) to allow the school to act in the best interest of the child (Runswick-Cole, 2008). Changes in the child's condition need to be discussed.
Runswick-Cole, 2008
Stages of Muscular Dystrophy increasingly difficult for parents: Parents report that significant stages in the child's muscle deterioration - (such as transition to a wheelchair) coincide with increased emotional hardship (Bond, Bushby, Heap and Mander, 1996). As the child's progresses through the stages of muscular dystrophy there is an increase in parental care requirements (Bray, Bundy, Burns, North, Ryan, 2011).
Increased family stress: There is increased risk of familial stress. This stress may effect siblings or even extended family (Bray, Bundy, Burns, North, Ryan, 2011).
Parents suffering: Parents with a children with muscular dystrophy report poorer well-being that those parents with normally functioning children (Bond, Bushby, Heap and Mander, 1996).
