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Inclusive Education - Noonan Syndrome

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Nicole Boot

on 14 October 2012

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Transcript of Inclusive Education - Noonan Syndrome

By Nicole Boot Inclusive Education
Noonan Syndrome What is Noonan Syndrome? Because of the variety of challenges faced by students with Noonan Syndrome and the fact that every case of Noonan Syndrome is different, there are potentially various challenges that schools face in order to meet the needs of these students.
The most important step is for teachers and staff to be well informed of the particular needs of the student at their school. During my observations of Noonan Syndrome in the secondary school context I noticed that, because the particular student did not have any obvious learning difficulties, in most classes teachers were unaware for the first part of the year of the child's condition and needs. In this particular case hearing difficulty and a difficulty expressing ideas in written form where the main barriers to learning. Physical barriers were also present which affected art and PE learning.
Therefore I believe the main challenge and responsibility of the School is to ensure adequate awareness and discussion of strategies with teachers and parents. Naturally this will be an ongoing process as teachers are likely to change from term to term. Noonan Syndrom in the Secondary School Context Pedagogical Strategies for teaching Students with Noonan Syndrome References ‘The most complex genetic condition’ Noonan Syndrome is a genetic disorder that occurs in approximately 1 in every 2500 live births (UK). Unlike many other genetic disorders it is not easy to define Noonan Syndrome. Symptoms and features are numerous and varied and can change dramatically from person to person. There is still a lot to learn about Noonan Syndrome and research is continuing into the exact genetic cause. Only about 50% of cases are hereditary, the remaining 50% are caused by spontaneous changes in the genetic information (Noonan Syndrome Research Unit, 2004).

Despite the fact that Noonan Syndrome is occurs almost as frequently as Downs Syndrome, there is much less awareness of the Syndrome or support for those who live with it. (Noonan Syndrome Association, n.d.) Physical symptoms Symptoms of Noonan Syndrome are extremely varied and not all people will have the same symptoms. Some of the most common physical symptoms include:
Congenital heart defects (present in most Noonan Syndrome sufferers)
Distinctive facial characteristics - (wide set slanting eyes, low set ears, short thick neck are among the most common)
Short stature
delayed puberty
hearing and speech problem
Feeding problems
Poor muscle tone leading to fatigue
Poor motor skills and coordination
This is by no means and exhaustive list and not
all people with Noonan Syndrome will display all these symtoms. Cognitive and Behavioural Issues Cognitive and behavioural issues faced by those with Noonan Syndrome are even more varied than the physical symptoms. In a publication by the Noonan Syndrome Association in the UK it was stated that "NS does not have a specifically defined known, or formally recognised, behavioural phenotype (clinical picture)." (Noonan Syndrome Association, 2003, p5).
Some behavioural and cognitive issues include:
Short concentration span
Poor short term memory retention
Social immaturity
Dislike in change of routine
Heavily demanding of attention
(Laverick, n.d.) Physical challenges

The vast variation in physical characteristics of Noonan Syndrome mean that children face a variety of challenges in the school environment.
The most obvious of these is in classes such as PE where lack of muscle tone and fatigue will affect what a student is able to accomplish. Lack of coordination and spacial awareness will also affect their ability to be successful in sports and games. This is likely to have an effect not only on the child's self esteem but also on their ability to mix with peers as sports and games are such a big part of high school culture.
Lack of motor skills is also likely to affect success in art as Laverick (n.d.) explains: "At the level of fine motor control, a wide carrying angle of the elbow, small hands, and a low set thumb, all produce major difficulties for pincer grip and pencil control." (p3).
Another major issue for Noonan sufferers is height. If a classroom or school environment is not conducive to short stature this can affect the students ability to be independent and cause frustration.
Although not necessarily present in all cases of Noonan Syndrome, hearing loss can cause difficulties and learning barriers in all areas of secondary school life. Missing instructions by teachers, especially in large classrooms, gyms or outside, and missing what other students say can both be a serious learning disadvantage for students with Noonan Syndrome. Social, Behavioural, and cognitive challenges Along with the various physical challenges and barriers faced by children with Noonan Syndrome in the secondary school environment, there is also a variety of social, behavioural, and cognitive challenges. Although these are numerous, as mentioned previously the number of symptoms and severity of symptoms present in any one person may vary greatly. Based on the survey by Sheila Laverick (2004) 68% of children attend mainstream schools, while the remaining 32% attend special schools or other forms of education. Furthermore, although children with Noonan Syndrome do have distinct learning difficulties the average level of intelligence falls within the normal range (Money & Kalus, 1979 cited in Lavorick).
Of the issues described earlier in this presentation, short concentration span and poor short term memory retention cause learning barriers. For example when a teacher explains a certain mathematical problem or a term in English a student with Noonan Syndrome may need this explained several times in order to remember it. Like wise in classes where there is a lot of listening for long periods or concentrating on one task for a long time then concentration and distractibility may become a problem. This may be perceived as a behavioural problem when in reality it is a result of Noonan Syndrome. Stubbornness and the need for routine may also present barriers for a child with Noonan syndrome, especially in the secondary school where students move to different classrooms and have different teachers throughout the year.
Socially, a high demand for attention from teachers and peers may cause issues within the school environment which would need to be managed by teachers. Immaturity and an inability to make and keep friends could lead to a dislike of school and consequently develop into a learning barrier.

Challenges for Schools Challenges for Schools - the school environment The school environment is particularly important for children with Noonan Syndrom as teasing and ridicule can be particularly damaging. Therefore another key responsibility of the school is to ensure a culture of awareness, value of diversity, acceptance, and positive encouragement.
"Attitudes are the biggest barriers for people with disabilities" (Neilson 2005)
It is encouraging to note that I did observe this in the context of PE lessons where positive encouragement by peers lead to success and increased self-esteem.
With this attitude Students with Noonan Syndrome need not be disadvantaged in the secondary school context. Presenting learning material, including instructions, visually as well as orally is important for students with hearing difficulties. It may also be necessary to repeat certain points or instructions with the student in order to assure they have remembered what is required.
Varying activities and tasks is also important as students may not be able to concentrate on one task for long periods of time. Instead of completing one extended learning activity the teacher could set two or three different activities for the same topic.
Giving options for output is a strategy I observed used by another teacher which successfully aided the student in expression of ideas. Rather than setting the task, for example "write a paragraph," a variety of options could be presented e.g. "write a paragraph, or draw a flow chart/diagram or mind map." Often children with Noonan Syndrome have lots of ideas or opinions but are unable to express them in written form. by allowing them to express themselves in other formats they are not only able to show what they know in the most effective way, but also gain a feeling of success from the task.
Varying learning outcomes may also be appropriate for certain subjects, especially PE and art. It is important that teachers help students reach their personal potential and understand the particular physical limitations the particular student may have.
Socially, students with Noonan Syndrome may be very demanding of teacher attention and the attention of their peers. It is important that the teacher manages this to ensure that the necessary individual attention is given e.g. repeating instructions or new concepts, without allowing the student to monopolise teacher time or distract or interrupt other students. Manging grouping and pairing of students for collaborative work may also be necessary so that children with Noonan Syndrome do not get left out or excluded in the class.
Creating an environment of awareness and acceptance is particularly important for the success of students with Noonan Syndrome. Teachers must not allow negative or derogatory comments from other students. An understanding of the importance of valuing diversity is crucial in the classroom as acceptance by peers and making friends are crucial elements of self-esteem for any secondary school student and are all the more difficult to obtain for students with Noonan Syndrome.
Hall, B. (2010). Noonan Syndrome. Retrieved from:

Laverick, S. (n.d.). Information for Teachers. Retrieved from Noonan
Syndrome Association website http://www.noonansyndrome.co.uk/docs/pdf_docs/Information_for_Teachers_website.pdf

Laverick, S. (2004). Education in Noonan Syndrome. Retrieved from
Noonan Syndrome Association website

Neilson, W. (2005). Disability: Attitudes, History and Discourse. In D. Fraser, R. Moltzen & K.
Ryba (Eds.), Learners with Special Needs in Aotearoa New Zealand (3rd ed., chapter 1). Palmerston North, New Zealand: Dunmore Press.

Noonan Syndrome Association. (November 2003). Learning Behaviour in Noonan Syndrome.
Presented at BDF Newlife Noonan Syndrome Information Day. Retrieved from Noonan Syndrome Association website http://www.noonansyndrome.co.uk/docs/pdf_docs/Learning_Behaviour_in_NS_2004_Website.pdf

Noonan Syndrome Association. (n.d.). What is Noonan Syndrome? Retrieved from:

Noonan Syndrome Research Unit, Saint Geaorge's Hospital London. (2004). Noonan Syndrome.
Retrieved from Noonan Syndrome Association website http://www.noonansyndrome.co.uk/docs/pdf_docs/What_is_NS_Booklet_OLDER.pdf

(Hall, 2010)
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