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Created By: Eric Trottier, Maria Maclean, Jenny Abunassar, and Emily Shea For: Professor Whitley, PED 3106 U

//** A Teacher Resource........ **//

// Do you know WHAT Cystic Fibrosis is? //

// Do you know the IMPACT Cystic Fibrosis can have in your classroom? //

// You WILL.... // toc

=__ Cystic Fibrosis (C.F.): An Overview __=

Cystic Fibrosis (CF) is a hereditary, non-transmissive degenerative disease that affects a number of systems in the body. The figure on the left illustrates the chances that unaffected "carrier" parents will have an affected or "carrier" child.

To put it simply, one of the most significant aspects of CF is thick, sticky mucus which ultimately has a severe impact on **respiratory and digestive systems** in CF patients in particular. The sticky mucus in the lungs affects breathing because the cilia are unable to move bacteria out of the **lungs** (remember - thick, sticky mucus) and so bacteria cultures remains in the person's lungs and continue to breed. This breeding of cultures causes infections, and this perpetuates a larger problem because people with CF are more vulnerable to certain bacteria that are very common yet do not affect non-CF persons.

The thick sticky mucus also affects the person's digestion. The **pancreas** creates enzymes, which are essential for the absorption of nutrients from consumed food. Once created by the pancreas, the enzymes travel to the intestines via ducts, where the enzymes are then called into action. Unfortunately, the ducts in persons with CF get blocked from the mucus; therefore the food that is consumed does not get completely digested, which can lead to malnutrition and various medical complications over time. Lipids (fat) are the most difficult macro-nutient (i.e. carbohydrates, proteins, lipids) for persons with CF to digest. Without medical assistance, much of the fat consumed is not digested at all. This may sound like a desirable effect, but it leads to complications with fat-soluble vitamin levels (i.e. A, D, E, K) and various other issues. The pancreas also secrets the hormone insulin. CF tends to cause clogging of pancreatic ducts and insulin production may be jeopardized leading to insulin-dependent diabetes (15% of all CF patients).

Additionally, problems with the **liver and gallbladder** may also occur in individuals with CF. Bile ducts may be clogged as a result of thickened secretions. Blockage of the liver ducts may cause permanent damage to the liver, and the gallbladder may need to be removed if its ducts are clogged.

Men and women with CF may be affected differently in terms of their **reproductive organs**. For men, over 95% are infertile because the vas deference does not usually develop. The vas deference are the tubes that carry sperm from the testicles to the urethra. For women, there may be a decreased fertility rate due to thick cervical mucus blockage, hindering the entry of sperm.

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=__ Characteristics of Cystic Fibrosis __= Common characteristics between many people with CF include:
 * Short and shallow breathing
 * Clubbed fingers and toes is common
 * Thinner physique
 * Physically weaker than peers (muscular strength, muscular endurance and cardiovascular activities)
 * Loose, greasy, foul-smelling stool, and gas are common characteristics
 * Increased daily frequency of needing to pass stool
 * Male infertility

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=__ Instructional Considerations - Classroom __= In ANY classroom, consider the following strategies to promote inclusion of students with C.F.:
 * 1) Allow the student to go the washroom whenever they require, preferably without having to ask in a public manner.
 * 2) Ensure that the student takes their medication (if applicable).[[image:http://ecx.images-amazon.com/images/I/61J1HJ2PY6L._SL500_AA300_.jpg align="right"]]
 * 3) Being aware of the social interactions students with C.F. are participating in, and help facilitate further social interaction by implementing small group social interactions.
 * 4) Try to encourage students with C.F. to create and maintain friendships with other children.
 * 5) Help support students with C.F. in particularly by aiding in their emotional development by being present and expressing a willingness to help them succeed in areas of need.
 * 6) Help students with CF develop a positive self concept by using positive reinforcement frequently- though this strategy is one that all teachers should be using with all students regardless of the presence of an exceptionality.ncourage students to make choices about their day in order to provide them with a semblance of control over their own lives given that having C.F. was something outside of their control.
 * 7) Ensure lines of communication are open between yourself and your students, yourself and your students’ parents/caregivers, as well as the partnership between all three individuals.
 * 8) Ensure that activities which may include physical activity in the classroom include ALL children, meaning that activities should not be excessively strenuous in order to ensure students with C.F. are included. Make any modifications which you may deem necessary to ensure complete inclusion!
 * 9) To aid in cognitive development, provide ALL students with opportunities to complete tasks which require thinking. Provide appropriately challenging tasks for ALL students.
 * 10) Using differentiated instruction and universally designed lesson plans, help ALL students improve upon their language and communication skills. Use word games and songs for instance, which may be appropriate to both subject matter and your class.
 * 11) As teachers we must be compassionate. If a student with C.F. is frequently absent, we must ensure that they have ample opportunity to catch up. Provide the student with notes or assignments that were missed and modify deadlines and expectations if need be.

Anything less means that inclusion is not being implemented.

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=__ Instructional Considerations – Physical Education __= In a physical education setting, consider the following:
 * Allow the student to go to the washroom when they require, preferably without having to ask in a public manner
 * Ensure that the student is taking their medicine (if applicable)
 * Ensure the student remains hydrated
 * Ensure the student remains hydrated with an electrolyte replenishing beverage if the student is performing in sweat-inducing activity and/or in hot weather

Although considerations are present, inactivity is NOT a consideration. Engagement in regular physical activity consistently shows increases in the health and lifespan of people with CF.

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__ Ontario Ministry of Education: __
** The Ontario Curriculum, Gardes 1-8: Health and Physical Education, Interim Edition: **

"Guidelines for Meeting Special Needs in Health and Physical Education"

1) Focus instruction on what the student is able to do rather than on his or her disability or special education needs. 2) Consult with the student about his or her needs and about choosing strategies that will help him or her feel comfortable and included. 3) Approach each situation on an individual basis, in consultation with the special education teacher and/or support systems and agencies, making individual adaptations in response to the student’s needs, and requirements outlined in the IEP.  4) Make adjustments only when necessary and consider adjustments to be temporary and fluid. Continue to make accommodations and modifications as needed. 5) Break down new skills and focus on building each skill in a structured progression. Be fair to all participants and avoid drawing attention to accommodations or modifications that are provided for individual students.  6) Make sure appropriate equipment is available, and use specialized equipment, such as balls of appropriate sizes, colours, weights, and/or textures, when necessary. 7) Adjust the rules of activities to increase students’ chances of success while retaining a suitable level of challenge (e.g., by increasing the number of tries/attempts allowed, making a target bigger or bringing it closer, adjusting the size of the playing area, varying the tempo of the music, lengthening or shortening the playing time). 8) Give verbal cues or prompts. 9) Have a partner provide assistance. 10) Consider what accommodations, adjustments, or special guidelines may be required to assist students in understanding social rules and codes of conduct in a variety of spaces, and in coping with change room routines, transitions between activities, and moving to and from the gymnasium.

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**// Education for All //**** : The Report on the Expert Panel of Literacy and Numeracy Instruction for Students with Special Education Needs, ** ** Kindergarten to Grade Six: **

Ontario’s Education Act specifically defines “exceptional pupil” and recognizes categories of behavioural, communicational, intellectual, physical, and multiple exceptionalities. For the purposes of identification of “exceptional pupils”, there are currently twelve exceptionality definitions. Many Ontario students have not been formally identified as “exceptional”, but still exhibit abilities that indicate that they are in need of special education programs and/or services.

In any given classroom, students may demonstrate an extensive range of learning needs. Some may, for instance, have difficulties with reading, writing, or mathematics. Others may be new to our languages and culture, or speak another language with more fluency than the language of the classroom. Still others may read complex books or understand advanced mathematical concepts. Some may appear to lack motivation or be underachievers relative to their abilities. Whatever the reasons for the student’s needs, teachers must be prepared to respond effectively and ensure that each student is learning to his or her potential.

The Expert Panel has taken an inclusive, non-categorical – rather than exceptionality-based – approach to address programming for students with special education needs. This report has been written to assist teachers in helping all of Ontario’s students learn, including those students whose abilities make it difficult for them to achieve their grade-level expectations.

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=__ Social & Behavioral Considerations __=

> It is common for students with C.F. to require time away from school due to the impact C.F. may have on their overall health.
 * **School Absenteeism**:

> Health impairments as a result of C.F. may significantly inhibit their engagement in everyday social interactions (as previously mentioned). Given > that a student with C.F. may experience delays in physical development as a result of fewer opportunities to thrive engaging in physical activities, > particularly with schoolmates (physical activity is likely a struggle, as previously discussed).
 * **Social Relations**:

> Students with C.F. may be overly dependent emotionally on loved ones since health issues typically associated with C.F. in conjunction with school absenteeism may hinder their ability to/ opportunities to, develop relationships with others. >> or people they trust. It may be particularly beneficial for students with CF to discuss their feelings with other individuals who are living >> similar experiences. Support groups for individuals with CF and for individuals whose loved ones have CF exist and may serve as a >> positive channel. >> (See: http://www.mayoclinic.com/health/cystic-fibrosis/DS00287/DSECTION=coping-and-support) >> ﻿ >>> > Similarly, students with C.F. may have difficulty with language development and communication as a result of a potentially limited social experience.
 * **Emotional Well-being**:
 * Some common emotions which may be experienced by individuals with C.F. include anger and fear. These emotions are likely to be particularly evident in teens. A strategy which may help students with CF cope may be to talk openly with someone
 * Alternatively, students with CF often have “care teams”, which may include family members in addition to a mental health professional.
 * Additionally the following list of insecurities may be experienced at some point in the lives of individuals with CF:
 * insecurity about using public washrooms
 * insecurity about staying overnight at someone's home
 * insecurity about taking pills and medical procedures in front of others
 * insecurity about eating more food than other people
 * insecurity about sweating more than other people and about having this fact be visible (i.e., salt layer, wet clothes)
 * insecurity about body image as a whole.
 * ** Language Development/Communication: **

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= To Summarize... =

To summarize what we have shared with you please watch the following video as Dr. Richard Sheldon speaks about Cystic Fibrosis:

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// We hope that this wiki-page has helped shed some light on Cystic Fibrosis and the effects it can have on the learning experience of students who have CF. We also hope that this wiki-page has provided you with ample strategies and information pertaining to teaching students with CF in your classroom. //

// While we typically consider exceptionalities in the classroom to consist primarily of learning disabilities or behavioural disorders, we strongly believe that a physical exceptionality, like CF, is one that all teachers should be aware of. If we are to work towards ensuring that all students are included in our classrooms, it starts with us, and it starts with us taking on the responsibility of being well-informed. Our primary responsibility is to educate each and every one of our students- a primary goal the Ontario Ministry of Education fully shares. //

// Thank you for viewing our page. //

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= Annotated Bibliography =

(1) Alma, Lori. (2010). “Organs Affected by Cystic Fibrosis” in //About.com//. Retrieved from: []

This website is particularly useful in providing you with information about CF and the impact it can have on different body systems, particularly respiratory and

digestive systems. This website is also helpful in providing you with additional resources to consider referring to, such as helpful videos and noteworthy images.

(2) Canadian Cystic Fibrosis Foundation.Canadian Cystic Fibrosis Foundation: Breathing Life Into the Future. 2010. 8 Dec. 2010. []

The Canadian Cystic Fibrosis Foundation website provides users with a wide range of information on CF with regards to symptoms, genetic qualities of the disease,

research and promoting awareness. The most useful aspect of this website for our research was a page devoted completely to teachers. Found easily under "Quick

Links", teachers are taken to a very informative page that has a wealth of information on CF. It identifies what symptoms a teacher can look for in a student with CF, how

to accommodate a student with CF in their classroom and what to take into consideration when teaching.

(3) Mayo Clinic Staff. (2010). "Coping and Support" In //Cystic Fibrosis//. Retrieved from [|http://www.mayoclinic.com/health/cystic-fibrosis/DS00287/DSECTION=coping-]

[|and-support]

This website brought to you by the Mayo Foundation for Medical Education and Research provides you with additional information about CF. This section of the

website is particularly useful in providing you with information about how to provide support and encourage coping strategies in individuals who have CF. This website

may be particularly useful to teachers who have little or no knowledge about the difficulties individuals with CF may experience and certain coping strategies that may be

useful and encouraged by teachers.

(4) Ministry of Education. __Education for All: The Report of the Expert Panel on Literacy and Numeracy Instruction for Students with Special Education Needs, ﻿﻿Kindergarten to Grade Six.__ Ontario: Queen's Printer for Ontario, 2005. // Education for All // is an extremely valuable resource but because the focus on the report is more geared toward the literacy/numeracy side of the educational spectrum, it does not suit our purposes for speaking about the physical disability of Cystic Fibrosis. While Cystic Fibrosis does not simply affect the lungs thus, the Physical Education aspect of the exceptionality, we found that the document rarely if ever discussed physical disabilities throughout the report. What we did take from the report though is what the report itself is setting out to do and how it defines “exceptionalities” in Ontario. It is definitely a great resource tool for teachers struggling to find Ministry resources to address Special Education concerns but for our purposes, there was not enough information regarding teaching strategies with regards to physical disabilities.

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(5) Ministry of Education. __The Ontario Curriculum, Grades 1-8: Health and Physical Education__,  Interim Edition. Ontario: Queen's Printer for Ontario, 2010.

Because Cystic Fibrosis is a physical disability, the Health and Physical Education Curriculum is where we began our search for specific criteria and teaching strategies for students in a physical program with physical difficulties. Unfortunately, in terms of Special Education, all that were given in the document were general definitions and very broad strategies that encompass a range of exceptionalities but nothing that is particularly specific to physical disabilities which made it hard to collect pertinent information from this source. While the curriculum documents are always a great place to start for a teacher who is facing a new situation that he/she is not sure how to manage, for our purposes, the information did not tell us much except the general strategies present in all other curriculum documents.

[| http://www.edu.gov.on.ca/eng/curriculum/elementary/healthcurr18.pdf]

(6) Noah’s Ark Children’s Services Resource Unit. (2010). “Fact Sheet” in Cystic Fibrosis. Retrieved from []

This informative website will lead you to a “Fact Sheet” pdf about cystic fibrosis. You will be provided with information about CF, as well as information about strategies

teachers may use to accommodate students with cystic fibrosis. Each domain is discussed (i.e., physical, emotional, cognitive, language, and social) which will help you

learn important facts about CF and its effects on the individual and their learning experience.

(7) Patton, Anne C., Ventura, Jacqueline N. and Savedra, Marilyn(1986) 'Stress and Coping Responses of Adolescents With Cystic Fibrosis', Children's Health Care, 14:

3,153 — 159

Patton, Ventura and Savedra's article, "Stress and Coping Resonses of Adolescents With Cystic Fibrosis", talks about a study conducted comparing the stress levels

and coping skills of a group of students with CF compared to a group of healthy students in high school. Among other things, the study showed that most students with

CF felt that their teachers were unable to recognize symptoms of the disease and were not adapting to the students' needs within the class, especially regarding

absences. The article heard from some students who explained that they were failing entire grades due to simply missing so much time due to their illness; they found

their reading levels, mathematics and writing abilities were far below their grade level. This article highlights the need for teachers to educate themselves on cystic

fibrosis; what needs their student(s) with CF has and how to accommodate for those needs in their classrooms. This article provided us with a realistic, if not ideal,

perspective how CF is treated in schools, and why it is important that we understand the disease.

(8) Sheldon, Richard M.D.“Respiratory Problems” (2007). In //Videojug.com// retrieved from __http://www.videojug.com/tag/respiratory-problems__

These videos provide you with information about Cystic Fibrosis, particularly pertaining to health concerns often associated with CF. Dr. Richard Sheldon answers a

series of questions that may be particularly useful and informative for teachers who know very little about CF in a palpable manner. Dr. Sheldon simplifies information as

much as possible to enhance viewers’ understanding.

(9) [|http://www.cff.org] The Cystic Fibrosis Foundation is an excellent source for those looking for more information on the subject. It provides teachers with need-to-know information for teaching students with CF found easily under the "Living With Cystic Fibrosis" link at the top of the page. Cff.org also provides CF Education Webcasts on managing life with CF, advances made in research as well as on going research, and nutrition. All of which are beneficial for teachers and for those living with CF.

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