Physical education and children with CHARGE syndrome: research to practice.
Article Type: Report
Subject: Developmentally disabled children (Education)
Developmentally disabled children (Research)
Physical education and training (Research)
Physical education and training (Study and teaching)
Charge syndrome
Authors: Lieberman, Lauren J.
Haibach, Pamela
Schedlin, Haley
Pub Date: 02/01/2012
Publication: Name: Journal of Visual Impairment & Blindness Publisher: American Foundation for the Blind Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2012 American Foundation for the Blind ISSN: 0145-482X
Issue: Date: Feb, 2012 Source Volume: 106 Source Issue: 2
Topic: Event Code: 310 Science & research
Accession Number: 282068141
Full Text: Structured Abstract: Introduction: Children with CHARGE syndrome often experience significantly delayed motor development, which affects their performance in many motor skills and physical activities. The purpose of this study was to determine the status of physical education provided to children with CHARGE syndrome. There were five main areas of focus: (1) physical education setting, (2) modes of communication, (3) modifications, (4) successful units, and (5) difficult units in physical education. Methods: A validated questionnaire was completed by 26 parents of children aged 6-19 with CHARGE syndrome who were attending an international CHARGE conference for families. The questionnaire was used as the primary source to obtain parents' perspectives on the physical education experiences of their children with CHARGE syndrome. The results of the feedback from parents were used to offer practical suggestions for physical education programming. Results: The results revealed that the physical education placement affects children's success and parents' satisfaction with regard to physical education. Also, children who had support staff, such as a teacher's aide, paraeducator, or intervenor in physical education had a more successful experience. A variety of communication methods were used with children with CHARGE syndrome. The physical education units that the parents documented as being successful were swimming, scooters, bowling, fencing, T-ball, dancing, rock climbing, floor hockey, field hockey, and gymnastics. The units that the children struggled with the most were fundamental motor skills, such as skipping, running, hopping, and any sports unit with a fast-moving ball. Discussion: Physical education placements, communication, and modifications must be individualized for each child with CHARGE syndrome. In addition, support staff must be trained specifically for the unique needs of a child and the core curricular area of physical education. Implications for Practitioners: Suggestions for improving the physical education program are included to increase children's involvement in class and success in the specific units that are offered.

**********

Physical education is a direct service required by law for all children, both those with or without physical or mental impairments or both. The goal of physical education is to "teach children physical and motor fitness, fundamental motor skills and patterns, and skills in aquatics, dance, and individual group games and sports" (Office of Special Education and Rehabilitation Services, 2006, p. 18). This article specifically focuses on the experiences and needs of children with CHARGE syndrome in relation to physical education.

CHARGE syndrome is an autosomal dominant genetic disorder that is typically caused by mutations in the chromodomain helicase DNA binding protein-7 (CHD7) gene. The acronym CHARGE is used to indicate the physical and health issues that are associated with the syndrome. The nonrandom association of coloboma, choanal atresia, retardation of growth and development, and genital and ear anomalies are frequently present in various combinations and degrees in individuals with CHARGE syndrome (Tegay & Yedowitz, 2009). A clinical diagnosis of CHARGE syndrome requires the presence of four or more major features or three major features and three or more minor features.

Motor delays are one of the key issues with children with CHARGE syndrome. Hefner and Davenport (2006) noted that children with CHARGE syndrome show considerable delays in their motor development because of vestibular dysfunction, truncal hypotonia with ligamentous laxity, decreased visual acuity, and hearing impairment. Because of these medical issues, individuals with CHARGE syndrome often need multiple and prolonged hospitalizations, which can exacerbate developmental delays because of their lack of socialization and physical activity during the hospitalizations. Cognitive impairment may also be a factor related to individuals with CHARGE syndrome, although it is generally less than that of the impairment of motor development. It is imperative to address these issues sufficiently in a timely manner to maximize developmental outcomes (Tegay & Yedowitz, 2009).

Many of the characteristics of CHARGE syndrome affect balance, including both sensory impairments and musculoskeletal impairments. Impairments of the vestibular system that affect balance include semicircular anomalies (Murofushi et al., 1997) and damaged or missing vestibular organs (Williams & Hartshorne, 2005). Some sensory impairments include colobomas, semicircular anomalies (Murofushi et al., 1997), damaged or missing vestibular organs (Williams & Hartshorne, 2005), and somatosensory impairments ranging from hypersensitivity to hyposensitivity. Individuals who experience hyposensitivity receive limited feedback on the positions of their joints and muscles, which often leads to balance difficulties.

Musculoskeletal problems that are associated with CHARGE syndrome, including low muscle tone, increased joint laxity, and skeletal alignment impairments, may also compromise balance (Girardi, 2009). Children with low muscle tone can have difficulty maintaining contractions and shifting their body positions and may initiate movements or respond to perturbations slowly. Their low muscle tone causes them to fall into gravity, requiring volitional control to correct, unlike typically developing children who can maintain a seated position with subconscious corrections. Children with CHARGE syndrome may contract their muscles to stabilize their joints, such as scrunching their feet or raising their shoulders. Over time, flexibility in these muscles is reduced, which may cause further problems with skeletal alignment. Increased joint laxity or hypermobility in most joints results in an unstable skeletal base and decreased postural stability (Girardi, 2009). Skeletal alignment problems that are associated with individuals with CHARGE syndrome may include flat feet, scoliosis, and cervical fusions. Orthotics can be worn to avoid the unstable base of support caused by the altered body alignment from flat feet.

Children with CHARGE syndrome may miss the opportunities to play on the playground, go for walks, jump rope, learn to ride a bike, and enjoy indoor and outdoor physical activities. When they do enter school, it is up to the physical education teachers to provide them with appropriate placements and experiences to promote the development and enhancement of their motor skills (Columna, Davis, Lieberman, & Lytle, 2010; Lieberman, 2011).

Placements for physical education can range from full inclusion to segregation, with options in between (Lieberman & Houston-Wilson, 2009). The placement decision should be made by the child's entire multidisciplinary team with input from the parents. Whatever the placement, it is important to ensure there is clear receptive and expressive communication during physical education no matter what method a child uses (Arndt, Lieberman & Pucci, 2004).

In many cases, children with CHARGE syndrome have the potential to develop their fundamental motor skills and a health-enhancing level of fitness if they are given adequate opportunities. The unique nature of CHARGE syndrome and the absence of informed and trained adults may lead to decreased opportunities for physical activity and often to limited physical education expectations. Children with CHARGE syndrome may not be provided with appropriate physical education. Currently, the training of paraeducators for working with children with visual impairments does not include physical education in most cases (McKenzie & Lewis, 2008; Russotti, Shaw, & Spungin, 2004). Appropriate physical education, which includes trained paraeducators in physical education, can promote the development of motor skills and physically active lifestyles (Lieberman, 2007; Pangrazi & Beighle, 2009), as well as provide peer socialization opportunities for children with CHARGE syndrome (Pangrazi & Beighle, (2009). The development of motor skills for children with CHARGE syndrome can be enhanced with the underlying skill deficits, such as balance, eye-hand coordination, or proprioceptive skills, as the focus. This technique is considered the bottom-up approach, much like what is done in physical therapy. Or it can be taught with the end goal in mind, such as balancing while jumping on a rebounder, catching a ball for eye-hand coordination, or running on grass to work on proprioceptive skills. Teaching with the end goal as the focus is referred to as the top-down approach (Block, 2007). The approach that is used depends on the objectives of the lesson, the child's Individualized Education Program (IEP), and often the child's developmental level. The overarching goal is for children with CHARGE syndrome to learn the same skills, activities, and sports as their same-age peers.

There has been no research on the physical education placements, communication needs, effective units, modification needs, or barriers faced by children with CHARGE syndrome. It is imperative that children with CHARGE syndrome receive the knowledge and tools to be able to develop skills to be physically active both in their schools' physical education settings and their home environments. Each child's physical education teacher or adapted physical education teacher must be well equipped with the knowledge necessary to provide the student with CHARGE syndrome with the most comprehensive curriculum available.

The study

PURPOSE

The purpose of the study reported here was to determine the status of physical education provided to children with CHARGE syndrome. The researchers focused on five main areas that are related to physical education: physical education setting, modes of communication, modifications, successful units, and difficult units.

METHODS

The institutional review board at the university of the principal investigator provided permission to conduct research on human subjects. Written consent was obtained from the parents, the national CHARGE Syndrome Foundation, and the coordinators of the conference where the data were collected. The parents were contacted prior to the conference and apprised of the research that would take place.

Participants

Twenty-six parents of children with CHARGE syndrome voluntarily participated in the study (see Table 1). The children of these participants ranged in age from 6 to 19 and from prekindergarten through college. Eleven of these 26 children were placed in an inclusive classroom, 6 were in self-contained classrooms, 1 was in a residential school for students who are deaf, 6 were in a combination of self-contained and inclusive classrooms, and 4 were placed in other classroom settings that were not specified by their parents.

Setting

The data were collected by three researchers at the International CHARGE Syndrome Conference in Chicago. The questionnaire was sent electronically to all the parents before the conference to be filled out prior to or at the conference. At the conference, the organizers posted signs and had copies of the questionnaire available at various locations. Each questionnaire took approximately 45 minutes to complete. The researchers had ample time to read the responses and follow up at the conference with the parents, when necessary, to obtain additional information or clarification.

Instrument

The questionnaire was developed by the principal investigators (the first two authors) to gather information related to the physical education needs of children with CHARGE syndrome. It included demographic information, closed-ended questions, and open-ended questions (see Box 1 for examples of the questions).

Seven experts (three parents of children with CHARGE syndrome, two experts on CHARGE syndrome, one adapted physical education specialist, and one physical therapist who specializes in working with children with CHARGE syndrome) validated the questionnaire for face and content validity. The questionnaire was distributed, revised within one month's time, and redistributed twice in the next two months to accommodate the changes from the reviewers. The reviewers gave feedback with clarification of the questions, added additional information about communication and educational setting, and expanded information about what happens in a physical education class.

Data analysis

The demographic, multiple-choice, and closed-ended questions were tallied for frequency. The open-ended questions were transcribed and reviewed for thematic information that supported the data on frequency to allow the researchers to review all the responses and pursue the responses in greater depth (Patton, 2002). Three researchers reviewed the thematic responses and ensured that all the data had been grouped into themes. The themes were developed until saturation was reached with no new data emerging (Patton, 2002).

Results

This study sought to answer five questions in regard to physical education placements and experiences for children with CHARGE syndrome:

* Where was your child with CHARGE syndrome placed in relation to physical education?

* How did your child communicate receptively and expressively during physical education?

* In physical education class, what modifications were used that worked with your child?

* In physical education class, which unit was your child most successful in?

* In physical education class, which unit did your child struggle with the most?

The results are presented according to the question number. Note that in some cases, the percentages did not add up to 100% because some parents did not respond to particular questions.

QUESTION 1

The physical education settings ranged from inclusive physical education (11 children, 42%), a combination of inclusive and segregated physical education (5 children, 19%), and segregated physical education (6 children, 23%); one parent did not answer the question. Segregated classes ranged from 1:1 instruction (1 paraeducator to 1 child with CHARGE syndrome) to 2:1 instruction (2 paraeducators, adapted physical education specialists, or intervenors to 1 child with CHARGE syndrome) to instruction in small-group settings. Of the parents with children in inclusive settings, 8 (38%) said they were satisfied and 3 (14%) said they were unsatisfied with their children's physical education placements. In the segregated setting, 3 (14%) said they were satisfied and 3 (14%) said they were not satisfied. All five parents with children in a combination of inclusive and segregated placements were satisfied with their children's placements. Eight (28%) of the children in inclusive settings, 2 (9%) in segregated settings, and all the children in the combination of settings (57% of the children whose parents answered this question) received 1:1 instruction; 10 (83%) of their parents said they were satisfied with their children's placements and physical education classes. As one such parent wrote: "I think he does better with a 1:1."

The parents who felt satisfied with their children's placements included those with children in inclusive, segregated, and modified physical education settings. Those who were satisfied with their children in inclusive settings stated they were pleased because there were appropriate modifications for their children, their children were each also given a 1:1 paraeducator for support, or both. Parents who were unsatisfied with the inclusive setting made comments such as these: "Would be appropriate if all was modified for actual needs," "No--not appropriate; there is no education happening," and "Not satisfied; as peers get more aggressive and competitive, I feel safety will become an issue."

Eighteen of the 26 (69%) parents said that physical education was part of their children's IEPs, 6 (23%) said that it was not, and 1 (4%) did not know. The parents whose children had IEPs that included physical education said that the IEPs for physical education included various goals, such as balance, posture, throwing, catching, kicking, upper-body and core strength, and socialization.

QUESTION 2

The children with CHARGE syndrome communicated in numerous ways, both receptively and expressively. Of the 23 parents who answered this question, 7 (30%) said that their children used American Sign Language exclusively for communication; 4 (17%) said that their children used verbalization; and 1 (4%) each said that their children copied peers, used picture exchange communication symbols (PECS), used body language, or used an intervenor. Although the majority of the children used only one form of communication, 7 of the 23 (30%) children used combinations. Three (13%) children used both sign language and spoken language, and 1 (4%) each used verbal and written forms of communication; verbal communication and copying of peers; body language, sign language, and gestures; and listening and verbal forms of communication.

QUESTION 3

There are numerous ways to modify activities for children with CHARGE syndrome during a physical education class with their peers. Of the 23 parents who answered this question, 5 (22%) indicated that no modifications were made; 5 (22%) were unsure if any modifications were made and, if modifications were made, they were unsure what these modifications were; 3 (13%) said the rules were modified; 6 (26%) said that the equipment was modified; 2 (8%) said that the activity was modified; 1 (4%) said that the intervenor modified the activities taught for the child; and 1 (4%) said that the child went to a physical education class with a younger grade. One parent reported that while the paraeducator was physically assisting the child, the child fell and broke his arm. It was unclear if the paraeducator was trained in physical education or knew how to support a child with CHARGE syndrome.

QUESTION 4

The parents thought that their children were more successful at individual motor skills, such as jumping, rocking, swinging, bouncing, kicking, and throwing, than at units. The physical education units that the parents noted that their children were successful in were swimming, scooters, bowling, fencing, T-ball, dancing, rock climbing, floor hockey, field hockey and gymnastics.

Each unit that was listed had only one to two children whose parents perceived them as successful, with the exception of swimming, for which five (22%) children were perceived as successful. Eight parents (35%) were unsure of which units were being taught in physical education, and one (4%) did not know which unit was the child's most successful unit.

QUESTION 5

Fundamental motor skills were the units that the parents reported that their children had the most difficulty with in their physical education classes. Motor skills that the children struggled with the most were visual tracking, spatial awareness, running, jumping, skipping, kicking, throwing, and hopping. Units that the children struggled with the most were any game that involved balls, fast-paced games, and team sports. Only one parent was unsure which unit the child struggled with the most.

Discussion

Children with CHARGE syndrome often undergo extended hospitalizations and have a variety of medical problems that affect their motor development, socialization, and overall growth. In this study, 26 parents of children with CHARGE syndrome completed a questionnaire related to the physical education experiences of their children, including placements, modes of communication, modifications, successful units, and difficult units.

The information gained from the placement portion of this study revealed a need to determine carefully each child's placement, for which there is also clear substantiation in the literature (Columna et al., 2010). The children whose parents were the most satisfied with the placements were in a combination of inclusive and segregated classes. This placement seemed to satisfy the children's motor needs and socialization goals. A clear position statement on the approach to placing students with disabilities can be found on the website of the American Association for Health Physical Education, Recreation and Dance (http://www.aahperd.org/aapar/news/positionpapers/index.cfm).

Another finding was that 18 of the 26 (69%) parents said that physical education was part of their children' s IEPs. The IEPs that included physical education had various goals, including balance, posture, throwing, catching, kicking, upper-body and core strength, and socialization. Furthermore, 57% of the children in physical education classes had 1:1 instruction in physical education (1 paraeducator to 1 child); the majority of their parents were satisfied with the placement. A question that we did not ask that would have revealed additional information was whether these paraeducators were trained for physical education (Lieberman, 2007). McKenzie and Lewis (2008) found that physical education was not a training area for paraeducators who work with children with visual impairments. Although Russotti et al.'s (2004) book mentioned adapted physical education, it did not discuss training for paraeducators specifically in physical education. This is an area that would benefit from further research.

Last, when teaching a continuous motor skill, such as swimming, running, biking, or rock climbing, clear breaks must be planned to allow for communication, instruction, feedback and clarity (Arndt et al., 2004). In teaching discrete motor skills, such as in shot put, kicking, bowling, or jumping, there are inherent breaks following each attempt of the motor skill, which should also be used to allow for further instruction and feedback.

Modifications of skills or units are often necessary for children with CHARGE syndrome to experience the same activities as their same-age peers. In this study, modifications for the areas that needed support were provided to the rules, equipment, or activity (see Table 2). In Table 2, the areas that need support, as suggested by the parents, and the modifications and teaching tips are given for each response as suggestions for future programming. In this regard, the Test of Gross Motor Development II (Ulrich, 2000), which tests locomotor and object control, has recently been validated for use with children with visual impairments and can be a valuable tool for instructors (Houwen, Hartman, Jonker, & Visscher, 2010).

Some of the motor skills that were documented in the study as being the most successful were the same as the preferred activities for children who are deaf-blind, according to their parents' responses (Lieberman & MacVicar, 2003). These commonly preferred activities included swinging, throwing, and swimming and related to the units for which the parents thought their children were successful. In Lieberman and MacVicar's (2003) study, swimming was a preferred activity for every age group, as well as the most preferred free-time activity overall. In this study, swimming was chosen by 22% of the parents. This fact is noteworthy because many schools do not have swimming in their curricula, so parents may have to advocate for swimming to be included in their children's IEPs if the schools the children attend have swimming pools.

The findings revealed some clear needs in physical education for children with CHARGE syndrome. In reviewing the parents' responses to the questionnaire, we found four major needs that have to be addressed: the need to work on open and closed skills, the need for trained support personnel, the need to address skills in both a top-down and bottom-up approach, and the need to provide extended time in physical education.

NEEDS TO BE ADDRESSED

Open and closed skills

The results suggest that children with CHARGE syndrome need to work on skills that are related to open motor skills. Open skills are those that have variables that change constantly and are performed in an unpredictable environment, such as when playing volleyball, basketball, tennis, soccer, and handball. Closed skills are those that have variables that are constant and are performed in a relatively predictable environment, such as when performing archery, bowling, shot put, or running. Although some parents thought that their children were not given opportunities to participate safely in the open-skills area, it is imperative that children with CHARGE syndrome be given the opportunity to learn the same curriculum as their peers. Therefore, the modifications that are listed in Table 2 must be considered to ensure successful involvement in both open and closed skills.

Trained support personnel

Another finding was that many children with CHARGE syndrome are more successful with 1:1 instruction by trained support personnel, such a paraeducator, an intervenor, a peer tutor, or an interpreter. For many children with CHARGE syndrome, the 1:1 instruction is imperative because of their need for communication, instruction, and feedback in their area of vision (where they see the best). Children with CHARGE syndrome are unique in so many ways that the proper training of personnel is tantamount, such as basic training programs in physical education for paraeducators (Lieberman, 2007) and peer tutoring (Lieberman & Houston-Wilson, 2009). There is also a classroom guide for paraeducators to assist with children with visual impairments (Russotti et al., 2004). The needs of the child with CHARGE syndrome would have to be added to the training for it to be effective. The training should be provided by a physical education teacher, an adapted physical education teacher, a teacher of students with visual impairments, a deaf-blind specialist, or a special education teacher if applicable. In addition, the inclusion of support personnel should be added to the children's IEPs for physical education if such personnel are not already indicated.

Because of the variety of communication methods that are used with children with CHARGE syndrome and the complications that are associated with the syndrome, it is important to train the staff, including teachers, paraeducators, and intervenors, on the specific mode of communication and how to set up the environment for communication. Doing so means taking the time to understand the purpose, rules, and terminology associated with the equipment being used and to increase the child's understanding of the entire concept of the activity. In addition, learning about the child's previous movement experiences and skill levels on each activity will also help with communication and the development of skills.

Top-down or bottom-up approaches

In addition to teaching open skills and the use of paraeducators, one must consider the method of delivering the curriculum. As was indicated by the parents' responses, children with CHARGE syndrome need additional support to improve their balance, coordination, locomotor skills, and object-control skills. When a skill is taught with only the foundations of the skill in mind, such as grasp and release instead of throwing, balance on a line instead of skipping, or balancing on a balance board instead of riding a bike, it is seen as the bottom-up approach. The bottom-up approach focuses on the foundational skill instead of the outcome. In some cases, the outcome of the skill is the goal, such as throwing, skipping, or bike riding; in other cases, the teacher may focus on the foundation of the skill and never reach the end goal. The balance between teaching a skill in the top-down mode or the bottom-up mode is an issue (Block, 2007). Teachers must determine when they must focus on only the skill-deficit area as opposed to the end goal. In many cases, the end goal is more socially acceptable to focus on in physical education, and that may be a choice for the class.

Expanded physical education to learn basic skills

The findings made it clear that children with CHARGE syndrome need more time in physical education to gain the motor skills necessary to become active participants in sports and other physical activities. In many cases, by the time a child with CHARGE syndrome understands the teacher's instructions, the class has moved on to the next activity. It would be instrumentally helpful in many cases to extend the duration of the physical education class for a child with CHARGE syndrome by having the child come to class 10-15 minutes early or adding time in the physical education classes to give the child an opportunity to review the skills that were taught and to learn the games, movement, or activity with the proper terminology in the child's mode of communication. The parents can work with the school to determine if this time should be 10-15 minutes before the physical education class, before school, after school, part of lunch, or at another time that works with the child's schedule. This time may vary at different times in the school year.

LIMITATIONS

The study was limited by a few variables that could not be avoided. These variables included the fact that the parents were part of a major conference related to children with CHARGE syndrome and thus may tend to be more proactive than the average parent. Also, some parents may not have really clearly known the depth of information about physical education that we asked them. Last, the heterogeneity of this group of children with a low-incidence disability related to age and severity of disability makes these findings hard to generalize to other children with CHARGE syndrome.

FUTURE DIRECTIONS

It is clear that children with CHARGE syndrome can benefit from appropriate physical education experiences. Future research in this area should include the following:

1. A replication of this study with specifics on the training needs of paraeducators related to physical education.

2. A study investigating more specific information on communication methods and which are most successful in inclusive or segregated settings.

3. A study using peer tutors in physical education that addresses the training needs and benefits of using peer tutors.

Conclusion

Physical education is an important component in every child's education, regardless of the child's needs, capabilities, or physical education placement. The decision

on the placements of children with CHARGE syndrome should be individualized. Each child with CHARGE syndrome has unique medical needs and developmental capabilities. This uniqueness is exacerbated by large amounts of missed schooling, including physical education classes and psychomotor experiences.

In addition, communication must be carefully planned and modified to the specific needs of each child with CHARGE syndrome to be effective because many children with CHARGE syndrome have visual or hearing deficits or both. Each child must also be provided with support personnel related to his or her specific needs in physical education who are trained to work with the child in the physical education environment. Last, some children with CHARGE syndrome need additional time in physical education to learn all the concepts and motor skills that their peers are learning in order to include both open motor skills and closed motor skills. This need must be added to the children's IEPs and agreed on by all members of the educational team for it to become a reality.

Children with CHARGE syndrome deserve to be physically active and to be exposed to the same physical education units as their peers. When they are, they will have more sports and recreational options to choose from, which will lead to greater opportunities and therefore more control over their lives, promoting enhanced independence and a better quality of life.

References

Arndt, K. L., Lieberman, L. J., & Pucci, G. (2004). Communication during physical activity for youth who are deafblind. Teaching Exceptional Children Plus, 1(2), Retrieved from http://journals.cec.sped. org/cgi/viewcontent.cgi?article=1005&context=tecplus

Block, M. (2007). Including students with disabilities in general physical education. Baltimore, MD: Paul H. Brooks.

Columna, L., Davis, T., Lieberman, L. J., & Lytle, R. (2010, September). Determining the most appropriate physical education placement for students with disabilities, Journal of Physical Education, Recreation & Dance, 81, 30-37.

Girardi, M. M. (2009). Balance: What is it and how does it work? Paper presented at the ninth International CHARGE Syndrome Conference, Bloomingdale, IL.

Hefner, M., & Davenport, S. (2006, October 17). Clinical diagnosis. Retrieved from http://www.chargesyndrome.org

Houwen, S., Hartman, E., Jonker, L., & Visscher, C. (2010). Reliability and validity of the TGMD-2 in primary-school-age children with visual impairments. Adapted Physical Activity Quarterly, 27, 143-159.

Lieberman, L. J. (Ed.). (2007). A paraprofessional training guide for physical education. Champaign, IL: Human Kinetics.

Lieberman, L. J. (2011). Hard-of-heating, deaf or deafblind. In J. P. Winnick (Ed.), Adapted physical education and sport (5th ed., pp. 262-264). Champaign, IL: Human Kinetics.

Lieberman, L. J., & Houston-Wilson, C. (2009). Strategies for inclusion: A handbook for physical educators. Champaign, IL: Human Kinetics.

Lieberman, L. J., & MacVicar, J. (2003). Play and recreation habits of youths who are deaf-blind. Journal of Visual Impairment & Blindness, 97, 755-768.

McKenzie, A. R., & Lewis, S. (2008). The role and training of paraprofessionals who work with students who are visually impaired. Journal of Visual Impairment & Blindness, 102, 459-471.

Murofushi, T., Ouvrier, R. A., Parker, G. G., Graham, R. I., Siva, M., & Halmagyi, G. M. (1997). Vestibular abnormalities in CHARGE association. Annals of Otology, Rhinology, and Laryngology, 106, 129-134.

Office of Special Education and Rehabilita-tion Services, OSE/RS, 54 CFR (2006).

Pangrazi, R. P., & Beighle, A. (2009). Dynamic physical education for elementary school children (16th ed.). San Francisco: Pearson Education.

Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.

Russotti, J., Shaw, R., & Spungin, S. J. (2004). When you have a visually impaired student in your classroom. New York: AFB Press.

Tegay, D., & Yedowitz, J. (2009, November 13). CHARGE syndrome. Retrieved from http:// emedicine.medscape.com/article/942350overview

Ulrich, D. A. (2000). The Test of Gross Motor Development. Austin, TX: Pro-Ed.

Williams, G. L., & Hartshorne, T. S. (2005). Understanding balance problems in children with CHARGE syndrome. Deaf-Blind Perspectives, 12(2), 5-7.

Lauren J. Lieberman, Ph.D., professor and director of Camp Abilities, Department of Kinesiology, Sport Studies and Physical Education, College at Brockport, Brockport, NY 14420; e-mail: . Pamela Haibach, Ph.D., associate professor and kinesiology coordinator, Department of Kinesiology, Sport Studies and Physical Education, College at Brockport, Brockport, NY 14420; e-mail: . Haley Schedlin, M.Ed., physical education teacher, DAKE Junior High School, West Irondequoit School District, 350 Cooper Road, Rochester, NY 14617, e-mail: .

The authors thank the CHARGE Syndrome Foundation and Camp Abilities Brockport for their support of the research project described in this article.
Box 1

Sample questions from the questionnaire

15. How does your child communicate receptively and expressively
during physical education?

16. In physical education class, what modifications are used that
worked? Please be specific if you can. For example, do they use a
larger ball in games? Do they use modified rules in volleyball?

17. In physical education, what unit was your child most successful
in? Did your child swim, do track and field, do weight training, or
parachute?


Table 1
Demographic characteristics of the children with CHARGE syndrome
(N = 26).

                 Components of CHARGE             Physical education
Age              syndrome                         setting

0-6 years        Coloboma of the eye              Inclusive physical
(n = 4)          Deafness                         education with an
                                                  intervenor

7-11 years       Deafness                         Combination
(n = 18)         Coloboma of the eye              Inclusive
                 Growth retardation               Adapted physical
                 Heart anomaly                     education
                 Genital gypoplasia               Self-contained
                 Ear malformations                Small group
                 Choanal atresia or stenosis
                 Mental retardation
                 Cleft lip and palate
                 Hormone deficiency

12-15 years      Coloboma of the eye              Inclusive
(n = 2)          Mental retardation               No physical
                 Choanal atresia or stenosis       education
                 Deafness
                 Ear malformations
                 Growth retardation
                 Cleft lip and palate

16 years or      Deafness                         Adapted physical
older (n = 2)    Visual impairment                 education
                 Hormone deficiency               Inclusive

Table 2
Programmatic ideas for physical education and children with
CHARGE syndrome.

Area needing      Modification                  Teaching tip
support

Balance           Sighted guide                 Use a guide wire
                  Guide wire                    while participating
                                                in the FITNESSGRAM
                  Use of a wall                 Pacer assessment.
                  Holding onto a stable
                  object

Vision issues     Tactile objects               The student has a
                  Tactile boards of the         tactile board of the
                   playing field,               layout of the pool
                   gymnasium, or pool           area and locker
                                                rooms. Any safety
                  Brightly colored              areas are outlined
                   objects or                   in bright colors.
                   equipment                    Braille or large-
                  Larger objects or             print signs are
                  equipment                     posted next to
                  Equipment with a sound        important areas of
                  ball with sand inside         the pool and locker
                   that moves slowly            room.
                   when kicked

Need for 1:1      Intervenor                    Write in the need
personnel         Trained paraeducator          for the support
                  Trained peer tutor            personnel on the IEP
                                                to
their and ensure
                                                presence support.

Tracking          Use of sound                  During a soccer
objects           Larger objects or             unit, a larger
                  equipment                     soccer ball that has
                  Slower-moving objects or      bells or a beeper
                  equipment                     inside it should be
                  A slower surface              used to slow down
                                                the speed of
                                                movement. The sound
                                                will help the
                                                student track the
                                                soccer ball more
                                                efficiently. Have
                                                the student play on
                                                grass or turf to
                                                help slow down the
                                                speed of the soccer
                                                ball. Deflate the
                                                ball, so it does not
                                                roll as quickly or
                                                as far.

Motor skills      Physical guidance             Use the teaching
(throwing,        Tactile modeling              technique that best
kicking,          Demonstration                 suits the child for
batting,          Verbal explanations           a particular
catching, and                                   situation and skill.
rolling)          Guide wire                    It is important to
                  Sighted guide                 discuss the teaching
                                                technique with the
                                                student, parent,
                                                paraeducator, or
                                                intervenor before
                                                the unit occurs.

Team sports       Modification of rules         During a baseball
                  Modification of equipment     game, a modification
                  Modification of boundaries    of boundaries may be
                  Modification of instruction   a smaller playing
                                                field. Modification
                                                of rules may be the
                                                addition of two
                                                additional throws
                                                before the ball is
                                                thrown to the base
                                                the student is
                                                running to.
                                                Modification of
                                                equipment may be a
                                                larger bat, a larger
                                                baseball, or a
                                                lighter ball with
                                                sounds or a brighter
                                                color. Place beepers
                                                or sound boxes
                                                behind the bases.
                                                Modification of
                                                instruction could be
                                                the use of an
                                                intervenor, peer
                                                tutor, or
                                                interpreter.

Ball sports       Larger objects or             With the student,
                  equipment                     determine the size,
                  Equipment with sounds         texture, speed, and
                  Brightly colored objects      color of the ball.
                   or equipment                 Ensure that the
                                                preferred ball
                                                is available and
                                                have the student
                                                practice with the
                                                ball before the unit
                                                to make sure that he
                                                or she can use it
                                                successfully.

                  Modification of rules
                  Modification of equipment
                  Modification of instruction
                  Modification of boundaries
                  Physical guidance
                  Brailling
                  Demonstration
                  Verbal instruction

Locomotor         Physical guidance             Teach the skill as
skills            Brailling                     whole-part whole.
(running,         Demonstration                 Show the child the
jumping,                                        whole skill before
galloping,        Verbal explanations           you teach the parts.
skipping,         Guide wire                    Break down the skill
hopping)          Sighted guide                 into parts with the
                                                preferred teaching
                                                technique. Ensure
                                                that the child
                                                understands what is
                                                expected.

Source: Lieberman (2011).
Gale Copyright: Copyright 2012 Gale, Cengage Learning. All rights reserved.