Updated 01/07

This is a partial list of materials on this topic available from DB-LINK. In most instances, DB-LINK is able to provide a copy of the complete article. For this and other questions or information that you may need, please contact DB-LINK, (800) 438-9376 or (800) 854-7013 (TTY) or email: dblink@tr.wou.edu.

2005-0136

Adaptive behavior in children with CHARGE syndrome --Salem-Hartshorne N.; Jacob, S. American Journal of Medical Genetics, Vol 133A, Issue 3, March 15, 2005. (2005) The "R" in the mnemonic "CHARGE" has historically stood for "Retardation of Growth and Development." Early medical reports describing mental retardation in CHARGE syndrome have not used convincing means to assess this attribute. This article investigated the range of developmental ability in individuals with CHARGE as measured through an adaptive behavior scale, the Adaptive Behavior Evaluation Scale (ABES) [Carney (1995): The Adaptive Behavior Evaluation Scale home version technical manual-revised. 126p.], over time. Parents of individuals with CHARGE syndrome were surveyed twice over a 4-year time span (N=100, 85) to obtain information about adaptive behavior and specific CHARGE characteristics. There was a significant decline in ABES scores over the 4-year period. However, at Time two, one-half of the children achieved a standard score above 70. Correlation and regression analyses at Time one and Time two revealed negative relationships between (a) age at walking, (b) degree of hearing impairment, (c) degree of visual impairment, and (d) medical involvement variables and the dependent variable, adaptive behavior. In both studies, age at walking was the best predictor of scores. Analysis of variance confirmed that medical involvement and degree of vision impairment were related to adaptive behavior scores because they were also related to age at walking. Age at walking and medical involvement at Time one were found to be significantly different between those who improved and declined in adaptive behavior scores over time. Adaptive behavior scores from both studies revealed a much broader and higher-reaching range of ability for this population than has been previously reported in the literature. Copyright (c) 2005 Wiley-Liss, Inc. Available on the web.

2005-0177

Adolescent and Adult Issues in CHARGE Syndrome --Blake, Kim D.; Salem-Hartshorne, Nancy; Daoud, Marie Abi; Gradstein, Janneke. CLINICAL PEDIATRICS, vol. 44, #2, March 2005, pp. 151-159. (2005) Very little information has been published about adolescents and older individuals with CHARGE syndrome (coloboma, heart defects, atresia choanae, retarded growth and development, genital hypoplasia, ear anomalies and deafness). This paper describes the results of a study that identified the unique issues faced by adolescents and adults with CHARGE. Descriptive information was gathered from parents of patients with CHARGE, and/or the patients themselves, about their developmental, medical, educational, and social history. The resulting body of information provides important insights into the prognosis and special needs of individuals with CHARGE, as well as further research questions.

2004-0437

Can CVI* Co-Exist With Other Ocular Impairments in CHARGE? : A Parent's Perspective --Lauger, Kim. CHARGE ACCOUNTS, vol. 13, #2, Summer 2003, pp. 2-4. (2003) This article tells the story of Dylan, as written by his mother, and their work with doctors on both CHARGE and Cortical Visual Impairment (CVI). Included are descriptions of visits with doctors and educators, as well as a section on the current debate about CHARGE/CVI. Also includes a fact sheet on CVI with definition, cause, characteristics, behavioral/visual characteristics and contact information.

2002-0204

CHARGE Association : Symptoms, Behaviour and Intervention --Lewis, Chris; Lowther, Juliet. EDUCATIONAL PSYCHOLOGY IN PRACTICE, vol. 17, #1, 2001, pp. 69-77. (2001) This paper reviews current knowledge on CHARGE Association. It considers aspects related to social behavior and factors to be considered when planning educational interventions with this low incidence group of children who have more significant additional needs. The purpose of this paper is to describe the main features of CHARGE syndrome, to note the incidence, and look at its impact upon learning and behavior, and to consider the implications for intervention.

2002-0256

CHARGE Syndrome --Brown, David. Presentation at the California Coming Together Conference, San Diego, May 16, 2002. (2002) This document present's a teacher's description of CHARGE Syndrome at the California Coming Together Conference on Deaf-Blindness. The presenter reviews possible causes and recurrence risks of the syndrome and provides diagnostic criteria and developmental implications such as problems with balance, vision, hearing and communication development. It also includes a list of what educator's need to know about working with a student with CHARGE Syndrome, and contact information for the CHARGE Syndrome foundation.

2004-0294

CHARGE Syndrome : Educational and Technological Interventions --Griffin, Harold C.; Davis, Mary Lynne; Williams, Sarah C. RE:VIEW, vol. 35, #4, Winter 2004, pp.149-157. (2004) Reviews the physiological characteristics of CHARGE Syndrome; educational interventions including communication and motor development strategies; and the use of technology to stimulate exploration, promote understanding of cause and effect, develop self-help skills, and teach language.

2006-0075

CHARGE Syndrome : A Management Manual for Parents --Hefner, Meg, M.S. (Ed.); Davenport, Sandra H.L., M.D. (Ed.) Columbia, MO: CHARGE Syndrome Foundation, Inc. (2002) The manual contains a brief history of the CHARGE Foundation, parent stories about major medical and developmental issues impacted by CHARGE, an article by Sandra Davenport on the influence of sensory loss on development, and a section on the medical aspects and management of CHARGE Syndrome. The medical section is divided into sub-sections according to areas of the body. Each sub-section has two parts: a doctor section and a parent section. The sections for physicians are written by medical specialists and are brief and use medical terminology. Parents are encouraged to make copies of the physician section to give doctors. The sections written for parents offer more background information, explain medical terminology and use diagrams. Forms that parents can use to keep track of information needed for medical appointments and case management are included. The manual also contains a glossary and resource section. This is an updated version of a previous manual published. It was updated in 2002. The manual is available full text from the CHARGE Syndrome Foundation website or can be ordered for $25.00 by phone (573) 499-4694 (voice/fax) or order form is available from the website. Available on the web: http://www.chargesyndrome.org/resources-manual.asp. Publisher's web site: http://www.chargesyndrome.org.

2005-0143

CHARGE syndrome "behaviors": challenges or adaptations? --Brown D. American Journal of Medical Genetics, Vol 133A, Issue 3, March 15, 2005, 268-272. (2005) Sometimes behaviors reported as challenging are more often adaptive responses to severe levels of multi-sensory impairment. A therapy/educational response may be more productive. Multi sensory is more than deaf-blind. Issues related to balance, hearing, vision, and cranial nerve anomalies are discussed. These are followed by comments about sensory integration (SI) and communication. Finally there are examples of behaviors that were moved into “non-challenging” category by taking a multi-sensory perspective toward them. Available on the web.

2005-0109

Charge Syndrome Characteristics --Davenport, Sandra L.H. Austin, TX: Texas Deafblind Project. 2005 Texas Symposium on Deafblindness. (2005) Updated description of CHARGE, findings by the acronym: C for Coloboma, cranial nerve problems; H for heart malformations; A for atresia or stenosis of the choanae; R for retardation of growth or development; G for genitourinary anomalies; E for ear anomalies and other findings beyond the acronym.

2003-0200

CHARGE Syndrome Research Summaries CHARGE ACCOUNTS, vol. 12, #3, Fall 2002, pp. 6-11. (2002) This article provides a summary of research and results of several studies involving CHARGE syndrome. Looks at a current study trying to identify the gene(s) involved in CHARGE syndrome. Shows results from studies looking for a gene to studies ruling out a gene responsible for the syndrome. Discusses a future study to look at risk factor patterns. Other studies discussed include looking at puberty and growth in CHARGE and hearing loss in children with CHARGE. Studies involving the behavioral characteristics of CHARGE including challenging behaviors and features of CHARGE are included as well.

2004-0598

Chracteristics [sic] and Development of Children with CHARGE Association/Syndrome --Salem-Hartshorne, Nancy; Jacob, Susan. JOURNAL OF EARLY INTERVENTION, vol. 26, #4, pp.292-301. (2004) Parents of children with CHARGE were surveyed and asked to indicate whether their child had various features commonly found among individuals with CHARGE (e.g., vision or hearing impairment) and to complete an adaptive behavior scale for their child. One hundred parents completed surveys. Adaptive behavior scores revealed a broader and higher-reaching range of development for this population than previously reported, with about half achieving normal range scores. Correlation analyses revealed negative relationships between (a) degree of deaf-blindness, (b) age at walking, (c) degree of hearing impairment, and (d) medical involvement variables and the dependent variable, adaptive beharior. Age at walking had the strongest relationship to adaptive behavior scores. Implications for future research and practice are discussed.

2005-0446

Early Oral Sensory Experiences and Feeding Development in Children with CHARGE Syndrome : A Report of Five Cases --Dobbelsteyn, Cindy; Marche, Darlene M.; Blake, Kim; Rashid, Mohsin. DYSPHAGIA, 20, pp. 89-100. (2005) Children with CHARGE Syndrome commonly experience feeding and swallowing problems. Difficulties may be associated with congenital structural anomalies, motor impairment, or oral sensory impairment. For many children, the introduction of functional oral feeding is delayed and there are often long-term feeding complications. Oral aversion or defensiveness is a frequent serious issue but it is uncertain whether this is a primary sensory disorder or secondary to delayed or negative oral sensory and feeding experiences. This article examines the early oral sensory and feeding experiences of five children through a review of medical records and caregiver questionnaires. Findings indicate variable early oral sensory experiences, with all of the children having some difficulty or delay in the development of oral feeding and swallowing. The nature of these difficulties and potential contributory factors are discussed.

2004-0150

Educational and Behavioral Implications of Missing Balance Sense in CHARGE Syndrome --Brown, David. California Deaf-Blind Services. RESOURCES, vol. 10, #15, Spring 2003, pp. 1-5. (2003) This article addresses the pervasive missing sense of balance among people with CHARGE syndrome. It provides information on the possible causes of this, as well as related issues such as low muscle tone, equilibrium problems, and the links between balance and hearing/vision. Also included is a description of sensory integration dysfunction and suggestions for parents and educators. Available on the web: http://www.sfsu.edu/~cadbs/Spring03.pdf.

2005-0144

Factors related to the development of communication in CHARGE syndrome --Thelin JW; Fussner JC. American Journal of Medical Genetics, Vol 133A, Issue 3, March 15, 2005. (2005) Parents of 28 children and a young adult with CHARGE syndrome participated in a survey on factors related to communication development. Information was obtained using a questionnaire and a follow-up interview. Parents were asked to (1) specify their child's primary mode of communication, (2) judge the significance of the effects of physical disorders, sensory deficits, and behavior on development and communication, (3) provide lists of their child's conditions and disorders, and (4) provide information about intervention related to communication and education. Thirty-nine percent of the participants (11/28) did not use symbolic language to communicate. The results suggest that factors affecting the majority of participants--physical disorders, vision loss, and hearing loss--may adversely affect communication ability. However, these factors did not preclude the development of symbolic language. Factors that were related to the development of symbolic language were success in the treatment of hearing loss with amplification, the ability to walk independently, and communication training initiated by 3 years of age. Other factors that may be related to the development of symbolic language are also discussed. Copyright (c) 2005 Wiley-Liss, Inc. Available on the web.

2005-0427

Hearing, Hearing Aids and Implants in CHARGE Syndrome --Thelin, James W. Miami Beach, FL: 7th International CHARGE Syndrome Conference, July 22nd - July 24th, 2005, Miami Beach, Florida. (2005) This paper is divided in three sections, hearing, hearing aids and implants. Each section has a section called personal factors which has a list of questions that help personalize the information. Each section also has a list of factors that discuss specific CHARGE related things relating to hearing, hearing aids or implants.

2004-0415

Increasing the Effectiveness of Communication and Language : Being "In the Zone" --Stremel, Kathleen. Cleveland, OH: Proceedings of the 6th International CHARGE Syndrome Conference, July 25-27th, 2003, Cleveland, OH. (2003) This presentation provides a checklist that parents can use to determine how their children might be more effective communicators. The presentation also emphasizes how specific interactive techniques that are "in the zone" may be implemented in order that children become more effective communicators. These techniques include using: joint attention, joint activities, turn-taking activities, full routines, tangible feedback and reinforcement systems, systematic instruction (school-home), scaffolding, and conversational topics and turns. Also available is a CD-ROM containing an audio version of this presentation.

2006-0245

Individuality Within a Syndrome : Two Faces of CHARGE --Weir, Lisa; Fice, Angela. Brantford, Ontario: Canadian Deafblind and Rubella Association. 13th DbI World Conference on Deafblindness Conference Proceedings, August 5-10, 2003, Mississauga, Ontario, Canada. (2003) This is the text of a workshop presentation given at the 13th DbI World Conference on Deaf-Blindness. The paper describes two children born with CHARGE and the variations between the two children. Their parents want to illustrate the individuality of persons born with CHARGE syndrome

2006-0023

The Intervener : Big Idea, Substantial Results --D'Luna, Debra. CA: California Deaf-Blind Services. reSources, Winter 2006, Vol 12, #2, p.1-4. (2006) The author is a parent of an 18 year old daughter, Alexis, who is deaf-blind as a result of CHARGE Syndrome. In this article the author describes Alexis's educational experiences from pre-school through high school and the significant role interveners have played in making her educational experiences successful. The article describes various ways that Alexis's intervener facilitated her successful inclusion in academic and social settings. Available on the web: http://www.sfsu.edu/~cadbs/Winter06.pdf.

2002-0107

It Sounds Nice, But is Inclusion Really Worth It? --Hartshorne, Nancy, Ed.S. DEAF-BLIND PERSPECTIVES, vol. 9, #2, Winter 2001/2002, pp. 12-13. (2001) This article gives a parent's perspective on inclusion, specific to a boy with CHARGE syndrome and deafblindness. His mother, also a school psychologist, describes his school program and what may have happened if he had not been included in some regular education classrooms. Available on the web: http://www.tr.wou.edu/tr/dbp/pdf/dec01.PDF.

2005-0110

Medical & Development Issues in CHARGE Syndrome --Davenport, Sandra L.H. Austin, TX: Texas Deafblind Project. 2005 Texas Symposium on Deafblindness. (2005) This article contains brief descriptions of medical management issues including: swallowing problems, gastroesophageal reflux, compromised airway, recurrent otitis media, middle ear bone malformations, sinusitis, scolliosis, detached retinas, short stature, disturbed sleep cycles and chronic constipation. Development issues are also briefly described and include input impairment, output impairment, intelligence and psychological assessment, and behavior issues.

2005-0428

Mistaking Courage for Denial : Family resilience after the birth of a child with CHARGE Syndrome --Hartshorne, Timothy. Miami Beach, FL: 7th International CHARGE Syndrome Conference, July 22nd - July 24th, 2005, Miami Beach, Florida. (2005) Copy of a PowerPoint presentation describing a model of stress and resilience. Identifies and A,B,C, X model, with A being the stressor event, B - perception, C - resources, X- coping outcome. Lists out research findings, influences on perceptions, appraisal of meaning, professional misunderstanding and parent binds, family needs and outcomes such as sense of community and marathon skills.

2005-0408

Physical Influences on the Development in CHARGE : Influence of Sensory Loss on Development, The communication bubble --Davenport, Sandra. Miami Beach, FL: 7th International CHARGE Syndrome Conference, July 22nd - July 24th, 2005, Miami Beach, Florida. (2005) Article discusses the impact of hearing and visual impairments on a child's ability to take in information. Also introduces the concept of the communication bubble, that is the physical area in which the child can see and/or hear, to receive information from the communication partner. Includes a diagram of external and internal physical influences that have a profound effect on the child's development and understanding of the world.

2004-0410

School Issues for Parents --Brown, David, M.A. Cleveland, OH: Proceedings of the 6th International CHARGE Syndrome Conference, July 25-27th, 2003, Cleveland, OH. (2003) This presentation describes some of the main features of CHARGE Syndrome that are likely to impact on educational programming and classroom management. Describes the importance of individualizing the educational program, working as an inter-disciplinary team, and adopting a whole-child approach. Also available is a CD-ROM containing an audio version of this presentation.

2004-0411

School Issues for Teachers : Education of Children Who Have CHARGE Syndrome --Majors, Martha M.; O'Donnell, Kimberly; Stelzer, Sharon. Cleveland, OH: Proceedings of the 6th International CHARGE Syndrome Conference, July 25-27th, 2003, Cleveland, OH. (2003) This presentation focuses on three major topics related to the education of children who have CHARGE Syndrome. They are communication strategies, curriculum access, and educational strategies. Reviews the types of curriculum that should be available across school settings. Describes the development of a communication system. Brief case studies are discussed to give examples of how students have developed communication skills using both sign language and a visual such as pictures. Describes specific teaching strategies that support success in the classroom/home setting. Also available is a CD-ROM containing an audio version of this presentation.

2004-0407

Toileting and Sleep --Williams, George, M.D. Cleveland, OH: Proceedings of the 6th International CHARGE Syndrome Conference, July 25-27th, 2003, Cleveland, OH. (2003) This presentation describes the difficulties that some children with CHARGE syndrome have with sleep and hygiene. Describes The Albany Sleep Problem Scale, and the responses received from this survey. Presents a holistic management plan that incorporates the physiology and disordered patterns of sleep. Also available is a CD-ROM containing an audio version of this presentation.

2005-0195

Understanding Balance Problems in Children with CHARGE Syndrome --Williams, George; Hartshorne, Timothy. OR: Deaf-Blind Perspectives, vol. 12, #2, Winter 2005, pp. 5-7. (2005) Balance problems are common in children with CHARGE Syndrome as a result of damaged or missing vestibular organs. This creates problems not only with balance, but with the attainment of gross and fine motor skills, the coordination of eye movements, and possibly overall development and learning. The early warning signs of vestibular problems are discussed as are assessment and activities to enhance vestibular function. Available on the web: http://www.tr.wou.edu/tr/dbp/jan2005.htm#charge.

2006-0264

Vision and Vestibular Aspects to CHARGE Syndrome : Implications for Communication, Education, and Assessment --Gloyn, Ann, B.Ph.Ed., B.A., B.Ed. Brantford, Ontario: Canadian Deafblind and Rubella Association. 13th DbI World Conference on Deafblindness Conference Proceedings, August 5-10, 2003, Mississauga, Ontario, Canada. (2003) This is the text of a workshop presentation given at the 13th DbI World Conference on Deaf-Blindness. The paper describes vision and vestibular aspects of CHARGE syndrome.