Academic journal article Education & Treatment of Children

CHARGE Syndrome: An Educators' Primer

Academic journal article Education & Treatment of Children

CHARGE Syndrome: An Educators' Primer

Article excerpt

Abstract

This paper introduces educators to CHARGE syndrome (CS), a multiple anomaly developmental syndrome that is usually accompanied by some degree of hearing and visual impairment. We describe the defining medical characteristics of the syndrome, and following this, outline the behavioral features commonly seen in individuals with CS. Throughout, we highlight the implications for the inclusive education of children and youth wth CHARGE syndrome. Recommendations focus on Positive Behavioral Support strategies, and we provide an illustrative school-based case study.

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The prevailing philosophy of inclusion for children with special needs within educational settings (Slee, 2001) means that educators must be prepared to address the needs of children with developmental conditions that are both complex and unfamiliar. CHARGE syndrome is one relatively newly described complex developmental syndrome. Children with CHARGE syndrome face many challenges (e.g., medical, behavioral, and learning) that can interfere with their educational success. There is limited literature related to educational best practices for children with this condition, but a recent surge of behavioral research (e.g., Bernstein & Denno, 2005; Hartshorne, Hefner, & Davenport, 2005; Smith, Nichols, Issekutz, & Blake, 2005) has yielded information that may enable educators to anticipate better the types of programs that could benefit students with CHARGE syndrome.

For the present purpose, an extensive, systematic literature search of electronic databases related to the fields of education (Educational Resources Information center [ERIC]) and psychology (PsycINFO) was conducted for articles related to CHARGE syndrome. This paper integrates this current psycho-educational literature with medical information about CHARGE syndrome, providing an overview of the syndrome and its behavioral manifestations, with a specific focus on educational implications. Of note, this paper is designed for educators, and is intended to provide information on CHARGE syndrome that will allow them to better understand, and to provide educational programming for a student with this syndrome. Specific information on medical and behavioral characteristics is included, as well as positive support strategies and suggestions for the classroom.

Introduction

CS was first identified only in the late 1970's (Hall, 1979). The acronym CHARGE was coined (Pagon, 1981) to highlight the association of a group of symptoms existing from birth:

* Coloboma of the eye is a cleft or failure of closure during development of the eyeball. It can affect the lens, choroids, optic disc, retina and/or iris, and may cause blindness, restricted vision, acuity, and many other related problems of a child's visual field.

* Heart Defects are common and vary in type and severity. Treatment includes surgery and ongoing medical management.

* Choanal Atresia is a blockage or narrowing of the nasal passages by bone or cartilage. A complete blockage of both passages is a neonatal emergency requiring urgent surgery and periodic follow-up. This problem may result in difficulty with breathing and eating.

* Retarded Growth and Development occurs in most children, although the extent of either type of delay varies.

* Genital Hypoplasia is typically observed in males (e.g., small penis, undescended testes). It is common for both males and females to receive hormone therapy to help them achieve puberty.

* Ear Anomalies/Deafness are frequent in CHARGE syndrome. Children often have both unusually shaped external ears and some degree of hearing loss (due to abnormalities of internal structures).

The acronym represents the most common features of CHARGE syndrome as it was initially described. Previous diagnostic criteria required four of the six features to be present. However, over the years, other features commonly associated with those first identified in "CHARGE" have been reported, notably cleft/lip palate and cranial nerve dysfunction. …

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