www.deafblindtip.com Created by Susanne Morgan Morrow, MA, CI, CT Do not copy or distribute without
Understanding the Communication Needs of Individuals with CHARGE Syndrome Susanne Morgan Morrow, MA, CI, CT RID CEUs sponsored by Millneck Interpreter Service
Webinar Etiquette • Use the chat box to ask questions, refrain from side bar chats to distract other participants • View the presentation (live or via recording) in its entirety • Complete evaluation at the end for RID CEUs
Learner Objectives • Demonstrate an understanding of the individual components that represent the 'CHARGE' acronym. • Identify the typical visual impairments associated with CHARGE Syndrome that may have a significant impact on accessing sign language production. • Identify successful strategies to assist with the flow and comprehension of an interpreted message for individuals with CHARGE Syndrome.
What is CHARGE Syndrome?
What is CHARGE Syndrome? • formerly known as CHARGE Association • syndrome caused by a genetic disorder • occurs in about one in every 9-10,000 births worldwide. • extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. • usually no history of CHARGE in the family www.chargesyndrome.org
What is CHARGE Syndrome? • often born with life-threatening birth defects, including complex heart defects and breathing problems. • many surgeries and other treatments. • swallowing and breathing problems make life difficult. • most have hearing loss, vision loss, and balance problems which delay their development and communication. www.chargesyndrome.org
Major Characteristics in CHARGE
(C) Vision Coloboma Coloboma of the eye: - cleft in a part of the eye that can effect the iris, retina or optic nerve.
Cleft in the iris
Colobomas & Vision Loss • coloboma at the back of the eye, on the retina, which has the main implication of causing a visual field loss. • instead of that full visual field that two healthy eyes should be seeing, there are going to be areas missing. • some people have a coloboma only in one eye on the retina, some have them in both eye
~David Brown
~David Brown
(H) Heart Defects Heart problems vary: -Can be mild or significant -Occurs in 75% of children
(A) Nasal Atresia of the Chonae • Narrowing or blockage of the nasal passage • Results in cleft lip, cleft palate, incomplete closures throughout the nasopharynx • Difficulties or impossibilities with swallowing or eating by mouth • Affects speech and eating • Most children are G-tube fed in developmental years
Obstruction in the nasal passage
(R) Growth Retardation in physical growth & development • Retardation of Growth or Development - Not necessarily mental retardation - Usually normal birth height/weight Slower growth shows near 2 years. - Short stature - Possible growth hormone deficiency - Developmental delays can be caused by reduced vision and hearing, repeated hospitalizations, feeding and swallowing problems.
(G)Genitalia • Genital abnormalities: - Males: small penis, undescended testes - Females: small labia, small or missing uterus, split wall in uterus - Both: lack of puberty without hormone intervention
(E) Hearing Ear anomalies: •Unusual shape of outer ear, malformed bones of the ossicles (conductive loss), •malformed cochlea and •small or absent semicircular canals (sensorineural loss)
Some Other Features of CHARGE • Cranial nerve abnormality- can effect smell, swallowing, aspiration and cause facial palsy. • Cleft lip/palate • Kidney abnormalities • Behavioral patterns- high anxiety levels, compulsive behavior • Other common feature can include: hypotonia, sloping shoulders, scloliosis. • Reports indicate that during adolescence there can be delayed puberty, osteoporosis and an increase in some medical issues but research has not confirmed these findings.
Behaviors Associated with CHARGE • Autistic like Behaviors • Obsessive Compulsive Behaviors • Attention Deficit Hyperactivity Disorder • High Pain Threshold • Social Immaturity • It is believed by many that these behaviors may be linked to sensory issues and delayed development caused by excessive medical intervention early in life and not a manifestation CHARGE itself. Taken from CHARGEof Syndrome Foundation-Medical Management Issues
Medical Issues that can Impact Education • Swallowing difficulties- usually improves within first 3 years of life. • Gastroesophageal reflux • Inability to be anesthesized • Chronic Otitus Media • Sinusitis • Hearing aids falling off (due to ear shape) • Detached retinas- complication of colobomas • Short stature-may present social/physical issues • Sleep cycles • Chronic constipation Taken from CHARGE Syndrome Foundation-Medical Management Issues
How can the vision loss in CHARGE Syndrome affect accessing sign language?
Issues Related to Communication • Facial paralysis • Seems no comprehension/lack of backchanneling • Challenging for communication partners • Needs to establish feedback system • Check for comprehension, avoiding “understand?”
Close/Low Vision • An individual with “Low Vision” or “Close Vision” has impaired acuities
• Refers to a measure of our central vision – Distance & clarity – Measured against a scale of normal vision, 20/20. – As the bottom number increases (i.e. 20/60, 20/160, 20/200, 20/400, etc.) the more impacted the vision
Major Major Factors Factors Affecting Affecting Access Access to to Sign Sign Language Language for for People People with with CHARGE CHARGE Syndrome Syndrome
Communication Strategies • Consider use of tactile strategies even if functional vision • Introduce various tactile communication strategies • Touch for attention • Touch for connecting to people and things in environment
Photo courtesy of: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=charge
EVALUATIONS/CEUS Complete the RID evaluation: http://www.surveymonkey.com/s/V2 Y723Y Any questions? Email us at: deafblindtip@gmail.com