insightful

A mother of a daughter with CHARGE wrote the following article for a Deaf-Blind Awareness week publication in IL. I came across it during one of my internet searches for information on CHARGE and I thought it was worth sharing.


CHARGE syndrome is becoming one of the leading causes of congenital deaf-blindness. Consider this. At its worst, CHARGE strips a child of all senses. Vision, hearing, and balance can be absent due to malformations of the eye and any or all parts of the inner and middle ear. Taste can be eliminated due to prohibition of oral feeding caused by swallowing problems, severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be absent due to problems with the olfactory nerve. Touch can be reduced due to severe sensory defensiveness and integration issues.

Obviously, a child with such severe sensory limitations will be a challenge in the classroom. How do you tap into a child's intellect when all of the sensory pathways are impeded? The question boggles my mind. I'm speechless at the thought of it. (Those who know me understand that I am not often speechless!) David Brown, a California Deaf-Blind Educator and CHARGE Specialist put it this way: CHARGE is "medically and developmentally, one of the most complex conditions that we know. Children with CHARGE are also likely to be amongst the most truly 'multi sensory impaired' people you will ever meet, having difficulties not just with vision and hearing but also with the senses that perceive balance, touch, temperature, pain, pressure, and smell. The many different anomalies associated with CHARGE will each impose different, varying, and often, conflicting demands upon the child."  With the worst-case scenario in mind, my daughter is doing incredibly well. She can see out of one eye. She can hear with one ear. After using a feeding tube in infancy, she can now eat virtually anything. After years of sensory issues, she is gaining more and more control over her own sensory state. Her balance is a bit shaky - but it's there.

To the outsider, to the untrained eye, she functions well. She seems to see "okay". She seems to hear "just fine". She gets around "okay". Everything looks different - but "okay". What is unseen is the invisible effort it takes for her to appear to function so well. It's hard to imagine the effort it takes to keep her body straight in the chair, to keep her visual and auditory attention focused on the task at hand, to keep her pencil steady in her unusually limber and uncoordinated little hand. She is getting sensory input from all 5 senses - but all of the information is slightly skewed or incomplete. Somehow, she manages to create a fairly decent, but unique, view of her world from all of that incomplete and slightly inaccurate input.

How do we ensure that the view she is creating and the concepts she is developing are correct? How do we ensure that she gets as accurate and complete information as possible? How do we adjust her day for the fatigue that comes from all the effort it takes to simply "be"? How do we fit all of the necessary therapies (OT, PT, speech, O&M, and more) into her school day without losing time for academics? How do we support her social development when her experience of the world is so vastly different from her age-mates?

I can assure you that a typical classroom teacher in a typical school district with typically available special education supports cannot answer the above questions. Specialists in deaf-blindness with experience and understanding of the complexities of the multiple impairments of CHARGE are absolutely necessary for the success of my daughter and other children like her. Specialized supports must be available around the country in order for children with multiple and complex impairments, including deaf-blindness, to be understood and to be supported to succeed.