Deaf-Blind Awareness week -- beware... this is long

[Guest guest]

I am asking for your review of the following article I've written for a

Deaf-blind Awareness week publication in IL. It's a bit long so delete and

move on if you don't have time. I just want to be sure I'm clear and

accurate. Thanks in advance to any of you who have the energy to review

this for me!

Michele W

Aubrie's mom

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!)

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 to 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.