TRUTH IS SETTING HIM FREE, 10/27/2001
According to a report of the House Ear Institute dated October 28, 1997, “Benjamin Boisot was seen for Auditory
Neuropathy research purposes and clinical follow-up. Benjamin has a vision disorder, developmental delays, and
a history of respiratory problems. Parents report he can maneuver in his wheelchair and whirl-a-wheel and he is
able to follow some simple directions. He was first seen at the House Ear Institute CARE Center in March 1992.
At that time behavioral evaluation revealed no consistent response to sound, auditory brainstem response was
absent, and ototacoustic emissions were present bilaterally.”
For years, every night at bedtime, I have a conversation with Ben before turning out the lights. Even though Ben
is diagnosed as profoundly deaf, and blind, he participates in these conversations with smiles, and vocalizations.
He understands. Each night I promise that someday I will become smart enough to know more about what is
deeply on his mind, and have a better understanding of who in his life he likes and dislikes. I have promised I will
one day know what he worries about most, and what he wants to do and be.
I feel the same about Ben’s right as a human being to be included in his community with dignity as I do about
respecting his thoughts, his ability to have them, and his inherent desire to make decisions about his own life.
These qualities exist in every living soul.
I worry about advocates who do not share these views and believe the Bens of the world cannot speak for
themselves. They have an influence on the rest of society and it hinders progress toward successful community
living and the inclusion of people with disabilities. It makes a difference in my son’s life now, and it will in the
future. I don’t like it.
A while ago, I told readers I would write an article about self-determination and why it is possible for people with
the most profound disabilities to achieve – an important message that will work to eliminate the influence of the
non-believers. This is not the only article I will write on this subject, but something important happened recently
that I had to share first.
The skillful curriculum adaptations of Ben’s junior high inclusion teacher have given Ben an exciting opportunity
to share his hopes for the future, pose questions he has about his life, reveal what he knows, and what he wants
to know more about.
Ben’s head movements, back and forth and up and down, are not random as some people might believe, but
real words that give us insight into what he hopes and dreams. The loud vocalizations are not mere attempts to
get attention, but confirmations of what he knows to be true about life as it goes on around him. The smiles, the
lips smacking, the mouth movements are not arbitrary and self-stimulating, but meaningful attempts to
communicate what he is anxious to understand about his family and his own life.
Ben knows he is twelve years old and went to Brandon Elementary School. He hopes to be a Turkey Farmer
when he grows up because animals are his passion. But he also has questions, important questions.
Ben didn’t know where he was born or why his dad doesn't live with us anymore. How could I have been so
insensitive? I never spoke much to him about his birth because it was different from what most children expect to
hear. From the time he was two days old, his life was spent in hospitals, operating rooms and doctors’ waiting
rooms almost every day for three years. He almost died, and we watched many children die around us.
Thoughtlessly I put this all in the past, thinking that is where it belonged.
I haven’t shared with Ben often enough the tough things about our life together. I was “protecting” him from the
truth. Those tough things are what have made us who we are today, and he has a right to know.
For many hours over the past few days, I have spent catching him up on his life and apologizing for my mistake.
He listens and watches my every word. He is very quiet with no smiles and no vocalizations. Sometimes I see him
quit breathing so not to miss any word or intonation attached to it. His eyes are glued to my face, watching for
every expression of happiness, sadness, concern and pride.
He has waited so long.
Ben, who is deaf and blind, uses a wheelchair, and is thought to have profound mental retardation, refuses to
live within the confines of reports and of people who do not know how to listen and watch.
The truth is setting him free and I will never hide it from him again.
I’d like to thank Tony, Ben’s inclusion teacher, for making sure my promise to Ben was not an empty one.
According to a report of the House Ear Institute dated October 28, 1997, “Benjamin Boisot was seen for Auditory
Neuropathy research purposes and clinical follow-up. Benjamin has a vision disorder, developmental delays, and
a history of respiratory problems. Parents report he can maneuver in his wheelchair and whirl-a-wheel and he is
able to follow some simple directions. He was first seen at the House Ear Institute CARE Center in March 1992.
At that time behavioral evaluation revealed no consistent response to sound, auditory brainstem response was
absent, and ototacoustic emissions were present bilaterally.”
For years, every night at bedtime, I have a conversation with Ben before turning out the lights. Even though Ben
is diagnosed as profoundly deaf, and blind, he participates in these conversations with smiles, and vocalizations.
He understands. Each night I promise that someday I will become smart enough to know more about what is
deeply on his mind, and have a better understanding of who in his life he likes and dislikes. I have promised I will
one day know what he worries about most, and what he wants to do and be.
I feel the same about Ben’s right as a human being to be included in his community with dignity as I do about
respecting his thoughts, his ability to have them, and his inherent desire to make decisions about his own life.
These qualities exist in every living soul.
I worry about advocates who do not share these views and believe the Bens of the world cannot speak for
themselves. They have an influence on the rest of society and it hinders progress toward successful community
living and the inclusion of people with disabilities. It makes a difference in my son’s life now, and it will in the
future. I don’t like it.
A while ago, I told readers I would write an article about self-determination and why it is possible for people with
the most profound disabilities to achieve – an important message that will work to eliminate the influence of the
non-believers. This is not the only article I will write on this subject, but something important happened recently
that I had to share first.
The skillful curriculum adaptations of Ben’s junior high inclusion teacher have given Ben an exciting opportunity
to share his hopes for the future, pose questions he has about his life, reveal what he knows, and what he wants
to know more about.
Ben’s head movements, back and forth and up and down, are not random as some people might believe, but
real words that give us insight into what he hopes and dreams. The loud vocalizations are not mere attempts to
get attention, but confirmations of what he knows to be true about life as it goes on around him. The smiles, the
lips smacking, the mouth movements are not arbitrary and self-stimulating, but meaningful attempts to
communicate what he is anxious to understand about his family and his own life.
Ben knows he is twelve years old and went to Brandon Elementary School. He hopes to be a Turkey Farmer
when he grows up because animals are his passion. But he also has questions, important questions.
Ben didn’t know where he was born or why his dad doesn't live with us anymore. How could I have been so
insensitive? I never spoke much to him about his birth because it was different from what most children expect to
hear. From the time he was two days old, his life was spent in hospitals, operating rooms and doctors’ waiting
rooms almost every day for three years. He almost died, and we watched many children die around us.
Thoughtlessly I put this all in the past, thinking that is where it belonged.
I haven’t shared with Ben often enough the tough things about our life together. I was “protecting” him from the
truth. Those tough things are what have made us who we are today, and he has a right to know.
For many hours over the past few days, I have spent catching him up on his life and apologizing for my mistake.
He listens and watches my every word. He is very quiet with no smiles and no vocalizations. Sometimes I see him
quit breathing so not to miss any word or intonation attached to it. His eyes are glued to my face, watching for
every expression of happiness, sadness, concern and pride.
He has waited so long.
Ben, who is deaf and blind, uses a wheelchair, and is thought to have profound mental retardation, refuses to
live within the confines of reports and of people who do not know how to listen and watch.
The truth is setting him free and I will never hide it from him again.
I’d like to thank Tony, Ben’s inclusion teacher, for making sure my promise to Ben was not an empty one.
Permission to reprint granted by TheArcLink, Incorporated at www.TheArcLink.org
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