“What to Expect When You’re Expecting”. “What to Expect the First Year.” The necessary manuals for all moms on a mission. When my first son was born, I read each manual thoroughly comparing the progress of my pregnancy with the milestones in the book, delighting in the textbook perfection of it. The book said morning sickness would end after the first trimester. Sure enough, mine ended as I finished my 3rd month of pregnancy. Things continued perfectly forward to a perfect birth, and I was rewarded with a perfect son.
Each month, I checked off the milestones he’d achieved at the start of each chapter noting how remarkably advanced he was. When we ran into obstacles, difficulty falling asleep, fevers, the terrible twos, the answers could be found in the manual.
I was a mom on a mission; on a mission to do my very best at every step along the way for my son. The manuals were my guides to the perfect execution of my mission. Other moms were readily available to share and compare as we all traipsed along happily raising our children.
Then came my second pregnancy. Another chance at perfection. But this time, things didn’t go by the book. Various discomforts plagued me and things didn’t feel quite right although my doctor couldn’t identify anything unusual. This birth was difficult and complicated. From the moment she arrived, it was obvious that something was definitely not quite right with our daughter.
I lay awake the first night of my baby girl’s life, alone after the rest of the family had gone home for some much needed sleep. I couldn’t sleep. Down the hall, my baby girl howled as doctors tried again and again to get an IV into her tiny newborn veins. Finally, success was achieved in a vein in her scalp.
This time, the manuals would be useless. No books held the answers to a baby who couldn’t suck, may not be able to hear, perhaps couldn’t see, and didn’t like to be held. If I thought I had a mission before, it was nothing compared to this one. The difference between traveling by car across the United States and by space shuttle to the furthest limits of the universe. There would be little to share and compare with the other moms who had become my comrades in child rearing thus far.
Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An explanation for the problems we were facing. A connection with other families worldwide facing the same mission. A connection to professionals studying the related issues. And an actual manual from the CHARGE Syndrome Foundation.
A mom on a mission with two different children going different directions requiring different sets of manuals on two simultaneous missions: one across the country with a million other drivers and one to the outer limits with a few fellow travelers.
Thursday, December 18, 2008
Monday, April 21, 2008
Traveling the Superhighways of My Mind
As I have watched my daughter grow, develop, and learn, I have noticed that her gears click in ways very different from what I have seen with the hundreds of other kids I’ve taught in my years as a teacher. She’s smart in many ways – incredibly smart. But she definitely processes and learns differently than most children. Her perspective on the world is often quite different from other kids her age.
It makes sense to me given that all of her sensory input is skewed, impaired, or challenged and that many of her life experiences are not typical for her age. She has impairments of her vision, hearing, balance, and other senses. Much of her life has been spent in therapist and doctor offices rather than playing with toys and other children. However, it seems that there is more to it. And that’s the part I have difficulty understanding.
A therapist once described it to me in a way that has stuck. Here’s the way I remember it. When I go from one idea to another, my thoughts travel down the superhighways of my brain (my neural pathways or whatever). Because I have intact sensory systems and have had basically typical experiences, my superhighways pass many of the same landmarks as other people’s thoughts. When I share my thoughts and ideas, most people recognize what I have to say and understand my thought processes.
But my daughter’s thoughts travel down gravel roads because her neural pathways are less efficient, organized, and developed. Her sensory input is different and her experiences have been different. She may get to the same ideas eventually, but it may take longer to get there and she passes different landmarks on the way. When she shares her experiences and thoughts, other people don’t always know what she’s talking about. They don’t recognize her landmarks. With lots of experience and practice, her gravel roads may be replaced by superhighways, but it’s not a given. Her gravel road experiences are building a different network of thoughts and ideas than my superhighway network.
It’s like two people going on a driving vacation from Chicago to Denver. If one takes the highways and one takes the back roads, their experiences will be vastly different although they will have some similarities and the general descriptions of their trips are the same.
In order to understand my daughter and help her learn, her teachers and I must understand the landscape of her thoughts and value the inherent intelligence required to build even gravel roads out of her limited and challenged resources. We must help her to make sense of how her understandings are different from other people’s understandings so that she can reconcile her world view with the world view of others. We must provide supportive technology, adaptive tools, and teach coping skills to provide the resources needed to pave over her gravel roads with superhighways.
In the end, intelligence may not be about the kind of roads we build or where they go. It may be more about how we use the resources we are given to build the best road system we can. As they say, it may be more about the journey than the destination (or the mode of travel).
It makes sense to me given that all of her sensory input is skewed, impaired, or challenged and that many of her life experiences are not typical for her age. She has impairments of her vision, hearing, balance, and other senses. Much of her life has been spent in therapist and doctor offices rather than playing with toys and other children. However, it seems that there is more to it. And that’s the part I have difficulty understanding.
A therapist once described it to me in a way that has stuck. Here’s the way I remember it. When I go from one idea to another, my thoughts travel down the superhighways of my brain (my neural pathways or whatever). Because I have intact sensory systems and have had basically typical experiences, my superhighways pass many of the same landmarks as other people’s thoughts. When I share my thoughts and ideas, most people recognize what I have to say and understand my thought processes.
But my daughter’s thoughts travel down gravel roads because her neural pathways are less efficient, organized, and developed. Her sensory input is different and her experiences have been different. She may get to the same ideas eventually, but it may take longer to get there and she passes different landmarks on the way. When she shares her experiences and thoughts, other people don’t always know what she’s talking about. They don’t recognize her landmarks. With lots of experience and practice, her gravel roads may be replaced by superhighways, but it’s not a given. Her gravel road experiences are building a different network of thoughts and ideas than my superhighway network.
It’s like two people going on a driving vacation from Chicago to Denver. If one takes the highways and one takes the back roads, their experiences will be vastly different although they will have some similarities and the general descriptions of their trips are the same.
In order to understand my daughter and help her learn, her teachers and I must understand the landscape of her thoughts and value the inherent intelligence required to build even gravel roads out of her limited and challenged resources. We must help her to make sense of how her understandings are different from other people’s understandings so that she can reconcile her world view with the world view of others. We must provide supportive technology, adaptive tools, and teach coping skills to provide the resources needed to pave over her gravel roads with superhighways.
In the end, intelligence may not be about the kind of roads we build or where they go. It may be more about how we use the resources we are given to build the best road system we can. As they say, it may be more about the journey than the destination (or the mode of travel).
Traveling the Superhighways of My Mind
As I have watched my daughter grow, develop, and learn, I have noticed that her gears click in ways very different from what I have seen with the hundreds of other kids I’ve taught in my years as a teacher. She’s smart in many ways – incredibly smart. But she definitely processes and learns differently than most children. Her perspective on the world is often quite different from other kids her age.
It makes sense to me given that all of her sensory input is skewed, impaired, or challenged and that many of her life experiences are not typical for her age. She has impairments of her vision, hearing, balance, and other senses. Much of her life has been spent in therapist and doctor offices rather than playing with toys and other children. However, it seems that there is more to it. And that’s the part I have difficulty understanding.
A therapist once described it to me in a way that has stuck. Here’s the way I remember it. When I go from one idea to another, my thoughts travel down the superhighways of my brain (my neural pathways or whatever). Because I have intact sensory systems and have had basically typical experiences, my superhighways pass many of the same landmarks as other people’s thoughts. When I share my thoughts and ideas, most people recognize what I have to say and understand my thought processes.
But my daughter’s thoughts travel down gravel roads because her neural pathways are less efficient, organized, and developed. Her sensory input is different and her experiences have been different. She may get to the same ideas eventually, but it may take longer to get there and she passes different landmarks on the way. When she shares her experiences and thoughts, other people don’t always know what she’s talking about. They don’t recognize her landmarks. With lots of experience and practice, her gravel roads may be replaced by superhighways, but it’s not a given. Her gravel road experiences are building a different network of thoughts and ideas than my superhighway network.
It’s like two people going on a driving vacation from Chicago to Denver. If one takes the highways and one takes the back roads, their experiences will be vastly different although they will have some similarities and the general descriptions of their trips are the same.
In order to understand my daughter and help her learn, her teachers and I must understand the landscape of her thoughts and value the inherent intelligence required to build even gravel roads out of her limited and challenged resources. We must help her to make sense of how her understandings are different from other people’s understandings so that she can reconcile her world view with the world view of others. We must provide supportive technology, adaptive tools, and teach coping skills to provide the resources needed to pave over her gravel roads with superhighways.
In the end, intelligence may not be about as much about the kind of roads we build or where they go. It may be more about how we use the resources we are given to build the best road system we can. As they say, it may be more about the journey than the destination (or the mode of travel).
It makes sense to me given that all of her sensory input is skewed, impaired, or challenged and that many of her life experiences are not typical for her age. She has impairments of her vision, hearing, balance, and other senses. Much of her life has been spent in therapist and doctor offices rather than playing with toys and other children. However, it seems that there is more to it. And that’s the part I have difficulty understanding.
A therapist once described it to me in a way that has stuck. Here’s the way I remember it. When I go from one idea to another, my thoughts travel down the superhighways of my brain (my neural pathways or whatever). Because I have intact sensory systems and have had basically typical experiences, my superhighways pass many of the same landmarks as other people’s thoughts. When I share my thoughts and ideas, most people recognize what I have to say and understand my thought processes.
But my daughter’s thoughts travel down gravel roads because her neural pathways are less efficient, organized, and developed. Her sensory input is different and her experiences have been different. She may get to the same ideas eventually, but it may take longer to get there and she passes different landmarks on the way. When she shares her experiences and thoughts, other people don’t always know what she’s talking about. They don’t recognize her landmarks. With lots of experience and practice, her gravel roads may be replaced by superhighways, but it’s not a given. Her gravel road experiences are building a different network of thoughts and ideas than my superhighway network.
It’s like two people going on a driving vacation from Chicago to Denver. If one takes the highways and one takes the back roads, their experiences will be vastly different although they will have some similarities and the general descriptions of their trips are the same.
In order to understand my daughter and help her learn, her teachers and I must understand the landscape of her thoughts and value the inherent intelligence required to build even gravel roads out of her limited and challenged resources. We must help her to make sense of how her understandings are different from other people’s understandings so that she can reconcile her world view with the world view of others. We must provide supportive technology, adaptive tools, and teach coping skills to provide the resources needed to pave over her gravel roads with superhighways.
In the end, intelligence may not be about as much about the kind of roads we build or where they go. It may be more about how we use the resources we are given to build the best road system we can. As they say, it may be more about the journey than the destination (or the mode of travel).
Wednesday, February 27, 2008
The Fishmonger
“If you have ever seen fishmongers throwing fish to each other,” said a friend who has a child with disabilities. “Picture yourself as the fish catcher. You have to deal with a bunch of fishmongers pitching the fish to you all at the same time. Would you like to catch all the fish? Sure you would. But you can't. So you have to catch the biggest, most expensive fish out of the bunch. Farm-raised catfish -- you can get that pretty much anywhere. But mahi mahi on the floor...that's just wrong!”
This is what it is to be the parent of a child with multiple disabilities or medical problems. Where do you put your attention? On what area do you focus? You can’t possibly address everything simultaneously. There are not enough hours in a day to make every doctor visit or do every therapy program available. That is, if you have anything else in your life, like a spouse, a home, other children, work, your own needs…
Another parent I know was struggling with horrendous Mommy Guilt. If you’re a mom of any child, with or without disabilities, you know Mommy Guilt. Her little girl was nearing 2 years old and had no form of communication yet. This mom knew that communication is critical for a child’s development. She was beating herself up for not learning sign language and teaching it to her hearing-impaired daughter.
But, in reality, she simply couldn’t yet. Her daughter had been hospitalized most of her short life. Her parents had faced one difficult medical decision after another; the latest being to do a procedure which severed her esophagus from her stomach to prevent aspiration of stomach contents into her lungs. This was life-threatening and life-changing stuff. For two years, the focus had been on keeping her little girl alive. When the “survival” fish is thrown at you, you let the “communication” fish flop.
Even with less critical concerns, we’ve learned to prioritize my daughter’s needs and let go of the guilt around the things we have to let slide. For example, when we were focusing on hearing and speech development, we could not manage to start the journey of investigating growth issues with a new endocrinologist. But when the hearing issues were somewhat settled, we could take on the new task.
It’s like managing a stovetop with multiple boiling pots. We move the one most near to boiling over to the front burner so we can stir and monitor it closely. On the back burners, we leave the pots that seem to be maintaining a gentle rolling boil or a simmer.
To an outsider, it can appear that we are ignoring some important needs. What an outsider often misses is the view of the boiling pots or the mahi mahi that keep our attention away from the catfish or the simmering pots. All parents face too few hours in a day, difficult prioritization decisions, and guilt. For parents of children with disabilities, the hours seem fewer, the decisions more difficult, and the guilt heavier.
This is what it is to be the parent of a child with multiple disabilities or medical problems. Where do you put your attention? On what area do you focus? You can’t possibly address everything simultaneously. There are not enough hours in a day to make every doctor visit or do every therapy program available. That is, if you have anything else in your life, like a spouse, a home, other children, work, your own needs…
Another parent I know was struggling with horrendous Mommy Guilt. If you’re a mom of any child, with or without disabilities, you know Mommy Guilt. Her little girl was nearing 2 years old and had no form of communication yet. This mom knew that communication is critical for a child’s development. She was beating herself up for not learning sign language and teaching it to her hearing-impaired daughter.
But, in reality, she simply couldn’t yet. Her daughter had been hospitalized most of her short life. Her parents had faced one difficult medical decision after another; the latest being to do a procedure which severed her esophagus from her stomach to prevent aspiration of stomach contents into her lungs. This was life-threatening and life-changing stuff. For two years, the focus had been on keeping her little girl alive. When the “survival” fish is thrown at you, you let the “communication” fish flop.
Even with less critical concerns, we’ve learned to prioritize my daughter’s needs and let go of the guilt around the things we have to let slide. For example, when we were focusing on hearing and speech development, we could not manage to start the journey of investigating growth issues with a new endocrinologist. But when the hearing issues were somewhat settled, we could take on the new task.
It’s like managing a stovetop with multiple boiling pots. We move the one most near to boiling over to the front burner so we can stir and monitor it closely. On the back burners, we leave the pots that seem to be maintaining a gentle rolling boil or a simmer.
To an outsider, it can appear that we are ignoring some important needs. What an outsider often misses is the view of the boiling pots or the mahi mahi that keep our attention away from the catfish or the simmering pots. All parents face too few hours in a day, difficult prioritization decisions, and guilt. For parents of children with disabilities, the hours seem fewer, the decisions more difficult, and the guilt heavier.
Saturday, January 12, 2008
Persistence, Patience, and Achievement
Recently, I was reminded of my first opportunity to attend a “CHARGE Syndrome 101” training to begin to understand the syndrome of my infant daughter. We did a simulation where we plugged our ears and covered our eyes to simulate the dual sensory impairments of CHARGE. Just impacting those two senses in a relatively small way – ear plugs to cause a mild loss and looking through a plastic bag to blur and distort vision – set all of us behind greatly. We had a hard time carrying on conversations, moving about the room, and engaging in any activity. Most people shut down, tried to disappear, hunched to make themselves small, and stayed in their spots avoiding conversation or contact with others.
After we’d experienced that and realized the incredible impact a small impairment can have, the presenters told us to then imagine that ALL of our senses are impaired. Imagine that you can’t hear or see. Your muscle tone is low and your balance is off or non-existent so it takes lots of energy just to stay upright in your chair and control your body in space. You can’t eat so you’ve never experienced taste and have very limited oral motor skills. You are tactile defensive so you have had limited touch experiences and the ones you have had are uncomfortable to you. For example, my daughter hates shampoo and lotions and used to fuss as if they really hurt her – not to mention the many uncomfortable and painful medical procedures she has endured from birth on.
We learn everything through our senses. If you get poor input from your senses, how do you understand your world? Even if it were you inside, as you are now, with “normal” intelligence, how would you learn? How would you show us what you know?
That experience was life-changing for me. My daughter has pretty good hearing and vision as far as CHARGE goes. She did eat eventually. She walked at age 2. But even so, all of her input is slightly “off”. Besides having a skewed or different perception of the world, she’s also had very unique life experiences for a child. She spent her first 6-9 months trying really hard not to vomit. She couldn’t be jostled and played with like most babies. She couldn’t nurse or eat from a bottle. She has spent more time with doctors and therapists than most adults ever will. She’s spent far less time playing, going to the park, Chuck E. Cheese, or the zoo than most kids because she has been busy with medical and therapy stuff.
If you think of what our kids are dealing with, you understand that they need extra time and support to grow, learn and communicate.
My daughter is doing well. I feel so lucky that all my greatest fears didn’t come true. And my heart aches for those still living with those fears. Our kids can and do achieve. It takes longer and may take unique approaches to accommodate their sensory differences/impairments, but they do achieve. We can never be certain of the potential that lies within each of them so we have to be patient and supportive as we persist in doing everything we can to help them achieve and show their potential.
After we’d experienced that and realized the incredible impact a small impairment can have, the presenters told us to then imagine that ALL of our senses are impaired. Imagine that you can’t hear or see. Your muscle tone is low and your balance is off or non-existent so it takes lots of energy just to stay upright in your chair and control your body in space. You can’t eat so you’ve never experienced taste and have very limited oral motor skills. You are tactile defensive so you have had limited touch experiences and the ones you have had are uncomfortable to you. For example, my daughter hates shampoo and lotions and used to fuss as if they really hurt her – not to mention the many uncomfortable and painful medical procedures she has endured from birth on.
We learn everything through our senses. If you get poor input from your senses, how do you understand your world? Even if it were you inside, as you are now, with “normal” intelligence, how would you learn? How would you show us what you know?
That experience was life-changing for me. My daughter has pretty good hearing and vision as far as CHARGE goes. She did eat eventually. She walked at age 2. But even so, all of her input is slightly “off”. Besides having a skewed or different perception of the world, she’s also had very unique life experiences for a child. She spent her first 6-9 months trying really hard not to vomit. She couldn’t be jostled and played with like most babies. She couldn’t nurse or eat from a bottle. She has spent more time with doctors and therapists than most adults ever will. She’s spent far less time playing, going to the park, Chuck E. Cheese, or the zoo than most kids because she has been busy with medical and therapy stuff.
If you think of what our kids are dealing with, you understand that they need extra time and support to grow, learn and communicate.
My daughter is doing well. I feel so lucky that all my greatest fears didn’t come true. And my heart aches for those still living with those fears. Our kids can and do achieve. It takes longer and may take unique approaches to accommodate their sensory differences/impairments, but they do achieve. We can never be certain of the potential that lies within each of them so we have to be patient and supportive as we persist in doing everything we can to help them achieve and show their potential.
"A Credo for Support"
“A CREDO FOR SUPPORT” begins, “Do not see my disability as the problem. Recognize that my disability is an attribute…” and goes on as a poetic request from people with disabilities to be treated as equal human beings. A Google search will lead to several text versions and videos on YouTube (http://www.youtube.com/watch?v=wunHDfZFxXw ). Originally written in 1996, it has found its way into the mainstream via the Internet. This is good news. Finally, everyone can be exposed to the issues and desires of people with disabilities. Awareness is the first step to attitude change. Attitude is the necessary precursor to a change in action.
It’s good news that disability issues have found a mainstream outlet, but the bad news comes in the response. I was sickened to read some of the posted responses to the YouTube video from people who obviously don’t get it and continue to resist efforts towards awareness and acceptance. How long will it take for real attitude change in our society? How long will it take before we truly accept all people regardless of ability? Will there ever be a time when we see past our differences right to the heart of our shared humanity?
It’s one thing to mandate acceptance, but it is quite another to actually make it happen in hearts and minds. Since 1990, the Americans with Disabilities Act has demanded that we no longer exclude people because of disability. Yet people are still excluded regularly and systematically in all areas of life. At times, the exclusion is purposeful and blatant. Other times, it is more subtle. Sometimes, it is perpetuated by well-meaning people who simply don’t realize the ways that their “help” is not helping. Awareness is necessary to increase understanding so that well-meaning people can do better and so that more people will mean well.
When will people with disabilities be able to speak for themselves without being ridiculed and diminished in their efforts by ignorant closed-minded people who can’t see that people with disabilities are people? People with gifts and joys to be celebrated. People who deserve to be respected, accepted, and valued in communities and society. What is in your heart? Do your actions match your attitude? Today, begin to think of how you accept others in your heart, in your soul, and in your actions.
It’s good news that disability issues have found a mainstream outlet, but the bad news comes in the response. I was sickened to read some of the posted responses to the YouTube video from people who obviously don’t get it and continue to resist efforts towards awareness and acceptance. How long will it take for real attitude change in our society? How long will it take before we truly accept all people regardless of ability? Will there ever be a time when we see past our differences right to the heart of our shared humanity?
It’s one thing to mandate acceptance, but it is quite another to actually make it happen in hearts and minds. Since 1990, the Americans with Disabilities Act has demanded that we no longer exclude people because of disability. Yet people are still excluded regularly and systematically in all areas of life. At times, the exclusion is purposeful and blatant. Other times, it is more subtle. Sometimes, it is perpetuated by well-meaning people who simply don’t realize the ways that their “help” is not helping. Awareness is necessary to increase understanding so that well-meaning people can do better and so that more people will mean well.
When will people with disabilities be able to speak for themselves without being ridiculed and diminished in their efforts by ignorant closed-minded people who can’t see that people with disabilities are people? People with gifts and joys to be celebrated. People who deserve to be respected, accepted, and valued in communities and society. What is in your heart? Do your actions match your attitude? Today, begin to think of how you accept others in your heart, in your soul, and in your actions.
I Love to Talk With You
Time for homework: “Read with your child daily for 20 minutes”. Most often, Aubrie likes for me to read to her. Sometimes, we take turns reading a page at a time. On this night, she declared that she would be reading to me.
What a treat! I snuggled up with a blankie on the sofa for my bedtime story. I haven’t been read to since I was a little girl. To my delight, she did a fairly smooth job of reading even the big words. This was a story with which Aubrie is extremely familiar. She has 3 different movie versions of the Tom Sawyer and Huck Finn story and has met Tom, Becky, and Mark Twain in Hannibal. Reading aloud about their adventures was a piece of cake. She knew most of the words, all of the names, and read the character’s words in quotations with great enthusiasm and emotion.
After the story, we began to chat. A random conversation about Tom and Huck, our new kittens, Broadway shows, the kids at school, bullies… anything that came to mind.
Soon, I said, “Aubrie! Uh, oh! You still have more homework and we’ve been chatting for nearly 20 minutes. We’d better go do it! But, you know, I’ve really enjoyed chatting with you. We haven’t done this in a long time.”
She agreed, “It’s awesome!”
When I again said how much I enjoy talking with her, she said, “Oh, yes, because you like my voice.”
With a chuckle and a hug, I said, “No. It’s not because I like your voice. It wouldn’t matter what your voice sounded like. It’s the words you say that I like. It wouldn’t matter if you didn’t have a voice. If you used a talking machine or sign language, I’d still love to talk with you. It’s about your words -- not your voice.”
She laughed at the absurdity of caring about a voice more than words and agreed whole-heartedly. In fact, we recalled a time when she first met a young woman with CHARGE syndrome. Some time into the visit, Aubrie asked, “Why does she talk with that voice?”
I had to explain that “that voice” was very much like Aubrie’s own voice. With hearing impairment, structural differences, and cranial nerve and oral motor weaknesses, the voices and articulation of people with CHARGE syndrome are not usually typical. At that time, Aubrie had no realization that her own voice was different to the rest of us. But she sure noticed when this young lady’s voice was not like others’.
Now she realizes the limitations of her own speech and actively works to speak as clearly as possible. She communicates with her classmates at the Illinois School for the Deaf using various combinations of voice and sign language. We both understand that communication and conversation have less to do with vocal quality or speech ability and everything to do with words, ideas, and connection.
What a treat! I snuggled up with a blankie on the sofa for my bedtime story. I haven’t been read to since I was a little girl. To my delight, she did a fairly smooth job of reading even the big words. This was a story with which Aubrie is extremely familiar. She has 3 different movie versions of the Tom Sawyer and Huck Finn story and has met Tom, Becky, and Mark Twain in Hannibal. Reading aloud about their adventures was a piece of cake. She knew most of the words, all of the names, and read the character’s words in quotations with great enthusiasm and emotion.
After the story, we began to chat. A random conversation about Tom and Huck, our new kittens, Broadway shows, the kids at school, bullies… anything that came to mind.
Soon, I said, “Aubrie! Uh, oh! You still have more homework and we’ve been chatting for nearly 20 minutes. We’d better go do it! But, you know, I’ve really enjoyed chatting with you. We haven’t done this in a long time.”
She agreed, “It’s awesome!”
When I again said how much I enjoy talking with her, she said, “Oh, yes, because you like my voice.”
With a chuckle and a hug, I said, “No. It’s not because I like your voice. It wouldn’t matter what your voice sounded like. It’s the words you say that I like. It wouldn’t matter if you didn’t have a voice. If you used a talking machine or sign language, I’d still love to talk with you. It’s about your words -- not your voice.”
She laughed at the absurdity of caring about a voice more than words and agreed whole-heartedly. In fact, we recalled a time when she first met a young woman with CHARGE syndrome. Some time into the visit, Aubrie asked, “Why does she talk with that voice?”
I had to explain that “that voice” was very much like Aubrie’s own voice. With hearing impairment, structural differences, and cranial nerve and oral motor weaknesses, the voices and articulation of people with CHARGE syndrome are not usually typical. At that time, Aubrie had no realization that her own voice was different to the rest of us. But she sure noticed when this young lady’s voice was not like others’.
Now she realizes the limitations of her own speech and actively works to speak as clearly as possible. She communicates with her classmates at the Illinois School for the Deaf using various combinations of voice and sign language. We both understand that communication and conversation have less to do with vocal quality or speech ability and everything to do with words, ideas, and connection.
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