“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.
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
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).
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.
I Choose to be Carried
I used to worry, fester, fume and ruminate over every little thing. Just ask my mom, my husband, and my friends.
Then life happened, and it just kept happening. My parents and parents-in-law both divorced – one shortly after my marriage and the other as we were having our first child. My father died way too early after a difficult struggle with brain cancer. Other friends and family died, divorced, or lost children. My daughter was born with serious medical complications and ongoing disabilities.
When I was younger, I went up and down with life. Eventually (well, recently) I learned that life could have its ups and downs, but I didn’t have to go up and down with it.
I used to worry, ponder, contemplate, and come up with every awful possibility. The theory was that if I worried and planned, I could be prepared for anything that happened. But you know what? Most often, the final outcome wasn’t anything like what I’d imagined and planned. So I had to wing it anyway. I’d spend all that time worrying and planning for nothing. I always got through somehow despite the inaccurate and useless plan derived from my worry.
Eventually, I learned to relax and live with the faith that I would get to tomorrow somehow. The “somehow” was most often something I couldn’t have planned or made happen. It was something that came about when I relaxed, let things roll, and kept my mind open to the miracles around me.
Why borrow tomorrow's worries? I can’t predict the problems of tomorrow. Why worry as if I can? Instead, I let my body and mind relax in what I know today. And I do mean what I KNOW – not what I think might happen or might be. What I KNOW are only those things that are CERTAIN AT THE MOMENT.
Whatever the certainty is, worrying over it and pondering over it won't change it, won't make it easier, and won't make it go away. I can’t worry away illness. I can’t worry away a bad relationship. I can’t worry my way to success. So settling into the certainty of right now, letting it all be, and moving through it one day at a time seems to work best. I recognize what IS, acknowledge the certainty that I am exactly where I need to be, and accept that things are just as they need to be. I keep my spirits up knowing that I will get through one way or another – even if I can’t imagine or anticipate how that will happen.
Positive thinking and good spirits carry us through. Worried minds drag us down. Our goal is to get through our days, our situations, our lives. We will get through them one way or another. Tomorrow will come. Either our good spirits will carry us through or our worries will drag us through. Hmmm... do you want to be carried or dragged??
Then life happened, and it just kept happening. My parents and parents-in-law both divorced – one shortly after my marriage and the other as we were having our first child. My father died way too early after a difficult struggle with brain cancer. Other friends and family died, divorced, or lost children. My daughter was born with serious medical complications and ongoing disabilities.
When I was younger, I went up and down with life. Eventually (well, recently) I learned that life could have its ups and downs, but I didn’t have to go up and down with it.
I used to worry, ponder, contemplate, and come up with every awful possibility. The theory was that if I worried and planned, I could be prepared for anything that happened. But you know what? Most often, the final outcome wasn’t anything like what I’d imagined and planned. So I had to wing it anyway. I’d spend all that time worrying and planning for nothing. I always got through somehow despite the inaccurate and useless plan derived from my worry.
Eventually, I learned to relax and live with the faith that I would get to tomorrow somehow. The “somehow” was most often something I couldn’t have planned or made happen. It was something that came about when I relaxed, let things roll, and kept my mind open to the miracles around me.
Why borrow tomorrow's worries? I can’t predict the problems of tomorrow. Why worry as if I can? Instead, I let my body and mind relax in what I know today. And I do mean what I KNOW – not what I think might happen or might be. What I KNOW are only those things that are CERTAIN AT THE MOMENT.
Whatever the certainty is, worrying over it and pondering over it won't change it, won't make it easier, and won't make it go away. I can’t worry away illness. I can’t worry away a bad relationship. I can’t worry my way to success. So settling into the certainty of right now, letting it all be, and moving through it one day at a time seems to work best. I recognize what IS, acknowledge the certainty that I am exactly where I need to be, and accept that things are just as they need to be. I keep my spirits up knowing that I will get through one way or another – even if I can’t imagine or anticipate how that will happen.
Positive thinking and good spirits carry us through. Worried minds drag us down. Our goal is to get through our days, our situations, our lives. We will get through them one way or another. Tomorrow will come. Either our good spirits will carry us through or our worries will drag us through. Hmmm... do you want to be carried or dragged??
You're Okay, I'm Okay
Like many families, we are preparing for our summer vacation. Before Aubrie and CHARGE syndrome, we didn’t take regular family vacations. Now the location of the International CHARGE Syndrome Conferences every 2 years determines the destination for our family vacation.
Each time we prepare for our trip, I am taken back to our first conference. Aubrie was not yet one year old and Andrew was 6 when my mom and I took the kids from Chicago to Houston. The conference always begins with an evening “getting acquainted” reception. We didn’t know what to expect as we entered the large hotel ballroom. We found it filled with CHARGE families of all ages, sizes, and ethnicities. There were parents, grandparents, siblings, and kids of all ages with CHARGE. I finally met hundreds of parents I’d been corresponding with via E-mail.
When we got back to our room, I was surprised to find myself sobbing on my mom’s shoulder. I hadn’t realized that I was feeling so inferior. When I saw all of these families who were competent, happy, successful, and thriving, I knew we would be ok too. I was overcome with tears of relief and letting go of all of those heavy emotions. We spent the weekend feeling totally at home in a far away hotel full of strangers who understood.
Two years later, as we drove up to the next conference hotel, Andrew asked, “Why are all the CHARGE families so nice? Does CHARGE happen only to nice families or do only the nice CHARGE families come to conferences?”
Our international CHARGE family has become truly that – a family. The first time I met them is permanently etched in my memory. It’s hard to explain what it means to me to have that connection with other people who absolutely understand every nuance of our quirky life. Some parents reject the idea of support groups and have difficulty moving beyond their need for privacy and out of their comfort zone to meet other families living in similar circumstances. I ache to express to them the value of making those connections. How desperate and isolating it must feel to be alone on this journey. I know Aubrie’s successes (and those of our family) are due in large part to the knowledge, experience, and support shared through our CHARGE family.
I look forward to the upcoming reunion with them. Now – how many suitcases, how much food, and how many books and games can we cram in the car with 4 people?? California, here we come!
Each time we prepare for our trip, I am taken back to our first conference. Aubrie was not yet one year old and Andrew was 6 when my mom and I took the kids from Chicago to Houston. The conference always begins with an evening “getting acquainted” reception. We didn’t know what to expect as we entered the large hotel ballroom. We found it filled with CHARGE families of all ages, sizes, and ethnicities. There were parents, grandparents, siblings, and kids of all ages with CHARGE. I finally met hundreds of parents I’d been corresponding with via E-mail.
When we got back to our room, I was surprised to find myself sobbing on my mom’s shoulder. I hadn’t realized that I was feeling so inferior. When I saw all of these families who were competent, happy, successful, and thriving, I knew we would be ok too. I was overcome with tears of relief and letting go of all of those heavy emotions. We spent the weekend feeling totally at home in a far away hotel full of strangers who understood.
Two years later, as we drove up to the next conference hotel, Andrew asked, “Why are all the CHARGE families so nice? Does CHARGE happen only to nice families or do only the nice CHARGE families come to conferences?”
Our international CHARGE family has become truly that – a family. The first time I met them is permanently etched in my memory. It’s hard to explain what it means to me to have that connection with other people who absolutely understand every nuance of our quirky life. Some parents reject the idea of support groups and have difficulty moving beyond their need for privacy and out of their comfort zone to meet other families living in similar circumstances. I ache to express to them the value of making those connections. How desperate and isolating it must feel to be alone on this journey. I know Aubrie’s successes (and those of our family) are due in large part to the knowledge, experience, and support shared through our CHARGE family.
I look forward to the upcoming reunion with them. Now – how many suitcases, how much food, and how many books and games can we cram in the car with 4 people?? California, here we come!
Hoping for Trust and Gratitude
To outsiders, the lives of children with disabilities can look very bleak for the children and their families. People wonder how we can cope with such dreary circumstances. Frankly, there are days when we wonder how we will cope.
Recently, a friend came upon such a day. She’s known since birth that her nearly 2-year-old daughter is profoundly deaf. But the other day, final MRI results revealed that she has no auditory nerves -- crushing any hopes of a cochlear implant or other kind of hearing assistance. My friend felt sideswiped by grief as she suddenly realized how tightly she’d been holding on to the hope of some intervention to bring her daughter sound.
Thus began a profound conversation about hope and grief, expectations and trust. I used to think that hope would get us through tough times. But now I think hope may be a dangerous place to hang your hat.
Consider my friend’s daughter. Her hearing is the same as it’s always been. The only thing that changed is her parents’ awareness of what that is. Each time we get bad news about our children’s condition, nothing has really changed – just our knowledge of it. Our knowing or not knowing usually will not stop what is to be. The grief is not about a new condition or situation; it is about our lost hopes.
When hopes are really expectations of how things should and will be, we are setting ourselves up for grief when those expectations are not met. We have no control over how things will be. The future will unfold as it is meant to – regardless of our “shoulds”, expectations, and hopes.
So what do we do with our hope? We use hope as a compass to direct our path and give substance to our vision. But we temper precarious hope with gratitude and trust. Trust that whatever comes will be just as it must be. Trust that we will endure any trial that comes our way. Trust that for everything that appears bad, there is goodness on the underside. Gratitude for that good -- for the new understandings and insights that can be found under emivery obstacle and tragedy in our path. Gratitude for the wonderful gift that is our child.
When we find ourselves weary and stooped under the weight of our worries, when our instinct is to hold tightly to hope with eyes clenched shut and a white-knuckled grip, our despair can be lifted with a combination of trust and gratitude. Open your eyes, soften your grip, trust, allow, and be thankful for what is.
Recently, a friend came upon such a day. She’s known since birth that her nearly 2-year-old daughter is profoundly deaf. But the other day, final MRI results revealed that she has no auditory nerves -- crushing any hopes of a cochlear implant or other kind of hearing assistance. My friend felt sideswiped by grief as she suddenly realized how tightly she’d been holding on to the hope of some intervention to bring her daughter sound.
Thus began a profound conversation about hope and grief, expectations and trust. I used to think that hope would get us through tough times. But now I think hope may be a dangerous place to hang your hat.
Consider my friend’s daughter. Her hearing is the same as it’s always been. The only thing that changed is her parents’ awareness of what that is. Each time we get bad news about our children’s condition, nothing has really changed – just our knowledge of it. Our knowing or not knowing usually will not stop what is to be. The grief is not about a new condition or situation; it is about our lost hopes.
When hopes are really expectations of how things should and will be, we are setting ourselves up for grief when those expectations are not met. We have no control over how things will be. The future will unfold as it is meant to – regardless of our “shoulds”, expectations, and hopes.
So what do we do with our hope? We use hope as a compass to direct our path and give substance to our vision. But we temper precarious hope with gratitude and trust. Trust that whatever comes will be just as it must be. Trust that we will endure any trial that comes our way. Trust that for everything that appears bad, there is goodness on the underside. Gratitude for that good -- for the new understandings and insights that can be found under emivery obstacle and tragedy in our path. Gratitude for the wonderful gift that is our child.
When we find ourselves weary and stooped under the weight of our worries, when our instinct is to hold tightly to hope with eyes clenched shut and a white-knuckled grip, our despair can be lifted with a combination of trust and gratitude. Open your eyes, soften your grip, trust, allow, and be thankful for what is.
The "R" Word
In the midst of political correctness, the spotlight has been focused on the N word and its denigration of African-Americans. For people with disabilities, the R word is just as denigrating. The R word, “retard”, is used to express utter contempt. What began as a benign medical diagnosis has come to be a disparaging and offensive word used to describe someone who is “stupid, obtuse, or ineffective in some way” (according to www.dictionary.com).
Soeren Palumbo, a Palatine high school student, made local news with his speech about the R word. His speech has gained accolades among disability advocates and has been widespread on the Internet. There’s not enough room to reprint his speech here so I urge you to find it online and read it. It’s powerful stuff. Google “Soeren Palumbo” or try this link: http://www.ncpad.org/yourwrites/fact_sheet.php?sheet=514
Soeren eloquently speaks for his younger sister – one of the many people with disabilities hurt by the R word. These are people who often literally cannot speak for themselves, who have been discriminated against, uneducated, isolated, ignored, devalued and dismissed. Historically, people with disabilities have been deemed less than human. They have been kept hidden in their family homes or sent off to an institution where they could be warehoused away from the rest of society. In some cultures, they have been taken to the hills and left to die. Today, people with disabilities still struggle to find their place in their communities.
The irony is that every person knows someone with a disability. Disability is a natural part of life affecting approximately 5% of Americans. Statistically, we all know and love someone with a disability. Disability crosses all boundaries: ethnicity, economics, race, gender, and age. Yet we do not protect our loved ones from hatred and victimization. Because we don’t even think about it, we may inadvertently add to the problem.
Each time you use the R word, you dig deeper the chasm of segregation, dehumanization, and discrimination of people with disabilities. Having a cognitive disability is not a bad thing. And it’s not at all the same as being ignorant. Ignorance leads to discrimination and hatred. Ignorance is when people make assumptions about others based on their looks, their ethnicity, their gender, or their labels. Ignorance is devaluing a whole group of people by using an offensive word without thought to the consequences. Using the R word is ignorant.
Soeren Palumbo, a Palatine high school student, made local news with his speech about the R word. His speech has gained accolades among disability advocates and has been widespread on the Internet. There’s not enough room to reprint his speech here so I urge you to find it online and read it. It’s powerful stuff. Google “Soeren Palumbo” or try this link: http://www.ncpad.org/yourwrites/fact_sheet.php?sheet=514
Soeren eloquently speaks for his younger sister – one of the many people with disabilities hurt by the R word. These are people who often literally cannot speak for themselves, who have been discriminated against, uneducated, isolated, ignored, devalued and dismissed. Historically, people with disabilities have been deemed less than human. They have been kept hidden in their family homes or sent off to an institution where they could be warehoused away from the rest of society. In some cultures, they have been taken to the hills and left to die. Today, people with disabilities still struggle to find their place in their communities.
The irony is that every person knows someone with a disability. Disability is a natural part of life affecting approximately 5% of Americans. Statistically, we all know and love someone with a disability. Disability crosses all boundaries: ethnicity, economics, race, gender, and age. Yet we do not protect our loved ones from hatred and victimization. Because we don’t even think about it, we may inadvertently add to the problem.
Each time you use the R word, you dig deeper the chasm of segregation, dehumanization, and discrimination of people with disabilities. Having a cognitive disability is not a bad thing. And it’s not at all the same as being ignorant. Ignorance leads to discrimination and hatred. Ignorance is when people make assumptions about others based on their looks, their ethnicity, their gender, or their labels. Ignorance is devaluing a whole group of people by using an offensive word without thought to the consequences. Using the R word is ignorant.
Are You Talking to Me?
“Mom!” “Mom?” “Ma!” My preschooler hollered from the backseat the entire four-hour drive to Grandma’s. When I answered, “What, Honey?” it turned out he had nothing to say. I remember thinking, “Who taught this child to talk? And who told him my name??”
As a kid, I remember my mom’s exasperated claims that she would change her name and run away if we kept badgering her. Suddenly, I understood.
Fast forward five years to another trip to Grandma’s. This time, we have two children. My son is now 9 or 10; his sister is maybe 3 or 4. She complains, “Andwooz bodderin me!” My husband and I exchange a silent cheer for the accomplishment of this child who can argue with her brother. When she was born, we didn’t know if she would see, hear, walk, or speak. We certainly didn’t allow ourselves to wish for sibling rivalry in all its splendor. Now, she too talks so much that we sometimes wonder why we worried and when she’ll give us a moment of silence.
For both our kids, we rejoiced in their babbles, rhymes, and songs on the way to real communication. With our son, it was the wonderment of watching our first child’s personality and speech unfold. For our daughter, it was extra wonderment as some of our fears were put to rest.
We so longed for their first amazing words. Those first words eventually led to the annoying, pestering monologues of childish needs, imaginings, and demands. At times, our wonderment and joy became irritation and exasperation. How quickly a gift can become a burden in our minds when we are tired, stressed, or busy.
Fast forward again five years. Now our teen, at age 15, doesn’t want to talk to us. Again we long for words. Any words. Tell us your feelings, your imaginings, your desires. We linger on his every syllable just as we did on his every infant babble. Suddenly, the burden again becomes the greatest gift on our wish list.
As a kid, I remember my mom’s exasperated claims that she would change her name and run away if we kept badgering her. Suddenly, I understood.
Fast forward five years to another trip to Grandma’s. This time, we have two children. My son is now 9 or 10; his sister is maybe 3 or 4. She complains, “Andwooz bodderin me!” My husband and I exchange a silent cheer for the accomplishment of this child who can argue with her brother. When she was born, we didn’t know if she would see, hear, walk, or speak. We certainly didn’t allow ourselves to wish for sibling rivalry in all its splendor. Now, she too talks so much that we sometimes wonder why we worried and when she’ll give us a moment of silence.
For both our kids, we rejoiced in their babbles, rhymes, and songs on the way to real communication. With our son, it was the wonderment of watching our first child’s personality and speech unfold. For our daughter, it was extra wonderment as some of our fears were put to rest.
We so longed for their first amazing words. Those first words eventually led to the annoying, pestering monologues of childish needs, imaginings, and demands. At times, our wonderment and joy became irritation and exasperation. How quickly a gift can become a burden in our minds when we are tired, stressed, or busy.
Fast forward again five years. Now our teen, at age 15, doesn’t want to talk to us. Again we long for words. Any words. Tell us your feelings, your imaginings, your desires. We linger on his every syllable just as we did on his every infant babble. Suddenly, the burden again becomes the greatest gift on our wish list.
Walking Through the Fog
Imagine an early morning thick with fog. Walking into a dense forest, you can see only a few inches in front of you as you step cautiously forward. Will you trip over a log? Will you fall into a creek or pond? Is a grizzly bear waiting to attack? Is the path smooth and straight, or winding and bumpy with rocks and tree roots? Is there a path at all? Perhaps it ends at a sudden, steep, rocky cliff. Perhaps it leads into deep brush or a thicket full of thorns and thistles.
You want to turn back. But you must keep walking. Don’t look back. Don’t stop and pause. Keep walking. And take your precious child with you. Keep walking. Don’t worry about the perils ahead. Keep that child right by your side. Better yet, push the child out first. Let your child lead.
Uncomfortable? Frightening?
This is the nightmare that many parents live every day as they lead their children through a life with medical challenges and uncertainty. We never know what the next day will bring. Each doctor appointment is another step into the fog. Will this be a routine check-up? Or will there be a new challenge to face?
My daughter’s first years were spent driving over four hours round trip to the children’s hospital at least weekly. Each visit, each test, each procedure, each therapy appointment uncovered something new that needed attention. The long drive was always filled with dread. What horrible news might I learn today? Will we leave here with a sigh of relief or with a full agenda of further tests and surgeries?
When we thought we’d finally uncovered and resolved every medical issue, when we thought the fog had lifted, when we had packed our picnic basket for the flower-filled meadow we were certain lie just ahead, we learned that she would need two complicated surgeries in one year. Down came the fog again. This time, it hid a brick wall that we walked right into full force. Picnic basket crushed. Food splattered everywhere. Leave it behind and keep walking.
I tell my daughter that it is my job to worry. I can worry enough for the whole family so she should lay her burdens on me and then go out and play. But I know she is right there beside me on the foggy path. I cannot release her from the journey. All I can do is hope to stay one step ahead to guard her from the uncertainties and dangers. And try not to think about the day when she will have to walk alone.
You want to turn back. But you must keep walking. Don’t look back. Don’t stop and pause. Keep walking. And take your precious child with you. Keep walking. Don’t worry about the perils ahead. Keep that child right by your side. Better yet, push the child out first. Let your child lead.
Uncomfortable? Frightening?
This is the nightmare that many parents live every day as they lead their children through a life with medical challenges and uncertainty. We never know what the next day will bring. Each doctor appointment is another step into the fog. Will this be a routine check-up? Or will there be a new challenge to face?
My daughter’s first years were spent driving over four hours round trip to the children’s hospital at least weekly. Each visit, each test, each procedure, each therapy appointment uncovered something new that needed attention. The long drive was always filled with dread. What horrible news might I learn today? Will we leave here with a sigh of relief or with a full agenda of further tests and surgeries?
When we thought we’d finally uncovered and resolved every medical issue, when we thought the fog had lifted, when we had packed our picnic basket for the flower-filled meadow we were certain lie just ahead, we learned that she would need two complicated surgeries in one year. Down came the fog again. This time, it hid a brick wall that we walked right into full force. Picnic basket crushed. Food splattered everywhere. Leave it behind and keep walking.
I tell my daughter that it is my job to worry. I can worry enough for the whole family so she should lay her burdens on me and then go out and play. But I know she is right there beside me on the foggy path. I cannot release her from the journey. All I can do is hope to stay one step ahead to guard her from the uncertainties and dangers. And try not to think about the day when she will have to walk alone.
What Makes Us Whole?
What makes us whole? What gives us our worth?
These are some of life’s questions that have been answered since the birth of my daughter nine years ago. She was born with serious medical complications due to a genetic disorder. The first year of her life was spent keeping her alive, keeping her nourished, figuring out how to meet her many needs, and juggling impossible numbers of doctor and therapy appointments. There wasn’t much time to enjoy her babyhood. In the beginning, she was more a bundle of medical problems than a bundle of joy.
How does a mother bond with a bundle of medical problems?
Our daughter had an identity in our family long before her birth. We named her. We painted her room pink. We planned for her arrival. We shared her ultrasound photos with family and friends.
At the time, our son was six-years-old and the joy of our lives. If he had an accident or injury bringing about the same level of need and stripping him of his abilities, we would love him no less. In fact, we would fight to nurture the beauty and growth of his soul in spite of whatever limitations he may have.
If any one of us were disabled by illness or injury, we would still be the same person that we are today. Our souls would remain in tact. Our dignity and rights would remain the same. Our value would not change. Our inner selves, our souls, remain constant regardless of how our life circumstances change over time.
So it is with my daughter. Her soul is whole and beautiful. She is the same person we anticipated and welcomed into our family. The body carrying that soul is not as we expected. But she is the same. She is a whole, valuable human being with all of the rights and dignity as everyone else.
And so it is with all people – disabled or not, black or white, young or old, male or female, Catholic or Jewish, rich or poor. We are all valuable, worthwhile human beings just by virtue of being. Inside each of us is a soul holding all that is right with the world. When you see someone who is different, in any way, remember that their soul is the same as your soul. Their humanity is your humanity. We share one world and one human experience regardless of the specifics of our bodies and our circumstances. We are whole and valuable because we are.
These are some of life’s questions that have been answered since the birth of my daughter nine years ago. She was born with serious medical complications due to a genetic disorder. The first year of her life was spent keeping her alive, keeping her nourished, figuring out how to meet her many needs, and juggling impossible numbers of doctor and therapy appointments. There wasn’t much time to enjoy her babyhood. In the beginning, she was more a bundle of medical problems than a bundle of joy.
How does a mother bond with a bundle of medical problems?
Our daughter had an identity in our family long before her birth. We named her. We painted her room pink. We planned for her arrival. We shared her ultrasound photos with family and friends.
At the time, our son was six-years-old and the joy of our lives. If he had an accident or injury bringing about the same level of need and stripping him of his abilities, we would love him no less. In fact, we would fight to nurture the beauty and growth of his soul in spite of whatever limitations he may have.
If any one of us were disabled by illness or injury, we would still be the same person that we are today. Our souls would remain in tact. Our dignity and rights would remain the same. Our value would not change. Our inner selves, our souls, remain constant regardless of how our life circumstances change over time.
So it is with my daughter. Her soul is whole and beautiful. She is the same person we anticipated and welcomed into our family. The body carrying that soul is not as we expected. But she is the same. She is a whole, valuable human being with all of the rights and dignity as everyone else.
And so it is with all people – disabled or not, black or white, young or old, male or female, Catholic or Jewish, rich or poor. We are all valuable, worthwhile human beings just by virtue of being. Inside each of us is a soul holding all that is right with the world. When you see someone who is different, in any way, remember that their soul is the same as your soul. Their humanity is your humanity. We share one world and one human experience regardless of the specifics of our bodies and our circumstances. We are whole and valuable because we are.
What is Disability?
Disability. What does it mean? What does it really mean? And why do you care?
Disability can be so many things. It can be a physical limitation, a sensory issue, or a cognitive impairment. Limitation… issue…impairment… Sounds like a big problem, doesn’t it? When we see or hear about a person with a disability, we ask, “What’s wrong with them?” Wrong.
Hmmm… What’s wrong with me? What’s wrong with you? We all have something wrong. We all have faults, limitations, issues… We’re all different and unique. My husband can tell you the full list of my faults, limitations, issues… But because they all fall within the realm of “normal” and because I can function fine (by who’s standards?), they are not disabilities.
A disability is a difference that interferes with “activities of daily living” (to use the jargon of the disability field). A disability is something that interferes with my being able to care for myself, perform my job, learn at school… you get the idea. It can be a small thing with big ramifications, a big thing with small ramifications, a complex set of lots of things – disability takes many shapes.
Most people think disability happens to someone else, but disability can happen to anyone at any time. Disability is a natural part of the human condition. Statistically, one in 5 Americans has a disability. Disability crosses gender, ethnic, cultural, and socio-economic barriers. In fact, disability is the only minority group that we don’t necessarily come to by birth or choice. Any one of us can join the “Disability Club” at a moment’s notice without our consent and without warning. We can join by age, illness, or accident. And so can our loved ones.
Because we are human, we are humane. Because we are humane, we care about all people. Because we care about all people, we care about people who are like us and people who are different. We care about the strong and the weak, the quiet and the vocal. We care about people with disabilities because, as Americans, we believe that all people are valued citizens with rights. We believe that people with disabilities have the same rights as people without disabilities. We believe that – if we had an accident or illness that rendered us disabled right now – we would have the same rights and value that we had the moment before the accident or illness happened. So do you care about disability rights? Sure you do. Because you’re human.
Disability can be so many things. It can be a physical limitation, a sensory issue, or a cognitive impairment. Limitation… issue…impairment… Sounds like a big problem, doesn’t it? When we see or hear about a person with a disability, we ask, “What’s wrong with them?” Wrong.
Hmmm… What’s wrong with me? What’s wrong with you? We all have something wrong. We all have faults, limitations, issues… We’re all different and unique. My husband can tell you the full list of my faults, limitations, issues… But because they all fall within the realm of “normal” and because I can function fine (by who’s standards?), they are not disabilities.
A disability is a difference that interferes with “activities of daily living” (to use the jargon of the disability field). A disability is something that interferes with my being able to care for myself, perform my job, learn at school… you get the idea. It can be a small thing with big ramifications, a big thing with small ramifications, a complex set of lots of things – disability takes many shapes.
Most people think disability happens to someone else, but disability can happen to anyone at any time. Disability is a natural part of the human condition. Statistically, one in 5 Americans has a disability. Disability crosses gender, ethnic, cultural, and socio-economic barriers. In fact, disability is the only minority group that we don’t necessarily come to by birth or choice. Any one of us can join the “Disability Club” at a moment’s notice without our consent and without warning. We can join by age, illness, or accident. And so can our loved ones.
Because we are human, we are humane. Because we are humane, we care about all people. Because we care about all people, we care about people who are like us and people who are different. We care about the strong and the weak, the quiet and the vocal. We care about people with disabilities because, as Americans, we believe that all people are valued citizens with rights. We believe that people with disabilities have the same rights as people without disabilities. We believe that – if we had an accident or illness that rendered us disabled right now – we would have the same rights and value that we had the moment before the accident or illness happened. So do you care about disability rights? Sure you do. Because you’re human.
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