“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 CHARGE syndrome. Show all posts
Showing posts with label CHARGE syndrome. Show all posts
Thursday, December 18, 2008
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.
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.
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!
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