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3.22.2011
3.21.2011
S is for seizure
So....
the seizures are still with us. It is a month of them now - every single day. Not like Ivey. Uncontrolled intense seizures - yes, but not normally this frequent. Too frequent. Meds have been increased and antibiotics galore. Time to circle the wagons. This past weekend and our little "super moon" didn't help any.
the seizures are still with us. It is a month of them now - every single day. Not like Ivey. Uncontrolled intense seizures - yes, but not normally this frequent. Too frequent. Meds have been increased and antibiotics galore. Time to circle the wagons. This past weekend and our little "super moon" didn't help any.
3.17.2011
Rethinking the "F" Word
I am a little on the competitive side most of the time. Can't help it. It is just part of who I am. It can be a great asset or I can be my own worst enemy other times. Most often a good dose of competition pays off. When I look at Ivey - I see she might have gotten a little bit of that competitiveness - also when I look at her, especially on the hard days, I see she is a race to be won.
The downside to being competitive is failure. I hate to lose. Personally- there are alot of times when I look at Ivey and hear the defying words from Apollo 13 whispering in my ear, "Failure is not an option." I feel a battle raging.
Anyway - I read this article about a year ago and held onto it. I ran across it again the other day. Originally when I read the article, I didn't think about Ivey or her battles to be won and lost. Rather, I thought about our boys. They were playing sports - wanting to win. I thought alot about me sitting in the bleachers and how I should let up on my own competitiveness. Maybe a good dose of loosing might actually be the best thing over the long run-for them. Maybe not so much -Push, push, push...win, win, win. ...best, best, best...
This time after I read it I thought about life - obstacles- and how many times the boys will fail or fall short of what they want. How will they handle themselves, will they pick themselves up, dust off and go again with new knowledge, or will they see only barriers and stop? Knox's understanding, or not understanding, of his sister made all the difference this time. He is listening to those around him more and more, questioning everyone's views and opinions.
This is where Ivey comes in. I can't count the number of times in the last four years that we have been told the words "I am so sorry" - obviously - for having Ivey and her "issues". Some see her and they see failure. Particularly now, those who are unfamiliar with her, people in malls, the old woman in the grocery store, they see what was supposed to be a bundle of joy as a something that didn't quite end in the typical expected plans. Some might say Life failed us or see it as our failure, her failure - God's failure. She wasn't planned, not the course we thought we wanted or dreamed about - honestly we didn't know she was an option, and so for those who don't know her or us, she must be some symbol of failure.
Recently Knox asked me why someone apologized to me when they met Ivey.
That pretty much sums this up.
What do you say to him? People don't apologize when they meet him... How do I explain to him that he will have many obstacles placed in his life, some harder than others, some more permanent than others, and he will lose many times, he will fail. But in the end - he will be successful when he faces his challenges head-on with work and sweat - Or, how do you explain something so complex? How do I put into words that this life he is leading with his sister is a great success story and that our success may be seen by someone else as failure? But no matter what, we must stay our course despite how others view us and our life circumstances. This article resonated something familiar about our boys life - and how we will teach them to handle difficulty, dissappointment and failure. Most importantly - failure.
Hopefully we are on the right track and "rethinking the F word".
Rethinking the “F” Word
By Dane Peters
The other day, I selected a book from my bookshelf because I wanted to remind myself of the last time I read a selection from it to our elementary and middle school children. The book, The Grass Is Always Greener Over the Septic Tank (1976), is a collection of funny, yet meaningful stories about families, raising children, and life’s many challenges, written in a way only Erma Bombeck could write. The story I reread was “Ralph Corlis, The Coach Who Played to Lose.” It’s about a father who, after the death of his wife, moved to the suburbs to carve out a new life for his two sons and himself. The most meaningful part for me is when two Little League coaches confront Ralph demanding to know why he coaches his team to lose games. Ralph replies, “It’s hard to explain, but kids go all through their lives learning how to win, but no one ever teaches them how to lose. Just think about it. Most kids don’t know how to handle defeat. They fall apart. It’s important to know how to lose because you do a lot of it when you grow up. You have to have perspective – how to know what is important to lose and what isn’t important.”
My years of experience as a father, educator, and individual have taught me that, in fact, Ralph is right; failure motivates and forces us to get things right. And yet, we work so hard to protect our children from it. What originally drew my attention to the Bombeck story was my last letter to the parents at my school, which focused on the ‘f’ word. In it, I wrote, “One word that would most assuredly not appear on any list (that describes children) and is one of the most helpful character builders for children and adults is “failure”. Unfortunately, we shy away from using that word with children and each other, and yet, it is a word we have to live with our whole lives. For some, failure serves as a roadblock; for others, it is an obstacle to navigate around to a higher ground; and still for others, it provides inspiration to get it right.”
Imagine how life would be without trial-and-error. Sir Ken Robinson – an internationally recognized leader in the development of creativity, innovation, and human resources, and professor of education – expressed this concept and belief best during his lecture at the 2006 Technology, Entertainment, Design (TED) Conference when he said, “If you’re not prepared to be wrong, you’ll never come up with anything original.”
Robinson cites Dr. Maria Montessori in his lecture’s bibliography. Coincidentally, in Montessori Today , author Paula Polk Lillard states, it is psychological security, engendered in part by a properly structured environment, which gives children the impulse to try harder to face the unknown, including the unpleasant facts of life. The goal is to help children use their human energies to deal with the failures and disappointments of their lives and not be destroyed by them.”
Last fall, Howard Gardner spoke to the faculty and staff at my school about his theory of multiple intelligences. Rather than focusing on linguistic and quantitative reasoning – the two forms of intelligences most often valued in schools – Gardner posits that human intelligence also includes artistic, interpersonal, intrapersonal, and kinesthetic intelligences. By placing emphasis on this broad range of intelligences and abilities, he said, we can broaden the scope of how we assess ourselves and our children.
And, by opening up more avenues for approaching and solving problems, we can also help to diffuse our fear of failure. By trying and failing, or trying and succeeding, in the various forms of intelligence, we come to know our strengths and weaknesses and develp a strong, resilient sense of self. In his closing to those assembled, Gardner shared this quote from Ralph Waldo Emerson: “Character is more important than intellect.”
In the 2008 winter issue of this magazine, Carol Dweck’s article, “Brainology,” highlighted the value of trial –and-error in child development. Dweck researched the differences in children who have a fixed mindset about intelligence versus those who have a growth mindset. Children with a fixed mindset believe “that intelligence is fixed, that each person has a certain amount and that’s that” while children with a growth mindset “believe that intelligence is a potential that can be realized through learning. As a result, confronting challenges, profiting from mistakes, and persevering in the face of setbacks become ways of getting smarter.” Dweck cleverly tells us that even “Einstein wasn’t Einstein until he put in years of focused hard work.”
The ways in which our children approach challenges and overcome failure determine how successful they will become later on in life. It seems that Ralph Corlis had the right idea. We can’t really win in life if we don’t also learn to lose.
The downside to being competitive is failure. I hate to lose. Personally- there are alot of times when I look at Ivey and hear the defying words from Apollo 13 whispering in my ear, "Failure is not an option." I feel a battle raging.
Anyway - I read this article about a year ago and held onto it. I ran across it again the other day. Originally when I read the article, I didn't think about Ivey or her battles to be won and lost. Rather, I thought about our boys. They were playing sports - wanting to win. I thought alot about me sitting in the bleachers and how I should let up on my own competitiveness. Maybe a good dose of loosing might actually be the best thing over the long run-for them. Maybe not so much -Push, push, push...win, win, win. ...best, best, best...
This time after I read it I thought about life - obstacles- and how many times the boys will fail or fall short of what they want. How will they handle themselves, will they pick themselves up, dust off and go again with new knowledge, or will they see only barriers and stop? Knox's understanding, or not understanding, of his sister made all the difference this time. He is listening to those around him more and more, questioning everyone's views and opinions.
This is where Ivey comes in. I can't count the number of times in the last four years that we have been told the words "I am so sorry" - obviously - for having Ivey and her "issues". Some see her and they see failure. Particularly now, those who are unfamiliar with her, people in malls, the old woman in the grocery store, they see what was supposed to be a bundle of joy as a something that didn't quite end in the typical expected plans. Some might say Life failed us or see it as our failure, her failure - God's failure. She wasn't planned, not the course we thought we wanted or dreamed about - honestly we didn't know she was an option, and so for those who don't know her or us, she must be some symbol of failure.
Recently Knox asked me why someone apologized to me when they met Ivey.
That pretty much sums this up.
What do you say to him? People don't apologize when they meet him... How do I explain to him that he will have many obstacles placed in his life, some harder than others, some more permanent than others, and he will lose many times, he will fail. But in the end - he will be successful when he faces his challenges head-on with work and sweat - Or, how do you explain something so complex? How do I put into words that this life he is leading with his sister is a great success story and that our success may be seen by someone else as failure? But no matter what, we must stay our course despite how others view us and our life circumstances. This article resonated something familiar about our boys life - and how we will teach them to handle difficulty, dissappointment and failure. Most importantly - failure.
Hopefully we are on the right track and "rethinking the F word".
Rethinking the “F” Word
By Dane Peters
The other day, I selected a book from my bookshelf because I wanted to remind myself of the last time I read a selection from it to our elementary and middle school children. The book, The Grass Is Always Greener Over the Septic Tank (1976), is a collection of funny, yet meaningful stories about families, raising children, and life’s many challenges, written in a way only Erma Bombeck could write. The story I reread was “Ralph Corlis, The Coach Who Played to Lose.” It’s about a father who, after the death of his wife, moved to the suburbs to carve out a new life for his two sons and himself. The most meaningful part for me is when two Little League coaches confront Ralph demanding to know why he coaches his team to lose games. Ralph replies, “It’s hard to explain, but kids go all through their lives learning how to win, but no one ever teaches them how to lose. Just think about it. Most kids don’t know how to handle defeat. They fall apart. It’s important to know how to lose because you do a lot of it when you grow up. You have to have perspective – how to know what is important to lose and what isn’t important.”
My years of experience as a father, educator, and individual have taught me that, in fact, Ralph is right; failure motivates and forces us to get things right. And yet, we work so hard to protect our children from it. What originally drew my attention to the Bombeck story was my last letter to the parents at my school, which focused on the ‘f’ word. In it, I wrote, “One word that would most assuredly not appear on any list (that describes children) and is one of the most helpful character builders for children and adults is “failure”. Unfortunately, we shy away from using that word with children and each other, and yet, it is a word we have to live with our whole lives. For some, failure serves as a roadblock; for others, it is an obstacle to navigate around to a higher ground; and still for others, it provides inspiration to get it right.”
Imagine how life would be without trial-and-error. Sir Ken Robinson – an internationally recognized leader in the development of creativity, innovation, and human resources, and professor of education – expressed this concept and belief best during his lecture at the 2006 Technology, Entertainment, Design (TED) Conference when he said, “If you’re not prepared to be wrong, you’ll never come up with anything original.”
Robinson cites Dr. Maria Montessori in his lecture’s bibliography. Coincidentally, in Montessori Today , author Paula Polk Lillard states, it is psychological security, engendered in part by a properly structured environment, which gives children the impulse to try harder to face the unknown, including the unpleasant facts of life. The goal is to help children use their human energies to deal with the failures and disappointments of their lives and not be destroyed by them.”
Last fall, Howard Gardner spoke to the faculty and staff at my school about his theory of multiple intelligences. Rather than focusing on linguistic and quantitative reasoning – the two forms of intelligences most often valued in schools – Gardner posits that human intelligence also includes artistic, interpersonal, intrapersonal, and kinesthetic intelligences. By placing emphasis on this broad range of intelligences and abilities, he said, we can broaden the scope of how we assess ourselves and our children.
And, by opening up more avenues for approaching and solving problems, we can also help to diffuse our fear of failure. By trying and failing, or trying and succeeding, in the various forms of intelligence, we come to know our strengths and weaknesses and develp a strong, resilient sense of self. In his closing to those assembled, Gardner shared this quote from Ralph Waldo Emerson: “Character is more important than intellect.”
In the 2008 winter issue of this magazine, Carol Dweck’s article, “Brainology,” highlighted the value of trial –and-error in child development. Dweck researched the differences in children who have a fixed mindset about intelligence versus those who have a growth mindset. Children with a fixed mindset believe “that intelligence is fixed, that each person has a certain amount and that’s that” while children with a growth mindset “believe that intelligence is a potential that can be realized through learning. As a result, confronting challenges, profiting from mistakes, and persevering in the face of setbacks become ways of getting smarter.” Dweck cleverly tells us that even “Einstein wasn’t Einstein until he put in years of focused hard work.”
The ways in which our children approach challenges and overcome failure determine how successful they will become later on in life. It seems that Ralph Corlis had the right idea. We can’t really win in life if we don’t also learn to lose.
3.10.2011
Knoxster
Today is my oldest son’s birthday. Wow. Where does the time go? I think he is going to have an awesome day. I have to admit, another one of those things I would love to take credit for but have no bearings on, that he is one of the neatest people I know. Smart. Very first born. Very type A. Very rational. Very responsible. A compartmentalizer. Extremely focused. Unconditional loving heart - for everyone. Bound to accomplish what he sets his mind to. His daddy is a lot like that. But, he also has a level of compassion and realism that is sometimes perplexing to see in such a little body.
I have heard people say that having a sister like Ivey will make him more compassionate. That is possibly true I suppose. Just watching him with her would suggest that, but honestly I think he would treat her ‘special’ no matter – he just loves his ‘baby’ sister as he does his 'baby' brother. Compassionate, yes, but again, I don't think she gets the credit, that is just who he is.
A couple of weeks ago the boys went with me to take Ivey to ballet class. They were so excited. And as we sat in the waiting room I got to see, once again, a level of understanding from him that most adults struggle with. One mom there has four children with special needs, two of the girls were dancing, and two sons were waiting on their sisters too. One of the boys was in a wheelchair, a teenager, distorted speech, awkward body positioning – I spoke to the mom and introduced myself and the boys to her son. Knox never missed a beat – he didn’t appear hear or see the ‘differences’. My heart wanted to explode. Not for any other reason except he treated her son the way I want Ivey treated – I didn’t have to pull him to the side, explain, or persuade him – he is unique in that way. He sees people, not their problems.
Again, his life circumstances have warranted him an opportunity, but this is who he is, with or without Ivey. Life has only given him the opportunity to show the 'real' Knox more often than most.
Personally, I can’t wait to see what is in store for his life. Just as much as I believe Ivey was sent to this Earth to move mountains, so were her two brothers. This particular brother will move just as many, if not more.
At this moment if you were to ask him what he wants to be when he grows up he can already tell you, an engineer. But the kicker is to ask him why. And this he decided all on his own, again as parents we can take no credit, even Matt and I were both left speechless the first time he told us – seriously- this kid is amazing…..
Why? So he can make things that will help people like his sister.
"You're off to great places! Today is your day! Your mountain is waiting! So get on your way!" Dr. Seuss
I have heard people say that having a sister like Ivey will make him more compassionate. That is possibly true I suppose. Just watching him with her would suggest that, but honestly I think he would treat her ‘special’ no matter – he just loves his ‘baby’ sister as he does his 'baby' brother. Compassionate, yes, but again, I don't think she gets the credit, that is just who he is.
A couple of weeks ago the boys went with me to take Ivey to ballet class. They were so excited. And as we sat in the waiting room I got to see, once again, a level of understanding from him that most adults struggle with. One mom there has four children with special needs, two of the girls were dancing, and two sons were waiting on their sisters too. One of the boys was in a wheelchair, a teenager, distorted speech, awkward body positioning – I spoke to the mom and introduced myself and the boys to her son. Knox never missed a beat – he didn’t appear hear or see the ‘differences’. My heart wanted to explode. Not for any other reason except he treated her son the way I want Ivey treated – I didn’t have to pull him to the side, explain, or persuade him – he is unique in that way. He sees people, not their problems.
Again, his life circumstances have warranted him an opportunity, but this is who he is, with or without Ivey. Life has only given him the opportunity to show the 'real' Knox more often than most.
Personally, I can’t wait to see what is in store for his life. Just as much as I believe Ivey was sent to this Earth to move mountains, so were her two brothers. This particular brother will move just as many, if not more.
At this moment if you were to ask him what he wants to be when he grows up he can already tell you, an engineer. But the kicker is to ask him why. And this he decided all on his own, again as parents we can take no credit, even Matt and I were both left speechless the first time he told us – seriously- this kid is amazing…..
Why? So he can make things that will help people like his sister.
"You're off to great places! Today is your day! Your mountain is waiting! So get on your way!" Dr. Seuss
3.08.2011
The Un-teach-able
There are alot of things that I would love to take credit for - alot. But when it comes down to it, I have absolutely no influence..... None. Notta.
Like this morning, Walker was up first (before Knox and Ivey) and came into Ivey's bedroom where Matt and I were (after changing of the guards with the nurse). Unfortunately it was time to get the day going. So Matt went one direction to get ready for work and I went the other to get uniforms out for school. In the meantime, Walker took Matt's place next to Ivey to keep her company while she slept and while I got the clothes.
This is what I came back to at 6:30 am this morning - Ivey still fast asleep with Walker sporadically reading what he could to her from the Lorax.
The photos I snuck before he realized it -
Like this morning, Walker was up first (before Knox and Ivey) and came into Ivey's bedroom where Matt and I were (after changing of the guards with the nurse). Unfortunately it was time to get the day going. So Matt went one direction to get ready for work and I went the other to get uniforms out for school. In the meantime, Walker took Matt's place next to Ivey to keep her company while she slept and while I got the clothes.
This is what I came back to at 6:30 am this morning - Ivey still fast asleep with Walker sporadically reading what he could to her from the Lorax.
The photos I snuck before he realized it -
And this...Ivey's clothes out for the day - complements of Walker.
One black and white striped shirt.
One pair of polka-dotted pants.
One pair of socks.
Shoes.
Without fail- she wore this outfit to school.
She was sound asleep, but I hope his voice sent her sweet dreams. I hope she felt him near her and drifted into a deeper sleep full of security and comfort. I hope that these moments carry on throughout their lives together, always, that they forever remember these times. Both of them.
But without utter fail, these are qualities you just can't teach - I can't teach - these are qualities of the heart.
3.06.2011
To tell you the truth - I don't know which one is having more fun, Lori or Ivey -
When I look at pictures like this, I realize how little I talk about Ivey's League and exactly what and who they are. But part of me holds back from talking about them because their time with Ivey is just that, their time. For a brief moment when they are with her I am the outsider. Ivey is a very blessed little girl surrounded by a rainbow of people with a variety of personalities. She gets a real taste of life, real life from them. I sit as an outsider and see so many kids like Ivey secluded and even more often they may be involved but with limited access provided by parents alone. Not Ivey - she is surrounded.
The best way I have ever found to describe their role in her life is that - they give her something to live for. And on the flipside they are rewarded by unconditional love.
It is things like ballet that become possible for Ivey. And under normal circumstances it would be easy to say that something like ballet is an activity she "can't" do, but to the contrary they are proving that evidence wrong. Oh, it is challenging. Very challenging. They have to think outside of the box. They are learning the ways of this deafblind girl with extra challenges tacked onto her, but they see past those things. It is not easy. Honestly, nothing in Ivey's life is easy, but that is part of her beauty, she has a way of bringing out the best in us, by challenging us to BE OUR BEST. And best doesn't always mean the best, but really the best we can be in challenges and difficult situations, times we find ourselves uncomfortable or uncertain. She pulls the real 'us' out of ourselves. That is when she makes us shine. She is more often than not, intimidating - in a good way - she makes us question ourselves. And I am trying to do what is best by staying out of their way. They are brainstorming and thinking trying to figure out how exactly to include her. It is so hard sometimes. But that is the beauty. So many areas of Ivey's life need my utmost concentration and undivided attention. Not this one. They have her best interest at heart - and that is all that matters. They will figure it out.
In the end - the goal isn't for Ivey to do a dance, no, the GOAL is for Ivey to know she has someone to dance with - and that is ALL that will ever matter to me and Matt. That is our destination +
3.01.2011
Day .... well I can't even keep up with it now.
So the seizures are still with us. Just finished up the clean-up from her latest one - that was exactly 10 minutes ago. My mind is mush.
After a nice little seizure in carline yesterday morning, I was convinced that the two rounds of antibiotics just haven't done their job, and maybe the fact that two straight weeks of seizures is enough. Through wheel spinning between our pediatrician, neurologist and yours truly, we are taking this battle to the next level. For now she will be on a three day round of ativan to try and curtail the seizures. Tomorrow we will begin a month round of a stout antibiotic - and then we will re-evaluate, pending the seizures subside. If this doesn't work I am ready to admit her for IV antibiotics.
It is hard to imagine that something so simple as a sinus infection could inflict such havoc. But maybe this will give you a little insight as to why we avoid illness like it literally is the plague. Bigger things are extremely hard on her little body. But she is tough - not once does she even whine.
And due to all this 'stuff' and the fact that I have homework, yes homework - I have not gotten to the ballet pictures yet. Soon, very soon
After a nice little seizure in carline yesterday morning, I was convinced that the two rounds of antibiotics just haven't done their job, and maybe the fact that two straight weeks of seizures is enough. Through wheel spinning between our pediatrician, neurologist and yours truly, we are taking this battle to the next level. For now she will be on a three day round of ativan to try and curtail the seizures. Tomorrow we will begin a month round of a stout antibiotic - and then we will re-evaluate, pending the seizures subside. If this doesn't work I am ready to admit her for IV antibiotics.
It is hard to imagine that something so simple as a sinus infection could inflict such havoc. But maybe this will give you a little insight as to why we avoid illness like it literally is the plague. Bigger things are extremely hard on her little body. But she is tough - not once does she even whine.
And due to all this 'stuff' and the fact that I have homework, yes homework - I have not gotten to the ballet pictures yet. Soon, very soon
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Sibling Secret Sauce
Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling w...
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Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling w...
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