Last night we had some very dear and old friends over for dinner. We used to spend several evenings a month with them before we all had children. Now they have two beautiful girls, ages 4 and 2. What Michael and I had hoped would be a lovely evening sharing pizza and watching our children play together became my own personal mommy nightmare.
It was the end of the night and miraculously the guest children had not noticed nor commented on Madeleine's leg. I was pondering how this was so unusual as all the kids were taking turns walking on the treadmill in their bare feet of socks. Madeleine had bare feet.
Right before our friends were to leave Madeleine decided that she wasn't getting enough attention and yelled to the girls, "look at me.... I'm taking my leg off!" she kicked her prosthesis off, sending it flying across our living room. Our guests kept their composure (good parenting!) and just looked wide eyed. I apologized and bid our friends good night.
When they were gone Madeleine and I had a long chat. She admitted that she felt the girls liked Max better so she wanted to get some attention. I explained to her how inappropriate it was and that she should have shown the girls her leggie first and then described the procedure and her distal limb.
sigh.
Saturday, January 7, 2012
Friday, December 30, 2011
Professional blog post part deux
Remember that professional blog post I was going to write? This is what I wrote. I don't have the balls to publish it to my professional blog (that I do not write. New Years Resolution #1).
Here it goes:
When my husband and I became pregnant with twins we often joked about which twin would get the disability and what disability they would get. Sounds crazy?!
I am a special ed teacher. I became one because I love kids. I love kids who are challenged and quirky. I love the creativity that my job affords me. I don't have to use the 'district' curriculum to reach a kid... I can and often do, but I don't 'have' to.
Special education is a very confusing subsect of our educational system. In plain terms it means a student who requires specially designed instruction to access the general education system. Dictionary.com describes it as: "education that is modified or particularized for those having singular needs or disabilities, as handicapped or maladjusted people, slow learners, or gifted children."
I have two issues with this definition. 1) we don't really use the word "maladjusted" anymore, nor "handicapped". 2) I believe that this definition is a little narrow. I do like, however, that they included "gifted" because many gifted learners also need specially designed instruction and... many 'slow learners' are also gifted. In the months and weeks to come I will continue to break down the definition of special education and also try to break down some barriers and ideas that often accompany the term.
Today I want to talk to you about my personal story. I knew, the way a med student diagnoses his own ailments that I would have a child with special needs. I knew when they said I was having twins there would be a very big chance of having a child who qualified for special education (cerebral palsy is common in twins citation here). My husband and I considered what it would be like to have a child with autism, with Down Syndrome, with CP, ADHD, LD and all the other acronyms. What we were not prepared for was the diagnoses that was given to our daughter.
I'm going to digress again....
When I was a young graduate from the University of Washington (college of education) I thought I knew what it was like for these parents who sat on one side of the table during meetings. I was presumptuous and obnoxious to an extent. I always felt bad for them ("must be hard to parent a child with autism." "Wow, they need routines and consistency to help their child with ADHD") and tried to understand, to be empathetic, to help in the best way I knew how. But honestly, I didn't know what it was like to have a child with a disability. I didn't know what it was like for them to hear those words. To write their child's health plan, IEP or IFSP (definitions to come). I will never know what it is like to be a parent of a child with Down Syndrome because I am not one.
My daughter was born with a disability. I know what it is like to hear a doctor say there is something wrong. I know how it feels to have your heart broken. What it is like to not know the outcome. What it is like to not know what the diagnoses means.
We found out while I was pregnant that something was wrong orthopedically; there was something wrong with her leg. We didn't know what it meant or what it entailed. Several tests and meetings with doctors later we found out it was called Fibular Hemimelia. This is a rare condition that I have been told happens in one out of 750,000 births. Needless to say we knew nothing about it.
Madeleine's leg was amputated when she was 12 months old. She wears a prosthetic leg, also called a prosthesis, or in our family: a leggie. Madeleine is a happy, healthy and very typical 5 year old. She loves to ride her bike, swim, climb and is very social.
The birth of Madeleine has not only made our lives better but has made my special education practice better. I can empathize with my families now. Madeleine's 'disability' is on the outside. You can see it. For many of my students the disability is on the inside and not so apparent.
I think special education is a very misunderstood banner. I tell people I teach special ed and they think I put in feeding tubes and clean up poop all day. They say, 'wow, you are a saint' or "sheesh, that must be hard". In reality I work with some of the most delightful kids. Ones who want to overcome their dyslexia, ADHD or understand why and what the autism spectrum is. Sure, I get refusals to work. I understand that the refusals represent fear, misunderstanding, confusion etc. I try to figure out what the behavior is saying that the kid can't.
I work like a physician. This is what I tell the kids. If you have a rash or a cough and you go to the doctor they have to figure out what it is that is making you sick and what medicine will make you better. My job is similar, I find out why the kid can't read. What is it that is getting stuck and then I find the right curriculum to help him read. Sometimes I have to try different things. Sometimes it doesn't work as well as I'd like but sometimes it is just what the doctor ordered. And a veil is lifted. And the kid figures it out. And he his self-esteem jumps so high and he feels like he can do anything, because he can. And then I sit back and say, "wow, my job rocks".
Here it goes:
When my husband and I became pregnant with twins we often joked about which twin would get the disability and what disability they would get. Sounds crazy?!
I am a special ed teacher. I became one because I love kids. I love kids who are challenged and quirky. I love the creativity that my job affords me. I don't have to use the 'district' curriculum to reach a kid... I can and often do, but I don't 'have' to.
Special education is a very confusing subsect of our educational system. In plain terms it means a student who requires specially designed instruction to access the general education system. Dictionary.com describes it as: "education that is modified or particularized for those having singular needs or disabilities, as handicapped or maladjusted people, slow learners, or gifted children."
I have two issues with this definition. 1) we don't really use the word "maladjusted" anymore, nor "handicapped". 2) I believe that this definition is a little narrow. I do like, however, that they included "gifted" because many gifted learners also need specially designed instruction and... many 'slow learners' are also gifted. In the months and weeks to come I will continue to break down the definition of special education and also try to break down some barriers and ideas that often accompany the term.
Today I want to talk to you about my personal story. I knew, the way a med student diagnoses his own ailments that I would have a child with special needs. I knew when they said I was having twins there would be a very big chance of having a child who qualified for special education (cerebral palsy is common in twins citation here). My husband and I considered what it would be like to have a child with autism, with Down Syndrome, with CP, ADHD, LD and all the other acronyms. What we were not prepared for was the diagnoses that was given to our daughter.
I'm going to digress again....
When I was a young graduate from the University of Washington (college of education) I thought I knew what it was like for these parents who sat on one side of the table during meetings. I was presumptuous and obnoxious to an extent. I always felt bad for them ("must be hard to parent a child with autism." "Wow, they need routines and consistency to help their child with ADHD") and tried to understand, to be empathetic, to help in the best way I knew how. But honestly, I didn't know what it was like to have a child with a disability. I didn't know what it was like for them to hear those words. To write their child's health plan, IEP or IFSP (definitions to come). I will never know what it is like to be a parent of a child with Down Syndrome because I am not one.
My daughter was born with a disability. I know what it is like to hear a doctor say there is something wrong. I know how it feels to have your heart broken. What it is like to not know the outcome. What it is like to not know what the diagnoses means.
We found out while I was pregnant that something was wrong orthopedically; there was something wrong with her leg. We didn't know what it meant or what it entailed. Several tests and meetings with doctors later we found out it was called Fibular Hemimelia. This is a rare condition that I have been told happens in one out of 750,000 births. Needless to say we knew nothing about it.
Madeleine's leg was amputated when she was 12 months old. She wears a prosthetic leg, also called a prosthesis, or in our family: a leggie. Madeleine is a happy, healthy and very typical 5 year old. She loves to ride her bike, swim, climb and is very social.
The birth of Madeleine has not only made our lives better but has made my special education practice better. I can empathize with my families now. Madeleine's 'disability' is on the outside. You can see it. For many of my students the disability is on the inside and not so apparent.
I think special education is a very misunderstood banner. I tell people I teach special ed and they think I put in feeding tubes and clean up poop all day. They say, 'wow, you are a saint' or "sheesh, that must be hard". In reality I work with some of the most delightful kids. Ones who want to overcome their dyslexia, ADHD or understand why and what the autism spectrum is. Sure, I get refusals to work. I understand that the refusals represent fear, misunderstanding, confusion etc. I try to figure out what the behavior is saying that the kid can't.
I work like a physician. This is what I tell the kids. If you have a rash or a cough and you go to the doctor they have to figure out what it is that is making you sick and what medicine will make you better. My job is similar, I find out why the kid can't read. What is it that is getting stuck and then I find the right curriculum to help him read. Sometimes I have to try different things. Sometimes it doesn't work as well as I'd like but sometimes it is just what the doctor ordered. And a veil is lifted. And the kid figures it out. And he his self-esteem jumps so high and he feels like he can do anything, because he can. And then I sit back and say, "wow, my job rocks".
no limitations
Is it actually possible that I haven't written a blog post since September? Teaching full time and parenting full time will do that to you I suppose. It is hard to know where to start and what brought me to writing at 7 am this morning while my family sleeps.
It seems that so much has happened since September, really it hasn't. We are the same family. We live in the same house. We eat the same meals. Michael is now forty. ha ha.
I think it feels like so much has happened since September because Kindergarten has started and I have learned more about my children. I'm surprised that there are aspects of them that I didn't know. I watch them from my office window on the playground and observe how they interact with children when I'm not around. What activities they prefer. Who they are drawn to and how they solve conflict. It is fascinating. I'm a lucky mom that I can see this.
Do you remember my fears? I can't remember if I wrote them. I can't remember if I published them. I was afraid of the novelty of Madeleine's leg. I was going to write in my professional blog how awesome my daughter is and why you shouldn't stare. I didn't do it. I tried. I wrote the stupid post and I never published it.
Why?
Because Madeleine took care of it herself. Because she didn't need me to do it. Because she is amazing and can do anything she wants to and it isn't fair for me to discuss it with others until Madeleine has a chance to prove it. Remember this story? http://madeleineandmax.blogspot.com/2011/09/first-day-of-kindergarten.html
Yeah, she rocked it. She usually does.
She doesn't talk about her leg anymore. Kids don't ask. I went into the upper grades and explained the circumstances to all the kids and they were awesome. They asked thoughtful questions and contributed appropriately. I was very proud of them. Parents still ask me and are surprised to find this out about my daughter. But I'm ok with that.
Today Madeleine continues to rock it. She is learning (and determined to master) to ride a unicycle. She got a skateboard for Christmas and for crying out loud she can ride it. I took her ice skating and she didn't need to hold the 'chair' for longer than three cycles. She continues to move beyond my expectations. I need to learn to not expect limitations.
It seems that so much has happened since September, really it hasn't. We are the same family. We live in the same house. We eat the same meals. Michael is now forty. ha ha.
I think it feels like so much has happened since September because Kindergarten has started and I have learned more about my children. I'm surprised that there are aspects of them that I didn't know. I watch them from my office window on the playground and observe how they interact with children when I'm not around. What activities they prefer. Who they are drawn to and how they solve conflict. It is fascinating. I'm a lucky mom that I can see this.
Do you remember my fears? I can't remember if I wrote them. I can't remember if I published them. I was afraid of the novelty of Madeleine's leg. I was going to write in my professional blog how awesome my daughter is and why you shouldn't stare. I didn't do it. I tried. I wrote the stupid post and I never published it.
Why?
Because Madeleine took care of it herself. Because she didn't need me to do it. Because she is amazing and can do anything she wants to and it isn't fair for me to discuss it with others until Madeleine has a chance to prove it. Remember this story? http://madeleineandmax.blogspot.com/2011/09/first-day-of-kindergarten.html
Yeah, she rocked it. She usually does.
She doesn't talk about her leg anymore. Kids don't ask. I went into the upper grades and explained the circumstances to all the kids and they were awesome. They asked thoughtful questions and contributed appropriately. I was very proud of them. Parents still ask me and are surprised to find this out about my daughter. But I'm ok with that.
Today Madeleine continues to rock it. She is learning (and determined to master) to ride a unicycle. She got a skateboard for Christmas and for crying out loud she can ride it. I took her ice skating and she didn't need to hold the 'chair' for longer than three cycles. She continues to move beyond my expectations. I need to learn to not expect limitations.
Thursday, September 8, 2011
First Day of Kindergarten
Max:
Max is a friend magnet. He made so many friends his first day. He is compliant and polite. He loves the three aquatic turtles in his classroom. He told me that if he knew how fun kindergarten would be he would have wanted to go there earlier and we wouldn't have been so nervous.
Madeleine:
Madeleine had a very hard drop off. In fact, I couldn't drop off. She clung to me shaking, sobbing. She was terrified. I stayed with her for a while and then Michael came and hung out with her. Eventually, an hour after school started he was able to leave her.
Rachel, Mad's kindergarten teacher, started the morning off with having the kids come to the carpet and sit in a circle. She asked if anyone knew what the word, "unique" meant. Some students volunteered answers like "it means fancy" or "special". Rachel totally went with it. And told them we are all unique and have to get to know each other and what makes us special. She discussed her own unique things and talked about others that she knew. She asked if someone wanted to share what is unique about them. A few students raised their hands, Mad was one of them. She complimented Madeleine on raising her hand well and being patient and then asked what she would like to share.
Madeleine's words:
"You see this thing on my leg? I have to wear it because I was missing a bone in my leg, the fiblia (fibula). My leg didn't grow very well when I was in my mom's belly and now I wear this and I have to wear it everyday. It is called a prosthesis. I can hop really well. (to Rachel...) May I get up and show the kids how I can hop?"
She proceeded to do Tree Pose and then hopped all around the room and then it was done.
Since then other kids have asked.... she is tired of the questions. I will go in next week and talk to all the other classes.
Max is a friend magnet. He made so many friends his first day. He is compliant and polite. He loves the three aquatic turtles in his classroom. He told me that if he knew how fun kindergarten would be he would have wanted to go there earlier and we wouldn't have been so nervous.
Madeleine:
Madeleine had a very hard drop off. In fact, I couldn't drop off. She clung to me shaking, sobbing. She was terrified. I stayed with her for a while and then Michael came and hung out with her. Eventually, an hour after school started he was able to leave her.
Rachel, Mad's kindergarten teacher, started the morning off with having the kids come to the carpet and sit in a circle. She asked if anyone knew what the word, "unique" meant. Some students volunteered answers like "it means fancy" or "special". Rachel totally went with it. And told them we are all unique and have to get to know each other and what makes us special. She discussed her own unique things and talked about others that she knew. She asked if someone wanted to share what is unique about them. A few students raised their hands, Mad was one of them. She complimented Madeleine on raising her hand well and being patient and then asked what she would like to share.
Madeleine's words:
"You see this thing on my leg? I have to wear it because I was missing a bone in my leg, the fiblia (fibula). My leg didn't grow very well when I was in my mom's belly and now I wear this and I have to wear it everyday. It is called a prosthesis. I can hop really well. (to Rachel...) May I get up and show the kids how I can hop?"
She proceeded to do Tree Pose and then hopped all around the room and then it was done.
Since then other kids have asked.... she is tired of the questions. I will go in next week and talk to all the other classes.
Tuesday, September 6, 2011
professional blog
I have a professional blog that I never post on. It seems that I'm too busy as a professional to even have time to professionally blog. If I write on this blog it goes out to all the parents at the school and anyone on the PTSA list serve. That is a lot of people and a lot of pressure. When you blog professionally you have to be appropriate (which is sometimes hard for me), spell check, grammar check and realize that you are going to get feedback... both positive and negative. I'm suppose to write on this blog as it is an unwritten suggestion of the school. Teaching at a 21st century school means that you should be blogging just like your students are. I'm also suppose to write on it because I'm an advocate for special education. I'm the only special ed teacher at the school and with that comes responsibility to educate, advocate, promote etc. I think special education is a very misunderstood banner. I tell people I teach special ed and they think I put in feeding tubes and clean up poop all day. They say, 'wow, you are a saint' or "sheesh, that must be hard". In reality I work with some of the most delightful kids. Ones who want to overcome their dyslexia, ADHD or understand why and what the autism spectrum is. Sure, I get refusals to work. I get an occasional fuck you. But who doesn't? I understand that the refusals and the fuck yous represent fear, misunderstanding, confusion etc. I try to figure out what the behavior is saying that the kid can't.
I work like a physician. This is what I tell the kids. If you have a rash or a cough and you go to the doctor they have to figure out what it is that is making you sick and what medicine will make you better. My job is similar, I find out why the kid can't read. What is it that is getting stuck and then I find the right curriculum to help him read. Sometimes I have to try different things. Sometimes it doesn't work as well as I'd like but sometimes it is just what the doctor ordered. And a veil is lifted. And the kid figures it out. And he his self-esteem jumps so high and he feels like he can do anything, because he can. And then I sit back and say, "wow, my job rocks".
So, I need to blog today. I need to introduce myself to the community and help them to understand special education and what it means. I hope to clean up misconceptions and open eyes to behaviors and learning styles.
But, I'm also going to do something else today. I'm going to explain Madeleine. I'm going to tell everyone what happened. I'm going to tell them what it is like to be her mom. I know, I've told this story countless times but I'm going to put it out there for the world so that Madeleine maybe doesn't have to explain her leggie again. So that parents can talk to their kid about her leg in an educative and supportive way. I'm going to put it out there so others may understand that Madeleine's "disability" is on the outside but there are many kiddos whose disability is on the inside and you may not see it until that kid has a meltdown. And before you think, "God, what is up with THAT kid" or "where are his parents?" you will think, maybe he has a disability and cannot control his emotion and the way that child X is struggling with reading on the inside Child Y is struggling with emotion regulation and that he can't control it any better than X can control his dyslexia.
I'm going to write a professional blog post here, in my supportive and private place ;)
And then copy it there (insert hyperlink to prof. blog here).
Feel free to tell me what you think.... it will go out later today or tomorrow.
xoxo,
Niki
I work like a physician. This is what I tell the kids. If you have a rash or a cough and you go to the doctor they have to figure out what it is that is making you sick and what medicine will make you better. My job is similar, I find out why the kid can't read. What is it that is getting stuck and then I find the right curriculum to help him read. Sometimes I have to try different things. Sometimes it doesn't work as well as I'd like but sometimes it is just what the doctor ordered. And a veil is lifted. And the kid figures it out. And he his self-esteem jumps so high and he feels like he can do anything, because he can. And then I sit back and say, "wow, my job rocks".
So, I need to blog today. I need to introduce myself to the community and help them to understand special education and what it means. I hope to clean up misconceptions and open eyes to behaviors and learning styles.
But, I'm also going to do something else today. I'm going to explain Madeleine. I'm going to tell everyone what happened. I'm going to tell them what it is like to be her mom. I know, I've told this story countless times but I'm going to put it out there for the world so that Madeleine maybe doesn't have to explain her leggie again. So that parents can talk to their kid about her leg in an educative and supportive way. I'm going to put it out there so others may understand that Madeleine's "disability" is on the outside but there are many kiddos whose disability is on the inside and you may not see it until that kid has a meltdown. And before you think, "God, what is up with THAT kid" or "where are his parents?" you will think, maybe he has a disability and cannot control his emotion and the way that child X is struggling with reading on the inside Child Y is struggling with emotion regulation and that he can't control it any better than X can control his dyslexia.
I'm going to write a professional blog post here, in my supportive and private place ;)
And then copy it there (insert hyperlink to prof. blog here).
Feel free to tell me what you think.... it will go out later today or tomorrow.
xoxo,
Niki
Thursday, September 1, 2011
I forgot
Tonight we had our "Back To School" night or "Ice Cream Social" or "Open House" or whatever it is called. My children are fortunate to go to a school in a great neighborhood, with a great principal and staff, with great families etc. queenannelementary.com
I have worked at QAE since last year and believe whole heartedly in the mission, the goals, the curriculum, the staff, blah blah blah. I have known that Max and Mad would go there for a awhile and I have hoped that they would for a year.
So, tonight was back to school night and I was full of anticipation and excitement. I couldn't wait to show Michael and the twins the new digs. Couldn't wait to see some of my students that I have missed throughout the summer. I was happy to show off our new building. Usually this is my favorite time of the year. For reals.
Tonight something unexpected happened. Madeleine was introduced to her peers and not all of them welcomed her with open arms as they usually do in my dreams. They were perplexed with her leg. They were wondering what it was. Some tried to touch it. Some asked incessant questions. Some just stared with open mouths and disgusted looks. It broke my heart. My heart continues to break as I sit here. I have cried more tonight than I have in a while. I just forgot. I forgot that people would be surprised. I forgot that people didn't know.
Adults ask me about it and I'm surprised that they don't know. Some are so clueless they actually say, "What's up with her leg?" I know it is because they don't anticipate I will say, "It's a prosthesis. She was born with a birth defect and had her foot amputated at a year." They look at me shocked and apologize.
I wonder if some people who see someone in a wheel chair, "What's up with the chair?"
Or with someone with autism, "what's up with the hand flapping?"
Or with someone who walks with arm crutches, "What's up with the sticks?"
I forgot. I have to explain. I have to worry again if people will accept my little girl. I have to worry about her feelings getting hurt because no one wants to play with her. I have to worry about little girls not wanting to be her friend. Fuck.
Madeleine will have to explain too. She told me today that she missed the EEU. She missed her teachers knowing. She missed the kids.
I know this is an adjustment and things will work out. I'm feeling blind-sighted and angry. And, of course, a little sad.
Here we go again.....
I have worked at QAE since last year and believe whole heartedly in the mission, the goals, the curriculum, the staff, blah blah blah. I have known that Max and Mad would go there for a awhile and I have hoped that they would for a year.
So, tonight was back to school night and I was full of anticipation and excitement. I couldn't wait to show Michael and the twins the new digs. Couldn't wait to see some of my students that I have missed throughout the summer. I was happy to show off our new building. Usually this is my favorite time of the year. For reals.
Tonight something unexpected happened. Madeleine was introduced to her peers and not all of them welcomed her with open arms as they usually do in my dreams. They were perplexed with her leg. They were wondering what it was. Some tried to touch it. Some asked incessant questions. Some just stared with open mouths and disgusted looks. It broke my heart. My heart continues to break as I sit here. I have cried more tonight than I have in a while. I just forgot. I forgot that people would be surprised. I forgot that people didn't know.
Adults ask me about it and I'm surprised that they don't know. Some are so clueless they actually say, "What's up with her leg?" I know it is because they don't anticipate I will say, "It's a prosthesis. She was born with a birth defect and had her foot amputated at a year." They look at me shocked and apologize.
I wonder if some people who see someone in a wheel chair, "What's up with the chair?"
Or with someone with autism, "what's up with the hand flapping?"
Or with someone who walks with arm crutches, "What's up with the sticks?"
I forgot. I have to explain. I have to worry again if people will accept my little girl. I have to worry about her feelings getting hurt because no one wants to play with her. I have to worry about little girls not wanting to be her friend. Fuck.
Madeleine will have to explain too. She told me today that she missed the EEU. She missed her teachers knowing. She missed the kids.
I know this is an adjustment and things will work out. I'm feeling blind-sighted and angry. And, of course, a little sad.
Here we go again.....
Thursday, August 25, 2011
Kindergarten, how is this possible?
It has been on the horizon. It has been on my mind. I am now sitting on a deck in paradise, also know as lake kachess in Washington state. I am without my children and sitting here blogging on my iPad in my running clothes.
So, what does any of this have to do with kindergarten?
I work at the very best school in the world: queenanneelementary.com
I am on a retreat Homeaway.com discussing how to make my school even better. I'm sitting with a very energetic staff and an amazing leader. What is so fantastic is that I get to share this with Max and Madeleine.
Come September 7th Madeleine and Max will walk through the elementary doors as kindergartners. I can't wait.
So, what does any of this have to do with kindergarten?
I work at the very best school in the world: queenanneelementary.com
I am on a retreat Homeaway.com discussing how to make my school even better. I'm sitting with a very energetic staff and an amazing leader. What is so fantastic is that I get to share this with Max and Madeleine.
Come September 7th Madeleine and Max will walk through the elementary doors as kindergartners. I can't wait.
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