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. 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. 
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?
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 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 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.


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.

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:

I am on a retreat 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.

Tuesday, June 28, 2011


So Madeleine learned to ride a two wheeler on her *exact* 4.5 year old birthday, that is December 22nd.  Somehow, my girl, and her competitive nature heard tell that someone around her age was riding a bike WITHOUT training wheels and she just had to do it herself.  First she started with a balance bike and quickly moved on to a full on two wheeler. She was so very proud of herself and now that she has graduated to a 16 inch she is a serious cyclist!

For the record, Max learned just a few months after his sister but isn't quite so sure footed as she.

Monday, June 27, 2011

summer time

Summer time is a mixed bag in our family, for many reasons. Today, one of them came clear again to me.  It is what my friend and I call, short season. Meaning that this is the time when we are all in shorts/skirts etc. That doesn't sound so bad, right? Except when you wear a prosthetic leg.  When you wear shorts it becomes really obvious.

Madeleine usually doesn't notice (or doesn't care) the staring. I do. I notice it big time. Sometimes kids are rude and say weird things (what is that?  What happened to your leg? Why is there a hole in your foot? Do you have to wear that? Is it a cast?) Sometimes they whisper and point. Sometimes they run from her. Yep, it's true. One time a kid told me it was "creepy".

Yesterday we were at a public pool in a different town and this 11-ish year old girl was staring so bad I thought her eyes would pop out. She followed us around the pool. I tried the smiling technique: you catch their eyes, look straight into them and smile really big. That didn't work. Finally she said, "what happened to her foot?"  I explained. Then she asked if she could still swim without a foot. Madeleine demonstrated. Later Madeleine wanted to put her leggie on and see if she could swim in it. The girl came back and asked more questions and when Madeleine showed her the leg she said, (and I quote) "Ew, Oh My God". 

Today my kid rocked greenlake (2.8 miles) on her two wheeler bike. She rode the whole time and rocked it. We finished at the playground and two little girls were whispering and pointing and staring. I was fed up. I looked at the girls and said, "it is impolite to stare, if you are curious you can ask her questions but please don't just stare."  They walked away.

Just venting. Parent, teach your kids that staring is rude. You can be curious and ask questions but please respect peoples' differences.

Wednesday, June 22, 2011

To Max on his 5th birthday

Dear Max,
At 5:59 am you will turn exactly 5 years old. I sit here wondering how five years have gone by so quickly. It is like yesterday that you came out a perfect little tiny baby. It was yesterday when I held you in my arms afraid that I may not be able to take care of you. You struggled with eating, coming out of the womb too early. You seemed so frail then. Small, but perfect. Perfect and peaceful you were, such a sweet baby even then. So beautiful with your daddy's face. I searched your tiny features trying to find a piece of me... your eyes... we have the same eyes.

Now you are a big boy. You are beginning kindergarten in the fall. You are tall and lean and lovely. You are articulate with incredible expressive language, able to tell me your thoughts, feelings and wishes. He loves with his whole heart and knows what is right and wrong. He knows what it means to be a good citizen, to be a citizen of the world and what it means to be a good friend. I admire this in you.

In your fourth year you learned how to ride a bike. Your sister had already mastered it and you seemed intimidated. But now, now you can ride. You can glide with your two wheels and two pedals. You are very proud of yourself, as much as mommy and daddy are.

You love to keep journals. You do scientific observations on our fish, Sam, on plants and worms and slugs and bugs. You record their actions in illustrations and then pretend to write about them. I'm proud of you for paying such close attention to detail and understanding that the world is constantly changing and constantly interesting.

Your favorite thing to do is to play pretend games with your friend, Oliver, at school. I'm not sure what you play but I know you have fun. At home you play with Daddy. You play cars, and helicopters, and monsters and super heroes. Your imagination is endless.

Right now you love the magical world of Harry Potter, just like I had hoped you would. You and I share the wonder of the story. We are both enchanted by the idea of another world; I cannot wait to continue the journey with you as you grow.

Lately you have become interesting in building with Legos. We love that. We love your attention to it and your imagination that comes with it. Daddy and I love that you can spend hours building and playing.

Around the house you enjoy working in the garden with Mommy and cooking in the kitchen with Daddy. In fact, you are already a better cook than Mommy! If I give you a chore around the house to do I know that you will see it through. You have cleaned the bathroom, cleaned the floors, vacuumed, made the bed, folded the clothes and done the laundry.

Max, you are a better soul than I could have ever hoped for. You brighten my day and warm my heart. I appreciate your kindness and good attitude. I love that you can 'roll with the punches' and take things in stride. You are a good friend and a good brother. I cannot believe that I have been blessed with you for five years. I feel so fantastically lucky.

I love you, my son. Enjoy your special day and I cannot wait for us to be at the same school next year!

Macky, my love, you are my dream come true.

To Madeleine, on her fifth birthday

Dear Madeleine,
At 6:00 am you will be exactly five years old. I sit here wondering how that is even possible. How five years have flown by. You know that from the very start you were different. Somehow I knew this. I cannot explain how I always felt so protective. How I knew that with you I would have to hold on tight.
Half way through your new existence in my womb we found out about your leggie. I knew you would be okay but I never knew how fantastically awesome you would be! You were my little fearless fighter from day one. You came home first from the hospital. You were the first to nurse. Oh, how much I loved looking into your tiny and precious face. Your leg was different but inexplicably gorgeous and perfect for you. A tiny ballerina.
Now you have a super hero leg with super girl on it. This is not coincidence! You, my lovely, are a super girl! You amaze the people around you! You rode a two wheeler bike at four and a half. Now you have your eyes set on riding a unicycle! And I have no doubt that you will do that!
You are such a smarty, trying to read and spell new words. You love the freedom of writing and reading. I cannot wait to see you in kindergarten.
Although you have many friends you seem to stick to a few that really stand out for you. I know that Logan will always hold a special place.
At home you love to be active. You love to climb the rhododendron tree. You run, ride your bike, scooter and climb everywhere. You love love love to swim! And can swim on top and under water by yourself. I know that you will continue to be active and sporty your whole life and I admire this about you.
Madeleine, you never cease to amaze and surprise me. I love you my sweet with all that I am. There is no doubt that you were given to me for a reason. There is no doubt that you are on this earth to prove. I can't wait to see who you turn out to be as you have already exceeded all my expectations!
I love you, sweet baby girl, enjoy your special day of being five! I cannot wait for the fall when we have our endless mommy-days together.
I love you,

Saturday, March 12, 2011

more surgeries

We are very thankful that Madeleine has only had to have one surgery. In fact, this is why we chose to go the amputation route as oppose to lengthening and reconstruction. Although since Madeleine's foot has been amputated and her lower leg is missing the fibula people often think (myself included) that she no longer has leggie problems. That her 'disability' is confined to her lower leg and foot only but in actuality we entire left leg was affected. Her knee continues to grow deformed and her femur (thigh bone) continues to grow short. She will need another surgery in a few years to correct the position of her knee again.

I don't think of this too often. It is hard for me to consider having my child (either one of them) go through another surgery. We don't talk about it. Every 6 months when I see Dr. Mosca I ask him when the surgery will be. The response is always, "that depends on how her leg grows, 5, 6, 7 years old, not sure".

I have two friends whose babies went through a second surgery after amputation. My friend Rena's daughter Leah. Also born with Fib Hem. Her heal pad slipped (this is common in a syme amputation) and she needed to have it repositioned. And my dear friend Jenna's son, Logan. He need to have his hip corrected. Both children went through excruciating pain upon recovery. Both children spent several nights in the hospital. Both families went through the pain and agony of seeing their child suffer and knew the torture that there is absolutely nothing you can do about it except to hold them in your arms and try to reassure them that it will all be over quickly.

I know how they feel. And I have said a prayer for them a few times a day.

I will not discuss spirituality here but I will say that these mommas probably did not need my prayers. They are strong fighting ladies that will take someone down if needed. They are strong and confident for their babies.

Hope I can be the same for Madeleine when her surgery comes.

All okay...

Many know by now that my health is fine. My breast sports a purple scar but luckily the lump of tissue taken was confined to that area and I was deemed okay.

I'm going in for my follow up mammogram next month. When I think about it my heart beats a bit faster but I still feel pretty good.

Despite my lack of writing I'm still okay. My children are happy and healthy and a tiny bit sassy.

Michael is good. He is healthy and lively. I say that because he still makes me laugh.

Me? I'm busy as a bee and as tired as a 'I don't know what' but I'm in good health and very thankful.

And trying damn hard to resurrect this blog....