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.