Friday, September 27, 2013

A Letter to a Middle Aged 7th Grade Teacher

Ms. ______,
This letter will not be polite and I do not apologize for my anger.
I strive to raise moralistic, responsible, friendly, and kind children.  Beside the obvious reason that it is the right thing to do, my youngest child's life depends on his older siblings having those qualities.  You see, they will likely be the only caregivers he has when my husband and I leave this earth.  My youngest child has Down syndrome and at 5, functions moderately well but if his level of functioning continues at the same rate, it is a real possibility that he will not live independently.  I deal in statistics often, real possibilities are to be prepared for. 
My youngest child has an IEP at his school.  His eligibility ruling for SPED was Mental Retardation.  If he ever has an IQ test, his IQ will likely fall in the Mental Retardation range.  Rosa's Law has changed much of the terminology in government documents because the President, rightfully, listened to advocates (self and family) who said "retardation" has an extremely negative connotation for those who live with learning disorders, developmental delays, and medical diagnoses.  The word carries the weight of genocide, mental institutions, civil rights violations, and bullying.  For those of us that love and have compassion in our hearts for how words can puncture self-esteem and cause pain, we do not look for the banning of a word, just for others to have the common decency not to use it.  To CARE about feelings....especially of children.

I understand another parent has already contacted you about your use of the word "retard."  I'm assuming you either do not care that it is offensive, or it is such a habit for you, that you cannot stop.  I wonder what other inappropriate things you say in front of your students. 

With the very little respect that I still have for you, I say GROW UP!  You are not your students.  You are not 13.  Speak like a grown woman.  Speak with less offensive terms.  Speak with respect and kindness. 
Don't give me a silly, immature excuse that you weren't calling someone a "retard", much less a person with a label of mental retardation, because that is not the point. The point is: Saying that a silly, gross, or accidental deed is retarded is the same as saying it is similar to what a person WITH mental retardation would do.   That showing an empty mouth void of gum is equivalent to scoring two standard deviations below the mean of an IQ test.  That it is equivalent to being slowed in development or progress.  

Shame on you for setting such a low example for impressionable youth who already bully and show a distinct lack of kindness and empathy toward others.

Let me give you a scenario:  You have a child with a learning disorder in your class.  Or perhaps a child that is a little socially awkward.  Outside of your classroom, in the hallways, the other children look at him with disgust and say, "Retard", "You're so retarded" or "That's so retarded" when he drops a pencil.  This bullying, of course, hurts him.  Then he steps in your class and expects safety.  But no, even the teacher says the word.  You are not talking about him personally, but you used the same offensive term as every other unkind 13 year old.  Again, GROW UP.
You can assume I'm the word police.  I don't care.  If you cannot control your mouth, please let me know and I will transfer my son from your class in a heartbeat.  He has already heard his brother referred to as a retard.  The word cuts into him just as it does me.  If you will treat him any differently due to him telling me how your words hurt, let me know and I will gladly transfer him to a more mature-speaking teacher.  (I wouldn't even tell anyone if you admitted to that.) 
I do not need nor want an apology.  I demand improvement and respect for those that are often not able to demand respect for themselves. Respect their history and the struggles they face daily. Respect that the word, to thousands of ears, sounds just like other slurs that I won't even lower myself to type.  It is corrosive and divisive.  If you need better, less offensive words, I can buy you a thesaurus.  They are not expensive.  Seriously, let me know.
To the administration I have copied on this email, feel free to remove Ms. ____'s name and share this with all your teachers.  Perhaps sensitivity training.  I can come and give a talk to them if my point was not clear enough.  If you need more information on why the word is offensive and considered a slur (as opposed to slang), I can certainly provide that as well.  For now, this one will do:

Angrily and fed up,
Holly Fedele

Saturday, September 14, 2013

Moments of Hurt

The Background

I have never written birth stories for any of my kids, and I don't know if I ever will.  This post is not Trent's birth story but it will contain moments from it.

I did not know that Trent had Down syndrome before he was born.  My c-section, to be the third one, was scheduled for a few days in the future but I went into labor on my own.  

As the team prepared me for surgery, it was discovered that Trent was in distress.  My husband, who had watched the first two c-sections, knew the procedure of it fairly well.  This one, however, was different.  He later told me how horrified he was by it all.  They rushed with the cutting and the delivering in order to save Trent.  They were so rough while pulling him out, my body was being lifted off the table.  The doctor was elbows in.

Trent was quickly whisked away and our nightmare began.  He was transferred to a larger hospital out of state.  I had no chance to recover or rest from the c-section and my incision became infected.  It oozed puss, blood, and clear liquids.  The top layers would break open.  Dissolvable stitches kept coming out instead of dissolving.  I was wearing feminine pads against my belly. 

Between driving out of state to spend time with Trent and trying to treat my own infection, I was pumping breast milk in order to maintain my supply. Giving Trent my milk, with all its nutrients and antibiotics, via his feeding tube was a top priority for me.  It was one aspect of my life that I felt I could control. I would pump consistently throughout the day and set my alarm to wake up and pump during the night.

At two months old, Trent had open heart surgery.  Up until that time, we were told he would not gain weight due to his heart condition.  We were told he would begin growing like a weed as soon as his heart was fixed.  It didn't happen.

A little more than a week after his surgery, he began vomiting and having diarrhea.  I took him to the doctor and was told to do the clear eletrolyte regimen.  He was fine as long as he drank the electrolyte drink but as soon as I gave him breast milk or the high calorie formula we were substituting with, he went back to being violently ill.  I took him to the ER when he became ashen and extremely lethargic.  He was placed on a helicopter and sent back to the hospital out of state where his surgery had been performed.

The Moment of Hurt
When my husband and I got to the hospital in Louisiana, the ER doctor was waiting for us.  She was young, pretty, and scowling at us.  She looked me in the eye and asked, 

"Have you been feeding your child?"  
Her tone was accusatory. 

Time seemed to stop. The hurt in my heart was immediate.  
Part of me raged. Part of me wanted to verbally, if not physically attack her. If every ounce of strength in my body had not been devoted to pumping, healing my body, worrying constantly, and loving my baby, I would have managed something other a low and weak "yes."  

After my answer, I walked away from her and my usual defense mechanism took hold. I went numb. I went into survival mode, where my emotions become stunted and all processes become automatic. 

Within a few days, it was discovered that Trent had reducing substances in his stool, which led to a diagnosis of Malabsorption Syndrome. The diagnosis cleared any suspicions that I had been starving my precious baby.  He was placed on an Amino Acid formula and he began healing and growing. 

That young, pretty, scowling doctor?

To her, I would like to say:

I know you have seen horrors in the course of your job. 
I know there are parents who are capable of starving their child, especially a child with a lifelong diagnosis. 
I know Trent's condition looked suspicious when he arrived.
I know that you weren't aware that my incision was infected, or that I was so obsessed with giving Trent breast milk that when my supply took a dive for a week, I "massaged" my breasts so hard that I left bruise marks on them.  
You weren't aware that I wept when I pumped but only a produced a few ounces.  
You did not know that my dear husband encouraged me to skip pumping sessions at night so that I could get more sleep, but I refused for fear of losing my supply. 
You did not know that my husband gently swabbed my incision several times a day with iodine as the worry etched his face with deep lines. 
You certainly did not that he and I were falling in love with each other all over again because we were going through hell together, and that we found our strongest faith and comfort in each other. 

There was no way you could have known that if Trent died, I feared I would die along with him. 

There was only one thing you could, and should have, known:
Your question, with the accusation of it so clear, had the ability to cut me to the core.  

You should have known that no matter how many people praised me for what they saw as courage; no matter how many people told me they admired me, your words had the power to break all of that in one moment of hurt.  

I wish you had held your tongue until the tests had been ran. 

I wish you had considered for one damn moment that if I was the kind of mother that loved her child with all her heart and burned with the desire for him to live and thrive, your words would be poison to everything inside of me.  

I wish you had checked up on his case a few days later and came to our room. 
I didn't want or need an apology (though it would have been nice), but I craved validation. 

You could have said,  "I'm glad the Malabsorption Syndrome was discovered in time and he is now recovering." 

That would have been enough and I would have forgiven you.  

But you didn't.  I never saw you again. 

Every so often, I remember that moment.  I feel rage,
then I feel hurt.