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:  www.r-word.org.

Angrily and fed up,

Holly Fedele

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.  

Trenter Trenter Chicken Dinner

March 21st is World Down Syndrome Day.  

Why?  

Because 3/21 symbolizes the three chromosomes on the 21st chromosome. 

I usually celebrate with Blue and Yellow cupcakes brought to Trent's class, blue and yellow bracelets on my wrist, and lots of Facebook posting. I make memes.

This year, the International Down Syndrome Coalition (IDSC), a grass-roots non-profit group, has challenged bloggers to tell people about our loved ones with Down syndrome.  This is an easy challenge for me, as I love talking about Trent.  At the end of this post, please watch the video created by IDSC.

Trent-Man, Silly Boy, Mr. Trent

Stink Butt, Sunshine, My Big Boy

 Trenter Trenter Chicken Dinner

Those are the names you will hear in this house applied to Trent.  His nicknames.  

But Trent is so much more than just a chicken dinner.

Trent is a son.

He is a brother to two siblings.

He is a nephew to many aunts and uncles.

He is a grandchild.  

He is a best friend..."Heyyyy Mimmy"  (Hey Timmy.)

He is a dancer....to most anything. 

He is a lip syncer...mostly hip hop. 

He is a hugger....tightly and frequently. 

He is a kisser...puckered and on the lips to perfect strangers. 

He is a football player....just say "down, set, hut" and watch what he can do. Or throw the football back and forth with him.

He is a clothes folder...quite well....snapping the wrinkles out.  He attempts to put all the folded clothes in the towel closet in the hall.

He is his accomplishments and his delays.

He is a Special Olympics Young Athlete.  

He is the stereotypical child with Down syndrome, as in almost always happy, eager to please, easy to parent.

He is a little pig when eating...which is amazing considering the sensory issues he used to have.

He is the baby I couldn't hold for days after his birth.

He is a fitful sleeper...kicking, covering and uncovering, sitting up and crashing down.  

He is a student...and soon to be kindergartener.

He is a runner.

He is a teacher.

He is a survivor of PPHN, a VSD,  an ASD, a PDA, failure to thrive, and malabsorption syndrome.

He is the center of attention...loving the spotlight.

He is the soft-hearted child that cries when other children cry.

He is a thumb-sucker.

He is the blessing I never knew I wanted or needed.

He is Down syndrome...not in the politically incorrect way of saying it....but in the way that he would not be the same child if he didn't have Down syndrome.  

Which is why I celebrate Down syndrome, not just on World Down Syndrome Day, but every day.  

It is my son...my incredible, beautiful, funny, loving son.  

Great Expectations?

Since Trent's birth, I've worried about him.  More so than my other kids.  His diagnosis makes it impossible not to worry.

I worry about normal things, and I worry about silly things.

When he was a mere two years old, I worried for months about his future job aspects.  So I told myself that I would treat him no different than my other kids, but....

If my other kids spend the rest of their lives bagging groceries, I would consider that too little ambition.  

It would not be okay.  

So then I freaked out.  Is it okay for Trent to bag groceries for the rest of his life?  

Should I expect more for him just like the other kids?  Or, when and if the time comes, do I accept that bagging groceries makes him happy and is the best he can do?

Oh, the headaches and tears these thoughts brought me.  

And he was only two years old!

Really, the "future job" worry is just a larger scale of thoughts that nag me.  How do I balance my expectations for Trent? 

For example, his speech will likely always be unclear.  Do we continue with therapy indefinitely or do I accept a plateau?  

As his mom, do I know when we have reached a plateau? 

Or do I expect the therapist to tell me?  

Where do I draw the line between helping him reach achievements and trying to make him perfect/"normal"?  Is there a clear place, on the spectrum, that this imaginary line occurs?  

I have no answers.

Luckily for me, Trent makes it easy to take it day by day.  To just be his mom.  To rejoice in his achievements.  

(But I would still like answers.) 

Comparison and Contrast

 I’m a blog reader for two reasons.  

Reason one is to get simple distilled information about the Down syndrome, disability, and adoption communities.  

Reason two is because I find the person writing the blog interesting and I want to know more about their life.  

Two of my favorite blog writers are a good lesson in contrast.  

The first is a mother of 11 children. I do not know her religion exactly (definitely Christian in nature) but her faith draws me to her. It does not matter to me where she places her faith, simply that her faith is the most abundant I have ever seen. And she is a beautifully spiritual woman, almost otherworldly in her spirituality. I imagine how wonderful being her child must be, because she is so gentle and devoted to them.  Her greatest aspiration has always been to be a teaching mother of many.  I have read her writings long enough to know that she is very educated, complex, and extremely intuitive in areas of human nature and learning.  She can be found at theblessingofverity.com

The second of my favorite mom blogger is a mother of 7 children. And a loud atheist. She provides a warning to her readers that she is a non-believer, curses on her blog, and doesn’t allow bullshit. Again, I imagine how wonderful being her child must be, not because she curses (I doubt she curses much in front of her children) but because while she is also gentle and devoted, her house is alive with questions, answers, honesty, and freedom. Openness without guilt. Questions and answers without reprimand.  Her children's maturity and empathy in matters of school and friendships prove she is doing things right.  She can be found at lisamorguess.wordpress.com

I admire both of these women. I admire their personal truths. I admire their parenting skills.  Although I've called them a lesson in contrast, I can still see similarities in them.  Mostly love and devotion.  But also personal sacrifice.  Empathy. Sympathy.  And activism. The big difference of religion doesn't matter all that much in that respect.  All of those attributes exist within and without religion.  I think they probably even trump it.

                                                     

Another Chapter

So the woman has a new psychiatrist and a new therapist.  

The psychiatrist adds a very small blue pill to her regimen.  The therapist gives her homework.

It has been a few weeks for the blue pills.  The woman can smile again.  She sleeps more peacefully and can control her moods.  

Touch no longer makes her skin crawl.  

She can concentrate on command.  

No longer does she cry without meaning to.

  

Once the fog truly clears, she wants to tell people that Major Depressive Disorder is not something to "shake off."  

She is not unhappy with her life.  

The nature of MDD is that she could have the greatest life ever, but unbalanced chemicals in her brain would make it all mean nothing. 

 A broken brain has no concept of worth.  

That is why she fears it all so much. 

Mostly, she wants to tell people how well she is.  

She has walked through a level of hell, and she feels strong to have walked back out.  She is proud that she avoided being a statistic.  

So will it stay this way?  Will the medicine work forever?  

Who knows.  She certainly doesn't know. 

 The only thing she knows for sure that each moment of swimming instead of drowning is a moment to be celebrated.  

A Story of A Girl

This is the story of a girl with a diagnosis of Major Depressive Disorder.  She is actually a woman but when she is sick, she is just a scared little girl.

She has been on and off of medicine since she was 18 years old.  She should have been put on meds even earlier but alcohol, bad choices, and simple faking it sufficed before 18.  And society likely prevented it.   

Some meds have worked better than others, some worked for a long time then just stopped working.  Some meds required upping, upping, and upping until the amount was a balloon tapping the ceiling.   

The side effects blur with the disorder, and she can't always decide what is better.

The girl doesn’t like to admit when something has stopped working.  It is admitting that she will never be whole.  Forever broken, forever reaching for something not possible.  It is an exhausting thought.  Full of guilt.

Days or months can pass and she ignores signs.  The tears that fall randomly are allergies.  The twisty snake in her stomach is food poisoning. The damage done to her nails and cuticles are just an old habit and not a pleasurable, non-obvious way of hurting herself.  Anger is just a bad day.  A lack of sleep is just too much work, too much fun on FB, too much anything other than uncontrollable moods. Too much sleeping is just that she is tired.  

 She ignores the possibility that the disorder is making its final push of control.

 

She is ok one morning.  Relationships have suffered a bit, but she can proceed with the day.  Then something with someone else flips the switch of the dam.   

The disorder rushes in and is in control.

She knows she is hungry because she hasn’t eaten much.  She knows she wants something sweet because sweetness can sometimes produce a better mood, but when she gets to the parking lot and tries to push the button to order French Toast Sticks, her throat closes.  She is paranoid they will know the real thoughts floating around.  So she doesn’t order.  She watches cars drive by. 

Everything slows in her mind.  Every process in her body becomes heavy and cumbersome.   

Back before she was a mother, suicide was always an option.  

 But now, she has too much to live for, and she would never subject her kids to the loss of their mother.   

But the thought is like an insistent flirt of a person.  How would you?  Access to tools of suicide?  Change of mind at the last moment?   

She attempts to wave those thoughts away but they are heavy and slow, like waving a hand through syrup and looking for a change in movement.   

She heaves a door open to other thoughts, but they too are heavy.  They flow toward the front of her mind in a slow ticker fashion.  She sees a thought she might like but it moves so slowly along the ticker, it becomes unconnected and incorrect before she can fully grasp it.   

She wants it back but can't find it and that frightens her.   

She senses that she is near the edge of something and that all it will take is one tiny push to cross a line; the line when a person no longer knows their thoughts are not ok.   

It is the line a person crosses into psychosis.  

 She has crossed it once before.   

To tell the memory of crossing that line is a funny story, but the memory of terror produces more terror.

So she starts looking for phone numbers.  She sends a text to her therapist.  She says I can’t and won’t talk right now.  But I need to know what to do.  I need to know what happens if I go to the emergency room and tell them I’m losing my mind.  I’m not suicidal but I can’t promise you that the line isn’t nearby and that if I cross the line, I will forget all the reasons I don’t want to die. 

 It takes her an unreasonable amount of time to type that.  The thoughts are so slow and her hands are so heavy. 

 She waits.  And waits. 

She becomes disconnected and looks at herself objectively.  How can all these cars be going somewhere like nothing is wrong?  How does their world function when her world doesn’t?  Can’t they sense that she has become unmoored and is floating in a place not at all similar to the place they inhabit?  Doesn’t anyone see the little girl with a war in her brain sitting in a vehicle at a fast food joint?  How long has she been there?  (The clock on the dash says over an hour.)  But she is an adult woman with sunglasses on.  They don’t see that she moves in slow motion.  Or that behind the glasses, tears just run from her eyes like full cups of water being poured. 

No return text.  

 After an internal debate and slow motion of searching, dialing, and breathing, she attempts the number at the behavioral hospital.  The receptionist barely understands her through the sobs, but the receptionist has been trained.  

1. Get the person on the line with a counselor immediately.   

The counselor sounds like a young man.  He asks the girl if she is suicidal.  She says “no but I could be.”  She actually giggles at the statement because it doesn't convey what she meant to say.  Then she sobs harder because she knows inappropriate laughter is not good.  He asks her name, she refuses to answer.   

Just tell me if I will see a psychiatrist and if they will let me out when I am better, she says.  The counselor tries to avoid that answer.  He wants to know Better from what? What is wrong?  Why don't you just come here?  

She hangs up because she knows she could never make the decision to drive there anyway.  She will never find the energy to leave this parking space.  She thinks about crawling into the back seat and going to sleep.

But new thoughts come.  What would her family think?  Demon possessed is one thought.  Literally, that a demon has taken up residence inside of her and is doing this too her.  She thinks about praying and tries it, but nothing happens.  She knows too much about genetics, family history, chemicals in the brain, and mental illness.  The sickness is not, nor has ever been, a demon.

 What would her friends think?  Would they be scared to be her friend if she spent the night in a hospital created for "people like her?"  Her children?  Her husband?  Her job?  Her future?  Would even one night ruin her chances of a career or choosing a child from another country later?  She senses that she is being overly paranoid but she no longer trusts her perception of truth. 

A text comes and it isn’t her therapist.  It is someone that loves her very much.  He thinks she is somewhere else.  She doesn’t tell him that she has been parked for 2 hours. That the war has been going on for 2 hours.  She tells him she does not want to talk but will text.  She tells him that she has been asked if she is suicidal, that she is not but that she is not OK either.  She tells him that she doesn't know where the line is or how close she is to it.  She tells him she doesn't want to cross it.  His texts calm her.  She is being as honest as she can.  She tells him that she worries she will lose her children because she is sick.  Even if people have come so far to accept those with mental illness, it doesn’t mean she will be accepted.  This is a huge failure on her.  He wants health for her at any cost.  

Just go to the hospital if it will mean health. 

She doesn’t respond.  She puts her phone away.  

 She finds that although her eyes continue to cry, she can speak.  She orders food.  She pays for the food.  She eats a little bit.  She stops thinking for several minutes.  

The wind flutters leaves on a tree.  She stops choosing to eat or not choosing to eat.  The body becomes automatic.  Hand in bag, fingers grab food, arm moves food to mouth, mouth chews, swallow, repeat.   

It is a form of hypnosis she learned years ago.  It provides protection when it is needed the most.   

The thoughts return to normal speed.  The heaviness in movement lightens.  The wave of syrupy thoughts thin out.   

When she comes out of the hypnosis, she doesn’t feel so much of a little girl, but she is so very sleepy.

Although it has been at least a month since she has driven a stick shift, she mistakenly thinks her vehicle is one.  She tries to put the vehicle in reverse with her left foot pushing a clutch.  She is momentarily confused and worries she will not be able to drive.  

(Later, she will assume that the confusion was from her past.  During the years of the most severe episodes, she owned a stick shift.  The body has a memory of its own.) 

She makes it home and walks straight to the bedroom, only stopping to remove her shoes.  She no longer weeps but the tears still flow with no help or avoidance from her.  She falls asleep with heavy blankets to ease the coldness in her bones.   

Four hours later, she wakes to find her eyes almost swollen shut and crusty with salt.  She feels as though she has been in a car accident, sore and weak. The tears still flow even when she makes an effort to stop them so she returns to bed a few hours later.   

The morning reveals improvements, both in emotional and physical ailments for the woman.  And Monday will be an important day for making phone calls. Maybe it is time for a new medicine.  Maybe a new treatment.  
She won't give up hope. 

September 9-15^th was Suicide Prevention Week.