Tuesday, August 9, 2011

Soap Box

I'm bugged. I feel like a can of worms got opened today and I'm really bugged. The Special Olympics blog page released an article about Universal Pictures' continued use of terms of bigotry in the recent film, "The Change Up" where Ryan Reynold's character asks Jason Bateman's character if his young twins were “retarded” because they weren’t speaking, and then quipped “I don’t know, this one looks a little Downsy.”. (Just one year ago, the studio was blasted for using the word "gay" as a derogatory term in the trailer and film, "The Dilemma" with Vince Vaughn.) Click here to read the article: http://specialolympicsblog.wordpress.com/2011/08/09/universal-pictures-thinks-biggotry-is-acceptable-and-marketable/   

This brings up a lot of feelings for me, because just after giving birth to Elijah, I was vulnerable, worried and assailed by ridiculous language used by the NICU nurses at the hospital. These were NICU nurses who said that they worked with many children with Down syndrome.  Actually...they didn't say that- they said, "I work with Downsies all the time."  "We love the Downsy babies."  Or, some whispered the word Down syndrome...or actually avoided saying it at all.  Think about it, putting some weird adjective in front of the word baby, kinda makes it like it's not a baby at all. Like these human beings are some sort of...Chia Pet. I actually had to remind myself (with much relief and peace) that I did, in fact, give birth to a human baby boy. I was far too hormonal, shocked, and worried during Elijah's short NICU stay at the hospital to even begin to know what to say.  After some tears of frustration this morning, I've decided to do something about it. I've decided that it would be easy to say too much time has passed. I should forget about it.  The reality is that there are women who will go through the birth of a new baby with Down syndrome for years to come.  If...and it is a big IF...I can make even the smallest impact on one hospital nursing staff, maybe...maybe...I can make one woman's experience a little better than my own. It's worth that shot.

Dear Senior Vice President and Chief Nurse Executive (name withheld on blog),
      I had the pleasure of meeting you over one year ago, when my baby boy, Elijah (who is diagnosed with Down syndrome) was born at (Unnamed) Hospital. The fact that you took time out of your day to say hello and to tell me about the fact that you have an adult son with Down syndrome, meant more to me than words can accurately express.  You were one light amidst an experience that was fraught with insensitive, ignorant language and actions. I was so shocked, worried, and hormonal at the time of my stay at the hospital that I could not even begin to consider addressing some of my experiences.  Now that more than a year has passed, it would be easy for me to tell myself to "Forget about it- too much time has passed."  Instead, I want to share with you a few of my experiences in hopes that they will be shared and potentially give another new mother, down the line, a more positive and supportive experience.
    I want to start by saying that, overall, I found the nursing staff to be a very caring and considerate group.  It is for this reason that I want to highlight some of the language they used that unfortunately made my experience more difficult.  Due to the amount of time that has passed, I do not remember the names of the specific nurses, despite the fact that their words are emblazoned on my brain. My goal is not to create problems for specific nurses, but instead to enlighten how their word and action choices affect new Moms.
    I received a prenatal diagnosis of Down syndrome, so when I was admitted into the hospital to give birth all of the nursing staff had been informed of my baby's diagnosis.  The moment Elijah was born, he was taken into the corner to be evaluated. (No moment of being placed on my chest or belly, as I'd had experienced with my first born son- also delivered at (Unnamed) Hospital.) When my Mom, who had been in the delivery room, walked over to see Elijah as the nurses checked him out, they started whispering as soon as she approached.  My Mom said, "It's okay. We know he has Down syndrome. You don't have to whisper."  While Elijah's Apgar score came in at a good number, his oxygen saturation was low and so they did need to take him to the NICU. I had a moment to hold my beautiful son before he was whisked away.  An hour later when I walked over to the NICU to see my son (Thank you, natural delivery--quick recovery!!), I met one of the nurses who refused to utter the words Down syndrome. Instead, it was things like "Babies like this", "Babies with this condition".  Honestly, it made me feel a bit like they were acting as though my son wasn't even human. That he was a "condition" alone.  The next nurse on staff talked to me about how she's "worked with many Downsies. And loves Downsy babies." This also felt like she was describing some sort of breed of puppy and not my beautiful baby boy. My stay was only a couple of days, and my son's stay was only one week long.  Since then, I've gotten over the shock of people putting my son's condition before who he is as a child.  Whenever it's appropriate, I try to encourage them to see him as a child first.  A child who happens to have Down syndrome.
   My hope is that my letter is used not to reprimand, but instead to educate your staff about the power of People First Language. I don't think it's about making words off limits.  It's about putting a person (even a baby) first. To describe a person by the diagnosis first and foremost is de-humanizing. While there is only 1 baby born with  Down syndrome out of 742 live births, and the occurrence is somewhat uncommon at (Unnamed) Hospital, the idea is the same for any diagnosis.  I'm sure the nursing staff in an oncology department need to be reminded now and again that although they are helping to treat cancer- it is a person with whom they are dealing, first and foremost.
     I felt comfortable in sharing my thoughts with you, not only because of your position at the hospital, but also because of your position as a Mother.  I wish you and your family the best and hope that you will consider sharing my thoughts with those that could make a difference in the quality of a patient's care.
Very Sincerely,
Jennifer Currier

P.S. Here is a picture of my son, Elijah- now 15 months old.  He loves music, smiling, laughing, bath time, and books.  He is not as fond of sand in his mouth, being left alone, and when his older brother teases him with toys. :) He is a joy and a blessing to our family.


I'm grateful to have this blog as a place to work out these feelings.  Frankly, I don't feel comfortable or safe to actually talk about it with many people in my life.  Eyes have been rolled, inside "jokes" shared, and silence has been heard. Therefore trust has been lost. I don't really know who reads this blog or whether any of my rantings, inspirations or plans mean jack squat to anyone.  I have a stat bar that shows me that people come across my blog.  I get a comment or two here and there (usually from the people who have a child with Ds and understand the need to feel supported), but most people just stay silent. I understand that many people don't know what to say. This is not a blog about gardening. It's about my feelings and it is actually nice to have someone say, I hear you. I don't know if this letter I've drafted will get immediately tossed in the trash, or if it will be brought up at the next nurses staff meeting, but I think I had to write it to let the old demons go.  The demons that I wasn't fully aware of until today (while gardening--Who knew?). I was reliving and weepy about what my experience was that first week of Elijah's life.  I haven't sent the letter yet.  If you think there is anything I should add, delete or re-word, I am very open to suggestion.  My goal is to send a letter that explains how I was affected without coming across as reprimanding or bitchy. I know my tone of voice, but since it is a letter, the receiver will not.  Your thoughts would be appreciated. 


heather said...

I think the letter is absolutely perfect! And I love that you're including a recent picture abd his likes and dislikes. This letter needs to be shared with the staff at all of the labor & delivery, postpartum and nicu facilities around the country! Love that you took the time to write it and make a difference instead of just remaining angry and nothing changing!

Runningmama said...

I love this letter, it's such a good idea to let the hospital know about your experience so that maybe someone else won't have to live through it like you did. My birth experience was terrible at the hospital where I had Emily, we didn't have a diagnosis beforehand and the social worker came in and just said...here's the name of our early intervention team, but I hope you won't need it and that was it. Maybe I should write a letter...you've given me something to think about...

Unknown said...

Jen, I think your letter is very well written, thoughtful and tactful. I admire your ability to be true to yourself and find a constructive outlet for your feelings. You are supported, Girl!

Unknown said...

That last comment was from me, Paris Wages. Sorry it came up as "unknown"!!

Jenny said...

Perfect!! This was just perfect! Everything was so well said...I have felt and said many of the very things you wrote about in here. I do not like people referring to my son as a "downs" no matter how kindly they say it! And if we as parents don't try to correct people and how they speak of our children, who will?
Loved this post! And good for you for writing that letter! Every little bit counts in making changes in this world for our children :)

thea said...

I hear you....Love every word. So glad you're sending this.

Elaine said...

Beautifully said -- both the letter and the blog. Your tone is respectful and direct, and my hope is that it would be shared with the entire nursing staff.

Kristen said...

I think your letter is perfect! I hope you will send it.

You have beautiful sons!

Carolyn Turner said...

Hi- I was told about your blog by Gillian. Our littlest girl is 3 weeks old. Her diagnosis of Down syndrome was not completly unexpected but still a shock. I think I am still is shock; it is nice to know that my feelings are not unique. Thanks for sharing!

katjameson said...

Wow. The nursing staff you encountered must have been absent the day they taught compassion and open mindedness in school. Because they do teach that in nursing school. That as a professional you must treat all patients equally and do the best you can on a case by case basis while meeting the patient's specific needs. Elijah having down syndrome is only relevant if his care was different because of it and should have been addressed as such. ie, "Because of his down syndrome, Elijah is experiencing this difficulty where a baby without downs would not", etc.
That's it, seriously. I'm sorry that this was your experience, Jen, and feel free to email me if you'd like. I promise not to snigger. As a former L&D RN I'm sorry that this was your experience. Having a new baby produces anxiety even while it's a joy but to have him in the NICU is beyond that. They should have been more sensitive to you as a new mom. Truly.

katjameson said...
This comment has been removed by the author.
Jessica said...

I'm so sorry Jen, this stuff drives me nuts too. It is funny but I had the exact same experience with our NICU nurses but for completely different reasons. After we lost one of our triplets they immediately starting calling my surviving children "twins" which made me feel like they forgot my other daughter had even existed and were just generally insensitive to the whole situation. I'm not sure why some people don't think before they speak or make light of our situations but I wish things would change and I applaud you for taking steps to make it happen. I need to do it for our NICU too but it is still too emotional for me to go there.

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