Stop Using the "r" Word

Today’s the sixth annual Spread the Word to End the Word Day, a day devoted to raising awareness about why we as a society must stop using the word “retard” which perpetuates negative stereotypes of people with intellectual disabilities.  The campaign was stated by the Special Olympics with the goal of not only eradicating the use of such an insulting word but to raise awareness about why everyone is entitled to consideration and respect.

For as long as I can remember I have been offended when people use the term “retard”.  As a young professional, I had the honor to staff the Will County Advisory Committee of Disabilities a group formed by Will County Executive Larry Walsh to work with persons with disabilities in the County of Will to not only hear about the group concerns but to find solutions. This group was responsible for helping to identify commonsense solutions that would bring county buildings into compliance with the ADA—I remember when I approached the committee about the county’s intention of making all county buildings ADA compliant, one of the committee members explained, “Let’s make sure that when making the buildings ADA compliant we don’t make them inaccessible for the persons with disabilities who use the buildings.  As a committee we would like to make suggestions that would make the buildings more accessible and will likely be more cost effective.”  The members of this committee had a range of disabilities some physical, some intellectual but they were all extremely passionate, thoughtful, and community minded individuals. So whenever I heard the term “retard”, I would think about these individuals and I remember wondering if someone could still use the “r” word after meeting the meet likes of Bang Long, Jr. or Pam Heavens both passionate advocates in the County of Will.

Fast forward to the birth of Caroline—from birth she was medically involved and developmental delayed—for a long time one of my biggest missions was to find out was it a delay or a disability.  At first, I was very sensitive about Caroline’s delay but I didn’t know how to express it.  I remember sitting at the dinner table, at the home of some extended family, getting ready for a holiday meal with Caroline sitting in my lap and hearing, “He is acting like such a retard,” and many similar comments throughout the course of the meal.  Caroline was sitting directly across the table as this family member, who was well aware of Caroline’s challenges, dropped the “r” word like it was nothing.  I became extremely quiet for the rest of the trip.  We were guests in his home, I was not sure it was appropriate to address my anger.  But in business meetings, on neutral ground, I have responded to the use of the “r” word by explaining I not only find that word offensive but hurtful as I have a daughter with special needs. For a long time, I felt this was a battle I was fighting alone. I think that is I why I was so overwhelmed when I learned about the Spread the Word to End the Word Day campaign, an organized effort to not only end the use of the “r” word but to raise awareness about why everyone is entitled to respect and consideration—I now know I am not fighting this battle alone.

10 Reasons Why Kids like Caroline Deserve Your Respect

and why you shouldn’t use the “r” word 

1. Because she is a kid. She may act differently, walk differently or think differently than most children do but at heart is a child like any other. She matters. She has worth. She has potential.                                                                                                                     #1 was borrowed from Ellen Seidman who writes the Love that Max Blog because she said it so perfectly.   


2. Because in addition to Caroline having an intellectual disability she is medically involved—she is a fighter, she is strong, and she is amazing.  She has been through more in her short life than most adults—don’t diminish what you do not understand.


3. Because Caroline is able to find joy in almost any situation. In other words, despite her challenges she has accomplished more   in her life than I have—as I have yet to learn how to find joy like my daughter


4. Because Caroline can understand you. She may not be able to speak to you but she understands and she has feelings—respect them as you would your feelings or the feelings of your child respected. 


5.  Because as a mom of a special needs child who is medically involved, I fight enough battles with the insurance company,              providers, schools, and just about everyone else—don’t make use my skills on you. 


6. Because Caroline deserves more than to be tolerated—she has so much to offer this world. Those who can see past her disability to her abilities are lucky enough to experience those gifts. 


7. Because Caroline has a wicked sense of humor.  She is nonverbal but she messes with people on a regular basis—know that you can tease her and joke with her just don’t hit her below the proverbial belt. 


8. Because at the end of the day why would use a word that is hurtful to so many and demonstrates your ignorance and intolerance. 


9. Because we need to remember the golden rule: Treat others how you would like to be treated. 


10. And because how could you use a word that is hurtful and derogatory to this face 

[caption id="" align="alignnone" width="378"] Caroline asking you to mindful of your word choice because it matter to her.[/caption]

Different, not less. 

Stop the Abuse

 In the last few days, I have read about two separate incidents of teachers abusing kids on the spectrum.  A special education teacher in Florida was arrested when two teacher aides reported that they witnessed the teacher strike a student.  And in Michigan a teacher is fighting for her job after taunting a student with Asperger’s who got himself caught in a chair—because of her inaction the student remained stuck for 10-15 minutes during which time the teacher verbally taunted the student who was in tears. No parent would want their child subject to this type of treatment. And sadly, parents at the school are defending the teacher and her actions. 

[caption id="" align="alignleft" width="218"] Caroline's studious side--she likes to dress the part.[/caption]

I don’t know this teacher but after watching this video, I know she made some very bad choices and I would not want her working with my daughter. I would also question whether I would want to raise my daughter in a community that would rally behind the unacceptable, abusive actions of this teacher.  To me when these parents chose to defend the actions of this teacher they were not only demonstrating their ignorance but also their intolerance for those who are different. When I talked to my husband, a professional educator, about this he looked at differently.  He felt that the parents were reacting based on their limited experience with the teacher—who may be a good special education teacher 95% of the time. In his opinion the issue is that we cannot accept a special education teacher who plays favorites or fails in their job 5% of the time, especially when the failure is at this magnitude.  My husband’s thoughts                                    have a certain logic to them; they also demonstrate why he is such an effective educator and administrator (and one of the many reasons why I love him).  

School is the nexus of most social interactions for kids with disabilities just as it is for typically developing kids. Imagine what the kids in the classroom in Michigan learned when they watched their teacher torment their classmate with special needs and then their parents defended her behavior. My guess is they learned it is okay to not only ignore the students who are different than them but to torment and bully them without consequence.

Caroline is still so young. We have been really lucky that she has not excluded from too many activities because of her diagnosis. And to my knowledge she has been subject to minimal bullying—kids pushing her down on the playground and others trying to scare her.   However, I have also read countless blogs and articles about how lonely and isolating it is being a kid growing up on the spectrum—recent documented examples include kids not wanting to wear friendship bracelets given to them by a child with special needs or many instances of kids on the spectrum not getting invited to birthday parties or no one coming to their party.  And then there was this blog that I read months ago—I can’t find it now—but essentially the author talks about how she sat in the audience at back to school night as the principal of the school encouraged kids of students with special needs to make sure to plan “extra fun” parties so the “normal” kids would want to attend. 

In my eyes, Caroline is the life of every party but I can understand why some people may have reservations about having her around.  It is stressful spending a lot of time with a child with special needs and if you have limited or no experience with autism some of the unexpected behaviors may be unsettling.  But people who willingly enter a profession working with kids with special needs need to be held to a higher standard and if they are getting overwhelmed, need to have access to an establish protocol to remove themselves from the situation. And furthermore we should want special educators and administrators to raise the expectations of other teachers and students by celebrating the successes of kids on the spectrum. The impact of a teacher bullying or tormenting a student with special needs not only has tragic consequences for the student with special needs but for all their typical peers. As a society we need to demand more and not accept any less.

Different, not less.  

Vivian's Break From Caroline

It is funny how spending time with my family reminds me of who I am and why. For better or worse my shared history with my family allows them a unique insight into who I am.  This weekend, I extended a business trip—and brought Vivian along—so we could spend the weekend with my family in Arizona.  Not only was this time wonderful for me but for Vivian as well.

I brought Vivian with me on a trip to Arizona about the same time last year.  I didn't realize how much that trip had meant to her until she began recalling details from the trip the other day—my now 4 year old recalling very specific details of a trip that happened nearly a year ago.  I have come to realize that these trips to Arizona are so important to Vivian for a variety of reasons including she gets some alone time with me, and with her grandparents but perhaps most importantly with her cousins.  Coming to Arizona allows Vivian the opportunity to spend a couple days having a constant playmate—her cousin, Trinity who is only six months younger than Vivian—who does not have special needs.  Vivian and Trinity play like sisters—they talk, sing, dance, play with dolls, fight, and start the cycle all over again.

[caption id="" align="alignright" width="455"] Trinity and Vivian strike a pose in their gymnastics leotards.[/caption]

I remember how much I loved spending times with my cousins growing-up and still today. But I think Vivian’s relationship with her cousins is even more important given the dynamic of her relationship with Caroline.  Not only does Vivian realize that Caroline is different but she also assumes a lot of responsibility to help Caroline with various tasks. Vivian makes a huge effort to play with Caroline and more times than not Caroline chooses not to engage with Vivian.  For the most part Vivian takes this rejection well but it must be frustrating for her. And even when the ladies are able to engage in an activity together it pretty much needs to be on Caroline’s terms.  Being Caroline’s sister can be a bit overwhelming.  I don’t think Vivian thinks about her relationship with Caroline this way but I definitely see how Vivian’s interactions with her peers are impacted by how she needs to interact with Caroline. 

We, as parents, make a major effort to offer Vivian opportunities to interact with a variety of kids but at the end of the day, Caroline is always going to be Vivian’s most frequent playmate.  Trips like this one offer Vivian a nice “break” and the opportunity to have a constant playmate who is not as high maintenance as Caroline. 

I Am a Single Parent

As of 4:30 AM, last Tuesday, I am a single parent.  No, John did not tire of my antics rather he accepted a job that requires him to work/live in Houston (3.5 hours from our home) during the week for a few months.  I have learned some valuable lessons during my time as a single parent.

[caption id="" align="alignright" width="390"] Kristen and Caroline soaking up some sun. Photo Credit: Kristen[/caption]

First, I am extremely lucky to have the help of our nanny-extraordinaire, Kristen, who did not bat an eye when we told her of the new living arrangement and also that there, would be times when we would need overnight help.  Kristen loves our ladies like they are her own and she understands how to meet them where they are—which is so important.  Kristen also coordinates the ladies’ schedules during the day which is no small task—if Caroline has a doctor’s appointment that may mean rescheduling up to 4 standing appointments.  I am not sure our family would “work” without Kristen. 

Second, I learned that I am extremely lucky to have met such wonderful people in San Antonio.  When I told our friends about our new living arrangement they very eagerly offered assistance.  In San Antonio I not only feel like I am part of the community but that there is community around me.     

And finally, I realized that not everything is going to get done—even with the help of Kristen and friends.  There just are not enough hours in the day.  Thus I have decided to grant myself dispensation.  If the house is messy so be it. Caroline might not get as much structured time with me but she will be safe. Vivian is willing to step and do her share by watching more television. And I will not be logging back in to work every night, after I put the ladies to bed.  I hope that during this time as a single parent I will be able to spend more quality time with the ladies by allowing myself not to worry (read: obsess) about the mundane.

In our seemingly endless quest for stability and security we, the Buzzard family, find ourselves once again, living on the edge.  John and I have decided that the time has come for us, as a family, to put down some roots.  And although, we have to move from our current house by the end of April—we have decided that our move will be a small one within the confines of San Antonio.  We have fabulous friends, Caroline has wonderful therapists, Vivian loves cowboy boots and we are thriving here as a family. I feel very confident about our future. So although, I will be playing the part of a single parent for the near term I am excited about our future in San Antonio, a city on the rise.  

She Is Not Deaf

My daughter is joyful, jovial, sweet and crazy smart.  She is also a nonverbal sensory seeker who flaps her arms and screams uncontrollably when she becomes excited or frustrated.  Caroline is autistic; she is not deaf and she is not without feelings.

 I am Caroline's mother, caretaker and biggest advocate.  I am not deaf and I am not without feelings.

On more than one occasion a seemingly typical but curious adult has asked—within hearing distance of Caroline—What is wrong with her.  My visceral response: "Nothing is wrong with her but I question your upbringing and manners.  And to be clear when I say nothing is wrong with Caroline, I meant there was nothing wrong with her before she heard a total stranger ask: What is wrong with her."

Different, not less. 

My Medically Involved Daughter Is Not Trampling Your Pursuit of Happiness

“Two things that happened in 2012. We had two AOL-ers that had distressed babies that were born that we paid a million dollars each to make sure those babies were OK in general. And those are the things that add up into our benefits cost. So when we had the final decision about what benefits to cut because of the increased healthcare costs, we made the decision, and I made the decision, to basically change the 401(k) plan.”

Tim Armstrong, CEO of AOL

The actions of AOL under the leadership of Tim Armstrong are extremely disappointing and epitomize not only the current state of corporate greed but also that of the wealthiest 1%.  Mr. Armstrong makes $12,000,000 annually; however, he cited the $2,000,000 of medical expenses incurred by two newborn babies as the strain on AOL’s resources necessitating changes to employee benefits rather that his own compensation.

Deanna Fei, the mother of one of the “distressed babies” wrote a blog in response to Mr. Armstrong’s comments during which she eloquently spoke to the harm of  Mr. Armstrong’s greed ridden comments, “Our daughter has already overcome more setbacks than most of us have endured in the span of our lives. Having her very existence used as a scapegoat for cutting corporate benefits was one indignity too many.”

I cannot agree more with Ms. Fea’s comments that express her frustration and dismay that Mr. Armstrong felt it appropriate to not only lay blame for changing AOL benefits on the Fea’s newborn born daughter but also the insinuation that it was the Fea family who was greedy rather than Mr. Armstrong:

“Let’s set aside the fact that Armstrong—who took home $12 million in pay in 2012—felt the need to announce a cut in employee benefits on the very day that he touted the best quarterly earnings in years. For me and my husband—who have been genuinely grateful for AOL’s benefits, which are actually quite generous—the hardest thing to bear has been the whiff of judgment in Armstrong's statement, as if we selfishly gobbled up an obscenely large slice of the collective health care pie.”

Deanna Fea

[caption id="attachment_1212" align="alignleft" width="239"] Caroline, my distressed baby, shortly after being released from the hospital.[/caption]

The physical, emotional, and financial toll of giving birth to a “distressed baby” is great.  Our lives were forever changed by Caroline’s entry into the world.  The medical bills, lack of sleep, and endless medical appointments were overwhelming. We had to figure out how to close the substantial gap between insurance and the medically necessary care that Caroline required. I cannot begin to imagine what it would feel like if the medical care Caroline received was cited as a reason my employer chose to change our benefits package. Especially since one of the benefits of employer-sponsored healthcare is that there are lower premiums when all employees (not just the sickest employees) secure benefits…meaning that by creating a large pool of insured the risk is shared among many so when the unexpected happens—giving birth to a “distressed baby”—the burden of the cost is shared.

I also find it interesting that employer-sponsored health insurance was offered as a way to entice potential employees when the federal government instituted wage controls during World War II.  Essentially, fringe benefits like sick days, health insurance, and the like were not considered compensation so they were in affect a loophole that allowed employers to skirt wage controls. Fast forward to today as healthcare premiums are rising quickly many employers are doing everything they can to reduce healthcare benefits. Both commonsense and research dictate that access to healthcare insurance leads to less time off of work just as increased access to sick and vacation time increases employee productivity and engagement. But for some reason, most employers are not willing to learn from the examples of the few responsible employers who have managed to be very profitable yet provide employees with access to benefits that increase productivity, loyalty, and employee satisfaction—Google, SAS (Statistical Analysis Systems), and the Boston Consulting Group  to name a few.

To be fair, AOL and Mr. Armstrong are not the only examples of corporate greed trampling not only the livelihood but potentially the lives of the medically fragile members of the workforce (and their family members)—who are the backbone of industry and progress in America—they are simply the most recent example.  It is my hope that as a collective we will demand that corporate America treat those who keep America running with the respect and dignity we so rightfully deserve and in doing so allow the American workforce the ability to pursue their happiness or version of the American dream.

And to Ms. Fea thank you for speaking up and sharing your story.

Missing Brit: 6 Years

[caption id="" align="alignleft" width="223"] Brit snuggled with her baby blanket. This picture was taken the summer before she passed away, when she came to visit me in Northern Virginia as part of the celebration of her 9th birthday.[/caption]

It has been six years since that painful night when I held Brit’s hand as she left this world.  When I remember that night, I think about how her baby blanket was nestled close to her face as it was almost every time she slept. That image of Brit—with her baby blanket on her death bed—is an image that both comforts and haunts me. It is always unsettling to lose someone you love but particularly so when she slept with baby blanket.

For those who want to know more about Brit's medical battle, see here.

The flashbacks from that night are vivid and real, I can almost touch them. I remember the moment; I realized I would never speak to Brit again. I was standing in her PICU room, after she just had just been connected to ECMO, think heart and lung machine.  One of the nurses looked very concerned.  I asked her what was wrong.  She explained that even though she was pushing fluids, Brit’s blood pressure was not increasing.  At that moment, I knew.  I knew everything, I feared since I got the phone call from my mom telling me that Brit had an infection in her brain that required immediate surgery was about to come true.  I was overcome with waves of emotion that included immense sadness, sorrow, and relief. Yes, relief. It was excruciating to watch Brit experience so much pain and being so scared—so I felt relief, relief that Brit was at peace and would no longer have to endure the torture of inconclusive medical tests and medical procedures that in the end proved to be ineffective.

Over the years, the images have changed.  I am thankful the image of Brit seizing on full life support is one that does not enter my mind as frequently as it once did. When I think back to the days following Brit’s death I am more often reminded of family, friends, colleagues, and strangers who offered support to me and my family during our darkest hour.  I rarely think about having to track down Brit’s body as the hospital was slow in releasing her remains to the undertaker. I don’t think about how painful it was to write her obituary, the program for her funeral, and her eulogy but rather I remember that when I sent the order to Office Depot to be printed the manager not only printed the programs for free but created a beautiful poster of Brit that still hangs in my parents’ house today.

I still miss Brit every day. But I am now in a place where I allow myself to takes breaks from the pain of missing her and for brief moments relish the joy she brought to my life.

I still feel an immense responsibility to keep Brit’s memory alive.  I still talk about her and appreciate when others bring up her name because it means they remember.

So today, on the sixth anniversary of Brit’s passing I encourage all who knew her to share a story about her, to remember her, and to be thankful for all that she brought to this world.  As for me, I will share clips from the memorial video that played during her wake—a picture is worth a thousand words. Here are some tidbits as to why Brit was so special.

My favorite exchange with Brit:

Me: I am going to tell you a secret, you are my favorite.

Brit: I am everybody’s favorite.

In loving memory of Britney Nicole Wielgus, Aug. 6, 1998-Feb. 9, 2008, a life that was cut far too short.