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.