Thursday, August 22, 2013

A Fine Line

People often ask me if I get annoyed being asked about Ella all the time.  In complete and utter honesty…no.  Most of the time it really doesn’t bother me that people ask about Ella.  I’m not oblivious to the fact that she looks different than typical children.  I’m well aware that when others see her they don’t see your every day, run of the mill 6 year old child.

I feel incredibly fortunate to live where we do.  Washington, DC is a vast quilt.  We live in a melting pot for every kind of culture, religion, ability, age, artistic expression, attire, and the list goes on.  Being “different” in DC isn’t nearly as out of the ordinary as it is in other parts of the country.  That said, while we are surrounded by hundreds of thousands of people, our neighborhood is quite small.  I often joke that everything we need is within a 3 mile radius of our house.  I always shop at the same grocery store, which means that most of the cashiers have seen Ella numerous times.  We have gone to the same pediatrician since she was born.  We have used the same pharmacy since she was born.  Our neighborhood is full of kids who go to school with Ella, so when we see them out and about they don’t react because they see her every day at school.  When we eat out we usually hit up the same 10 restaurants, so they don’t even give a second look and in most cases, they are on a first name basis with Ella. 

Joe and I decided long ago that we had 2 choices: 1) Stay home all the time and raise Ella in a bubble, or 2) Go out into the world and learn to ignore all of the stares and answer the questions as open and honestly as we can.  The truth is, a majority of the people who come up to us are genuinely interested in what happened and are only asking out of compassion.  Most people assume she has been in some sort of fire and feel like they can offer help.  I appreciate that they want to help and am perfectly fine informing them about EB.  Of course there are those few that choose to give dirty looks or make rude comments, and there are definitely those that assume I’m a bad mom and she’s been left out in the sun for too long, or I’m feeding her too much sugar.  But for the most part, people are kind.

Unfortunately, Monday I had one of those terrible experiences that made me want erupt.  Monday I decided that we were going to have a mommy and Ella day.  Nothing too exciting, just a day out of the house for us to spend together before school starts back in a couple of weeks.  It started with a trip to Target to buy school supplies.  Ella read each item on the list perfectly while I pushed the carriage up and down the aisle to grab the items.

Once we finished with Target I told Ella that we were going out to lunch, just us girls, and she could choose any restaurant she wanted to.  It didn’t take her long to decide that she wanted pizza and wanted to eat at a local restaurant where we often eat.  In fact, when we arrived Ella’s first question was whether or not her favorite waitress, Betty, was working.  Betty was not working, but that’s beside the point.  We sat in our booth and soon placed our order.  As we were waiting for the pizza to arrive, I decided to take Ella’s picture and text it to Joe.  While I was focusing my phone, Ella got a strange look on her face and started to look at something out of the corner of her eye.  Standing at the end of our booth was the bus-woman (not sure what to call her, but the woman who buses the tables when people leave).  She was staring at Ella very intently, as if she was examining her entire body.  People often stand back and try to get a look at Ella, but within seconds they look away.  And they usually stare from a distance in hopes that mother bear will not catch them in the act.  This woman, however, was standing right at the end of our table.  We were at a 2 seater booth, so she was right upon us.  I looked at her and smiled (this usually triggers something in the person that tells them it’s time to look away)…she still stared.  I asked if I could help her…she just stared.  I ignored her and took Ella’s picture…she continued to stare.  Finally, I started trying to have a conversation with Ella (who was obviously very bothered by this stranger)…the woman STILL stared.  She stood there for probably 10 minutes before finally walking away.  And every time she would walk by to clean another table, I could see her trying to catch a glimpse of my child.

Ella hates being stared at.  She knows how to answer when kids at school ask about her boo boos, and she knows to politely ask them not to stare.  She even knows that it’s not polite for her to stare at other kids.  Most of the long stares come from kids, and the worst are from kids whose parents don’t try to use the opportunity to teach them about what is rude and what isn’t.  There are parents who just stand to the side and let their kids say whatever pops into their mind while Joe and I try to redirect them away from our child.  But this was a grown woman who kept staring for a ridiculous amount of time.  I didn’t want to be rude to her by making a mean comment, yet she was being rude to us.  I wanted to say to her, “Hey Lady!  All I want to do is have a fun lunch with my daughter and all you can do is ruin that lunch by staring at her.  GET BACK TO WORK!”  But I didn’t want to cause a scene.

I don’t think I handled it the right way, by just trying to ignore it.  But I’m not sure what would have been the right way to handle it.  Being a mom is hard.  Being a mom to a non-typical child is really hard.  I want to protect her from those rude people, to yell at those who give her a negative look, or stare for just a minute too long.  But I also want her to learn that rudeness doesn’t always require a negative response.  There are ways to rise above it and hope that the other person learns something in the process.  I want her to see a loving mom who isn’t ashamed of who she is.  A mom who looks beyond the boo boos and answers questions from strangers with love.  Not a mom who walks around with her guard up waiting to attack.  My first responsibility is to Ella.  My job isn’t to teach others what is rude and what isn’t.  My job is to teach Ella how to respond to rude comments and stares with dignity and Godliness.  The last thing I want to raise is a child who walks around with a chip on her shoulder.

I have to admit, I have been known to give rude stares back.  I have been known to say “Stop staring at my kid!”  I have been known to contact a department stores headquarters and report employees who made rude remarks about Ella.  And yes, I’ve been known to yell (yes, full blown yell) at a kid (in front of his father) who came up and said “ewww” while pointing at Ella.  I’m human.  While I know those weren’t the right way to respond either, I also want Ella to see a mom who knows the limit and will stand up for her when necessary.  It’s a fine line between the two, and I’m still learning when to cross.


Meagan Silvernale said...

Wow. You are a strong woman. But I totally get the mama bear in you needing to come out and protect your baby. It's hard cuz so many people out there are so mean to people with any type of disability (or condition) and they grow up to have children who learn this awful behavior.

Anonymous said...

Don't understand how people can be so rude...especially to a child. Sounds to me like you handled yourself much better than I would have...Ella has a wonderful role model! BTW-I'm sure she will be a wonderful big sister!

Donna Tadlock
Millbrook AL

Carrie said...

I get kids, they often have difficulty sensory what comes out of their mouths but that was rude. You may mention it to a manager, maybe the woman needs to be educated. I am a special education teacher and I have had a few parents in the past who have made up little cards that said something like "my child has Autism which means that he displays behaviors that you may think are strange or disruptive at times. Please be patient and then their was a link to a website."

Jane Taylor said...

I have been reading your blog for some time and am so impressed and lifted by your little family. You and Joe are wonderful people, and I want you to know that your blog has helped me so much and has given me great illumination on how to live life. Thank you!!

Simba9960 said...

Hey Katie - I get 100% where you're coming from...I'm the same way when people ask me about Bee. I'm so happy to "educate" the world about EB. Of I have a short version and a long version depending on location, time and genuine interest of the person asking...but those that just stare and stare kill me. I tend to be very vocal (my mother has told me that my tongue will be the death of me...LOL) and to those that are rude I always ask "may I help you?" they snap right out of it or I continue w/sarcasms while they're still around. Horrible I know...but it's the best way I've found I can handle the situation. XOXO

Anonymous said...

As a mom to an adult child with autism, my first thought was perhaps this lady had some special needs of her own? Not that it excuses her behavior, but if that is the case it mght shed some light on her behavior. Just a thought.

Michelle Farley said...

Some people will never learn. I have a son with Asperger's and we get nasty comments about his behavior sometimes. However, he knows better than to do what other people do.

Anonymous said...

Good for you with your restraint - the woman had problems of her own and, really, if she's bussing tables for a living, she's got many more issues than Ella does. I've had the pleasure of meeting Ella and if that woman had just said, "Hi there", Ella would have talked her into loving her. So that woman's the poorer for her rudeness.

Anonymous said...

My little girl is mildly 'special needs'. She stares at people. Not out of rudeness, but out of curiosity. I often find myself using her moments to teach her and her siblings. My goal is to make sure that they know and understand that every single person is different. It is what makes all of God's children special is that there are no 2 alike. The other day I heard my oldest daughter (7 years old) explaining to her brother and sister(5 year old twins) why we are all different and how important it is. She went on to tell him how we need to embrace people who look different and make sure they know that they are special and loved just as they are instead of staring at them or commenting. You are doing the right thing by making sure your little one knows her own self worth and how her love is priceless within her family. I grew up down the street from the Murray family and am proud to know them. I am sure sweet Ella will change the world one day just like the rest of the Murray's.

Anonymous said...

I agree with the other comments that on reading your story, my initial thought is this woman has some special needs of her own. Since it's a restaurant you frequent often, I'd suggest you have a conversation with the manager. They need to know if an employee is making their customers feel uncomfortable. We've encountered these moments many times, and it always leaves me with an undercurrent of anger. Taking some type of action helps dissipate that, plus it shows our children that we don't have to silently endure others' rudeness.

After 8 years of dealing with strangers' reactions to EB, I still don't feel adequately equipped to respond to some situations.

Take care -- Adrienne P