Talk About Us Behind Our Back

I love to watch people. Not in a super-creepy-stalker kind of way, but I do love to observe people; how they relate to others, their mannerisms, and I like to ponder over what their story might be. Now that I have a child with special needs, I cannot help but carry this interest over into our own life. It is just a natural inclination of mine to watch. I watch how people look at my Autistic child, how they respond to him, ignore him, make faces over him, smile at him…there are so many different reactions. Some people’s reactions offer such comfort and put a smile in my heart. Other times, people’s reactions can leave me feeling very alone, very vulnerable, sometimes angry, and sometimes sad.

There is one particular day out of each week that is very hard. It’s the day that my little girl, Grace, goes to dance. So much of what our family does or doesn’t do revolves around Ezra. I wanted Grace to get to participate in one “something” that she would greatly enjoy that is just for her, and she chose dance! So, once a week, I pack Grace’s dance bag and then I pack Ezra’s survival bag for the Survival of the Dance Studio Waiting Room. I smile. I act excited. My excitement is for Grace. I want her to feel super special because this is her special day. Inside, my stomach churns because honestly, waiting rooms are a brutal place for my Autistic child.

First, in a waiting room, you must wait. Waiting is not yet a concept that my sweet boy fully understands. He may be able to wait for a very short time, but for an hour and fifteen minutes, it is a huge feat. Also, in this particular waiting room you have noise, it is very crowded, and there are lots of people. Let me tell you, this is the perfect set up for sensory overload! So, I pack Ezra’s survival bag each week and say a prayer over him as we take our little ballerina to her class. 

The owner of this dance studio has met Ezra and is so very gracious and understanding to our situation. We take up a good chunk of her waiting room each week. Ezra sits strapped into a stroller, we bring snacks, toys, a DVD player, and the IPAD. Sometimes I end up sitting on the waiting room floor with my head in Ezra’s lap. Sometimes Ezra spits on her floor. Sometimes Ezra chunks a train through the waiting room air…it’s never a dull moment, that’s for sure!

As I sit through these dance sessions, I watch people. You see, my child does not sit in a wheel chair. My child does not have braces on his legs or need special medical equipment. My child does not look any different from any other “typical” kid. That’s right; my child has an invisible disorder that is manifested through behavior. So, instead of people smiling and understandingly looking on, I usually am met with looks of disgust (why can’t that mom control her child?), disapproval (that child is out of control) and even just curiosity (what’s wrong with that kiddo?).

In my Survival of the Dance Studio Waiting Room saga, I have observed something very interesting: the younger children smile at Ezra, they watch his Thomas Train movie with him for a short time, they say “hi”, and they are very accepting. It is about half way through our waiting time that a group of older girls arrive for their class. What a difference there is! Don’t get me wrong, some of these girls have been very sweet, but many have snickered at Ezra’s odd head movements and many have made comments. One that I remember specifically came from the precious looking girl with the purple bow and braces, “That kid is weird!”  Not so precious. I believe I have mentioned before that I am used to comments by now (read  1 in 50: My Supermarket Story), but that doesn’t mean that they don’t sting a little.

After my dance studio observations, my question is this: At what age does this disconnect of acceptance happen? Is this a learned behavior from an adult figure? What are we teaching our children, not just by words, but by example?

I have conviction now more than ever to teach my own daughter to love and accept, to be nice to everyone, to include and not to exclude, to look past handicaps and to look straight to the heart of a person.

In fact, yesterday morning as I dropped Grace off at school, this was our conversation:

Me: “Grace, don’t forget to be nice to everyone!”

Grace: “I know momma!”

Me: “And if you see someone sitting alone….”

Grace: “I should ask them to come sit with me.”

Me: “And if other kids  are laughing at someone…”

Grace: “Don’t laugh and go be their friend. Momma, I know!”

Me: “Because God made everyone special and…”

Grace: “And he loves them very much!”

(Yes, thank you to Veggie Tales for that last bit!)

I don’t care if Grace gets tired of this. It is something that I teach her with a deep passion. It comes from a deeper passion than I ever had before I had my sweet Ezra. I know that I cannot just teach her in words, but I must teach her through my own actions.

What are you teaching your children? Do your actions display a different message than your words? Did you invest the time to teach your child these life lessons but as they have gotten older you have forgotten to remind them of such things?

It is so important. It is important to families like ours. It is important to children like my Ezra.

There is one particular little boy at our church, who is in Ezra’s Sunday School class, whose Mamma is teaching him about Ezra. She explains bits and pieces of my blog to him. She has told him that God makes everyone special and everyone different and that that’s ok. She asks me questions about Ezra so that she can better understand him, and she shares that information with her son. And you know what? Her son rocks! He takes such consideration of Ezra. He says “hi” to him, tries to share toys with him, obviously wants to understand him, and treats him as another classmate. I am so thankful for this sweet boy who treats Ezra like a friend, instead of ignoring, laughing, or making faces.

So, you have my permission to talk about our family! I truly believe that these inconsiderate “looks” and “comments” come from not knowing; from a lack of understanding. If you want to, tell your children about us. Tell them about Ezra. Help them to understand. You have my full permission to talk about us behind our back!

See Ezra's Smile! He loves to play with his big sister!

See Ezra's Smile! He loves to play with his big sister!