Last week I took the kids and went to see my niece's new room at college. It was a risk. It was our last day before therapy began. I had to get us out of the house because it was 9 am and Josh was already trying to destroy something. I think he was beating on something with a wooden spoon and the banging made me decide to load them in the car and drive an hour away. When we arrived and started to walk across the lawn to the dorm, Lilli started to cry. She wailed all the way up the sidewalk, causing every head to turn in our direction. I pressed on, singing Twinkle Twinkle Little Star with no shame, to no avail. In the dorm, I took her on a walk down the hall to see if that would make her happy. She was so out of sorts. She just wanted to get out of there. Lilli is very upset by new situations, and we can't live our lives in a bubble (although I try sometimes.) So we have these experiences a lot when we go out in public. I am very used to stares. The sympathetic stares, the your-child-is-too-loud stares, the your-child-is-spoiled-and-should-be-punished stares, the what-is-wrong-with-her stares, and the why-are-your-torturing-your-child stares. I don't care about the stares. I focus on Lilli and I ignore them.
And then… here came the girl that made my day. A college-age girl slowly made her way down the hall with those metal crutches that have cuffs around the tops for arms. I don't know what to call them, I just knew instantly that this girl had a disability. She smiled sweetly at us as we got closer, despite the fact that Lilli was sobbing uncontrollably.
Then she did something that rarely happens to us. She looked right at Lilli and said –directly to Lilli- "What's your name?"
I did what I always do. I waited a beat, and then I looked at Lilli and said, "Say, 'My name's Lilli. I'm still learning to talk.'" I looked up at the girl and smiled. She smiled at me and looked right back at Lilli and said, "Lilli, that's a beautiful name!"
I looked at Lilli and squeezed her hand and said, "Did you hear that Lilli? She said you have a beautiful name!"
And Lilli smiled.
That simple, typical nice gesture from a stranger, meant the world to me. That girl "gets it." She knows what it's like to have people stare, or look away in discomfort, or not know what to do or say because they see her disability first and not her. She got it. So when she saw Lilli, she knew exactly what to do. And it blessed me so much.
I was inspired to write this post by a new very special friend of mine. She mentioned that people often ignore her child because she is in a wheelchair and does not talk. My goal is to help people know what to do when meeting kids who have special needs. It really is very simple. Focus on the person, not the disability.
I think of how different people have reacted when meeting Lilli for the first time. Many are unsure of how to interact with Lilli because she does not talk, and she does not always make eye contact. It really does make it difficult to try and hold a one-sided conversation with someone who does not talk back or look at you. But you never can tell what that child is thinking, how much he or she understands, and how aware they are of what goes on around them. This is a child, a real person with thoughts and feelings.
I know what it's like because before I had Lilli, I experienced that uncomfortable feeling myself from time to time around people with various disabilities. If you are not used to it, it can be overwhelming. You don't know what to do or say. So maybe you do and say nothing. Now that I have Lilli I know what's like to be the people who are stared at in the mall, or to have people make a big deal out of my other two children but act as if Lilli is invisible. It's tough. It hurts. Let me help you if you are ever in a situation where you interact with or meet a child with special needs.
Let's start with the negative and end with the positive. We have personally experienced the following negative interactions with both strangers and people we know:
Ignoring Lilli and talking to us as if she was not there
Staring at Lilli with looks of disgust, pity, or just obvious discomfort
Talking about Lilli in a negative way in front of her, as if she could not hear or understand
Talking to Lilli in a loud, you-don't-understand-very-well kind of voice
Not including Lilli in certain activities because they figure it won't matter to her anyway
We have experienced the following positive interactions with both strangers and people we know:
Getting down on Lilli's level to say hi to her and play with her
Talking directly to her in a way you would talk to any kid her age – complimenting her, etc
Praising Lilli's accomplishments to us in front of her so she can hear it
Giving Lilli thoughtful gifts and not being insulted when she pays no attention to it at the time
Getting hugged, kissed, drooled on or pulled on by Lilli and being a good sport about it
Every child is a gift from God. If a child's special needs or disability makes you feel uncomfortable, here is my cheesy, rhyming list of three things you can remember the next time you see that child:
- Forget the "rules."
- Get over the drool
- Talk about school
Get over the drool. Um, some people let their dogs or even their cats lick their faces and share their ice cream cones with them. People have no problem with an animal's saliva but somehow another human being's drool is gross. If a child with special needs is drooling or doing something else that makes you feel uncomfortable you need to look at the person, not the drool, and get the heck over it. Look at the person, not the wheelchair. At this child, not the part of their body or face that does not "look quite right" to you. Look at the person, not the disability.
Talk about school. Can't think of what to say? Almost all kids go to school. That's an easy place to start. Where do they go? What grade are they in? Even though Lilli is homebound, she still has a teacher and school. If the child cannot talk, just include the parent in the conversation. Then you can make a comment to the child. Here is an example:
Visitor: "Oh, Lilli you are getting so big! What grade are you in now?" (looks at me for the response)
Me: "Lilli's in second grade now."
Visitor (looking right at Lilli) "Wow, a big second grader. You're really growing up. I hope you have a nice teacher this year!"Compliments are easy too. They do not require a verbal response, and they make the child feel good and included in the visit.
It means a lot to Lilli, I know. I have seen it happen many times. If a person does not talk to Lilli or get down on her level, she will ignore them. They night as well be a piece of furniture in the room. But when people talk to Lilli, she might not look at them but I can tell she is listening. She will smile, laugh, and sometimes she puts her hand on her neck. It is a gesture I see when it seems like she wants to say something, but she knows she can't talk to get it out. Lilli loves to have people pay attention to her.
She can't talk, and she sometimes drools. But she is a beautiful, special little girl who deserves to be a part of the conversation just like everyone else.