At four, she doesn't walk or crawl (yet). When she's really concentrating, sometimes she drools. She has a vision impairment, and she tunes in so well with her "bionic ears," as we call them, that sometimes she forgets to use her eyes to see. With all her challenges, she has curls that often get comments, and a genuine smile and giggle that will melt a person. She understands almost everything around her and even picks up on us spelling out, "I-C-E-C-R-E-A-M" when we suggest it to her siblings, thinking we can hide messier things like that from her. She speaks dozens of words and puts together short phrases, but is still not understood by everyone. She is preserved in a state of innocence and only cries over getting her hair combed and having to end bath time - familiarly typical of a 4 year old.
From the time she was little, we got comments of "Aww, she's so sleepy on your shoulder!" when really she couldn't hold her head up yet. I thought as she got older, it would get better - at least people would realize she had a disability and not mistake it for being tired.
I remember the first time I found a different end to the stares. We were standing in line at the grocery store and an innocent little girl stood staring from the next checkout stand over. I could sense her little eyes and I had the deep feeling for her to know my little girl as I did - not as someone different than her, but as someone with so many things in common. With the little girl's eyes glued to me, I reached forward and kissed the top of my daughter's head as she worked hard to balance herself in the cart. I continued to talk to her as we stood in line, gave her hugs, and sang songs. By the time we were both checking out, that little girl was staring even more intently at us as her mom led her away out of the store - not because she noticed my daughter was different, but she was smiling and wanted to be a part of our fun games while we waited in line.
It was that experience that shed the first bit of light and a way to shape how people view those with disabilities. Gaining confidence, I used this little game several times in circumstances that the staring could have been uncomfortable. Maybe I was ready for the next step.
Again in line at the grocery store several months later, I heard a little girl ask her mom something about my daughter. I looked over in time to see the mom grab her little girl's pointing finger and say, "It's not nice to point. Don't stare at her." My heart sank again.
I have always been touched by the innocence of children. It was okay for her daughter to be curious.
Going against everything that seemed logical and socially acceptable, I wheeled my daughter over to the little girl and her mom and said, "This is Bryer. I noticed you were looking at her. She is 4. How old are you?" The little girl perked right up, "I gonna have a birfday and then I be 4 too!" Ding! Ding! Ding! We found something in common! I told her that Bryer loves to sing songs and listen to music on my phone. "I play my mom's phone!" she giggled, as she held up her little fist with a tight grip on her mom's phone. Bonus! More things in common! At the sound of the little girl's voice, Bryer smiled her big, whole-face smile. I explained that Bryer's body doesn't work like ours, so she is still learning to do things that we do. I told her that she understands almost everything we tell her and she answers questions to tell us what she needs. With a little explanation, I could see the mother's face soften and I knew I was on safe ground with her too. For some reason it was easier to talk to the curious little girl than the grown mom.
After a couple questions from the mom and quick answers about what cerebral palsy is, we walked away and found ourselves at the back of the line. I hope that little girl will stare next time - and then I hope her mom helps her follow it up with a hello. I hope she will step outside her comfort zone and make friends with someone in her school down the road that has special needs. I hope her mom won't feel ashamed that she caught her daughter pointing, but instead, honors that curiosity and sees it as an opportunity to get to know someone that may look or act differently than she does. Everyone deserves kindness. Everyone deserves a friend, even if it starts by staring and just being curious.
As a special needs mom, I love it when people ask about my daughter! I am not offended in the slightest and welcome an opportunity, as most moms do, to talk about my pride and joy! It's more awkward to avoid the obvious and wonder what someone thinks. Before I was a special needs mom, I always wondered what the 'right way' to ask about someone was. Now I know a friendly hello or a sincere compliment is all it takes and conversation will follow. I've had other special needs parents ask, "What is her diagnoses?" which is a tactful way to want to know more.