5 Rules to Follow When You See My Daughter With Special Needs
Whenever we go out in public with my daughter, Noelle, and Frank (“Frank the Tank” is the nickname of her oxygen tank), people inevitably stare, point and whisper. And sometimes, they come up to us. Sometimes it’s frightening, but mostly it’s just annoying. Here are the five rules these people need to follow.
I was loading Noelle and Frank into the back of a shopping cart at Target when a woman came up behind me and put her arms on my shoulder. She then laid her hand on my head (I can’t make this stuff up) and started to pray for Noelle and me.
Which brings us to rule #1: Don’t touch me if you don’t know me.
I was so upset at that this lady for touching my head that I moved away from her. I’m all about being prayed for, but God only knows if this woman washed her hands the last time she used the restroom.
She then asked me every question in the book about Noelle: “Why does she need that oxygen tank? How long has she used it? How long will she have to use it?” This went on for about five minutes before I told the lady I had to go shopping.
Which brings us to rule #2: We don’t have time to play 20 questions.
I try to be as nice as possible when people ask these questions, because it happens a lot. Quite frankly, we like the prayers (as long as they aren’t touching us), but the 20 questions game has got to go.
As we walked away, the lady said to her friend loudly, “Oh, I feel so sorry for that child.” This infuriated me. I turned around and glared at that lady. Then my mother’s voice went off in my head, “If you can’t say something nice, don’t say anything at all.” The last thing my kid needs is pity or anyone feeling sorry for her. To Noelle, this is her life. She knows no different. Does she realize she’s different? Sure. Does she care? Heck no!
Another time in Walmart (the first and last time I took her there), another older woman came up to us as I was reaching to grab an onion. As I turned around, I saw this lady kissing Noelle on the forehead.
Which brings us to rule #3: Don’t touch my kids if you don’t know them. Kissing them is grounds for me to punch you!
I yelled at this lady to get off my kid. I took a deep breath and explained that her immune system is compromised because of her lung disease. I told her we don’t really appreciate strangers touching her and that parents with typical kids wouldn’t appreciate it, either. Unfortunately, this exchange spurred the inevitable line of questions (see rule #2).
In yet another store, a woman saw Noelle and started talking to her. Andon was with me as well and the woman didn’t so much as look at him. In fact, she downright ignored him. She talked directly to Noelle about how cute she was and how beautiful her smile was and didn’t say a word to Andon.
Which brings us to rule #4: If a kid with special needs has a brother or a sister, pay attention to them, too.
The siblings of children with special needs inevitably have had to deal with a tough transition as well. They deserve a lot more attention than they get.
When I’m shopping in store with my family, we’re not really there to meet new friends or have people feel sorry for us. So what should you do when you see a family with children with special needs at a store? If you feel so inclined, say a (silent) prayer for that family. If you really feel the need to say something, applaud the mom or dad and just tell them they’re doing a great job. But what’s the best thing to do?
This finally takes us to rule #5: Just let us shop.
A version of this post originally appeared on What Doesn’t Kill You, Makes You Stronger.
The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.
Want to help celebrate the human spirit? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.