Someone recently asked me how I deal with people who stare at my severely disabled son in public?
Truth is, every time I venture out into public with Jake I am essentially inviting the world to see a little of God’s grace in the life of my son. I try to maintain that gospel attitude when glances become stares.
Deep inside I realize every stare is a thought, perhaps a question that needs answered or a statement that needs to be clarified. So as the parent of a child with multiple special needs, I have learned to sometimes (not all times) interpret the stares and decipher the thoughts.
I have also formulated some responses to these stares–other than the initial, internal, parental-emotional, rhetorical response of, “What are you looking at?”
Take for instance a recent trip to a crowded shopping mall where, without warning, Jake got mad and threw a box of candy (which contained about 500 or so Jelly Belly jelly beans—his favorite snack). As the box hit the tile floor of the mall, it exploded like a hand grenade, shooting sugary projectiles for 25-feet in all directions.
People froze as if they had suddenly wandered onto an unmarked mine field. Then, like spectators at the scene of a bad car wreck, every eye in the mall zoomed in on my screaming, disabled son as my wife and other children scrambled to clean up the mess.
So I’ll use this multifaceted shopping-mall-crowd to break down the stares:
1. The angry stare: “Someone needs to get that kid under control. If that were my child I would…”
Response: You would what? You’re right, someone does need to get this child under control. Do you have any ideas? Really? Enlighten us all with your parenting secrets. Tell me what you know about autism, cerebral palsy and PDD-NOS. Maybe you can come to our house, spend an afternoon in our life, and then tell us how we can correct all of this. I didn’t think so.
2. The compassionate stare: “Oh that poor child and those poor parents, they look so weary. I wish there was something I could do for them”
Response: Why don’t you start by helping my wife and kids pick up the jellybeans? We are weary. Thank you for noticing (and that is a sincere thank you). What’s more important is the source of Strength behind our weariness. Your compassion is always welcome. Pray for us, but do not pity us. There are greater things happening here than any of us realize. We are blessed beyond measure to have a child like this.
3. The curious stare: “I wonder what is wrong with that kid.”
Response: I wrote a book about it. You should buy it. All the proceeds go to a great cause. Meanwhile, come and ask. (Preferably not right in the middle of an episode or I might emotionally vomit out, “What’s wrong with him? What’s wrong with you?”) If I do something like that please forgive me. When things settle down, I’d love to share our story with you. I especially don’t mind if you are a curious child or young person.
4. The polite stare: “I think they just saw me staring. I shouldn’t stare. I’ll smile and nod my head now just to let them know I wasn’t staring rudely.”
Response: Yeah, I saw you. It’s ok. I’ve been there too, not knowing what to do. Thanks for the smile and the head nod. I know what it means. Here’s one back at you.
5. The pretend to not stare, stare: “Don’t look. Don’t look. Don’t look. Eyes forward. Just keep walking. Pretend nothing happened.”
Response: A kid just threw 500 jellybeans down on the mall floor and is now throwing a screaming fit and you didn’t notice? Are you kidding me?
6. The empathetic stare: “I wonder what it is like to live their life. I am so thankful my children are not disabled. I wonder if I could handle that role as a parent.”
Response: It is heartbreaking sometimes, but there are God-sized amazing moments too. Go home and pass ball with your kids. Squeeze them tight. Take a long walk, have a long talk, eat peacefully as a family in a restaurant, get a babysitter and go on a date with your wife, and sincerely thank God for your typical family. But don’t forget that there are others out there that might need your help too. Get involved, volunteer, provide respite, mentor, pray, educate, embrace, befriend and most importantly learn…these families have much to teach.
I’m sure there are many more stares that could be interpreted and many more responses to be communicated by families with special needs everywhere. Maybe this post will help. Or maybe we should write a tract or a pamphlet and carry a stack with us as a hand out to onlookers in times like these.
The bottom line is this: the next time you’re shopping and a Jelly Belly grenade goes off, be cool. It’s ok to look. Just stop staring, and help us pick the darn things up.
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