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Monday, March 8, 2010

What Are You Looking At?

Someone recently asked me how I deal with people who stare at my 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 raising of my son. I try to maintain that attitude when looks become stares.

What bothers me most is that behind every stare is a thought, perhaps a question that needs answered or a statement that needs to be clarified. As the parent of a special needs child, 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, 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 wondered 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.

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 Jelly Bellys. We are weary. Thank you for noticing (and that is a sincere thank you). What’s more important is the source of our strength. Your compassion is always welcome. Pray for us, but do not pity us. There are greater things happening here than any of us realize. And if you really want to do something skip down to stare #6.

3. The curious stare: “I wonder what is wrong with that kid.”

Response: I’ll write a book on it someday. Meanwhile, come and ask. (Preferably not right in the middle of an episode though or I might emotionally vomit out, "What's wrong with him? What's wrong with you!") When things settle down, I’d love to share our story with you. I especially don’t mind if you are a small child or young person.

4. The polite stare: “I think they just saw me staring. I shouldn’t stare. I’ll smile now just to let them know I wasn’t staring rudely.”

Response: Yeah, I saw you. It’s ok. I’ve been in the same position before, not knowing what to do. Thanks for the smile. 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.”

Response: A kid just threw 500 jelly beans down on the mall floor. You didn’t notice? Are you kidding me?

6. The empathetic stare: “I wonder what it is like to live his life. I am thankful my children are not disabled, but I wonder if I could handle that role as a parent.”

Response: It’s heartbreaking sometimes, but it has its amazing moments too. Go home and pass ball with your kids. Squeeze them tight. Take a long walk, have a long talk, and thank God for them. But don’t forget that there are others out there that might need your help too. Get involved, volunteer, mentor, pray, educate and most importantly learn…these kids have much to teach.

I’m sure there are many more stares to interpret and many more responses to be communicated by special needs kids and parents everywhere.

The bottom line is this: the next time you’re in the mall and a Jelly Belly grenade goes off, be cool. Its ok to look...just stop and help us pick the darn things up.

10 comments:

  1. I appreciate your blog very much. I work for a Christian ministry that supports people with developmental disabilities, and we have dealt with some of the same reactions when supporting people in the community.
    Have you read "The Boy in the Moon", by Ian Brown? He is not a believer but he certainly writes about searching as he looked for answers for his disabled son (CFC). I've just finished it and certainly found it helpful in understanding what it is like for a parent of a child with a disability.
    Thank you for being willing to be vulnerable in your own sharing

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  2. Well done yet again, bro. That had a Stuff Christians Like bite too it. Funny.

    Also, my kids get those stares when they're out with me, so I'll make sure they read this ;)

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  3. Hi Greg - Just found your blog today. Thanks for sharing about your son. We have a sweet autistic son of our own.

    You can check out our Max at http://cookwire.blogspot.com/2010/02/max-cover-model.html

    Thanks again. God Bless.

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  4. just wanted to say thank you for your blog. it has ministered to me greatly tonight.

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  5. I love this story,can totally relate to it :) I just found your blog today too through another blog :)I love that you love God too and this is so evident in your posts, I am looking forward to keeping up with you and your family!

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  6. I think the worst place in the world to be when your diffabled child is melting down is in the checkout line at Wal-Mart! Your analysis of my experience with staring contests is quite accurate . . . sadly . . .

    Fortunately, our 20yo with autism has been making progress and the stares are becoming less frequent.

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  7. Hi Greg:

    I was pointed in your direction by Tim Challies for another post ("Contagious Comfort") but wanted to leave you a comment here.

    As I was reading this, I nodded my head in agreement. We are blessed with a 7-year-old with Down Syndrome. Unfortunately, there's another stare that we could add to the list: "If you knew ahead of time that he was going to have Down Syndrome, why didn't you do something about it (i.e., abort)?" (Estimates today indicate up to 90% of children that are prenatally diagnosed with DS are aborted.)

    As I think you know (perhaps better than we do) the blessings far outweigh the challenges. God is so loving and gracious to us. We couldn't imagine life without *both* of our sons!

    Thanks for sharing your stories and for your wonderful insights.

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  8. I am new to your blog, I found it through a link on a friend's Facebook page. It caught my eye because we have wonderful family friends that started a foundation called "Zachariah's Way" several years ago. They had a grandson that passed away before the age of 5 due to several birth defects...but what an impact that sweet boy had on them in such a short time! When you have time, look at their website, I think it would be encouraging for you: http://www.pureministryproject.com

    Thank you for loving God first, so that you can love your family in the best possible way. I look forward to following your journey through your blog.

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  9. I volunteer with disabled people every weekend and I bring one of them to church with me most Sundays. I've worked with them in the past.

    Normally when this type of thing happens I pretend not to see. Why? I dislike it that people assume it's okay to glare at someone because they're different. When I'm having a bad day I don't want people looking at me no matter how sympathetic or curious they are. I think it's safe to assume disabled people want the same.

    But after reading this post I realize that my thinking may be a little simplistic.

    skerritt.ca

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  10. Just found your blog and love it! But you left out the "shrivel up their nose and pull away 'I hope it's not contagious' stare" As if cerebral palsy, cortical vision impairment, developmental disability and nonstop self-stimulating behavior could be contagious.
    I have a rather neglected blog called Special Prayers at specialprayers.wordpress.com

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