It was early enough for Target not to be too busy, I found a good parking spot (well, the handicapped placard does help), and all five of us were in a great mood. We were buying some promised new toys for the yard, charcoal, marshmallows, and a few other necessities for the first really warm weekend, the beginning to April vacation.
My son was walking as we entered the store, but we had brought the stroller, just in case, as I always do now in any place that is big and has fluorescent lighting. He strutted in, looked around, then looked back at me and climbed in the chair. We went on our way.
It really was a good day, with everyone in a fantastic frame of mind. Then, something happened. It was not a mean thing, or even a thoughtlessly cruel thing. It even surprises me that I am still thinking about it. Still…
We were in the outdoor toy section when a man (maybe around my age) and his son (probably around five years old) came down the aisle. I saw the boy look at my eleven-year-old son in the stroller, just about to ask the inevitable question, and his dad took his hand and guided him quickly away from us.
Later, looking for marshmallows, we saw them again. By then, my son was bouncing in the chair, laughing, as he often does when he is either excited or overstimulated (and big box stores nearly always do it). He was all right, though, but I could see the boy’s concern. The boy tugged on his dad’s jacket. His dad kept shooshing him, as he quickly navigated his son and himself out of our path.
I noticed, as we made our way to the cash registers, that the dad was staring back at us from a farther line.
Was it that bad?
Well, I sometimes wonder. It was still a glorious day, the type you know was good when night finally comes, and the kids are whispering in the dark, then are suddenly quiet because they are too tired to stay awake longer; when you, adult, fall into bed at night all sore and smiling and snuggling into a bathrobe, warm and exhausted, too, after the kids have fallen asleep; when the laundry basket is full of clothes that are absolutely, positively, filthy and smoky, and covered in grass stains. We had that kind of a day. We went home from Target, turned the music up, laughed, blew bubbles in the yard and played giant Frisbee games. Actually, it was my older son who was having the tougher day, trying to figure out where he could find enough wheels, wood, and a motor to build a go-kart—and frustrated when I was less than encouraging about that particular plan. It was a fine day, a good day, a typical day for nearly all the families around us. And still, that father’s stare stuck with me.
I wonder, sometimes, does it really seem that bad, this life? When other people see an eleven-year-old boy retreating to a stroller (didn’t know they made them his size?) to make it through a store, but unable to tell anyone about it because he can’t talk… when they see the meltdowns, or actually hear of the difficulties, does it really seem that bad? Do the non-staring people feel that way, too?
Sometimes, it’s been the opposite that has stuck with me: the overly helpful people, the ones who are trying, who still don’t know what to do. But they do try; they don’t run away. There are the complete opposite, the ones who look for that moment for their own advantage—a Kodak moment, a charitable act, a momentary kindness that makes a statement but is not so kind—those who seek the shunned, emphasize the difference in some hope of making themselves seem better. I don’t mean people who really help, who really care—only those who think that they seem like good people if they pretend to. That is perhaps the worst.
I realize the difficulties in knowing how to act around a kid with disabilities, much like moving to a new country. What are the customs? What did they say, and did that gesture mean something? Are these people nice? It’s a learning experience, emotional, not always quite right. It’s not within the comfort zone, and yet, it does not have the same thrills of living life that is conventionally adventurous… at least, at first.
I have told the tales of trying to meet these kids’ needs, of being frustrated through various agencies’ incapacities to do the right things, or to be funded enough to do them. I have told of the heartbreaks when tough decisions have to be made, when things fall apart. But somewhere in there, I hope I have conveyed the many joys. If I have failed to express those enough, maybe I should try harder. I fear I have frightened too many people.
Challenging, yes, it is. But isn’t life that way for us all? Not unhappy, not bad, though! The joy of yesterday—that simple day—warms my heart, thrills me. It is difficult to explain why. When things are so wonderful, do we ever think to wonder why?
We were happy, and I suppose that is why the father’s stare stuck with me. The stare, I believe, was one of confusion, one of fear, one of pity. I have indeed seen the look before, even heard the words that tend to go with it. And yet, I rarely have the right response to it, or even know how to deliver that response if I have it.
I sometimes wish for a more forgiving world, for one that didn’t mind difference, for a world where the richness of life accepts the difficult parts, where we can acknowledge that the best things are never simple, and where the fear of facing my family did not prevent people from wanting to get to know any one of us individually.
My family really is like any other. It’s just not so obvious.

4 comments
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Monday, April 21, 2008 at 11:35am
lookingforlifeshumor
Just a quick comment - I certainly don’t know why the father (assuming) was looking at your son from a distance, but perhaps he was looking then because he felt he couldn’t look earlier (when physically much closer) and he was trying to “figure out” what the deal was with your son so he could answer his child’s questions? That is a horrible run on sentence! I have to admit that a) we live with a disability in our household and b) we often encounter people with various disabilities in public. My children ask questions - why does he do that? and what happened? and what is that (piece of equipment, etc.)? I think it is okay for my kids to ask questions and I want to answer them as best I can so that they can learn and not be afraid. If I don’t have a good idea of what is going on with the person and if it isn’t appropriate for me to ask, I try to look and see if I can come up with an appropriate answer for my kids. I try not to stare when in close quarters as I do not want to be rude, but I do try to covertly look so that I can better answer my children’s questions - and maybe help them feel more comfortable with the people they encounter in the future - all shapes, makes, and color. So - please don’t feel too uncomfortably conspicuous - maybe you helped someone broaden their understanding and acceptance in some small way
(but I also TOTALLY get the feeling conspicuous thing - been there!)
Monday, April 21, 2008 at 1:13pm
wordsmythe
Thanks for the comment! Just another example of people (me) not considering another person’s (the dad’s) perspective. You are probably right–he probably was trying not to be rude, while attempting to figure out an answer for his son.
But the distance is what drives me crazy. So often, we distance ourselves, put up barriers as a safety measure–and that is certainly appropriate at times. But what is safe? I think it goes with expectations–we feel unsafe when we are unsafe, but also when things are not as we expect them to be.
I wish we all felt comfortable enough about difference to be able to ask questions without hesitation or fear of judgment. But the truth is that we do judge, and we do hesitate–we all do, I know–but it is often the lost moments that create the space, and in the process, the loss of so much of life’s richness.
Monday, April 21, 2008 at 10:10pm
specialgathering
wordsmythe,
Somehow, I put my comment on the wrong blogsite. Not sure how I did that. I’m an area director of The Special Gathering, a ministry within the mentally challenged community. In traveling with our members, I’ve often encountered the same reactions. This is sad to me because these folks (like this dad) will probably never encounter the compassion, joy, wisdom, and depth that persons with disabilities have to share.
Thanks for sharing with us.
Monday, April 21, 2008 at 10:20pm
A visit with a family « Specialgathering’s Weblog
[...] April 21, 2008 A visit with a family Posted by specialgathering under Developmental disabilities, Individuals with Intellectual Disabilities, Special Gathering, mental retardation, mentally challenged community | Tags: Developmental disabilities, Individuals with Intellectual Disabilities, mental retardation, mentally challenged community, Special Gathering | I just read a loving recounting of a day in the life of a family that lives with a child with a disability. Thought you might want to read it. The blog is written by the mother in the household. The blog is wordsmythe [...]