Hard to Know

Two days ago I was killing a little time before picking up a friend at the airport. I have a new-found love of old clip earrings so I thought I would stop in at a thrift store near in the area and see if they had anything good.

Charlie was riding nicely in a cast-off grocery cart, but was getting a little tired as we headed to the check out. As I stood at the check out line, a woman walked up and started engaging Charlie. She smiled and talked to him and started touching his hands. I’m wasn’t exactly loving the situation, but I was standing in a line, so what could I really do?

After what felt like an eternity, she asked, “is he handicapped?” Well, I put on my brightest smile and said yes, gave her a few sentences of explanation and then just let it go. She kept playing with Charlie and I kept waiting for her to go away. She got Charlie’s attention, though, and he started grabbing her hand, which is his version of hello. I warned her he might try to put her hand in his mouth and she quickly withdrew it and said, “I don’t want his slobber on me.” That pretty much felt like being slapped in the store. I was so upset that I immediately took out my phone and tweeted my frustration.

She walked off after that and  I continued to stand there glancing secretively at the woman who had so quickly ruined my day.  As she walked off I spotted some tell-tale signs of disability–a shuffle in her walk, an arm held close to the body and bent at the wrist. I’m no doctor, but I would have bet cerebral palsy.

I felt pretty bad about being so irritated. Actually, I  felt like a jerk.

And while I definitely need some sensitivity training, I also thought about how you would go about teaching your disabled child about the fine art of being mannerly. I could tell him not to touch people, but at this point that’s one of his primary ways of communicating with others. I’m sure there are times when I let him get away with things he shouldn’t–just because I’m proud he can do them. Who needs to be reined in–him or me?

I know that physical disability and social awkwardness don’t necessarily go hand in hand. There are plenty of socially-adept people out there with physical limitations–just ask Oprah.

I ‘m not even sure where I’m going with this. Just hoping out loud that when the time is right I’ll figure out the sweet spot–pushing him to be his best, but accepting him as he is; keeping expectations high, but acknowledging his limitations. Really, it’s the same goal that every parent has, right?

close up of boy looking at the camera

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Comments

  1. Well I think she was wrong and you were fine (if you wanted a vote). Any child can and will slobber at some point so if you don’t want slobber don’t touch.

    • Well, I appreciate the vote, but the whole thing made me think about what I let slide because he’s little and what isn’t really acceptable.

  2. Why are so many people afraid of a little slobber? Both my boys, Bug and Jumby, drool. Neither could/can help it. And to watch people recoil as though it is radioactive acid which will disintegrate their skin upon touch simultaneously amuses me and breaks my heart.

    I get it, people don’t want to be slimed. But I don’t want my child to be ostracized because of a biological function they can’t control and is really the least of their problems at this point.

    Sigh.

    • Oh, Tanis, you are so much wiser than I am with these things. I am still stumbling along through this whole thing. Charlie really isn’t a terrible drooler, but if you let him, he might try to slobber on you a little. I’m not saying people have to like it, but I also want Charlie to know that not everyone appreciated his methods of communicating–you know, without crushing his desire to interact completely.

  3. It’s possible that she may have had some kind of immune system deficiency, too. I say stuff all the time that doesn’t come out right and then I feel stupid but know it’s past the point of being able to make up for it.

    I think it’s hard to know what any person around you is going through at any given minute. I also thing we get used to certain reactions and pre-prepare for those reactions and that causes the people around us to actually come through with said reactions. Does that make any sense??

    • Oh, Sarah, I’m not blaming her. We all have our issues. I’m just thinking about how I can help Charlie put his best foot forward in the world. And yes, I am TOTALLY defensive when strangers are around Charlie–I wish I had a protective force field or something.

      And Dear Lord I hope the woman didn’t have immune issues–I can think of few places less hygienic than the thrift store.

  4. I think as parents we get a little sensitive even in the best of times, when we know there is a problem we really magnify it. She may have come across rude, but maybe she really has issues with that. Some of us wouldn’t care in the least. So I would say just let there be grace, sounds like she enjoyed Charlie but heeded your warning. Give yourself a little of that grace too.

    • Thanks, Nora. I am sure the lady meant no harm and the issues are mine. I’m just trying to think about the point where i need to start cracking down on certain behaviors, so that Charlie is better accepted by his community.

  5. Your post had me thinking about this in a little different way. I was thinking about how we can best teach our kids with disabilities the social manners they need as adults (so they don’t cross social boundaries and say or do things like the woman in the store). However, I don’t think that will always be possible. I imagine my daughter will not be entirely socially appropriate as an adult, based on society’s norms. Then, I thought that I probably need to be more accepting of others (like you were after you saw the woman later in the store), because I hope other people will be accepting of my daughter – both as a child and an adult. It is still really hard when people say rude things, though — especially within ear shot of your child. I guess there will just always be hard things in life — oh, but we already knew that, huh? :)

    • I thought about those things too, Andrea–what to do if your child isn’t capable saying the appropriate thing? I don’t see an easy answer to that question.

      And gosh, I am SO ATTUNED to special needs kids. I constantly find myself telling other people that social awkwardness or screaming and public may be part of a disorder we can’t see. And then there I am in a store, distracted, but still. . . didn’t see that the woman was disabled for quite a while.

  6. Not only is that what every parent strives for, but you’re also experiencing a very typical thing that we special parents go through: this natural balancing act between pushing for potential and acceptance as is. I teeter-totter all the time with this- and I dont think that will change anytime soon

    • It’s like a tight rope, right? We try and try, but half the time I feel like I’m close to falling off!

  7. Yes, right. :)

  8. Can clearly remember how I would love somebody for ever and ever if they took Loren’s drool in their stride and hated them for every after if they didn’t. :-) One guy was a paediatrician… Said “please don’t get his drool on the sheet of the bed”. Needless to say, we didn’t go back there! And the lady from the CP association had such a weird way of speaking on the phone that I found myself quite irritated with her. Upon meeting her, of course, I realized that she had CP… Felt very bad. Charlie is only little now, of course. I let Magnus also get away with lots of socially inappropriate things just because… Maybe it’s not always right, it simply is a fact. But yes, later on you will find that sweet spot…that balance. And so will he.

    • I’m glad to hear that I’m not the only one who lets their child get away with things. I am hoping for the sweet spot–he really is pretty observant and I know he’ll figure things out eventually.

  9. Ryans way of saying hello is taking your hand and putting it up to his cheek and leaning in. He will do this to perfect strangers who are just standing in his vicinity. He will also reach out and touch poeple, just yesterday i averted a touch on the woamns butt who was standing in front of us in line. I understand your frustration, Im teaching him ‘dont touch” and he seems to be getting it, but hes also non vebal and his way of saying hello is the only way he has :( (and i also think its quite cute)

    • It’s a fine line, isn’t it? Charlie doesn’t usually go for perfect strangers, but if you are engaging him, he will respond in his way. It’s actually a big step for him socially and I hate to squash it.

  10. Clearly the woman, if disabled, wasn’t sure of herself. If I had a disability and met someone similar I would totally say “Hey I’ve got that too! No worries!”

    Charlie is 3. Enough said.

    Maybe I’m just annoyed by the situation. After all, Caleigh did lick and chew on a bag of pasta while at the grocery store today and I didn’t stop her :-)

    • Well, I’m going to assume that her disability also affected her mind. And kids chewing on stuff in stores? Please. You’re going to pay for it–it’s yours.

  11. You look so incredibly cute in that picture!

    • Hmmmmn. . . since I’m not in the picture, I’m going to assume you’re talking about Charlie, and yes, he is pretty dang cute if I do say so myself.

  12. I can’t help it…I do try to be extra engaging to kids/people with disabilities (if you can tell, anyway)–but only if I’m close by to make the effort. There’s a guy at work who has CP–he’s extremely smart, apparently engaging (and always surrounded by women), and speaks at least 3 languages. But the opportunity hasn’t come up for me to meet him…but I really want to talk to him, about living as a child/adult with CP. I’m trying to be patient…b/c I don’t want his obvious gait to start our conversation.
    With kids, E is very open, and we talk about “hey, we have braces like yours!” or if E asks “why that person has a wheelchair” I say very openly that it helps them get around, much like her old walker or crutches. If it comes down to drool–normally I don’t mind, but I’m a compulsive hand-washer. I hope that’s not offensive…but if it’s not my own (and frequently, even if it is) it’s always a quick trip to the sink.
    I’m not sure where the happy medium is…I guess I think that the lady approaching Charlie was trying to be nice and reach out, but it didn’t end up the way everyone wished it would.

  13. Miriam McClure says:

    Katy,
    I too struggle with this decision. Bridget is OVERLY social. Everyone we meet is now a new member of our family. She has no radar, no sense of danger or dislike even. She loves everyone equally and fully and it is one of her most beautiful and endearing qualities. I often wish more people were as open and trusting as she is. But as her mother, I realize the very real dangers presented here. Strangers are strangers and she has no sense of this. The issue comes in trying to explain “the bad guys” vs “the good guys”. Because Bridget does not see the gray areas here, nor does she understand them, I do not want to frighten her to the point that she closes off emotionally and socially. If you, or anyone else, has a suggestion, it would be much appreciated.

    Miriam