By the time I got there, Alex was crying.
It began, as far too many of these encounters do, with Julianna. She took advantage of the fact that her parents were caught in conversations after church and helped herself to someone else’s juice cup. We saw her, but the people talking to us were not to be sidetracked. “Alex,” Christian said, “go get the cup away from Julianna.”
I shot Christian a glare; it’s totally inappropriate to saddle Alex with this task—for one thing, because it encourages his bossy side, but at a more basic level, Julianna doesn’t recognize his authority and it always gets ugly—but I couldn’t get out of the conversation. (I mean I couldn’t get out of it. You know the type.)
By the time I got disentangled, Alex was huddled on the floor crying with a grownup leaning over him and Julianna continuing to drink someone else’s juice in blissful…or should I say willful…unawareness of the drama playing out behind her back.
The Julianna damage was done, so I focused on Alex. I drew him into a hug, comforting him, whispering in his ear that he was in the right, no matter what the adults said.
The man looked abashed. “He tried to take the juice from her,” he said, “and I told him it would be nice of him to let her have it.”
How can I respond? He doesn’t know the history of the Julianna-versus-the-doughnut-war. For several weeks this summer, the choir had to warm up in the room where coffee and doughnuts are served after Masses. No matter what we did, she always managed to figure out when I was focused on conducting, and slip in to steal a sweet treat. Once, we managed to keep her out of them until we were packing up to head over to church. By then, the last Mass had let out and the line of people waiting for doughnuts had begun to file past the boxes. While we were stacking books and answering questions, Julianna walked straight to the front of the front of the line and grabbed a doughnut right in front of an adult…WHO LET HER DO IT.
The next week, we resolved to win the battle. We dragged her away from the table three times. She knew the rules, and was responding with a petulance that proved it. And yet the fourth time we looked her way, there she sat, eating a doughnut with one of the women staffing the table, who (it transpired) had given her one despite Alex protesting that she wasn’t allowed. (A child with special needs is never as clueless as they want you to think they are.)
Are you getting the idea, people? THE GROWNUPS ARE THE PROBLEM.
You think she’s cute, and she is. You feel sorry for her, and you decide the rules don’t apply because she has Down syndrome/cerebral palsy/autism/fill in the blank. You don’t want to be a jerk to a child with special needs, or you think they don’t understand, so you treat them as if the rules that apply to everyone else don’t apply to them, because of their disability.
It sounds ugly, but be honest. If a “normal” child came up and tried to butt in line ahead of you and steal a doughnut, would you let him? If a “normal” child took a cup of juice from your table, would you chuckle and say “oh, how cute”? No way! You’d be firm, tell them “no,” and possibly mutter about their parents.
Think for a minute. What if my child had celiac disease? What if she was diabetic? Forget all that, let’s just talk about life. If you decide that standards of behavior don’t apply to kids with special needs, how are they supposed to turn into anything but self-centered jerks who use manipulation and a victim complex to make life living hell for everyone around them?
Kids know better. I’ve yet to see a kid that let Julianna get away with anything. Kids come to the parents and say, “Miss Kate, Julianna pushed me!” exactly as they would if the name was “Alex” or “Nicholas.” No, it’s the grownups who are the problem.
I’m fully aware that as Julianna’s parents, it’s our job to teach her acceptable and unacceptable behavior—not yours. Believe me, we’re working on it. But you make our task far more difficult when you apply double standards in the way you treat children. You add bricks to the wall that separates her from integrating into society. Because though you may think you’re acting with compassion, other children see only injustice.
And they’re right.
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Kathleen M. Basi 
Most folks aren’t going to say anything even to a ‘normal’ or older child. On the few occasions I’ve said something to the youth with a mountain of cookies on his plate at a church event, I’ve actually had the parents angry at me for disciplining their child…..
so chances are unless I know you and your rules, I’m going to do nothing
THIS! I had to chuckle and forward it to my mom. We have been fighting this battle with my youngest sister with cerebral palsy. I’m glad people love her almost as much as we do, but really, church fam – she has to obey the rules too! My mom has finally started addressing it outright. “She’s 7-years-old. Would you let Trent [our 7-year-old brother] do that? Then don’t let
her.”
Your kids are too cute. Just in case you forgot, and all. 😉
I have to say, I agree with Renee. If I don’t know the parents and the parents’ rules, or what the parents standards are for acceptable or unacceptable behavior, I will not say anything to a child. The child may actually be doing something that the parents approve (or at least are indifferent toward), in which case the problem, again, is not the child, but the adults. Saying something to the child is only going to confuse him/her more. “If a ‘normal’ child came up and tried to butt in line ahead of you and steal a doughnut, would you let him?” You asked us for an honest answer. My honest answer is, “Yes.” I don’t see it as that big of a deal.
What’s more, in situations in which I do know the parents and know the parents would find the behavior unacceptable, I would probably inform the parents of the behavior before saying anything to the child, and let them deal with their child’s misbehavior. That’s because I would want to be informed of my children’s misbehavior so that I can manage my children myself.
The only exception to my practice of “non-interference” is if I see a child becoming physically aggressive to another child. I would put a stop to that, but probably not by reprimanding the child who was becoming aggressive, but by removing the child who was the object of the aggression.
An important point to think about here is that what you’re defining as misbehavior for Julianna is your standard of acceptable and unaccetable behavior. Not every person or every situation has the same standard as you. For example, in our Church it’s pretty common practice that the kids get served first. Letting Julianna go to the front of the line would be perfectly acceptable at St. Andrew’s. So in this particular instance, the standard of unacceptable behavior is defined by your judgment as her parent and your Church’s practice of distributing the doughnuts. Taking the drink from a table is a different circumstance. When I’ve been in social situations, children will ask if they can have a drink from what is at our table. My normal response is that they should ask their parents if it’s ok.
Which brings me to what I think is the real crux of your point in your article. It undermines the authority of the parents when an adult gives something to a child without asking the parents first, or does not uphold a standard of behavior that the parents believe is acceptable. When Alex was sent over to redirect Julianna, he was given the authority of his father. When the adult then redirected Alex, Alex’s authority, given to him by his father, was undermined. I can’t help but wonder if that’s similar to the way you feel when your standards of acceptable behavior are undermined when adults act towards Julianna as you describe.
I never give anything to a child without first redirecting the child back to his/her parents to get permission. I also do not impose my standards of behavior on children. Instead, I will inform the parents of the behavior and let them decide if it is acceptable or not. If I find it intolerable, I will remove myself from the situation.
This turned out to be a lot longer response than I intended. Sorry about that.
You hit the point dead on at the end: it’s confusion of authority. The thing that people aren’t usually thinking about is that although these issues are important for any child (authority, standards of behavior, etc.), for a child with a developmental disability, the learning curve is much steeper. If someone undermines authority or offers a conflicting standard of behavior to Alex or Nicholas, we can correct that quickly. Julianna, OTOH, takes hundreds of repetitions to “get” a lesson. That is not an exaggeration, unfortunately; it is a researched fact shared with us by a therapist early-on. I don’t remember the number, only that it would take at least 2-3 times more repetitions for Julianna to learn *anything* than it would take her brothers. Confusion, in these instances, is far more disruptive than it is for a typically-developing child.
I can see how people would let a kid butt in line, typically-developing or not. The rest of it, though, I don’t buy. There are standards of behavior that are pretty universal in our society. In no family is it actually acceptable for a kid to steal someone’s cup. The parents may not choose to correct it, but that doesn’t mean they think it’s okay.
I go back to a post I wrote several months ago: https://kathleenbasi.com/2011/05/19/it-takes-a-village/ We have a tendency to be really hands-off with other people’s children, and yet it’s really unreasonable to expect that people can be successful parents all by themselves. You need the support of your parents, grandparents even, friends, and community. I’m sure Renee’s right, and there are plenty of parents out there who will get bent out of shape if someone dares to correct their little angel. But for every one of those, I’m sure there are an equal or greater number of parents who are aware of our own limitations and grateful for the support.
I am probably one of few parents that has no problem telling a child that what they are doing is rude. It seems like parents these days are not instilling proper manners in their kids, so I feel no guilt or shame in reprimanding another person’s child. I would never let a child butt in line, that is just rude. With allergies to all foods in the past couple decades, I would not just let a child younger than school age, just help themselves to donuts or any food without consulting the parent first. I realize that most parents are not like me though. I have a niece with autism and we treat her just like a “normal” kid, she gets reprimanded for the same things her non-autisic sister gets reprimanded for. I do agree with you that it is the adults that make parenting to special needs very hard. This is by far my favorite article you have written in a while. 🙂
I completely agree that it takes a community to raise a child. The conundrum is that when you delegate authority to discipline your children to other members of the community, you also delegate the authority to decide what behaviors should be redirected and which ones shouldn’t, and not everyone is going to share your standards. What’s more troublesome to me is that in this, we also delegate authority to choose the method of discipline. I will not allow certain members of my family babysit our children because they use spaking as a method of discipline. It becomes a balancing act between respecting the authority of parents and helping with the socialization of the children. It may seem like I’m hands off concerning other people’s children, but the balance between those for me is always to defer to the parents.
Your post reminded me of this:
http://showerheadsandhairdryers.blogspot.com/2011/07/my-daughter-called-me-sinner-today.html
The mom is my former area director for Intervarsity.
This post is apropos to me right now, as I’m struggling with how much input I should give my single-mom best friend on disciplining her only child, a 6-year old girl. The mom, who is often at her wits end, says to me, “If you have any suggestions on how to handle these situations, please tell me.” But I and my other kid-less friends feel it’s better to keep our mouths shut. Constructive criticism might be appreciated in some situations, but the topic of parenting seems particularly sensitive.
On the one or two occasions that I volunteered suggestions, I prefaced my statements with the words, “My mom used to…” or “I once saw someone…” so that I don’t come across as thinking I know *anything* about parenting; and while I know there’s a difference between child rearing and child caring, I can’t help but feel that my babysitting jobs for younger brothers and neighborhood kids, time employed by the YMCA, and courses on identifying and preventing child abuse counts for something slightly north of *nothing*. (My suggestions, by the way, were met with responses such as, “I already tried that once; it didn’t work.”)
Don’t get me wrong: if the child is endangering herself, others, or property, or if she’s simply being more annoying than I can handle (screaming loudly enough in a small car to make my ears hurt, for instance), I will speak directly to the child. And sometimes if I sense that mom is fed up, I will lead the child away from the situation and distract her and give mom a few seconds of peace. Other than that, I stay on the outskirts of disciplining the child.
My best friend and I have found ourselves in similar boyfriend-less positions this summer; therefore, we have lots of time to spend together. But here’s the thing: spending time with a child who ignores her mother irritates me to no end; I find myself making excuses NOT to spend time with my best friend because of the child.
Therefore, I’m curious what other mothers think of their single friends making suggestions about their parenting. Thoughts?
You are in a tough position, b/c you’re right, suggestions from those w/o children often do irritate rather than help. Although the reply you said you get, I know we say that to other mothers, too. I think the trouble is not with the suggestions or the person offering the ideas. I think it’s when you’re at your wits end and you’ve already racked your brain and tried everything you can think of, and then other people (parents or not) offer the same suggestions you’ve already tried. What do you think, folks, am I right?
I want to be clear that I’m not trying to dictate a way for people to act in ordinary situations with typically-developing children. My point is specifically about kids with special needs. A person may think he or she is being nice by offering a little “Downs kid” something she really wants, but it never occurs to them that they’re causing all manner of problems by not asking the parents first (Jamie’s point). And although the same thing *might* happen with a young child without a disability, I really don’t see it happening to the extent that it does with Julianna. With my boys, people ALWAYS ask. With my daughter, almost never. Which is why I want people to be aware of this, and why I wrote the post.
Got it. You are correct; I understand the point you were trying to make and I sort of took it in another direction. Sorry about that. But I can understand the dilemma you’re in and will consider that if ever I’m in that situation. I bet it’s safe to say that parents who have BOTH children with special needs AND “normal” children feel the same way you do…but I wonder how parents with ONLY one child–a special needs child–feel about discipline?
Hey, I’m glad people took this in any direction–I just wanted to clarify my intentions in the first place. 🙂
I sincerely hope I didn’t come across as dismissing your point that Julianna receives special treatment, or is treated by a different standard for socially acceptable behavior. Believe it or not, I already here this from family members when they discuss Nathaniel. Nathaniel is 6 weeks old today, been home for 1 week from the hospital, and already his grandmother and other family members are talking about “protecting” him. The one thing that has been repeated more than anything else since we found out that Nathaniel has hemophilia is that we treat him like our other children. His “normal” should not be that different than Jacob’s or Caitlin’s, according to experts from the Hemophilia Treatment Center. Yet, we’ve already had to take on the notion of “protecting him” from such things as jumping on the furniture or riding his bike someday. He’s just started saying “a-goo”, but there are certain members of the family who are already plotting on how to get him “what he needs to be safe.”
I certainly understand what you’re saying about double standards.
I’m sure you have already had people worrying, Jamie. I’m not surprised at all. I constantly get irritated when family members marvel at how “well” Julianna’s doing, when they would never think of mentioning anything similar for the boys. The intentions are absolutely honorable in all circumstances–just sometimes misguided, or indicative of an unconscious “prejudice.” I put that word in quotes, b/c it’s inflammatory, and I don’t want to imply that anyone thinks less of Julianna–only that they don’t necessarily recognize that they are setting the bar too low on an assumption that she’s not capable of meeting a higher one.
Anyway.
I like you coming over to comment, b/c you always challenge me. 🙂
This is a great post. Very eye-opening and important!
I don’t have kids and I almost ALWAYS get in trouble for trying to “tell people what to do” about their children when I have “no way of knowing what its like”. So I just butt out now. And believe me, I have wanted to say, Hey, you are being rude, but it’s really not my place. Unless it’s a good friend of mine’s child and I know what her rules are, I keep my comments to myself.
I appreciate your point on treating a special needs child differently though. I guess if it is hard for me, or people, to discipline other people’s “normal” children, it is even harder to do it if they are special needs. Nobody wants to feel like they are being mean.
Kyria, that’s exactly right. I also think that the separation between special needs and typically-developing population makes people much more skittish about dealing with those who are “different.” But then, that just adds to the separation. Because there’s so much more going on in their heads than what they are usually given credit for, and they know how to work the system–which, because people don’t give them credit for it, allows them to be more manipulative than the ordinary child and get away with it.
I do sympathize with you…we parents are bad enough at badmouthing each other, not to mention those who don’t have kids at all. (Sad but true.) I just want people to be thinking about it so they’re prepared when the situation arises.