Easier Said Than Done – Rules for Interacting with Children (and Adults!) with Disabilities
When I first met Tangles, as with every new disabled child I meet (really, I suppose it should be every child, period!), I made myself the following list of promises:
1) I will always speak to her as though she can understand me, no matter how little evidence I have to support that hypothesis. Additionally, I will speak to her with respect and courtesy.
2) I will always act as though she can understand anything I say in her presence.
Granted, I’m lousy at this one, in the sense that I tend to forget myself and swear around kids, or talk to their parents about adult topics that may not be appropriate. I may also talk about the child in front of them, but never, ever, no matter what, to say something negative or complain about them. Questions, praise, and purely factual stuff only, and even then, I probably do far too much of it.
Don’t underestimate the importance of this rule. Children already worry enough and blame themselves enough. Remember how you felt realizing that you made your mother cry or caused your folks to fight? Remember how much the things they said about you in moments of anger or frustration cut to your heart? If you ever doubt that disabled children have these same feelings, go read this. Now imagine, on top of that, not being able to apologize, to ask for reassurance, or even to remind your dad that you love him. Think about what growing up that way could do to a child’s sense of self-worth. In the film “Wretches and Jabberers,” Tracey, who first learned to communicate by typing in his 30s, recalls that the first thing he typed was to tell his mother that he loved her. She cried. When I saw that part of the film, I cried too.
3) If she does not do what I ask her to, I will assume that she either cannot or has a reason why she does not want to (and that this reason is valid, whether or not I understand or agree with it.) While I may have to insist that she does something she doesn’t like, I will never accuse her, even in my mind, of being “badly behaved,” “non-compliant,” “stubborn,” “defiant,” “oppositional,” or “manipulative.”
I’ve known willful children– and I think, “good– they will grow up to be strong-minded, assertive adults.” All children have some inherent limitations in their abilities to be patient and thoughtful, due both to their inexperience with the world and to the fact that their brains are not yet fully developed. And all children are manipulative, for the simple reason that they have far less power than the adults around them, and so have very limited ways to gain access to the things they want and need. I know that children can acquire some very bad habits– such as selfishness, excessive impatience, and the tendency to whine or throw tantrums. I know too that bad habits in children are generally the result of their caregivers responding incorrectly to their wants and needs, including the need for limits, rules, and structure. Some children, more than others, seem to enjoy getting strong emotional reactions from their caregivers– including reactions like shock and yelling– but those needs for emotional input can be acknowledged and met in positive ways, such as giving the child more stimulating experiences.
4) I will not force her to do anything, or do anything to her, without good reason. Additionally, when I need to do something to her or make her do something, I will explain both what it is and my reason for insisting on it.
I think it’s a good list of rules. As I was about to find out, though, those rules are easier to write than to follow.
And as it has gotten to be 1:30 AM, I’ll have to continue this narrative tomorrow.