I have to be very careful not to take advantage of Fishy. This is, of course, a serious risk with all children, especially young ones: adults are bigger, stronger, very convincing, and essentially the gods and absolute rulers of a child’s world. To some extent, this is necessary– it is healthy for a child to have rules, structure, and a sense that someone is in charge of their universe. They need this in order to feel safe, and to have a predictable framework within which to learn and grow.
At the same time, it is equally vital that a child have a sense of some measure of influence over their own lives. It is necessary for the development of a sense of self and autonomy that a child get to develop and express their own preferences. The stage that parents dread most (for good reason), the “No!” stage (a major component of the Terrible Two’s), is also one of the most critical in a child’s life. By saying “no” to a parent’s suggestion or order, a child indicates that she has come to understand herself as separate from the parent, an other with an independent mind and will. Infuriating as it may be to hear “no!” to everything including food, I tell parents to be proud of their kids when they reach this stage.
For this reason, I was relieved when Fishy’s Mommy told me that he sometimes uses the sign “bye-bye” (and sometimes, “good-night”) to indicate that he doesn’t want something or wishes to discontinue an activity. It’s a good sign for his language development, that he’s learning to generalize a word beyond its given meaning. And it’s a very good sign for his psychological development as well, no matter how frustrating it may be for his caretakers.
I worry about Fishy’s sense of autonomy on 3 grounds.
First: his language is very limited. He’s able to express likes and dislikes fairly clearly, but without any specificity– if he’s unhappy in a given situation, he has no way to indicate what exactly is bothering him. When he wants something, he often has trouble indicating what he wants, especially if it isn’t immediately present in some form for him to point to.
Second: he’s so accommodating. Every parent and caretaker loves an easygoing and agreeable kid, but we also acknowledge that too much acquiescence is unhealthy. If you were to meet an adult who happily agreed to anything you suggest, without question, you might worry that they had been abused or brainwashed. I want Fishy to have his own opinions about things. It’s a delicate line to walk, because in his case it’s also very important for him not to refuse certain things, such as personal care and daily medications. He has more safety concerns than many children, and so his autonomy must be limited in some ways. But then, this is true to some extent of all children. I just think it’s important that I never take his cooperativeness for granted. So I thank him whenever he does what I ask him to or allows me to do something to him.
Third: he doesn’t have as much physical ability to resist as other children. He can cry but can’t yell. He can’t run, can’t hide, can’t crawl under his bed to get away from something scary or distasteful. He’s dependent on others for mobility, and for access to things he wants or needs (from toys to food). Not only does this mean that, unlike most children his age, he can’t grab himself a snack or a jacket when he wants one, or run to his parents’ bed after a nightmare, but he also has a much greater incentive than most children not to antagonize his caregivers. If someone storms out of the room on him, he’s pretty much stuck there until they return.
Because of all these things, I am careful, so very careful, not to abuse the power I have over him. His Daddy and I had a good long discussion about how he’s started showing a real interest in exerting control over his own life, and how much we want to encourage this.
So how do we do that? Three main ways.
1) When he can do something, we let him do it, or help him do it.
He cannot walk alone, but if held up by the hands, he can place one foot in front of the other as infants do before they can stand unassisted. So, when possible, we move around the house that way instead of carrying him. If someone holds him, he can open or close a door. Mealtimes are much longer and messier when he uses the spoon himself instead of being fed, but we do that, too, partly so that one day he’ll be able to feed himself alone. When dressing him, we ask him to do the parts he can do– put arm through armhole while it’s held open for him, sit up or lie down as needed, lift legs for diaper change, etc. Daddy says he fusses much less when it’s done this way– he wants to be an active participant.
2) When he can’t be a significant participant, tell him exactly what we’re going to do to him.
He may not get to be in control, but at least he doesn’t have to get taken by surprise. We describe tasks as we do them, and give him warning when the end of something he enjoys is approaching (e.g. “We’re going to be done with bathtime/movie time soon. Over in 3… 2…. 1… bye-bye!”). To some extent, this also gives him the opportunity to voice a protest, or to express eagerness for something we’re going to do. While he doesn’t have a sign, oddly enough, for “yes,” and doesn’t really seem to use his variant of “no” preemptively yet (only to indicate that he wants something to end) I ask him things like “are you ready for lunch?” and pause as though he will answer. I hope that this lets him know that I would value his input if he gave it.
3) We reward any expression of preference, where possible.
We frequently give him binary choices of things– food or drink? This book or that one? Stuffed animal or ball? With the exception of his asking for MOVIES!! when it isn’t movie time, or wanting to play instead of eating at mealtime, I agree to any request he makes, partly to encourage the use of communication, and partly because I know his life is already somewhat unusually weighted towards him not being able to get what he wants (not in all ways, mind you. His life, disability aside, is a relatively privileged one. He’s a lucky kid in a lot of ways, and I hope he’ll recognize that some day). When I don’t give him what he wants, I explain why (a common one is “No, we already had movies today”), or tell him when he can have it (“You can play with L. after you finish lunch” or “We’ll go outside after we put on your shoes”) He always asks for more time in the bath, and I try to give him one or two extensions after I say “we’re done” and he signs “want” or “more,” before I actually insist on taking him out.
I am by no means perfect at this. I do sometimes carry him because it’s quicker or easier. Sometimes I forget to warn him of something I’m going to do. Sometimes I do something for him rather than letting him help me. And sometimes I don’t let him do something on purpose.
For example, he’s learned to scootch himself over to the entertainment center and will grab at the remote and other machinery that provides MOVIES!!… and I usually just grab them back away from him, pick him up, and deposit him at a safe distance where he can’t break the electronics. Part of me hates to do it. He so rarely bothers to go after something completely on his own, and he’s so bright to have figured out that it’s some combination of those items that makes the movies work. And then I go and undo all his hard work in an instant. But– the movie-time rule is a strict one, and he knows it, so I classify this under providing structure and appropriate discipline, and hope like heck that I’m not discouraging him from trying the same tactics to get other things he desires.
As noted in my previous post, I’ve taken on a part-time job as a nanny for a nearly-four-year-old boy with cerebral palsy and hydrocephalus. We just clicked with each other instantly, and since then, his parents have remarked on how good I am with him, how patient I am, how well I seem to understand him in spite of his language delays (his vocabulary consists primarily of 6 hand-signs and the ability to choose between 2 proffered items by pointing to the one he prefers). I feel rather shocked that anyone could interact with him any other way than I do.
I’m realizing, too, that the obnoxious tendency of people to refer to disabled children as “little angels” (or similar) is not always because they assume that suffering makes someone morally superior or because they are looking for a silver lining to what they view as a tragic situation. Children who undergo hardships do, often, seem to develop a certain… fortitude, tranquility, or at least stoicism, beyond their years, an ability to take what comes to them with a calmness and composure few adults can match. They often, too, show a surprising emotional resiliency in the face of trauma. Fishy is among the most cheerful and cooperative kids I have ever met, and a charmer to boot.
(I’ve remarked on his good behavior and sweet temper to both of his parents separately, who both replied with something along the lines of “just wait ’til you see him having a tantrum! He pulls hair and even bites people!” I didn’t have the heart to tell them that I’ve seen– and done!– much worse.)
Case in point: on my second time caring for him, I went along to his doctor’s appointment, partly to keep him entertained, and partly to do any necessary lifting and carrying of him, since his Mommy is pregnant. We played in the waiting room, and he managed not to have a meltdown over the fact that there was A MOVIE!! and he couldn’t stay and watch it (he’s obsessed with movies, and a one-hour-per-day rule is strictly enforced, which means unexpected movie time is Very Distracting).
And in spite of being overdue for a nap, he was reasonably calm and patient through being prodded at and talked about, although the fact that the doctor’s computer screen looked like the thing that provides MOVIES!! resulted in a bit more fussing. Then came the examination of the ears, one of which turned out to have an infection. Mommy and I had to pin him down on the table while the scope went in, because (like most kids his age) he’s prone to sudden unexpected movements. When the scope went in the infected ear, he started howling. I’m told he has a very high pain tolerance, so when he cries, it means he really hurts. Poor kid. Ears are sensitive places.
“All done ouchies! No more ouchies today” Mommy reassures him, and I scoop him off the table to try and calm him down. He grabs at my face, almost knocking off my glasses, and I fend his hands away from my eyes. His fists bury themselves in my hair and yank. Well, of course—he’s in pain, emotionally distressed, exhausted, and has very limited means of communicating this to anyone! I’d probably do the same thing in his position.
So I rub his back and rock him, and repeat “Gentle, please” (a request he understands) 2 or 3 times until his hands loosen their grip, then I thank him, and tell him that he’s done a great job and was very brave. The tears have stopped by the time I get him settled back into his stroller. His lower lip still in a firm pout, he signs “bye-bye” insistently—a relatively rare use of spontaneous sign-language. The message—“I’ve had it with this; get me out of here!” – is so obvious Mommy and I can’t help laughing. “That’s right,” we tell him, “bye-bye doctor!”
He’s cheered up again by the time we get downstairs to the pharmacy. I play clapping games with him while we wait for his meds, and then he gets a dropperful of baby Tylenol, which apparently tastes fantastic, to judge from the expression on his face. He’s cooperative about being stuffed back into his car-seat and driven home, at which point he indicates that he would like his nap now, please (I’ve never met a kid who likes going to bed as much as he does. Unlike most children, he seems to know exactly when he is tired and will sign “good-night!” to request being prepped for bed and again once he’s ready to be put into his crib. I wish the other children I’ve babysat were as sensible!).
I am absolutely… I have to use the term “in love” with this kid. I haven’t felt this way since I was 11 and helped my mother babysit for the cutest little Japanese baby in the entire world (honestly, he was breathtaking), whom I adored so much I overcame my usual unwillingness to come within ten feet of bodily byproducts and learned to change his diapers. It’s now been at least a decade since I changed diapers, and now I’m having to learn all over again. Ah well— life is messy stuff. I’m just glad Fishy’s parents were willing to give over care of him to someone who couldn’t remember which part of the diaper was the front!
I’m generally not much for children. I don’t plan to ever have any of my own, in spite of being prone to occasional ridiculously intense baby cravings of the sort depicted here:http://www.girlswithslingshots.com/comic/gws447/. Not that I mind kids—unlike many people, I’m almost never bothered by their shrillness or level of activity (even when I can’t keep up with them!), and I’m pretty much appalled whenever someone expects them to behave or think like miniature adults. I do not believe children should be still, quiet, patient, or good at remembering/attending to things. I recall being a child myself far too well for that.
I just don’t understand children very well, although I usually get along with them OK. I’m comfortable with them while they’re still too young to do much talking, and again when they are old enough to sit down and have serious conversations about Life, the Universe, and Everything… but I feel pretty awkward around them in the 10 years in between… in part, I think, because I do remember what it was like to be those ages, and I have no idea how I would communicate with that self now—her thoughts and feelings are in my memory, but no longer make sense to me, like the logic of a dream once you’ve woken up. My mind speaks a completely different language now, and I’ve lost my fluency with the previous one.
All of which is a very roundabout way of getting to the point that, to my surprise, I’ve taken on a part-time job helping care for a four-year-old boy with cerebral palsy and hydrocephalus. [I do a lot of nicknaming, and so this boy gets referred to by innumerable variations on his name, plus my standard cute-kiddie terms (munchkin, pumpkin, etc), and Fishy, on account of his passion for being in the water. I’ll use that one to refer to him in my blog, because I want to protect his and his family’s privacy, and this pseudonym at least says something about his personality.]
A few moments of playing with Fishy, and he’s reaching out for me to hold him. And then he doesn’t want me to put him down. I spend much of the rest of the party with him. “You want to babysit sometime?” his Mommy asks, half-jokingly, “He really likes you.” “I’ll think about it,” I tell her. And I do.