Home > Fishy, Special Needs Childcare > Fishy and Autonomy/Sense of Self

Fishy and Autonomy/Sense of Self

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.

  1. K.
    September 3, 2012 at 2:50 pm

    Oh wow. I want to link this everywhere. Because so much of the writing pertaining to working with young children with disabilities is focused on compliance. And this is an excellent description of not only *why* it needs to be otherwise, but *how* it can be.


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