The Agony of Anticipation

Charlie walking (walking being a time when he rarely expresses the agony of anticipation)  Starting when Charlie was around 3 years old and for many years and for many years after, whenever he made the slightest peep or sound—whenever said a word or some approximation thereof—we immediately honored his effort to communicate and provided whatever he was asking for. If we couldn't figure it out (it took me some weeks to figure out "wowos"), we'd provide super-positive (and near-immediate) cheering, verbal praise, a veritable circus if Charlie produced a string of words. 

This has remained pretty much our habit on hearing Charlie "use his words." I know we're fortunate that Charlie can talk at all; hence our habitual promptness to attend to whatever he's saying, always with the fear that if we don't respond to his talking, he might not do it. 

We're as grateful as ever that Charlie can talk. But lately I've started to rethink our responses to his verbal requests. Since last summer, Jim and I have noted more and more—slowly and very confusedly at first—that often when we got Charlie what he was asking for (usually food), he'd often:

  • not eat the food.
  • have the food or whatever and still be anxious to the point of having really difficult behaviors involving swinging his head around

Further, there have been a couple of times in the past few months when, en route in the car to getting whatever Charlie wanted to "order to go," he'd completely dissolve into anxiety, difficult behaviors, and, well, the rest of the day was spent cleaning up, walking very fast behind a crying boy, and wishing morning of the next day would come soon so we could call the neurologist. 

Finally, it started to occur to Jim and me, maybe Charlie doesn't really want what he's asking for? That he wants something, but he doesn't know the words to use, and so is just asking for the same old things that used to comfort him in the past but aren't what he wants now? That his insistent, repetitive requests are fueled by obsessive urges beyond his conscious control?

When I brought up this phenomenon of Charlie asking for things but not really wanting him—of the possibility that Charlie's words don't always match the ideas in his mind—with one of teachers at his former school, the answer was "we always honor what Charlie says." But what if (I wanted to ask, and chose not to, as I didn't feel the conversation with that teacher was going anywhere) Charlie had grown beyond the words he can use and was groping, and finding himself majorly unsuccessful, at communicating in the way we and all his teachers and therapists so long encouraged to—to talk.

Lately Jim and I have been trying the unprecedented tactic of not always acceding to Charlie's requests. I think we have tended to always jump to do what he asked out of the sense that if we didn't, there'd be more "behaviors." Having seen the exact opposite happen (get Charlie what he wants and see plenty of "behaviors"), it seemed reasonable to try a different response. 

And so when (as he did yesterday) Charlie pointed right and said "that way, that way" ardently as we stopped at the exit of the Big Autism Center's parking lot, I said we needed to get gas and turned left. He was fine with that and reached into the back of the trunk to rummage in a bag of groceries. As we drove home, he continued with more "that way" and "this way" requests and sometimes I turned as he directed, sometimes not. Later in the afternoon Charlie said "I want orange" (a reference to the rice in a burrito) and "order to go" and I said "yeah" and left it at that. Finally he asked to go to the little local grocery store where the incident of the red brownie box had occurred. I said we still had to let some time pass before doing that again.

We were again in the car. I drove into our driveway and Charlie said "No stay in the car," and got out with a smile. He took my keys and opened the front door and ran up to his room to relax.

Things are pretty predictable at home and there's no need for all that agony of anticipation, for having to walk in stores with fluorescent lights and creaks and burrs and other noises (crying babies). Sometimes I suspect Charlie forgets that it's nice just to be home and not on the go, and not getting anything (plenty enough in the cabinets and fridge), and being able to stretch out. Sometimes I think it's that he needs to rehearse the whole litany of options before he can figure that out. 

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Comments
18 Responses to “The Agony of Anticipation”
  1. emma says:

    I guess the teacher was still trying to “model” a literal use of language, hoping the consistency would end up with him using the language in the appropriate manner/context?
    Both my son and the son of a friend of mine (who also has Angelman Syndrome) use language (not necessarily speech) “generically”, often dependent on situation. A picture of a drum can mean several things to Dimitri. I feel at some point you have to relax the desire for language to be “appropriate” in favour of being functional for the individual – even if it’s idiosyncratic.
    “that way” could just be indicating that Charlie remembers the route from a previous occasion not a request to go, but more of conversational comment? Which is great!!
    It is nice to just relax at home sometimes!

  2. Regina says:

    ‘Guess it depends on whether it’s a mand, a tact, or an idiosyncratic form of both or neither.
    Did anyone ever get back to you on AAC or other functional communication system?

  3. Elise says:

    Sounds like you are letting Charlie grow and develop like the adolescent he is.Adolescents all change their world. You are teaching him that he can change his routine and search for new things and it will be ok. Routine is hard to break but he will eventually get it and truly reveal in his ability to reorganize as he goes. It will help in his autonomy.I am sure in your hands he will do fine with it.

  4. a parent says:

    The word around here that has too many meanings is “No!” It seems straightforward enough, but it can mean “ok, but I’d rather not.” or “why?” or “let me finish this up first” or “I’m getting very frustrated” or some sort of 11 year old boy anger towards parents or just “no”
    Never a dull moment.

  5. Yes, yes, we did the same with Jack when his language emerged. Problem was that his language was mostly repetitive and not functional. Now that he can explain himself, what I thought was a request was trying to initiate a conversation and he didn’t have the right words.
    I think you are exactly on track. And what Emma said. That maybe he’s trying to say “we went that way yesterday” or like Jack says “one time we went that way.”
    Yay!

  6. Amanda says:

    It is so important that you are honoring what he is saying with his behaviour, as behaviour is communication (which it so often is with our children). As with what you have written here, I often notice with my daughter that what she expresses with her words is not necessarily what she is trying to articulate, even though she has a good vocabulary – behaviour is often the language we listen to.

  7. Louise says:

    The key phrase here is “we honor his words.” Did the school say what they meant by that? Honoring words can mean acknowledging them respectfully, but still without complying. We all want acknowledgment from someone when we speak to them. But we all have to learn that, more often than not, the other person won’t comply. The only people that get complete compliance to vocalizations are small infants, because those are true needs being expressed.
    It sounds like you are doing just what Charlie needs to bring him into balance with other people in the world. He is learning that his words are part of a conversation, not the utterances of a king.
    Also, you are demonstrating to him that you have faith and trust in him. He needs to know that you think he’s growing up and maturing. You are showing him that you are no longer afraid of him having a storm when he feels thwarted. You’re showing him that you believe he can control himself.
    This is a wonderful development. Thank you for sharing it.

  8. VAB says:

    Our SLP says that much progress is born out of frustration. That is, you learn how to hone message delivery when you are not succeeding in getting your message across. Of course, you have to stay withing the zone of proximal achievement (the goal has to appear at least somewhat doable), but giving kids the chance to struggle is probably part of it, so I think you might be on the right track.

  9. Barbara says:

    Profoundly impressed here (as I often am by your posts) but also with the many profound additions in comments.
    Would you mind if I included this post in my blog carnival “Childhood Expressions”?
    I’ll come back to check. Thanks, Barbara

  10. I says:

    Is there any way that you could try to offer objects/ items to Charlie -once he has asked for something – to see if he will choose the item he has asked for, or something else from the choice? This is known as “teach to the reach” – as sometimes it is hard for us to know what kids want through their speech or even when using AAC (they may give the wrong picture for the item they desire through incorrect picture discrimination) but if they actually reach to grab or take something – then we can be sure that this is the item they actually desire. I hope this has made some sense and may help?
    I guess it may be hard to do with Food – as you won’t want to buy many items from the fast food restaurant. But at home.. maybe if he asks for a drink for instance water you could also have out some milk and juice and see what he takes. If he takes something other than water (despite having asked for water – which is why the drinks were around in the first place!) you can let him have the other drink but say Charlie “it’s juice”- so he hears the word for the drink he has chosen.
    I think this way you would be honouring his words – but also would be giving him a choice so that if he was thirsty from the example above, he would still be getting a drink – but it wouldn’t have to be water -which is the word that came out at the time/ the easiest for him to remember/ the easiest for him to say.

  11. autismvox says:

    @Barbara,
    I’d be honored if you included my post!

  12. autismvox says:

    @l,
    Thanks so much—I like that notion of ‘teach to the reach’ very much—-I guess the problem we’ve had with Charlie is that, now that he’s older, the items he wants aren’t small things one could pick up, but something a lot bigger. I guess the natural thing to try would be photos—we tried to give him different photos of different options to ‘make a choice,’ sometimes with pretty good results, other times with him only choosing a few things over and over, or with him not being really motivated if he couldn’t find those particular choices.
    Charlie is a very hands-on kind of learner .
    You noted that with AAC that the wrong picture might be selected through ‘incorrect picture discrimination’—-I do think this happens with Charlie, that he doesn’t always really know what the pictures or photos are supposed to represent, as he often just focuses on one small part or detail of a picture or photo.

  13. Barbara says:

    Thank you, Kristina! Look for the blog carnival April 25 on my blog.

  14. K says:

    I simply love this
    Kristina – I have loved your writing on 5min for Sp needs

  15. Stace says:

    I found you via the blog carnival … I liked reading this post. I liked how you were reponding to Charlies’ conversation but, not in the literal sense. Very good read! thanks for sharing your bright son with us!

  16. Terri says:

    I think this post is interesting because expressing things that are not wants is an advanced conversational skill. I think you are honoring him/his development through awareness that possibly not all of his speech is a request. Great read–food for thought.

  17. Bethany says:

    I really respect your sense of Charlie and the fact that the words he is speaking are not always matching the message he is communicating. I have worked with children who have limited vocabularies for a variety of reasons, and these phrases that tend to be perceived as having one set meaning do often serve more than one function. For one child, the phrase “all done” could serve as a question, a comment, a request to be finished with a task, a protest of an unpleasant activity, and a command that something cease immediately. “More please” could be a request for more, it could be a comment on her liking something, it could be an initiation to a conversation, and it could be a phrase that she used when she could not find a phrase for the situation – she wants to go outside with the other class and so she says “more please”. Acknowledging Charlie’s speech but responding to his behavior in the situation is definitely still communication.

  18. autismvox says:

    @Terri and Bethany,
    thank you so much!
    I’ve worried that I’m just imposing my own meanings to Charlie’s words. But it’s happened so often that we’ve faithfully followed out one of his requests, and Charlie has gotten very upset–baffling, for sure.
    All those possible meaning of “all done” and “more please” that you note are really helpful; I’ve noted Charlie using “yes” and “I want” in those sorts of ways.
    Thank you again!

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