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Bee-bee-beeeee

He’s one of those kids that people (myself included, I’m embarrassed to say) inevitably describe as being “in their own world.”* But that’s not true at all. Better to say that he perceives and interacts with the same world we do… he just does so very differently than most of us. We don’t “speak” the same mental language, and many things that most people take for granted just aren’t on his radar. I suspect that plenty of things that are obvious to him pass us by completely, too. He doesn’t often make eye contact, rarely looks at something that someone is pointing at. He doesn’t do social smiles, or acknowledge when people arrive or leave, or have any verbal language. It’s hard to remember sometimes that he’s actually very observant and quite clever.

He’s a musical kid. Hums a lot, whistles better than I do, and does some reasonably good bird calls. He vocalizes a fair bit, especially when happy or excited. But he doesn’t use many speech sounds, and almost no consonants. With one exception. One of his happy verbal stims goes something like this: “bee-bee-bee bee-buh-bee…”

I wondered about this for a while. Why “bee?” Granted, “B” it is one of the early consonant sounds babies learn, but usually after “Mama,” at least, and it’s usually “Bah” rather than “Bee.” “Gah” and “Dah” are also learned early, but I’ve never heard him say either of those. When the most likely answer finally popped into my mind, I couldn’t believe it took so long for the idea to occur to me.

See, he’s from a multilingual household, and the most commonly spoken language at home is… Arabic. Where the standard term of endearment is “habibi” (ha-bee-bee), which means “beloved.” His parents and grandparents and so on use his name as well, of course, but very often he is addressed as “habibi,” especially when people are happy with him.

It’s wonderfully endearing to me that, out of all the things he hears on a daily basis, this is the one he has chosen (consciously or not) to mimic. Maybe it’s his way of saying “I love you” back to his mother, to his family, to the world. I don’t know. But it sounds even more joyful now that I know its origins.

Bee-bee-buh-bee indeed, dear child, bee-bee-beeee…

 

* Autism expert Judy Endow writes on why she dislikes that phrase: http://www.judyendow.com/autistic-behavior/we-are-not-in-our-own-world/ http://ollibean.com/autism-and-measuring-normal/

 

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A Day at the Beach in Autism-Land

April 10, 2015 1 comment

Once upon a time, I realize sadly, I would have thought there was something “wrong” with a child like this one. I would have been ill at ease around him when I was a child myself. Painfully timid in my own childhood, I had almost a phobia of anything that stood out from the normal and drew attention to itself, completely unaware that I was one such subject myself. I didn’t “speak” fluent neurotypical then, but neither did I speak autistic, at least not in the sense of being able to relate to most other autistic people (though I suspect one of my few childhood friends would have qualified for a diagnosis of what was then called Asperger’s syndrome).

Now I speak passable neurotypical, and quite diplomatically at that. I also speak passable autistic– perhaps not with perfect fluency, but enough to make friends among its native people. Neither language requires much conscious effort on my part, except in extreme situations. “Speaking” is a metaphor here– it’s much less about verbal language than about mental and behavioral language. Perhaps I bridge the gap so well because my brain’s native language is verbal– like that of most neurotypicals– but its syntax and vocabulary are closer to autistic.

Language is on my mind because I think my young companion at the beach today speaks a very different neurological language than I do. His mind, I suspect, does not yet think in words. He seems to understand words that others say, although I have yet to gain a sense of his level of language comprehension. He shows no interest in words, so far as I can tell. I should mention that today was only my third time working with him, but within a few hours of our first meeting (when I introduced myself by reassuring him that I wasn’t there to make him sit at a table and do things), he identified me as an acceptable adult to trust and ask for help with things.

A neurotypical observer of us at the beach today would probably have identified little interaction, much less cooperation, between us. The same observer might not have known we were playing and having fun, except by looking at our smiling faces. They would have seen, mostly, a young woman meandering along the beach with an elementary-school boy, about 1-3 meters (yards) from him at all times.

The boy jumps on the wet sand at the water’s edge, squats down to gather a handful, tosses it to himself for a few minutes, repeats. He stands, lopes a few feet down the beach. Bends backward to stare at the sky. Stands with his head and leg angled to one side, like a dancer caught mid-turn, looking down at his own heel. A phrase from a piece of autistic performance art comes to mind– “stiff and stimmy, stiff and stimmy.” One hand flaps rhythmically, sometimes hanging down loosely from the elbow, at other times up near his face, his elbow bent. (I wince, recalling that as children we used that gesture as a derogative  to indicate intellectual disability). He dashes into the surf and back, jumps, twirls, crouches, kneels, kicks water, scoops sand, again and again and again. Sometimes he brings sand to his face, smells or tastes it carefully. He is smiling broadly almost the entire time.

The boy is never silent. He shrieks, growls, makes sound effects, gives bird calls, vocalizes vowels, and hums– sometimes a few notes, sometimes a recognizable line or two from a song. I repeat a hummed phrase with him maybe 10 times, obviously knowing it yet unable to place it, until I finally recognize it as a middle line from a Christmas carol. Over perhaps an hour, I recognize half a dozen songs– children’s songs, mostly, in both English and French– all hummed perfectly in tune. He does not say or sing any words.

I walk along the beach near him, not crowding. I stoop to pick up shells, rocks, or seaweed. I draw patterns in the sand with my hands and feet, dig holes, make piles and shapes of sand that the boy often comes over and takes from my hands to play with. Sometimes I hum what he is humming, or join him in a yell of excitement or joy. Sometimes I hum or sing something else. Often I am quiet. I, too, am usually smiling.

Here’s what a casual observer does not see: every ten minutes or so, the boy looks up at me, as if making sure I’m still nearby, and smiles when his eyes meet mine. Although he walks looking at his feet, he manages not to bump into anyone on the busy beach. Only once or twice does the water and sand he is flinging about come near to hitting anyone. On those occasions, I come over, tap his arm, and remind him to please be careful not to get sand on other people. When he wades deeper into the waves, with me walking alongside him, he comes over to hold my hand, not letting go again until we’re back in the shallows. He doesn’t try to go in the water any deeper than where he can stand firmly, a level of safety-awareness that even many neurotypical children lack. His mother comes over at one point and asks if he is ready to leave. He gently but firmly pushes her away. At one point he takes my hand and pulls it toward his jacket. “You want me to take your jacket off?” I ask, and take hold of a sleeve. He pulls away, then brings my hand to his jacket again. “You want me to zip your jacket up?” I guess, and he stands still while I do so.

Here’s what I almost miss: a number of minutes after I pick up an interesting rock, he picks up a rock. He tosses it to himself for a while, then hands it to me to hold. Usually, as I draw patterns in the sand, he ignores them. Sometimes he comes over and steps on them. I wonder if perhaps he wants me to stop, but then I realize he’s just trying to experience them in a tactile way. Much later, he begins using his own feet to make patterns in the sand. I assume this is something he’s always done until his mother expresses surprise. I realize he’s been paying close attention to me all along.

From time to time, I tap his arm a few times to get his attention and point out something– a kite, a pelican, a crab– or make a request (“let me take your shirt off before you get in the water,” “We’ve gone far enough– let’s head back towards your Mom now,”).

I learn about the texture and feel of the sand in great detail. The warm, fine sand that lies dry above the tidemark. Sand swirling in the water against my legs. Watery sand between my toes as the waves retract. The innumerable textures and behaviors of sand between wet and dry– it’s fascinating stuff, really, the physics of how it moves and dries, clumps and scatters and melts. I stomp, place my foot lightly, press down, try to make different depths of footprints. The sand here is wonderful– white and black grains of slightly different weights that settle into beautiful patterns, and golden flecks of mica throughout both.

It’s a perfect afternoon, spent with a perfect companion. I wonder many things, about what he knows and doesn’t, when he will acquire certain skills that most children his age perfected long ago, when he will begin to communicate in words. I wonder what occupies his thoughts, remembering my own childhood hours of telling myself stories as I wandered back and forth in the yard. I wonder what it’s like to think in something other than words. I wonder what kinds of things he should be taught now, and how best to convey them, and how I would know whether or not he understands. But I have no fear– either of him or for him. He is obviously intelligent, happy, alert, and generally cooperative and considerate when he is aware of what others want from him. I can’t understand how anyone could think there is anything “wrong” with a child like this.

Shifting Focus: Autism, Understanding, and Obedience

December 14, 2014 5 comments

The literal-mindedness of autistic people often requires that we show a certain extra care in the way we communicate with them. Particularly as children, they have not yet learned many of the social and behavioral rules that go unsaid, the ones most other people generally pick up through observation by about age five, the ones that become so obvious that before childhood ends, most folks have stopped even being aware of them as rules. Even among typically developing children, I often see parents get frustrated with their children for asking questions whose answers are assumed universal by adults. I am always sad when I see a parent snap something like “what do you think?!” or “you know better!” at a child who is asking an honest question. (True, sometimes children do ask questions who answers they know perfectly well, but that’s a different story. I hate, too, when a parent says “stop that!” to a young child without specifying what “that” is. So unfair! But I digress).

The other day, I was working with an autistic client, an elementary-school boy. We were at a fountain, and (not surprisingly) he showed every sign of wanting to play in it, which would have been a bad idea in such cold weather.

“Please don’t get your clothes wet,” I instructed as we approached.

As soon as he got close enough, he scooped up some water in his hands and poured it onto his own foot. Deliberate disobedience? Not having attended to my instructions? Lack of impulse control? Or…? A moment later, a thought occurred to me.

“Your shoes count as clothes,” I clarified. And then, because I remembered that many autistic children (as well as those with ADHD and other developmental disabilities) often do better with instructions that tell them what to do rather than what not to do, I rephrased my instructions altogether:

“You may get your hands wet, but only your hands, nothing else.” And he followed this instruction easily.

Now, this child is not perfectly obedient– no child is. He has a mischievous streak, a strong will, intense curiosity, and a frequent tendency to ignore the preferences of his caregivers. But at the same time, I suspect he sometimes gets labeled as disobedient unfairly.

When you give him a rule or instruction, it is common for him to do something that almost goes against the rule, but not quite. Children like this are often said to be attention-seekers, to “like getting a rise out of people,” or to always be “pushing  boundaries” and “seeing what they can get away with.” This puts a somewhat negative spin on the situation, making it sound as if the child prefers to cause a certain amount of trouble. And perhaps at times this is true.

But let me offer a possible alternative explanation.

Imagine a typically developing boy of the same age. His mother sends him out to play on a muddy day with the instruction “don’t get your clothes dirty!” The boy thinks about this for a moment and wonders if the rule applies to his shoes as well. So he asks. In words. Verbally. He says something like “Does that mean my shoes, too?” And he gets an answer.

Such a simple and obvious exchange, we hardly notice it.

But now think of a relatively nonverbal child in the exact same situation. He has the same question in mind, but he lacks the words and the ability to ask the question verbally. He still wants to know the answer. And the only possible way for him to get the answer is to perform an experiment, to try the action that he is not sure is allowed and see how people react. He’s not trying to test limits or get anyone upset or cause trouble– he’s just trying to ask a question (as all children do), using the only method he knows.

So please, think of this possibility the next time you work with a child who seems to be trying to get around the rules or give you a hard time. They may just want to understand better, and it would be unfair to punish them for that perfectly reasonable desire. Please assume, at least at first, that the child has the best of intentions. Be respectful of the fact that they may genuinely not understand, may not have the same basic knowledge about the situation that you take for granted. And please take responsibility for your part of helping the child behave well: be as clear and explicit as possible when setting rules. Choose your words with care, in order to make the situation easier for a child who might be struggling very hard to do the right thing.

Suggested Questionnaire for Healthcare and Related Professionals – please share widely

October 27, 2014 7 comments

[Update!! Those who want a tool similar to this can download one for free from http://autismandhealth.org/%5D

I have heard many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.

If you like this idea, please take this quick online survey!!!

If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word.

https://docs.google.com/forms/d/1JB2s5dQxtZNLxP7CwbPFtQzU4-3QT6htxjYNhNpIssA/viewform

(If you have trouble wti the survey, you can also comment here on facebook: https://www.facebook.com/notes/open-discussion-on-autism/suggested-questionnaire-for-healthcare-and-related-professionals/789224341139804)

Autism and Communication

April 11, 2014 10 comments

I am increasingly convinced that we need to come up with a different set of milestones for how less verbally-inclined people learn language. Over and over, I see studies where researchers and educators work very hard (and not always successfully) to get autistic kids to meet the various stages of typical language development… contrasted with numerous stories in which autistic kids, teens, and even adults finally acquire language skills (verbal or written) in unexpected ways after years of ineffective therapy (well-known examples include Carly, Emma, Tito, Larry and Tracy, and more recently Drew, Mike, and Ethan).

Sometimes, the language acquisition is described as “sudden” or “unprompted.” Other times it is the definite result of deliberate struggle. But in either case, it seems clear to me that the professionals invariably mis-evaluate the person’s communication potential because they are looking for the “typical” developmental stages rather than acknowledging that communication and language skills may evolve along a different trajectory in non-neurotypicals.

My experience with nonverbal/preverbal kids also leads me to suspect that at other times, some of the “typical” steps are present, but in a form which often goes unrecognized. Attentiveness, for example, looks different in an autistic child (or adult!) than a neurotypical (NT) one. A NT child who is listening intently to an adult is generally seated, relatively immobile, and making eye contact, whereas an autistic child giving you their full and undivided attention may be pacing, rocking, or engaged in another physical activity… and almost certainly isn’t letting themself get distracted by trying to stare at the speaker’s face!

I recently got to spend a day with Tangles, after not seeing her in quite some time. Her mother says that she’s making a great deal of progress– trying to do more for herself, eating with utensils (albeit not very neatly), and verbalizing a lot more. I asked if there were any particular “homework” (therapies or programs) for me to practice with her, and she laughed and said “just do what you always do with her. It gets her to talk more.”

That surprised me a little bit, because I didn’t realize that what I was doing with her was anything particularly special. But I guess it is. Here’s the thing: I engage with her. I don’t just talk around her or at her or even to her (although I do all those things at times)… I converse with her. Even if her part of the conversation consists entirely of simple syllables like “ha” and “buh” and “foo.” I listen when she says them. I repeat them back to her, sometimes exactly as she said them and sometimes with variations. I get excited when she mimics my variations or comes up with ones of her own. I did this with Fishy too.

I also do the same pattern of interaction in nonverbal ways, especially with Rhythm. We hold conversations in patterns of clapping, stomping, face-making, or touching each other’s hands. We share attention and direct each other’s attention to things– feeling textures or watching patterns or listening to sounds together. These things are interactions, examples of joint attention, and without them, these children have no reason to even TRY communicating with me.

Think of what we do with babies. We crouch down at their level. We engage in things that interest them– playing peek-a-boo, shaking rattles, cooing in baby-talk, giving them the things they want like food, warmth, motion, smiles, bright colors. We connect with them, with what interests them. This is how they get the idea that they can connect with us in return.

Autistic children are all too used to having their interests (if not their needs) ignored by those around them. Parents often speak of their autistic children as being “in their own world”– but all children are. The difference is that there are standardized bridges between the worlds of NT children and adults– storybooks, games, and above all lots of verbal interactions. Many autistic kids, I suspect, would be just as happy as NT ones to share activities and special moments with their parents, but the parents are often oblivious to how to engage in the experiences that excite their kids, and instead resort to trying over and over again to drag autistic kids into activities that they do not enjoy.

Tangles did something special that day, and as usual, I came close to missing it. I had brought her a handful of brightly-colored drinking straws, because she enjoys chewing on plastic. She shook them out of their bag and started chewing one right away, babbling at me happily. I sat with her making sounds for a while. She played with the straws. Then she shoved one of the ones she was holding towards my face. At first I thought she was just playing with it. Then I suddenly realized: she was trying to put it in my mouth. I almost laughed, but then the implication hit me: she was sharing something she liked with me. It was as though I had brought her a box of chocolates and she had realized that the friendly or polite thing to do was to offer me one. So I took the straw in my mouth, said thank you, and chewed on it for a while. And I was incredibly touched, and proud of her.

Yes, the intent to communicate is there. We just have to be careful that we don’t miss it because it doesn’t look exactly the way we expected.

Complicated Thoughts About Words

February 1, 2014 3 comments

One of the hardest things for me to get used to when working with Rhythm is that he doesn’t like me to talk much. He gets overwhelmed by either processing language or the sound of human voices (especially female/higher pitched voices, it seems), or both. I don’t know the specifics, just that he often gets distraught if I talk to other people too much in his hearing, and even more so if we’re talking about him, even in casual, positive ways.

It is both understandable and odd that I have trouble with this concept.

I am, on the whole, an exceedingly verbal person. I spoke early, often, and at great length– and I still do. I enjoy describing and explaining things, narrating events, and helping people understand complex concepts. While I’m not averse to a comfortable silence, I enjoy talking quite a lot as well.

I also rely heavily on speech for many of the ways in which I show respect to the children I work with, especially nonverbal children. Things I do verbally include:

– Telling them when I am about to do something with or to them, like removing a piece of clothing, so that they can be prepared and have a chance to object.

– Asking them to express consent or preference. (Eg. “Would you like to go outside?” “May I put a jacket on you?” etc.)

– Voicing things they have communicated to me nonverbally, for confirmation or clarification. (Eg. Child signs =music= and I say “You want me to put on some music?” Child points to the fridge and I say “Are you hungry? Would you like something to eat?” — I often phrase things multiple ways, to reduce the chance of misunderstanding or them getting stuck on an unfamiliar word.)

I especially tend to try and problem-solve verbally, making it an interactive process. But today, I had something of an epiphany.

[a side note– Rhythm recently discontinued a seizure medication that was a heavy sedative. Since then, his parents have noted increased attention, alertness, energy, and motor control, but also a higher level of sensory sensitivity and more frequent frustration as he adjusts.]

When upset/approaching meltdown, he frequently signs =stop= and =scratch=, then scratches/claws anyone within reach. This can escalate to hair-pulling and biting, by which point he is usually in tears. It’s obvious that he’s in a great deal of distress, but it’s hard for us to tell what is triggering the distress sometimes.

Today, we had just gotten home from a walk, and he was starting to act worn out– not at meltdown yet, but at the “flop” stage– he plonked himself on the floor and starting signing =stop= over and over. I sat down with him and tried to work through it verbally, asking if something was wrong, if he could tell me what he needed, if he was hungry, in pain, needed to go to the bathroom, wanted a bath. I was asking these things calmly and slowly, trying to zero in on something I could do to make him less miserable… I hate seeing him so unhappy, and I was so at a loss for how to help him feel better.

He grabbed my wrists and scratched them, nearly crying. Then he took my hands and placed them over his ears. Something clicked in my brain, and I shut up. I finally understood that not only was he past the point of being able to answer my questions, but the very act of my asking was hurting him further.

So we sat there together in silence. After a moment, he made one of “our” faces at me, initiating a game we often play of making funny faces at each other. I responded in kind, and we made faces until he relaxed and smiled, at which point I tentatively asked again if there was something I could do for him. He asked for a drink of water. I nodded, and held out my hand to help him up.

When we went to the kitchen, his grandmother was cooking dinner, and began chattering at him cheerfully about what she was making. He fell apart again, dropped to the floor, and dug his fingernails into her leg. She suggested a bath, he agreed, and I hustled him away to the bathroom to get ready for the bath with minimal talking.

I’m honestly ashamed that it took me so long to figure this out– for a very simple reason. As I sit here writing this, I’m wearing ear-protection headphones, the kind you use around power tools. Because I had gotten to the point, as I occasionally do after a stressful or busy day, where I was afraid I would scream and cry if anyone else spoke to me– or even around me.

All sounds have the potential to drain my energy, but listening to speech that my brain has to process can be especially stressful, even for such a language-oriented person as myself. When I have limited processing power left, I can’t afford to spend it all on parsing information that other people are throwing at me. I was so exhausted by hearing their words that I could no longer hear myself think. All I wanted was for everyone to shut up and let me feel like myself for a little while.

Maybe that’s how Rhythm feels sometimes, too.

More Language Development from Fishy!

Skills are funny things. Kids acquire them in fits and starts, lose bits of them again, develop bad habits along with good ones, and intersperse balky moments of complete obtuseness with unexpected flashes of pure genius. Anyone who’s ever tried to get their child to demonstrate a new skill on cue for camera or proud relatives knows just how frustrating it can be when you’re sure a child has learned something, only to have them look at you blankly when you provide them the chance to do it again.

Fishy’s language ability is like this. He has a stable vocabulary of 6-7 hand signs (some of which he occasionally confuses with each other, and 2 of which he rarely uses unless prompted), plus a reasonably good ability to select items by pointing to them, provided they are nearby. He can string together 2-3 signs in a row in little proto-sentences, and we generally speak his signs aloud as he does them, adding in syntax and prepositions and so forth as needed. For example, if he signs =Fishy= =want= [points to book], we’ll say “Fishy… wants… to read a story.” He often signs out of order at first, then corrects himself, so the above sentence would probably look like:

Him: =Want=

Me: “You want…”

Him: =Fishy=

Me: “Fishy… Fishy wants?”

Him: =want= =Fishy= =want=

Me: “Fishy wants… what do you want, sweetie?”

Him: [pause, then points to the book]

There might be even more mix-ups and repetitions before I finally get a full sentence. It’s made more confusing by the fact that he has no signs for “yes” and “no,” so if I misinterpret what he’s pointing to or guess incorrectly at his meaning, I don’t always know it unless I give him what I thought he wanted and he starts to fuss. Then we have to start all over. He is, on the whole, remarkably patient with me.

There are also a few signs that his ABA therapist uses with him regularly, prompting him to imitate her, both in sentences and in songs (like “Itsy-Bitsy Spider” or “Wheels on the Bus”). The first big piece of language development I witnessed was when he adopted one of these signs and began using it on his own in other contexts. The sign was =time=, which the therapist used in “time for a break” and “time to say bye-bye” at the middle and end of each session respectively.

Now, he uses the =time= sign to indicate wanting any activity to start or finish! Since he hasn’t seen so much of me in a long time, when I come over now, he spends a lot of time signing =time= (for) =Fishy= (and) [points to me]… especially if I start having a conversation with his parents or paying attention to his baby brother instead of playing with him!

More exciting still, Fishy has now invented a sign of his own. A few months ago, his parents and therapist began noticing him using a hand-sign they had never seen before, and he would sign =want= and then the mystery sign. He often did this often towards the end of his therapy sessions, when he gets to watch a video for a few minutes (he adores movies), so they wondered if it might mean “movie.” If it didn’t, they didn’t want to give him the idea, so they carefully watched when he used it for some time, and decided that it did in fact mean “movie,” and started treating it as such. Vocabulary by consensus– I think this is a common way for little kids and their parents to agree on what a word means (you decide your toddler means “bottle” when he says “buhbuh,” and so “buhbuh” becomes the word for “bottle” in your house, at least for a while).

This alone is pretty incredible, given the smallness of his vocabulary and how long it tends to take him to acquire new signs. But something even more amazing was about to happen. He’s extended that sign to further meanings. (He’s done this before with signs that were taught to him, adapting them as needed: =more= sometimes gets used to mean “yes,” =goodnight= can also mean “I’m tired of this activity and want to stop”).

I found this out while having lunch with him. He gets regular “snack” rewards for eating his lunch well. They used to be specific rewards for eating X number of bites, or other discrete steps, but now they’re treated more like dessert– he eats a reasonable amount, then gets to ask for a treat. When he signs for a =snack=, I offer him a choice between 2 of his favorites– bite-sized graham or cheese crackers, veggie puffs, gummies, or yogurt melts– and he points to the one he wants.

On this particular day, he kept signing =movie= and I was baffled. Movie time isn’t till evening, and as much as he loves them, he doesn’t usually start begging for them until fairly late in the day, or unless he’s sick, and never before in the middle of a meal. The sign was still relatively new, and I thought he might just be over-using it, as he sometimes does with new signs. So I kept prompting him “Movie? No, you know it’s nowhere near movie time. Do you mean you want a snack? Can you sign ‘snack’ for me?” And he would sign =snack= and then go back to signing =want= =movie= and I was utterly baffled.

Finally, he pushed away the snacks I was offering him and leaned WAY across the table and pointed at an empty container of a third type of snack that I hadn’t even noticed was there. And the light went on in my head. “Oh! You want one you like better! You were trying to tell me you wanted a different snack, your favorite snack!” I ran and grabbed a new container of those snacks and was rewarded with a huge grin when I offered them to him. So I think the =movie= sign also means “favorite thing” of any kind. And I think that Fishy is one smart cookie.