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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.

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Fishy’s Making Language Progress!

October 23, 2012 Leave a comment

This is really exciting. On my latest visit, after being away from several weeks, Fishy’s grandma told me that he’s been making much more active attempts to communicate, including increased use of pointing and signing (though he still has a limited range of signs and tends to mix a few of them up) and lots of verbalization.

Fishy at one point had a speech therapist, who I never met (though I helped with the mouth-muscle exercises she prescribed), but she apparently made a lousy impression on the entire family, including Fishy himself.  I only mention it, really, because Mommy told me that Fishy never vocalized in this therapist’s presence, so she had no way of knowing what she had to work with. And I was amazed, because Fishy is an absolute chatterbox with me.

Let me clarify that a bit: Fishy doesn’t have any verbal vocabulary. He has a narrow range of vocal sounds ranging from an open “ah” of varying volumes and durations to similar variations on a sound I’ll transcribe as “ehn”– not a speech sound in English, but the nasal sound that you get if you try to make an “nnnn” sound with your mouth open in a wide smile. He seems to use them primarily to express pleasure and excitement, and, increasingly, simply as a form of engaging someone socially.

I hold two kinds of conversations with Fishy. In the first, he babbles at me and I fill in all sorts of things I imagine he might want to talk about– “Did you have a good day at school? I bet you did! You learned lots of stuff, huh? You can show me later. How’s Mommy and Daddy and Baby Brother? I hear you’re very good with your Baby Brother. Bet you’re proud of him, hmmm? Is that a new toy? It looks like you really like it.”

For this, I take my cues from context and from his facial expressions. He still doesn’t have signs or actions that denote “yes” and “no,” but he certainly responds with emotional displays. If I say “Did you have a good day at school?” and get a huge grin, I follow it up with “Oh yes, you did!” If I get a blank look or (rare) a pout, I follow up with “Not so much, huh.” I am not reading his mind, or even translating/interpreting for him in any systematic sense, just trying to engage him with the sorts of topics I know he can relate to. He seems to enjoy this immensely.

(Related, but slightly different: when I know a specific thing Fishy is expressing — giving his gesture for “I’m excited,” signing +want,+ or pointing to a specific item– I always verbalize it, both so that he knows that I understood him and to help him share the information with others present.)

Second, we hold lengthy exchanges of sounds that have no specific meaning. Fishy says “Ah!” and “Ehn!” and I say them back at him, and we alternate, often varying the sounds a bit from one iteration to the next– “Ah” is followed by “Aaah” and “Aaaaaah.” Sometimes I mimic Fishy as closely as possible, sometimes I include new simple sounds– “Oh” and “Ba” and “Mmmm”– typical baby noises or variations on Fishy’s own vocalizations.

And here’s where it gets really exciting, because Fishy is starting to mimic me back. If I switch from “ah” to “ehn,” he may do so too. He’s very attentive to the other sounds I make, as well. “Mmmm” seems to fascinate him, and I’ve noticed this before.

This time, as we sat facing each other, I responded to his “ehn” with “mmm.” He watched me intently, and then narrowed his mouth a little and said “ehhnn.” I repeated “mmmm.” And he came back with a sound that was very nearly “nnnnn.” Of course, I praised him like crazy!

This is essentially the basis for a process ABA therapists and animal trainers refer to as “shaping”– rewarding successive approximations of a desired behavior. First you praise any attempt in the right direction, then slowly start requiring increasingly accurate attempts in order to get rewarded. The details of how to do this best do take a bit of work, but I’m not doing anything nearly so formal with Fishy. When he’s with me, he knows categorically that I’m always thrilled to see him try something new. And he rarely needs much encouragement– he’s very eager to learn.

His parents and therapists have decided that his speech therapy, at least for now, will be done via his ABA sessions, and apparently they’re going to work on teaching him the sound “ba” first. I can’t wait to hear him discover consonants!

But a different breakthrough happened that day in his ABA session. He adores toy animals, and we were playing with his big plastic barn. We prance the animals around, put them in and out of the barn, etc, and talk about it while we do it.

We got out the cow. “A cow says moo,” the therapist said cheerily. “Moo” I echoed. “Ah!” chimed in Fishy. “Mooooo” I repeated. Fishy looked me right in the eye and said something that sounded a lot more like “oooo” than I’ve ever heard him say before. His therapist and I looked up at each other in amazement. “That’s right!” we exclaimed simultaneously, “A cow says moo!”

I was… blown away. I’m sure every parent has these moments– a first word, a first step, a first smile– that just stop the world and make you want to jump for joy. But there’s a special added thrill in Fishy’s case because I don’t always know for sure if he will ever be able to do certain things until he does them. Every typically developing child will speak a first word. But with Fishy, I had no idea if he ever would, or if so, when. Now, while I still have no idea whether speech will (or should) ever become his primary mode of communication, I have the distinct sense that he will have a first spoken word. And that is something truly worth celebrating.

Comparing Fishy to a Typically Developing Child

October 22, 2012 Leave a comment

There’s an amusing anecdote I never got around to relating. One of the first times I babysat for Fishy, he had a friend over for dinner– a petite, tow-headed, adorable little girl who I’ll call Blondie.

The differences between them were instant and striking. At almost 3, she was approximately the same size as nearly-4-year-old Fishy, although their proportions were different. She was able to walk and run independently, and pretty much talked a blue streak the entire time she was there. She could laugh, something Fishy doesn’t do (although I never think of it unless there’s another kid around who does).

She was, in short, a perfectly typical 3-year-old girl. I found her frankly exhausting.

She wanted to talk at me, constantly, and she wanted me to listen, look at her, pay attention, respond. I did a lot of smiling and nodding. I could only understand about half of what she was saying, due to the speed at which she talked, combined with the slight slurring of pronunciation that is common of young children. And I had trouble concentrating on her chatter while trying to make sure Fishy ate his dinner.

She demanded things constantly– not in a bad way, just in a very energetic way. If Fishy had milk, she wanted milk, and she wanted it right away. When Fishy got a veggie puff (snack food) for eating the required number of bites, she wanted one too. Then another one. And milk. And to tell me another story. And another puff. Make that two.

I tried to keep up. From across the room, her mother reminded her to say “please” a few times. Mostly, I was too busy to care whether she was being polite. Tried to give Fishy his eating instructions at the same time and reward him on schedule for following them. Made Blondie eat 3 bites to earn a puff, too. Fair is fair. She barely stopped talking long enough to eat, and she certainly didn’t stay seated for most of the meal. Reminded me why I have no desire to ever be a parent. She ran me ragged in a matter of hours.

Don’t get me wrong, she was cute. And sweet. Fed me a bite of her mac-and-cheese from her tiny spoon. Adorable. Made charming mistakes in her speech, as little kids do. Told stories from her own funny little perspective. “Look, Mommy,” Blondie said when she saw Fishy with his shirt off, “He has two bellies!” (She meant belly-buttons. She was looking at the little pucker in his abdomen where the distal end of his shunt is. It was a nifty interpretation). I imagine Fishy’s parents, as much as they love him for who he is, might envy other parents specific moments like those, and I can understand why.

After dinner, I tickled Fishy with a sensory toy I had brought over and he grinned. Blondie wanted me to try it on her and she shrieked with laughter and wiggled like crazy. And then wanted more. I hadn’t realized how relatively not-ticklish Fishy is until I saw her reaction.

Her Mom sat on the floor facing Fishy and he did his excited head-shaking thing– head whipping side to side, arms flapping out to the sides. I was happy to see that she understood this as an expression of fun and mirrored him.

She asked me if I had worked much with kids with disabilities before. “Not really,” I told her. I said something about how I worked more often with adults with disabilities, and I can’t for the life of me remember if the way I phrased it made it clear that I meant I had adult colleagues with disabilities rather than that I assisted adults with disabilities (the latter has been true in the past, but the former is more accurate at the moment).

“Is it different?” she asked, and I wasn’t quite sure what she meant, or even how to ask her to clarify. I fumbled something about how my experience with disabled adults definitely gave me some skills that translate to working with Fishy, like being comfortable with nonverbal communication, but noted that I don’t really think of people with disabilities– children or adults– as a category in any way, but simply approach each as a unique individual.

“That’s wonderful,” she said. Is it? It seems perfectly normal to me.

I was, too, struck by how similar the kids were in some ways. They took bath-time together, and both had a blast. I was pleasantly surprised to see Blondie’s Mom initiate with her exactly the same game that I play with Fishy– scooping up a little plastic cup of water and holding it over the child for a moment of anticipation– “Water on your…. “– and then dumping it suddenly– “Head!!” (or arm, or shoulder, or tummy, or hand, or whatever). She said it exactly the same way I do, too. I guess some things are just universal.

I felt mildly superior on Fishy’s behalf at bed-time. He got ready quietly, listened to his story, signed +good-night+ to me, and was silent almost as soon as I tucked him in, while from the other room, Blondie was vigorously protesting the mere concept of going to bed.

(To be fair, I’ve since learned that I came into Fishy’s life at a very pivotal time. A few months before I knew him, getting him to sleep was an exhausting and lengthy chore of rocking, soothing, and so on. He’s made amazing progress. But a point in his favor without qualification: one of the verbal skills he lacks completely is the ability to whine).

All in all, the evening provided me with a very useful basis for comparison, and my conclusion was clear: I like Fishy a lot more than I like “normal” kids. So I guess I’m not normal, either– but then, we knew that about me already.

Fishy Goes to School

October 16, 2012 Leave a comment

Those who know me in person know that, in general, few things short of an impending apocalypse can tempt me out of bed before 9 AM. Today I was voluntarily up by 7 and out of the house at 8… so that I could go with Fishy to his school for the day (he does a half-day at a school that does “reverse mainstreaming”– a few typically developing children in with those with disabilities. Today his classroom didn’t have any “normal” kids, though, which meant it was more low-key and quiet).

It was wonderful. And seeing him fall over himself with excitement when I showed up at his house early was just to die for.

I wasn’t too worried ahead of time, because I know Fishy adores school, so they obviously aren’t mistreating him there, but I was a bit nervous about seeing other children and maybe witnessing some unintentional abuse in the name of therapy. But I didn’t see anything like that. The adults– a mix of teachers, therapists, and parents (or other caretakers like myself)– were respectful of the children, encouraging them, letting them play pretty much however they wanted, encouraging them in their skills. There was a lot of laughing and smiling from all the kids.

Only once did I see one of the kids relatively unhappy, being made to practice using a walker in P.T. [Physical Therapy]. I thought the adults should have been doing a lot more encouraging him and explaining /why/ this was a good thing for him to do. During Fishy’s walker practice, I not only enthused at him for every step, but also reminded him that soon he’ll be able to walk by himself, and can go places, and can walk to Mommy, and walk to Daddy… and so on. I have no idea how much of this he understands, but I figure it can’t hurt to remind him what he’s getting out of this hard work he’s doing.

I heard a few instances of “gentle hands” (mostly at Fishy, who tends to grab a bit hard when excited) but no “quiet hands.” A little too often, adults did things for children instead of letting them try, or rushed the children a bit in their own attempts, but for the most part all were given turns and encouraged to do as much of the activity at hand as they were capable of. And of course, I spent most of the time at Fishy’s side cheering him on and making sure he had everything he needed– which, today, was mainly lots of attention and affection. Everyone there has noticed that he’s been a little clingy since Baby Brother arrived on the scene a few weeks ago.

I was thrilled to see, during circle time, that the teacher went around asking each of the more mobile children to do a particular motion with him– clap, point, whatever, and when he got to Fishy, he said “let’s do the Fishy-flap” and had Fishy do his “I’m excited” arm-flap with him! Fishy was tickled pink, and so was I.

I attended an adaptive P.E. [Physical Education] class with Fishy, where we practiced various motor skills– some as a group, others particular to each child. He and I army-crawled across the floor together, and he practiced pushing himself around on a small rolling stool– first sitting up and pushing himself backward with him feet, then, at my request, face-down on the thing like lying on a skateboard. As I expected, Fishy liked that better because he could move forward.

He also got to use a “dynamic stander”– like a cross between a Sega and a wheelchair. The kid is strapped into it in a standing position, leaning forward against an upright padded surface, and there are big wheels to either side that the kid can push to roll forward or backward. Fishy seems to have the hang of it, but he gets tired easily. The kids also got to lie down and be bounced on a little blow-up raft thing, which apparently helps them build up muscle-tone (and which they love), and were physically guided through various exercises like “pedaling” their legs as though riding a bike.

I was gratified, and honestly quite surprised, to find that my affection for children with disabilities extends beyond Fishy. I got along swimmingly with all the kids that I interacted with, and they all seemed to like me a lot, too. There was only one fully verbal child there, who I found a little tiring (I have enough trouble parsing adult speech– child-speak is exhausting for me to try and understand), but who was also cheerful and fun. We played together with cars on the floor, and pretended to go to the beach.

I managed to pull this kid, Fishy, and another kid who seems to be a bit behind Fishy’s development level, into a little circle to play with some fist-sized plastic pop-beads. Talky was sorting them into piles by color, Fishy wanted to chew them and clack them together with his hands and rummage around in the bin full of them, and the third boy wanted to be handed them one at a time and throw them to me. All 3 kids enjoyed watched me spin them like tops. And when free play time was ending, I managed to get all three kids helping me toss them back into the bin. The other adults seemed frankly impressed with me. Heck, I impressed myself. I’ve never been this good with kids before. Is it possible that I, so incredibly focused on language from an early age, just communicate best with non-verbal children?

Am I really starting to consider a career in this? I wonder how special education pays…? [note: yes, I’ve heard. Poorly. I’m not going to rule it out on those grounds alone, though, provided I could get work in a positive teaching environment like the one I witnessed here].

Fishy and Autonomy/Sense of Self

September 2, 2012 2 comments

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.

Fishy goes to the doctor

September 2, 2012 4 comments

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!).

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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!

A boy called Fishy

September 1, 2012 Leave a comment

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.

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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.]

I met him entirely serendipitously, at a small party that just happened to be at his parents’ home. I walked into the house, and there, sitting on the sofa, was Fishy. My initial though was, frankly, that he was a funny-looking kid. He is. He wears thick glasses strapped around his head like a set of swimmer’s goggles. In addition to the hydrocephalus, which I didn’t know about at the time, he has inherited Daddy’s mop of curls, so his head looks ridiculously large for his body. His body isn’t quite typical either– he sits a bit slumped due to poor muscle tone, and his arms and legs are a bit small for his age. But oh, is he a charismatic child! His head bobbles a bit– his eyes wander around the room. They fix on a person, and his face lights up with a huge goofy grin, eyes wide and eager. Arms go up in a universal “pick me up!” gesture. He gets lifted, wraps his arms around your neck, rests his head against yours, and the grin changes to a contented smile. Pure charmer. A few minutes later, his arms are reaching out for the next person, and he gets passed around like a baby.At the party, he fixates on the men in the room, begging to go from one of them to the next. It’s the beards, his parents explain. And indeed, upon being lifted by any man, he rubs his little face against theirs excitedly (I have since learned that he’s very touch-oriented, but has relatively insensitive skin: the result is a passion for textures, especially ones that are a little rough).Fishy completely ignores the women in the room aside from Mommy, despite their shy attempts to engage him. Until it comes to me. I plop myself right down on the floor next to him when he’s put down to play and turn on the charm (I smile a lot at little kids, to an extent that surprises many of them, even babies. But they kinda like it, and most infants flirt with me outright, much to my mother’s amusement).

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.