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.
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.
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].