Friday, January 29, 2010

A sudden influx of patience

As I was struggling to get James to accept the mask of the nebulizer over his face (he used to like this, see left), and James protested and scratched and threw himself around, Isabel began to express her displeasure with this summary treatment of her brother. Barely noticing the escalating screaming coming from somewhere to the right as I concentrated on trying to get some of that albuterol in James, there was a sudden burst of surprise and horror from the floor. Isabel, in her distress, had thrown herself from the rocking chair, headfirst onto the milk crate holding toys, and was now crying disconsolately on the floor. As I abandoned the dinosaur mask and rushed to hold her, James sat on the edge of the bed, shudderingly crying softly. That's it, I thought.

On some days, the "That's it." would have meant something entirely different. That's it. I've had it. I want to go into my own room, cry for a little, then surround myself with my down comforter and read something that has nothing whatsoever to do with children, while my husband comes home to rescue the kids from a mother who can no longer accept the terrible consequences of trying to do the right thing. I don't think I've ever asked him to do that, but I've certainly gone to my room and to bed until some little thing came toddling after me to peek at me under the covers.
Today, though, it didn't mean that. It was a like a blanket coming down on me, that made me feel lighter, not heavier. It meant, I'm not doing this anymore. I've always thought I've been pretty good at discerning which battles needed to be fought where my kids were concerned, and have congratulated myself on the many things that I haven't deemed worthy of my own specific control on the outcome. Spilled drinks are taken away, and aren't lectured over. Uneaten food is not insisted on. Sometimes, James doesn't have to sit in his car seat right away, but can pretend to drive for a minute, even when we're late to preschool. But this was a battle I thought I needed to fight. James was coughing more, and it's true, it did seem that James wasn't as enthusiastic over putting the dinosaur mask as he used to be, but it was only for a few minutes. Still, drastic consequences ensued--worse, surely, than more coughing and discomfort.

So we quit it. Everyone went to go watch Elmo. The nebulizer came too, and got plugged in, and sat with us. James didn't trust me at first, but within a few seconds, he sat in front of me and leaned back, the mask a few inches from his fingers. After the first skit, his fingers found it, looked at it, and put it away from him. After the second skit, I put it on my mouth. "Dinosaur!" I cried, and roared quietly. After a few repetitions, Isabel wanted to try. She did the same. We took turns over the next couple of skits, and I could see James smiling and eyeing us out of the corner of my eye. On my next turn, he grabbed it from me and put it on his face. I exhaled happily. We all took turns for a while. I turned the nebulizer on. James moved away and sat on the floor. Isabel and I took two short turns, Isabel holding it away from her face, and me too. Then we turned it off, and I packed it up. Little by little, but no more holding him.
It's true that he used to be used to it. But now, he isn't. The same at the doctor's office today, with the oximeter, the otoscope, and the thermometer. He was such a pro. But now, the only thing he trusts is the stethoscope. But we can start over again. And it can take a long time, and we may even have to start again sometime after that. And even though James wanted a bath, and ran away when I started the water and didn't come back, Isabel got one. And she got the most patient mother she's ever had. Everybody's asleep now. It's amazing to me, how when I felt everything was going wrong, suddenly patience descended, instead of withdrawal, or tears. Everything moved in slow motion, and it suddenly seemed that we had a great deal of time to work this out, and that there wasn't any rush. I hope it comes again--I really appreciated the visit. And so, I'm sure, did the kids.

Sunday, January 24, 2010


I've been thinking about how deceptive appearances can be. In South, Sir Ernest Shackleton mentions the hopes some of the men had of boarding a solid-looking iceberg that seemed to be heading in the right direction, toward land, instead of staying on the floe they were on. His explanations of his misgivings about the soundness of such a plan are full of the deceptive qualities of icebergs--of their apparent sturdiness, of the invisible flaws that lead to a sudden collapse, of their susceptibility to changes in current, and the difficulty of launching the boats from their steep sides.

I am not very good at reading facial expressions. I had thought that I was, but I've had it hammered into me again and again that I am not. Facial expressions always seem more negative than they later prove to have been, and I have been guilty too often of trusting the interpretation I've given the face over the actions of the person. I've finally had to realize that I don't read faces well, and it is a strange relief to be able to remind myself of this when I get, I think, a negative reaction. Or maybe none of this is right, and it's simply a lack of understanding--the facial expressions of people may have nothing to do with what they are talking about! What a strange thing to discover, all of the sudden, as if it were new. That others speak, just as I do, about one thing, while they are often thinking of another.

But it isn't really this that has really come home to me today. It's the emptiness of jealousy. I have realized today, that someone I had envied years ago, once but intensely, was not to be envied at all. I would snatch my troubles to me and never release them rather than have hers, and I'm so sorry. It's amazing how easily I assume from appearances, that everything is going well. And this must apply to how people talk and act, to the currents underneath, the hidden flaws, the fragility of great strengths, the sudden great drops into dangerous waters. I don't mean that people are deceptive in that they aren't to be trusted, only in that they aren't what they seem, or, at least, what I see. I haven't been looking hard enough. People are so fragile and so strong in unexpected places.

Wednesday, January 6, 2010

James' ASL tutor

Marco and I have been really excited about what's happened since James started being tutored in ASL two weeks ago. Although we've only had two sessions of an hour each, we've already noticed many changes, most of them after the very first time. James began to work much harder on the clarity of his signs, and made handshapes and gestures during the class that he'd never made before. James also made a few signs perfectly that he had always adapted before, including "shoes", which he made with two fists for the first time, instead of a fist and an open hand, and "car", for which he made an alternating motion for the first time, instead of both fists going in the same direction. He suddenly began to understand that there was a difference between palm-forward and palm-towards-the-body, too, and began experimenting with that, making the sign for shoes correctly (and, later, incorrectly, with a smile, before switching back), and "rabbit" with the palm facing backwards for the first time. Though James' tutor only concentrated on ten signs (and James knows many hundreds), the effects of really concentrating on these signs seems to have extended to other signs he knows--he's been more careful to make them the way he sees me do them, and is paying more attention to the handshapes I'm making. He's isolating his fingers many things! It's really amazing to me.

As if this weren't enough, he's vocalizing more, especially while signing, and vocalizing to signs he's never made sounds to before, like "m" to "farm", and articulating, though not giving voice, to consonant-vowel-consonant words like "pen". He's also started saying "r" when we talk about the letters of the alphabet. I noticed this during the first lesson, and have been thinking about why he might be doing this more when his tutor is here. His tutor went to both Deaf and oralist schools, and says words for us as he signs them. He's good at this, but the sounds of the words are sometimes simplified. I think this makes it easier for James to try to repeat them. This seems to go along with what Dr. James MacDonald told us to do--to often emphasize sounds when identifying and talking about objects, rather than the whole word. He says this makes us more "possible" communication partners, which is a phrase that makes sense to me. The great thing about working with just a few sounds and signing as well, is that James gets, and repeats, the simplified sounds, and is still communicating completely at the same time with signs.

This has been an unexpected benefit to what was primarily an effort to bolster the language that's worked best for James so far, ASL. I'm very happy that this is both improving his ASL and his speech. Pretty incredible. We're really excited that so little time can improve James' communication so much, and the work certainly carries over to the rest of the week. James signs more in general, and talks about his tutor in his absence, using kind of an odd sign that looks like "daddy", but at the back of his head (maybe the cochlear implant?) to indicate him, and then demonstrating the signs that he emphasized that week. He really loves it when he comes, and brings him all sorts of things for him to identify. About halfway through he gets tired from all the work, :), and his tutor teaches me so I can teach James later. I'm getting a lot of practice fingerspelling, and understanding fingerspelling, which I'm not used to having to do. I know this sounds strange, but I've always loved the feeling of total ignorance I get when I'm trying to get along in a foreign language for the first time. This liking usually fades, as I get frustrated trying to get better, but better mastery (if it ever comes) usually restores the good feeling. :)