June 2001 page 1 of 2
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Friday 1 June Laura had a good session with Damian this morning: she showed him the pictures of himself again and he readily identified every one, and then she showed him a book of pictures that he'd never seen. He was able to identify some and she told him what the rest were. The second time through the book he could identify them all. The big issue to focus on now, she says, is getting him to make eye contact when he talks. It's very hard. He can ask you for something over and over in a wonderfully clear tone, but his eyes just slide off and wander everywhere but on your face. I wish I knew why it was so hard, why this is such a common component. His eye contact is excellent -- sometimes. Other times it's for shit. It's far better for listening than talking. Maybe because he has to concentrate hard to make the words come out right...? We asked Damian if he wanted to go see a movie. He said no. I asked if he remembered going to see The Emperor's New Groove, and I described the event. He nodded. I asked if he liked that. He nodded. I told him what Shrek was about and said he could sit in the dark room on Daddy's lap and watch the movie and eat popcorn. Would he like to do that? Yes. So we went. He was transfixed the whole time. Afterwards, I asked if he liked it. He nodded. A couple of hours later, I asked again, and he said "I liked the movie." Saturday 2 June This morning Damian was hungry but said no to everything we suggested. (And how cool is it that he can say "no!"?) He was holding a play tray from his Fisher Price set with a plate of pizza painted on it. Guess what he wanted for breakfast? Right. So I went to Whole Foods to pick up a frozen pizza. Picked up some pastries for us at the Russian bakery next door while I was there. So of course Damian shared our pastry while the pizza was cooking. And naturally Damian was no longer in a pizza mood when it came out of the oven. Figures, no? But I'm still glad I went. I want him to know the power of words and the delight of communication, and I want him to have a certain measure of personal power despite all the restrictions we have to impose on his three year old's yearnings. Dan had a great floor time session with Damian, full of things like Dan insisting on eating only red things (Damian had to find red trucks and Duplos to feed Daddy) and Dan and Damian saying "Ribit" and hopping like frogs. We went for a walk. When Damian ran off up steps or down a ramp, we could tell him to "run there and back" and he would. And when we said his name, he stopped and looked back. Such a huge change, I can't begin to express it. We walked past the new house. Damian expected we'd just go on in. Tomorrow is the final walk through, so we said "Tomorrow we'll go in" and went on our way to the local park. I played with Damian and a toy bulldozer. He put it on a slide and I obstructed his way with my hand. He said "Move hand." Not something I can remember ever prompting. Every day more and more words come to the surface. I decided to try the months-old Magnadoodle game of drawing an image and asking him to identify it. He did, right away, in a clear voice -- everything from a butterfly to a pumpkin to a triangle. He petted the cat picture. He's decided baths aren't for him. We've decided to give him a couple of nights off, let him feel his power, then entice him back in. I hope we don't regret the decision, but we've been working so hard to get him in every night and it's getting harder rather than easier. He's gone through this before, it seems to go in cycles. Who knows, it may have something to do with some increase in sensory integration issues. I know sometimes my skin crawls at certain sensations. Then again, maybe it's just a three year old exerting his will. I don't mind giving in sometimes (like this morning). But there's a balance: I got him to feed the cat tonight over his initial objections, and we enticed him to play Zoom Ball by playing it ourselves and having so much fun even though he initially said "no" to the idea. Avoid power struggles but don't let him off the hook. A balancing act indeed. Sunday 3 June Damian handed me an empty sippy cup today. I said, "What should I do with it?" He said, "Fill it." I said "Fill it with what?" He replied, "Fill it with some juice." So cool. I never get tired of being amazed at his verbal ability. I guess this is where we have it over parents of typically developing kids: we hold onto the revelation longer. Damian was spacey and hard to reach on and off today. I think he picked up on our stress level -- we're very worried about money right now and it seeps into everything even though we try not to let it. When we let go and played with him, he snapped out of it quite well, though. He and I had a great time this evening, starting with my taking a stained glass camel away from him. "I want the camel!" he exclaimed. So I gave it back, but I exclaimed right back, "I want the camel!" and took it back. We went back and forth like that at least thirty times, both laughing. He ran off with the camel. I followed him to the living room, where we transitioned to a green laundry basket we use for his toys. It was a hat and a cave for us bears, and then it was a boat on a stormy sea, and Captain Damian had to hang on tight or he'd capsize. It was a ton of fun for both of us. Not strict floor time, maybe, but certainly lots of circles got closed. Monday 4 June This morning I read Miss Spider's ABC to him and for grins, I asked him: "One two three four, how many flowers?" "Five," he instantly responded. On a different page: "How many bugs?" This time he had to count, and did: "One, two... Three" Three bugs indeed. And on the last page: "What's Miss Spider eating?" "Cake." How cool is that? Oddly, he can verbally identify beet and carrot but not cow or pig. The toy garden is newer than the barnyard with its animals, maybe that's why? At the playground, he was going down the slide solo -- no handholding needed. And when he was done with the swing, he said "Get out of swing." And I looked at the parents around me and thought, "they think this is normal for him, and why wouldn't they? Just another three year old doing three year old things." But it's all new for him. I was reminded of something a mom posted on a small special needs list I'm on: that when her son is running around with other kids (gross motor is a strength for him), it's like he passes for normal. I felt like Damian was passing for normal: talking and sliding without fear. In the car, I offered Damian juice. I expected him to say "I want juice." Instead he came out with: "I want gummy bear." He announced, "I want bread" for dinner. (Not out of the blue, entirely -- I'd recently taken bread out of the oven, but still...) I knew it was a bad sign when I was rocking him and he heard the lyrics of the second song ("Go to sleep, my child". He started repeating "go to sleep" over and over, as if telling himself. When you think about it too much, it's a sure sign it ain't gonna happen. An hour later, after I'd been lying in bed with him telling him "no, you can't sit up" and "stop wiggling" and "put your head down and close your eyes and relax" for the gazillionth time, he did finally stop squirming enough to fall asleep. He'd been yawning on and off for a while, so he was tired but wired. I have this theory that he'd been trying to stay awake until Daddy got home. (Monday nights Dan has acting class.) You know what finally did the trick? I told him he needed to get enough rest so he could have fun at school and at Heidi's. He was asleep in minutes. Tuesday 5 June May reported that when she asked if he wanted to be in the grass yard or the sand yard, he said "sand." This is no longer a huge deal for us, but she was impressed by it. At Heidi's, she distracted him while on the swing by asking him to tell her animal sounds. He did! What sound does a frog make? "Ribit", said Damian. And "oink" for a pig and "moo" for a cow. It was all readily available to him, tripping off his tongue. A first. Heidi told Dan she's never seen a kid improve as quickly as Damian. Never. He clearly likes his school/OT ritual. He fell asleep in the car and Dan transferred him to me. I put him down in his bed and lay down with him. He woke oh-so-nicely, with smiles galore, in such a good mood. People ask if he knows when he needs a diaper change. Well, yes. He does. He suddenly goes running out of the room to escape Mommy's acute sense of smell! We went to Home Depot today, probably the first of many homeowner trips there. Damian sat in the shopping cart. He grabbed this huge orange bucket Dan had put in the cart and swung it under his feet, then he put his feet into it, still holding on. Cute. Later, he stood in the big part of the cart, not holding onto the sides, swaying like a commuter on the IRT. Later still, he helped Dan push the cart. Busy child. In the parking lot, he and I watched a forklift at work, and he mimicked the sound it made. Then he got upset while I was holding him and said "fix sock." He wanted pasta for dinner. He insisted on sitting in my lap. When I offered him his fork, he got offended. I had to feed him. But after the first bite, I left a full fork on the plate and he picked it up without thinking. Power struggle averted. He fed himself from there on out. The amazing thing about his language now is that it's still there. He's still talking, saying "Mommy come" and "Daddy fix" and "move hand" and "I want juice" and "I want gummy bear" and "yes" and "no!" (and "no!" and "no!" -- he's discovered it's a powerful little word). He's had short spurts of language in the past year or so, times I was so hopeful that this was finally the big breakthrough. But he always reverted back to silence and whines within a few days. Not this time. This time it's for real. I'm still so amazed. Every single day when I hear him say something with complete intent, I'm amazed. I do wish he was better at the eye contact while he's talking, though. Sometimes I have to try for minutes and he obligingly says the phrase over and over -- it was "get down" today -- but looks everywhere BUT at me. It's clearly as hard for him as the words were earlier. Another hurdle to overcome. Important not because it hampers him from letting his needs be known, but because it will hamper him in this world of nonverbal social cues. Wednesday 6 June We've started to be a little concerned about school again. I felt the first time Damian transitioned well that once I was no longer in the room with him, they paid too little attention to him because he is so very high functioning. That problem seemed to pass after I spoke to someone about it, but I can't help wondering if it's come back. Today when I came in the room to pick him up, Damian was lying on the low bookcase next to the door. One of the teachers sat nearby, doing something with another kid. A moment after I came in, she said, "Damian, what are you doing up there?" as if he'd just gotten there. I know this wasn't true; I'd seen him through the window. Also, they told me about three non-echoed words he'd spoken. This is nice, but not nearly what we're getting from him at home. Also, after school, he did a LOT of echoing. More than I've seen for several days. It may be a coincidence, but it's something to keep an eye on. He did well at Heidi's, though he was clumsy. Tired? He said animal noises again, as he did yesterday. First time for me. I was impressed. He got into a tire swing for the first time and was surprisingly comfortable there. He's gotten so much more assured on all sorts of swings. Heidi brushed his teeth n the bathroom. He had some discomfort -- gagging and making faces. She had him brush her teeth and then she brushed his. That helped. And when he gagged, she had the toothbrush "kiss" him, meaning she pressed the back of the brush against his lips. The deep pressure stopped the gag reflex and organized him. She also uses a toy so he can play between brushings. She's been writing up a progress report for insurance. She said she looked back at what I'd written when we first came to see her, less than two months ago. The short term goals I'd written then included going down slides solo, recovering his joy in swings, being okay with his shoes off, and enjoying a wider variety of food. He's already accomplished all but the last of those! After OT, we visited Dan at the new house. Damian already gets a kick out of the back yard. We brought over some of his outdoor toys and he had a great time. He threw a beach ball overhand, using good form. Heidi's been teaching him. When I said, "let's go to see Laura," he said "no!" He wanted to stay and play. But he had fun at Laura's. I heard him laughing as I sat in the waiting room, and she commented to me that she's never seen him so happy. She said I've described him this way -- animated, giggling -- but this is the first time she's experienced it. When he went for a walk with Dan, he brought his toy lawnmower. He started to "mow" the front lawn, then he decided the mower needed fixing and "fixed" it with his hammer/screwdriver/wrench, then mowed some more. Used to be he'd just use it as a push-toy, shoving it in front of him around the block. He did that too, this time, but definitely engaged in imaginative play first. Thursday 7 June This morning when we arrived at school, they'd set out a tub filled with oatmeal, ground to a fine powder. It's what they call the sensory table. Damian was intrigued. He put his hands into it, sifted the powder through his fingers, and then tried to climb in! It reminded him of the tub of beans at Heidi's, I think. So May took off his shoes and socks, and he clambered in. LaBelle sprinkled his toes with powder, and he put it in his own hair (!), and she brushed his cheeks and nose with it. He was a powder-white child. I took a lot of pictures. When I went to pick him up, I stayed an extra ten minutes. I told the teachers how much he's talking at home and illustrated for them: Damian started racing around the table. I put my arm out to block him, and said "What do you say?" He replied, "Open." (I was hoping for "move hand," but "open" works.) LaBelle asked me if we have a cat (she sees tufts of fur on his clothes sometimes). I asked Damian what our kitty's name is. He had to think about it and then said "Dante." And when I asked him if he would come to the bathroom with me, he said "no!" loud and clear. (He wanted to stay and play.) I'm hoping the illustration will help them work on language more with him. When we got home, he wanted me to play with his Matchbox building site. I'm bored of the toy, honestly. But I tried anyway. He wouldn't let me use the little bulldozer to put the building back up (it's on a hinge so you can knock it down and "rebuild" it). Instead he took a larger Duplo bulldozer. I said that was too big for the site, but we could build another building. I grabbed a bunch of Duplos and dropped them on the floor. I suggested the bulldozer work on that, thinking we'd just start building something right there. Nope. Damian used the bulldozer shovel to scoop up a Duplo and carry it over to the Matchbox site. So we built a Duplo building on the Matchbox site with the bulldozer going back and forth. I was impressed simply because he was taking an initiative in our play together. He does when he plays by himself, of course, but rarely comes up with imaginative ideas of his own when we play together. He said "I want juice" out of nowhere; ie: I hadn't mentioned it recently and there was no visible sippy cup. He was thirsty and thought to ask. This is true symbolic thinking and is very important. He was tired and grumpy much of the afternoon. We went for a walk (at first he said "no!" but we persuaded him -- everything's "no" these days). On the way home, he fell apart, wanted to be carried. He asked, "carry." We hugged him, explained that we couldn't (he's just too heavy now) and walked with him. A block from home, he completely lost it. So I sat down on the sidewalk with him on my lap and told him what we'd do at home (sit in the armchair, cuddle and drink juice). When we got home, he made a beeline for the armchair, ready to carry out the plan. He gave us both lots of kisses today. Sometimes seemingly at random. I think he's trying to soothe our stress. He sat in my lap having a pre-dinner meal of bread. When he finished his chunk, he said "I want more bread." I just love these unprompted requests. I get such a kick out of them still. Friday 8 June I think I'm going to have to write these Damian moments in a sort of cryptic shorthand until we've moved (Thursday!). I'll try to go back and fill in days when I have time, but I'm too exhausted every night to do a full-on description. Laura said he was out of it, doing a lot of echolalia. Exhaustion? Getting sick? Moving stress? Something about his hair or a bump on his head was upsetting him. He'd rub and cry and insist I kiss it better. Which means kissing the owie, kissing his tears, and this morning, kissing his snot. Ewww. No snot-kissing, thanks. Later, he had a meltdown, really crying. Saying something through the tears. Finally understood: "kiss it better." Watched Dan scraping the ceiling at the new house. Took his toy screwdriver and held it up in the air, mimicking the putty knife work. Played in the back yard, natch. Didn't want to leave to go home. I figured it out: he wanted to stay till Daddy was ready to go too. Hasn't seen enough of Dan the past few days. Losing word access today. Couldn't identify fire truck till I gave him that as one of the choices. Probably same reason he was funky at Laura's. Eye contact improving. We're working on it. Smart kid knows it's important to us. Still a ways to go. Saturday 9 June Some back sliding. He's still got the words and skills he's gained, but he's echoing more and zoning out more. Though I notice the zoning out is largely with Dan, maybe because Dan's not around as much? He's also stimming more -- lots of down dog yoga pose, for one. It seems like needing that sensory organization. Stress over moving? He got some cat fur schmutz stuck on his finger this afternoon. Whined. I asked what he wanted. He said "Take it off." He didn't want to play patty cake, so I played it with his knees. He joined me soon enough. Sang along with me, to boot. A first. At Bed, Bath and Beyond, he stopped and watched the fan display. Blew in mimicry. Sunday 10 June Dan and I had a tiff this morning. Damian ran with us from room to room, squealing in -- imitation? -- of us. He administered "medicine" to Dan using the (oral) syringe from his doctor's kit. I think he wanted to make Dan feel better! I bought a 50lb bag of pinto beans, brought it to the new house, dumped it in a packing box, and let Damian go to town on it. He LOVES sitting in beans and running them through his hands, etc. I figured he could use the sensory stimulation. He was certainly in a good frame of mind -- very present -- after that. Tonight he started climbing onto his bed, saying "climb into bed." Hmm... Then he ran into our room, climbed into bed saying "climb into bed" and then "pull the blanket up around you" (and did), and then "But Granny, I don't have a blanket here!" (as he threw it off). Aha. He was quoting from one of his library books, acting it out as he went. He went on to say "rest your head on the pillow" (he did) and "I don't have a pillow here!" (he tossed it off the bed). Ran from bed to bed playing out the story. Monday 11 June Good day. Damian had a grand old time at Dance and Jingle. He named animal sounds on cue (but in an incredibly soft voice), he said a few other things aloud (prompted), and he got incredibly excited when Nancy brought out the parachute. He loves swinging it up and down, getting underneath, and especially loves when she throws the little fuzzy pom poms in and the group "makes popcorn." He kept shouting, "Pop! Pop!" Nancy was singing about Silly Sally, and had the kids come up to sit in a chair one by one and say why Sally was so silly (eg: she washed her hair with macaroni). I tried to cue Damian to say "gummy bears" (ie: she took a bath in gummy bears). When he did, he ended up saying "I want gummy bear" instead. I gave him one, but it perturbed me a bit. It means he can't generalize it to talk about gummy bears in any other context. Or at least that he can't right now. The impending move is definitely discombobulating him. He often has word retrieval problems in the morning. I asked him what color a gummy bear was, and he wouldn't answer, not till I provided choices. Then he picked out the right color to repeat back. But he just couldn't remember the word. At lunch, he told me "I like yogurt." Unprompted. That was cool. He can be oddly obsessive about keeping his socks on, so I made a game out of peeling them off and guessing what those things (his feet) were underneath. Were they hands? Ears? Airplanes? (He said yes and we zoomed them around.) Crackers? (He said yes and tried eating one!) I was amused and pleased that he said yes, it means that he can enter into that kind of pretend play. Which I knew, but this is specifically misidentifying something, which feels like a good thing to be able to do. I wanted to go into a store. He cried instead of getting out of the car. So I sat with him on my lap for a bit. When I suggested he sit in a shopping cart, he said "sit in cart" and was okay with going in. Communication, ain't it grand? Tuesday 12 June In OT, Heidi was working with him on circles. He's still got a mitten grasp on the marker rather than the proper pincer one, and he scribbles in a vague circular motion rather than making circles. Heidi said (when I asked) that at 36 months a typical kid would be able to watch you draw a circle and draw one themselves. Damian can't, not quite. He is turning into a typical kid in some ways, though. Yesterday he scribbled on the cabinet door with a pencil before I could catch him, and today he smeared very greasy hand lotion all over the couch cushion. (He'd found the canister in my bag.) I got mad at him and he laughed. It's his defense mechanism. Disturbing. When I sat him in my lap and talked to him seriously about it, he listened and was more present. Interestingly, after he did it, he went to the bathroom and fetched the creamy hand lotion bottle. He came back and handed it to me. Apparently he wanted it on his hands. Which means he must have wanted the other on his hands too, but it was too gloppy so he rubbed his hands on the couch to get the stuff off, not to deliberately mess up the couch. So I taught him about the magical properties of the kitchen towel. He probably won't remember next time, but maybe the tenth iteration will stick. I put a pot on to steam broccoli. Damian spotted the flame, ran into the living room, came back with a fire truck and proceeded to "put out" the fire. Thursday 14 June Moving day. Damian handled it all better than I expected. (Better than I did! I felt on the verge of a meltdown/puddle of tears all day.) He loved running around the box obstacle course that had become our house. He cried when the movers came into the house (the shock of strangers -- an old habit that I thought he'd gotten past) but calmed down when we reminded him about the logistics of the move. He watched briefly but then went to play in his sandbox. He did look up sometimes when they came in and out with stuff, but was mostly involved with his sand. It might have been a way of tuning out the strangeness of what was happening, though he didn't seem tuned out, just not all that interested. He buried his hands in the sand and pushed them through, clearly seeking the sensory input of sand on hands. When most of the stuff was out, he sat in his room shouting, delighting in the echo. The past few days, he's been acting a bit strange. Not regressing exactly -- the new stuff is still in place -- but old habits are popping up. More book quoting, a bit more perseverative playing. But he's still asking for things and answering questions (though sometimes if you say "Yes or no?" he'll say "Yes. No," not making the choice at all -- but just as often, he will give a genuine answer). Dan commented that it's like the old Damian and the new Damian are coexisting. We went to the new house. Gamma, his new floor time therapist, started today. She'll be with him six hours per week and we'll get someone else soon for the remaining four. What a blessing that she could start now. Damian took to her almost immediately and was soon happily ensconced in his box of beans, telling her "shoulder" and "feet" and so on for where to pour beans next. She told me later she'd named all his body parts for him, then poured beans on his head and started asking him where to pour next. She was making the word retrieval easier for him. Smart. She got a lot of language from him with word choices and so on. She's trained as an OT. We got lucky. We went back to the old house after dinner to fetch the cat and some other odds and ends (well, he is an odd cat). Damian ran from room to room, shouting and happy to have all that open space. I found it odd that he was so cheerful about leaving what has been his home since birth, but maybe he's young enough either developmentally or age-wise to not ponder that too much. Or maybe it'll hit him later. He fell asleep on Dan's shoulder shortly after we got home (it was late), so we skipped the night ritual. Just as well, I think. Have a day to get used to being here before doing familiar things in a new setting. Friday 15 June Damian came into bed around two a.m. No surprise there. The surprise was that he fell easily asleep after he did, and slept well till morning. Starbucks for breakfast (silverware still at the old house, and plates still packed). Damian thoroughly enjoyed his coffee cake, though he was suspicious of the crumb topping. Liked the taste but didn't want to hold it. So I fed him. Went to the old house. Plumbers were there. As were said plumbers' sharp and pointy tools. Oy. And the study door was wide open. Damian ran around like a jumping bean on acid. Laura got good language from him today. Surprisingly. She said it was hard to engage him but once she did, he was very present. She got eight verbal circles in a row from him (she said something, he said something back: eight back and forths all on one topic). She was very pleased. I think it's directly related to what Gamma did yesterday. He's not suffering too much of a setback (if any) from the move. Thank god. He started doing something very strange this morning: he says "I want juice." You give him juice. He says "Open the lid." You flip open the top to expose the straw. All this is Standard Operating Procedure. But then he's been flipping the lid down again and saying "Open the lid" AGAIN. And doing it a number of times. I think it started with my suggesting that he could open the lid himself. He decided this wasn't right and wanted to make sure I did it, as many times as necessary. Dan thinks it may be a way of exerting control, too, in a situation (the move) that's got to feel way beyond his control. Jami came for the first time in a while. Damian started fussing when he saw her. Dan showed her around and I sat with Damian. Soon he got interested in seeing her being shown around the new house; he got up and ran into his room to be part of things. After that, he was just fine with her. At one point, they were in the back yard and he found a cherry tomato plant. He picked a ripe tomato and brought it into the kitchen for me. I was touched. Later he came into the guest bedroom where I was sorting through boxes. He clambered up the boxes like a squirrel. Fearless. Such a change from a few months ago. He started quoting from a book tonight, something about "I know you must be hungry." I said, "Are you hungry, Damian?" He didn't respond but about two minutes later, he announced, "I am hungry." |
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