December 2001 page 2 of 2
|Sunday 16 December
We got a Christmas tree this afternoon. Damian was so eager to decorate it, he opened the box of four ornaments we got at the tree place and set them down by the tree, awaiting their hooks. When Dan opened the decoration box, Damian got right to work, hanging all the balls on the low branches. He told us later he had "put Christmas on the Christmas tree."
When Dan pulled out the stockings, Damian picked his up and tried pulling it onto his foot. Then he took a couple of steps in this oversized velvet slipper.
When Damian decides he doesn't like his dinner, he doesn't say "I want something else," he says "I'm done. I want to get out." It's hard, because then you have to either persuade him to eat some more (which he usually does) or offer him something else, either of which mean ignoring his words and I hate doing that. His words are hard won, maybe not now but not long ago, and I want to acknowledge them as much as possible.
He wasn't stimmy at all today. Feeling better emotionally (more distance from the stress of school/Sue), digestively speaking (more distance from Friday night's chocolate cake), or overall (got more sleep last night, had a pretty good Mommy-and-Daddy day)?
Damian has now been essentially gluten-free for a week. Can we go a year? I don't know. We're going to challenge the diet in a week or so: give him a lot of wheat one day, see if it has repercussions.
Monday 17 December
Damian doesn't have regular class this week, he has "winter camp", which is run by the floor time staff and seems to entirely consist of high functioning kids.
Dan reports that Damian was baffled by the change in plan: he expected to go into the classroom but instead stayed in the yard. I had explained the camp concept to him but didn't know the specifics so I couldn't give him details. He needed details. Jean reports that Damian adjusted quickly, however, and got with the program.
When I got there, I could see that Damian felt pretty comfortable. He didn't want to leave (no surprise there, from Mr. I Want to Stay), so we stayed for a bit. I had to go to the bathroom, asked if he wanted to come. Nope. "I want to play with Mommy." But it was just fine for Mommy to go potty alone. This is unusual: normally once I get to class, he's on me like glue.
Sally (floor timer) was coaching Cam (a kid) to play ring toss. Damian wanted to play. I asked him to askCam, fed him the words. He asked Cam, who (when prompted by Sally) handed Damian a ring to toss. Damian tossed. Cam left. Sally coaxed Cam back. He tossed, handed Damian more rings (uncoached, this time). Damian accepted and tossed again. Simple. Nice. Probably more comfortable interaction than he usually gets at school. Cam is in the class I want Damian to move into.
Jules' dad started building a big tower out of foam blocks. The kids were having fun knocking it down. Damian got excited, shouted things like "it's falling down!" Nice to see him so exuberant while among other kids -- another unusual thing for him at school. Jules wanted to knock it down, so his dad built it again. Evan knocked it down (Damian helped, a little after the fact). Jules was upset. His dad built it again. He knocked it down, so he got his wish. I built the tower for Damian to knock down. Damian toppled it, falling into the pile. Jules was upset: he'd wanted to knock that one down too. So he rammed into Damian. Hard. I waited for Damian's wail. And he did get upset -- a little. Know what he said? "I want to knock it down again!" He was completely unperturbed by Jules' assault, it felt like part of the roughhouse of tower demolition. Do I need to say again? This is a sure sign he feels more comfortable in this environment, where all the kids are high functioning.
I gave him some chocolate on the ride home. Mistake. He got stimmy on and off the rest of the day, and his eye contact went south too. So no more chocolate for Damian. He was, however, quite present and involved. So the chocolate has a partial effect. Interesting.
Damian has become quite the helper all of a sudden. He insists on putting money in the meter, he wants to wash the lettuce (ie: use the salad spinner), he wanted to cut cheese with a knife, and he stole my camera and started taking pictures, then checking the image that appeared on the LED screen and commenting on what he'd just shot.
Dan played piano with Damian. Played two low tones, said it sounded like giant footsteps. Damian started stomping around the room. Then Dan played two high notes, said it sounded like running mouse feet. Damian ran around. Then he slammed into the ottoman, and Dan played a crash noise. This game went on for a while. Ended up somehow involving me as a crashee.
Tuesday 18 December
Damian was very restless last night, like a wind-up toy that can't seem to stop clattering. He went to bed at a reasonable hour, but woke at 12:30 am and spent a (restless) night with me. I finally scolded him at 3 am, sternly told him kicking me in the arm was no way to treat a mommy. Then he settled and slept.
Dan and I had a sit-down chat with Linda (Damian's teacher) and Bird (ST). Bird told us that she's been working on indirectly eliciting speech, that he has a tendency to need prompts in order to start talking. This is not exactly true at home. As usual. He talks whenever and on whatever subject comes to mind, though I do have certain other issues about that. Which we brought up. Namely, how to get him to start speaking more expressively, not so concretely. I gave the example of him heading to My Gym, saying "I'm running to gym class!" and my saying "You're excited!" Bird and Linda said yes, that's what you should do, give the subtext, help him express the emotional context. So basically we're on target with our response. Good to know. Still, I'd like a book or something, y'know?
We laid out our feelings about school with Linda. She agreed to support us with Cheri. She commented that he doesn't talk much but then when there are fewer kids around, he really comes out with full-on sentences. In group speech, they're happy when the other kids give two word responses, and then they say "Wow, Damian, that was eight words!" Heh. Still, she sees that something is holding him back.
He wasn't quite as with it today at camp. The chocolate still in his system? The bad night catching up with him? Both? It sounds like he participated in the activities, but wasn't as interested in other kids or as focussed.
I poked my head into Damian's regular classroom. Kenny tossed a ball to Damian. More than I've seen him do before. I wasn't able to see Damian's response, unfortunately.
We spent time at school after camp. I set his snack bag on a hillock in the grass yard and sat down. Damian plopped down in my lap and said, "I'm having a picnic with Mommy." Proceeded to devour his snacks.
Heidi pointed out how he held himself in the frog swing (a sling-seat swing with a lot of give): his back was straight, he held onto the ropes with his hands in a proper position -- when kids hold the ropes way up high, it's for support because they lack the strength or tone in their backs. He was able to sit on the curved swing and grab a ring with his feet, then transfer the ring to his hand and lean forward to toss it over a seal's head. Pretty damned good.
Shaving cream: he refused to put his hand in it. She put a dab on her nose, made a big deal out of how silly she was, put some on his nose, ditto. He laughed and willingly put his hand into the stuff. She's amazing.
She gave him the vibrating toothbrush to keep for the holiday break. She's used it to give him input on his cheeks and lips before brushing with the regular brush, but he's always refused to get his teeth brushed with this one. As we waited for the elevator, I asked if I could brush his cheek with it. He said no. I waited a bit and then did anyway, saying "gotcha!" He thought it was funny, so we kept up the game for a bit. Then, in the elevator, he said, "Mommy, brush my teeth." So I turned on the vibrator and brushed his teeth a bit. He was completely fine with it. Heidi and I looked at each other, astonished.
Heidi says when parents put their kids on the GFCF diet (we're just doing the GF part), they usually see a drastic improvement right away -- the kid stops stimming, starts handling textures better, etc. -- and then there's often a relapse after a few months. But even the relapse is at a significantly higher level than before the diet. Interesting.
Wednesday 19 December
Sounds like Damian didn't necessarily do much interacting during free play at camp today. He's still in parallel play mode, they say. But Jean commented that his focus was good and he made choices well. Frankly, both are no brainers for him (though they're not so easy for a lot of spectrum kids). It surprised me that she wouldn't know this after working one on one with him.
I don't know how much more he's getting out of camp than he does out of school, though he does seem more comfortable among the other kids, and that's a big deal in and of itself. But he was ready to leave when I got there.
We killed some time in an art supply store. Damian insisted on riding in a shopping cart, I obliged. We tickled each other's noses with a soft brush. When we left the store, Damian got upset. I had planned to keep the car in the lot and walk across the street to My Gym. Damian insisted we drive. So we drove across the street. It was easier than a meltdown. It disappointed me that he was so inflexible.
He picked up the vibrating toothbrush, started playing with it as a rocket ship (it *is* a rocket ship toothbrush, that's not just him). I asked where it was going, he said "into space," then said "to the moon." So I held up a round mirror and declared it the moon. He said it was the mirror moon, but decided the boom box should be the moon instead, so he flew the rocket to the boom box. Then he flew the rocket down to the counter, saying "the rocket is flying down to the down moon." (the mirror was on the counter). So he flew the rocket "up to the up moon" (boom box) and "down to the down moon" (mirror).
Thursday 20 December
Tired boy. Came to bed around 1am. I fled but Dan tells me Damian was very restless and when he woke at 6:30, Damian was already awake. It sounds like it affected his morning, though not too badly. He had fun playing with rice and with Streak on the seesaw. He was ready to leave with me when I got there, though, and conked out in the car.
I can't help wondering if his restless sleep and subsequent exhaustion this week is related to camp. I think it's a great learning experience for him, and from the teacher (a/k/a floor timer) reports, Damian gets excited and involved at least part of the time. They've heard and seen his delighted affect, which is a very good sign. I'm not sure he's ever shown that in class (note: ask Linda). But still, it's all new and different and most of the kids are new to him too, and I suspect it's also hard on him seeing that they're more advanced than he is. I hope hard in a good way, but who knows...
A near miss today, gluten-wise. I had offered Damian yogurt. He accepted. I fixed his yogurt and warmed a leftover hamburger for me. This included warming the bun. Which Damian saw. And really wanted. Really really wanted. With all his heart he wanted that bun. I did a fancy two step, trying first to convince him he'd much rather have yogurt/pudding/a meringue cookie. No dice. I tried to convince him the bun was yucky because you had to eat the burger too. No dice (he knew he could eat around the meat). I spread mayo on the bun and showed Damian how yucky it was, and played up the whole cookie idea again. It finally worked, and I was off the hook. I hate withholding food from him, hate eating it in front of him. Hate the idea that I'll have to probably cut it out of my own diet to make it more okay for him (or at least find substitutes for the things he likes, so I'm not flaunting it in front of him).
I'm no longer convinced the diet's doing that much, anyway. It may be, but he was a bit more perseverative today, less focussed, less eye contact. Could be tiredness, of course, but it always is. Not sure the diet was more than a coincidence of timing with him feeling better. Also not convinced it's NOT the diet -- it may well be. We have to challenge it to know for sure.
Damian sat on the arm of the couch, looked down into the trash can. Said "I'm going to go in the can." I said, "Are you garbage?" He said, "I'm garbage. Put me in the can, Mommy." So I did. When he got tired of that, he got out and found his little garbage truck. He drove it over to me and said "I'm going to put Mommy in the truck." I asked, "Am I garbage?" "Mommy is garbage, I'm going to put Mommy in the garbage truck." So he put my finger in the back of the truck and closed the lid over it. Heh.
Damian was fascinated by a Christmas card showing a cat with a Santa hat. He said, "It's a Santa Claus kitty cat!"
I was tickling him after dinner. I stopped. He wanted me to continue. He said "I want Mommy to do it!" He does this a lot, says things like "it" or "something" as if they mean something specific, instead of being flexible placeholders. So Dan and I pushed him to tell me what "it" meant. He finally said "I want Mommy's fingers to move on me" and place my fingers around his knee, so I could tickle up to his tummy, as I'd been doing. Apparently he couldn't remember the word tickle or make the generalization that this was what I was doing, but I thought he did quite well articulating what he wanted.
He's reverting to whispers -- just a little. He said goodbye to someone at school in a whisper, and when I asked the title of the book I was going to read, he whispered the name. I guess vestiges of his whispering days remain, probably especially when he's feeling a little overwhelmed (ie: camp).
Friday 21 December
Came to bed again in the middle of the night. This is getting to be a habit. This time he crawled into bed and fell asleep immediately, sleeping deeply and mostly motionless. I love when that happens. I do love having him next to me, but only if he sleeps and lets me do the same.
Speaking of sleep: the past few days, it's become apparent that Damian knows how to fall asleep. He lies very still. He used to fidget constantly till he conked out or I put him in a straitjacket (well, wished for one). Now its very different. Sometimes I think he's asleep but he's not. He's thinking and that makes his body still. You can almost see the thoughts flowing through his brain.
Last day of camp. Apparently Damian played well with Percy: Percy initiated, but Damian responded without adult prompting, which is a step forward.
Watching the other kids, who are all high functioning, and talking to the floor timers who lead the camp, I've started to realize that Damian's issues: that it's easier for him to interact with adults than kids, a certain kind of passivity, a self-sufficiency -- are pretty much shared traits with all these kids. Thing is, I see a different kid at home, and I'm not sure their parents do. Let's put it this way: he's at least on par with the higher level kids at his school, even if he doesn't always show it while he's actually at school. It feels reassuring to think, and I think it's an honest assessment.
I talked to Damian about potty training while we were driving home. He admitted sitting on the potty was boring (I asked if it was boring or scary or fun). I asked if he'd rather read a book on the potty or watch TV. He said watch TV. I said he could watch 10 minutes of TV on the potty when we got home. He said no, just TV, no potty. Damn. It's getting hard to bribe him.
He ate a small wheat cracker in the car (he spotted the box and asked for it, I had to make a quick decision). It's hard to tell if he has a reaction. He may, but nothing dramatic. Then again, it was a small cracker.
I put my bag away when we got home. When I got back to the living room, Damian had opened the cooler and pulled out packets of fish and containers. I opened the fresh tuna salad, told him what it was and asked if he wanted a very small bite. He did! And he loved it. He ate my lunch: polished off most of a quarter pound of the stuff. This is not the first time he's eaten this particular tuna salad, but it's been months. It's nice to see his palate expanding again instead of contracting as it has in the past couple of months.
I watched his play this evening without joining: it was rather imaginative. He took a small paint roller and used it as a car. Specifically, he rolled it down his toy roller coaster, even putting it through the tunnel and out the door at the bottom. He then rolled it over to me and up my leg, all the way up my body, saying "I'm driving up the Mommy Hill." All self-initiated imaginative play. I'm seeing more and more of this. I think he's recovering his equilibrium.
Saturday 22 December
We're finally painting Damian's room. When I started to fold up his mat, he got upset. I asked if he wanted it in the closet or the living room. He said he wanted it to stay where it was. I explained as thoroughly as I could that we'd be clearing his room out when we painted. We'd explained the process before, but I think not in enough detail. He was satisfied with my explanation and allowed it to go into the closet, but got newly perturbed when I started to pull his rocking chair out of the room. He decided he wanted me to rock him then and most especially there. So I did. It gave me a chance to describe the whole process again, in great detail.
In the end, we moved everything but his bed out of the room and he was fine about it. In fact, he renewed his acquaintance with toys in their various nooks and crannies all over the house.
I tried to let Damian paint a wall while Dan was working on the ceiling. A mistake. Primer is heavy duty stuff. It gets all over clothes and doesn't come out. Does. Not. Come. Out. When Damian gets paint all over his hands? He wipes them on his shirt. Goodbye shirt. Also, when primer drips, if you don't get it right away, the drip dries like concrete. Probably not a good idea to let a preschooler loose on that stuff. I'd still like him to have the experience. Maybe with the latex paint.
He got a little wonky. Not stimmy or perseverative, nothing like that. Just seemed to lose his auditory processing. "Damian, are you hungry?" Nothing. "Damian, do you want lunch?" Nothing. "DAMIAN, DO YOU WANT TO EAT?" "Yes." When something like this happens, when he reverts in some way to how he was several months ago, it's not only aggravating, it's scary. It's as if time is going backwards, that we're losing the gains we've made. We think in this case, it was stress-related. It's disconcerting to have your bedroom dismantled, even if you basically understand the drill. Especially for a child who is to some extent a creature of habit, who finds familiarity comforting.
I played with him, a gardening scenario. (Did you know dinosaurs liked carrots? Me either.) Then Dan traded places with me and they played lots of imaginative games. By tonight, Damian was more or less back to normal. Greenspan says this, says when you're trying to work on something, to make a change of some kind (ie: toilet training or expanding foods), do more floor time. It allows you to touch base in a comforting way. To keep the connection alive.
Tonight Damian was a little uncertain about rocking and lying down in our room. Dan said "You'll sleep in our bed with Mommy and Daddy until your room is done." Damian said "My room is done." I thought we were going to have a meltdown. He looked a little panicky. But Dan repeated himself, and somehow Damian processed that this was not a bad thing, that it would be okay, and he went along with it. And fell asleep in fairly short order. I consider this a good sign; the bedtime ritual is important to him, and I like seeing that he can allow for flexibility.
(I said these would be shorter, didn't I? I meant it, too. But some days demand longer descriptions...)
Monday 24 December
Dan has started playing a word game with Damian; he says "Which of these three things is different from the others?" and then lists three things. He said Damian got it right two out of three times, and the third time Dan had listed an apple, a banana, and a house. Damian said "The apple is red." Meaning, the banana and the house are yellow (our house is beige). Thoughtful answer. Later, we were all under the covers playing "bears in a cave." Dan said, "Which is different, Daddy Bear, a TV, or Mommy Bear?" Damian said "Daddy Bear and Mommy Bear." Linking the two. Answering the opposite question in a way (which are similar), but still getting the gist. I consider this an optimistic sign. The different/same riddle is fairly abstract. If he can answer it, he's making some generalizations and judgements.
While we were all lying in the bed, half in and half out of the covers, Damian stood up under the covers. He farted and said "It was me!" I responded along the lines of, "It WAS you, you farted." I don't think he knew what the word fart meant, though -- I usually say "gas." He started doing a free-fall onto the bed, saying, "I'm going to fart!" and then diving onto a pillow, then saying "I farted!" We tried explaining farts. He thought it was all very funny.
Damian had lasagna for dinner. He wanted it and was bored of all his "safe" choices. This is his first real exposure to wheat for -- two weeks?! I haven't seen any bad effects in the couple of hours since then. We'll see how he does tomorrow morning. It would be wonderful to go back to wheat. We may have to simply limit how much he gets in any given day.
Anyway, he had diarrhea today, and was sort of stimmy too, despite being gluten-free. I think it's this tropical blend fruit juice he drank yesterday. I still do think he's got a salicylate sensitivity.
Friday 28 December
The days have passed in a priming, puttying, painting blur, with a break for Christmas. A few Damian moments:
He got a lot of presents, almost all successful. Especially liked the Bob the Builder Duplos. Also his ride-on pedal tractor, his tent-like play structure, and his tea set. We were playing with the tea set, and I said Wendy would like tea, and brought her over. Damian said "Somebody else wants tea," with this adorable smile, and brought over Scoop and Muck (the digger and bulldozer). So Scoop and Muck and Wendy had tea with us. I was impressed that Damian did a whole make-believe routine with the tea with zero suggestions from me: pouring the tea, then the milk, then scooping sugar with a spoon and stirring it into the cup.
He's been into miming and make-believe lately; when he put roof pieces on his Lincoln Log house, he lifted each piece with his hand acting like a crane, lifting and then lowering and dropping the piece into place.
He put one hand over the other, whispered, "I love you." I think the hands were hugging.
We went to my step-uncle's for Christmas dinner. Damian handled the crowd well, and only slightly flinched from his 3yo sort-of-cousin.
He had a very hard time with the dislocation during our big painting job. He slept badly in our bed, was therefore exhausted but wouldn't nap, and got very comfort seeking and sensory seeking. Doing Down Dog and shaking his head a lot. He also just seemed out of it, wouldn't respond to questions, etc. But after a good night's sleep, all of that was gone and he was back to his normal, lucid self.
Today we finished painting. Damian came in with a huge smile, walked up to one wall, saying "The wall is blue!" and then to another: "The wall is yellow!", then plopped onto his bed with obvious joy, and started saying "I want everything back in my room." (We'd promised him this would happen after the painting was done.) He was very happy once everything was reassembled. He seems pleased with the pretty walls, too.
Sunday 30 December
Yesterday was a Very Bad Day. Damian was more out of it than I've seen him since spring and more prone to meltdowns, to boot. I saw him lie on the floor curled into a fetal position more than once. It was scary how zoned he was. It was hard to get him to respond at all to us. By evening, we had had it. Dan and I together got mad at him and insisted on a response. We wanted to know what he wanted for dinner: he wouldn't even say yes or no to various choices or even act like he heard us. And he was sitting in first Dan's lap, then mine. It wasn't like he was involved in some activity. We had to shout and even shake him and still it didn't work. Finally, I told him it made us very upset when he didn't respond. I let my face show my feelings and my voice too. He got this vague half-smile. I remembered it from the spring. It's his reaction to feelings that are too uncomfortable. I think it's kind of a nervous reaction. We kept at it, and very soon he responded to us with tiny little "no"s, then buried his head in my chest.
When I rocked him, I told him I was sorry we got mad, and that we just wanted to help him and felt frustrated sometimes when he was so hard to reach. Then I said a lot of positive things about how proud we were, etc. He fell asleep quickly, though he came to our bed around 1:30 am and slept restlessly.
He slept in this morning -- till 11am!! Woke up chipper and a completely different child from yesterday. No stimming at all (with the exception of an unfortunate habit of shaking his head fast which we think he picked up from his non-spectrum cousin Christmas day). Very responsive and talkative. Immediate word retrieval. Great eye contact. When Dan played dominos with him, Damian made immediate choices, and when we played imaginative games, Damian was right there with us, furthering the play.
He and Dan drew on a Magnadoodle: Dan drew moon and stars, Damian erased it and placed the human-shaped magnet along the bottom of the screen, then the circle near the top. He said it was a boy and the sun. Imaginative, yes?
Later, we were all playing with construction vehicles. At one point, he started having his toy car start digging on the play mat. So we followed suit. I started wondering aloud what we were going to find, listed a bunch of cool things that might be down there. He decided we were digging for hugs. (Yes, hugs were one of the listed choices, but I still liked the thought.) He voiced the characters a little too, which is something he hardly ever does. I had to coax him into it. I imagine it will get easier with time.
At the park, Damian was hesitant at the jungle gym. Nervous about climbing the "rope" ladder -- he started up and then climbed back down -- and uncertain about sliding down. I got on the swing with him. That helped. He went down a slide. Once. Then it started raining. It's somewhat dismaying to see the negative effect of a week without OT, though it's not that surprising. He's been out of whack lately in general, this is part of that even though he was otherwise immensely better today.
Monday 31 December
Another good day. Damian was very inventive, very present. A lot of fun to play with. We ran around in the back yard, playing with his new hockey sticks, batting balls and pucks.
He cried when we got in the car. I had no idea why, and he just kept demanding that I wipe his tears. I asked, "Damian, why are you crying?" I expected "I want juice" or some such. Instead, he said "Because I'm angry." Way to go, kid! Expressing an emotion completely unprompted. We were very pleased. (Turned out he was mad because he wanted juice. I was right.)
Damian brought Scoop and Muck (construction vehicles from Bob the Builder) into his tent house (which he calls either a big house or a ball house), among the balls. I made an avalanche and buried them. Damian took Bob and Wendy out of their respective vehicles, and had them clear the balls away. I thought that was very indicative of a kind of identifying with the toy people. Very encouraging.
Note the two positive things I mention today: identifying his feelings and showing good pretend play skills. Greenspan's right. If you build imaginative play skills, a child's emotional development comes up right along with it.
copyright 2001 Tamar