July 2001 page 2 of 2
Damian was under the weather today. He stayed home from school. We had Gamma come, figuring he’d have enough energy for that. She said he tried but tired easily, so they took breaks. I felt sick too, so we had a very mellow day. We spent a lot of time cuddling. We had to do more prompting for language than we have lately, but he could still summon it when asked. Later in the day he started talking more and more easily.
After dinner we went out to garden. I was just going to water the flowers, but Damian actually wanted to dig in the dirt and fetched me my garden tools. He’s got green plastic versions of the same. So we dug in the non-flower bed. I’m trying to break up the hard earth so it’s actually great having a toss-the-dirt giddy kid helping me. I found some big hard clods of dirt and gave them, one by one, to Damian. He loved pounding on them with his shovel and breaking them up. He asked me for "another one" completely unprompted.
I’m not capturing it, but he’s now talking in complete sentences every day. Somewhere between two and six times per day, I’d say. Usually about five words and it’s usually descriptions of what he or I do. He often still says "I" when he means me and not himself, but he’s starting to sometimes leave off the pronoun altogether, which says to me he’s thinking about how it goes but not sure what the answer is.
Tuesday 17 July
He’s sick.
Wednesday 18 July
Damian felt well enough to go out today (while the Advil was in effect, anyway) so we went to the mall to run some much-needed errands. Damian was very upset that we went by CPK without going in. He pretty much insisted on going in. We snagged him a slice of bread, thinking hunger was all there was to it. But no, he wanted to stay there. So we had lunch. When he got the mac and cheese, Dan asked him, "Do you like macaroni and cheese?" Damian replied, "I love macaroni and cheese." Then he didn’t eat much. Oh well.
When he’s sick, we usually snuggle on the couch and watch TV. But we lack cable or a decent antenna, so it was videos or nothing. Every movie we’ve put in the past few days he’s turned down. Today I tried to watch Little Mermaid with him. He seemed into it until a loud party scene, then he started crying. I fast forwarded and then he was okay again, for a while. I don’t know what’s triggering it exactly because it’s not always noise, but it does seem connected with overstimulation, either visual or auditory. My guess is that his sensory integration issues are exacerbated by being sick. So nix the videos. Too bad.
At dinner, he kept saying he wanted specific foods (pasta, mac and cheese, even pudding) and then turning them down when he saw the plates. I finally offered him a medicinal lollipop. He said yes. I gave it to him. He gave it back to me. I couldn’t figure it out at all. When I sat back down at the table, he came over and said "pick you up" so I put him in my lap. He offered the lollipop again. I sucked on it, said "Mmm!" and gave it back. Only then did he suck on it (and chew it to bits). I think he wanted me to show him how to eat this odd candy on a stick.
Thursday 19 July
Dan and Damian are still sick. I'm still exhausted.
Dan asked Damian what he was going to do with some blocks. Damian replied, "I'm going to make a tower." Turned out he wanted Dan to make it, though he did help. They then demolished it with an excavator.
Damian had trouble watching a movie again today. When Dan lowered the volume a LOT, Damian was okay with it. He laughed during one section. (I wasn't watching, so I can't report on what was so funny.)
He was very volatile today, as he's been the past few days. He cheered up when we settled into the armchair together and played silly "I'm coming to tickle you" games. Amazing what a simple connection will do for a kid's mood.
Damian saw me gardening and wanted to join in. I was transplanting seedlings, though. So I had to guide his hands. He actually helped me dig around a plant carefully enough to uproot it with root system intact. I was impressed. But then he wanted to do some real digging, so he ran to the other (as yet unplanted) flower bed and dug there.
He must be feeling better. We both got spontaneous kisses tonight, unconnected to what was happening. I love when he stops what he's doing and comes over to offer a kiss. It's his way of saying "I love you."
Friday 20 July
When we brought Damian to the ped's, we didn't have to tell the nurse about Damian's issues. That felt good. He listened to her, made good eye contact, said yes and no, and (with prompting), he told her his age. She never had to know. And Dr. Jay commented that Damian's language has improved since the last time he saw him (May 31).
Damian wigged out at the idea of the tongue depressor in his mouth. Dr. Jay persuaded him it was okay (well, sort of okay). It's just around his face and head, this hypersensitivity.
We went to the fish store afterwards. Dan was paying, Damian was twirling around a pole near the front of the line. I started talking to him, getting responses. The older woman smiled at us. Then she said something to Damian. He looked at her and smiled, acknowledging her. That made me feel mighty good. He's coming out of his shell, feeling more comfortable socially.
Saturday 21 July
Last night Dan offered to take over for me when Damian woke in the middle of the night. So he got Damian, brought him to bed while I trotted off to the bathroom. Damian wasn’t having it. He cried and said, between tears: "Daddy go away! Mommy come!" Over and over until I relented and came to take over. The rest of the night, he snuggled tight against me to make sure I wouldn’t escape.
Tonight during the slide show, Damian identified a lot of things by name, including scissors and bicycle. Word retrieval is getting much better. I’ve been noticing the past few days that if you ask him what he’s trying to say, he comes up with the right phrase after thinking about it. (One cute one: I caught him between my calves. To escape he had to ask. He said "Open foots.")
We took a book out of the library: The Old Lady Who Wasn’t Afraid of Anything. It’s got various spooky objects making noises (for instance, a pumpkin head says "boo! boo!") We’ve only had it a few days but Damian knows all the noises. Today when Dan read it to him, Damian filled in all the noises. Dan hugged him and said he’s been waiting for that, for reading to be that interactive.
Damian’s starting to do a sort of self-stim that I really hate: he clenches his fist so that his fingernails can dig into the palm of his hand. I’ve started putting my fingers inside his fist to make it interactive. I don’t want to see him hurting himself as a stim. I know a lot of kids do it but it bothers me.
Damian has been insisting on a few rituals, things that have to go a certain way. For instance, he has to ask for his juice, you can’t just give it to him. He’ll give it back and ask for it. Then he has to ask you to open the lid. He won’t open it himself even though he can. (And he usually will if he takes the cup out of the fridge himself.) You have to do it for him. And if you open it before you give it to him, he’ll close it and then say "Open the lid." I think this has been exacerbated by being sick. Today he was feeling better and was able to handle my handing him an open lidded sippy cup. We need to challenge this kind of thing, though -- get him to open the lid himself, for example. It could turn into a major power struggle, unfortunately.
Sunday 22 July
Damian was much better today. Too bad we weren't. Last night he slept with me again. Kept waking up, clambering onto me to go back to sleep. I'd ease him off me and he'd fall asleep next to me. Woke up at least four times. Gah.
There's a game on the Elmo's Preschool CD that Damian couldn't play last time Dan tried it with him. That was maybe two months ago. Today Damian played it. It involves listening to a sequence of three musical beats/instruments while the three appear on the top of a piano. Then the first two play and you have to click on the third instrument. That takes memory and a sequencing ability he didn't have. He does now.
Monday 23 July
Damian was almost all better today. Know how I know? He woke up grinning at me and within an hour, he was using the two of us on the bed as a makeshift jungle gym, climbing over us, rolling over us, burrowing in beside us, and falling -- splat -- on top of us. Urgh.
We're going to try taking him off dairy, see what happens. I don't expect it to be easy. It's worth trying, though. A lot of people have seen good results with it. We'll give it a two week trial.
He went to see Gamma at the clinic, his first floor time session in a week. She said he did pretty well, though he was much less verbal than usual.
Lots of perseverating play this afternoon when he got back. Pushing things back and forth, playing with them in a non-imaginative way. But when I put his flashlight on end and called it a tree, he entered into the spirit of the thing and brought over a Fisher Price guy to chop it down.
We were all on the couch. I was trying to play Pattycake with Damian. He was playfully running away. He ran into the wall (back of the couch). Smack! He got upset, we soothed him and dried his tears. He settled on my shoulder to rest after that outburst. I said, "Are you sleepy, Damian?" He replied, "No." And promptly fell asleep.
Tuesday 24 July
We skipped school this morning -- Damian was up (and therefore I was up) from 1 to 3am last night. We needed to sleep in!
First OT session in nearly two weeks. Heidi took it easy. The trampoline to get him revved up (she asked him to count, he counted to twenty in a nice loud voice) and sitting on a flat swing was about it for anything body-challenging. She had him do a lot of fine motor and hand strengthening work.
His first session with a new floor timer. Not sure about this one. She asked if he likes stickers, suggested using stickers as rewards for speech. Um, no. We're certainly not opposed to rewarding certain kinds of things, but a floor time based approach is about eliciting language naturally, spontaneously, NOT with a reward system. If we choose to occasionally do it, that's one thing, but for a FLOOR TIME therapist to do so, not a good sign. She's very nice. Just inexperienced. I hate knowing more than the supposedly trained therapists. And yes, Dan and I explained exactly what I've just written here, albeit with gentler phrasing.
Wednesday 25 July
Finally back at school! Boy did he not want to wake up. And he got pretty upset when his bagel half split apart. He wanted us to "fix it." Doesn't work like that. He wasn't happy till I swapped halves with him to give him a whole one.
Apparently he had a fairly good, if low key day (one of his teachers called it a "low affect" day).
He did well at Heidi's. She said he's changed a lot since he started with her three months ago. He's much more organized now, as she put it. He didn't have any sense of his body in space, which made him afraid of doing a lot of physical things. He's gotten over that. He's got a good awareness now. So cool.
He was obsessed with the Nordic Track today. Dan called it "fixing" the track so as to assign it meaning. Damian fetched his toy tools to do the work. He still obsessed, though. Sort of a perseverative activity. I was too drained to do much about it. Dan distracted him. Dan did great. At one point, Damian was closing the door from the guestroom to the kitchen, so Dan asked if there was a nightmare in there. Damian said yes. Dan ran around to the other side and became the nightmare. Damian thought that was very funny. We tried to coax him to act out more of the book (Go Away Nightmare), and he did, but he didn't seem to do it very naturally. Still, he had fun.
While Gamma was here, she had Damian call me on her cell phone. Between us, we got him to talk to me a little. It took a lot of prompting, and he spoke in a very breathy, light voice, but it's a start in getting him comfortable with that kind of long distance talk. He's starting to say "hi" into the phone (with prompting) but this is something more. I think it's smart to use me or Dan to break the ice, as it were. Make it feel safer.
Thursday 26 July
Damian slept in his bed all night. First time since he got sick. Also the night of the first day he spent at school. Coincidence?
Damian’s Floor Time therapist-to-be spent time with him at school yesterday and today, getting to know him. Dan says she worked on getting his voice up (he still sometimes whispers and sometimes uses a very quiet voice) and getting eye contact. To get his voice up, she had him put his hand on his chest to hear the rumble, told him that’s where the big voice comes from. And apparently it worked; he spoke so loud he surprised even himself. I think this woman’s going to be very very good for him.
Damian and Dan ran into Boss Lady, the woman who runs his other (Regional Center-funded) floor time program, today. She had supervised Gamma’s time with Damian on Monday. Boss Lady hasn’t seen him since early May, I think. She said she saw major improvements in him, particularly in joint attention (ability to interact for an extended period of time with someone else) and that his affect was much higher (ie: he’s got more energy, more bounce). I’m sure she thinks some of this is due to her Floor Timers’ work, but she didn’t say so, instead giving us credit ("You must be doing some good things with him").
Dan and Damian played with Duplos this afternoon. Damian is -- finally -- getting inventive in what he builds. Dan built a duck, Damian made it a duckmobile. Saw that it was tilting to one side (the duck head was overbalancing it) and built up the "tail" to compensate.
After he finishes dinner, he runs off for a few minutes, but inevitably comes back around and asks each of us in turn: "Mommy come!" and "Daddy come!" We explain that we’re eating dinner, we’ll come as soon as we finish. He’s not real good at waiting, being a three year old and all. Tonight I kept talking about what I was eating and how I’d finish it, etc. He got real interested in my plate. Sat in my lap and watched me eat. I got him to kiss a broccoli spear and kiss a piece of sole. It may sound ridiculous but it’s the first step toward getting him to broaden his palate.
When he gets out of the tub, if you ask him "what do we do next?" he can tell you, "See pictures." And then what? "Read books." And then...? "Rock." And then...? "Go to sleep." A few weeks ago we asked him these same questions and he couldn't summon the words or images of what was to happen.
Friday 27 July
I met Hallie, Damian’s new speech therapist, today. I liked her. We’ll probably have to switch from her to someone at Damian’s school for logistical reasons, but I think she’s good for him to be with for this summer. She’s very into -- I forget what she called it, but something like normalized language intervention? Floor Time style, though apparently it’s been around longer than that. Anyway, consistent with what we do. She likes to keep things open-ended, seeing what he’ll say and how much spontaneous language she can get, as opposed to prompting him for words. It’ll be interesting to see how she does.
He’s gotten very into plopping on top of me when we’re on the bed, and rolling over me, and bumping into me. Dan thinks Damian misses playing with me. I’ve been sick, it’s been hard to summon the energy. I’m going to work on that.
Saturday 28 July
We bought Damian a mini-trampoline today. When I was ready to take it out, he said, "open." I said "open what? " He said, "Open the box." I said, "What's inside?" He responded (quickly, too), "Trampoline!" Then he said, "Open the box and see what's inside. A trampoline!" Cute. We jumped on it together. He was hesitant about jumping solo even though he has at the clinic with Gamma. But he was doing it tonight by himself.
We had friends over for dinner. Damian got very demanding after a short time. "Mommy come" and "Daddy come." He isn’t content to play on his own anymore, at least not often.
At one point, Damian was sitting on Dan’s lap in the dining room, eating mac and cheese. I was in the living room talking to Josh & Hari, telling them how things unfolded, how we found out what was going on with Damian. When Damian finished eating, he came in, but he did something odd: he flapped his hands as he walked. He almost never flaps his hands. It means he’s feeling anxious or scared. Then started spinning in a circle, which he also seldom does. I turned it into Ring Around the Rosie and then sat on the floor with him in my lap and talked to him about what I’d been talking about, and asked him how it made him feel. I don’t know that I got real answers (lots of "yes" answers sometimes means true responses but sometimes means "I’m giving you what I think you want) but I didn’t want to push for more right then. Mostly, I wanted to reassure him that we’re very very proud of him. After I did, he stopped stimming (spinning) but did continue clenching his hands. I think then it was about being nervous around Josh and Hari. Dan and I both spent some time hanging out with him, and that helped. What helped more, though, was that Josh and Hari both spent some time playing and goofing around with him. He felt better around both of them after that, easier. Warmer.
Hari went into Damian’s room and played with him with his Little People playsets (the town, the garage). At one point, she came out for a piece of string to be a pretend hose to go from the fire hydrant to the fire truck. Inventive. She reported later that he was very responsive, though on and off. He did sort of check out periodically (he was tired) but he actually checked out less than she did (she was tired too!). She, of course, did most of the initiating. This is the next step in his developmental evolution, I think.
At another point, Damian started running around the table, so we all formed blockades and he had to tell us to move our limbs so he could get by. Josh, sitting beside the piano, propped his foot up against the piano. Instead of asking him to move, Damian started playing the piano. So Josh joined in. Josh played an array of notes going down the piano while Damian did the same going up. Josh basically imitated everything Damian did. Damian liked this.
I get such a kick out of seeing people play well with my kid. And such a kick out of seeing him open up and smile at them.
Sunday 29 July
Damian sat with me this afternoon as I went back through old pictures on the computer. I asked him questions like "what are you eating in that picture?" and "What's that in your hand?" or "what are you doing?" and he nearly always answered easily: "pizza" or "shovel" or "taking a bath." His word retrieval ability has really taken off, just in the past few days.
On the other hand, his voice is almost inaudible much of the time. We have to keep at him to raise the volume...
Monday 30 July
Forgot to mention: yesterday we asked Damian what he wanted for dinner, gave him choices. He said "pizza." While the pizza was in the oven, he made up a song, which went something like: "We're going to eat pizza, pizza, pizza." He. Made. Up. A. Song. How cool is that? Kid's thinking imaginatively.
This morning at Dance & Jingle, Dan says, Damian was subdued until they played with pom-poms. He tossed them in the air and exclaimed, "See, I did it!"
When he came home, I was still working on the wall in his room. He was very curious. He wanted to work on it too. First he got on his bed and started pulling at the seam in the wallpaper there, then he picked up the putty knife and started scraping at the bare wall. Later, he took out a jar of red paint: he didn't want to paint on his easel or on paper, he wanted to paint the wall!
Then he got his stool and carried it, along with the putty knife, to our bedroom. He stood on top of it and reached up with the putty knife to the ceiling (of course, he was way too short). He was clearly remembering when Dan scraped the acoustic popcorn off the living room ceiling. We still have acoustic popcorn in our bedroom; Damian wanted to get started on getting it off!
I am so tempted to figure out a way that he can help with some part of the process. He obviously wants to. Maybe he can help put on the first coat of paint in his room.
This afternoon, I was going through old digital pictures again. Damian joined me and enjoyed watching until we came to some photos at Laura's office (his old ST). He turned away. I said, "Do you miss Laura?" He said "Yes!" in a wail. I felt so bad.
He was playing with his play-doh BBQ set today: he used the sausage scissors (they look like mini tongs) to pick up the kebab stick and set it in place. I thought that was interesting. I think he picked up the idea from some OT work with Heidi last week.
He won't jump on the trampoline unless I get on too. This is too bad, because I don't have the stamina to jump as long as he does, and I'd like him to get more out of it. I think he's still a little nervous about it because it doesn't have handles.
He does have an intense desire to have us do things with/for him, though, and it's more and more of a problem. I can't leave him alone, for instance, which makes it hard on nights when I'm alone with Damian. Tonight Damian wanted salmon but then vetoed it when I explained that I'd have to go to the kitchen to make it.
He wants us to open the lid of his sippy cup, to put the spoon back into his yogurt when he's taken a bite, to wipe his tears with tissues, etc. A major drag but if you press the issue, it turns into a huge power struggle. So I've been trying to get him to do some interim steps, like fetch the tissue for me to blow his nose, etc. Tonight he said, "I want tissue," then went to pull one of out of the box, blotted his own tears, and trotted over to throw it in the trash. All without prompting. So maybe it can come naturally with just a bit of encouragement.
Tuesday 31 July
This morning at school, Damian didn’t follow along during circle time. He made up his own moves, but they were in keeping with what was being sung/danced at the time. The teachers were impressed. It shows a lot of creativity and original thinking.
During dinner, I put on a jazz CD. Damian took a knife and fork and beat on the table as if playing a drum. The impressive thing was that he held the silverware just the way a jazz drummer would hold his sticks.
He was a tired guy today. Lots of tears over not very much. He kept wanting tissues and (unfortunately) insisting I use them to wipe his tears; he refused to wipe his own tears. So we’re back to that.
This afternoon when Damian saw Dante sauntering through the living room, he got on all fours too, saying "I a kitty cat."
He made a bead bracelet at Heidi’s. He wore it much of the day, and when he saw the picture of it during our nightly slideshow, he wanted to wear it again. He fell asleep wearing it.
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copyright 2001 Tamar