October 2001 page 1 of 2
When I picked Damian up, he said 'we go to see Rivka." remembering from this morning.
Bobby wanted a picture again. Damian and Bobby willingly sat together for their portrait, though it was a little hard rounding Damian up for the shot. His concentration/focus at school is considerably worse than at home.
I commented to Rivka that Damian was doing things he wasn't comfortable with just eight months ago (swings and slides and climbing up jungle gyms), that he's progressing fast and imagine how great he'll be doing in eight months from now. She said he's doing great now. She's impressed by him. Nice to know.
He swang from his hands (holding onto a bar) and dropped onto a beanbag chair. I never thought he'd do that! He loved it, too.
We shared a tamale at the WeHo farmer's market. A new food. He kept saying "stay here" when I wanted to go home. It's becoming his refrain when he's not ready to move on. Hard to move him.
He ate a PB & J sandwich for the first time in over a month.
Wednesday 3 October
Damian started grimacing and shaking yesterday -- basically clenching his jaws, face, and body -- it seemed like it was out of frustration but also a weird kind of pleasure in it. At first I ignored it because the episodes were short lived, but by evening he was doing it for longer and it totally creeped me out. So I told him to cut it out, that I hated it. He stopped and didn't do it today at all.
He saw Heidi yesterday for the first time since August. I think he missed her, though he doesn't know how to process that feeling into words yet. He was very happy at her gym, and worked hard for her. She put him on a tire swing and spun him around. He loved it. She gave him a choice: "Swing three times or four?" "Four times!" Then the choice was four times or five? "Five times!" As I said: he loved it.
It's getting harder to get him to sit down at the dining table for lunch or dinner. Bah. I hate this cycle. I know it's about control, but it gets truly tedious to be the bad guy Mom telling him he has to do something so arbitrary. I do it because I think he needs to have order in his life and to be able to do things that people ask. If he didn't have issues, I think I'd be a different kind of mom. More lax.
I got mad at him tonight. The camera was attached to the computer; I was downloading pictures. He kept picking the camera up. I was afraid something bad would happen to it if it was disturbed mid-download. I told him to stop. He didn't stop. I told him in a stronger voice. I had to tell him four times and make my voice harsh before he'd listen. And then he burst into tears. I tried to talk to him about it, about how I was mad but loved him, etc, and talking about why I was mad. It was very hard, though. He got stuck on the "I want a tissue, wipe my eyes, wipe my nose, I want juice, sit in my (your) lap" cycle, and wouldn't listen to what I was saying without interrupting for his litany. So I got mad again. I felt bad, but I also felt like I had to break him out of his ritual so he could hear me. He finally did, though I don't know how much he understood. At this point, he wants me to wipe nonexistent tears when he gets upset. It's so damned frustrating. I want to talk about the emotions, which are so very important for him to comprehend. He wants to go through this damned ritual, which makes it impossible to actually grapple with the emotions behind it. Which may be part of the point, though I think it's mostly become a self-soothing (with Mommy's participation) mechanism.
Thursday 4 October
Today is Damian's day to stay after school with Robin for a floor time session. She told me that they had a lot of fun putting together and playing with a pirate ship. At first, when they took it out of the box, she felt overwhelmed. She said, "I don't know how to put this together!" Damian handed her the instruction sheet. She told me she was floored. She kept saying how smart he is.
Bird (his speech therapist) told me that she pulled out the Teapot board game. Damian commented, "I have this game at home."
Dan's been working long hours this week, coming home after Damian's in bed (and you wonder why I've gotten behind in posting these daily accounts...I jot down shorthand versions after he goes to bed and then pass out). Damian keeps talking about Dan's absence. Today he said, "Daddy works hard and hard and hard." Indeed.
Damian started the automated roadway (circular road) on his Fisher Price town. I suggested someone could drive on it. He chose Officer Mommy. He called her Mommy. I handed him a blue car. He said "Mommy drives the red car" and fetched a red car. (Our car, the one I drive, is burgundy.)
Gamma was chasing Damian outside. She fell. She made a big deal out of it and said she was hurt, could he help her? He came over, kissed her and gave her a hug.
He's become fascinated with a small music box. He keeps asking me to wind it. Today when it was playing, he said "the music box plays music" and then put his slippers on his hands like gloves and clapped them together. He said he was "clapping to the music."
Gamma said she wanted to take him home with her, carry him off. He said "No!" and got upset, ran over to hug my leg. She said she was kidding, but I don't think he got it. I explained that this was the same as when Heidi says she could eat him up; she's not going to eat him up and Gamma's not going to take him away from me. They're just saying how cute he is and that they love him. He relaxed.
I tried to entice him to the dining table but he kept saying "stay here." Chose cheese crackers over a real dinner so he could stay on the couch. I gave in. It's too hard to be a single parent. We sat on the couch and watched a Friends rerun and ate a catch-as-catch-can dinner.
Friday 5 October
I picked Damian up from school half an hour later than usual: he has speech therapy after class on Fridays. I heard the sound of talking coming from a classroom. I was curious. We went to check it out. All the teachers and administrators were there, having a goodbye party for someone. Damian stopped in the door, transfixed by the sight of all these familiar grownups. He exclaimed something, I didn't hear what. They were all very amused by him. He wasn't scared at all, he thought it was cool. He wanted to go inside, but I discouraged him.
Then he wanted to go down the floor time hallway (two small offices that serve as floor time playrooms) where he'd had fun yesterday. Kept saying "stay here." So we stayed for a bit. Ran into Jean, his Monday/Friday floor timer, with another kid. I finally got Damian outside but then, of course, he wanted to "stay here" in the yard. I figured what the hell, it's a good play area. Let him.
Jean came outside with her charge, Jules. Now, Jules' father and I had talked about sharing floor time so our kids could learn to play together, and we'd both talked to Jean about it too. Jean suggested today that since we were already there, we might as well give it a try. So we stayed. Jean got Damian and Jules to interact just a bit. They were both throwing balls, first to each other and then taking turns tossing the balls down the slide. They were both having a lot of fun, though I wouldn't say they were exactly getting into being together. But it worked well enough that Jean and I talked about making it a weekly thing. I think this will be very good for Damian. The problem with playdates with typical (ie: "normal) kids is that they're going to expect more social ease from Damian than he can give, and they won't understand why he isn't like other kids. A kid like Jules is really on his level and therefore a better fit, albeit demand less from him. Damian should ideally have both.
Tonight, out of nowhere, Damian started saying, "Daddy is working harder and harder and harder." Note the change from yesterday's "hard and hard and hard."
Lately he's been answering a question by picking up part of the question. IE: I ask: "Should I put that away or do you want to play with it some more?" His answer: "Do you want to play with it some more." Frustrating.
He also often describes what he's doing but uses the pronoun "she." "She is stirring the hummus." It seems arbitrary whether he uses "he" or "she" to refer to himself.
Well, I take that last bit back. He's sitting beside me playing with play-doh right now. First he said, "and she cut the play-doh with a knife" but then immediately corrected himself: "And he cut the play-doh with a knife, and he cut it down."
Sunday 7 October
Damian rode on a horse today for the first time. When we asked him beforehand, he said no, but after he saw the setup he said yes. The horses are attached to a wheel-like thing, each horse is at the end of a spoke. And they're in a circular ring. So they've got nowhere to go except around. Awful for the horses, I imagine, but great for a kid like Damian. He felt completely comfortable doing it. So he rode around with Dan walking beside. He seemed to like it, but didn't want to go again.
Then we went on a small train ride through Griffith Park. That was quiet fun. Then the merry-go-round. Damian sat with Dan on a bench rather than trying an up-and-down horse seat. I watched as they went around: at first, Damian looked down with an "I'm not here" expression, but Dan talked to him and held him tight and by the end, Damian's head was up and he was more present. Still not exactly happy or looking around, though. Dan thinks (and I agree) that the loud calliope music in combination with the motion is just too much for Damian.
We went back to a friend's house afterwards, the people we saw a couple of weekends ago. In the car, Damian sat right next to the little autistic girl; they were both in their carseats. He kept peering around the side of his seat at her. Flirting, playing peek-a-boo. So cute. Unfortunately, she's not yet able to respond to his overtures. But it was so nice to see him making them.
Tuesday 9 October
"Stay here" is becoming a huge bone of contention. Damian's started having veritable meltdowns about leaving places. It's a transition issue and it's a pain in the butt. Very hard to deal with. I've taken to picking him up and hauling him off. He kicks me and cries and keeps saying "stay here!" I only do it after I've tried everything else, all the things that usually work ("we'll go in five minutes" & "okay, five minutes are up" and talking about where we're going next and how much fun it'll be). I hope this is a phase. A SHORT phase.
I talked to May today about getting Damian out of that class. I didn't mean to do it right then, but as I picked Damian up, two kids were having freakouts, and I heard a TA mutter about how the kids in this class were violent, and I thought, "That's it. He shouldn't be here." Turns out May's leaving in a month -- family crisis. I'm very sad, both for her and for the school. But in a way it makes the decision easier, because she won't care about keeping him close by her. And he'll have a hard time transitioning to a new teacher in that class, so why not transition him too? I really hope this works out. I see Damian responding to other kids now, and I want him with kids he can model from, ASAP.
Went to the park again. Damian did all the same things as yesterday. It was earlier so we weren't alone there. He was nervous at first, but warmed up to the idea. I kept having to intervene, though. He'd see a kid coming up the jungle gym, and he'd back off. I'd say "it's okay, he's not going to hurt you, I'm here, go ahead." etc. and Damian would finally go ahead with what he'd planned. Which is actually a vast improvement. Even a week ago, I couldn't convince him to move forward if he was intimidated by another kid.
But something did happen: Damian was crawling through an aboveground tunnel (up on the jungle gym level) on his way to a tall slide. An older boy, maybe six, wanted to come through the other way and told Damian in a harsh tone to get out of his way and I think even shoved him. Damian backed out really fast and then wouldn't go back into the tunnel for anything. Poor kid, this was NOT what he needed. I marched over to the kid and his buddy and basically chewed them out. His mom was alerted that there was something up, and came over to find out what. She did the right thing: she asked her son about it and then brought him over and they both apologized to Damian. Damian was of course withdrawn and monosyllabic, but he seemed to listen. Then I coaxed him back into a tunnel by saying I'd be at the other end waiting for him and protecting his airspace. He went for it, which made me very happy. I think that apology really did help.
At dinner, Damian picked up a picture I'd printed out from yesterday, a wide shot of him on the slide. I said "What's that picture of?" Damian replied, "It's a picture of the park. Damian went down the slide" (pointing to himself on the slide) "and through the tunnel" (pointing to the tunnel) "and climbed up and up and up" (pointing to the steps) "and down the slide." (Pointing again to the slide, sliding his finger down it.) Wowza.
Also at dinner, I pretended my hand was a tickle spider. I called it a "little spider" and had Damian order it around. He told it to walk along the placemat, so it did -- and then it tickled him. He loved that. We did variations, and then he ordered it to go to the kitchen. So it (and I) did and then came back and tickled him. Etc. But then when Damian ordered it to the kitchen, Little Spider got recalcitrant and said "No! Stay here!" Damian tried ordering it again, and again it said "Stay here!" And yes, I think he recognized where this came from, but like me with him, didn't know how to deal with it. Finally, Damian ordered Spider to the kitchen and Spider said no and cried, asking for a tissue. Damian wiped its tears and nose with a napkin. He laughed. Really liked acting this part out. We've done that part of the scenario before, but I think connecting it with "Stay here!" made it feel more real, and therefore more funny.
Wednesday 10 October
Damian apparently was fascinated with a stranger who came into the classroom, following her around. The teachers prompted him to ask her questions: "Who are you?" and "What are you doing here?" So he did. They were amused by his boldness.
Nadia (school OT) set up an obstacle course for the kids from chairs. The teachers looked at it skeptically, wondering aloud if any of their kids would go for it. Guess who did? Damian. He scooted under chairs and through whatever maze Nadia wanted. Hee.
May talked to Tania, the teacher of the Jumpstart class and found out who was in the class. She (May) thinks Damian is better off where he is. She says he's learning to interact with kids now. There are apparently kids in the Jumpstart class who might react negatively to his overtures, and that could well set him back. I don't know what to think now. I don't like to see him in his current class, but I don't want him in a bad situation either. Have to do more investigating.
When we got home, Gloria was in the kitchen, cleaning (she comes alternate Wednesdays). Damian went right to the kitchen door and said (asked) "the floor is wet." It didn't look wet, but the mop was still out, so it was a relevant question. Gloria assured him the floor wasn't wet anymore and he trotted in.
I always tell Damian what's coming up in the day, so he knew to expect Silver at one o'clock. Just before she got here, he said, "Silver was at the picnic." He was remembering the first time he met her, back in July, at her company's picnic! When she arrived, he said "Silver strummed the banjo at the picnic." Right again. So she brought her banjo inside and let him strum it. Which he did, with confidence. She commented that he'd been much more hesitant three months ago when she offered him the banjo.
Kahuna and Damian had a great time together. Damian still doesn't quite have the motor control to blow bubbles well, but he's getting better. Kahuna said Damian's hand-eye coordination is excellent -- he can pop bubbles with some kind of device Kahuna gave him. I knew his fine motor skills were good, but I wouldn't have expected him to be able to do something that was also time dependent (ie: you have to be fast). Kahuna also said Damian's very engaged with him, so now he's going to start pushing Damian into new territory (including symbolic play, which is what I've been waiting for).
It may be too early to say this, but I'm starting to see some evidence that our campaign against Damian's willful passivity is starting to work. He's still asking for us to do things for him, but when we don't, he's crying for a shorter spurt, is more able to calm himself, and actually does whatever he was asking us to do. So. Not all the way there, by any means, but better.
Tonight at dinner, as I was telling Dan what Damian said about Silver, Damian started talking more about that picnic. He said Gamma was there, and Silver was there, and Karen was there! Karen is his ex-Floor Time therapist. He hasn't seen her since that picnic. I'm amazed he remembered her name!
Thursday 11 October
Robin has Damian for floortime directly after school on Thursdays. She reported that they had fun together again, and that pushy Bobby from his class got involved so they played together a little. Damian pulled back from being his around-adults self but was able to take turns at a game, etc. She definitely saw his kids anxiety, though, at one point outside when he stopped what he was doing when a group of kids came near. She suggested she spend half an hour each week with another kid/therapist combo. I think it's a great idea if she can find a good match. The more peer interaction Damian gets, the better.
On the way home, Damian was very tired and knew it. He asked for juice, and when I handed it to him, he said, "I want to sleep." I said this was a good idea. He then closed his eyes, but with a sneaky smile on his face, and opened them a moment later to peek and see if I was watching. I kept glancing back at him and he kept opening his eyes and grinning at me. So cute. He did eventually close them long enough to fall asleep.
I spoke with the school director today. She, like May, thinks Damian's not ready for the challenge of the Jumpstart class, but it's a moot point because there aren't any openings and may not be for the entire school year. Bah. But she did say they're taking steps to make Damian's current class a better learning environment for kids like him. She urged me to look into some kind of structured class time with typical kids, an afternoon preschool program or something given by the Y or some such. I called My Gym for a class today -- I've been meaning to for a while -- we'll try it out Wednesday. As Boss Lady says, it's OT and motor planning and socializing with NT kids all in one.
At dinner, Damian did something I hadn't seen him do before: he took his fingers and walked them to the top of his purple/pink sippy cup and then slid them down. Pretending his hand was a person. Dan asked if it was a mountain, I asked if it was a slide. Damian said he was climbing the purple mountain and sliding down the slide.
Friday 12 October
Yesterday his teachers said he was low affect and he might be getting sick. They were right. He woke up at 3:45 crying and radiating heat like a furnace. He spent the rest of the night in bed with us but it wasn't exactly asleep, not until the Advil kicked in. He insisted on having his juice cup right beside him -- he was holding onto it like a comfort object -- and having my nightstand light on. And of course he was lying on top of me for at least half an hour. So I had to prop myself up to make sure the juice didn't spill. Eventually he lay between us, but he was incredibly restless, poor kid.
Today was spent mostly being couch potatoes. Damian likes cooking shows, I discovered. Or at least he does when he's sick. I can understand this: they use tools and he knows the basic movements from watching us cook, and there's no storyline to follow or loud music or outsized emotions. Easy listening. (We watched Playhouse Disney in the morning and cooking shows in the evening and took a nap in the afternoon. Low impact day.) It was tough, though. He insisted on sitting on my lap. For hours. Got upset when I had to take a pee break.
Tonight I had to change his diaper. His pants had gotten wet too. I said, "I'll have to take off your wet pants" and Damian agreed, "Take off wet pants, put on dry pants." I turned to get them. "Let me get some good new pants." Damian said "Good new pants. Bad wet pants." Cracked me up.
Saturday 13 October
Last night Damian came into our bed around midnight. No big surprise there; he was pretty miserable. He lay with me for a while and then wanted juice so he sat up. Wanted me to sit up too so I could be his chair. I did but reluctantly. Then I turned off the nightstand light. He wanted it on. I was trying to convince him it could stay off when he changed tacks altogether: he stopped asking for the light to be on and asked to go to his room. Where he settled in with Dan and spent the night. With his table lamp on. He got what he wanted another way. A workaround.
Today was another low key day. Damian's fever broke this morning, so he was significantly less miserable. Just tired. As were we all.
Something I forgot to mention yesterday: while he was sick, Damian's voice went up to a strangled squeak. I don't think it was that his throat hurt, though maybe it did. And he didn't have laryngitis. I think it's just that whatever made him whisper last winter is still lurking inside his brain and came out while he was sick.
I read some books to him this morning. We read Go, Dog, Go. I had him tell part of the story. For instance, I said, "One little dog going in" and asked him how many big dogs were going out or I said "The blue dog is on the red tree" and waited for him to say "The red dog is on the blue tree.". Well, I said "The green dog is up" and Damian filled in, "The yellow dog is down." Then he pointed to the green dog and said "up!" and pointed to the yellow one and said "down!" Hmm. He did it on the next page, too. "The blue dog is in," I said. Damian replied, "The red dog is out." Then he pointed to each and said "in!" and "out!" I asked, "Do you read this book with Bird?" (his speech therapist). "Yes." Aha.
After a couple of books, I said, "Do you want to read more books?" "Yes." Usually I give him choices: read Go, Dog, Go or Green Eggs and Ham, for instance. But this time I said, "What book do you want to read?" I wanted to see what he said. He thought about it and then said something I couldn't understand (his words have been a bit blurry since yesterday). I kept asking him to repeat it and he would and I still couldn't understand, and we were both getting frustrated. So I asked him to point out the book. Bear in mind: he can't see the covers, just the spines. No pictures on the spines. But he pointed to one right away, and I realized that's what he'd kept repeating: Miss Spider's Tea Party. So we read it and he was happy.
Being sick hasn't made him do a lot of stimming -- I've seen virtually no stimming at all, for a long time -- but his play has lost its imaginative quality and become mostly perseverative. He spent a while today pushing the Discovery City elevator up and down. I turned it into "who wants to ride to the restaurant on the roof?" and he went along with it, but in a very desultory way and his attention wandered quickly away. His language was good today, though. Seems like when he's sick, he regresses in whatever area is still shaky. Used to be language, now it's imagination. Though actually, he always perseverates when he's sick. So I guess it used to be language and imagination. Maybe someday it won't be anything. Wouldn't that be nice?
Sunday 14 October
Damian came to our room around 7:30 this morning. We were not in the mood to get up. He came into bed and snuggled in between us. He tugged on Dan's pillow, trying to take it from him. Dan thought it was covering Damian's face by accident and bothering him, so he moved it away. I gave Damian mine. He put it over his head (think kid under pillow with legs sticking out) and fell asleep. We slept in till 10. What a luxury.
He was still sluggish today. We spent time outside and I thought he'd grab his little broom and mimic Dan sweeping. He didn't. I thought he'd get into weeding with me, or at least digging with my small shovel. He did, just a little. And he's harder to reach, and forgetting words he knows, and repeating us more (echolalia). It's like he's back where he was a couple of months ago developmentally. Kind of freaky, even though we know the cause and have every expectation he'll get over it in the next few days.
Monday 15 October
Dan and Damian made faces at each other last night during bathtime. Dan raised one eyebrow. Damian didn't. But this morning on the way to school, Dan looked at Damian, who scrunched up his face at his daddy, and then raised one eyebrow. He had to squint to do it. But he must have been thinking about it overnight.
Today at OT, Damian really led the way. Rivka suggested he get in the tire swing. He disagreed, went for the slide. So she set up blocks at the bottom to knock down. Then he wanted to get into the ball pit. But another little boy was in there, an unfamiliar kid. Damian was very uncertain but you know? He went in anyway, and didn't completely avoid the kid. Then when this boy got out and jumped on the trampoline, Damian watched and commented, "Gil is jumping on the trampoline." Definitely interested. As Rivka pointed out, this is a good step toward socializing: interest, not avoidance.
Damian was tired today, as he usually is on Monday, but compounded by having been sick. Jean commented that while he was on the bed, he pushed his head into the mesh of his guardrail. Seeking the pressure. She hadn't seen him do that before. He does do it, though, sometimes when he's falling asleep. If he's with me, he sometimes presses his head into my armpit. Or he seeks the top or side of the bed. I guess this means something but it seems pretty damned harmless to me. We all need some kind of sensory input at various points in our lives. Why do you think hugs are so satisfying? Jean actually said something similar later: she told me he was definitely seeking sensory input more today than usual: he went straight for the bean box and sat down in it. Which is exactly what it's for. She thought this was very good: that he knew what he needed and acted on that knowledge. It's a skill that they try to teach kids. Much more productive than just falling apart or being spacey.
Dan worked late tonight. I had trouble getting Damian out of the tub. He kept saying "stay here." Finally, I said "Are you planning to stay in the tub all night? Are you going to sleep in the tub?" He replied, "No." I said, "Okay, how long do you want to stay in?" He said "Daddy will come home." Awwwww.
He did get out of the tub soon thereafter, just after I called Dan and told him what Damian said and he said he was coming home shortly. I told Damian Dan could read him a book or two and he got out of the tub.
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