January 2002 page 2 of 2
Wednesday 16 January

Damian comes into class now and immediately goes over to an activity. This morning he wandered around, checking out the playdoh table, the garage setup, etc. before deciding what to play with. Linda commented that he used to just stand there, not doing anything at all. I said yes, great progress, but he still holds his head and body tightly. Still anxious, just less. But their work is already paying off, and that's reassuring.

When I came to pick him up from Robin, she said she did a lot of loud-soft work with him, having him say "higher" on the swing in a high voice, and "lower" in a low voice. She also had him be the leader, following him, walking like him, etc. Simple stuff, in a way reverting to how we worked with him in the summer. But I think he needs to return to the basics at school, build up his confidence that he can do it in that overwhelming environment. She also told me that she was five minutes late to work with Damian. He was playing hide-and-seek with Linda, shrieking and having a good time. When Robin apologized to Linda for being late, Linda said it was actually good, that she needed the time with Damian. That makes me very happy. Linda is really working at building a rapport with him. It will pay off in so many ways.

Later, Kahuna came to work with Damian at home. He told me that he observed Robin with Damian and that he was surprisingly nonverbal. He sees the contrast between school-Damian and home-Damian, and what a contrast it is.

Damian at My Gym: did everything, did it well, stayed focused nearly the whole class. Even raised his hand to do one of the gymnastics exercises. I was proud of him.

We've noticed lately -- I don't know if I've mentioned it here -- that Damian only seems to stim when he's either tired or anxious -- but it's more than anxiety. He specifically does sensory-seeking things when he's feeling an emotion he can't handle, usually upset or sad. When we get upset, for instance, and he's upset as a result. Or when something happens that upsets him. When Jami left Sunday, Damian immediately got sensory seeking. He felt sad that she was leaving and couldn't directly access that emotion, so it went into his body and threw him off kilter. The really good thing about this realization is that when we see him start, we can think back about what just happened and talk to him about his emotions. It often cures it instantly. He can recognize and deal with the emotion and his sensory world restabilizes. Amazing, huh? This is one very sensitive child.

Thursday 17 January

Robin told me that Damian was on the tire swing yesterday and she was spinning him around. When he got off, he staggered. Dizzy. When I told Dan later, he said he's seen that recently too, that Damian's been getting dizzy. This is a very big deal to me. A very good thing. You see, many (most) kids on the spectrum do not get dizzy. They can spin forever. In fact, their vestibular systems are so out of whack, spinning is almost the only thing that makes them feel in sync, in balance. It gives them the extreme input they need. Damian never used to get dizzy. That he does now suggests that his nervous system has matured; his sensory system is now essentially normal, at least in this area. That has huge implications.

I'm seeing Robin finally clue in to his need for gross motor activities to get him revved up and truly interactive. I've said it several times, but I suspect Cheri witnessing it at the last clinic meeting is what did the trick: she communicated to Robin and Robin's putting it into practice. She said Damian was very verbal with her today.

Linda has been bringing Damian and one other kid from his class to the inclusion class for little visits, getting them used to the environment. Says Damian walks right in and joins the activity (circle time, I think). A good sign.

Friday 18 January

Linda was very happy to report that Damian was happy and playful today in class, that he had a great time playing with an "Elefun" toy -- you chase butterflies that shoot out from an elephant's trunk. He played with it alongside two other boys. He also (with prompting) used a big voice to tell a kid to stop pushing him. I think the difference is more that they're finally understanding him than that he's changing in any intrinsic way.

We spent the afternoon together in Santa Monica. I told Damian we'd be going to the restaurant near the dinosaur fountain. Damian remembered it, called it the "diner cafe." (Long story, but I first identified it as a cafe and he remembered.)

Tuesday January 22

Spent the weekend mildly sick. By today, he was downright miserable. Coughed so hard he barfed on the kitchen floor.

A few bright spots in the sick gloom:

In the middle of the night one night, Damian came to our bed crying. Wanted juice. After he drank his juice, he declared, "I feel better now."

A friend came over. Damian took one look at the four of us (himself included) in his bedroom and said, "It's crowded in here!"

Today I tried to offer him a cough-medicine lollipop but he wasn't having any: "I want just juice. Juice will make me better." Juice apparently has magical properties. Couldn't convince him otherwise.

Saturday 26 January

Hellish sick week. Damian gave it to me, I still have it and now Dan has it too. It lasts forever, this one. Damian seems mostly better today (though still almost no appetite) but oh-so-grouchy. He's had horrendous meltdowns every morning. Yesterday's lasted two hours on and off. Tonight he had one because I wouldn't carry him from the dining table to the living room. He sat in the middle of the floor crying. At least it wasn't screaming like it was this morning. Fact is, he was remarkably coherent. Talking the whole time. Demanding: "I want Mommy to carry me. I want Daddy to carry me. I want Mommy to come here." Etc. And upset, mad but not screaming, not out of control.

Finally Dan and I both left the room, went into the kitchen. Damian of course got up and went to the cat tree (a few feet from his sitting place). Sat behind it in the corner and started banging his head against the wall. Not hard, but... ugh. I went out and talked to him about how he felt. He admitted he was upset. Stopped the head banging. Came out (walking on his knees) and started the whole thing up all over again. I hugged him and told him nice things but I wasn't about to carry him, so I went back to the kitchen. Not long after that, Dan came out and Damian walked with him (holding hands) to his bedroom, where they played with Legos.

Damian seems to have a strong desire to regress to a time when he was taken care of and didn't have to do things on his own. He wants us to carry him, he wants us to rub his feet (both feet simultaneously, with both hands), he wants to sit in our laps at the dinner table. He comes to bed with us in the middle of the night every night. He's dead set against potty training. I guess it's natural after the past intense year, but it's looking like we're going to have to set some firm boundaries and stick to them. Like not carrying him.

We gave him Advil today for the first time since he got sick. He HATED the idea. Really fought it. When we told him the medicine would make him feel better, he said "Juice will make me better!" and kept insisting he drink juice and not take the medicine. But it did make him perk up. Which I pointed out later. Not that I think it'll help next time...

This morning Damian heard me in the hall, called out "Daddy!" I said "Daddy's in the kitchen." He changed to: "Somebody!" His new thing, using something, someone, anything. Experimenting with the words and their meanings. Can be very frustrating sometimes when he says "I want something!" but doesn't say what. Sometimes if you offer him something to eat -- pasta, say -- he'll say "I want anything else."

Sunday 27 January

Damian woke up in a good mood. What a relief! He's not sick anymore! Life can begin again!

Pretty good day until we were at the library. Dan made the mistake of carrying Damian over to me while I was checking out books. I should clarify: it didn't used to be a mistake, it's a normal enough thing to do, Dan didn't do anything wrong, but right now Damian reads it as "I got away with it once! Carry me again! Carry me always!" So when Dan put Damian down so I could walk with him to the bathroom, Damian collapsed at my feet, wailing. Somehow I got him into the bathroom without carrying him. Somehow Dan and I got him from the bathroom down the hall to the front door without carrying him. It took a looong time and a lot of crying. A library page loitered by us, watching. Another came up to Dan and tried telling him to get that yelling kid out of the library. Thing is, how do you remove a kid who won't walk and who you can't carry (because it would defeat the purpose and you'd have to start from square one)? Library Page #1 told Page #2 to let it go. He knew what we were dealing with.

Damian was fine in the car after a bit and fine walking in the rain to Home Depot (he's intrigued by the rain, talking about how it's raining and he got wet, watching the umbrella). He collapsed on the floor when we got home, wailing and wanting me to pick him up and sit with him on my lap. I said "Sure, I'll sit with you on my lap. Just come here and we can sit together." Not what he wanted. What he wanted, it seems, was a power struggle. It came out in various ways in the next hour. After he did sit on my lap, he then wanted to bonk me with his head. Something he knows I don't allow. He was trying to get my goat. I wish I understood what this was about, though in a way I know. It's a standard boundary-testing sort of thing. It's hard to be firm but gentle. You tend to get angry or feel like you're being such a meanie and you should just give in, but the truth is, neither response does him any good. I don't know what it's like with NT kids, but a kid like Damian will get stuck in a behavior and just get more and more demanding and controlling until you're pretzelling yourself to suit his arbitrary rituals with no end in sight. We need to teach him flexibility even if that means enduring a lot of yelling and some public embarrassment.

He ate a big dinner. Maybe part of this was plain old hunger? He's hardly eaten for days.

Monday 28 January

First day back at school. We were worried, but Damian did well. Linda said he went to the inclusion class again (heretofore referred to as Alan's class). Participated in circle time. Alan told her that Damian sang the ABC song with the rest of the group, albeit in a soft voice. But already he's participating more than he does in his usual class. So this is a good sign.

Streak reported that she saw James go over to Damian with a book, asking him to read it together. Damian agreed happily and they sat and read together. How very cool.

Rivka commented that he seemed slower moving than normal; still recovering. I'm moving a LOT slower myself. She had him do nonstressful things that gave him input: ball pit, trampoline, swing.

I'm starting to be concerned about her work with him. I like her and I think she's good at what she does, but she's not getting his full attention or cooperation, even after nearly five months. I've been watching and analyzing, and I think it's simple. She's not being silly or openly affectionate with him. Particularly silly. It opens him up like nothing else does. I don't know how to talk to her about this, but I think it's important. I suspect it's making her underestimate his ability level. Just like at school. He gets misinterpreted so easily, this kid.

I told Damian that Silver was coming to see him. He said "Silver's going to bring me toys to play with." She sometimes does bring a bag of toys. I liked that he was commenting and elaborating on what I said.

Silver tried to do some pretend play with him, but he's still recovering (hasn't done any real play of any kind for a week!) and really just wanted to toss things. So they tossed things down the hall at each other and had a grand old time.

Tonight we read Today I Feel Silly, by Jamie Lee Curtis, which is about moods. Damian guessed the girl's mood from the picture on each page and we talked about it. When I read the text, he repeated me, but with feeling. So I'd say "I feel sad" and he'd say "I feel saaad" in this sad little voice. It was wonderful. He's extremely expressive.

Tuesday 29 January

Touching base with some people this morning: Nora and Cheri told me a bit about the inclusion class plan: Damian and James will go in together (good). They won't have a floor time person with them, but rather a TA from their class. The TA is to be hired (someone's leaving this week) and will get to know Damian and then be able to transition between the classrooms with the two boys. All good. They're going in from 10 to 10:40, basically missing yard time with their own class. Not great in one sense (he likes it and the gross motor is good for him) but maybe good in another -- it often tends to be wasted time because Linda's not usually there. The idea is that this way he'll still have small group sessions with Linda and get to focus on IEP goals, while having circle time and play time with Alan's class.

They chose Alan's class because it's small on Tuesdays and Thursdays, so less overwhelming for Damian. They also switched the classroom (!) to make it be in a locale that will feel safer, more contained. They're really working to make it feel okay for him. I'm impressed.

He was in a good frame of mind when I picked him up. I consider this a positive sign.

Great session with Heidi. He wasn't intimidated by the loud, older kid there -- he usually is quiet when Jordan is around, but not today. He watched Jordan swing and grinned, enjoying the sight. He had fun. He also played with the shaving cream on his own: Heidi didn't get her hands in it at all, just directed him. He didn't need the modelling and was only slightly tentative diving in.

Heidi says the dizziness isn't necessarily indicative of anything -- all kids can get dizzy with too much spinning, especially when it's not under their control.

Ate a LOT at dinner. Catching up for his lack of appetite last week.

There was a moment tonight we thought we'd see a repeat of Sunday's "carry me" meltdown. We were at Good Guys. Damian bumped his head. Got overly upset -- he was tired. Calmed down. I needed to walk upstairs. He didn't want to go but didn't want me to go alone either. Clearly wanted to be carried. We walked with him between us, holding hands. He sort of sagged, wanting us to lift him. We wouldn't. We braced ourselves. But then he said, "Mommy make me better." I said, "Should I kiss your head where it hurts?" He said yes. I did. I said, "Okay, you're all better now." And he was. He held our hands and walked up the stairs. Whew.

Wednesday 30 January

Robin glowed after her session with Damian today. Said it was their best ever. I gather they were loud together, shrieking and such, and that he was very interactive. She taught him the On Top of Spaghetti song and they acted it out with playdoh spaghetti and meatballs, having the meatball roll out the door, etc. I'm so glad. She's finally getting to see the real Damian.

At My Gym, I watched as Damian got nervous walking on the see saw. He's still so tentative with balance beams and see saws. Anything that throws his balance off too much. He's gotten so much better but isn't all the way there yet.

During free play, Damian got caught on the trampoline next to a girl who was jumping very vigorously. He had this trapped look in his eyes. I asked one of the teachers to rescue him. He sure enough wanted out but hadn't felt able to escape.

The staff played hide-and-seek with the kids, having the kids as a group find them. Damian really got into it. When the kids were asked to shout aloud, I heard his voice above the din, and he kept exclaiming afterwards. It was so good to hear him.

We went to a pharmacy. Damian wanted to carry the shopping basket. Realized it was too heavy. I asked if he wanted me to take it. He said he wanted to carry it with me. So we each took a handle and carried it through the store. I was proud of him. He's been taking on more such responsibilities lately: if I say Dante's hungry, Damian nearly always says he wants to feed him -- and does. Says he's giving him Dante food. Hee.

Tonight Damian was digging through the shopping bag. Pulled out two boxes of earplugs (two different brands so two different colors). Brought them over to me and asked, "Which do you want?" I was amazed. It's not what you think of when you imagine a child's early questions, but it is sure enough a question. Also is thinking of someone besides himself.

Thursday 31 January

Damian was less up when I went to pick him up from Robin. She said it took her longer to get him going when she picked him up from class, too. Either something happened that bothered him or he was just tired. Who knows. Anyway, she showed me some of their games and in so doing, he got happy and shrieky and had a great time. (Games: Damian as meatball from "On Top of Spaghetti", rolling "out the door"; a shape sorter toy as hungry monster that Damian has to feed; crash dominos (car crashing into dominos).) I like that she's folding in more pretend play scenarios as she does silly, high energy games. Smart, and exactly right.

When we got outside, Damian stopped on the path. Said "Which way do we go?" and pointed in two directions. I went with it, saying "Which way do you want to go? Up on the hill or out the gate to the car?" (The yard has built-in hillocks to make a more interesting terrain for the kids.) Damian wanted to go to the hill. When we got there, he said "We're going to have a picnic on the hill." So we did. I laid out the contents of his snack bag and he ate lunch. After lunch, he wanted to stay and play. Robin and Streak had come outside with their two floor time charges. Damian liked watching, and he even got involved in running around with them. We played and then when I got tired, he played on his own, for nearly an hour and a half. I coaxed him out by telling him we'd go to a store and he could pay for the things we bought. He likes paying so he came willingly. (About the "which" questions today and yesterday: Robin tells me she's been asking him the same basic questions. He's modelling from her. Which is cool. That's how you learn, by modelling. The important thing is that he's trying it out in appropriate ways.)

I'd bought Damian some cool scissors at the store. He wanted to cut with them. Gamma asked him what he wanted to cut. He said "I want to cut lines." So she drew circles, squares and the like. She showed me the results -- he cut very neatly along the lines. He's come a long way in his fine motor control. Gamma says he still has a tendency to want to round corners, though. It's easier that way.

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