May 2001 page 1 of 2
|Tuesday 1 May
He woke up at four a.m. crying. I brought him to bed and he kicked me the rest of the night. So I decided we should skip school. This often seems to happen when he's going through a developmental spurt -- his sleep gets disrupted. And he certainly seems to be expanding his abilities. He's starting to not even need to hear the word before he says it. Just say, "Damian says, 'I want...'" and he says "I want a gummy bear" or "I want juice." It's there and he has access to it. What a long time coming!
Today at OT, he told Heidi (in a whisper), "I want to get out of the swing." She was way impressed, counted the words. Thing is, he's had that capability for several months, it's just been more uncommon that he could summon the words. It's getting easier, though, clearly. So I expect he'll be talking for real -- full sentences and all -- in not too much longer. Maybe a matter of months.
Heidi worked on food today. We brought cooked peas and she squished them with Damian and had him kiss them and put them in his mouth. He spit them out again but didn't get upset. Baby steps.
She put him on the exercise ball again, the first time since his very first session with her (three weeks ago?). Back then, he clung to the ball and to her, just short of panicking. This time, he sat on top, at ease. Amazing difference.
He bonked his head. Cried a lot. I put ice to the swelling. He hated the idea. So I held the ice up and let him lean into it and then away. That did the trick. He got to be in control of how cold it got.
When I told him what we'd be doing tomorrow, he started crying when I got to "we'll go to school." This concerns me. He seems to have fun there but he's developing an aversion to going. I don't know if it's the thought of being there without me or of being challenged or the newness of it or if there's something I should know.
I washed his hair tonight again. I explained the whole process. He was more comfortable than he was even last week. No crying at all. And we figured out how to get him to tilt his head up to rinse: first I said, "look at the ceiling" and then Dan held a gummy bear above his head so he could look at that. That's probably the first time we've been able to properly rinse his hair after a washing. He's never tilted his head before no matter what we said or tried. Either we're getting more clever or he's getting more responsive. Or both.
Wednesday 2 May
Heidi tried him on the shaving cream again today in OT. Didn't go over this time. I can't help wondering if it's got something to do with the little girl, her therapist, and her mom, all in close quarters nearby. Not that he's self conscious but that he might have been overwhelmed. But then Heidi brought out a cupcake for his birthday (it's Saturday), and first he blew out the candle, then he picked off sprinkles and then he ate cake and she slipped in some frosting too, which he went for. The texture was clearly suspect but it tasted good.
Tonight as I brought Damian onto the porch to wait for Dan's arrival, I told him what would probably happen: Daddy's car will pull into the driveway, he'll get out, you'll say "hi Daddy", he'll hug you, you'll give him a kiss, etc. Well, when Dan was sitting on the porch swing with Damian on his lap, the little guy suddenly waved at his daddy and then kissed him. Remembering the sequence I told him about. I thought that was cool.
Thursday 3 May
Dan's reading to him right now. Just got to a page with a boy sitting in the cab of a digger pulling levers. Damian grabbed hold of Dan's fingers and started pushing and pulling them, pretending they were levers. He initiated symbolic play. That's important. That's lovely.
He woke from his nap extremely grouchy, and burning hot. When I asked if he felt sick, he nodded. Poor kid was a cling monkey all afternoon/evening. I spent over an hour rocking him on the porch swing. I think he liked being outside.
He's regressed a bit the past day or so: whispering more, forgetting to talk aloud, and when he does talk aloud, it's more pronounced echolalia. And his eye contact isn't as present. But he's still present, still responsive, shows no perseveration or other autistic behaviors. A mild regression, and in a sense a good benchmark of how far he's come.
We gave him pediatric Advil in a dropper. It's always a fight to get the sticky goo into a struggling kid. His sensory/taste issues magnify a normal child's distaste for the stuff. Not tonight; we just explained that it wouldn't taste good but would make him feel better, and he downed it like a champ. I was so impressed.
My mom left this morning. I asked him later if that made him sad. He nodded. She called tonight and I put him on the phone. He whispered "hi grandma" to her at one point. He's usually silent on the phone.
Friday 4 May
Sick boy woke up in the middle of the night. Poor kid. Did a lot of snuggling today, and was extremely cranky on and off. Not as much watching TV as you'd think. His out-loud voice is coming back, as is his ability to finish the "I want" sentence without simply repeating your words. He's not all the way back, but it's still a big relief.
He played hide-and-seek tonight with Dan -- his new hiding place is behind the couch. It was funny to watch -- as Dan "looked" for Damian and kept up a running "Is he behind the ottoman?" sort of commentary, Damian shook his head each time.
Sunday 6 May
So Damian was sick on his birthday (yesterday). Still had a good day, though he got cranky in the evening and was asleep on my shoulder by nine. I settled him down beside me and he slept on and off till 2pm today! Not an easy night/morning, though. Lots of waking, usually with a few tears of discomfort. He slept on me, he slept on Dan, he slept between us, he slept with his head resting on my shoulder and my arm beneath him (my arm may never be the same). Last night his temperature was nearly 104 and he didn't feel as hot as he did the day before, so it was probably over 105 then. Poor kid.
Fever broke today, though -- he was cooler and clammy. He was actually off advil for much of the day. Which was good not only because I hate giving him that much medicine, but also because he didn't have that artificial "I feel fine!" burst of energy. He stayed put most of the day, watching videos and listening as Daddy read him books. Movies are tough these days, though: he gets upset when the characters are in peril, which happens a lot more than you'd think in these kiddie movies.
I told him I was going grocery shopping. He didn't want me to go. So I stayed a bit longer and cuddled before leaving. Apparently he started crying ten minutes after I left. Dan asked him if he was mad. Damian shook his head. Was he sad? Damian shook his head. Did he miss mommy? Damian nodded. So they sat on the porch swing and waited for me to come back. When I did, I snuggled with him on the porch swing while Dan put away groceries. It felt good to be wanted.
This evening Damian did not want to take a bath. So I took one. I said I wanted company in the bathroom, I was lonely. So Dan brought Damian in. I played in the tub. Damian gradually got interested in my antics. I asked for a hug. He leaned over to give me one. I asked if he would sit in my lap. He agreed. So we got him undressed and he sat in my lap in the tub. Playing together. In fact, he got so engrossed he didn't want to come out!
Monday 7 May
He was sluggish all day. When I changed his diaper, he just lay there on the changing table, glazed. I asked if he wanted me to rock him. He nodded. I did. He was asleep in a few minutes. After his nap, he was a whole different kid. Energetic, hungry, and did I mention energetic? What a relief. I mean, you know it's just a virus, but it's so very hard to watch it deplete your child and make him so miserable.
He's developed a new quirk: when you read him certain books, he acts out the words. Tonight he got up and "walked" in place in the armchair when Dan read about Harold (he of the Purple Crayon) going for a walk in the moonlight. Last night Dan read a book wherein a character hugs the moon and kisses a star and Damian took his fingers and "hugged" the moon and then brushed the page with his lips in a kiss.
He started actually using his (birthday present) easel to paint today. Heretofore, he'd just flip up the caps on the paint jars and then flip them closed again. Perseverative. I'm glad to see him painting. I thought it might take some convincing. He used the whole page, too -- no more "just the bottom right corner for me" paintings. But he still mostly dabs rather than using full strokes.
Tuesday 8 May
Damian was back to normal today, if you ignore a bit of phlegm. We skipped school but went to OT. Damian did very well with some things: he stood up on the large flat swing to string beads, for instance. But not so well with others: he freaked when Heidi had him take his shirt off. Fearing the shaving cream. She put him in the tub of beans (his fave) to calm him, but it didn't entirely work. And when the shaving cream moment of truth came, he was horrified. He said, "clean up." On his own, loud and clear. Wanted to get it out of there. So she did. She did end up getting him to help clean it up, though -- which involves a thin paper towel, therefore some of the shaving cream sensation, and "accidents" where the cream touches his bare skin. He was unhappy but not desperately so, and he did help clean up.
Then came a favored toy: she had him lie on a firm bolster and reach forward to stick suction balls on the mirror. I took a lot of pictures trying to capture the right moment. Damian whispered, "no flash." So I turned off the flash.
While Dan was preparing dinner, I chased Damian around the house. He stopped in the kitchen to check out the fixings and took a carrot. I told him bunnies eat carrots and asked if he was a bunny. So he pretended to nibble on the carrot. Didn't take a real bite, though -- instead, he fed it to me.
Damian ate part of Dan's peanut butter and jelly sandwich this afternoon. Dan's been trying to get him to take a bite ever since Saturday, when Damian devoured a whole sandwich (a big first). Today he did. Good going.
Bath time is back to being a pain in the butt. Damian won't get in unless I get in first and coax him, asking for hugs and such. He ends up on my lap in the tub and then enjoys himself. I'm getting tired of these nightly baths, though. But I did successfully wash his hair again. That makes three times in a row with no tears. Now we up the frequency.
Wednesday 9 May
Damian's first day back at school post-flu. Daddy's first day driving with Mommy and Damian to school. Damian's first day since Week One wherein he clung to a parent and refused to let go. Dan stayed in the classroom. Damian didn't let him get farther than a foot away, it sounds like. Daddy Separation Anxiety?
Dan said it was good to see the classroom in action. He liked what he saw. He said, among other things, that the tasks they give Damian are just a bit harder. For example, they asked all the kids to choose between two colored shapes, three at most. They asked Damian to choose between four. He chose right away (unlike the other kids, who had choosing problems), so they asked him to say the color aloud.
Damian did a lot of echoing while Dan was in the room. May (head teacher) told Dan that this is not her usual experience with Damian. Apparently he does talk aloud a lot, but genuine responses, almost never that non-listening echolalia. Reassuring to hear.
He panicked when we got to Heidi's. Didn't want his shoes off. That's a first. Dan went to the waiting room in case it was more Daddy Separation Anxiety. Heidi stripped Damian down to his diaper and gave him a massage, using hand lotion. He liked it! He got very relaxed. Dan came back in and Damian was mostly okay after that. He even brushed his teeth with a dry toothbrush. Got squeamish once the toothpaste was on, though.
Laura got him to start responding more with less echo. She gives him choices: "do you want the mango or the truck?" (knowing he wants the mango, putting that one first so it's not just an "echo the last word" deal). He's been doing much better with verbalizing his desires all day. If you say, "Damian says," he'll say "I want yogurt" or whatever. Admittedly, sometimes he needs a bit more, but boy have we come a long way! He will still rarely come out with anything on his own, though. He needs us to set the context.
He had an exhaustion meltdown tonight. Skipped his bath. Didn't want PJs. Didn't want slideshow. Got slideshow. Got interested. Then wanted PJs. So it goes.
Thursday 10 May
This morning Dan said bye to Damian just after we entered the classroom. Damian cried but I was there and that helped. He started trying to cling to me the way he had to Dan yesterday. I attempted to act boring and just sit there. It's worked before; he's spotted something intriguing and wandered off. Not today. He was a determined clingmonster. So I got him to fetch toy cars and hand them to May (across the room). He did but always came back to me. May came over to play. That was semi okay. Still not a huge success. We started talking about how I'd go potty in five minutes, etc. He didn't look crazy about the idea. I finally got a clue. I asked if he was scared. He nodded. I asked a few other questions and talked about how he was feeling, asked if he liked May (he nodded) and she said she liked him too. And that was all it took. He gradually allowed her to play with him and I said goodbye soon after with no fuss. Whew.
Boss Lady came over for a second floor time assessment. She had success engaging him in play. Said again that he seems above his age level cognitively. She said he's got so much going for him, he's a kid who really needs floor time 100%, no ABA. We concur. Her feeling is that ABA teaches by rote and he's got rote learning down cold. He needs the challenge and stimulation of the developmental approach.
As we were talking, something clicked for me. Damian's very good at a lot of things. So much so that it's sometimes tempting to imagine that he's not autistic. But he's got one big problem: it's hard to engage him in a true back-and-forth interactive game. He can be very interactive, instigating a game and elaborating, if it's physical and silly. But he still tends to just follow your lead and not think for himself when he's playing an imaginative game. It goes along with his not being able to walk up to you and say "I want to go outside" or whatever he may want. He indicates it and will say it with just a little prompting now; he's come a long way. But a true, comfortable spontaneous interaction isn't there yet.
On the other hand, at one point Boss Lady turned on a bubble blowing machine. It blows bubbles out in a fast stream. Damian liked it but was a little uncertain when she brought it close to him. So the next time she started it up, he grabbed a ziplock baggie and shielded his face with it. He could still see but was now protected. After that, he really enjoyed the bubbles. We thought that was very inventive of him. So he certainly does think and respond in interesting ways. There's just not an easy back-and-forth, at least not often enough.
I played Itsy Bitsy Spider with Damian tonight for the first time in ages. The first iteration, I held his hands and modeled the actions. The second time, I simply did it. He started to copy me when I sang "down came the rain", and followed along after that. I was delighted. He never ever used to even try.
I unearthed the cymbals and clapped my hands as Damian clapped the cymbals. Dan came over and started singing "I've been working on the railroad." Damian kept perfect rhythm for the whole song, far as I could tell.
He decided he was ready for bed: he started peeling off his socks and thence to the rest of his clothes. Came into the bedroom in only his diaper, then took that off. I put his PJs on and we settled in to watch the slide show of his day. When that was done, he refused to read with Daddy. Or to rock with Mommy. He wanted the slide show again! And again after that. This has started happening the past few nights, though not this emphatically. He wants to see the pictures of his day more than once. I think it's starting to mean more and more to him.
He's also playing more imaginatively on his own. Yesterday he played with his Little People dollhouse on his own; I watched from a slight distance. He put Officer Mommy (policewoman who looks like me) on the potty and Daddy in the bathtub. Dan tells me Damian later put Bendo Alex (the boy) in the bathtub in that (larger) dollhouse, brought Bendo Daddy over to sit with his son, and put Bendo Mommy in the tub too (I've been getting in the tub with him lately; it's the only way to get him to bathe). Then at Dan's suggestion that they were done with the bath, Damian put Alex and Mommy on the bed to watch pictures. Daddy took a bath by himself. (Dan does like to take baths.)
The other day our (red) car nearly overheated. We had to stop and open the hood, then bring it in to the mechanic. Tonight Damian saw the engine under the hood of his red toy car, brought it to his Little People garage, and started pressing machine noise type buttons. Very very cool.
Boss Lady says typical three year olds are just learning to play these kinds of imaginative games, so Damian's not far behind if at all. It's reassuring to hear, though I wonder just how true it is. I do think he's catching up, though.
Friday 11 May
Laura and I discussed Damian's echolalia today. He continues to mostly echo when he talks aloud and reserve his original commentary for whispers. She's suggested offering choices, which we've started to do. Today she said also get him to say what he's doing -- "I am jumping", for example. I don't think this is to directly break the echolalia as much as to simply get him to start thinking about speaking out loud in other contexts, not just when he asks for something.
She also said she'd spoken to his nursery school principal, and they both agreed he's very smart.
He's been reluctant to do things on his own lately: he wants to be fed rather than feed himself, he wants to be carried (I won't but Dan sometimes will), he wants me to flip up the lid on his sippy cup. Maybe a residual effect of being sick and being cared for? Maybe a reaction to being asked to do so very much?
He shut himself in the closet this afternoon and got scared when he couldn't turn the doorknob to get out. Dan thinks he heard Damian say "in here!" but I only heard crying until I got close, and then when I talked to him, he definitely said, "help me out!" Out loud. So the words are there when he needs them, or starting to be.
Have I mentioned that he's become enamored with the cat again lately? He loves getting down on all fours and crawling after Dante, pretending to be a cat. Tonight he started mewing, not saying "meow" but really "mmmmrrr" just like Dante does. And when Dante plopped down on his side on the kitchen floor, Damian followed suit.
Saturday 12 May
Dan and I were both pretty wasted today, so poor Damian had to keep trying to coax us to play with him. Felt bad. Felt like we should be pushing ourselves harder, the little guy needs it. But he did okay nevertheless.
This morning I took out a few cat toys -- a string with a furry mouse on the end, a wire cat bouncer . Damian grabbed them and gleefully shook them on and around the recumbent kitty. Dante responded warily, but responded. Damian let out a burst of out-loud language. I didn't catch much of it, but I think he said "I catch you, cat", among other things. He was fishing for kitties and chatting about it a mile a minute.
He and I played with fire trucks: I said the cat was on fire (well, he is red) and we had to push our fire trucks over and drive straight up Ottoman Hill to put the kitty fire out. I was pushing the Little People fire truck, Damian had a more standard model with a cherry picker crane. So I had the firelady (woman fire fighter!) climb into the cherry picker and hose down the cat. Damian liked this a lot. Periodically through the day he'd have her climb up to the top of that crane.
The cherry picker broke, so I suggested we bring it to Mike the Mechanic (Little People person) at the (Fisher Price) garage. Damian fetched Mike and held him next to the truck while I set the scoop back onto the crane. He definitely is starting to get this whole pretend play deal.
He led me to a table, wanted me to pick up his sippy cup of juice and hand it to him even though it was well within his reach. I didn't. He had a meltdown. Just refused to get it himself, even if I held my hands around his. He used to be like this -- he used to want to be taken care of, to be passive. I was so relieved when he developed beyond it but it looks like we're right back there. Dan thinks it's about control and that it's related to his being back in school after being sick. He has no control over that, so he's going to exert control over us where he can. Could be. Or maybe it's a simple but unfortunate regression.
On the other hand, we went for a walk around the block with his popper toy. When he got bored of pushing it, he just slung it over his shoulder and carried it. Used to be he'd hand it to me and I'd have to lug the thing the rest of the way. So he's got a certain independence/responsibility thing going still, but only in certain situations.
Dan read Damian I'll Love You Forever, by Robert Munch tonight; it's a book about a mom who sings "I'll love you forever" to her son every night from infancy to adulthood and on to when she's old and dying. It's a strange book in some ways but never fails to make me cry. Dan says it has the same effect on him. Anyway, it shows the sequence of the boy growing up -- infancy, two years old, six years old, teenager, etc. Damian became enthralled with turning the pages today, going back over it. He's picking up the concept of sequences and the passage of time, I think from exposure to our nightly slideshow of his day.
I used this sequencing ability later. He didn't want to take a bath. Nothing new there. I said he could play for five more minutes or he could take a bath now. He shook his head to both choices. So I sat him in my lap and asked if he was tired. He nodded. I said taking a bath was the first step toward going to bed. Bath, then PJs, then slideshow, then books, then rocking and sleep. I went over it a couple of times and then asked if he was ready for his bath. He was. We walked down the hall to the bathroom hand in hand and he got undressed without a demur. (Of course, he cried as soon as he got into the tub and was very cranky about his toys, but that was simple exhaustion.)
Sunday 13 May
Dan got Damian to ask him, "Daddy, fix" this afternoon with absolutely no coaching. It was his fire truck's cherry picker basket again, and I guess Dan had coaxed Damian to say "Daddy fix" a previous time, so it was still in his head. I was impressed. And earlier, Damian was pulling me by the hand and I was offering him variants of "Mommy, sit? Mommy lie down? Mommy come?" and he chose "Mommy, go!" which was not one of the options I gave him. Which is exactly what I wanted. We've been working big time on language, trying to get him to talk as much as possible, and aloud. Looks like it's starting to pay off in these flashes of non-echolalia, only semi-prompted out loud speech.
Speaking of echolalia, Dan pointed out something interesting: Damian often does repeat all of what you say, but he mumbles the part that comes before what you want him to say. For example: "Damian, can you use your big voice? 'No, Mommy.'" He'll mumble everything until "No, Mommy," which he'll say clearly. It's as if he's replaying it aloud until he gets to what he needed to hear again.
He's been stimming more these past few days: spinning a bit, running in circles, watching his hand as he uncurls his fingers slowly (looks as if he's on acid), flapping his hands when he's upset/frustrated. It's been bothering me but it oddly coincides with this language/imagination burst that's quite impressive, so it's hard to take it too seriously. Maybe he needs the self-organization stimming provides him more right now because his brain is working so very hard developing.
His imagination is really blossoming in clear ways. Dan says there's a picture at the back of the Little People City's fire station: a picture of fire fighting gear. Damian takes his firelady in one and pretends to pluck the helmet, the boots, etc off the picture. Getting her dressed to go out. Nobody showed him, he came up with this on his own. And Dan was getting Damian to drive Farmer Jose in the fire truck, give him a ride around the table. Damian did him one better: he brought the doll/fire truck over to the cat tree, extended the ladder, and had Farmer Jose climb the tree. Trees are probably on his mind from seeing the tree cut down in front of our house, so he extended that into his play.
Tonight in the tub, I told Damian I wanted to wash his hair. He shook his head. I talked him through the process, step by step. He listened, especially after I told him his hair would stop itching once it was clean. Then I had him wet the washcloth so I could wet his hair with it. But he turned the tables on me: he put it on my hair! And then scooped up some of the bubble bath bubbles to soap my hair (well, I suggested this part -- I thought I might as well get him to go through all the steps on me). After he rinsed my hair with the washcloth, I washed his hair, telling him it was the same as what he'd done to me. He did okay with it.
I was rocking him tonight to one of our usual CDs. At the end of "Mama's gonna buy you a mockingbird", right around "you're still the sweetest little baby", he turned around and kissed me. About four times in a row. Maybe because I'm always saying how sweet he is? I melted into a puddle of goo on the spot.
Monday 14 May
This morning Damian did NOT want to be in school. Did NOT want me to leave him there. Did NOT want to do anything that took him more than, say, an INCH away from me while in the classroom. So I said goodbye and left. I've learned there are times you just have to wince, grit your teeth, and walk away. He cried... about fifteen seconds. I could hear his cries diminish into quiet as I walked down the hall.
The scenario was repeated this afternoon. Jami came. Damian was fine with that till I told him Mommy and Daddy were going to a movie and Jami would stay and play with him. Oh, how he cried. No amount of soothing helped, so we left. As we got into the car, we heard no crying. He was fine. Had a good time with Jami.
Same, actually, with getting into the tub and then getting out of the tub tonight. It's a transition thing and a control thing and boy do I feel like a parent when I just go ahead and ignore his wishes, but there's a difference between listening to your child, being responsive and respectful, and giving in to every wish. There's an essay here, one I'd like to write and ponder.
Dance and Jingle: Damian happily participated from the get-go. Nancy (teacher) commented to Janice (fellow mom/friend) that Damian's been the only kid in the class who does all the movements she asks from them (raise your tambourine in the air, clap, tap your shoulders, or whatever the song calls for). I think they're both amazed that he does; it's very non-autistic of him to be so responsive and attentive. He really likes it there, and he likes that sort of circle time activity in general. But he faded when they broke out a microphone and asked the kids to first say hi (he did, with coaxing) and then sing a song (no way!). Took too long, felt too intimidating, and he just checked out. Even when the mic was gone, Damian wasn't as into the class as usual. Too bad, it's usually a highlight of our week.
Tuesday 15 May
When I went to Damian's classroom to pick him up, he lit up when he saw me, and said -- loud and clear -- "Mommy!" I stood back for a moment to take a picture. He waved "hi" to me.
On the way to the car after school, Dan and I were talking about eating the sandwiches we'd brought for lunch. As soon as Damian got into his car seat, he pulled the cooler toward him, opened the top, and pulled out a pb & j sandwich! Guess he got hungry listening to us.
We went to a park for lunch. Damian got upset because his shoes got sandy. I took them off, socks too, and encouraged him to dig his toes in the sand. He did, and I think enjoyed it. Then he wanted his shoes back on. But we wandered out of the playground to this grassy area by a pond. He wanted his shoes off again! Took his own socks off. And then sat by the water's edge and dipped his bare feet into the water. We were in shock. He wanted to walk across the pond (it's manmade and has a ridge just under the water). We discouraged this. He ended up running around for a while with bare feet. A big first.
Of course, then he didn't want to take his shoes off at Heidi's. Go figure. She did get him to brush his teeth, though. He asked her (in a real voice) to "help me on swing."
He also told me, "Mommy, go away," with no prompting this afternoon when he wanted to play with Dan and not me.
He did more whispering today, though, and lots of echoing. Two steps forward, one step back. I suspect it was mostly exhaustion, though. We haven't gotten this early-to-bed, early-to-rise deal down yet.
copyright 2001 Tamar