We Go With Him

In Which Charlie Is Finally Exhausted After A Very Intense Week

Charlie was awake before 6am on Monday and asked for a bike ride. Jim sleepily assured him there'd be one after school. Charlie ran to the refrigerator and unpacked his lunch boxes and book bag.

I cut up an apple for him, made coffee and, as he paced and munched on the apple while eyeing the kitchen warily, put his snack and lunch in two different lunch bags and then put everything, including Halloween candy, into another bag (which Jim had been using). Charlie watched, solemnly snapped the bag's flap shut and said 'white car.'

He was still saying that up to one minute before the bus came whereupon he ran down the steps and walkway in a mad dash and we waved good-bye.

Jim and I went to work. Sitting at my office desk, I realized I had gotten used to segmenting thoughts and activities in 50 minute periods as it's at such intervals that Charlie wants to switch to another activity. A colleague, after hearing about Charlie's extreme anxiety bursts, said 'do you lose sleep over those?'. It was only afterwards that I realized I hadn't known what to answer because how can you lose sleep when you don't get so much (I'm not one to need that much sleep as it is) and when you're constantly listening in your sleep for your child?

I left work a little early to go grocery shopping (have to keep the lunch boxes filled). Charlie's bus pulled up just before 4pm. I had put the bikes out as Jim was planning to be home at 4.30. Charlie uttered a stricken cry as he ran up the steps and into our house.

His teacher wrote that the transition back was (as anticipated) not mellifluous and Charlie had cried on and off (that's all). Jim came home to find Charlie curling up on the beat-up blue couch with his shoes on and covering himself with a small fleece blanket that happened to be there. We figured Charlie would take a short rest and then a bit of a longer one after he dragged himself up and ran upstairs to his room.

Before 6pm he was asleep and, while he woke around 9pm, Charlie went back to sleep -- because, after days on end of disruption to everything (early snow, no school, a million tree branches on the street and not the trees), he was finally, excruciatingly, flat-out exhausted.

'It takes a lot of energy, all that anxiety,' as Jim said.

Charlie has Thursday and Friday off as it's the annual NJEA teachers convention. Fortunately he does not have Tuesday off as many children here do for election day. If he only had school this week on Monday and Wednesday after a whole missed last week -- for the nonce, let's not court anxiety and contemplate what that would be like.

 

Green Shirt Brown Pants Redux

So maybe the 'reverse psychology' strategy is the way to go.

Wednesday morning, Charlie took his time getting out of bed. When he did, he asked to wear his green shirt and I said,

'Let's leave it here so it'll be safe.'

Charlie arranged his shirt and pants in a neat little heap in a corner of his bedroom, got dressed in the clothes I had laid out for him, and soon we were in the car en route to the Big Autism Center. He knew he was going swimming and got right out of the car with bookbag, swim bag and coat. 

We'll see what happens tomorrow/Thursday with the 'outfit.'

It might seem that I am making a super big over-deal about Charlie wearing those clothes. I am starting to formulate a plan whereby Charlie has several of the same type and color of pants and a small array of t-shirts in different colors to choose from for his school clothes. If he can keep wearing different clothes for the better part of the day and then, perhaps, change into the green/brown combo later in the day (play clothes, right?), I think we can all live with it.

Charlie is definitely obsessive-compulsive. He often wants things to be a certain way literally, as when he lines up items on the floorboards or on the kitchen counter and also in a more abstract sense, as when he insists in a very hearty way that he has to do certain things in a certain way (such as, only wearing a swimsuit to run onto the beach and into the water, even when the temperature is in the 30s and the surfers are all wearing wetsuits). Past (often rather) painful experiences have shown that some obsessions, once too deeply embedded, can lead to really difficult moments, as if Charlie is somehow weary himself of the 'old order' but not sure (and even scared) to let go of it.

At Charlie's IEP meeting on Monday, we ended up talking for a good 10 or more minutes (at a meeting of about an hour) about the green shirt and brown pants 'fixation.' Strategies we discussed included: making a social story on Charlie's iPad (did that, though I think it may have alarmed Charlie overly much) and having him put the clothes into the laundry machine (I want to work on this, though I do respect Charlie's careful arrangement of his clothes in their designated spot in his bedroom). Another suggestion was to cut a little piece from the shirt each day until it became just a square; Charlie's teacher herself thought this idea might not be the best for him, as Charlie might end up being more anxious over such a drawn-0ut process. (And the same cutting-a-bit-away process was tried for an old blanket Charlie used to have at another school; he was never so attached to that blanket as he was to the shirt, though, and didn't seem to care too much what size the blanket ended up.)

For a moment at the IEP meeting I found myself thinking, we are spending too much time on this!  And then I said to myself, this is the way it should be. Charlie periodically gets 'stuck' about something and often has a hard time letting go and moving on, so the extended conversation about how to address the green shirt and brown pants was in many ways a discussion we have often had and will often have to, to help Charlie learn and grow and deal with change.

And he does have a big change coming up. Charlie turns 14 in May and, after this school year, he will be moving onto a secondary school classroom. There will be 9 students in his class (vs. 6 in his intermediate class) and he will switch activities and even rooms every 1/2 hour - 1 hour. 9 students is a bigger class than Charlie has been in but I think he'll be all right with it. I do think he'll like the more frequent activity and room switches: It often seems that Charlie's attention span for most tasks is about 1/2 hour to 1 hour and he likes to keep moving.

I've been taking my time to write up Charlie's IEP meeting: It really was a friendly, productive discussion and exchange of plans and ideas (so maybe I'm savoring the good vibes and not feeling any rush to spew and vent, ha). The topic of what we envision for Charlie after he is (GULP) 21 and finishes school was brought up: I've thought about this and written about it for the past several years, so I was very ready with my answer: a job, preferably in the community and full-time but part-time and even in a separate setting also all right if that is what Charlie needs; housing in a group home or some sort of supported living environment in the community but only when we find one that is appropriate.

Charlie's teacher talked about how well he has been doing learning various pre-vocational skills, doing things like assembling sprinklers. He apparently enjoys doing these things, too.

Sometimes having a rage for order can be a good thing.

Little Happinesses

Charlie's teacher noted that he used the self-check to check out his groceries on his class's weekly grocery store trip Friday.

That little note made me very happy.

The thought of Charlie able to do something so basic and essential to taking care of himself just really excites me. There is so much that Charlie is not able to do---like knowing that he's in a bad situation and figuring out how to get himself out of it in a way that doesn't involve hurting himself---hearing that he can do something like check out groceries he's gotten with the aid of a shopping list: It's a big wow.

Another was the way he held himself together on Friday afternoon, in the midst of anxiety and discomfort brought on by his stomach bugging him. Charlie had had a good day at school, though he seemed a bit irked that the person driving the white car (both there and back) was yours truly, instead of Jim, who'd had to go into New York to do some work. (I've done the lion's---lioness'?---share of the dropping-off and picking-up over the years and I'm quite glad to hand over the title of Parent Chauffeur any time.) We stopped at a convenience store for snacks and I successfully, and quite easily, persuaded Charlie that two brownies were sufficient (a boy can only eat so much cake, or cake-like items). Jim got home shortly after we did and he and Charlie went on their usual bike ride, after which Charlie came inside, took off his bike helmet, and stood looking at us expectantly, saying 'I want.'

We ended up back in the white car. I had a feeling that Charlie wanted a long ride, or wanted to go to the local fair we've been patronizing. The rides wouldn't be open till later in the evening, though, and random drives hither and yon just to pass the time have lost their charm for Charlie (a good thing, I think). I needed to stop at Walgreen's so we drove there, with Charlie saying a string of 'no, no, no' and me 'uh-huh' and 'uh-hmm'-ing it. We passed through the drive-through pick-up line at Walgreen's and I continued to drive 'local.' Charlie didn't say 'that way' or 'this way'; his eyes flickered rapidly from side to side, from window to window, and he wasn't smiling. He said 'no' to any stops and, without further ado, I drove us back home, we got out of the car, Charlie and I went inside, he took care of business (i.e., the reason he'd looked less than at ease from the time I'd picked him up from school), I felt quite glad that we'd not attempted any long rides.

I thought about the one thing I think I've learned this year: For whatever reason, when Charlie is really asking and asking for something in an obsessive, anxious way and looking haunted and strained, it's best not to actually get him whatever it is. It's perhaps as if he is testing Jim and me, seeing what we'll do, and (perhaps again) all wound up in his thinking is that tiny thread of trust, that we're going to make some sensible decision that doesn't involve getting him what he's saying, and just go home and rethink things, because home is home---the best place for neurological storms, though July has not been a very stormy month for us.

(Though, alas, the autism news in general this summer has been really really tough.)

As the sun was going down, Charlie requested bike ride #2 after which we went---you guessed it---to the fair. Charlie made a beeline for the DropTower. This being his fourth time on this Frog Hopper on hormones, he had the routine down of where to wait and how to seat/harness/whatever you call it down and fasten the buckle. He smiled for the first time going up and, after the ride had dropped speedily down in one straight swoop, undid his belt, gave himself a bit of a shake, and got up and went down the stairs to the grass. We over to stand in line for the giant slide (and to get bit by many pesky mosquitos). Charlie always likes to wait at the top for the other kids to go down (three people can go at once). He stood watching with his hands tucked under his chin, then got on his burlap bag and went down quite speedily.Then he wanted the car. 

We got home before 9 but it was almost 10.45 when Charlie went to bed. He listened to music for awhile and then got up and stood next to his shoes. 'I want' was said several times. We were quite sure that Charlie wanted to ask for a walk but it was too late. I answered 'yes yes' to Charlie's 'I want' 's and we went round and round with that for a couple of minutes, neither of us saying the word on our minds, 'walk': Just saying the word (even if preceded by 'no' as in 'no walk') is enough to set something going in Charlie's mind that means a walk is--must--will happen, and it's impossible to persuade him otherwise.

Then Charlie said 'bedtime' and, after grabbing his blankets, ran smiling up the stairs.

He has been testing us, and I'm happy to say it.