We Go With Him

Tumult In the Inbetween Time

Charlie's working through a change (an increase) in dosage for one of the medications he takes, along with transitioning through ESY ending and anticipating going to camp on Monday. I didn't realize how serious and solemn his expression was when I took the above phone in Jersey horse country Friday morning. Jim said he was solemn on the ride, a good 22 miles following a 6 mile morning wake-up ride.

In the white car after the 22-miler, Charlie started being ultra-OCD about a crumb and where we'd placed our elbows and then, for three minutes, was super-upset, to the point that Jim pulled over the car and turned it off.

The ride home was quiet and we decided to take the Byrds' off Charlie's iPad. Something about that 60s surfer music (the Beach Boys too) seems to get Charlie in a bad way.

He remained in the same frowning mood the rest of the day, through two more bike rides, a fast trip for a few amusement park rides ('you come every Friday, don't you?' asked one teenage worker; we noted we actually come quite a bit more), a swift-paced night-time walk.

I'm pretty nervous about how Charlie will fare at camp. The staff were very friendly and said they've seen their share of the sorts of the sorts of behaviors Charlie in distress can have. But there's not a lot of staff -- nowhere near as many people as at Charlie's school -- and I'm back to thinking, best to try the "short but successful" route and just have him there for a few hours on Monday and then increase that by a bit if he does all right. 

I've made Charlie a simple hand-drawn calendar noting how many days till school starts after Labor Day, when he has camp (provided we get through the whole week there), when my parents are coming. It's not as many days as sometimes in the past but still plenty. Charlie has set the calendar on the living floor near where he leaves his shoes, a place of honor and  the better to consult it and count the days till September 6 before which, we'll be at work prepping him for the return to school.

There's always some transition or other, isn't there? And being in that 'inbetween' stop -- it's like standing on two tectonic plates and sending maybe there's an earthquake brewing, or maybe just a resettling of order.

 

Medical Procedures & Sensory Sensitivity Training

After the Big Day of the Blood Draw, Wednesday was a back to normal day: Bus, school, bike, food, iPad, bed.

You'll notice I only typed 'bike' once, in contrast to last week's bike/bike/bike/run and triathlon days. All of this was done during days of record-high heat.

I've been thinking that rabid exercise and activity and minimal sleep (those 5am wake-ups) are Charlie's response to a heat wave. Most people are inclined to do the opposite, to reduce physical activity and take it easy. Charlie clearly was doing anything but that -- he responds to the weather the way the weather is -- and this week, with some cooler ('high 80s/low 90s = cool after last week), he's slowed down, finally weary.

Charlie seems to be internalizing the need to wake up for his 7.35/7.45 am bus (it seems to come at precisely at either time), so he woke up on his own on Wednesday and got dressed in his swimsuit to swim at the school pool. He ran onto the bus but yesterday, like Monday, he was not his usual self at all. In the pool, he was vexed and then smiling; he plodded through his academic programs, didn't want his morning snack and got very upset after lunch.

My first thought on reading his teacher's note was that Charlie was still, again, recovering from last week and, more immediately, from the Big Blood Draw Day. He also must know that he's down to the last two weeks of summer school and, therefore, his last weeks with the teacher he's had since he started at the Big Autism Center in November of 2009.

She's wonderful. I'm so going to miss reading her notes. It's time for Charlie to move onto another classroom.

And generally before any big change (my parents visiting, me going to Greece), Charlie starts getting upset two weeks in advance. So he's right on time.

Once off the bus on Wednesday, Charlie took his time snacking and then, of course, it was bike ride time. He didn't ask for a second one and, after dinner, was highly content just being at home listening to his iPad. Noticeably, he didn't play the Byrds -- who'd been on pretty much every single moment for at least the past two or three weeks -- at all. (Though I can still hear the bit about 'bootheels wandering' in my head.)

I'm feeling that we've gotten past a sort of milestone or obstacle or whatever after the blood draw. It's been on my mind to do it for the past several months. Charlie takes Abilify for anxiety and some bipolar symptoms and the neurologist has said it's necessary to check how Charlie's liver is functioning. So it behooved us to figure out how to get Charlie to have his blood drawn without seven clueless (there, I said it!) people holding him down.

At the Ride For Autism in June, I found myself standing at the starting point of the race and talking to the director of AutismNJ. I don't know how I mentioned about Charlie needing a blood draw, but it came up. She insisted that, with the right technician and practice, Charlie could do it fine (she's seen Charlie at a previous school). She also told me she had a presentation about teaching autistic children to undergo medical procedures and sent it to us the next week.

The main parts of the teaching procedure were (1) a desensitization program and (2) a hat.

I'll start with (2) which we ended up not using with Charlie. The presentation had a photo of a child with a baseball cap placed on his head at just the right angle so he couldn't see what was going on while his blood was drawn. We practiced the hat a bit but Charlie didn't need it (and he's not a hat guy).

Two weeks ago, I shared the presentation with Charlie's teacher and she and the aides set up a little desensitization program. They tied a rubber tourniquet (from the school nurse) on his arm, dabbed him with alcohol, gently pricked him with a paper clip. It was a very minimal program but it clearly did the trick, based on Charlie sitting and having five vials collected.

The desensitization program (1) was successful for Charlie because it really helped him know beforehoand what he would feel during the blood draw: All those different textures (rubber, cool/wet alcohol, prick from a safety pin-as-needle). Charlie -- hate to say this -- does seem to have either a high tolerance for pain (years of SIBs...), or a very delayed reaction to it. The needle prick was not really the worst of it for him, but all those other weird parts of the procedure. Practicing got him used to the tourniquet etc.. The last step was that he had to hold out his arm straight and still; he flinched and retracted it twice on Tuesday but put it back after Jim and I coaxed him very minimally and Jim gently kept Charlie's arm still.

After the lab tech pulled out the needle I felt like cueing the violins. We must have tried at least a half-dozen times to go to LabCorp with Charlie, always with bad results (and no blood drawn) and last year's experience getting his blood drawn at a local hospital was just ugly. A major accomplishment of the summer has been completed.

No wonder our household is worn out.

 

How we spent a very cold Saturday

At our appointment two weeks ago, the neurologist increased the dosage of one of Charlie's medications just a bit. Previous attempts to change his meds by a small (and I mean small) amount have often been followed by neurological storms so difficult and worrisome that we've been on the phone with the neurologist within days and have put Charlie back on his former dosage. 

It's been just over two weeks since this latest med change. We've stuck with it and, while there have been some difficult moments (as at the grocery store on Wednesday), we've been thinking that the small med change is having some positive effects, including clearly articulated, longish and novel phrases ('turn on Internet') and Charlie attempting some new things on his own, like shoveling snow. And, Charlie has been quite amenable to waiting to do what he'd like.

On Saturday, we drove down to the beach without bikes for the first time in a long time, as it was just too cold (around 18 to 21 degrees Fahrenheit). Charlie had gotten up early, put on his swimsuit, and loaded the boogie board in the back of the car---'Well, his coat will keep the top part of him warm,' Jim had said. 'Coat' now means, of course, the yellow jackets, both of which Jim put into the back of the white car, along with his and Charlie's super heavy bike gloves. I added some hats and my St. Paul parka and off we went.

At the beach, Charlie said 'I want' several times. 'Ocean?' Jim asked; 'yes,' said Charlie. We drove to a part of the beach that is a bit more protected from the wind. Charlie got out of the car and said 'no' about changing to long pants. Then he got back into the car and said 'yes' about the pants, and reached back for the blue beach bag where he'd stowed a pair of brown pants. He took his time changing (boy with long legs + the back seat of our medium-sized car = not a lot of room to maneuver). Once done, he got out, donned his yellow jacket and gloves, said 'yes' to me pulling the hat onto his head, and ran to the beach.

Jim took the lead and we walked over the packed sand. Some horseshell crab shells were strewn by the water, along with pieces of plastic bottles and the colorful bits of a summer banner depicting hummingbird. Charlie walked briskly and earnestly for some 20 minutes before stopping, looking at us, and saying 'white car.' 

On the way home, we stopped for some Mexican fast-food take-out. Charlie rested only briefly in his room after we were home and then was super-easy-going and content to wait an hour. He stood and watched the numbers count down on the Giant Timer app on his iPad and, when I noted that there were '25 more minutes' or '15 more,' he echoed me with a grin.

Later, he and I went out. We're now officially avoiding the local (and so friendly) grocery store where something was thrown by Charlie. I needed to get a few things and thought of going to a different store which does not have those particular throwable items and mentioned to Charlie that we might go there. 'Yes,' said Charlie.

So we went and, after a barreling run through part of the parking lot with some yowling (a way to release pre-store anxiety?), we went in. I needed some apples and had Charlie help me count out twelve. Then he walked over to the sushi section where, in all the years we have visited this store, he has insisted on getting sushi, even after he no longer liked to eat the sushi from this store. Yesterday evening, after scanning the shelves, Charlie looked at me and 'sushi.' I said 'ok' and then Charlie looked back at the shelf, looked at me again, said 'no sushi,' and walked on. As we passed the produce section where he used always to have to get a package of watermelon, he said 'no' when I asked if he wanted some.

We bought our groceries and went back to the car and I thought: First time in a long time Charlie has gone to the store and not had to get something he wanted for himself. And, probably the first time Charlie has not had his OCD-ness operating on him such that he HAD to get the sushi even though he did not want it---he was able to say on the spot, no, he didn't want it.

Good little, great little, gains. Maybe from the med change; swell to behold.