We Go With Him

Another Reason I Am Not Happy About Global Warming

It was over 90 degrees Fahrenheit here today and Jim and I were determined to get Charlie not to wear his sweatshirt for the sake of, well, not over-heating.

After several no's, forlorn looks at the sweatshirt in a heap on the floor, and general distress, we suggested foregoing the nylon skullcaps that he and Jim wear under their helmets.

Still tears and a look of 'this doesn't feel right!' after Charlie donned his helmet. We shook ourselves: How hard change is for Charlie, a boy of penchant tendencies. We praised him for 'just wearing your helmet!'

The teariness subsided once they started biking, a bit of a breeze blowing on them.

(Getting Charlie not to wear his sweatshirt has become a seasonal undertaking. I would prefer that global warming subside -- April is still sweatshirt armor time, in his book and therefore in ours.)

Goodnight, Irene, What Hath You Wrought?

 

It was almost 80 degrees on Monday -- and not yet spring.

As Charlie and I stood in the front yard awaiting Jim, I chatted with our next door neighbor. She declared that the weather has been strange since Hurricane Irene and I think she's onto something.

Charlie is still wearing his long pants and sweatshirts, not yet ready to shed those winters. Perhaps that was why he was so unsettled -- frowning, making sounds of distress and worry -- as the evening wore on and after a walk and his habitual bike ride. I could put out shorts for him but it is only mid-March, just past those fateful Ides.

 

Coughcah

 

(The title is a random-ish reference to a writer I'm very fond of.)

As we have the Cold That Won't Go Away, we have all been coughing. Usually this is a problem as the sound of coughing is irksome to Charlie's sensitive hearing and, in the past, many I time I have run to the basement, or even the backyard, rather than have a very distressed Charlie.

This round of illness, he has been putting his hands to his hears and wincing a bit, but that is it.

Because he's simply handling loud noises that grate on his nerves and nervous system better? Maybe because he has been coughing plenty himself? ('You're coughy!' I said to him the other day. 'Cough-y' said Charlie).

Sometimes when he sees that I'm about to cough, he has been putting his hands over his ears in anticipation. And when I was driving Charlie around on Wednesday afternoon and felt a coughing fit coming on, I was relieved that I had stowed a water bottle in the passenger door pocket. 

 

Fable of the Staples

 

So we whisked Charlie into the white car soon as he got off the bus and went, in the pouring rain, to the pediatricia, to have the staples removed. The nurse practitioner had her head lamp ready and the staple remover the hospital had given us. She felt the back of Charlie's head over and over and said, puzzled, 'I can't find any staples.'

Whereupon, Charlie found himself sitting in a chair with three adults inspecting the back of his head and giving him an extensive cranial massage. The nurse found the cut and noted it was healing very nicely. But no staples.

'That's the first time I've ever had this happen,' she said to me after Charlie (who had said a fast good-bye) and Jim had departed. I said I'd do a careful inspection of Charlie's room in case he had somehow gotten them out himself.

We went to get some groceries and Charlie helped to bag some things and carried them out, with a smile. But he was stricken at home when we looked at his food schedule and saw that Monday was a groceries day, not a burrito one.

He moped and I went into the kitchen and heated up some fish sticks (which Charlie has refused for years) and some French fries. Charlie came in and munched on apples while everything was in the oven. Without any ado, he ate small bites of fish sticks, potatoes, more fruit, got himself something to drink.

Then we went on a walk in a misty rain and across our field which resembled more a mottled, semi-frozen pond of snow, slush and dead grass amid which, Charlie found the one plastic bottle to step on (it made an extremely loud crunch). Once home, he went eagerly up to his room and settled down, cozy and content, with his iPad and blue blanket, and grinned me good night.

I'll let you know if I find the staples.

 

Lag Is Us

 

For better or for worse, this post is again about lag. (Right, maybe I should rename this blog "Autism Lag" temporarily.) Charlie had incident #3 of the week (so he's now had incidents three straight days in a row). This one happened at 11am and he was back to being calm in just around a half-hour, as his teacher relayed to me over the phone.

Charlie's teacher highlighted one thing in particular: The room had been very noisy and one of the other students does some screaming. I noted to Charlie's teacher that, in a previous class, another student had done a lot of (really high-pitched) screaming, and how Charlie (who of course does plenty of his own things) had endured it for the most part, and had some trouble too. It occurred to me to ask if Charlie is the youngest in his current class and, sure enough he is -- plus he is the only new student in the classroom this year.

Bingo.

Charlie had been with his old teacher and aides and behaviorist and some students for about two years prior to transitioning to his current, secondary level classroom. He was one of the older kids in that class. Now he's the youngest and the newest, plus there are 3 more students in the class (for a total of 9), and sometimes they combine with another class for activities. While I think it's good for Charlie to handle being in larger numbers, I can see how it must be a new challenge. Charlie's teacher said they're working on having him ask for a walk to get out of the room when it gets too noisy, the very strategy teachers have taught him in the past -- but those were other teachers, in other classrooms, when Charlie was himself at a different stage of his development and he needs to learn that same old skill again, it seems.

We tend to be pro-active about and things we know will set off behavior storms. I'm going at least to ask his teacher if there might be some way to remove Charlie from a noisy room and gradually build up to him asking.

But the bigger issue may simply be that, having been in his new classroom for almost two months, Charlie is starting to miss his old one, his old teacher and the aides and the kids. It's not unusual for it to take quite a while (over a month) for him to have a reaction to a new setting -- yes, lag again.

Our own house is quite quiet. Charlie enjoyed a bike ride after a hiatus of all of one day. Then Jim went to Jersey City to speak at an event at an Italian restaurant and Charlie knelt on the big black couch, looking out the front window for Jim to return in the black car -- that is, Charlie waited inside, sitting (kneeling) down, instead of standing for hours on the sidewalk. Certainly this had to be at least a little more comfortable (for his mom, at least, glad to sit at her desk rather than on the concrete porch steps, anticipating the next mosquito bite).

A Good Shave

 

Saturday morning, Jim took Charlie to the barbershop (it's 5 minutes from our house) not for a haircut but a shave. At an (actual) haircut a few months back, Jim had had the barber give Charlie little 'cleaning-up' in the mustache/beard area; he had afterwards concluded, the best way to get Charlie a close shave is regular visits in the barber chair.

Shaving is one of those topics I have never wanted to confront. Aside from having no idea how to go about it, the thought of having to put any sort of blade near Charlie's face was simply terrifying. Your son having to shave is a sort of parents' Rubicon, a sign that the little boy is no more.

The physical changes of adolescence have plagued Charlie since he was about 11: Growing, body and facial hair, hormone, acne, and all that. He does not receive any sex education in the sense of learning about the male and female anatomy; it's up in the air what he would absorb from such a presentation. He is learning about safety, security, strangers. We've talked about him 'growing up' and there being lots of 'changes' and tried to be beyond sympathetic, Jim and I having both found adolescence a particularly unpleasant and unhappy time. [16:00, 18 Sept 11: I edited this paragraph a bit to clarify things upon reading the comments below.]

Jim has regularly been using an electric shaver on Charlie's face. Using a real razor and shaving cream is down the line but no one is looking forward to Charlie getting a cut. The electric shaver only gets so close and the barber option seems viable (and it has an added bonus: the more times Charlie does something, the more used to it he is). The barbershop has been very welcoming of Charlie since the youngest, newest barber, Mike, starting cutting Charlie's hair when he was 8 years old. Usually Charlie gets his hair cut by Antonio, a retired school custodian, but he wasn't in the shop yesterday morning and Charlie accommodated readily to someone else shaving him.

Certainly he must feel more comfortable, in a sensory way, with a nice shave. Looks aren't everything, of course, but what can I say -- minus the shadowy mustache and beard, Charlie looks not only less, ah, scruffy, but his actual age (instead of 17 or older, as he's often mistaken for).

After the shave, Charlie had a smiley Saturday. There was a massive tag sale going on in the NJ horse country town near where he and Jim ride on the trail and Charlie wanted only to do five miles. He got in his ride miles at home and was mostly in an easy-going mood all day (minus a few minutes of intense rocking in the car.)

Yes, Charlie and Jim are poised to become quite the regulars at the barbershop.

Hurricane Irene and Charlie

Hurricane Irene came and went, leaving a submerged car in the center of our town, a few blocks from our house.

A flooded-out car under the overpass that's even closer to our house.

A river runs through the middle of our town. There's some lovely houses built right on it on the 'fancier' north side. We live literally 'across the tracks' -- the north side houses are on the side of town with the better schools, 'tis said. But as Charlie was in special ed when we moved here in February 2003, it didn't matter which 'side' we lived on.

I would say, we chose to live on the right side, as this is what the north side looked like post-Irene passing through. (Yeh, 'dead end,' no kidding.)

 

Charlie slept through the furious wind and rain that came when the hurricane hit. On waking Sunday morning, he called to go out to New Jersey horse country and it took several minutes to absorb that we couldn't. He and Jim proceeded to go on a bike ride after I waded through several inches of water to the shed in the back yard where we keep the bikes.

They couldn't do their usual route due to several fallen trees, piles of debris and branches and flooding. Charlie was troubled by the change in the landscape and in his routine -- he always does look out the windows to check where we are as we drive, so seeing the post-hurricane wreckage must have shaken him. He wanted to get in the white car once back so off we went, only to find that just getting out of our town was a maze. We were very lucky not to have -- like thousands of other people -- lost our electricity. but other parts of our town had and the signals were out, so traffic moved slowly and roads everywhere were blocked by downed trees and flooding, as indicated by yellow police tape.

Charlie endured the stops and starts after some very tense moments. It was disorienting enough for Jim and me to find roads blocked and to have to make numerous turnarounds and back-ups. Charlie is often irked just when we have to make a u-turn or go back home to get something forgotten so the many abrupt halts and turns we had to made must have rattled him to the core.

Once back home, Charlie went straight to bed and slept for almost three hours. I'd say his system was so undone by seeing the post-Irene mess, not to mention so many familiar spots (McDonalds! the supermarket, gas stations, pharmacies) all closed and dark, that he just conked out.

Jim and are also thinking, the big behavior storm he had on Friday was directly related to Charlie feeling Irene a-coming. A hurricane that leads to New York's subway system being shut down and 370,000 people evacuated has got to have an earth-shattering effect on a sensitive-to-everything boy.

Despite that nap, and after a second bike ride (on which Jim scouted out more of which streets were cleared and which closed), Charlie still was sound asleep by 11pm, to the sound of ocean waves on his iPad.

Summer's Not Quite Over Yet

Just two more weeks remain before Charlie returns full-time to the classroom. So far -- I know, knock on all available wood -- this has been a quite good summer and not only because it's not as deathly hot as it was last summer. There have been behavior storm moments, rather too often in the car while on the road and, well, some property damage. There have been some pleasant moments passed quietly at home and some generally pleasant days. Charlie had a first, successful!!!! camp experience.

He's been showing flexibility in small ways that make a big difference: Thinking we're going to get ice cream, realizing we're not, being ok with it. Calling for amusement park rides, seeing the gate closed due to rain, being okay with it.

Saturday morning we went to a memorial for the daughter of a very good friend of Jim's. She died last September and to say she is missed is more than an understatement. She was a teacher and had just started teaching special education students in Louisiana, where her husband was stationed. Charlie met her briefly years ago, at a party after she had graduated.

The memorial was in a local park. Charlie walked with Jim there and he and I hovered at the edge while Jim went to talk. We would have loved for Charlie to stay for the whole ceremony and release a balloon for Kelly, but Charlie was edgy and it seemed best for me to go with him back to the car. There, he called constantly for Jim so I decided to drive the car and we waited in a no-parking zone, with a good view of the ceremony; indeed, we saw all the balloons go up into the air.

I was really glad Charlie was able to go just for a little of the ceremony. Jim and I had both worried that the disruption to his usual morning routine -- Saturdays typically mean driving out somewhere to ride bikes first thing -- would irk him, not to mention Charlie picking up on the sadness and feelings at the memorial. He was eager to get out to Jersey horse country to ride bikes afterwards then resistant to doing more than a 'standard' ride (10 miles). Plus, he got the hiccups early in the ride and, it being a very lovely, sunny day, the trail was crowded with walkers and riders.

Charlie was very worn out once home and fell asleep for almost two hours in the afternoon. I was thinking, he was also recovering from a very full Friday of camp plus a new direction on the bike trail. He wanted to go for rides in the amusement park on waking then assented, and really got into, a 12 mile ride on the new bike path Jim's found in our town (on the recommendation of his friend).

We offered him the choice of going to the rinky-dink local amusement park or the church carnival with the super-fast slide.

Of Swings and Amusement Parks and Things

Life should always have carnival rides in it.

For sensory input, of course.

For dad-and-son togetherness, sailing in rising circles up into the tree.

For a summer day's treat after a good school boy's good day and two bike rides.

And, because the days are counting down to August 30, when the little local rinky dink amusement park closes: It's a short season.

Much as it's always fun to go to the park and see Charlie's big smile as he rides the Frog Hopper, Swings and the Ferris Wheel (well, the days he's fretful and has been calling for the Frog Hopper every foot of the 20 minute trip to the park, the "fun" is tinged with anxiety) -- going to the rides comes with a little dose of sadness. I don't mind that Charlie is often three times the size of the much younger children on the rides he likes, the kids his age having moved onto bigger, glitzier thrills at the likes of Six Flags and such. But I'm wistful wondering: Will there always be things he'll enjoy this much? Can you do the Swings at six, sixteen and sixty and still feel the thrill?

I suspect Charlie will. He certainly doesn't worry about what's 'age-appropriate' and he reminds us that such notions are relative. One thing that has changed is that he's not as crazed and fixated on rides as when he was younger and we'd drag him, screaming and flailing and desperate to stay on the ferris wheel. Now he knows that rides, while fun, are not forever. You start by 'giving the man the ticket.' You end by getting back in the white car.

Once he always had to ride the merry-go-round. Now he walks right by it, which is as well: Charlie is become so tall he'd have to tuck his legs up high, feet in the stirrups; just a few years ago we worried about him falling off his horse.

Carpe diem -- ride those rides while you can.

On the other hand,

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.