We Go With Him

Domestic Cheer

 

It rained all Tuesday afternoon but was surely cosy and cheering in our kitchen, where Charlie enjoyed watching my mother cook shrimp in tomato-y sauce and nibbled on roasted cauliflower my dad handed him.

 

Better

This photo was taken on Thanksgiving. By the end of Monday, Charlie had that bright smile, though it was bike ride-less day. 

He was not smiling at all on Monday morning, when he took for-ever to get out the door for the bus as he was again wrapped up in lining up his feet and looking at them and making throaty vocalizations. But he did board the bus (somberly), made it through the school day, enjoyed an after school car ride with me (it involved a stop to the Golden Arches -- a little comfort food), a rest, a walk in the soggy, muddy, leafy field. Jim had stayed late at work and after the travails of Sunday, Charlie was ok with a bike hiatus.

By day's end -- even a bit before -- he was smiling as seen in the photo above, running around the house, grinning intermittently. He still lined up my parents' suitcases in a neat line like oversized toy train cars and there were throaty noises and stomping. Sometimes you just have to have one of those days to get on to the next thing.

Some Days It's Just Too Much

In the above photo, Charlie is smiling on returning from a 15-mile bike ride with Jim on Sunday afternoon. It was probably one of the few moments he smiled all day and it was kind of amazing to see him smile like that as he had cried for most of the entire ride after having a massive behavior storm in the car on the way to the bike trail.

He had woken early, only to spend most of the morning in 'heavy stim mode,' standing in certain places of the house with his feet exactly lined up, vocalizing, staring. We've seen Charlie have periods of doing such from time to time, often when there's a lot going on around him and certainly there has been that of late, with the Thanksgiving holidays, time off from school, my parents and sister and boyfriend visiting, more warm November weather, a stop at his late grandparents' house on Sunday morning.

Jim and I had the feeling that Charlie was agitated from the time he woke up, so maybe we should have stayed home. The car is one of the worst places to have raging storminess.

The 15 mile bike ride on the trail (with no honking cars but some horses) was a thorough workout and certainly must have given Charlie, even though he was still tremendously upset with lag, a feeling of accomplishment.

It's hard, but these days we try not to castigate and second-guess ourselves and past post about whether we should have done this or that. I mean, we do to the extent that we try to reflect on what happened and plan for such not to happen again. But sometimes storms just happen; Charlie has them at school and, as his teacher notes, it can be very hard to tell what out of many variables set things off for him. The focus is about helping Charlielie calm as quickly as possible and move on to some other activity to better direct his energies.

Exhausted from everything, Charlie had a very early dinner and went straight to bed and slept for the rest of Sunday.

Packing Up My Library

 

I spent the latter part of Saturday afternoon finally, finally, finally, packing up all my books that have been in stacks on the living room floor for months, after some spring break behavior storms when Charlie was taken by some urge and pulled every single one down. For the most part, the books have just sat on the floor and gotten very dusty.

Saturday, we had gone to Liberty State Park and Jim had taken Charlie around the park and the Statue of Liberty and onto some Jersey city streets (i.e., the ride was a bit urban at some points, in total contrast to riding in Jersey horse country). They had a second ride at home, too, and then Charlie went around the house lining up everyone's shoes and my parents' suitcases and seemed gleefully happy. He ran into the basement and we heard something that was not exactly a crash.

Jim went downstairs and returned with a quite old computer that Charlie had once used to look at photos on. He was never able to operate the mouse so sometimes things got very frustrating and the computer is in a battered state. Just the sight of it can bother Charlie. My dad pointed out that we could send it back to the manufacturer to recycle and we placed the computer temporarily in the old black car, just to get it out of the house.

Charlie was standing awkwardly in the living room, his shoulders and back full of pent-up energy. I saw him looking at the books, thought of how he has thrown the books during previous fits of agitation, and announced that I was going to pack them up.

I sorted through the books, setting aside certain ones into certain boxes. My dad got Charlie to help him push them across the floor to a corner and Charlie went from troubled to smiling, having to exert himself physically and knowing he was helping. After an hour, all the books were put away and Jim took some boxes down to the basement, and Charlie was at ease. He ate dinner and went up to his room, calling me to help him find some things on his iPad.

It was a few hours before he went to sleep but when he did, he had the iPad tucked close beside him on his bed.

 

No Ideas But In Suitcases

Friday morning, Charlie brought my parents' three suitcases down the stairs, one by one. He looked at me in a certain expectant way and after I (not entirely sure about what he wanted to do) said 'ok,' he went outside and carefully put all three suitcases into the back of the white car. Then he and I went on a walk.

After my sister and her boyfriend came over from the hotel where they're staying, we went out to New Jersey horse country for a bike ride. Afterwards, we took Charlie out for one of his favorites, a burrito; he was happy about that, as the place we go had been closed on Thanksgiving and he had wanted one. At home, he paced around amid everyone and looked in the fridge only to quickly shut it and ask for a walk.

Off he and I went but Charlie didn't cross the street at his usual point and then started walking in a totally different direction towards A Certain Place -- the local grocery store where we still are not taking him. We walked a ways and I texted Jim and then I suggested to Charlie that we head back home -- and he turned around and did. Jim was standing in the yard when we got back and he and Charlie were soon on their bikes.

I went to the refrigerator. Charlie's usual habit it to look and poke around in the fridge. When I opened the door myself, I realized why he wasn't: It was jam-packed with Thanksgiving leftovers and his own preferred items -- watermelon, sushi -- tucked in here and there. I rearranged everything so things were more streamlined and so most of the middle shelf only contained things for him.

Charlie came back form the bike ride and went upstairs for awhile and then came down, looked in the fridge, asked to go to a different local grocery store where he's done all right. We went, he helped himself to a couple packs of sushi, we looked around, we got in line with a clerk I recognized from visits with Charlie years ago, we bought our groceries. I can't quite remember what led to this comment from the clerk (who I'm sure recognized Charlie, having seen a much smaller boy a number of times years ago many a time): 'He's leading you, right?'

Oh yes.

Charlie brought the groceries in and set them on the kitchen counter and, with my mom and sister looking on, ate three packs of sushi. He wanted another walk; as my sister and boyfriend were about to leave to catch an early plane Saturday, my parents wanted to take photos and Charlie posed for a couple, with a big smile. Then he said cheery good-byes and went to the white car and brought in my parents' suitcases, one by one, and, one by one, carried each back upstairs.

Then we went for a walk, though Charlie hesitated a little about crossing the street at the usual spot, but was visibly less tense in the shoulders when we did.

 

Holiday Endurance

Holiday anxiety manifested itself in Charlie at the end of a day of handling the day - guests (= new voices, new presence in the house); things closed (including most McDonalds).

Coming home after a 15 mile bike ride, Charlie had asked for a hamburger, and held himself together after we walked up to two dark Golden Arches. Happily, the third was open (and had a long line as a result).

My sister and her boyfriend are visiting and Charlie seems glad to have more people around. It does mean he has more to adjust to.

After dinner -- Charlie watched the preparations and didn't touch any of the food -- Charlie brought my parents' suitcases downstairs and laid them at precise angles on the floor. Then he went back upstairs and, after hearing him crying, I found him standing completely soaked by the shower, wearing his swim suit and on his way to being very distressed. I suspected that, after a long day of things being out of whack, he was letting it all out. Last time my sister had visited was last Christmas and we had gone to the beach to ride bikes: Was Charlie thinking of that?

What's a holiday without strong memories?

I handed him a towel and got him to change and Jim came up stairs and gently suggested that Charlie, who was calling for a walk, rest a little first. Exercise is often a good way for Charlie to work off anxiety (we had already gone on three walk-runs earlier in the day). But Charlie was standing with a slightly quaking leg and a look of dull worry on his face and we realized it was best for him to get calm inside the house.

Charlie came downstairs, stood for some minutes. Then he said 'bedtime' which sometimes means just that, and sometimes means he just wants to go to his room. Yesternight it meant both: After some quiet minutes, we heard him turn on his iPad (he's got a new album by The Who) and then, somewhat later, I found that he had fallen asleep, still dressed, meaning that he was very worn out indeed after navigating so well through the holiday.

Just glad we can expect all the McDonalds to be open from here on until Christmas.

 

A Marathon It Is

 

My thoughts of writing a proper Thanksgiving post went a bit by the wayside after Charlie and I did our third walk of Wednesday evening at a remarkable speed. He had walked and only ran some during the first two walks and also had a good neighborhood bike ride with Jim right after he got off the bus and we called out Happy Thanksgivings to the bus drive and bus aide.

I'm not saying that everything Charlie does well needs to be turned towards some specific skill, but he really is a natural when it comes to running.

I'm just grateful I started running when I was just around his age, some 28 years ago. I can't keep up -- obviously, Charlie's legs and therefore stride are significantly longer and bigger than mine -- I'm no real marathon runner but I have a bit of stamina, thanks to years of daily running. I've long liked to start the day with a run to 'get my head in order.'

And let's face it, what better metaphor is there for the Autismland experience than running the race of your life; than running a marathon?

Tuesday Before Thanksgiving

 

Up with a smile, waiting for the bus with Jim and my parents.

Smiling on arrival at school then so upset for an hour that he missed the weekly swim session.

Home to an afternoon and evening of soggy, soaking, solid rain, rain, rain. Charlie wanted a bike ride.

I came home, we did the first of two walks through puddles and a muddy, leafy field.

The rain was coming down so steadily that on the second walk our pants, shielded by raincoats, got soaked.

Charlie watched with a smile as my sister and her boyfriend appeared for dinner.

He went up to bed, taking my dad's gray sweater and a soft black fleece vest.

After he was asleep, I went to charge Charlie's iPad but it still had 100% charge as he'd not really used it all throughout the day.

 

After Worry

Despite being tired and weary on a Monday when, the majority of the leaves being off the trees and brown instead of yellow or orange or red, you know it is the later part of autumn, Charlie got up on his own for the 7.35am bus; went through the day with extra anxiety noted; came home and snacked and waited for Jim to get back; rode bikes in the dusk with reflective vests and bike lights blinking and with some rain, but nothing like the downpours they've been through; ate dinner and moved various things (a black fleece vest, Jim's shoes with socks tucked neatly in them) around to his systematic liking; went, very pleasedly, to bed.

And fell so soundly asleep at 8.30pm that he slept through Jim leaving to get my parents at the airport, my parents arriving, us talking.

Once again, having that much anxiety takes a lot of energy.

(On the part of the parents too.)

 

Action and Reaction

We had much more of an adventure than we usually have been attempting on Sunday. We had made plans to meet a friend from Philadelphia in a river town on the Delaware after Charlie and Jim had done a 16 mile bike ride on a lovely bike path, last visited in September.

Charlie was a bit on the grim side as we drove on not the usual route, and for far longer than we do for our usual Jersey horse country rides. He started smiling on the last stretch of the ride and was very eager to get on his bike and go on a lovely sunny, and warm for November, day.

After the ride, we had a nice, if noisy, walk on the bridge over the Delaware that separates New Jersey from Pennsylvania and then, after getting some sandwiches (though not for Charlie, as he does not eat sandwiches -- aftereffect of years on the gluten-free casein-free diet) and walking back to the car. Charlie sat in the car by his preference as we talked, getting out to shake hands with our friend and say bye.

He started crying not exactly out of the blue as we drove home. We counted multiple anxiety-inducing factors: impending holidays, impending visit of my parents,  emotions after seeing our friend and after going to a place he'd been to years ago, stomach pain, being hungry (the little river towns had lots of nice places to eat but not the sort of places that are to Charlie's liking and it wasn't the moment to try to get him to eat something he's not used to), encountering about 20 motorcycles all revving their engines at once.

He stopped crying gradually, but he remained distressed. The sight of a McDonalds that we've gone to before and that was on our side of the road was a huge relief to all.

We got home fine, Charlie seemed to want to nap, couldn't, came downstairs, looked in the refrigerator, looked at us, got extremely upset -- it is indeed the season for holiday anxiety. We'd been anticipating a behavioral storm: Just having such a great day, having so many experiences can occasion a big response in Charlie.

After he was soundly asleep, it started raining, a change in the weather that Charlie must have also been sensing and discomforted by.

It was definitely still a very good day. In the past, I think we would have seen Charlie getting so upset as cancelling out the earlier part of the day, but we've come to see him doing so well and so much, and then having the storminess, as of a piece; as action and reaction that we toughed through together.

And yes, we intend to back to the bike path, and the river towns.