Changing Gears
Ebbs and Flows

Things Unsaid and Said

Charlie swinging at his school carnival The weather here on the East Coast continued to be hot and muggy, the air so heavy that dust particles seemed to be hanging in it. I don't like to go on and on about the weather but it's something we always have to consider regarding Charlie as he likes to be outside and as it's very hard for him to change his habits to suit the changes around him (such as going sans winters). His difficulties in communicating internal discomfort and something like the sensation of 'I feel sweaty and hot' also have always to be factored in.

 We do think that his not being able to express 'my stomach hurts/doesn't feel right' as a possible reason behind Charlie getting upset when he got off the bus to go the library with his class Friday morning. He likes to go to the library and enjoys the bus ride. Maybe he felt a little queasy after being on a (as his teacher noted afer school) not too-well air-conditioned bus, and then stepping into the humid air? 

He was happy the rest of the day at school and cheerful when Jim and I picked him up. Later in the afternoon, Charlie and I went on a 'modified long walk.' There were some moments when Charlie voiced (wordlessly) his displeasure but he worked it through himself and was smiling as he and I ran up the sidewalk to our house. He made a run for the refrigerator and, after asking white car' and 'ice cream' and hearing my affirmative answer to both, settled himself in said car with said cold item. 

Charlie has lately been routinely asking for a bike ride following his afternoon walk and Jim noted, 'Maybe he's learning how tadapt to things'---like hotter weather and a need to decrease one's physical activity.

Charlie and Jim beside the inflatables at the school carnival  

It was as well that Charlie wanted to get in the car as we had planned to attend a carnival organized by his school. Charlie got right out of the car and followed Jim's lead. We went past the booths with games and the line for balloon sculptures and wandered around a field full of huge inflatable slides and bouncy jump things and the like. Charlie looked at the slide (I looked at another child who was doing just what Charlie liked to do on such big slides---stop and sit in the middle) and walked on, and on, and over to a playground area. He got on a swing and was very content to sway back and forth (switching swings once for one that was higher off the ground; those long legs get in the way). He asked for 'push' but somehow pushing on his back didn't feel right and Jim and I instead pushed on the rubbery seat or (in Jim's case) pulled him back on the chains.

After about 15 minutes of that, Charlie got up and started walking towards the car and we followed. Once home he called for his bike helmet and, after Jim retrieved the bikes, off they went. 

One thing Charlie's not being adaptable about is the speed at which he pedals his bike: It was as hot as ever when he and Jim went out and Charlie rode his bike as fast as ever. Not unsurprisingly, he 'overheated' and manifested his distress vocally at the end of the ride. He didn't want any lemonade when he ran inside th house, instead---once his shoes were off---telling us 'bedtime.' I helped Charlie carry up his blankets and took the clothes (yes, um, quite 'dampish') that he handed me and stepped out of the room as Charlie told me 'Mom stairs.'  

A few minutes later we heard him laughing; ten minutes later, I heard him saying 'lemonade, lemonade.' I brought up a glass and Charlie was all grins as he quaffed it and said a word he'd been saying a lot with teasing delight;


I played my part of the joke by noting that it wasn't raining but maybe it would soon (and that maybe this was why the air felt so heavy and it was so very warm). Charlie handed the cup back to me and pulled his old, much used (and much loved) yellow blanket over his shoulder and said, with the same pleased grin, 

'Good night!'

Words that he knows the meaning of well, and knows how to use.

Charlie off for a bike ride on a sultry evening


Andrew DA

So great to read these stories. A long path, but one that is clearly "in beauty". Blessings to you all!


Andrew loves to say and certainly knows the meaning of good night also!

The heat is a killer. Hope you stay cool this weekend.


Can you or Jim "set" the gears on Charlie's bike to a better speed and then wrap something temporary around them to prevent him from messing with them? He might be more comfortable that way instead of having to peddle like mad.
Have you tried him with inline skates? They're fun in the hot weather as well as the old-time standby the Slip 'N Slide. Running through the sprinkler is a nice way to cool off, too. My daughter occasionally forgets her 15-year-old dignity and joins in with the younger cousins when we have a cookout.


I love reading stories like this. The struggles and small triumphs of a routine day! My children don’t have autism but we have friends who are going through the same things everyday!


Charlie knows the definition of colors. Does he use adjective like "cold" or "bright"? Does he understand the mimicry of an upset stomach (all bent over) or other enacted adjectives describing phenomenological events?

Kristina Chew

We were all a bit done in by the heat today as you'll see in about 25 minutes (in the next post)....... will keep in mind the thought about wrapping the gears of Charlie's bike. Had a brief experiment with skating with Charlie: He liked the movement, but needed two people helping him, and a lot of concerns about falling down---had to let that idea go.

I don't know about 'cold' (which he understands in term of temperature) and 'bright' with Charlie, but have a feeling those gradations in describing things might not be apparent to him; acting things out for Charlie could I suspect misfire, as what we think might symbolize stomach pain might signify something else to him.

thank you! just getting through a regular old day does often seem enough a triumph to me---wishing your friends and their children the very best.

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