We Go With Him

Autism and McDonalds

Clearly exercise is a big part of life for Charlie aka "Mr. 24 Miles on a Friday" (he and Jim are readying to go on long local bike ride #2 in the photo above -- an evening ride, so they are suited up with neon vests and (not that can you see them) mini bike lights). Physical activity (daily, aerobic) has been key to help Charlie with the regulation (to the extent he can) of behavior storms and even played a role in helping his speech and focusing (if not his sleep, though after the 24 miles Friday, he didn't ask for a walk and went to sleep at a decent, before midnight hour).

A good diet, with as few processed foods as possible in the diet of a teenage American boy, is also important. I wrote about such, with some references to the worrisome (anxiety-provoking) question of life post-school for Charlie here at Care2.com in a post about Jamie Oliver's Food Revolution (apparently May 19 has been declared 'Food Revolution Day') (I got a bit on my high horse in the post, I confess).

Writing the post got me to thinking about McDonalds.

About how it is kind of unavoidable for most America kids to go there; I myself used to love a cheeseburger, which Jim thinks is laugh-off-the-couch hilarious because I've been a vegetarian since I was 13 and I used to go around in circles explaining to his mother what I would not eat,

About how, while Charlie was on the gluten-free casein-free diet (which he still kind of is as we have found dairy in particular to be really bad for him, plus he is such a creature of habit that he just doesn't eat lot of gluten-y foods because they were off limits when he was little), McDonalds' bun-less burgers and fries were a readily available treat.

About how it's not so easy to find things he likes, let alone things to treat him with.

About how parents with kids like him just want to indulge a kid with so many challenges because the world is just so very challenging and pleasures often few and restricted. Charlie certainly likes eating so getting him things he likes to eat has long been a way to, yes, treat him, though he has often become highly obsessive about his favored foods.

About how McDonalds, ever so reliable and offering the same menu at every one of the dozens of locations across the US we've patroned over the years, has sometimes seemed just made for Charlie's obsessive need for order. And et me tell you, as a parent, who hasn't felt a massive sense of undying gratitude on seeing those familiar golden arches after a wretchedly long time in the car with a woebegone child?

About how often, as a parent, I've wished there weren't so d****d many McDonalds everywhere and they wanted to recognizable with those d****d golden arches.

Since he was able to talk (a little), saying 'I yeh uh-uh' for 'I want fries' when he was 4 years old, McDonalds has been something Charlie, with his limited repertoire of words, could ask for and, hence, we had to take him there when he did ask.

But lately, Charlie really has not been asking as much to go. He always eats more once home after eating McDonalds; sometimes he has asked for the McDonalds and barely eaten any, as he if were only asking to go for the sake of asking to go, but the food wasn't what he wanted. Leading us to think, Charlie is discovering fast food isn't fulfilling, or filling, and he can forego it. He might even be figuring out that he doesn't feel so good after eating a McDonalds meal.

Which is all pretty revolutionary. I think.

 

The 30-Something Day

 

A first on Saturday: Jim and Charlie did all 16 miles of the Jersey horse country bike path. They are at the start in the photo above.

Then, after an excruciating wait for the green blanket on his bed to be washed and dried, Charlie called for a long ride at home, so they ended up biking about 30 miles.

He had woken around 6am and waited till I roused myself for a walk that was actually a walk, without any mad dash running.

Usually Charlie requests a second 'nightcap' walk to finish off the day, but those 30-something miles must have been sufficient because Saturday night -- both surprisingly and not so surprisingly -- he did not. 

 

The Riddle of the Sphinx, Charlie-style

Who swims in the morning at school,

rides bikes in the afternoon,

 

and runs in the evening?

Yes, it's Charlie.

(Who, despite his full share of exercise, is quite wide awake at 1am tonight and bursting with energy.)

 

Easy Come, Easy Go

Sunday involved three bikes rides sandwiched between an 8am walk and another at 8pm. It was warm in the middle of the day and there's supposed to be more of the same (mid-60s Fahrenheit) till midweek. We've still been putting out shorts for Charlie to wear, to school, too, and will until it finally just stays cold. After the past few years of working clothing transitions with Charlie, it just seems easiest on everyone to have one transition, rather than any back and forth.

(Besides, there always seem to be some boys who wear shorts year-round.)

The day, and the whole weekend, were pleasantly sunny and blue-skied, and uneventful, i.e., no 'behavioral fireworks.' There was the moments when Charlie got out of the car and charged, loudly, across the parking lot, evoking consternated head-turning from other people. Once I would have been defiant ('he's autistic') or worried about Charlie being 'inappropriate.' Now we've learned, Charlie will be Charlie. After the fast dash, he walked quietly into the store.

It's a point that was reinforced on our morning walk. We had passed a man with a dog on a leash and pushing a stroller. He was very engrossed in talking about the different sounds animal makes and asking the child to respond. After repeated queries about 'what does a horse say,' I heard a little voice from the stroller say 'no.'

Sometimes letting it go is the way to go.

Marathon Day (in a literal sense)

 

I'm fond of the saying that life raising a child like Charlie is not a sprint but a marathon.

Then on Saturday, Charlie did 28 miles in 3 bike rides with Jim and 3 walk-runs with me.

He also proved his mettle when, just after we got to Liberty State Park in Jersey City, we discovered something askew in the mechanism of Jim's bike (it's really the bike Charlie got for his birthday, but he prefers Jim riding it). Charlie had been all set to ride off past the Statue of Liberty and got off his bike and stood and watched while his parents fiddled with a wrench and the bike chain. We were able to fix the bike enough so Jim could ride it and they did a fine 8 miles.

Afterwards came the walks, including a 5-miler which takes us through the less scenic areas of New Jersey.

It's the family marathon. -- definitely best when the family team takes part. 

De-revving the Nighttime Motor

The change of seasons seems to have (1) wreaked some havoc into Charlie's sleep (he has been really struggling to get to sleep at night before midnight lately) and (2) instilled a need for furious exercise in him, especially in the form of madcap-fast runs down the street, me running as fast and steady as I can, and grateful I took up cross-country running in high school and have been running for exercise ever since.

Charlie also yowl-moans while tearing down the sidewalk. Many dogs have been barking in response.

Friday, he and Jim were out on a 12 mile ride on the local bike trail (cleared of debris post-Hurricane Irene) when I got home from work. After dinner and a really brief rest, Charlie was asking for a 'walk' and off we went -- and then, within seconds of stepping back inside, he asked for a bike ride. This was possible thanks to reflective vests and bike lights and the night was crisp and cool.

As on the previous several nights, Charlie was unable to settle down in his room. The clock was nearing 10 pm and I could hear him running back and forth in the upstairs hallway. I had a feeling he might ask for another walk but it was clearly late. And, recalling something I had read in a parenting magazine years ago -- before Charlie was diagnosed, possibly -- about getting kids to bed, I have been thinking, exercising right before bedtime is not automatically tiring or conducive to going to sleep. Indeed, it can rev a child up; there have been nights when, after a late walk, Charlie has been as energetic as ever. Time to start thinking about ways to soothe, relax, instill the peaceful-easy.

Charlie was listening to the same two or three Kinks and Beatles songs over and over and I knew he wouldn't want me interfering with his iPad. I started summoning positive energy about settling down for the evening rather than a crazy-fast run down the street. Charlie, after struggling to sleep before midnight this past week and aerobic exercise some hours before bedtime, was sitting on his bed watching a video. I flipped the switch to turn the hallway light off and went quietly downstairs. 

He called once, for a little snack, and then was stretched out with his big blue blanket and, around 11pm, asleep.

I think I'm building an argument for why we need to do away with changing back and forth between 'regular time' (coming soon later this month) and 'day lights saving time.' Enough changes already.

New Adventures

 

My general contention is that every day with Charlie is a new adventure. Goes without saying, from the moment we wake up (on weekends, after he wakes up -- Charlie only ever seems to want to sleep in on weekdays), the unexpected (for worse, for better) is liable to happen.

Sunday had one actual new adventure for sure. We went out to Jersey horse country and Jim and Charlie headed straight for the bike trail. But Hurricane Irene and the sister storms in her wake have taken a heavy toll on the trail, with parts of it altogether washed away and much of it become mud, puddles and muck. Consequently, Charlie and Jim decided to take the road back, with Jim saying (as he told me) to Charlie: 'How about a new adventure?' On the smooth blacktop, Charlie led the way and went so fast Jim at times lost sight of him.

This ride was interleaved amid three walks, short ones/runs at 7am and 9pm and one more bike ride in the afternoon following a 5-mile long walk of the sort we have, over the past two years, done plenty of. Charlie had been sticking to a regimen of short super-fast sprint-walks but Sunday afternoon, at the crucial moment when left means home and right means 4 more miles, he went right.

Charlie has previously had manic periods of exercise. Yesterday he wasn't feeling his best, having a definite bout of sniffles which always seems to set his whole system (including his stomach) askew. He had a long bout of crying in distress in the late afternoon (after the long walk and 2nd bike ride) then went to lie down in his room, with the music playing on his iPad. When he came down the stairs he was peaceful, and eager for an ice cream and lemonade run (the store was out of lemonade and he was okay with it).

Charlie is back to listening to the Beatles again and his old, old favorite, jazz violinist Don Sugarcane Harris -- certainly a very fine backdrop to a hard day's adventuring.

 

Summer Training With Our Own Personal Trainer

It occurred to both Jim and me yesterday that Charlie has been about the same height -- a few inches shorter than Jim -- for a bit, after a long period of seemingly growing at a regular and rapid pace. Maybe Charlie is on track to have height commensurate with Jim rather than Yao Ming.

While of course we'd like for Charlie to grow as tall as genes + nutrition allow. On the other hand, the prospect of him not being mega-tall is potentially a relief. Charlie's knees bump up against the front seats of the white car and he has literally no room to stretch out in the back. He doesn't seem to mind (most of the time) but then, he's not inclined to imagine what it would be like to be in a more spacious vehicle. The old black car that spends most of its days parked in front of our house -- it runs quite well but, lacking four-wheel drive, it's not safe to drive in winter snow and ice -- is due to be replaced and Jim and I have been considering roomier options, better suited to our boy (if not to his mother who, being not quite 5 feet tall, would prefer something like a VW bug -- but don't even think of Charlie riding in that).

We do spend a hefty percentage of time in our car. Rides don't have quite the soothing effect they did on Charlie when he was a baby and toddler; he's always alert now, looking out the window, sometimes saying 'this way, that way'; I wonder often what's going through his head as we pass certain places.Sometimes car rides are over-stimulating. Occasionally Charlie insists on going to places that feel a bit like the stations of the cross for us, as they're sites where he's had some spectacular tough moments. 

To some degree, Charlie calls for rides because he wants to 'make the neighborhood rounds' and see that all is as it should be. Plus, it's accurate to say that Jim likes driving; being a New York taxi driver (back in the 1970s) was something of a natural job for him.

Jim also has a deep affinity for driving around New Jersey and hence doesn't mind driving several miles out to New Jersey horse country several times a week of late. A friend introduced us to the trail a few years ago but I am quite sure she and her family aren't as regular visitors as we've become: We went out Sunday morning for the third straight day in a row.

Basketball At Night

Jim decided to take the basketball on an evening walk Charlie called for on Sunday as we go through a school yard with a basketball hoop. Last night I actually didn't know who had the ball -- if Charlie had the ball -- until I looked at these photos, after fixing them up with an Instagram filter. Looks like Jim and Charlie were indeed engaging in a little back and forth with the ball.

The walk was a nice ending to not a bad, but a rather more frenetic weekend than we've been having, due to Charlie's furore (I've been seeing that word a lot in the Guardian and couldn't resist using it with that extra 'e,' which makes it look more Latin-like) at the ocean being placid, peaceful and near-waveless on Saturday.

Sunday Charlie was still working through the disappointment. He'd woke at 1.30 on Saturday and stayed up till 3 or 4 am listening to music (and staying in bed, which made hearing the blare of the Replacements at those hours sort of tolerable). Charlie slept until 9am and then was really out of sorts; standing in the front yard while we got out the bikes from the backyard shed, he zoomed, yelling, down the street, stopped, threw his iPad and gave a woman and her small white dog a good startle.

I followed and Charlie hurried back home, wailing. The iPad turned out to be fine (Otterbox saves the day again) but we kept the iPad off -- in 'time-out,' I said -- and Charlie sat in the cool house in the black chair and went from fuming and stricken to weepy and wanting his iPad back on.

A lot of bike-riding, on the tree-shaded path in Jersey horse country and at home, helped settle him, as did rides at the little local amusement park (how we'll miss it when it closes at the end of August). The night walk was Charlie's call and I wasn't sure he'd want to stop to throw the basketball -- Charlie does these walks with a steam-ahead pace  -- but he didn't seem to mind and shaking up the routine is always good in and of itself.

Jim had Charlie pass the ball to him and did a little lay-up and made a basket. Two points for the home team, right?

How To Have a Triathlon Day

At 5am Charlie got up and told us: 'Yes. Yes. Yes.'

I had a feeling he didn't mean a repeat of Saturday, rides in Jersey horse country and all over our neighborhood and all.

Charlie wanted to see the ocean.

So we drove down at 8.45 am in less than 90 minutes and encountered a beach at low tide.

We all swam.

Low tide doesn't mean little waves -- the ones yesterday curled over and smacked down fast. Perfect for Charlie to get in some good foamy boogie-board rides and champion body-surfing.

Then we went home and Jim and Charlie did their daily round of bike rides. 

 

It being a weekend, Charlie's internal sense of the order of things called again for rides.

Jim enjoyed a good swing, too.

With the walk-runs Charlie and I did at 5.30 am and 7.30pm on top of the swimming and biking, Sunday indeed qualified as a family triathlon day.