We Go With Him

Party Success!

I'm sure Charlie threw the books on Saturday night in full-out anxiety about his birthday party on Sunday. It was a reminder of why, for some years, we skipped birthday parties for him, period.

We try to keep everything low-pressure for Charlie, in recognition of the fact that just the idea of the party, let alone the realities of guests and a table loaded with food, can weigh on him. We invited a number of our friends, all of whom have been very aware over the years of Charlie's struggles and sensitivities and would understand when we ducked out of a conversation.. Having my parents around was a huge huge help -- they picked up a big order of Chinese noodles and dim sum and, with four adults, someone always had an ear out for Charlie

He wanted a walk on waking, followed by a 12-mile bike ride. Coming home to a pan of shrimp lo mein and a pan of shrimp chow fun was an obvious treat and, while in the past I would have said 'wait for the guests!,' a birthday boy should get to eat his birthday noodles when he's ready (and hungry).

Our good friend Hal endured non-moving NJ Turnpike traffic on a drive up from Philadelphia. Charlie came running down the stairs when he arrived and ran smiling around the house. Hal had to head back home early but did see Charlie off with Jim and a friend, Ed, on bike ride #2.

Our other friends appeared and we had a nice little crowd on our back deck which is generally underused, Charlie having always preferred the front yard. (I'm probably in the back yard the most these days as I routinely cross it a few times to get the bikes from the yellow shed.)

Charlie spent a little time in his room after the second ride but was wary of so many voices at once (especially if you consider that it's rare for anyone but the three of us to be in our house). He and I went on a walk in the early evening during which we ran into our next-door neighbor and I noted that we were taking 'taking a break from our party'; she laughed in understanding. Then I took a smiling Charlie to get a burrito.

I had been sure to place his lunchboxes in the refrigerator so he would know that, party and all, he had school the next day. Charlie picked up his iPad and paced the L of the kitchen, dining room and living room. At first he had on Disney, then the Kinks ('Shangri-La'), then he started walking more briskly and running in spurts and his face started to get more set (i.e., frozen), and then he turned on the Pogues and his running got more intense and I went to find Jim to confer.

Jim stopped in mid-conversation to say he and Charlie would go on a bike ride.

So they did a total of 36 miles on Sunday, biking their good-byes to our guests -- all of whom we are thanking profusely for helping to make Charlie's 15th birthday a memorable, pretty much peaceful-easy feeling, and very good-feelinged, celebration.

And yes, after 36 miles of bike riding and 2 1/2 of walking, Charlie was ready to climb into bed at 10pm, and soon asleep.

 

Biking With Friends, Take 2

After a 15-miler in Jersey horse country, we spent another afternoon with his old ABA therapist and her husband, who was very glad to join Jim and Charlie for a neighborhood bike ride.

A Happy Saturday Visit With an Old, and Very Special, Friend

 

The highlight of Saturday was the brighter-than-sunlight smile on Charlie's face when he saw, and got a huge from, one of his very first ABA therapists. She and her husband flew out to New York Saturday on some business and kindly took the train to our New Jersey town.

We were actually just returning from a Jersey horse country bike trail bike ride when they got to our train station. Fortunately there's a very nice café (which I have actually drank coffee in on one of those rare occasions) in the center of our town and our friends had lunch there while we got Charlie his usual after-bike burrito and then came home.

This therapist was in her senior year at the university where I was teaching in 1999 when we were first looking for students to do ABA with Charlie. I still remember meeting her when she walked into my windowless office. She was at the first training session we had in our second-floor duplex on Ashland Avenue in St. Paul, when Charlie cried, cried, cried at having these people trying to get him to sit in a plastic purple chair hey what!.

Actually, when our friend had her first turn getting Charlie to come to the table and sit in the chair, he didn't cry.

Later, when he was doing a full (40 hour) schedule of ABA sessions, he often climbed up on a futon couch to look for the therapists; he always knew our friend was there when he sighted her car, a red SUV. He took to all of the young women who were his first ABA therapists but he especially took to her. Charlie was preschool-age then and she'd pick him up in one of the plastic purple chairs and give him a "Jetson" 's ride, or push him around in a laundry basket. She babysat him a couple of times, too, and, after we moved back to St. Louis in May of 2000, she came to visit us. Nine years ago, Jim, Charlie and I went to her wedding and (I think I'm remembering right), walking down the aisle after the ceremony, she actually stopped on seeing Charlie as he gave her a very big smile.

We've stayed in touch over the years via the Internet and, on hearing that she and her husband would be out here on the East Coast for a few days, of course had to get together. Jim and I told Charlie at the most two times that she was going to visit; I'm sure he committed the thought to memory on hearing it the first time.

After meeting her in my old office 12 years ago -- it was a time when all was confusion, when we weren't sure we should be doing ABA, when we were wondering about biomedical remedies, when 'autism' was the scariest of words though it was Charlie's diagnosis -- I remember thinking, things are going to be all right. Many have been the trials and tribulations since then (understatement of the decade, right?): Thanks to Charlie's long, early days of teaching and learning with our friend and his first therapist team, things are still -- are still going to be -- all right.

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.

 

 

Waiting For Lag

I hadn't been sure how Charlie would respond to seeing his friend Blake and Blake's parents and grandmother on Sunday. Charlie has strong reactions to seeing people and on Monday we anticipated some lag. Certainly I found myself having flashbacks to the winter of 1999 in Minnesota, when Charlie was wrapped up in doing 40 hours a week of ABA and we'd met Blake and his parents and were all stumbling around to figure out what to do for our kids.

Charlie was slow to wake up but somehow (magic, if you ask me) Jim got  him to get out of bed, just in time for the bus. His teacher wrote that he was a little upset on getting to school but he was smiling by the end of the day. The rest of Monday unfolded in a very non-controversial way, with a bike ride (in perfect autumnal crisp but not cold weather) and an ice cream run.

I have my running shoes by the door and was waiting for Charlie to stand at the top of the stairs and say 'yes walk.' He did call from the second floor but it was to ask me to turn the internet on for his iPad and then for a snack in his room -- a sign that Charlie had no intentions of a neighborhood constitutional.

It could mean he'll be bursting with energy and wanting multiple of walks and bike rides in the days to come. It could also be that, after a very full weekend including 14 mile bike rides in the wind and up hill and down dale, he's in need of rest and if that's in place of the perturbations of lag -- that would be very good.

 

Biking With Friends

A friend texted me this morning and said she and one of her sons were planning to bike the Jersey horse country trail that Jim and Charlie have become regulars at. (She actually introduced us to the trail some years ago.)

Charlie led the ride the whole way, getting quite far ahead of everyone and knowing, once he reached the halfway point, to stay put and wait for Jim to catch up.

Our friend's son has been into giving hugs. After giving Jim and me one, and shaking our hands, he proceeded to walk over to Charlie, who is not a very huggy person these days (nor has he ever really been one; Charlie was once known to be a master of the 'backwards arm-free' hug, but now sticks to fast-slap-high5's). But yesterday I was just in time to turn and see Charlie with a funny, happy grin on his face as his new biking pal gave him, yes, a big hug.

Jim and Charlie got in two more rides Friday, plus Charlie and I did an evening run: Got to get in our rides before Irene hits and all the better that one of them was with friends.

Happy Birthday to Charlie

Charlie's birthday is not till Sunday but we thought we'd get the festivities started by having a party on Friday afternoon. It was a most low-key affair with only a few (great great) guests (two of whom did some guitar playing), a whole lot of Chinese food (plus my parents found a place that makes good dim sum), and -- but of course -- the blowing-out of the birthday candles which you can watch in the very home-videoesque home video above.

Charlie smiled throughout his party.

A Full Sunday

The day started at 6am: Charlie really never seems to sleep in on weekends of late. He helped himself to some red-sprinkled heart-shaped cookies my mom had sent and kept himself busy with his iPad till we got up.

Then the day really got underway.

We drove out to Jersey horse country with the bikes strapped to the white car. Jim and Charlie did a couple of miles on their favorite road by a river.  While it would warm up into the 40s by the afternoon, it was down in the 20s in the morning, plus we were in the mountains and a few snow flurries fell so a shortist ride was quite invigorating.

At home, Charlie again kept himself busy by shoveling snow while Jim went to the gym. Or that is, Charlie wanted to shovel snow but found that the snow mounds were too hard for him to scoop into with the shovel, so I got out the ice-breaker-hoe-thing (I know, that's a pathetic attempt to name it) and broke up some of the snow. Charlie shoveled (or, 'rearranged') the snow happily.

Jim came home and we picked up our friend Hal at the train station and drove to Jersey City where Charlie watched about two-thirds of a basketball game (we hadn't been to one in almost a year). He had his iPad with him but, due to the noise (or rather, the sensory assault of the piped-in music, some of which sounded like metallic guitar strumming combined with train wheels slowly screeching to a halt), no one could hear it. Charlie did glance at the game at times. He certainly seemed to enjoy being there, crowds and noise and lights and everything be d****d.

Sadly, the Peacocks lost to the Fairfield Stags in overtime (80-79). But what a winner our boy is; he was so content sitting in the bleachers and, afterwards, hanging around our living room while we shared a pizza with Hal and talked: A full Sunday and a very good day.

I think the boy in the photo below knows it, too.

 

Just Another Day, Plus

It was both a usual kind of day for us yesterday and a not so usual day, in the very best of ways.

Despite taking a long and deep nap on Thursday afternoon, Charlie still went to sleep before 1am (a tiny bit of extra Melatonin helped) and woke up groggily. We left a bit late, but not egregiously so. Charlie walked in as soon as an aide appeared and had a good day.

When he got home, Charlie was greeted by me and an old friend, a young woman who starting coming over to spend time with him two summers ago. I had decided not to tell him in advance that she was visiting as doing so seems to set up a huge amount of anxiety in Charlie. 

He handled the visit very nicely, as it turned out. After running off the bus, he gave our friend a fast, steady look and a little (fast) smile. Then he went to do his usual, removing his communication book and then his lunchboxes and plastic containers. When I turned one lunchbox inside out to wipe it out, Charlie picked up the other one and did the same.

Then he asked for a ride. I asked our friend if she needed to head home or might she like to go with us? She said she'd do the latter and so off the three of us went what (as I told her) was a very local, very everyday and mundane ride, past residential neighborhoods, gas stations, and many a big-chain retailer (and fast-food restaurant).

Once home, we said good-byes, Charlie keeping his quick and quiet,

I'd say that's the way he generally prefers to handle transitions. No big hoopla, no elaborate greetings, no effusive displays or expressions of feeling.

Our friend understands this. She definitely has a good understanding of Charlie and his preference for keeping things low-key and quiet. Which is not to say, he doesn't feel sad or wistful or some such. I rather think that, not only does Charlie feel all of these; it takes a bit longer (that lag thing again) for him to realize that he feels them.

He spent some time listening to music (another way to work through what he was feeling?) after our friend left. Jim came home from New York and we all went on a ride to the airport. Taking a pass around terminals A, B, and C seems to be our new winter's way-to-pass-some-time. We looked at the lights and Jim pointed out an airplane in the sky and then we ended up taking a little tour of Newark beneath the PATH train tracks.

Our boy does like to be around transportation. And, in his quiet way, people.

Beach + Bikes + a Friend

We went down to the beach Saturday where, as the previous week, Charlie asked to have the boogie board strapped to his wrist.





He took off his new blue coat (thanks, PoPo!---yes, my mom and dad continue to supply something like 95% of Charlie's clothes) after stepping onto the sand and piled his sweatshirt and shirt on top of it. It was low tide so Charlie got much further down the beach than last week. The water was cold and, after looking at it for a bit, he turned to Jim and asked to have the board taken off, and then, after re-donning his shirt and sweatshirt, headed back to the car.

As we walked down the sand, we walked past two blonde teenage girls, the older of whom said 'hi' and asked if Charlie had gone in the water. The girls' parents own the duplex across the street from the beach house we had rented for some five years and we've nodded hi's regularly. This was the first time we had seen them in the off-season and vice versa, and the older one asked if Charlie had gone in.

'No,' Jim responded, and explained that Charlie likes to have his board and swimsuit as part of a proper beach experience.

Seeing friends at the beach house was always part of that experience and we were joined at the beach by our friend Hal, who, when we rented a house, always came for a weekend stay.





Hal met us at the spot where Jim and Charlie like to start riding their bikes, and Charlie was all smiles and ran around happily as we got the bikes unloaded.

It was much warmer than we had all bargained for and, after Hal and I had driven some 18 miles down, we stood outside and talked. We hadn't seen Hal in quite a while, since a basketball game at my college last March, when Charlie was not (as he now is) almost Hal's height.





After the ride, we ordered some sandwiches and went to get Hal's car. Charlie and I stayed in the car while Jim and Hal picked up the food and Charlie, processing the changes to our usual beach day routine and all the memories of Hal staying with us at the beach over the years, grabbed and snatched my hand and cried out and was on the verge of launching into neurological storm mode.

He rocked heavily while keeping his seat belt on and yowled and screeched and Jim and Hal reappeared and we did have to say some very hasty good-byes. Charlie cried mightily as we drove and slowly calmed and we got
him a hamburger and fries and I emailed Hal the photo I had taken of him and Charlie and Jim and told him that Charlie had gotten over everything fast and well.

Did I say we're oh so very proud of our boy?