We Go With Him

Blue Car, Blue Sky, Blue Ocean: With Mike

 

It is World's AIDS Day and I am thinking of our dear friend Mike and lots of happy times at the beach houses where he used to drive up in his 1964 blue Chrysler Newport (before he had to let it go because he couldn't afford to keep it up; Jim would drive to get him). Mike gave Jim this bike.

 

Autumnal Splendor

A super autumn weekend with 37 miles of bike ride, lots of sunshine, sleep (! -- I know), and, best of all, a visit from old friends from Minnesota. Here's Charlie and his long-time friend Blake in Liberty State Park (that's them above, too).

Charlie is already asleep at 9pm after sleeping in till 11am so I wouldn't be surprised if he wakes at midnight or some such. I am quite used to it, at this point.

He's been listening to worldbeat lullabies from a CD we used to play all the time when he was a baby.

Heard memories (like melodies) are sweet and those unheard, and remembered, are very good too.

 

Talking With Charlie!

Charlie and I had a 20 minute conversation last night!

This is what he said. N.B.: All the words describe things and people from his past and as I reflected on what he said, it occurred to me that a lot of his speech now is not requests ('mands' in VB speak) but comments about things he's thinking about and having feelings about. It's great that he can talk about things from the past (like toys he no longer has) and not get upset.

In some cases, I have written his slightly inarticulate pronunciation. I was once called on this by a self-advocate for 'othering' Charlie's speech, in the way that people once wrote out 'black' dialect. So I'd like to say, my purpose here (which may backfire) is to give a bit of a sense of what Charlie's speech sounds like. Jim and I can understand or figure out most of what he says but his words are not always so clear to others.

'Rocco Portia. Portia Dog, Rocco Dog. Uncle Rocco, Uncle Portia! Portia is a dog. Aunt Rocco, Aunt Portia!' (Rocco is Jim's brother-in-law and Portia is, yes, their dog not, as Charlie likes to joke, an uncle or aunt.)

'Farm Families. We hah' dee Farm Families, we no had' dee Farm Families.' (This is more inarticulate because it's a phrase from when Charlie was about 7.)

'Alphabert. Alphabert Barney!'

'Tara hah dog named Woo!' (A full sentence! The dog is 'Lou.')

'Gong Gong Po Po Rocco!' (A new one. My dad and Rocco are both kind of darker-skinned -- may sound weird to mention that, but I suspect that is the sort of thing Charlie notices about people.)

'Miss Cheeka!' (Charlie's last teacher when he went to school in our town just as I started blogging in June of 2005; I looked her up and she still teaches in our district. I must send her a note; she was really, really great and we were in high-advocacy mode when we pulled Charlie out of her classroom. I'm glad to know she's still in our town in the special ed program.)

'Claudette Versha!' (ABA therapists in St. Louis. So I mentioned several more for Charlie to name.) 'Peggy, Elizabeth, Christie, Alissa, Allison, Shiri. Kelly!'

'Tara, Lindsay, Beth, Arielah, Andrea, Kristy, Stella!' (From St. Paul.)

'Kristen Sara!' (From when we first lived in New Jersey after leaving the Midwest. On his own, Charlie added:) 'Anne Marie. Mike!'

I told him he has a great memory, which is obviously true.

A great way to cap off a 43-mile weekend, the last ride of which was cut a bit short when a thunderstorm sent down sheets of rain.

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.