We Go With Him

When Disney Is a Warning Sign

To the unschooled, the progress that someone (this would be Charlie, who had a good school day on Monday though he was very tired) has made to leave 5 pieces of sushi and a packet of soy sauce is most likely not apparent. Those 'in the know' know that the above 'still life with 5 sushi' is a sign that said boy was able to overcome the OCD urge to finish the whole pack and eat only as much as necessary.

He also showed how far he has come, though in ways that may be troubling to many. Last night we could tell his uneasiness-o-meter was on the rise. He came back from a walk and said 'bedtime,' started listening to one Disney album in particular with songs from Pocahantas and Hunchback of Notre Dame -- songs meant to spark emotion in a certain Disney way that is a bit forced -- and running around maniacally. We could hear his feet pounding on the floorboards above our heads.

Charlie came down and smiled a bit and then hung around the kitchen, still listening to those songs (it's not a good sign to hear the one from Beauty and the Beast in which Gaston wants the head of the Beast) as I did some things in the kitchen. I could tell he wanted a walk but it was dark and images of us running after him streaking off towards cars, trees and lawns were in my mind. Jim and I praised him for doing good, assured him we'd stick together.

Charlie announced he wanted 'bedtime' and went upstairs, soon calling me to type on his iPad (with a different phrase, 'Gingerbread Boy') then said 'Mommy stairs.' I gave him more assurances and a little extra melatonin, went downstairs and we heard the getting-familiar sound of the iPad being hammered on the wall.

There was a great deal of plaster and dust on his bed and Charlie not looking pleased. I took the iPad and placed it on the floor and Jim sat in the chair and talked soothingly and Charlie stayed on his bed (without his led shaking -- that's a sign he's in heavy neurological storm mode). He got through it and got off the bed, saying 'sheet bed' and headed for the bathroom.

The toilet never flushed but I think it's likely there is a thymic issue -- his stomach was just a bit distended -- and this morning, the day after, the air is heavier and the light isn't shining so brightly. Charlie was very glad to lie down on a clean sheet and clean pillows and fell asleep after some more talking with Jim, and the sound of the ocean on his iPad.

He was very groggy getting up this morning but did soon as the schoolbus pulled up.

We've looked into fixing the wall. I have a feeling Charlie will bang out far more of it (preferably with the iPad -- why he's sitll using his old one) and since the whole wall has to be redone, well, it's a mess but things in our universe are far worse. It's just a wall (ok, walls, as there are holes in several walls of this house, which is incredibly sturdy). Messily, imperfectly, it's about progress as perfection.

 

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.

Jersey City Variation, with Friends

Charlie just woke up at what is a bit of an early hour and is eating a snack / quite early breakfast.

Unusual but Saturday was too. After a morning local ride, we went into Jersey City where Jim and Charlie met friends as they came out of the Holland Tunnel and then biked through the park and Jersey City and Charlie, used to driving off to get Vietnamese food, handled eating it in the car as we picnicked with our friends and their two kids.

It stressed him to do it but he did it. He cried some in the evening, rubbing his eyes with his fists, something to remark upon as i realized he rarely if ever does that. He got through it and slept till, I guess, hunger called at 3am.

And then he was an extremely excellent boy and went up to his room till 6.30am when he came down to ask for a walk (instead of asking to do to so at 3.30am and showing his displeasure when told he had to wait). I don't believe Charlie slept though.

 

3 Staples Out of 5

Almost every seat was taken in the pediatricians' waiting room. Charlie wanted to stand anyways and he therefore appeared even more as a giant redwood amid tiny toddlers on parents' knees and wobbly babies in arms. The one teenage boy was listening to his iPod and trying to appear as if he weren't there.

For some reason, only I was sitting on the low mini-bench for the preschool set so Charlie was quite looking down on me as he said variations on 'Rocco Portia!', the names of an uncle and his dog.

After we finally were ushered into an exam room, Jim noted that he had seen Charlie pullout a staple just before we went to the doctor. The nurse discovered that it was actually 2 that were gone and, with Charlie sitting at one end of the exam table, she handily pulled out the remaining 3 (whereas, last January, Charlie pulled all 3 out himself).

Then it was home for a bike ride with the Beatles playing.

The Cruelest Month

Pace TS Eliot, August is the cruelest month in our household.

Charlie has a week and a half more of summer school and then 7 days of camp run by the ARC, which he may or may not be able to handle (he did well last year and the camp is friendly and low-key but there aren't as many staff as there are at his school, partially because so many would-be-staffers are college students who have to go back to college and since Jim and I teach at colleges, can't complain about that).

The weeks afterwards until school begins following Labor Day are always tough. It's hot and humid with thunderstorms (and irksome changes in the air pressure), there's lots of unscheduled time, and everyone else is either on vacation and going on a trip or wishing they could. 

Yes, the words 'oh it's so great he's off from school' can grate a bit!

I recognize I'm whining. Plenty of kids have no summer school, or a few weeks of half-day summer school and no camp -- Charlie's summer school lasts for 6 weeks and his days are just a half-hour less than during the regular school year. But this is the time of year when I start thinking, year-round school would be the best for Charlie. Fewer disruptions and of course there would be breaks and vacations. It's the long summer holidays that he and we could do without. I'm anticipating his end of summer school anxiety to start next week, if it has not already.

The end of August is usually a bit of a scramble as Jim and I are both supposed to start teaching then but Charlie is off. It does all usually work out, if a bit messily (you have to be creative, let's just say), and everyone breaths a collective sigh of relief when it's the day after Labor Day and back to school.

August used to be the month we routinely spent two weeks at the beach. It was glorious and fun when Charlie was little but the last two years much less so, especially as Charlie, after a few swims and bike rides and a walk by the ocean, seemed to really want to be back in our house which, while not close to the beach, is just a few hours' drive away.

Things are manageable! But I guess we're always looking out for improvements.

After his post-3am going to sleep on Thursday, Charlie got up for the 7.35am bus, slept most of the morning, had a great afternoon including a great speech session, a happy bike ride, an early dinner, a good (non-napping) rest and then wanted a walk at 8pm. However, a severe 'derecho' thunderstorm had started pouring down rain with accompanying lightning and thunder so walking was out of the question. Charlie made several requests then waited, good as gold, in his brown chair. He fell asleep there and got up to go to bed around 10.30pm, slept till 4am, and we all did the yearned-for walk at 6am when the air, even in the summer at the end of July, is cool.

Long Night Together

Despite a double dose of melatonin, Charlie stood in his room making various noises as 2am approached.

The humidex is supposed to go up on Thursday and bring thunderstorms, a change in the barometric pressure, all that good stuff. Not to mention the five staples in the back of Charlie's head.

After a happy school day and afternoon, Charlie communicated his rising unease by wanting a third walk (two is generally enough; in the photo above, he is just about to ask me for walk #2) and his more dogged need to run sprints. He came back, went to his room and, after he had watched some old favorites (the Goodnight Moon video and some Wiggles)l we heard the thuds that mean he was banging the corner of his iPad on the wall.

He calmed and was quiet then got up at midnight. After a good hour of the standing and noise making, he went to lie down after which I have been hearing a distinctly non-lullabying combination of Arcade Fire, the Pogues, Wags the Dog doing the tango he called Wango it rhymes with mango.

I guess even teenageboy-ness can occasionally override melatonin.

I've been following the euro zone crisis for Care2 blogging so living (being for the most part awake) 24/7 has its so-to-speak advantages. Am reading now what's going in the markets in Europe (six hours ahead) and in Asia (even more hours ahead) rather than getting to wake up to the latest round of gloomy economic news.

Yes, there is always a bright side to burning the midnight (and the 1am, 2am, 3am...) oil with Charlie.

A Lesson in Parenting

 

Charlie wasn't feeling his best when he got to school on Tuesday. He had woken at 5am, we had walked, he had fallen asleep in the brown chair and woken up just as the bus arrived so he wasn't really awake when he boarded. And what with the 5 staples and all the to-do on Monday, he had to have lag.

At APE -- it had had happened the previous week -- he tried to pull down a post holding up a volleyball net. Got very upset, calmed, ran and hit his head on a column in his school.

His teacher called and I thought of him pulling down all of our bookshelves in spring break of 2011 and, more recently, hitting his head on tree trunks.

The goal of the afternoon was working towards and, hopefully!, maintaining the peaceful easy-feeling. Charlie was eager for a bike ride and had a great time with Jim, singing and talking as they rode. We went to get a few groceries at the one store Charlie can handle. We came home on a happy note and then -- this has a way of happening -- he got distressed.

We'd been quiet and avoiding talking about anything stressful. I was trying to set up a new modem for Jim and was getting the 'not detecting any wireless device' message and kept trying and then sternly told myself, hearing a little cry from Charlie, stop. He can sense when we're more obsessive about anything, technology and computers especially -- he most notice the difference in our focus, body posture, inattentiveness to him, OCD-strained energy.

After a bit, he came downstairs, turned on the Arcade Fire 'Suburbs' album and wanted a walk. He was not peaceful-easy. I was in favor of waiting, Jim thought we could go.

We all went. For years, I've been avoiding talking too much around him when he's upset, as anything I say seems to be astimulus for him getting irked and annoyed - maybe it's just the sound of my voice! I tried, in a moderated way (with a reminder from Jim) to offer simple affirmative enthusiastic praise to Charlie, the sort Jim is good at delivering in a non-forced sounding way. (It's not a science but an art.)  A third of the way into the walk, I could see Charlie's shoulders no longer tensing and, while making growly sounds and running, he was not on the road to agitation. Charlie was indeed a lot more at ease when we got home as rain was starting to fall. 

It was a good lesson for how we can change what we do for the better for Charlie. Certainly we have asked him to change so much over the years.

 

Veterans of the ER We Are

Life is good because we're the tight team o' three, together, stick with us! As Jim has taught Charlie to say.

Jim and I agreed on this via text. We wanted to be quiet as Charlie had dozed off and there are plenty of other noises in the pediatrics ER. Intercom (I had given him that as the day's new vocabulary word), phones ringing, nurses rushing to and from, beeps of machines and kids wailing.

Charlie is very stalwart. He had had his agitation out. After lunch, he had been sitting at a table at school when he swiped things off and hit the back of his head on a wall so he had a large cut right where he got three staples in January. I couldn't really talk much to his teacher for details and suspect a combination of thymic distress, riding humidity, and negotiating feelings about his grandparents' visits (a growing up boy feels differently and complicatedly).

He needed five staples. He napped after being examined and having a numbing cream applied; we has to wait as someone had been in a car accident and the ER was busy. (But it is good to know your case is not the hardest.) The doctor was young, cheery, Indian, with a serious young Middle Eastern student physician accompanying her. They cleaned the cut by shooting water through a tube which was probably the most annoying part as the water dripped from behind down via Charlie's right temple, Charlie let out a whimpering moan, I hurried to catch it with a towel and the student physician hurried to get another one. The doctor worked fast, Jim held Charlie's arm, a 'child specialist' chattily showed him a balloon game on the iPad (great app but not going to get it as it now has associations). The student physician gave Charlie a quiet pat on the back as he and the doctor went out.

When Charlie had the three staples in January, two orderlies were summoned to help him lie still. Not needed this time.

We went home for a bike ride, burrito and a walk and made sure Charlie knew what a great boy he is. He was asleep by 9.30pm.

 

Jersey Boy Smile

I didn't realize what a great smile Charlie had in this photo taken Sunday afternoon at Liberrty State Park till I looked over my pictures in the evening. He and Jim had a really good ride, going further than they have before into Greenville (a part of Jersey City).

Actually, Charlie's look above sums up the weekend. Sadness hung over it. But he was at his peaceful easy-feeling-est.

I got him a new Arcade Fire album, too. I think he was trying to ask for it.

 

My Beautiful Aunt, Ave Atque Vale

Saturday it was Aunt Karen's funeral in Sacramento. I so wanted to be there, I feel very wrenched in my stomach thinking about it. But Charlie having had incidents involving a trunk (of the automotive sort) twice due to anticipating my 40-hour trip to California in June, I couldn't.

Charlie maybe has a cold from the latest round of crazy weather (roasting hot 104 degree humidex one day, then breezy 70s -- like being at the ocean), and/or from a recent excess of emotional angst. He woke 3.30am and then was ultra good, cheerily acceding to me setting the timer twice for two hour segments. We all went on a walk at 7.30, then I went running while he breakfasted, then he got a fabulous haircut and shave, then he slowly did 16 miles on the bike path. He moved quite slowly, indeed, the rest of the day, on a home 6-miler and a walk in which he stood and stared at things and made gestures and noises while I thought about Sacramento. Despite a long afternoon nap, Charlie went to bed at 9.45 pm and to sleep.

My sister kindly offered to read something for me at Aunt Karen's service. Here it is.

---

My sister Jennifer, who’s reading this, and I were born in the late 1960s, when Aunt Karen was going to Cal Berkeley. She was an English major, confuting stereotypic assumptions that all Asian Americans of earlier eras were engineers and science majors. I’ve always loved books and reading and studied literature too when I went to university.

Aunt Karen often gave us books. One of the first was a worn forest-green copy of Beatrix Potter’s The Tale of Squirrel Nutkin from a mysterious place called Portobello Road. My mom told us that this was a big market in London where old things were sold. Later “Portobello Road” became familiar to me because Jennifer had a record with the Bedknobs and Broomsticks soundtrack and the “Portobello Road” song -- “street where the riches of ages are sold” -- was one of my favorites. Thanks to Aunt Karen, I had one of those riches, from a country far away.

When I was in second grade and had the chicken pox for two weeks, Aunt Karen visited and gave me a stuffed white kitten and two Mrs. Piggle-Wiggle books. Anotehr time, she gave us The Juniper Tree and Higglety Pigglety Pop! There Must Be More to Life by Maurice Sendak. She shared her copies of two piano books, one with the songs for Sendak’s Really Rosie and the Nutshell Kids and another with music and lyrics from all sorts of Lerner and Lowe musicals, from Gigi to Camelot.

No surprise that some of Aunt Karen’s gifts to Charlie were all about books and stories, a pale blue and pink blanket with Peter Rabbit embroidery and a set of plastic dishes painted with Winnie the Pooh (the Milne drawings, not the Disney ones). The plate and bowl are long gone but Charlie still uses the cup when he brushes his teeth and the blanket is safely tucked away in my bedroom.

These gifts -- and the silk scarf in dark blues and gold and red flowers, and a soft grey wool scarf -- were, to me, emblematic of Aunt Karen. She was kind and caring, there is no doubt. The things she gave us were thoughtfully chosen, with us specifically in mind: Aunt Karen noticed the finest of details. She might not tell you that, but this attentiveness came through in her gestures and actions; in, for instance, the plates of Christmas cookies she, and Alissa and Maeley, made and gave every December. My favorites were her Russian teacakes, petite and with just enough powdered sugar and melting in your mouth, and her thumbprint cookies, with a perfect smidgeon of jam in the center.

I noted this artful precision and grace in Aunt Karen’s writing when she and I exchanged some emails in recent years. I could hear her voice so clearly in her writing and have saved the emails for careful rereading. Due to Charlie’s struggles with being away from our home in New Jersey as he became a teenager, my husband Jim and I have not been able to visit California for the holidays. I’ve deeply missed the chance to see and talk to Aunt Karen and everyone in Sacramento. Happily, I was able to attend Alissa and Uri’s beautiful wedding in June and see Aunt Karen with that delighted, just-tickled-pink smile and to feel her familiar, gentle presence.

It was the smile she cheered me with when she brought me that stuffed kitten when I was little. It was a smile she never lost, through good times and sad times. Having been through some things myself in raising Charlie (he is on the moderate to severe end of the autism spectrum), I have always been inspired by, and sought to emulate, Aunt Karen’s resilience, her quiet strength and her grace in adversity.

In recent years, I have been thinking ahead to when Charlie might be able to travel again, and how it would be good to sit down with Aunt Karen and tell her how much that frayed copy of Squirrel Nutkin meant to me and to thank her for bringing literature, a taste of a world beyond, beauty and grace into my life. I’m grateful to Alissa and Maeley and Art to be able to tell you about what Aunt Karen has meant to me and to Jennifer for reading it.

We love you, Aunt Karen. We will miss you dearly and deeply. You and your buoyant, joyous smile, will be always be in our memories and close to our hearts.

love, Kristina

[click on the photos to enlarge]

Digging around in Lake Tahoe (looks like I'm on the hunt for something in that water).

Must have been Jennifer's 2nd or 3rd birthday!

Taken in Sacramento ca. 1967 at the house on Q Street (that's Jennifer; I wasn't around yet).

Aunt Karen (with that smile -- she just looks so delighted) and her family at my cousin Alissa's June wedding.