We Go With Him

The New No Sleep

 

After the past couple of weeks, it has become quite apparent that Charlie's regular sleeping hours have become 1 or 2am to whenever we rouse him to get on the bus. The old strategies -- lots of exercise (a good 15-mile bike ride with Jim, a fast-paced run-walk with me), melatonin, carefully orchestrated bedtime routine, quiet in the house -- seem not to be working at all. (Not that they have always worked, for that matter.)

Or rather, Charlie being on the cusp of turning 15, he is adopting decided teenager (if not college student) hours. So far, he seems able to get himself out of bed to board his 7.30am bus, regardless of when he falls asleep (and so far, he does always sleep, at some point).

Charlie has been amenable to staying in the house and mostly in his room and using his iPad: This is quite a change from just the two years when he insisted on round the clock walks and became so frustrated at the hours passing as he lay in bed but could not sleep that behavior storms sometimes occurred at odd hours of the night. While it can be a bit taxing on the parental end to be routinely up rather late for a number of nights in a row, expressing that frustration to Charlie never helps and (as we've learned from painful past experiences) often just makes things worse. Better to be peaceful-easy if sleepy.

These days, Charlie indeed wants to be left to his own devices: While I used to sit, alert and tense, listening to him through hours of insomnia, I've now been working on my computer or reading a book and even, since I am certainly not a teenager, getting some sleep.

(With one ear attuned to our boy, of course.)

 

A Little Lag

 

After slogging through several days with his cold, Charlie had a great day at school on Thursday. The temperature was in the 70s and he waited happily on the front lawn for Jim to come home for a bike ride.

He and I went on a walk after dinner whose pleasantness was jarred when I had two bouts of coughing and then he wanted to go to bed. As he was tucking himself in, he started crying and just seemed very sad -- it wasn't crying of the sort suggesting his stomach hurt or some such. Jim came upstairs but Charlie was inconsolable. We said, repeatedly, how we're "all here together." He did stop crying after a few minutes and fell asleep.

Lag after my parents leaving? My coughing on the walk? Sniffles on and off throughout the day, maybe from allergies -- perhaps Charlie is just feeling sick of being sick? Undeterminable teenage feelings?

Something Very Sad

This news story is too sad, and awful. Obviously I cannot stop thinking about it; Jim too.

It's too easy to say 'how could that mother have...'. Her neighbor said she spoke of being tired. So far, even when I'm more tired than I've ever felt I've been, I've been able to keep scrubbing, walking, running (as the case may be), going. So far.

This article, by a mother of two autistic sons (one 19, one in his early 20s) -- it's Charlotte Moore, author of George and Sam -- shows the struggle for her sons once school was over (at age 19 in the UK).

Charlie is closer in age to all of these young men. One point Moore makes especially stands out to me: Our kids' development is not 'normal' -- they are developmentally delayed individuals -- so the thought that they would be able to be all done and ready with their education at the same age as other children is ludicrous. I understand all too well why there are cut-off ages; like Moore, I think that is something that needs to be changed and/or that, we need programs in place for our kids beyond when they become legal adults, but are still far, far from ready to be case into the big wide world.

I didn't think about any of this all Wednesday afternoon, which Charlie and I spent together as Wednesday is Jim's day to work late. He got calmly off the bus, asked to get a burrito (that's become a Wednesday routine) and had his happy-joy-sweet smile for the whole ride. He was still hungry when we got home (Charlie hasn't been eating much lately due to his cold) and then we went on a walk. Lots of people were out enjoying the warm weather, from stroller moms to skateboarders.

Soon as we got home, Charlie announced he was ready for bed and upstairs he went. He was sound asleep before 7pm.

Not every day can or will be so peaceful easy. How one does appreciate the days that are.

 

ὃς μάλα πολλὰ πλάγχθη: We've Got the IEP Down -- Now For the New Frontier, Adulthood

 

I'm sitting here all day, that is, until Charlie's bus pulls up around 3.45pm (I can see it from the window). The two red books contain Homer's Odyssey and were bought and read when I was a sophomore in college. Under them is my Homeric Greek lexicon, purchased while I was in high school from the book store of the University of California at Berkeley.

We all have the same cough 'n' cold. Maybe because this ailment is less taxing (and lethal) than that nasty stomach illness Charlie (and Jim) endure in December, Charlie has still be doing well at school. On Wednesday, waiting for Jim to come home from teaching all day was far less difficult than waiting for Jim to come home from going to Boston and the evening passed with brownie-making and two walks. Charlie fell asleep with Disney blaring on his iPad -- we left it on, as he's woken up when we turned it off before. (He was sleeping with his hands over his ears, as he often does.)

I just got off the phone with New Jersey's Division of Developmental Disabilities. Due to us moving back and forth between towns and counties, 'things got confusing' and we were so focused on his school and home needs that I let the DDD portion of things slip. At Charlie's IEP, Charlie's school case manager fulsomely reminded us that Charlie has no more services from the school district as of the month after his 21st birthday. We will then have to turn to / rely on / make millions of phone calls to the DDD.

I made it my goal this week to get things with the DDD back in order and after a few rounds of voice mail tag and accidentally calling the wrong person, I spoke to 'an actual person' instead of a voice mail message; was told that, three years before Charlie's school services end, is when he'll get assigned a DDD case manager; contacted the Division of Disability Services to get some information (another live person!); started looking up the Division of Vocational Rehabilitation -- the first DDD person told me that, following graduation (yes, it's on the horizon), they will see if Charlie can handle some sort of job with a job coach and if not, we/they will have to find him a day program.

Probably because I have had MUST FIND A JOB FOR CHARLIE BECAUSE HE WILL MISS SCHOOL SO MUCH since the IEP meeting last Friday, a Care2 post about Chinese workers making $8 per iPad became a disability employment post.

The above concern probably also has something to do with the fact that I have memorized the first 10 lines of the Odyssey and have been reciting them to myself and out loud in the car (when I'm driving by myself) regularly.

Charlie's IEP last Friday was indeed productive, honest, informative, concise. Only 5 people -- Jim and me, Charlie's teacher, Charlie's school case manager, the BAC's principal -- were there. We have had many 'exciting' IEP meetings in the past. Just when you've got one thing mastered, time for the big wide world -- the even longer odyssey -- of adulthood.

 

Another Incident In This Odyssey

 

This was the first truly cold weekend of the winter and Jim and I talked about a shorter ride in Jersey horse country. We were driving when Charlie started rocking, his torso moving extremely fast while the Replacements played.

Then he turned on an old Barney album, still with the vigorous swaying.

Then on the highway he grabbed my arm, Jim's arm, Jim's hand, Jim pulled over, Charlie hit his head on the backs of the seats.

I reached back and took the iPad and turned it off and it stayed at my feet as Jim got back in the car and got off the highway and turned the car back east towards home. Charlie cried most of the way and called for his iPad which I only handed back to him after we were home and the Replacements had been deleted.

We thought of the great ride at the ocean on Saturday and how Charlie had persevered through a stressful week. There must be some lag? Maybe he was worried that this would be another week in which Jim would go somewhere, despite all assurances that such would not happen?

Charlie slept some in his chair and then woke and wanted a bike ride, pronto. I was making chicken and rice and heating up some fish sticks and said, how about lunch at home first? Charlie munched apples and tried some chicken and fish sticks -- slowly but surely, he is eating some different foods -- and was ready for a bike ride around 2.30pm.

It was cold and the wind blew, and there were a few snow flurries. It hasn't been made the wintriest of winters, but this Sunday surely felt like it and Charlie, after some dinner, watched me seriously as I cut up a watermelon and then went to bed at 6pm.

We heard him coughing some three hours later and saying 'tickle Mom,' meaning that he wanted me ('tickle' is a vestigial phrase from when he said that word to ask for us to 'come and tickle him'). I found him, eyes closed.

'Plug in,' said Charlie, gesturing a bit towards the wall where the cord to his iPad is. I got the cord and plugged in the iPad (on Charlie's bed) and told him I loved him and good night.

His IEP last Friday was good though poignant, the conversation a mix of talking about his progress and how he does at some point learn things we had thought he wouldn't; discussing preventative measures for really serious behaviors; learning that, when Charlie turns 21, he will finish out the school year in June and then, hello, very different, perhaps harsh world of adult services in which the word is not 'entitlement' but 'eligibility.'

In other words, planning for the future starts now (it's already started) even as we address the challenges of each day.

To stay focused, reasonably calm and avoid feelings of 'oh so now that we've got the school piece figured out such that we have completely cordial, informative, productive IEP meetings in which we feel we're all part of Team Charlie -- now it'll be all over in six years and then....' -- I've been (besides the inevitable researchings, phone calls, inquires about 'everything after your child ages out') memorizing the first 10 lines of Homer's Odyssey.

 

What Every School Needs

 

The student government at my college brought in this mega-inflatable slide. I was raising my eyebrows (ah, so many other ways to spend those funds...) until, walking to my car to Charlie's IEP meeting after teaching my Friday classes, I ran into a student. He was looking at the giant slide (complete with plastic pine trees) and I don't think I'd ever seen him look so happy. I couldn't help but to admire the slide with him. There was to be an ice-skating rink, too -- it hadn't yet been brought into my college's small central square -- my student was on the lookout for it and said, 'it's going to be awesome.' He asked if I were going to stay around to skate and I said I had to go to a meeting for Charlie and to be sure to take photos of the rink for me.

'Ice skating! I'm doing it!' said my student before heading into a classroom building.

He's just 4, maybe 5 years older than Charlie. Just having fun should always be part of the curriculum, don't you think?

 

Watching For Bipolar

 

So, after an extra special weekend, Charlie did have lag on Tuesday. He had been, his teacher told us, the happiest at school he's been in weeks, all smiles and animated. Then right around 2.30 pm when it was time to take the bus home, boom.

The change was so sudden that, later -- after Charlie had stepped smiling off the bus, gone for a bike ride with a brief teary moment and had a quiet, easy-going evening around home -- Jim and I were reminded of our discussions with Charlie's neurologist about the possibility of a diagnosis of bipolar disorder for Charlie; there is some family history of bipolar. We have certainly dramatic, extreme swings in Charlie's moods at times throughout his life and one of the medications he is taking already addresses some of the bipolar. We of course are happy when Charlie's happy but have also learned to cultivate a bit of wariness, aware that the ups can come crashing down.

I can also see the mood swings stemming in part from hormones -- we're doing fine 'surviving adolescence' but things continue to be 'interesting' -- but, again, we've seen Charlie go from giggle and grins to distress that is expressed with a fierce physicality and, at times (not so much of late), self-injurious behavior. And there's the family history (my mother-in-law and some others, perhaps).

That's why the notion of 'keeping the peaceful easy feeling' has been important. Charlie is also incredibly attuned to other people's emotional states and often I think, he's reading our moods and fits his to ours, as much as he can.

 

 

Something Old and Something New in Jersey City

 

 

On a rainy day, the clouds did part so Jim and Charlie had a bike ride at Liberty State Park, site of many a previous fine bike ride. After the ride, Jim and Charlie did something new, a little walk in some other parts of Jersey City, with someone who's part of a local group to preserve some older structures (specifically, a train embankment). We thought Charlie would prefer just to stay in the car but he called for a walk. I wasn't able to go as someone had to stay and keep an eye on the bikes and Charlie did call several times for the white car but he and Jim got a bit of a look around.

On the way home, Charlie started crying: Sometimes when you hold it all together and do a good new thing, the stress expresses itself afterwards.

Charlie continues to listen to a fair variety of music, moving from the Replacements to the Kinks and Barney with a tap of a finger. Teenagerhood is a time of jumping-around emotions; of one moment wanting to seek out the new and the next just wanting to hurry back to the familiar shelter of the faithful white car.

So Long As We're Riding It's Good

After Sunday's episode regarding shiny tan car #2, Jim got Charlie to get back on his bike and they finished their ride.

Monday afternoon, Charlie popped right up from the blue couch where he was sinking into a nap and said 'bike ride' when Jim walked in the front door from the train.

I am quite sure that Jim had been thinking about this bike ride all day, through teaching and talking to students and traveling to and back from New York. He and I had agreed, best not to go down the street with the car for awhile. Jim has no problem designing new bike routes but Charlie, creature of order, has considerably more struggles to try something new.

But even just getting on the two-wheeler eight years ago -- really twelve years ago, as that's when we tried to get Charlie to sit on his little red and white tricycle in our St. Paul living room and put his feet on the pedals and his hands on the handlebars (after which we pushed him while he sat stiff as a statue) -- all this was once new to Charlie. While there has been quite a bit of tears, 'gnashing of teeth,' parents getting scraped by parts of bicycles, along the way, Charlie has somehow managed to rise to the occasion, in his very balky way.

He and Jim went down a different street Monday and then a few more, for a good long ride in the waning, waning days of summer. Charlie was weepy when they rode onto our front lawn. He's got some major stomach disturbance going on, plus a plague of acne, plus the sads and the lag after Sunday.

But Charlie still asked for, and rode his bike. I think he knows, he needs to keep moving on.

 

A Good Shave

 

Saturday morning, Jim took Charlie to the barbershop (it's 5 minutes from our house) not for a haircut but a shave. At an (actual) haircut a few months back, Jim had had the barber give Charlie little 'cleaning-up' in the mustache/beard area; he had afterwards concluded, the best way to get Charlie a close shave is regular visits in the barber chair.

Shaving is one of those topics I have never wanted to confront. Aside from having no idea how to go about it, the thought of having to put any sort of blade near Charlie's face was simply terrifying. Your son having to shave is a sort of parents' Rubicon, a sign that the little boy is no more.

The physical changes of adolescence have plagued Charlie since he was about 11: Growing, body and facial hair, hormone, acne, and all that. He does not receive any sex education in the sense of learning about the male and female anatomy; it's up in the air what he would absorb from such a presentation. He is learning about safety, security, strangers. We've talked about him 'growing up' and there being lots of 'changes' and tried to be beyond sympathetic, Jim and I having both found adolescence a particularly unpleasant and unhappy time. [16:00, 18 Sept 11: I edited this paragraph a bit to clarify things upon reading the comments below.]

Jim has regularly been using an electric shaver on Charlie's face. Using a real razor and shaving cream is down the line but no one is looking forward to Charlie getting a cut. The electric shaver only gets so close and the barber option seems viable (and it has an added bonus: the more times Charlie does something, the more used to it he is). The barbershop has been very welcoming of Charlie since the youngest, newest barber, Mike, starting cutting Charlie's hair when he was 8 years old. Usually Charlie gets his hair cut by Antonio, a retired school custodian, but he wasn't in the shop yesterday morning and Charlie accommodated readily to someone else shaving him.

Certainly he must feel more comfortable, in a sensory way, with a nice shave. Looks aren't everything, of course, but what can I say -- minus the shadowy mustache and beard, Charlie looks not only less, ah, scruffy, but his actual age (instead of 17 or older, as he's often mistaken for).

After the shave, Charlie had a smiley Saturday. There was a massive tag sale going on in the NJ horse country town near where he and Jim ride on the trail and Charlie wanted only to do five miles. He got in his ride miles at home and was mostly in an easy-going mood all day (minus a few minutes of intense rocking in the car.)

Yes, Charlie and Jim are poised to become quite the regulars at the barbershop.