We Go With Him

How far today?

A lot of the posts I write at Care2.com don't have a ton to do with Charlie or autism but two I wrote today that do. One post is about the US Department of Education issuing guidelines about the use of restraints, seclusion and aversive procedures to public school officials; the other is a new study that found that children are getting weaker, using the computer more and spending less time being active outside.

We've unfortunately had to address the issue of restraints and aversive procedures in previous school placements for Charlie. There's a petition here to urge your representative to support a bill about restraints and seclusion, the Keeping All Schools Safe Act. 

Charlie, as you may have noted, has become -- despite regular and frequent iPad use -- quite the opposite of 'weaker' thanks to regular physical activity and exercise. Saturday had the requisite two bike rides, the first in New Jersey horse country:

 

Jim had it in mind for them to do something like 20 miles. Instead, they went off-trail and tried some new roads, including some quite steep uphills (for some of which, they had to walk their bikes).

Back at home after a burrito and a bit of rest, Charlie called 'Dad bike!' with the smile you see in photo #1 of this post and off he and Jim went to bring the day's total up to 30.

Later in the evening, Charlie and I went for an evening walk around our neighborhood. It's a very pleasant time of year here when the nights are still a bit cooler than the days and you still need to wear a sweater. Charlie has been walking on these walks after turning them into sprintfests the previous weeks. He also occasionally makes some chortle-growl sorts of sounds that tend to evoke barks from dogs inside their houses. Sometimes those barks make him run but not last night.

The walk had a soggy end as Charlie decided he wanted to pass through a schoolyard (and the grass had not been mowed) and then a large field (which was partially mowed, but which had some mega-puddles). He was game as always to plod through. Sometimes I wonder if he doesn't mind getting wet feet -- he is matter-of-fact now about riding his bike in rain showers, that's for sure.

In other words, a little walk can be quite an adventure for us.

I know the majority of my posts have been illustrated with photos of Charlie getting ready to ride his bike or on his bike. Indeed, often it seems that our days are a series of exercise sessions punctuated by brief spates of rest. Certainly one thing we've all learned is that regular physical, aerobic exercise and activity play a huge role in helping Charlie to keep away the behavior storms and to help him sleep (when he does sleep, that is), as well as giving him huge boosts to his self-confidence and sense of accomplishment (especially for a child who tends to need supports and accommodations for much of what he does). Intergrating regular exercise and physical activity into Charlie's schedule has been a quite successful pro-active measure to address 'behaviors,' and one far better than restraints.

Truth is, Jim and I equally enjoy the active life with Charlie. Certainly it gives renewed meaning to the question of 'how far will we go today?' Now that 17 or 18 mile bike rides have become routine, I often feel, the sky's the limit.

Post #1293

I started writing the earliest incarnation of this blog, then titled My Son Has Autism, back in June of 2005. Though this blog has changed names (it was Autismland for some time before becoming We Go With Him---Jim, my resident wordsmith, coined both names) and even web addresses (it was originally at http://mysonhasautism.blogspot.com and then at http://kristinachew.com and now at http://autism.typepad.com), and though I took a bit of a hiatus from writing here while writing Autism Vox (http://autismvox.com) and then co-writing the autism blog at Change.org (http://autism.change.org), I think I can say I have written something about Charlie and autism in some online space every day since the 18th of June, 2005.

Whatever this blog's name, it has always been meant to be a space to write about Charlie and Jim's and our lives raising him, a child on the moderate to severe end of the autism spectrum. It's meant to be a chronicle, a journal in the basic sense of the word as a daily account (jour being 'day' in French), and also a public record about the realities of raising an autistic child as frequently difficult and heart- and soul- wrenching, sometimes messy, often a bit wearisome on the bank account and---may as well get real---the body and the psyche, while always meaningful and (even on the worst days) full of joy, beauty, and love.

That sounds like a bit of a manifesto, doesn't it?

While, in the early days of blogging here, I occasionally talked about 'issues in autism' like vaccines, I decided that I preferred to keep the incendiary stuff a bit separate from Charlie's story. Autism Vox and the other blogs I've written have been wonderful places to write about autism from more of a political/advocacy angle. Currently at Care2.com I've been writing both about autism and disability and also about topics quite unrelated to them. To everyone who reads what I write here, or who has read what I've written elsewhere, thank you.

I'm over-the-top honored that  We Go With Him has been included among Babble's top 25 autism blogs of 2011. It means a very lot that this little space where I record the mundane details of our daily lives has gotten such recognition.

Babble's description of We Go With Him notes that my focus is on 'Charlie's activities rather than his autism' and that I present 'him as a growing, active boy who loves to bike, run, and pursue other adventures.' I really see We Go With Him as all about our adventures with Charlie. Sometimes these are the same from day to day (all of those bike rides); sometimes they are unexpectedly hair-raising. Some have taken the three of us to repeated visits to the ER. Quite a few of these adventures happen at the beach--yes, the Jersey shore (which is not only the tawdry land of bars and debauchery presented on that reality TV show)---and, lately, all of them happen in New Jersey as travel has become more unsettling for Charlie as he has gotten older. When he was little, we used always to take him on trains, planes, subways, and ferries. Adolescence was not kind to Charlie, I have to say; it was when he turned 11 that we started to have to give up those adventures that took us beyond New Jersey. 

But I'm a firm believer that adventure is to be had everywhere and anywhere, even on one of the long walks Charlie did with us numerous times last spring, summer, and fall. These walks followed an old bike route of Jim's and Charlie's and involved walking through such really exciting settings suchas drugstore parking lots, out-of-use freight train tracks, and cracked and unweeded Jersey sidewalks. Other of our travels take us on grand tours of anomalous New Jersey suburbs (though there is always more to meet the eye) and, again and again, to Jersey City, form which we get a fine view of lower Manhattan (without having to visit it).

Life with Charlie is a grand adventure. Three times since I started writing this blog I've been fortunate to travel to Greece with groups of my college students---yes, those were some adventures, too. Much as I love Greece, I know the best adventures I've had are always those with Jim and Charlie, often (of late) in our trusty white car (which has been driven a shocking amount of miles, considering we have not yet had it for 2 years). We do go with Charlie, and it's a good, a great, life.

So let me tell you about one more day of this life, Wednesday the 13th--the Ides---of April, yesterday.

The day began at 4am when Charlie woke up. As I was groggily helping him prepare something to eat, it occurred to me that this early wake-up could presage a boy ready to go to bed earlier (these days, Charlie is often awake till midnight). On Wednesdays, an earlier bedtime for Charlie is especially preferable, as Jim teaches late on Wednesday this semester and Charlie insists on waiting for him, even falling asleep on the couch once.

Charlie had another good school day. His school was supposed to have an autism walk in their quite large parking lot, but, due to the rain, the walk was held indoors. Charlie enjoyed it, his teacher wrote. Later, while he was bouncing around on a huge exercise ball as part of his leisure schedule, the ball popped under him and he got (understandably) upset, but in a contained kind of way. Indeed, he cheered up quite soon. In the early evening, he had his third swimming lesson and while he did some powerful moves through the water, he was (his instructor noted) less focused than last time (but 4am wake-ups and popping exercise balls can do that to you). Driving home, he must have been starting to get really tired as he said 'bedtime' about every 30 seconds and I confess, at one moment I really thought of telling him to be quiet---only, of course, all these years of ABA and speech therapy have taught me, telling Charlie to be quiet is the surest way for him to be even louder and more verbal.

And who am I kidding? Once upon a time we worried Charlie would never talk and here I was thinking of telling him to stop talking!

I guess you could say that shows you how very far this boy has come. Just like his mother and father, Charlie has a lot to say.

A huge part of this adventure has been us learning to listen for his words, and, always, to enjoy the journey.

 

Always Something to Blog About

This was going to be a thoughtful and meditative post about how blogging as a phenomenon has changed over the years (i.e., random musings after reading a New York Times article) along with an account of a pleasant biking trip on Sunday morning but after I hit 'publish now' I got a fatal error message and realized I had just copied over the copy of the post I had written. 

So I thought I'd post the real highlight of the day and of blogging in general for me, our lovely smiling boy happily waiting in line with Jim to get a piece of carrot cake at a general store in a town in New Jersey horse country; a lovely boy loving to be out in the world.

That's why there's always something to blog about, yes there is.

To My Fellow Travelers & Commadres in Autismland

I have added a list of blog-friends, Fellow Travelers & Commadres in Autismland, over in the right sidebar-->.  I linked to some of your blogs and sites sometimes using the actual name of your blog/site and sometimes using your name. There's not any particular rhyme or reason to it; hope what you see is all right. I've moved around a bit since I started blogging five summers ago and think I'm going to be settled writing here for the near and not-so-near future.

I've listed everyone alphabetically, which makes for a long list. If you don't see yourself listed there (I know I have not mentioned someone, argh!), please leave me a note with your site in the comments to this post and I'll get a link up pronto.

I know the long list is a bit unwieldy. But I like having everyone whose blog, website, writing, life has somehow intersected with our corner of Autismland all in one space (that is, list), with parent blog next to that of self-advocate next to an autism book next to whatever site happened to be next, alphabetically. I like the juxtapositions and combinations, rather than pigeonholing blogs and sites into neat categories.

Too, unusual and unexpected juxtapositions are the norm in the life of our little family.

On our kitchen table if the 'I can set the table' placemat an ABA therapist bought years ago for Charlie is the latest volume of the Transactions of the American Philosophical Association (TAPA---with 'fun' articles on topics like the law of contracts in post-classical Athens (high time I started prepping my fall semester courses, you know); an IKEA catalogue (that we've absolutely no plans of ordering anything from, or using for interior decorating inspiration---three people in a smallish house with an awful lot of books and papers and things makes for inevitable clutter, but there is an order to it and a little clutter is not a bad thing for Charlie with his rage for order); the schedule for the town pool that Charlie has refused to swim in all summer; party favors from my California cousin's daughter's 21st birthday; a basket I think someone gave us full of something besides the paper napkins it now contains for our wedding; a pinwheel from a gift bag from one of Charlie's classmates' mothers; two dollar bills that, having been 'laundered,' are drying.

(Actually, all of my cousins, except for one, are California cousins. But I digress.)

The table itself has been put to a lot of different uses since my parents first bought it for me from the Conran's in New Haven, Connecticut. It was the kitchen table in my first apartment and supported many a dinner party with my grad student friends as well as hosting a few other portentous encounters. When my French computer science neighbor sublet my apartment for his parents to stay in one summer, they or he wrote a telephone number on something that must have been rather thin, as the numbers are permanently etched into the wood. I wrote my dissertation on this table (using the first, steel grey Powerbook) and the table was carted around from Connecticut to Massachusetts to Missouri to Minnesota and then all over New Jersey. Jim and I dined on that little table when we first lived together and in post-wedding, pre-Charlie days, and Charlie sat at it, propped up in his teddy bear print high chair. After many more (sometimes messy, sometimes merry, sometimes--le sigh---morose) meals, Jim used the table to write the early drafts of his book. When we lived in Jim's parents' house, the table again became my desk---a small piece of familiarity---and then again was Jim's in our apartment (the one where the neighbor informed us after a very days that we needed to cut down on the stomping) and then was plunked into the back of the black car and brought back to our house, to be a kitchen table once more.

I'm not sitting at the table to write this (a laptop is a laptop). But just as my---our---kitchen table is where so much from so many corners ends up in our house, so this blog is for me a kind of catch-all space to try to bring together the bits and bobs of our life. Obviously the focus is on Charlie and autism. But when writing about autism, there's a lot more to talk about than what Googling produces.

Like country roads (complete with hay bales) in lovely central Jersey.

Like boys on bikes. (Well, I guess I've rather made this a theme in these parts.)

Charlie helped us out immensely: He'd gotten into the car at 8.30am, ready to go on another (promised-the-night-before) biking adventure. I suspect he remembered that we'd forgotten the bike helmets last Sunday and had to double-back home for them: Yesterday, as Jim and I were loading up the bikes, Charlie got out of the car, ran inside, and returned, with the helmets. I'd say it's his job now to remember them!

He and Jim did the country bike path so handily, Jim led Charlie down the streets of the little town and around over a bridge and back up onto the path, to make the ride some 12 miles. They also did another 10-miler in the late afternoon on their 'home course.'

After traveling on different paths, it is good to be home. So says the ancient Roman poet Catullus:

o sweet gatherings

of fellow travelers,

be well! once

you all took to the road,

went away from home.

different the roads

that bring you back

from different quarters.

from Catullus, poem 46.9-11

 

However, friends you got here, thank you.

(Translation of the rest of Catullus' poem 46 follows.)

 

 

We Came We Blogged We Talked (face to face)

20 years ago I took my first train ride into Manhattan. On reaching the city, as the train pulled out of the tunnel, I got a glimpse of buildings (tall, sooty brown and grime grey), a bit of sky, and the train tracks.

Yesterday I saw that very same vista.

5 years ago I started blogging about Charlie and Jim's and my life.

5 years was when a couple of my friends started blogging too.

3 years ago I went to a BlogHer conference for the first time in Chicago.

2 years ago I went BlogHer again in San Francisco and met Shannon, Jennyalice, Kristen, Jordan, and Mary, and how many other mom bloggers?

Yesterday I went to BlogHer.

Recalling my chicken frosh self of 1990, I felt a little glee to be making my way solo through the Garden and up Avenue of the Americas to the conference hotel where I immediately met Niksmom.

And then Estée and Kyra whose blogs I've only followed for how long?

And, at a panel on autism and blogging, Carol and Stimey and Angry Black Bitch who (along with Shannon) each mentioned an autism myth and debunked it:

'Everyone autistic is a savant.' Not.

'There's only one way to be autistic.' Nope.

'Autism is not a childhood disease.' You said it.

'Autism means a life of misery.' No way!

I confess I didn't go to any other panels. The rest of the day was more than full of many riches (some in somewhat excessive quantities):

• plenty of lunch (nice little change from yet another Sodexho sandwich)
• a tour de Swag which left me with more reusable grocery bags than I knew I needed, random packages of Pirate's Booty, weird cookies, and soy bars in three flavors, and a Jimmy Dean alarm clock that I intend to put to good use (when I can figure that out)
• lots and lots and lots of good talking about lots and lots of things with a couple of women whose lives I've known a bit of through their blogs over the years, but nothing beats sitting face to face with breeze blowing and the sun shining in Central Park
• a limo ride (actual $$ cost: very little----happy laughs and silly, happy photos: yup, priceless)
• a very nice dinner with a little too much noise of a raucous kind from the next table and (despite that) more good conversation.

It was equally good back on the homefront. Charlie's teacher called me in the afternoon to explain about how he was clearly tense going into the grocery store on his class's weekly shopping excursion. Charlie started talking about the bus and then saying 'white car Dad,' so his teacher knew it was indeed the bus that was worrying him. Then Charlie swiped some bags of marshmallows of a shelf. He got over that fast, bought a box of crackers, and (once back in his school classroom) laughed and grinned when reading his 'taking the bus home' social story.

Jim met the bus and Charlie at home and then it was

• 1 10-mile bike ride
• 1 burrito
• 1 10-mile bike ride
• 1 3 1/2 mile walk

And when I walked into our house from the train, 1 boy out cold on the couch after yet another action-packed, and fun, day with his dad.

A Bit of Poetry

 I've been doing some blog upkeep/redesign and letting my inner geek indulge itself. I changed the banner photo from this to this and have been mucking around with the content in the right column (and even thrown in a photo of myself, since, as has been commented upon, the photos I regularly post rarely include me as I'm the family photographer). Don't be surprised if you come to this site and find things looking even more changed as I've not been able to resist trying out new templates and layouts and arrangements of columns and fonts and all that. 

I have a fair bit of inner geek to express. A significant percentage of my family members are either engineers or do 'something that involves computers i.e. they work in Silicon Valley.' As a Classics professor and avowed upholder of the humanities, I guess I could qualify as a black sheep except that, as you may have gathered, I like fiddling around with html code and computers and one could say it was a curious twist of fate that led me to become someone who knows the Latin and Greek root words of 'computer' and 'program' and 'digital' and all that---of 'silicon' too. At some point I'll get to a format that I'm pleased with (probably something very close to what you see already) and have to find other things to do, to distract myself from translating Virgil's Eclogues.

The Eclogues are pastoral poems. Their setting is the (ancient Italian and Greek) countryside; their characters are shepherds, goatherds, and neatherds (they take care of the cows, if you were wondering); their topics are generally love, poetry, and praise of the glories of the countryside versus the hectic, busy, potentially immoral life of the city. Sometimes a shepherd etc. has to go into the city; he longs, then, to return back home to the simpler good life in the countryside. Indeed, the first Eclogue is about two shepherds who meet on the road; one has to leave because a soldier has been apportioned his land, while the other is happily settled on his farm, as assured by no one less than the Emperor.

That's probably a bit more than you wanted to know about the Eclogues and on an autism blog, no less. I just went into a little detail because of the motif of going and coming, coming and going, in the first Eclogue. This blog is, after all, entitled 'We Go With Him' (it was 'Autismland' in an earlier incarnation, and, before that, 'My Son Has Autism'). And much as I liked the old banner photo of Charlie on his boogie board, I sometimes looked at it and thought, if it is 'we go with him,' then we're all following Charlie out into the ocean. Too, it seemed time to update with a more recent photo of Charlie as he's grown tremendously in the past year.

So, the new photo. The original photo was on this post, 'Solo,' and at the risk of sounding a bit grandiose, I consider it a shot of 'pure poetry.' I like that Charlie is running towards us, after a triumphant boogie-boarding and swim session in his beloved ocean, and at his favorite beach. He handles the board (still strapped around his left wrist) and he's running a bit à la Baywatch or like any ole surfer dude. When I think of how long it took to get him to being able to handle his own board, not to mention catching a wave with it in the ocean---and, going much further back, to learn how to walk (Charlie was 16 months old before he was able to do so)---not to mention the myriad of challenges that Charlie faces every day, and not the long long list of limitations he lives with---the photo captures something about Charlie that gets so very overlooked and forgotten as he forges ahead day by day.

Thursday began at 5.30am. Charlie woke up and showered, and he and I went walking (with me reflecting how much easier it is to get out of bed at 5.30am when it's not dark and cold). He had a fourth great day at school in a row, and then a bout of distress in the car driving home that involved a soda out the window and me pulling over and us taking a short walk down a row of houses and then a quiet trip home. Quiet, because I turned off the radio (it was the R and B hour on the jazz station and I was kind of feeling that they were playing Howling Wolf one too many times) and because Charlie was completely quiet, as if reflecting in a rather shocked way about what had just happened. 

He wanted a walk as soon as we got home which I thought a good idea; Charlie has been usually been requesting the computer once home, these past few weeks. Jim met us mid-walk and he and Charlie then went on a bike-ride. Sometime during dinner and computer and music-listening time, Charlie became much more relaxed and smiling, as if whatever had led to the in-car distress had at last worked his way out of his system. One more jaunt around the neighborhood with Jim and Charlie was very glad to go to bed, after another day of comings and goings together.

Now back to a little more blog design tweaking. And Eclogue 7.

Gravity

It's here!

Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum, edited by Kyra Anderson and Vicki Forman, just published by Woodbine Press. And containing the writing of many parents, some of whom I've had the good fortune actually to meet and share a meal with (Vicki herself, Bruce Mills---we've met his wife and children Sara and Jacob too, Ralph Savarese, MothersVox, Kristen Spina, Barbara Crooker).

I've yet to meet Kyra in person. And also Mary, Christine, Emily, and many others. I've been very fortunate to get to know these parents and their families through their writings and, in many cases, through their blogs. Mary's blog was one of the first I read when I started blogging back in June of 2005 and I still remember the little frisson I felt on reading about her boy Bud and thinking, a mom like me! and she writes about it!. And then a long day  seemed less so, even though it was but 3.00pm and Charlie and I had already done summer school, a trip to the store, a trip to the playground, a trip to the pool and were now relieved to be back in the safe, if isolating, confines of our house.

Wanting, needing, to reach out to other families who have a child like Charlie, to individuals on the spectrum, and sharing stories about our long road of a life with our boy: That's why I got started blogging. A few too many posts on vaccines aside, it's remained why I keep writing here.

I want to write more about all the writing in Gravity Pulls You In, once I read through and reflect on all the pieces. A quick read here and there has revealed many sparks, many experiences that I know will ring too true with ours. My little piece is entitled "The Wages of Autism" and is stitched together from some of my favorite posts on my old "Autismland" blog, "The Wages of Autism," "Autism Hearts Club," "Ache." As you can gather from those titles, it's an essay about love and loss, and about the curious currency a parent finds herself gifted with in raising a child who, like Charlie, is different. 

Valentine's Day having just passed, it seems more than appropriate that I just got my copy of Gravity Pulls You In. I reference "love of the Valentine's Day sort" at the start of my essay, in the context of an Intermediate Latin class I taught in the spring of 2006. There were only three students, all female, in that class, and our translating of one of Cicero's orations on the Catilinarian conspiracy de-, or rather e-, volved into a musing on the god the ancient poet Sappho called "Eros the Bittersweet." 

Life raising a child with as many challenges as Charlie can indeed be  "bittersweet," tinged with moments too lovely and beautiful, and others that are pretty, very difficult. I wish some things---many things---could have been easier for Charlie. Wish we could figure out how to quell the neurological stormsin his head more quickly, more effectively. Wish he'd hit puberty laterather than early and been a skinny guy who Jim could still piggy back in the odd moment. 

But we never, ever, wish for a boy other than Charlie to call our son. 

It's been four years since I wrote the blog posts that became my essay. We live again in the house in which I wrote them. Charlie goes to a different school----a "separate" school, for autistic children---now. He's almost as tall as Jim.

After snow days and a long weekend, the three of us were not happy to find it snowing Monday night and Tuesday morning. But no text declaring "school is closed" appeared on my phone and so up to the Big Autism Center we headed at 8am. Jim's figured out a new route that avoids a major road-work-traffic-jam-creating-snarl; now we drive through some woody hills. Thanks to said snow, it was something of a winter wonderland, the tree branches trimmed in fresh snow. Charlie was already glowing at the prospect of School! and he remained that way on telling us "this way, this way," as drove into the school's (large) parking lot. An aide who's not in Charlie's class appeared and asked if it was ok for him to take Charlie to his room and Charlie went right in. 

Great day, with a random yelp here or there---something new Charlie's been doing, that (we hope) is serving as an occasional "replacement behavior" for other ways to express his pent-up feelings. After school, we shopped, went to Walgreen's, walked (Charlie really wanted to snack first, but he ended up being fine getting in some exercise beforehand). He told me "dad here, dad here" when I explained Jim had to work late in his office. My own mind was swimming amid planning an information session on scholarships for Thursday, more preparations (like insurance and passports) for the Greece trip and a meeting with students (today), a recommendation to write. And then Charlie, after taking himself to bed at 7pm, wanted a walk at 8.15pm.

It was cold and windy walking across the snow-packed field and the word gravity, gravity, kept entering my thoughts.

..... [Gravity] does pull you in, not just to the center of the earth, but to the center of yourself, if you let it. (p. xiv)

as Kyra wrote in her Preface.

This low-gravity parenting journey has me floating in space, sometimes feeling light years away from the known or the familiar. And yet, as I move into the vast expanse before me, I only need to look to Bud for a cue to reorient and realign my orbit....... (p. 82)

as Mom-NOS writes in "Live via Satellite: A Parenting Journey."

How grounded we are because we're on this long road with Charlie, Jim and I know, down to the soles of our shoes all snowy and muddy from round-the-clock walks. How, too, glad we are to have this grounding. Often when I'm so tired I don't think I can do one more thing, knowing I need to be there for Charlie, knowing Jim's always ready to spring up to go out with Charlie, I find I have veins of energy I hadn't known I could tap into.

The three students I wrote about in "The Wages of Autism" are gone from my college, one having transferred after only a year;  one now in graduate school; one teaching full-time and engaged. Yesterday morning I was teaching another Intermediate Latin class, with three students (one young woman, two young men). I had asked how the long weekend had been. "Over," said one student and we all opened our books to the story of Orpheus and Eurydice as told by the Roman poet Ovid in his Metamorphoses. 

We paused over a sentence with the word gravior, the comparative degree form of gravis, "serious, heavy, weighty," the students noted the definitions. 

"But it's comparative so that means it's.....," I said.

"Graver," one student (the student who'd said "over") answered, almost under his breath.

"So heavier, serious-er," said another student, as she wrote in her notebook.

"Yes, and weightier," I said. "More weighty."

Yes, being the mother of a child like Charlie does mean life is gravior for me than in the days when I first read Ovid, and Cicero, and Sappho, and worried about not having a date on Valentine's Day or the calculus test tomorrow. 

And the strange and lovely thing is, this gravior life rests lighter on our shoulders. Even when the ground shakes, we know how to shift our weight to sway so that, while we may fall a little, we're still standing.

 

Delayed Opening Can't Get Us Down

I wrote about the retracted Lancet study by Wakefield et al. and about restraints and seclusion over at Care2.com   (though the latter post may not yet have been published when you read this the post is now up)---about two issues that have been something of long-time preoccupations with me, though not very willingly. Vaccines have usurped attention from so many other pressing issues and restraints and seclusion just are not an easy thing to write about.

Charlie's Wednesday was far away from either of those topics. It snowed just enough on Tuesday night to call for a "delayed opening" on Wednesday. Rather than rolling over under the covers in joy, Charlie got right up and was ready to hop in the white car, so off we went. We had over an hour to kill, I mean wait, when we got there---and we weren't alone, as several other buses were already lined up. I do hope that Charlie can take the bus one day but for the time being, I'd rather we can drive him. I know he would not have been happy to wait for that long on a bus---many of the other kids definitely were not, with some of the buses rocking and thumps emitting from within. 

"Delayed opening" meant school started at 10.45 am, two hours late---I know there are all kinds of administrative reasons to contend with, but just opening a half-hour earlier would most likely help.

Charlie had a very good day at school and, too, at home, with short walks (intermixed with sprinting), an ardent desire to see photos of some of his old toys on the Internet; indulging in too much lop cheung, Chinese sausage (brought by my parents, who are visiting for the week); deciding it was time for the two dogs to go into the garbage too (fortunately my dad remembered to retrieve them and they are now stowed away in a big blue bin). Charlie took himself to bed at 7.30pm, got up after an hour and my dad and I went out to walk with him again, after which Charlie was for sure really ready for "bedtime."

Happy Thursday to all---no sign of snow here so ours will be getting off to a much more routine start.

It's the End of the World as We Know It

This post is about the difficulties of writing about something very difficult, self-injurious behavior and, specifically, head-banging. Things which I, prior to having lived through many things with Charlie, would have said were tantamount to the end of the world as we knew it. 

Being honest about the difficult things that happen in our lives has always been part of my blogging since I started writing about Charlie online in June of 2005. I used the word "bittersweet" in yesterday's post and maybe that's the word that best characterizes my blogging about Charlie, in that there are lots of tough moments when, indeed, SIBs occur, and there are lots of happy, lovely times when it just feels good to be alive, going through the daily journey of our lives together. But somehow, it often seems that "honest writing about autism" means emphasizing what's difficult about life with autism and one comes under suspicion of wearing rose-colored glasses if one is "too positive and upbeat."

Charlie was a toddler when we first saw him hit his head. Observations by numerous teachers, therapists, behaviorists, and others have led to a conclusion Jim and I have reached ourselves: Charlie does this for a number of reasons and helping him not to do it has, in his case, called for: ABA, medication, lots of physical and aerobic exercise, being watchful about Charlie's diet, some biomedical remedies (when Charlie was younger), picture schedules and activity schedules to help him through transitions and to show him what to expect throughout the day, teaching him to communicate and express himself (through sign language and speech, primarily), attentiveness to  his sensory sensitivities (noise, different textures and smells), leading him through and away from whatever he might be perseverating on (again and again we've seen the pattern of Charlie becoming very, rigidly, obsessive-compulsive about something and then head-banging). There have been long periods (a couple of years) when head-banging has been minimal. Entering adolescence has seemed to lead to an increase in head-banging, unfortunately; coupled with Charlie being adult-size, it is a whole different game to handle SIBs and other "challenging behaviors" of all sorts.

Too often, Jim and I find that, at IEP and other meetings about Charlie, SIBs and "challenging behaviors" get mostly talked about. The result is that some 90% of our attention gets focused on something Charlie spends a very small percentage of his day doing. Of course, the severity of SIBs means that there has to be a lot of talk about it, to teach Charlie other ways to handle sensory overloads and to express himself. But somehow in writing about autistic children, there often seems to be an overwhelming tendency to go on and on about the 4% of the day that was difficult, and to skim over the remaining 96%. Certainly there's a huge need to talk about that 4 or whatever percent: Most children don't bang their heads into walls on a regular basis and most people are neither able nor willing to talk about this sort of thing. 

It would be easy for me to fill up post after post about that 4%. But even on the day when Charlie (sigh) broke the window at the doctors' office with the back of his head and the EMTs appeared, he spent the rest of the day waiting patiently for hours in a crowded ER waiting room and let a strange doctor examine his swollen mouth. It would be dishonest of me to say that that Saturday in December was a totally awful day because---while it had some low moments, you can be sure---it had plenty of good moments. All of our days with Charlie do.

I've also learned a few things from blogging for almost five years about autism and Charlie, both on this personal blog and also in more public venues like Autism Vox and the autism blog at Change.org. Charlie is a lot more than his most challenging moments and I think it's important for his dignity and his privacy, and that of our family, to represent the reality of our life not as segment upon segment of "autism nightmare without end," but as beach trips and bike rides and writing lessons and sweet silly moments. Readers can say whatever they wish, but I am Charlie's mother. After one Autism Vox post led to comments from someone asking what was wrong with me, hadn't I tried giving my child Vitamin C to stop the SIBs, I realized that I didn't care to have my child and his struggles discussed so casually. 

So yes, "neurological storms" can be real intense---real bad---around here. There's a bump on Charlie's forehead that won't go away, the doctors told us. There are a number of holes in the walls that Jim has been patching and painting. We're only using plastic dishes and cups since those don't break when they get thrown. The blue couch that Charlie likes to sit on is draped in blankets and pillows and soft things, just in case. We have to break up his video watching and CD-listening (in the car), lest he become over-stimulated and start knocking his head around. We're wary of motorcycles and police sirens, crying babies, shouting and coughing, and high-pitched voices.

One thing I have learned from all this is that often the most obvious solutions just treat the problem people see, without addressing the deeper causes. Thus did the school district (and their lawyers) insist that Charlie wear a helmet. But that blue plastic apparatus has been the equivalent of a putting a band-aid on something serious that requires much more examination. The "protection" offered by the helmet was limited at best. As Jim and I predicted, Charlie banged his head harder while wearing the helmet (which makes for really big holes in the walls). He probably started banging more while wearing the helmet (in part due to the discomfort of the thing?). 

The real solution (because you have to hope there is one) has been to think of head-banging in terms of sensory overloads, communication limitations, anxiety, frustration, and much much more; as something very complicated, that needs to be addressed in manifold ways, and with patience and understanding. So far, this seems to be happening for Charlie at his new school. The teachers have started fading the helmet off: Charlie is not wearing it now during lunchtime. They don't plop it on his head from the moment they see him, as his teacher and aides did at his former public middle school, but talk with Charlie as they walk to the classroom.

And as for the honesty and the reality issues. You can get a broader view about what it's been like, and what it's like, to raise Charlie, over on Jim's blog, The Irish Waterfront starting with this post All Along the Jersey Shore and, too, In Walked Charlie. Jim started the blog when his book came out last August and I'm very excited that he's decided to do more writing about life with Charlie and our life.

Tuesday started at about 4.15am for all of us, as that's when Charlie got up and got dressed. He poked around in the kitchen while I made coffee (may as well), watched some things on my computer, and then asked for "bedtime" and took himself back to bed---a new development, as he's previously seemed to think, once he's up, he's up, and he can't go back to bed till the evening. Charlie slept until 7.30am and had a good day at school, and an energetic walk with Jim. He helped himself to a pack of sushi and asked to watch YouTube on my laptop which almost got, um, decommissioned, as he suddenly got sick all over the place.

Jim helped Charlie get cleaned up while I shook out the slipcovers and blankets. Poor Charlie, looking rather gray, conked out on the stripped down couch for a couple of hours. He was edgy on waking, understandably, and looked eager when we mentioned getting into the white car. As Jim drove, Charlie got very insistent about listening to one of the same three CDs we've been listening to over, over and, yes, dangerously ad nauseam. He just kept handing me one of those three until I asked him for the CD case. I found an old REM CD and put it in and from the moment he heard the first bars of the appropriately titled "Drive," Charlie listened with big bright eyes. I impressed Jim by singing along to all the songs and we agreed, got to get more REM for Charlie, most certainly "It's the End of the World As We Know It."

And yes, we feel fine.

Outgrowing His Words

 Jim always tries to stay one step ahead of Charlie's growing feet by making sure we order the next size up in black nubuck Merrells. I ordered two such pairs in size 11 back in December and I know I'm going to feel that little twinge when I order sizes 11 1/2 and 12---Jim wears a size 11 but Charlie is going to grow out of his all too soon. Charlie's been taller than me for the past two years but Charlie being taller than Jim: We did figure it might, would, one day happen, but it's always a little different when the reality starts staring you in the face as you click the "size" box at Onlineshoes.com.

Since I started blogging regularly again in this space back in September, I realize that most of my posts have been about growing up. It's bittersweet for any parent. We have tons of photos of Charlie but it's only in the past few months that, in looking through them, I've felt, yes, that twinge in knowing that the days of outfitting Charlie in t-shirts with cute pumpkins are over.

(I know I could get him such a shirt, but I'm not so sure if such comes in men's size small.....and Charlie favors shirts in blue, black, and green over orange, red, etc..) (And if you cringe in looking at photos of your younger self in clothes your mother thought adorable but you thought something less, apologies!)

I also realize that I've been chronicling the parenting of a moderately-to-severely-autistic adolescent boy as an often harrowing experience. In looking over some of the things I've written (like this trip to the ER for an infected mouth sore or a really rough Sunday), I suspect that, were Charlie just diagnosed or 5 or even 7 or so years old, I'm not sure I would have wanted to read some of these posts, to know that adolescence can really be as hard it is; to know that, when your child is bigger than you, the days of swooping him (wailing and back-arching) up in your arms are very much over, and a parent must think of other ways to handle wailing and back-arching. The general hope would be that said wailing and back-arching would be over and done with for most children but this has yet to occur for Charlie. By this, I don't mean simply to suggest that he's locked into "behaviors" associated with children much younger than him. We know very well now that Charlie does such things to communicate. We also know how much he wants to communicate, such that he'll go to great lengths. Frankly, it means a great deal to us that Charlie has, and has always had, this steadfast urge to get his point across.

But while we can buy new shoes for his growing feet, providing him with more language that Charlie can call up when he needs: This is far harder than just clicking "buy now" on Onlineshoes.com. In the past couple of months, Charlie has been using no and yes to express a lot more than, well, no and yes---"maybe" or "I want that" or "give me a moment to think about it." As of Sunday, it's occurred to Jim and me that another phrase that's been doing overtime as far as Charlie saying it to mean a lot of different things is "I want to eat." Charlie said that in the car Sunday after our trip to the beach, before getting very upset. He then summarily turned down everything Jim and I offered to get him and only poked at things when we got home. 

Monday got off to a slow start (good thing Jim and I still have one more week off before we start teaching). The day unfolded peaceably from school to home and a chilly walk. Charlie did a particularly nice job writing the date and the word "Monday." He was eager to get in the car around 6.15pm for a ride, then, once hom, would not budge from the back seat. He told us "I want to eat" and we reeled off the list of contents of the refrigerator and cabinets, to many "no, no, no" 's. Eventually he came inside, said "no" to sushi and a steaming plate of rice, and told us "bedtime." And went up to bed, very peacefully.

Charlie's new habit is to have a mongo after-school "second lunch/early early dinner" snack; we feel pretty sure that he's just not always hungry as a result for the rest of the day. And we've started to think, when Charlie says "I want to eat," he sometimes really does, and, other times, he's trying to tell us that he wants something, something to satisfy him in a more figurative way, but he doesn't know how else to talk about it---maybe doesn't even know what else this would be. 

It's the sweet---sweetbitter?---side of seeing Charlie grow up, knowing that, even with all the challenges, he striving to tell us so much more than he presently has words for. 

I suspect that Charlie figuring out the words he needs is a lifelong project, like so much else of his learning.

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The days of Early Intervention are far behind us. But, really, Charlie's still at the early stages of the journey, of his learning and education. These, we believe, will continue throughout his whole life.

And that's why I'm very uncertain about former Alaska governor Sarah Palin being an advocate for individuals with disabilities. 

What am I doing mentioning Palin on this blog that sticks pretty much to chronicling Charlie's life and ours? 

I've just started blogging over at Care2.com. I was planning on my inaugural post being about (surprise surprise) autism but current events took precedence, and so I wrote my first Care2.com post about Sarah Palin being hired by Fox News yesterday. I did a bit of blogging and commenting about Palin when she was Sen. John McCain's running mate in the 2008 Presidential campaign, when I was still writing AutismVox. Since ceasing to write for Change.org, I've been glad to return to a more personal sort of blogging and will continue posting daily here. But it looks like I'm getting on my soapbox (or rather, soapvox) again---something new in a new year. 

(Along with translating Seneca---very good thing I still have one week off before returning to my classroom.)