We Go With Him

In the Country of Difference

 "If you've met one autistic child, you've met one autistic child." 

It's a statement that's totally impossible to disagree with. I've certainly said it, or variations thereof, time and time again in advocating for accommodations in the classroom, at the swimming pool. and elsewhere for Charlie. 

Much as that statement rings true, I think there's a bit of a dangerous side to it.  If we only emphasize the differences among our children (and ourselves, and our experiences), what do we have to talk about, to share, to find community in?

TH is the oldest son of Emily at A Life Less Ordinary?. He's is 8 years old and has Asperger's and he couldn't be more different from Charlie in many ways. And yet there are tremendous overlaps and parallels. Emily is now homeschooling TH after a pretty wrenching (understatement several times over) experience in the public schools. Unlike Charlie, TH was mainstreamed. Like Charlie, there seem to be some, what to call them, limits to what a public school is willing to do to fully accommodate kids who don't "fit the mold." (Though after reading about physical attacks on TH by other children, and by one girl in particular, I'm really wondering who're the children whose "behaviors" need addressing.) The outrage Emily's written about---coupled with extensive efforts to educate the school and others about TH and the autism spectrum---ring very familiar. We don't homeschool Charlie and, frankly, don't think it would work for him. But the seemingly eternal quest to find a way to create a world, a space, for our children to fit in, the dogged efforts to try to make that happen and the troubled feelings when it doesn't work out---for all the differences on the surface, I feel that TH's and Charlie's stories are very similar.

Dimitri is the only child of Emma at The Iron Chicken. He is 10 and has Angelman's Syndrome and lives in Athens; I was fortunate to get to meet Emma when I was in Greece with students last March. Dimitri and Charlie have different diagnoses and live in completely different places. Often when I'm reading Emma's accounts of taking Dimitri on public transport, of picky eating habits, of long days together, I feel like it's precisely what I've gone through taking Charlie on the subway (which we have taken an indefinite hiatus from); wondering if he's ever going to eat anything other than store-bought sushi or take-out in plastic containers again; recalling long hot summer days or freezing cold winter ones when it seemed that he and I had run out of options of what to do and it would be hours still when Jim could get home on the train from the Bronx. 

And just to strike a little note of holiday cheer, warmth, good will, peace on earth to all humankind and that sort of thing, I'm grateful so much for blogland, for making it possible to be part (however virtually) of a community of families with children with disabilities, of individuals with disabilities. 

Not everyone has to endure sending their child day after day to a public school environment that gets so hostile we just have to take our kids out.

Not everyone sights a stranger with, for instance, a McDonalds bag or worry beads, and goes on guard lest one's child tries to take those.

There's way too many other bloggers and blogs, friends and families and parents to note so, at the risk of getting mushy, I'll just send out a huge THANK YOU FOR SHARING. And just THANK YOU.

And having gone on about the benefits and community-building of blogging, I thought I'd mention a relatively new entrant into blogland who just happens to my dearly beloved fellow Autismland traveler, Jim. He's been writing more on The Irish Waterfront and not only about the book or the waterfront or "feeling Irish" but, more and more, this country of difference that we all have found ourselves inhabiting.

Update (#616)

Long time, no post here, I know......... Now that I have finished my spring semester teaching (and I have some weeks to go before teaching summer school) I am working on "the Charlie book," and very happily. Thanks to all who have sent me some wonderful, wonderful emails and to everyone for reading here about Charlie! He has been doing really well. I will be revising and redesigning this website in the upcoming weeks. I am still writing fairly frequently about the continued adventures of Charlie over at Autism Vox. The posts that are specifically about Charlie can all be found if you click on the Charlisms category (and I just put one up about Charlie walking over the Brooklyn Bridge, That Makes 15 Miles: The Holiday Triathlon).

The Autismland journey continues......

April 19, 8pm: Autism Mom-bloggers Reading in Brooklyn

Brooklyn Reading Works is pleased to present mom-bloggers, Autism's Edges and Autismland on April 19th at 8 p.m. at The Old Stone House at Fifth Avenue between 3rd and 4th Streets.

KRISTINA CHEW, a classics professor, advocate, and mother writes a blog called AUTISMLAND as well as AUTISM VOX: "Finding out your child has autism is like the end of a love affair and the start of a new, lifelong, really beautiful relationship." MOTHERS VOX, the nom-de-net of a mother, teacher, scholar and activist living in New York City, will read from her blog, AUTISM'S EDGES, on life, love, and learning at the edges of autism.

Autismland gets 2 awards (#615)

Well I really don't know what to say.

It has been a while---two months----since I stopped writing here.

We're still living well in Autismland: Most of Charlie's days (most of Charlie's moments) have been peaceful easy feeling and this blog has come to seem an online chronicle of how we got here, from there----from days of behavior squalls, anger, earthquakes. The days have become rather straightforward: Jim puts Charlie on the bus; Charlie has full school days working at his reading and counting and (recently) learning to type and (also recently) doing yoga in Adaptive P.E.; Charlie runs off the bus; he does ABA; we go for a walk to train, practice piano, a car trip to the store or the library or (as yesterday) Target; there's dinner, shower, looking at photos and listening to music together---all interlaced with small conversations about shapes, old toys (Farm Families in particular), therapists and their cars.

Today is a little different as Charlie has the day off for Good Friday; he is talking and playing games with his ABA therapist right now. He has been working on saying "piano" clearly (he tends to slur the first two vowels together) and I just heard him say it: "Piano." He makes "special guest appearances" regularly at Autism Vox---you can find some of them if you click on the Teaching Strategies page or go to the Charlisms category.

I'm making a "special guest appearance" here as, in addition to all the good things Charlie has been doing, I've something to write about: Autismland has won 2 blog awards. Back in early March, Dick at The Life That Chose Me awarded me a Thinking Blogger Award. The award came right at the time that I had stopped posting at Autismland and I have been meaning to name 5 other bloggers who make me think---and they are:

1. Whitterer on Autism. Ex-pat McEwen is raising three children (including 2 boys with autism) in Silicon Valley and writes of madcap moments in every corner of the house and sometimes "outside"---at the garden store---with some furry creatures----with occasional mentions of her own childhood memories in the UK, a few dental adventures, and wry wisdom.
2. Life in the New Republic. Lisa-Jedi's son has Asperger's and is learning Japanese, is mainstreamed in school, just got braces, knows his way with the computer----while he and Charlie might seem very different as far as their skills, Lisa and I note more similarities than differences in our kids, wherever they are on the autism spectrum.
3. Thanks to my "blog mentor," Hsien Hsien Lei, I discovered Science Blogs and now check many of these regularly. I have not studied science since my first year of college: Understanding genetics, neuroscience, cognitive science, mathematics, and a lot more is not easy for this autism mother/literary critic/classics professor: As ever, my efforts to do my best by Charlie by learning about autism have impelled me to expand my horizons. (Once upon a long time ago, I did want to become a medical doctor.......)
4. Eating With Your Anorexic. Laura Collins is a mom-activist who sees to dispel the myths associated with anorexia, bulimia, and other eating disorders. ED's are brain disorders and Laura writes with spirit and passion about many issues that are familiar to parents of autistic children: genetics, treatment, dealing with doctors, "cause," and more. Back in December, Laura noted that Autism Vox is "a blog that isn't about eating disorders but you wish it was."
5. Autism's Edges. Mothers Vox writes about life, love, and learning with her daughter, Sweet M, in posts that fuse cultural critique, M's artwork and words, and reflections on "the diagnosis." On April 19th at 8 p.m. at The Old Stone House at Fifth Avenue between 3rd and 4th Streets, MothersVox and I will be reading together for Brooklyn Reading Works.

I also must mention Processing in Parts, "an autistic perspective on life, rights, happiness, employment, and other aspects of existence" by Zilari; she has taken an "indefinite hiatus" from Processing in Parts and has left it as an archive----and I thank her. Zilari's observation on language, sensory processing, disability rights, and her own memories growing up autistic have taught me much.

And, this morning I found out that Autismland was named one of the Mother's Day Central Top 100 Mom Blogs in the "health conditions" category.

And, as of yesterday, visitors to Autismland number over 100,000.

Wow.

Thanks for reading! The story continues, and my account of it is now wound into the more topically-oriented posts of Autism Vox----thanks for walking with us on this Autismland journey.

The Story of Autismland (#614)

About two weeks ago---the day a winter storm coated the roads in ice and slush---my computer screen froze in the midst of loading my homepage. I tapped several combinations of keys to no avail---the keyboard seemed frozen, too---sighed, turned off the machine, waited a minute, and pushed the on/off button again. There was a slight metallic noise and the front light came on, and dimly glowed instead of its usual animated flashing. The screen was black, and blank.

I tried to turn the laptop on and off several more times, then shut it and put it back in its case, and dug out the Support and Service number for Apple.

Since Charlie and I both had a snow day I called Apple while he slept in. I followed instructions to insert the backup CD; I looked at a very black screen. "Let me see, there are some Apple stores in your zipcode range if you'd like to take it to the Genius Bar........" said the voice of Tech Support.

I closed the laptop and cut to the quick---something I have learned to do from these past years in Autismland, for worse or for better: Do what has to be done now. Don't even look at anyone who's looking at you, and Charlie, and get yourselves out of there right now......... "I'd like to send it in, if that's all right," I said.

"Just a moment while I look something up.........Be sure to back up all your files." I heard Charlie talking. I told Tech Support that, as I could not even turn on the computer, I could not do that.

It took an extra day for the DHL box to arrive, due to the wintry conditions. On Monday morning, I handed the box over to the delivery man. I felt fortunate: My parents had bought Charlie a small white laptop over a year ago, and so I spent some days typing on Charlie's computer and admiring the JigZone puzzles that appeared whenever I went to the homepage. I had put a number of photos from the past several years on this computer for Charlie; together, he and I watched a photo slideshow: Charlie on Jim's shoulders by the railroad bridge in St. Paul. Me in what was once my favorite dress and smiling (I am actually holding a week-old Charlie in the photo, which only shows my face). Charlie at the beach as a 4 year old, a 5 year old with Jim's best friend Mike, a 6 year old on Jim's back, a 7 year old swimming on his own, an 8 year old holding on tightly to his boogie board, a 9 year old catching the crest of a wave. Birthday parties at the pool, holiday parties in his classrooms, bike rides galore in our old neighborhood. Walks in New York and Hoboken and rides home on the train. Watering the lawn, standing at the top of the slide, carrying the shopping basket. Barney, Goodnight Moon, the blue blanket. The faces of therapists and teachers present and past, walking hand in hand with my parents, Thanksgiving with Grandma and Grandpa and aunts and cousins. Charlie and Jim. Waiting for the school bus. ---- And all to the tune of Jimi Hendrix, Desmond Dekker, and the Beatles. (Note to Mom-NOS: We just got Rubber Soul and after "You Won't See Me," Charlie was listening.)

What good times; what a good life it is, every day with Charlie.

It has been a great, great thing to share Charlie's and our every day with you, from when I first signed onto Blogger back in June of 2005.

I began to write about Charlie online back then somewhat out of desperation. Charlie---who had done the full panoply of early intervention, intensive ABA, some biomedical treatments, speech therapy and OT etc., etc.---was not doing well at all. In writing about him online, I hoped that I might represent what Charlie did and who Charlie was---who he is---as honestly as I could, even when it was a terrible day. In the summer of 2005, terrible moments were happening regularly. Charlie had summer school from 8.30 - 12.30pm and, after getting another report of another tough day, Charlie and I would walk back to our old house and shut the door and try to get on with the rest of the day. After another mother said to me "I really feel sorry for you and your situation. I just had to say that," and turned away---after the principal called me and demanded you must pick him up right now, he cannot be in the school like this---I felt (rightly or wrongly; it is what I felt) that what was being communicated was, We don't want to have to see this. We don't want to have to see this child suffer and bruise his own forehead. We feel terrible for you, but we do not need to see this.

After long conversations with Jim, I decided to post photos of Charlie online because I wanted to show that, terrible moments and all, here we were, with nothing to hide. Charlie was struggling (we were all struggling), but that did not mean that we had to become invisible.

And I wrote about Charlie, every day, and my blog about him became an unintended chronicle of our attempts to find the right school for Charlie. Not to cure him, not to recover him from autism, not to see him mainstreamed. Charlie's days at his public school in our old town became more and more difficult, and on November 8, 2005 Jim and I took him out of his public school classroom for what turned out to be forever. My mother flew out from California to stay with him while we were at work and Charlie was homeschooled by our ABA therapists. Many meetings and phone calls (you can imagine the tone) with the school district followed.

In early December, Charlie was admitted into a small private autism school and slowly, slowly, things turned around. When the school closed forever in June of 2006, we moved into the basement of my in-laws' house and---slowly, slowly again---settled into a new routine; a new life. In July of 2006, I felt that---with this, hopefully, final, move---it was time to stop writing every day about Charlie and to focus on the book I had always planned to write. I had started to write another autism blog, Autism Vox. I thought I would post about Charlie occasionally every week, add a special photo---but within one week, I was back to posting every day, as I realized that the story of Autismland was not quite over.

Fall came, Charlie went back to school, I went back to work teaching Latin and Greek to college students, Jim threw himself into organizing the October 27th autism and advocacy conference, Witness and Hope. The conference was a great day, and all the more so because Charlie was doing so good, at home, at school, and everywhere.

Charlie is doing good. He goes everywhere with us, and so is seen not only by the residents of our town in New Jersey, but also in Manhattan, all over New Jersey, in Philadelphia, at basketball games and movie theatres and wherever we might wish to go---wherever he might wish to go. When he and I go for walks, sometimes he walks in front and shows me the way: I do not have to hold his hand. Charlie is coming into his own, if he has not already.

And so I think it is time for me to step aside and leave the telling of Charlie's life to Charlie himself.

I will still be writing regularly on Autism Vox and Charlie will be mentioned frequently there. But this daily account of his life, of our life, is going to stop here: Autismland will be the chronicle of a particular period in Charlie's and our lives. I will be forever grateful that I was given the chance to tell you so much about him and our lives for these several months; your reading, your words, your support has sustained us through some difficult moments and has helped bring us to this new stage, this next phase, of life with Charlie. Everything I have written here on Autismland will stay as it is on the web, and I will be doing some organizing and reorganizing. And writing my book.

I feel wrenched to say good-bye to writing here, but I think that---based on what Charlie has been telling me, not always in words but simply by his determined requests for what he really wants, his understanding that he can play in the front yard but not leave it, his peaceful easy-feeling demeanor----it is time for Charlie to do the talking about Charlie.

To my surprise, a box with my laptop in it was waiting for me on the table when I came home from work on Wednesday. When I took out the computer, something was very different. There was the same scratch on the bottom, but the keyboard was shiney, the monitor bright and unstreaked. I turned on the machine: Welcome to your new Mac OX system. When I got through all the start-up screens, I discovered that all of my files had been erased, as a new system had been installed. I had expected this. Knowing that most of the photos were those I have been posting online, that many of the originals of the files were attached to emails, and that anything related to my job was also on the computer in my office, I knew I had little to lose.

Except for the rough draft of the proposal for my book that I had been working on. It is completely gone. "It's in your head," Jim reassured me as I had said to him about his tapes.

And I hope to be able to show to you, sooner than later, that it indeed is in my head and coming, too, straight from the heart.

Thank you for more than I can say, in 100, 614, 1000 posts. Thanks for joining us on this journey, altogether in Autismland.

Thank you.

One Day At a Time (#611)

When one parent of autistic child meets another parent of an autistic child, there is an instant bond. You and the other parent may have very different, and even opposing, views on things---on what treatments work best (ABA? Floortime? biomedical?) and on what the cause of autism is (genes? vaccines?), and maybe if you sit down and start talking about these things, you will start to disagree, maybe even to argue. But that feeling of shared experience---of having walked a road different from what you may have been expecting---of knowing you do not have to explain what "sensory needs" are or what "apraxia" is, or why it is not easy just to "run to the grocery store"---persists. You have been through something a little different and, while you do not necessarily want to go and tell the whole world about what this has been like, there is a sense of relief to be able to talk to someone who knows the language of Autismland.

"My child does too."

That phrase has come to mean more to me than almost any other. I have heard it while opening my mouth wide and leaning back in the dentist chair (making it a little difficult to say a fast "really?"). I have heard it while standing in line with another new faculty member at the college where I teach; we were waiting to get our ID cards and the subject of "do you have children?" had come up. I heard it last summer when I saw a little girl running down the sand, unaccompanied, and I called out to her mother. I heard it from two people I had chanced to sit down for breakfast with, a few years ago at an academic conference.

I rarely go to conferences anymore and "travel" means "travels with Charlie," to the beach, to see my family in California. It was when Charlie was much younger---just diagnosed---that I went regularly to support groups for parents of autistic children and made elaborate childcare arrangements to attend workshops about the latest new treatment or therapy or technique as well as lectures about the most recent developments in research about autism. And while I came away from these with folders of Powerpoint handouts, lists of books and websites, and pages of scrawled notes, what meant the most to me---what I hurried to talk to Jim about---was what I had talked about with other parents, whose emails I had been careful to write down and save.

Cyberspace exchanges have indeed become the main way that I have been able to stay in touch, and feel community, with other parents of autistic children. I exchange emails with other parents of autistic children throughout the day, and check blogs by parents and by autistic writers daily. Sure I would like very much to sit down in a café with a good cup of coffee and have a real, face to face, talk with another parent. I would like to have a conversation, make eye contact, share some laughs and pretend not to notice a tear (his or hers, or mine), part with a grasp of the hand or an embrace of fellowship. Maybe I will someday; as it is, I feel very lucky to be able to sit in my office at Saint Peter's College in Jersey City directly across from lower Manhattan (which I could see from my window, but there is a dormitory inbetween). I feel grateful to know that, while Charlie needs me to be home to attend to those routine parts of his day---piano practice, dinner, just sitting together, bedtime---he does not need me with him every single moment of the day. He likes school; he likes to spend time with my parents when they visit from California.

And why should he not? Charlie will be ten in a few months, and how I used to fear this. Ten years old------the big one-zero----the double digits-----adolescence, adulthood, the end of school, are just around the corner......... So I thought, thinking catastrophically (as some parents of autistic children have the tendency to do).

But a funny thing happened on the way to Charlie becoming ten. Maybe it is not exactly funny, but I do have to laugh at myself, so full of fears about tomorrow, about "what if Charlie never....." and about "what will we do when.....," and about other worries that constantly bobbed about in my mind. Sometime in the past two years---maybe in the past couple of months----the fears and worries started to fade and even to disappear. Sometime in the past two years, I started not only to embrace but to live the oft-stated mantra of "one day at a time."

I have been writing about Charlie in my journal since before he was born; I should rather call it "my journals," as I have a box of a dozen or so notebooks now filled with the facts of Charlie's life. Many of these facts I have also written about publicly since June of 2005, when I started writing about Charlie online on My Son Has Autism. From June 2005 to today, February 21, 2007, has been an interesting time in my life and, in my view, in Charlie's, as these months have been the period of his having serious troubles at school, of us removing him from school, and of the search for a new school; of us moving into my in-laws' basement, as the school district in their town had (we then hoped) the right kind of autism program for Charlie; of Charlie settling into his new school and, if I may so, a new phase in his young life.

I have no idea what the next phase (not the right word, perhaps----I am not sure if Charlie sees it this way, but that is my mother's perspective) will hold. I have had glimpses from meeting---mostly online, sometimes in person---autistic adults: Kassiane of The Rett Devil's Rants. Zilari of Processing in Parts. Laurentius Rex of in regione caecorum rex est luscus . Amanda Baggs of Ballastexistenz. Autism Diva on Autism Diva. Joe on NTs Are Weird. And many others.

When the parent of an autistic child meets an autistic adult---when this mother of an autistic son meets an autistic adult----she has an awful lot of questions and (in my case) she sees that it is indeed she herself who has started a new phase of her journey. And the good thing is, thanks to everyone she has so far met---autistic persons, children, adults, teenages; teachers, therapists, doctors, nurses; parents of autistic children---she has a map (unfinished at the edges) to help her find her way on this next stage.

Meanwhile, Charlie has already begun a journey all his own.

Hot Topics in Autismland (#585)

As much as I was excited to start writing another autism blog back in April, I had a few hesitations, namely, what more did I have to say about autism than to record the stuff of our days---tough moments, triumphs, random musings in watching Charlie grow up? Moreover, I was not at all sure how I felt about talking about any number of autism-related issues of a political and "controversial" nature.

Like mercury and thimerasol. Like the MMR and vaccines. Like whether or not there is an epidemic of autism. Like the Combating Autism Act. Like prenatal genetic testing and eugenic abortion. Like the use of electroshock as an "aversive." Like physical abuse. Like the stabbing death of 15-year-old James Alenson by 16-year-old James Odgren.

When you are an autism parent, the personal just is the political. From the time that Charlie was diagnosed, any mention of "autism," be it on a brochure from a therapy clinic, a passing reference in the newspaper, struck me right in the gut, or rather, the heart. This is about Charlie, I said to myself. This is all part of it.

But it seemed like so much and my mind, and my hands, and every waking and sleeping moment was all about teaching, all about taking care, of Charlie. I know some mothers spend endless hours tracking down the latest research on thimerasol and the brain (as Portia Iversen writes of herself in her book Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism ), but---especially when Charlie was younger---just tracking down a box of Things That Go Together flashcards or Charlie's stuffed dog seemed like plenty---like quite enough.

When I did consider the likes of the above "autism issues," it was always through the lens of my personal experience, that is, always through the lens of Charlie and of being Charlie's mother. MMR? Charlie had not had a reaction; Charlie's development was already "delayed." Epidemic? I was certainly seeing more autistic children but, prior to Charlie's diagnosis, I knew nothing about autism. Abortion? I tried to write about this many posts ago (in Abortion & Autism: Two A Words (#122) and found myself approaching incoherence. Electroshock? What.......

Even education, the one issue that I intended to be the focus of AutismVox, had so many corners and angles---mainstreaming, training, LRE, FAPE, all the minutiae of IDEA, and I wanted to keep my eyes focused on my greatest concern, Charlie. Not being a scientist, not having a background in something like psychology or medicine or the law, in anything practical that could obviously applied to Charlie's educational needs, I preferred to keep my opinions (or the lack I had of them) to myself. I was surprised at how even a simple discussion about ABA---which has, through trial and error, proved the best method for teaching Charlie---could quickly escalate into a heated philosophical exchange about human nature and human rights that left me feeling raw and exposed.

But I never felt so raw and exposed as when the school nurse in the town we used to live in called to tell me Charlie had hit his head 20 times and she had applied ice.

I never felt so raw and exposed as I did in some of the meetings Jim and I attended with Charlie's teacher in the district, the case manager, and the consultant with his plans for "behavior management."

I never felt so raw and exposed as when we took Charlie out of his classroom in that school district in November 2005. One of the schools he used to attend was not five minutes from our old house: What were we doing? Where would Charlie go to school? Why had we left our jobs in the Midwest and come back here to New Jersey? What was going to happen?

I suppose you could say, after all that, I felt like I had not too much left to lose. I don't mean regarding Charlie who, once he started to attend a small, private, ABA autism school in December 2005, just started to do well (with numerous bumps and setbacks, including the school closing---but these were tremors by comparison). After all that, I did feel I had a few things to say about autism education and I thought I might as well see how long I could last writing about them more publicly, and, hopefully, learn from others. I remember clearly how alone Jim and I felt that day we took Charlie out of his old public school classroom; there seemed no place for Charlie----there was no placement for Charlie---and we were back to wandering.

The more I wrote on Autism Vox, the more I felt myself drawn to talk all those autism issues---the hot topics I had been careful to offer "just my opinion, that's all," on. I read, thought, I fielded comments, I tried to see every side, I began to write about my oldest passion---books. Vox is the Latin word for "voice" and I heard, and keep hearing, so many voices via Autism Vox, and I am grateful for I have learned from them---from you---and wish only to keep learning.

Charlie is certainly a frequent guest on Autism Vox, where this blog is identified as "Charlie's blog" and that is what it has become, a blog of days lived, many quietly and filled listening to Charlie's words, and smiling at small gains: Jim telling me "Got on the bus this morning like clockwork!" Charlie sitting serious in a swivel chair in the living room while it was vacuumed (a noise that has been known to irk him). Charlie running out to the driveway to greet his ABA therapist and, when the therapist stepped into the bathroom, going to look for him in there. Charlie eating his brown noodles very nicely with a fork. Charlie hearing me mention that a former therapist had emailed me and calling out "Stella! Tara! Stella car, Stella baby!"

Those are the "Hot Topics in Autismland," are they not?

But if you really want to hear more about whether there is an epidemic of autism.........

Problem Solving, Truth Telling, and What I've Learned from Blogging (#449)

I went to have coffee with some of the parents in our school district last night. Most of their children were not yet five years old and I had to do some imagining back to recall when Charlie was not nearly my height and almost 80 pounds, and wearing the same-size shoes as me. In some areas like reading, Charlie and the younger children are working on similar programs.

In previous years, hearing that a child half the age of my own was reading paragraphs or just reading was difficult to hear, as was talk of scheduling playdates and of a child who could read any word you put in front of him or her. These children still had a full share of challenges, different and similar to Charlie's, but I never knew how to talk about the one thing about Charlie that I hated to mention, and yet felt I had to, if we were ever to solve it.

"My son is self-injurious. He head-bangs."

I was able to say those words last night. I have had a lot of practise, as I have written about this very behavior here on this blog. It is not an easy thing to write about Charlie's self-injurious behavior. I risk sensationalizing him at his worst, of turning my account of Autismland here into a tearful account of one autism horror after another, every day. And yet, not to write about head-banging, screaming, hamburger-throwing, mouth-pinching, etc.: Not to write about these things would be an incomplete, and therefore dishonest, account of what Charlie does, of what our life with autism and our autistic son are.

So last night it was natural to say "Charlie's nine. Yes, he can talk---one and two word phrases unless we push him. He had a really tough time in the past year and a half---he head-bangs. It seems to be getting under control right now, with the school and at home." I did not go on, but thought to myself how we have been doing this in as non-intrusive a way as possible, by trying to understand why Charlie does this and to teach him strategies to address his anxiety before it balloons into Behavior. That is, we have tried to be as pro-active as possible, rather than rushing to react to a head-bang, a screech, a throwing of a dish.

Hence we have begun to teach Charlie to, on hearing an alarm go off, get out of the bed rather than having to be dragged out. As most people are not in the mood for learning on waking groggily at 7.45am, we have begun teaching Charlie to get out of bed at the sound of the alarm at other times of the day, as in the afternoon. Once he has learned to get out of the bed on his own at the alarm going off, the thought is to transfer this new skill to the early morning when Charlie is actually waking up, and thereby forestall the bumpy Monday morning we started this week with.

A good pro-active plan; Charlie thought it was very funny to see his ABA therapists lying "asleep" on his bed and getting up as the alarm went off; it was even more funny to him to lie on his own bed and then, at the appropriate moment, get up.

This morning, Charlie woke up at 5.30am and came into our room, snuggled under the covers, and went back to sleep. When I set off the alarm inches from his pillow at 7.45am, he did not budge at all, much less bat an eyelash. I reset the alarm with the same results: A sound-asleep Charlie at 8am. Too much talk and too many physical efforts to get Charlie moving have been, I have realized, kindling for tantrums especially when Charlie is coming to consciousness from a deep sleep. I managed to say only one phrase---"Time to get up"----to a half-sleep walking boy who stumbled out to grab the "g'een squishy ball" on the floor, pulls on clothes and socks and a hooded sweatshirt.

We are always trying to promote language and talking in Charlie, but some moments call for silence, and (as I have learned), early morning chit-chat does not appeal to him: It is, it seems, just too much for his awakening brain to process a lot of language, and so Charlie and I stood on the sidewalk, not talking, just waiting.

The day turned out good at school, with Charlie more energetic than usual, and at home, with a full ABA session and a hilly bike ride before dinner. I hovered over and beside him as he ate rice and shrimp for dinner; then it was "hot showah! b'ush teeth! c'oses on, pants on, turn on pic-turrs. All done, yes, bed time"---before 9pm.

The alarm is out for tomorrow morning, and I hope we can be ready for what tomorrow brings, whether snarls or smiles, whether problems or progress. From writing here, I have been learning how to talk about it all, to tell nothing but the truth about Charlie.

Every day.

The Return of Autismland (#383)

Last Monday, the 3rd of July, I wrote that, after, writing daily about Charlie on Autismland for just over a year, I was going to stop posting everyday.

I'm afraid I've been something of a hypocrite. Since making my announcement, I have posted pretty much....... every day. Some days I did just put up a photo, with minimal commentary. I have started my book proposal, been thinking about the ancient Greek word kakos ("bad, evil, ugly, low-born") in Sophocles, started to organize my desk, caught up on email, got Charlie to let me brush all of his teeth in preparation for Tuesday's dentist visit, posted on Autism Vox. On Thursday, I posted what I consider to be more of an Autismland-type post on Autism Vox, The [autistic] Child is father of the [autistic] Man.

But then:

Early last week, the power adaptor to my laptop fried. It was thunder and lightning outside but I had never had a problem before----except that we are now living in my father-in-law's house and he does not have circuit breakers installed all over the place, and literal sparks flew. I have to plug in my laptop because the battery died a long time ago and I have been resisting getting a new one, as I have been saving for a new laptop----the current one having started to crash regularly (often in the midst of posting) and lacking the 5 key.

And if that was not a sign of "Autismland needs to be Autism Every Day," there was Jim saying to me, mid-week: "I miss it, and I live with Cholly!"

So, here I am. Posting every day about the boring, mundane, "today Charlie woke up at 4am and put on his swimsuit and then lay down diagonally in our bed so there was no room for anyone," "today Charlie and Jim went on one of their usual hour-plus bike rides," "today Charlie pushed the cart at Target," "today Charlie was looking at the notes in his music book and then played the right key during his piano lesson," "today Charlie hit his head on the stair rail and the wall maybe because he missed seeing the garage door open when Dad and Grandpa came back from the hospital to see Grandma because the nurse had the TV set on to American's Funniest Home Videos with the volume up," "today Charlie calmed down in two minutes," "today we went on a post-shower ride past some of Jim's old haunts," "today was another great Autismland adventure." About the usual of Autism Every Day.

If I had not already decided to call my book Autismland, I think I would have to steal that title---Autism Every Day--- from a certain video.

My very brief hiatus from blogging every day at Autismland has reinforced in me the reason why I blog---why I need to blog---every day about Charlie, about autism. Somehow, sitting down at the end of the day and writing about the simple facts of our lives---of Charlie's life---gives me hope. Sometimes nothing much happens, sometimes tough things happen, and all I can do is to bear witness to the truth of the Autism Reality Show Starring Charlie. Sometimes all I can think about is how beautiful, precious, and happy my Charlie boy---my autistic son---my disabled child---my shining light of my life----is, just like a little girl named Katherine "Katie" McCarron, a little girl who is no longer with us and who I think about a lot.

I think about her every day.

I think about how we can, we should, never lose sight of hope and joy and of how we can best bear witness to the hope and joy children like Katie and Charlie and so many more bring to this world.

Every day.

I'll be back tomorrow.

The Charlie-book (#376)

I started blogging back in June of 2005 with the thought that writing publicly about Charlie on the internet would help me to write a book about autism, about Charlie. I hoped for some feedback from readers, for support and "I know what you're talking about" and "I see what you mean though our experience has not been quite like that" and "what do you think about X." I had been on several email discussion lists about autism since the spring of 1999 when it became clear that "something was wrong" with Charlie; indeed, my discovery of the resources of the internet occurred simultaneously with Jim's and my search to find out about how we could best help him.

I have been wanting to write "the Charlie-book" for many years. Like many parents and family members of autistic children---like more and more autistic individuals----I felt a pressing need to tell and share the tremendous, painful, sometimes terrifying, always worth it, often exhausting yet exhilarating experiences that characterize a typical day in Autismland. On the Autism Reality Show.

As the years passed from that hot, awful July day in Minnesota when we received Charlie's official autism diagnosis, certain things became apparent as I thought about what my book would be. First, the number of autism books---especially memoirs by parents---kept increasing, and continues too, and I could only wonder, what is it about Charlie and our experience that is unique enough that anyone would want to buy a book about it?

Second, so many of the books that one heard the most about had one of two angles: They were "how to" books (usually written by professionals, sometimes by relatives of autistic children) that described some method or treatment of therapy that had remarkable and revolutionary results in helping a child; or they were parent narratives of "how I recovered my child from autism."

And Charlie, far from "recovering," was struggling. For the past four years, every day was a struggle for Charlie and for us. We kept wondering what behavior---what more and more violent, aggressive, and self-injurious behaviors---we would witness? how much longer would Charlie not be able to read? would "therapy"---speech or OT or ABA or VB or PT or so many other types---ever end? would we just keep reading those same goals on Charlie's IEP and note the long lines of 3's on his progress report, signifying "minimal progress"?

I mean, who wants to read about an autistic kid who hits his head?

People feel bad to hear about it. They say "I am so sorry." They don't say anything. They look the other way and pretend they never saw it happen.

These people have never seen what a lovely boy my autistic son Charlie is, as if those terrible behaviors that Charlie did (still does) disqualify his story and him from being readable, or interesting, or best-selling, unlike an account of a "mildly" autistic child who had pretty much "recovered" from autism. And that desire---rather desperate, as I look back---to say "Charlie is the greatest of kids, sure he struggles, all of our kids all across the spectrum struggle"---this desire impelled me even more to write about Charlie, and publicly, on the internet. Too often, we parents tend to emphasize the tough things our kids go through, and to talk more about the negative than the positive. And some days, it does seem that more or only the negative happens.

Call me overly upbeat, but I know that something good happens everyday for Charlie. Because every day with Charlie is good---no matter what happens---because it was a day with Charlie, with me being Charlie's mother.