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.
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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.)
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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.
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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.

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Comments
22 Responses to “The Story of Autismland (#614)”
  1. Ennis says:

    Wow. This is unexpected. I feel very sad, but must respect your need to move on. Good luck to you and Charlie!

  2. I have one but……. somehow I never got around to putting the proposal on it. (And I have been making thorough use of Google Docs.)
    Charlie is already making more of an appearance on Autism Vox, in a muted way.

  3. Steve says:

    How ironic that this “negative” change for all of your readers is due to such a “positive” change (over time) in your family’s life.
    Your blog was one of the first I found when I discovered this world of autism blogs; I’ve enjoyed it greatly since.
    I wish nothing but the best for your family.

  4. Kathy says:

    Oh.. And a big kiss for your big boy Charlie!
    The world is his oyster!!

  5. Clay says:

    “We just got Rubber Soul and after “You Won’t See Me,” Charlie was listening.”
    Love that Beatles song. I prefer Revolver over Rubber Soul though.
    “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.”
    I have received the “please come and get your child now” phone calls quite a few times. Now a days it’s only because she won’t stop screaming. In the past it was violent behavior (i.e. throwing things, climbing on things all over the room, screaming, and self injurous behavior).
    In one way I could sympathize with the school. But mostly what I felt like telling them was, “look, she’s in your special education class. This is your responsibility, so deal with it.”
    “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.”
    We’re not there yet with Edith. Parking lots and any walks near the street are dangerous. Edith is prone to dash right out into the road, and she is very fast. I can still catch her, but not right away.
    We have to pretty much either hold her hand, which she hates and tries to wiggle out of, or try and maintain the position of being a barrier, sheilding her from the street, or the area in the parking lot where cars are moving.
    Was Charlie ever like that?
    When I first started desperately trying to find out what autism was, after Edith had been diagnosed, your blog was the second one I found. I came to “My Son Has Autism” from the blog “Adventures In Autism”. While I still follow her blog, it rarely contains the type of personal accounts like yours does. It is mostly about things like mercury in thermisal etc.
    I have really enjoyed following the life of Charlie, you and Jim. In fact, I have enjoyed it so much that I have read both blogs (“My Son Has Autism” & “Autism Land” in their entirety and have done my best to keep up with this one every day.
    Reading about Charlie and you and Jim has definitley been a help to me. While all autistic children aren’t alike, there are some common things that they share, and getting the perspectives of another parent and how they handled situations with their child is very meaningful and helpful.
    I’m going to miss hearing about Charlie, your family’s culture etc. but, I understand. I only hope this isn’t at all due to any of the objections to this blog from autistics like Amanda ballexistence, or Ms. Clark etc.
    While I can understand some of the points that they make, there is a lot about your blog that they don’t consider in their opinions about whether or not you should be writing about Charlie, and this whole “view from above” notion.
    I will, of course, be following your other blog “Autism Vox”. I’m in the process now of trying to read the whole thing and get caught up. I will relish the tidbits of info on Charlie that you post there.
    But it won’t be the same as following the day by day personal experiences your family shares.

  6. I have never told her to stop writing her blog, nor suggested she should. I don’t think you know what I have and have not considered, either, in forming my opinions.

  7. Jim and I have been in a constant conversation about my writing about our family and Charlie here. For instance, when we took Charlie out of his public school classroom in November 2005, we had a serious issue to think about, as far as what I was revealing online and the district knew about (the district knew about this blog: our case manager was a regular reader). I started the blog with the intent of using it as a way to start writing my book and now that I am definitely doing this, it has become harder and harder to keep up two blogs and take on the very different work of writing a book.
    The issues of what to reveal and what not have constantly arisen; I will note that, since we now live with my elderly in-laws, our family situation and home life are a little more complicated—-Charlie has proved himself an absolute winner in handling all this. My in-law have a lot of serious health concerns and Charlie has been very understanding. I can’t say enough about that.
    I think, because of the nature of blogging, it will be inevitable that Charlie will make an appearance or two on Autism Vox. And yes, he did use to run away from us, would not hold our hands, pushed past us. He has learned about the sidewalk and stopping mostly through Jim’s doing—-all those bike rides on the streets—I think this topic is the subject of a future post on Autism Vox…….

  8. Lisa/Jedi says:

    I also will miss my almost daily stops here for my Charlie fix 🙂 I have often wondered how you manage to write every day! Plus maintain AutismVox!! I’m very glad you & you family will still have a presence online…

  9. Karianna says:

    Thank you for your words, photos, and Charlie’s story. Thank you. Thank you.
    Best of luck with your book.

  10. Shannon says:

    Ooh, I will miss you! I have only been lurking for a few months, but I agree with MOM-NOS – visiting your blog is like talking to an old friend. I am glad you are still keeping up with Autism Vox, though.
    I am looking forward to the day when Charlie writes his own blog about his life. It will be on my Favorites list for sure.

  11. ljcblue says:

    Kristina,
    I, too, am looking forward to your book. I am certain that our paths will cross again, both in real life and in cyberspace.
    The best from our family to yours.
    Lisa

  12. brockton says:

    You’re a beautiful writer – I’ll be looking forward to your book.

  13. Marcie says:

    I’m sad to see this blog go, but I understand the need to move on. I’ll just have to check Autism Vox more often! I look forward to the book. You and Charlie are awesome.

  14. Morgan says:

    Thank you Kristina for sharing your journey through Autismland with the rest of us. Autism Vox will still be my daily “must read,” but I will miss the warmth and joy you bring to the telling of Charlie’s story. Best wishes.

  15. Oh Kristina, what an amazing blog friend, mother and person you are. Thank you for sharing your personal life and times with loveable Charlie. I understand and respect your decision, but will miss your wisdom and guidance. Of course I will keep up with AutismVox and the wonderful discussions that occur there. I haven’t been able to sit at the computer for a couple weeks, and can’t believe I missed saying goodbye here, but a definite hello to AutismVox. Peace dear friend!!!!

  16. chrisd says:

    I just got to “know you” but I totally understand. Best wishes. I will continue to come by and check periodically.
    My son with asperger’s is doing well but we have new things to tackle. You sound like you’ve done so much and so has Charlie.
    We never had ABA for him because his case was so mild. Wonder if it would have helped him. Will never know now–
    Take care-

  17. Kristina says:

    It was not easy to stop writing here and everything you’ve written is why—-in the past few days, mention of Charlie (dinner in a sushi restaurant with Jim, his difficulties to hold a pencil) have gotten wound into some Autism Vox entries. I miss writing here, there’s no question about it.
    Charlie has been really well. I’ve said that but it has just been the simple case. There are the usual moments of less-than-happiness, if I may put it that way. I’ve been realizing that he grew up a lot while I writing about him Autismland—-and I was able to learn how best to foster that growth, too.
    Please stay in touch! The adventure continues….

  18. Thanks so much, Kal—I have been writing about Charlie’s days on my other blog, Autism Vox—I was sad to stop writing here: It means a lot to hear from you.

  19. mothersvox says:

    Wow, what sad news for all of us — your fans!!! I will miss visiting in Autismland, but will hope to see you and Jim and Charlie on one or the otherside of the river. And will look forward to the Autismland book when its published!

  20. I’ve been offline for a while and didn’t get a chance to say it.
    Thank you so much for everything. You’ve been an inspiration to me. I’m glad we’ll get to hear a bit about Charlie in passing on the other blog.
    Take Care.

  21. kyra says:

    oh, kristina, how sad and how wonderful. both. your words and your stories about your life with charlie have been so moving, so important, for full of so much LIFE. thank god you made the decision not to be invisible, for those of us in the blogosphere and for those in your many neighborhoods. i will miss reading you. i wil miss hearing about charlie but i will have your book to look forward to and what a book it will be!

  22. Hello Kristina,
    :(:) You have made this blog not only inspirational but also informative …Its like a guide for everyone who want to know Autism, how can one deal with it, what makes things better, understanding kids and a lot more things….thank you very much for sharing your life experiences with us…and all the best for you new site…I will catch you on Autism Vox..
    Health Watch Center.
    http://www.selfhelpzone.com/

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