In medias res (#476)

Charlie was so excited about going to school this Monday morning that he put himself to bed on Sunday night at 9pm—-and then could not sleep until past midnight. I got him up just before 8am by my new, improved wake-up method, which is not an alarm clock but an album of nature sounds mixed with New Age-mellow melodies (including Pachelbel’s Canon, which makes me feel both calmed and deeply yearning, even when rushing around on a Monday morning). The bus came as Charlie was standing staring on the stairs but he crossed the grass smiling beneath his fleece sweatshirt hood and got right on.
Kitcheneats_1
A year ago, two and three years ago, I would have opened Charlie’s communication book on Monday afternoon and read about a slow start, a behavior or maybe two or three. Today, Charlie’s teacher emailed me in the middle of the morning to say that he was having a really good day and that he had even tried a cereal breakfast bar (one of those foods I have been trying to get him to eat for a few years, in a vain effort to vary his breakfast foods from one brand of frozen gluten-free waffles). Back home and off the bus, he carried in some groceries with Veronica, my in-laws’ live-in nurse, and me directing him, practiced piano, and hurried into the car for a meeting with his home ABA therapiy team. He kept himself focused doing the three jigsaws I had brought. His main therapist talked about how much talking she has been hearing. Charlie ate a fast and (for him) small dinner, lay on my bed, showed, lay on my bed, looked at photos and listened to music, lay on my bed and fell asleep.

Easy, this Autismland life?

Well………..

This is my 476th post on this blog. Many of you have been reading from over a year ago in June 2005 when I started writing online about Charlie on the first version of this blog, My Son Has Autism; I have “met” many others of you—sister and fellow travelers in Autismland—in the past few months, or weeks, or even just days ago.

A few days ago, I met, as in face-to-face shake-the-hand met, a parent. A parent of a just-diagnosed child. We talked about his child, about what his child does and does not do; about where else to seek information, from a nearby autism center to a medical clinic where many parents in New Jersey take their children to be evaluated, to websites. And as I listened to his details of a child so much younger than Charlie, and as I mentioned Autismland, I thought of just-diagnosed, of pre-diagnosed, Charlie—those plastic stacking cups he stacked and put away, he stacked and put away, he stacked and put away and that was all Charlie did. Of how his cheeks and torso were often red with rashes and how he smelled like yeast. Of how he never had real words but four distinct sounds—ma, da, oogi, mmmm—by his first birthday; of how by his second birthday, Charlie said one thing: da. How, then, did that toddler who didn’t really toddle—Charlie was a late walker, 15 months—-become the bike rider, happy school boy, chatty Charlie Fisher of today?

In medias res is Latin for “into the middle of things”; it is a phrase from the Roman poet Horace’s “Art of Poetry” (Ars Poetica). Horace advises the novice poet to start his epic poem not at the beginning of things but to jump straight into the heart of it all.

I would say, my writing online about Charlie indeed began in medias res: I began writing on My Son Has Autism in the summer of 2005 somewhat out of desperation. He was not doing well at all and he was getting bigger and more aggressive towards us and towards himself. In writing about Charlie online and so very publicly, my intent has been to represent what he does and who he is as honestly as I can, even when he had (as he still can) a terrible day. Writing online and daily about Charlie became a witness: Here is Charlie, here is a parent and her autistic son, and here are days of subliminal joy and here are some really awful things that happened. Then sometimes in the past month or two, I have been finding myself sitting down here at night and writing “it was a great day.” And, “it was a great day.” And, “Charlie had a great day.”

But Rome wasn’t built in a day……… In the next few days, I will include some chronology for the daily “autism reality show” I have been chronicling here. So when you read what happens in medias res, you might have something more of a sense of where Charlie, where Autismland, came from.

And why, while Charlie dashed downstairs for the bathroom with a hastily uttered “bahroom!”, his ABA home coordinator and I exchanged words, nods, and smiles: Charlie’s doing really well.


Charlie’s First Two Years

May 15, 1997. Charlie—8 lbs, 3 oz., 21 1/2 in.–is born in the evening in Town and Country, a suburb outside of St. Louis, Missouri, where Jim is a full professor at Saint Louis University.

Late May, 1998. We move to St. Paul, Minnesota, where I have a new job teaching Classics at the University of St. Thomas.

Fall of 1998. Charlie is in a daycare on the grounds of the University of St. Thomas and it becomes evident that he is “different” from the other children. Charlie does not talk and sometimes plays only with the CD player.

February and March of 1999. Charlie is evaluated by the St. Paul Public Schools and diagnosed with a “communication disorder.” Jim thinks it is autism. I deny it. (One day, a student says to me, “I’m sorry, but could you please come into class not crying, just for one day?”)

April of 1999. I, and then Jim, read Let Me Hear Your Voice: A Family’s Triumph Over Autism by Catherine Maurice. (I have stopped crying at the start of class and at other times, and Jim and I know: Charlie has autism.)

June 1999. Charlie starts the gluten-free casein-free diet. The rashes on his face and torso and that yeast/bread dough smell disappear.

July 22, 1999. After a two-day evaluation, Charlie is diagnosed with autism at the Child Development Center of the Minneapolis Children’s Hospital. He is also found to have celiac disease.

Next: Charlie’s Education Begins.

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Comments
6 Responses to “In medias res (#476)”
  1. sharon says:

    This is a good idea. People at the front line of new diagnosis often have little knowledge and understanding and what you described yesterday, hope. I know that applied to me when Duncan was 2 and I worked out that he was autistic.
    I sometimes wish I could send a message back to the woman I was a few years ago, and let her see what her son would become; I just wouldn’t have believed it was possible.

  2. Lisa/Jedi says:

    This looking back perspective is also really helpful when things are not going so well, as is happening now in B’s life. It’s good to remember that life’s up & downs can be more yo-yo-like than we remember, & that we’ve come through difficult times with our hearts & senses of humour intact before, & we can do it again…

  3. Christine says:

    Kristina, this was just such a good post for me to read on this particular day! I am SO glad that you write about your life with Charlie. Thank you, Thank you for sharing him with us. I am very honored to know you even if it is in this cyber-version of reality!

  4. MommyGuilt says:

    Kristina –
    I remember when I started reading your blog. SmallBoy had finally been dx with Asperger’s and I was looking for an outlet, and for others in autismland. YOU, and your posts about Charlie and your family, ALWAYS made me feel better, like I was not alone battling the big bad “A” word. It’s wonderful to be there to help people…and I think that’s what we’re ALL doing in our blog world. You help me, I help you, our children – our precious ones, help US!

  5. I’m honored to have all of you reading what I write—-I get more help than I can say from all of you.

  6. mom-nos says:

    By now I should no longer be surprised that when I think things, you type them. This phrase – “in medias res” – has been on my mind for weeks, as I’ve thought about the class I’m teaching (and the papers I’m reading), about my own writing, and about parenting in Autismland.

    And, as always, I am so thankful, so happy, so fortunate, to have begun in the middle of things with you.

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