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.

7 Responses to “One Day At a Time (#611)”
  1. Hilda says:

    Thanks, Kristina. I agree about the instant bond – reminds me of when I first saw your blogs, and neglected everything to read all the archives. It’s the kinship feeling – here are people who understand. Same thing my Ds12 feels when he talks to other kids with Asperger’s; he doesn’t need to be all autism all the time, but he does need to know that there are people who share his experience in some way. He loves hearing how Charlie is doing too, reading over my shoulders sometimes when I read your blogs. He feels a kinship with Charlie.

  2. diane says:

    I am thankful to you for sharing your and Charlie’s experiences publicly. My son is 6 and going through some difficulties. Regression? Anyway, knowing that you basically did “early intervention” with Charlie past the “prime” years gives me hope. I don’t blog ….because of fear? I am not a writer. I feel sometimes I should not leave a comment and that it is taken wrongly, but I am grateful for the bloggers who are brave like you. Thank you. Sincerely, diane

  3. mcewen says:

    You, me and them, likewise dearie. Cheers

  4. gretchen says:

    I agree with everything you’ve said here Kristina. The internet has been my lifeline as an autism mom. And I sincerely hope that we can have that face to face coffee someday- maybe even a backwards hug!

  5. Aspie Dad says:

    Thanks, Kristina,
    That connection is unmistakable and undeniable. Whether as parent or as part of a multi-generational on or near the ‘spectrum’, …, thing.
    It really is nourishing to connect with other people, as disorienting as that can sometimes be. 🙂
    And if you’re ever in Las Vegas…

  6. Aspie Dad says:

    Thanks, Kristina,
    That connection is unmistakable and undeniable. Whether as parent or as part of a multi-generational on or near the ‘spectrum’, …, thing.
    It really is nourishing to connect with other people, as disorienting as that can sometimes be. 🙂
    And if you’re ever in Las Vegas…

  7. Tim in Miami says:

    Kristina, sometimes I read what you write with a certain amount of awe. You are often able to articulate things that I feel but could never express in the way that you do.

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