What If

Charlie on an afternoon walk in a brisk wind  What if—as in "what if Charlie were not……..Charlie?"

On the autism spectrum. Able to talk a little, but not enough at all. At a separate school for autistic students after some eight years in the public schools, in effect (if you want to look at it this way) "downgraded from 'educably mentally retarded' to 'trainably mentally retarded' pretty much after he hit early puberty, but it was just the behavior doing the talking," as the brother and carer of 50-something James writes in an essay, "Thicker than Water."

What if.

Charlie were in the 7th grade in middle school, taking a packed schedule (and either suffering his mother's request that he take Latin or Chinese, or rebelling and going for Italian), sparring with his dad about American history and current events and how can anyone root for the Pirates? (Jim's their long-time fan), playing a couple of sports (I'm imagining that Charlie would be just as athletic as he is and a prime recruit to shoot hoops and be a member of the defensive line), also suffering piano lessons and itching for something more like an electric bass. Able now to fly by himself to see his grandparents in California. Able to talk back, argue, and say "it's not fair!!!!!!" to his parents who seem more and more to be a pair of nutty professors who've made him spend way too much of his childhood roaming around different college campuses and their libraries and eating weird ethnic cuisines.

What if.

Charlie were not a boy who minded very much if his mother drove right instead of left on a Tuesday night. And even if he did mind, he would tell her "Mom, why are we going this way, I wanted to go the other way, don't you get it?", instead of flinging himself on the windows and plastic parts of the white car, and crying all the way home and for the next half-hour sitting in the car and on a walk in a cold wind.

You don't have to believe me, but I really never think "what if." 

I'm sure many parents in our situation may well do think about such, and more than a few, hoping ever that "what if" can be "what is," seek treatments and therapies and ways to "heal," "make better," even "cure" their child. They refuse to "accept" her or him "as she or he is," never wavering from the search to make "what if" into "what is." A parent like myself who "simply" and "merely" "accepts" her child as he is, is termed "in denial."

But for me to keep chasing after some hypothetical idea, some elusive image, of what I might imagine Charlie should be, would (in my book) be the deepest denial of all. It would be denial of the child who stands before me, who's here, and needs me to help him right now in the moment, whether it be in the white car or in the bathroom. As Jim once pointed out to me, I'm not one for engaging in arguments and getting all wound up in ideological or philosophical disputes about ideas. Once upon a time (we're talking college, people! 20 years plus ago), I thought I was maybe like that, but my temperament is (simply, merely) drawn to focus on the here and now, on what's in front of me. I'm not a speculator. I'm a doer. I like to put things together, figure out the puzzle, make things, clean up messes.

Last night, rather than just try to "forget about" our latest hair-raising moment, I thought it important for Charlie to reflect on what had happened. So I wrote out "I got scared," in regard to how his fight-or-flight reaction kicked in when I made that right turn, and Charlie wrote those words too. "We're going to practice changing directions," I added as he handed the pen back to me. Charlie looked seriously at some spot in front of him.

Ten minutes later, I was in the living room, addressing an envelope to Charlie's Child Study Team (routine matter, no fireworks of late). Charlie was in the kitchen; I could hear the refrigerator or freezer door opening and shutting. I heard footsteps and, when I turned around, Charlie standing tall in the doorframe, asking me:

"Mom, I need help." 

Rather than standing in the kitchen and saying "I need help I need help" over and over (as he's been doing even a few weeks ago), Charlie had come to find me, and then asked. And there he was.

That's the meaning of life right there, in my book (on my blog). 

Guess that's why I am indeed no philosopher.

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Comments
5 Responses to “What If”
  1. Elise says:

    I never think of “what if” either. It does no good and prevents you from working on the issue of the moment. Also “what if” is not about your child I think its about the parent who feels sorry for themselves.
    Kudos to Charlie being able to ask for help. Great job!

  2. S says:

    ITA farmwifetwo.
    Seeking special education, behavioral training, and most other forms of “treatment” for your child is basic parenting, not “refusing to accept reality”.
    More than that, if there was a *proven and safe* remedy that would at least partially alleviate some (not even all) of the major issues/symptoms, most parents of children with said issues would accept it for their children. This again is parenting, not denial and not hate of the child.
    The debate between “accept/accomodate” vs. “treat / find causes” is too often framed as an “either this or that” situation, rather than seeing that both approaches are needed.
    And Kristina, Though I usually agree with most of what you write, today I don’t. As a humanities scholar, I am sure you know: if you don’t examine your philosophies, they don’t cease to exist. They don’t go away, or become irrelevant, and you don’t magically become framework-free. It just means that you operate without acknowledging them.

  3. a parent says:

    I think it’s natural for a parent to have “what if” thoughts a lot when they’re coming to terms with a diagnosis. Over the years I think it’s natural for these to fade to day dreams and then disappear altogether for the most part. At least that’s the path that I’ve been on, not by some conscious decision, just because life happens.
    Perhaps there are bitter, whinning people who never come to terms with a diagnosis and who never really connect with their child. It’s hard to believe they can make it through day-to-day tasks.

  4. autismvox says:

    Acceptance doesn’t mean “doing nothing” or always doing the same thing and certainly it means educating and teaching. Apologies if that was not clear.
    @S, Apologies also for being unclear. I do have a “philosophy”–don’t we all—though it’s not too well articulated. I think I’ve kept up with blogging for all these years because it’s precisely a way for me to examine things and lead that “examined life.” But I am no philosopher, in a most academic sense, just a dabbler who likes reading Plato and the rest, and I am not the most systematic of thinkers.
    Serenity prayer is a sort of unspoken mantra in our household.

  5. Regina says:

    “The debate between “accept/accomodate” vs. “treat / find causes” is too often framed as an “either this or that” situation, rather than seeing that both approaches are needed.”
    “I don’t think acceptance and teaching skills are mutually exclusive”
    ————–
    Interesting. In a different context, where something was posed as an either/or, someone brought up – “do both”. Which is more doable than not, and possibly more representative of reality which often has more than 2 options.
    I read recently that our neurology steers us in framing that black/white, good guy/bad guy, home team/visitor dichotomous direction, but that’s a tendency, not an overriding truth, or at least IMO, and has a certain dependency on perspective and specifics.
    As for “what ifs”. Well, everyone has those for lots of things, not restricted to children. I’ve had enough and still do that I’m not going to judge someone if s/he has one or even some of those moments – it’s not always volitional. A lot of my “what ifs” center around – “‘what if’ we try that in a little different way tomorrow?” And despite MY “what ifs”, sometimes my daughter shows me all on her own something that throws me on my heels and points out that reality outside of the limits of my imagination can be pretty okay as well.
    “Rather than standing in the kitchen and saying “I need help I need help” over and over (as he’s been doing even a few weeks ago), Charlie had come to find me, and then asked. And there he was.”
    Well, there you go. (And nice, by the way – you go Charlie!)

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