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.

7 Responses to “What If”
  1. emma says:

    I don’t think “what if” either, and people don’t always believe me. It certainly isn’t denial.
    I like the idea of reflecting on what happened, Charlie seems ready for it.
    Coming to find you – excellent, “Mom I need help” more than excellent!

  2. farmwifetwo says:

    I find that those like yourself and Estee claim that “acceptance” is living with “what is” but as you just wrote “we are changing direction” tells me that the status quo is going to be changed. Therefore you don’t really accept what is. She does exactly the same “I accept Adam’s autism but we use an ACD and he’s taking piano and we’ve gone back to speech therapy” says… no I don’t really accept what is….
    Which makes you no different than I. You want more, want better. Would I like it if they were “normal”… what is “normal”. Normal in our house is an elder child that is independant. He has some minor LD’s that are being taught/gone around at school. Social and behavioural skills that are better now than most of his peers and still constantly worked on… That’s “cured”. The ability to do whatever you want, whenever you want to…. as long as it harms no one else. Did I give him a brain transplant?? No. What I did was ignore the Dev Ped’s “just write him off” attitude and I started teaching him to read, write, speak, behave etc etc. It’s called EDUCATION.
    His brother will probably never become fully independant. And the elder told me last week that he’d have his younger bro live with him when they became adults… not ready yet for those converations at the age of 10. But that hasn’t stopped me from teaching. Teaching the 3R’s, self-help, social and behavioural skills. No brain transplants…. independance.
    Does it mean I don’t love him? Does it mean I hate him because I should just accept the status quo and leave him to miss out on life??
    I’ve never, ever, ever blamed them. Never, ever, ever blamed the autism. Never, ever, ever said “what if”. I have no regrets… not a one… but that won’t stop me from teaching independance and hoping for the best and living with whatever happens… without complaint.

  3. lynne says:

    (longtime reader, infrequent commenter here)
    I don’t think acceptance and teaching skills are mutually exclusive, and that isn’t the message I got from this post at all. I think of Acceptance more along the lines of the ‘Serenity Prayer’:
    Grant me the courage to accept the things I cannot change,
    The courage to change the things I can
    And the wisdom to know the difference.
    I can’t make my G be a different, NT type person. I accept him for who he is and accept his autism is a part of him. But I also recognize that being autistic doesn’t mean he can’t learn or won’t develop and change over time. He just learns at a different pace, faster than his peers in some ways, slower in others. I accept him (and celebrate him) for who he is at this moment while planning how I’ll teach him the skills and coping mechanisms he’ll need to get through life, or brainstorming work-arounds for those issues where he may always have difficulty. I think that’s what any parent does, yes?

  4. gretchen says:

    I think “what if” a lot. But not about my autistic child. I wonder about my unhappy step-daughter (what if her parents hadn’t divorced? what if we hadn’t moved when she was 11?) as well as about my kindergartener (what if he doesn’t read as well as the other kids? what if he didn’t get invited to someone’s birthday party?)
    My point being that our children will never be entirely what we (or others) expected them to be. Love and acceptance are the keys. And I’m a big fan of the serenity prayer.

  5. autismvox says:

    And perhaps saying “what if” isn’t so much about “what if my child were not autistic,” but somethings all parents ask themselves (my own parents have); about _la condition humaine_?

  6. autismvox says:

    The main “what if” that tends to get into my head is….. “what if” I had gone to another large university and gotten a doctorate in Classics instead of attending the large university where I got my doctorate in Comparative Literature——but time to go pick up Charlie.

  7. Club 166 says:

    “I have done my best”, that is about all the philosophy of living that one needs….Lin-yutang. (Zen philosopher)

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