The Difference of Charlie (#280)

Charlie’s speech therapist started a new job today and was unable to come so we went swimming (six laps!) and then to the grocery store, where Charlie expertly commandeered the cart. As he took shower #2 while singing "Jolly Old St. Nicholas" and "Home on the Range," I found myself taking the temperature of the autism blogosphere tonight on this 3rd day of April, the month that’s been pegged as "Autism Awareness Month."

I detected a tinge of—nervousness?, reflectiveness? self-scrutiny?. Or perhaps it is that, in more than one parent’s post, I detected a fellow autism parent feeling called to explain how loving one’s child is not tantamount to being "against" autism or wanting to "cure" or "defeat" autism. We accept everything about autism. We feel called, in being so very much in loco nostro parentium autismorum puerorum puellarumque, to do everything we can to to ensure the best life for our autistic children, especially after–when–we are gone.
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Charlie is an only child and also my parents’ only grandchild, as my older sister is not going to have children. Charlie has first cousins on Jim’s side and several of my cousins have children (the youngest of whom is two weeks older than Charlie), and while I know they will be there for him, I know that I would feel a bit different if I knew he had a sibling of his own, a member of his own nuclear family. When Charlie was first diagnosed, this worry of "what will happen to Charlie when he’s 70 years old?" made me nearly crazy with terror—maybe even as bad as dog-fear.

And I do think that this fear–which is really a selfish fear, of not being able to end one’s life knowing that all will be accounted for, that Charlie will be fine–is what drives parents to want to "recover" or "cure" a child from autism, to feel that they are in a "war" with Autism The Evil Arch-Enemy.

Like many parents, Jim and I were introduced to the notion of "recovery from autism" in reading Let Me Hear Your Voice: A Family’s Triumph Over Autism by Catherine Maurice (a pseudonym, as are the names for her children in the book). After handing the book back and forth, dragging Charlie away from the red spot of paint and watching him strike his head with his little hand repeatedly, and a long talk as we drove to the Jersey Shore from St. Paul on two hot August days, we decided that we must do an intensive in-home Lovaas ABA program for Charlie.

Under the loving and joyful eyes and laughter of his therapists, Charlie went from crying child on the floor to happy boy running to the table after Stella and teasing Tara by hiding her car keys. Jim’s and my academic training made us more likely to be highly suspicious of ABA and of anything labeled "behavior therapy." We’re philosophically predisposed to be "against" a thinker like B.F. Skinner. Meanwhile, there we were throwing around terms like "reinforcement," "SD," and "discrete trial," all while seeing our ABA therapists and consultants as part of our family.

From the beginning Jim in particular was suspicious of the whole notion of "autism recovery."

"Acceptance" of Charlie-autism-the whole nine yards was obvious. We read and re-read Lovaas’ study of how 47% of a group of children with autism had "recovered" after receiving intensive ABA. "Those children could talk before they started," Jim kept saying, and Charlie was definitely not one of "those." From our previous academic work–Jim’s in American culture and in the history of Catholicism in the United States and mine in Classics and Asian American literature–we were both keenly aware of what it means to be "different," and of how difference has shaped America; how we are e pluribus unum, "one out of many." Jim grew up with ADHD before anyone would have diagnosed it and I had been "the" Asian-American in a classroom of "others": We have long been familiar with being "the different kid" and, therefore, accepting the difference of Charlie required no soul-searching.

Actually, it was automatic.

But Charlie being our first, our only, child, our child, we felt called to do what we could to help him. No language; hitting his head; screeching and back-arching because we didn’t walk in a certain direction: We would not be parents if we did not respond to the responsibility of helping Charlie, even if, in the future, he might and will resent our efforts.

If I think about my own parents (who are regular readers of this blog), I would have to say that I, being from a family of engineers and computer whizzes on both sides, was not "supposed" to end up being a Classics professor at a small Catholic college in Hudson County, New Jersey. Full disclosure: I was not "supposed" to leave California (and northern California, and specifically the Bay Area). I was to attend Cal Berkeley like almost the entire rest of my family. Latin, Greek, and driving with New York taxicabs atop the Pulaski Skyway do not fit into this picture.

Charlie doesn’t, either.

But Charlie has few bigger fans than my parents, who are the only people who he can stay overnight with. My aunts read this blog regularly (well, one reads it when she can get the internet up) and send me fan-e-mail. My sister checks in regularly and my cousin tells me she gets exhausted just reading about everything we do. I’m sure my dad would show my 100-year-old grandmother, Ngin-Ngin , the photos (she only speaks Cantonese) but her house (which has been declared a historical landmark by the State of California) does not have internet access. (Ngin-Ngin doesn’t have a microwave because she cooked a chicken for a couple of hours in it once……maybe Charlie would do the same to see the number spinning down for hours.)

I grew up shy and quiet; the next meal’s menu was often the main topic of conversation at family dinners at the Golden Peacock and Joy Luck and now King Wah (and Charlie adores these dinners when we visit my relatives as he beholds the waiters bringing out at least three steaming dishes and more rice for him and Gong Gong, all placed atop the whirling lazy Susan). When I went back east to attend college, I was shocked to discover my friends tearing each other’s ideas to pieces in late-night sessions as we edited the alternative newspaper—and even more to see them sharing a sandwich and a sweater the next day, best friends forever.

A little–a lot of–contentious argument can go a long way.
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Recently autism bloggers Lisa, Ballastexistenz, and Zilari have been weighing in on–challenging, critiquing, asking questions about–my posts. Their comments have made me wonder anew at how I view Charlie, all while knowing that certain educational and therapeutic choices–ABA–may well be seen very differently from Jim’s and my perspective.

Jim and I are parents, fully liable to make every single mistake of misunderstanding our child, Charlie, in the very act of trying to help him as our own parents were in raising us. And it makes me think, this is the wages of parenthood, giving your all and every last $ for your child while knowing that one day he may say, "Mom and Dad, I have to tell you, I really did not like that…….."

I’m ready and willing for Charlie’s critique of our blundering, always well-meant, loving efforts. When he says "no bedd-time" as he did with an annoyed glance tonight while arranging an old car seat on the sofa (after fluffing up the pillows), I recognize the beginning of his telling me that I’ve got it all wrong.

It isn’t easy being an autism parent.

It isn’t easy learning classical Greek.

It sure is lovely to read Sophocles and Plato in the original and understand how a whole sentence can turn on a participle……

It sure is lovely to witness the gold, the difference of Charlie and learn we how might best take care of our lovely boy.

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Comments
8 Responses to “The Difference of Charlie (#280)”
  1. zilari says:

    I would like to thank you for listening — reading, as it were — my comments, and the comments of other autistic writers. I’ve only been commenting on any “parent blogs” for a short period of time now.

    My initial motivation for doing so came from all the confusion and misconceptions I noted when I read about autistic persons from the perspective of nonautistic persons.

    I figured that given what I’ve learned in terms of navigating life successfully AND autistically, it might give someone else a head-start if their parents were equipped with information that might potentially allow them to interpret their child’s actions more accurately.

    In some ways, I’ve been surprised (pleasantly so) at what I’ve found from parents. I’ve seen you, and others, change your wording in perhaps-subtle but critically important ways.

    I’ve watched people, over the past few months, trade definitions and scrape through layers of semantic confusion only to find that true argument is more rare than common — it’s just that people tend to need prompting in order to share their personal lexicons.

    They also need to recover from the improper definitions and words foisted upon them by the media perception of autism. I cringe every time I see the word “devastating” these days.

    We write, someone is confused or hurt, we explain, and the result is Less Hurt. And more learning.

  2. Kassiane says:

    Most parents want what is best for their kids. I know this.

    I just have trouble reconciling this with some of the things they do. Not necessarily what you do-Charlie seems happy, and y’all seem to have realistic expectations-but parents in general. The things that are done in the name of normalcy need to be scrutinized.

    I know someone seriously traumatized by the FIRST Lovaas study at UCLA (before the 1987 one they TALK about, this one used hitting, yelling, and shocks, it’s my next blog entry), and that some people think comparable damage is acceptable…

    And the real reason I commented is that I saw you had a link to Crazymeds, where I help out *grins*. But I did also mean to say stuff, just…not at 1 AM…

  3. Kassiane, I’m very glad you followed the link from my site to Crazy Meds–your comments add a lot.

    We’re not interested in “Lovaas” and “ABA” from a theoretical or abstract perspective; we’re interested in helping Charlie and ABA has been a powerful method to help him. Lovaas responds to the critique of his work in a long chapter in Teaching Individuals with Developmental Delays.

    http://www.difflearn.com/prodinfo.asp?number=DRB%20008&top=2

  4. Thanks for your thoughtful post, Kristina. I would like to see much more discussion on autism blogs about the fear of “what will happen to my child when I am gone?”

    Parents sometimes feel that autistic writers are ignoring their deep feelings on this issue, but usually that is not intentional. Many autistics have a hard time understanding this fear because it is so far removed from the actual experience of growing up as an autistic person. We see ourselves as human beings who learn, and who mature, and who become more integrated into the world around us, just like anyone else.

    Yes, it can be difficult to learn how to take care of oneself in the adult world, and certainly there are many ways in which a more understanding and supportive social structure could make the transition easier. However, when many parents get the diagnosis, they believe it means that they will need to take care of their child forever, and this assumption is not necessarily based in reality.

    There is a tremendous amount of harm being caused by the popular stereotype of autistics (and people with disability labels in general) as perpetual children in need of lifelong care from parents and society. This stereotype places a huge (and often unnecessary) burden of worry on the parents, it prevents those with disabilities from achieving their full potential, and it needs to be challenged.

  5. KCsMommy says:

    This post reminds me so m uch of my little guy. Kristina I love reading your blog because Charlie and K.C. are very much alike in regards to headbanging, walking in the same direction, back arching, etc. I read about Charlie and can find ways to help K.C. by reading your blog.
    To this day K.C. always wants to walk in one direction, drive a certain way and watch out if you decide to take an alternate route or think, hey, “let’s do something different today!” His therapists are trying to help him with these things as well.

    I love the photo of your two guys above! What handsome fellas! This is one of my all time Charlie favorite photos:)

  6. Zilari: “less hurt, more learning,” is a lovely motto. It’s been a good challenge for me to write about autism without the images of “devastation” etc. that—even with “autism awareness”—are everywhere.

    Bonnie: I will follow up on your suggestion. One thought is that we parents, and people in general, have a very narrowly defined view of “indepedence.” In some ways once could argue that my grandmother has never been independent herself, as she knows no English and has never had to do things like pay bills, etc., and yet of course she is the spiritual center of one side of my family.

    KC’s mom: I check your blog everyday to read your honest views and patience with your boys!

  7. Yes, that’s a very good point; not only could it be argued that the women of our grandmothers’ generation were never independent, that generation’s views of women did not differ much from today’s attitudes toward disability. Women were thought to be weak, intellectually inferior, and lacking the ability to provide for themselves. Many men went through their lives worrying about what would happen to their wives and daughters after they were gone.

    And I agree with you that the concept of “independence” is very narrowly, and often arbitrarily, defined.

  8. squaregirl says:

    Kristina, Being an ABA consultant I am very aware of all the contreversy around it, as well as how it can be percieved. Being associated with Skinner makes me cringe. I try to bring, fun, creativity, compassion and most importantly love to every session I have ever had, and have seen some of the kids I work with light up (for the first time sometimes according to their parents) I always think of Anne Sullivan…in my opinion she used a version of ABA to teach Helen Keller. Before that, Helen resisted learning because she couldn’t seem to make sense of the world.

    I’ve always wondered what the children I’ve worked with will say to me or about me when they are older and able to explain how they felt. Last year, I went to go visit one of the first guys I worked with between the ages of three and six and is now fifteen…he raised his arms in the air and shouted joyfully, “SquareGirl! You’re back!” I told him that I had seen Thao (a therapist he worked with for about two years…and he said “oh yeah, I met her once.” His mom and I laughed and I remarked how Thao was really gonna appreciate that. Needless to say, I was glad to recieve such a warm welcome and it was quite evident that our time together was not a negative (and pretty assuredly) positive experience for him.

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