Abortion & Autism: Two A Words (#122)

Readytoride
Months and maybe longer before Charlie was born he was Charlie. My grandfather’s name was Charlie Chew and Charlie–Charles, officially–just seemed the right name for our baby-to-be, if he were a boy. After the ultrasound made this clear (and also revealed Charlie’s big head and long, slender fingers), everyone–Jim and me, my relatives, my middle-school and high-school Latin students–always referred to the moving, growing being inside of me as Charlie.

Prior to my having prenatal testing for Down’s Syndrome, my OBGYN explained the test and my options, among which–should the yet-unborn Charlie test positive–included abortion. "Oh, no," I said, without missing a beat. "You’re sure?" the doctor asked. "Yes," I responded. My decision was entirely based on my feeling some being inside of me for the past several weeks, a being who had hiccups and twisted and stretched and arched his back and made my stomach ripple like ocean water. I had brought up the matter with Jim before seeing the doctor–"this is the appointment when we’re going to talk about the screening for Down’s"–Jim had all but shrugged. "He’s ours, we’ll take care of him."

Since I’ve brought up the "other" a-word–"abortion" on top of my usual "autism"–I’ll note that this is a pro-disabilities post. You may read it with the thought of judging whether it is pro-choice or pro-life; for sure it is thoroughly Pro Charlie. And Charlie has always been "wanted" and always will be.

The admittedly hefty topic of autism and abortion was brought to my attention by an earlier comment by Anonymous on my post Can the real autism expert please stand up? (#116):

A lot of bloggers have commented about an article from the Washington Post, The Abortion Debate No One Wants to Have. I haven’t seen much reaction from the autistic community, though. I wondered what you think.

After the more recent comment by Anonymous, many friends and "fellow autism soldiers" posted incredibly warm and supportive comments of their own, in direct confutation of any accusations that the Internet and computers promote isolation. I know I’m not the only autism parent who has just found it physically impossible to get to a support group or evening information meeting, what with the ever-present need of taking care of and just being with our kids first and foremost. The Internet and blogging in particular are empowering sources of information about autism, about treatments and therapies, and they have also been providing our household with much-appreciated camaraderie on days good and tough. The realities of raising a child with a disability can divide us, but there are many ways in which we can join together and seek justice for our children with autism.

So, the last sentence of Bauer’s Washington Post piece asks a very hard question: "The abortion debate is not just about a woman’s right to choose whether to have a baby; it’s also about a woman’s right to choose which baby she wants to have." Bauer is the mother of a young woman with Down’s Syndrome; Bauer notes that her daughter Margaret "represents a group whose ranks are shrinking because of the wide availability of prenatal testing and abortion. I don’t know how many pregnancies are terminated because of prenatal diagnoses of Down syndrome, but some studies estimate 80 to 90 percent." Margaret, that is, "falls into the category of avoidable [my emphasis] human suffering."

What would we autism parents do if–when–one day there is a prenatal test for autism?

Let me put this another way. If I knew that we would have to go through our child breaking the glass of the floor door with his forehead and denting the living room wall; Jim and me quitting both of our jobs and, more than once, considering abandoning our careers in the service of Charlie; our child’s education requiring us to winnow down our savings, retirement funds, etc., now; the stares, the averted eyes, the disgusted looks, the annoyed looks, the "why can’t they get that kid to behave–some parents they are!" look; the general strain: If I knew that Jim and I would have to spend the better part of our married life with all of this, what would we have done?

My answer to both questions is the same as to my OBGYN back in St. Louis in 1996. I would do exactly the same as I have done. I would have had Charlie and, as Jim said, we would know that we needed to care for him and always to love him.

Obviously the three of us and our extended families and friends have all felt much pain and sorrow in watching Charlie grow and live. Nothing seems to come to Charlie easily; my boy struggled to roll over, to sit up, to scoot on his rear end, to walk (but not to eat: Charlie nursed well and often and took easily to solid food). Or, almost nothing: Ever since he was a babe in our arms and certainly in the scarey, early days of his ABA program, Charlie has always been, and is more than ever to this day, supremely lovable.

The Greek tragedian Aeschylus writes pathe mathon: We learn by suffering. I do not see this as a depressing notion; it rather speaks to how Jim and I have changed our lives–have ourselves grown and learned–thanks to Charlie and, yes, autism. The desire to find the best educational setting for Charlie fueled our decision to leave behind our professor jobs in the midwest and return to New Jersey in 2001. The desire to give Charlie the most chances possible informs our every decision and action. It is our vocation. It is our vocation to ensure that Charlie gets the services and the education that he not only deserves; that are his, as an American citizen, as a worthy and contributing member of our society.

It is thanks to Charlie that Jim and I are flying to Cleveland on Friday afternoon, to present papers at a conference on Autism and Representation and to try to make a difference in our understanding of autism. It is thanks to Charlie that I have my wonderful job teaching Classics and advising students at Saint Peter’s College. It is thanks to Charlie that we returned to New Jersey and have been able to help my ailing in-laws. It is thanks to Charlie that I have met Stella, Tara, Arielah, Jackie, Versha, Claudette, Kristy, Christie, Danielle, and countless others. It is thanks to Charlie that I am writing this and that I have met all my fellow autism blogger compatriots.

Charlie fell asleep before 10pm on the couch. I had woken him up around 7am. We drove Jim to the train and waved him off before proceeding to Charlie’s school; he did well, even though his teacher was not there in the morning. Charlie loaded up the faithful black car with the two stuffed dogs, Bunny, the blue blanket, a small box, some photos and we were off to see Miss Cindy. He has been talking so well thanks to her and all the therapy he has been doing–he worked really well tell 6pm then had had it and kept calling for my parents. In the car, Charlie talked about "fork, poke! Poke chicken. Fork, poke. Bro-kennnnn."
Restinghisweariness
I think he was talking about when, last March, my parents bought a cake to celebrate Jim’s birthday. About the pieces into which he breaks up his food. About the slide on the school playground being "broken" and the need to fix it. About how he likes to crumble the gluten-free chocolate cookies by parents from California into little bits. About how not having "cake fork" some days and the school playground slide being "broken" have immensely bothered him. Fork, poke, chick-en, brok-en: All of these words end in the /k/ sound and perhaps that is why Charlie links them; or perhaps he indeed understands their complex and diverse meanings. I refuse to second-guess him.

It was a peaceful day for Charlie except for about 31 minutes. On arriving at the center where he does his verbal behavior session, he dropped his cheerful smile and flung himself on a large pillow and yelled out. Cindy and I exchanged bemused glances, shrugged, and concluded he was being a good actor–in the next minute, Charlie was smiling and manding for "green appo." He worked hard and mastered some of his programs, and only started a low hum-whine of worry at 6pm when he was, understandably, sensing it was time for "Gong Gong Po Po dinner." He was quiet as we listened to music in the car and then started chatting away: "Gong Gong yellow shirt stairs. Too old Gong Gong yellow shirt stairs. Too old! Mommy!" I think he was referring to a shirt that my dad has worn in the past and that Charlie associates with his visits. My dad did not bring this shirt and Charlie was first disappointed, then used the words "too old" to explain how he understood that not having the shirt no longer bothered him as it used to. It is Charlie’s unique way of explaining himself, and I can’t imagine how my life would have been different had I not had the chance to learn his language.

And I do not like to think, to imagine, a life without Charlie. I would not be here, would not be writing this, and perhaps we would not have had to replace our front door or put ourselves through what we have put ourselves through. And I am more than glad to have had the chance to be Charlie’s mother and to know that, when I give my paper about "poetry and autism" at the conference on Sunday morning, Charlie is speaking in and through and with me.

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