What is a child?

When I was in my 20s, I had this idea that if I conceived a child with a trisomy--like trisomy 18 or Down syndrome or other significant, possibly fatal problem--I would have an abortion because there wasn't any point in bringing someone into the world with such significant problems, starting out with such significant deficits, requiring likely lifetime parental support or enduring an early death.

Yes. Like many people, I was a total idiot when I was in my 20s. Before you start excoriating me for the way I was two decades ago, hold off for a bit.

As with many young people, I lived in a world that was pretty black and white in those days: There were the things that seemed logical and practical (i.e., anything that made my life easier) and the things that seemed irrational and impractical (i.e., anything that added chaos, reduced perfection, enhanced inefficiency).

In other words, I was childless.

My perception of what it meant to be a parent began to change before I became one, strangely enough thanks to a piece by a contributor to our local newspaper, a woman with whom I rarely agreed. In it, she wrote of carrying a child with a fatal trisomy to term. She'd known well before the birth that the child was affected. In her piece, she wrote of the birth, of the child's short 45-minute life, of the celebration of life and the grief over the loss they knew would come. It was a portrait of parenting--of parenting any child under any conditions--writ in that briefest of lives, given in 500 or fewer words in my local paper. It was with her words that I began to understand more about what a child is, what a parent is, what an individual, no matter the circumstances, brings to this flickering realm of here-today, gone-tomorrow in the way of permanency amid the transience. I began to grasp the point.

And then I had children of my own. As I've noted previously, my first child scared the hell out of me for weeks. Even though I was in my 30s and naturally thought I knew almost everything or at least knew better, I was not ready for this parenting thing. This infant wasn't just some extension of me, something the Viking and I would mould to perfection, something that would conform to what we expected of him. No. From the get-go, this child was a person, an individual with rights and expectations and desires that clearly differed from our own. For example, we wanted to sleep all night. He did not. And so on.

After coming around to this understanding of my first son as an individual even at the age of a few weeks, as someone with just as much say in his life as I would have--and later even more--I made a fairly quick and complete adjustment. To me, all of my children are individuals, all have been complete people from their emergence, all worthy of my respect for and attention to their perspective, even if ultimately, I assert the "mom knows better" decisive finality. My children are--and have been always--people, people whom I greatly esteem.

Having clearly and completely immersed myself in this understanding, I look back on my 20s' attitude with some shame and head-shaking pity at my sheer stupidity, cold brutality, at my irrationality masked by a seeming Spock-like pragmatism. What I hadn't recognized in my salad days was that every individual, even an infant with a trisomy who lives no longer than 45 minutes, has something to offer, has worth, a life with meaning. Once they're here, the onus is on us to respect their individualness, accept their personhood, seek what is good about them and embrace the rest with our deepest understanding. Do not mistake this as an anti-choice stance. It's not. It's a grasp of a complex interaction among individual presence and a greater picture we may not understand in the moment and acceptance and appreciation.

With this depth of understanding that I'd attained, I encountered the world of autism parents after our oldest child was diagnosed at age 3. While I felt an immediate kinship with many parents because of their similar acceptance and embrace of their children--and I'm pretty sure you know who you are--other attitudes I came across left me feeling a helpless pity and truly deep empathy for the parent and the child. The parents were angry. They didn't describe their children as individuals with personhood to them, but as toxic creatures, not their real selves, mercury poisoned and vaccine harmed, something to be dosed mercilessly with a kitchen sink full of horrific biomed/woo interventions in an effort to "bring back" the child they thought they...deserved? Had? Expected? I don't know. I had to wonder--and still do--if a different attitude, less screwing around with hormones and chelators, a greater acceptance, would yield a happier outlook all around.

The thing is, this attitude is not specific to autism. It's not even specific to special needs. What is a child? An extension of you? A way to exorcise your own demons from childhood or failures as an adult? A tabula rasa onto which you can engrave the story you wish you could tell about yourself? I've seen it everywhere, this expectation of the child as an appendage of the parent, one that damn well better meet certain criteria or else. Would parents who pour poisons like OSR#1, Lupron, long-term antifungals, and other terrifying compounds into their "toxic" children, who are so angry at their child's imperfections as a human being...would these parents be any different with a fully "neurotypical" child who does not meet parental expectations because she cannot pitch a strike to save her life? Instead of Lupron dosing, would she be sent to weeks and weeks of intensive pitching training against her will? Would these children always fall short in some way simply because they represent yet another angry failure of the parent, another part that doesn't do what it should do, another hope that the Fates have torn away?

What is a child? Descriptions vary. They should be seen and not heard. They're brats who shouldn't be allowed on airplanes or in restaurants. They're some kind of "other," separate from regular adult people and thus not worthy of the same respect or consideration of personhood. They're failures, not because of their own faults but because they cannot assuage their parents' lack of success, need for closure, emotional voids, demands for perfection. They require controlling, beating, punishment, silencing. They're placeholders for people, for what they will become--or what their parents hope they will become--when they ultimately grow into real individuals.

If you doubt that any of the above is an accurate reflection of what a wide swath of people think about children, I invite you to read the comments on any story in the news media about a young child with autism who's experienced negative treatment. Yes. This is really what people think. And it permeates among even parents of autistic children. It's rampant in my own community where a confession of "imperfection" of a child is tantamount to branding yourself with a scarlet letter A.

I'm not arguing for letting a child ride roughshod over everyone within range. Children, as young individuals learning to navigate the world where, presumably, they'll spend decades as adults, require discipline (in the truest sense of the word, teaching), tools, assistance, learning. I'm no advocate of giving little Timmy everything he wants. I don't expect people to do that for me as an adult, so why would I expect that for a child? But I expect that people in my life respect my personhood, my effort, my voice, and my needs, and children deserve the same, whether their lives encompass 45 minutes or 100 years.

I know that in another 20 years, when I'm in my 60s and not my 40s, I'll probably look back on this with head-shaking pity at what an idiot I am right now, but I'm going to go out on a limb here: Whether you like it or not, whether you're a parent or not, whether your child is autistic or special needs or not, a child--no matter what the label, the difference, the limitations, the potential, the failures to succeed where you failed--is an individual, a person, a contributor to this swirling mass of humanity in ways that you cannot foresee, in ways that will be permanent amidst our transience. And the onus is on you, on me, on all of us, to respect that.