Zika, Microcephaly, Autism & Ableism–In Which I Address My Fears

Dear Lily June,

Because you were born at 36 weeks, and you are now nine months, you’ve spent as much time, if not more, outside of my body as you were in me. This is mindblowing for me to consider. I hold your ever-growing body up next to my belly and imagine what it would be like if you were still, at your size, inside of me. You’d be able, at this point, to kick your way right through me. It’s not a pleasurable fantasy, Lily.

And yet, there were times early on when you’d cry and cry as a newborn, and as a terrified deer-in-headlights new mother, I’d wish I could put you back into my belly. In my womb, I knew exactly how to provide for you. I’d simply rub the stretched skin drum of my tummy and eat. I’d sing to you in the shower, read books to you in bed, and try to quell my swelling anxieties that something could be wrong with the baby body I couldn’t see.

Some part of me thought, once you were out of me, especially near the end when preeclampsia threatened us both, I could breathe a sigh of relief. I thought I could abandon the fears that you might be born too early, too frail. Or many worse things, Lily.

Turns out, when you’re an anxious person, you’ll always find a target for your anxiety. The following post is just a way to exorcise my demons of worry. I will say and get things wrong. I post this in public on purpose; I want those with more experience or knowledge than I have to correct me. And I promise you, Lily, by airing these fears to the public, I am trying to understand them, work through them, and be better than this. So I can give you the best I have to give as your Mommy.

***

We live in the time of the Zika Virus. Mosquitoes, especially in areas like South and Central America, Mexico and the Caribbean, sting a woman who is pregnant, and if she experiences any symptoms at all, they’re generally mild: a fever, a rash, joint pain, a slight redness in the eyes. What happens inside, though, is worse: Her child’s development is stunted, like a stutter rippling through the child’s mind. I don’t understand the science of thing, and far, far better minds than mine are working out the how’s and the what’s and the why’s.

What I understand are the images of the babies, with skulls at least two sizes too small, brains inside sometimes a tenth of the size they’re supposed to be, a condition called microcephaly. I understand the images of the mothers and fathers swaddling and holding their screaming babies, the families rent in pieces because of the pain and the stress and the poverty.

We were ready, Lily, to lose you once when we were told our chances were 5% that you couldn’t overcome my progesterone deficiency. I look at you, your skull the size, presumably, it’s supposed to be, and I think I have absolutely no right to worry. You are here. You are alive. You can smile as well as scream. You can wail, blink, sleep, eat your toys, stand, crawl. You are the pregnant mother’s dream. I know this. I repeat this to myself at night. Of course, every fear is relative.

***

There are 1,000 U.S. cases of Zika Virus each year. In contrast, 200,000 diagnoses are made a year in the U.S. of ASD, Autism Spectrum Disorder. According to the Autism Society, those with ASD make up 1% of the population, and new cases are discovered in 1 out of 68 American babies. According to the CDC, autism is the fastest growing developmental disability, and prevalence has increased by 6-15 percent each year from 2002 to 2010. You were born in 2015.

I Google new facts about autism and its symptoms almost weekly. I know this has more to do with my mental facilities than yours. I am obsessed, Lily, and I’m still trying to understand the how’s and the why’s of it, as well as what my obsession means.

***

There’s a lot of chatter, and I know enough about researching to know a lot of it’s misinformed. Some groups, from non-parent activists to non-doctor politicians, seem to think the rise in ASD’s prevalence is linked with preventative medicine and vaccines. Because I am not armed with the facts, and I have neither the money, the power, nor the medical degree to prove or disprove their theories, this is an argument I choose not to believe.

Others, some doctors and educators and historians and linguists, for instance, argue that ASD is not more prevalent now than it’s ever been, necessarily. They say it’s a matter of both terminology and diagnosis efficiency.  More cases only seem to appear when a set of symptoms is standardized and we know what to call that set. The push to call it a “spectrum” opens the umbrella further, and more and more cases are swept under it. The former academic in me finds this more believable, though not any more comforting.

***

What I’m most afraid of, Lily, is not who you will be, though that factors into it. I read some of Oliver de la Paz’s poems about his autistic son this morning, and what hit me hard about his descriptions of “the boy in the labyrinth” is that he seems so lonely. His experience of this world is so different from my own, I don’t know that I could work my way through the maze to find him even if I had to. Even if he were you.

And that’s the heart of it, Lily. I’m a writer. Language is the way I understand and process everything. I know, my dear, that alone it’s a faulty tool, but when so much went unspoken when I was a child growing up in an abusive family, I clung to words as my escapist reality. As a teenager, I clung to words as my emotional therapy. As a young adult, I clung to words as a way to remake what I’d been through into art, and thus as a way to make all that pain redeemed and redeeming for me. And now, I cling to words as my way to interact with you, to love, to teach.

It’s the social and communicative challenges of ASD that scare me most, and a series of questions cycle through me regularly:

• What if I can’t find a way to convey to you what you mean to me? Will you know, if I can’t say it right, how much I love you?
• What if we can’t bond because I can’t understand you, nor you me? What if we live in the same place, but exist in a different reality?
• What will I do if this world isn’t built for you? What if its sights and sounds frighten, hurt, or confuse you? How will I make that right for you, so that you can love living?
• What will I do if I had to fight those who would aim to bend you into the “normal” box and that’s all it takes to break you?
• What will I do if other children are uncomfortable around you? How can I make them understand, as I do, your beauty?
• How long do I have to learn what you may need before it’s too late for early intervention, and we find ourselves playing catch up? (My sister discovered your cousin Sully’s CP early and he still has a multitude of specialists he goes to weekly.)
• What if I can’t afford the resources you need? (Again, your Aunt Loren has to work part-time to be a full-time resource for Sully, something I can’t do as our student loans make my not working a financial impossibility.) What if I focus too much on “fixing” instead of “understanding” and “aiding” you?
• Does it make me an ableist to worry? Am I doing a disservice to all the incredible children, and all the incredible mothers and fathers of those children, with special needs?

There is so much in this world, Lily, that I want to show you. But this blog, the language I use and the stories I tell and all I’ve shared of my life thus far, what if none of it applies to you? What if we have to remake the world in your image, and I’m not smart enough or good enough to do it?

Will you be able to help me?

***

This could be maternal instinct, my prediction that something really is up. I can’t always get your attention when I want to (Is that ASD or your being a baby?). You don’t always seem to recognize your name (ASD? Baby?). You don’t always look where I point (ASD? Baby?). Your babbling and laughter are sometimes ever-present, but other times there’s a silence that seems disconcerting. You’re like a firefly, Lily: your light is a beauty to behold, but you refuse to keep it constantly shining. You pick and choose the moments that fit you to blink.

These are signs and symptoms that are small enough to mean nothing or large enough to reflect your new reality. But I don’t know, yet, how to read them, or you, or what it means for me to be your mother. I only know that I promise I’ll keep trying and learning, even if it means I’ll keep fearing, too. Whether or not you have ASD, I’ll try to keep in perspective that fears are a part of the process for every new mother. I think we all, Lily, are afraid of not being enough for our sons and daughters. I have to keep watching you, and hoping that what I see will lead me to what I need to do for you.

***

To all those parents of any children who are differently-abled, be it through microcephaly or ASD or any number of things that happen to the body: I admire you. I respect you. And if ever you needed me to, in any way that I could, I would help you. I promise to continue to read and listen to your stories, your blogs, your truths. You are raising beautiful children in hardworking and creative ways, children I hope someday will be Lily’s friends. Thank you.

Picture Credits:

• By Centers for Disease Control and Prevention – http://www.cdc.gov/ncbddd/birthdefects/images/microcephaly-comparison-500px.jpg, Public Domain, https://commons.wikimedia.org/w/index.php?curid=46674502