David And Me Under The Sea: Essays From A Decade With Autism

Ten years ago, I said goodbye.

Goodbyes happen every day, and not all of them are bad, you know. There are the garden variety goodbyes you give to your neighbor, your children as they head off to school, your spouse as he climbs in the car. Then there are the harder goodbyes, those of death and separation and failed love that stamp your soul and leave it forever marked. Don't forget the good goodbyes - several past jobs and bosses come to mind, a few acquaintances, and some unwanted pounds around my middle.

Nothing prepared me to say goodbye to my child.

Oh, it's okay, he didn't die. Not the way you're thinking. What I said goodbye to was the child I thought I had. The one who was going to grow up to be football player, or a doctor, or a musician. The one who was going to have a heck of a time getting a word in edgewise around his sister, whenever he learned to speak properly. The one who was going to make one hell of an engineer, with the intricate block towers he made, the concentration he put into each project. The one who would throw his arms around me sometime around the age of two, just like his sister and say I love you, Mommy!

You know…the child I planned for.

What I got instead was a child who spent most of his days calmly ignoring the world around him. A child who tantrumed often, and for no discernable cause. A child who fought me when the seasons changed from winter to summer and we had to put on his first short-sleeved shirt. He cried and shrieked for over an hour, trying frantically to pull the sleeves down to cover his wrists. Eventually, he adapted, but we went through it all again in the fall, when I put the long sleeved shirt on him and he screamed and pushed the sleeves up. He had a great sense of humor, but not enough words to convey it. A rare glimpse appeared here and there, and it was startling when it did. I got the child that was different from all his friends on the block. The child who didn't even have friends, though they tried to have him, sometimes.

I got the autistic child.

The I love you didn't come for a long time, either. I had to learn to listen to what he was doing, not what he was saying. A very wise seven year old girl once told me that you can understand him fine, as long as you don't pay attention to the words. She was right. So I said goodbye to everything I thought I knew about communication, and I learned to talk without speaking, to listen when the words aren't there or are unintelligible strings of movie dialogue, memorized in their entirety after only one viewing. I said goodbye to certain expectations, and he taught me to say goodbye to lots of preconceived notions and outdated norms. On many occasions, I say goodbye to my patience, but it always returns, a little tattered, but ready to do battle again.

There's a certain heartache when the kids at the bus stop are eagerly discussing gaming platforms and favorite TV shows while David prefers to walk around the stop sign, over and over instead of taking part. The heartache turned to a piercing pain when one of the boys called him stupid once. Don't let him play, he said. He's stupid and he'll mess the game up. His mother was horrified, immediately taking her son to task, her apologies endless as she tried to explain to the mother of the special needs kid that her child was only momentarily insensitive and not a total lout. I know that. And he's got a point. David would probably only mess up their game.

In moments like that, I try not to feel outrage or sadness on David's behalf and try to focus instead on what he's teaching them, inadvertently. Patience. Compassion. Tolerance. He's taught me more about these things than I ever thought possible. I think back to the me I was before he came along. I had a beautiful little girl, chatty and bright and endlessly imaginative. We could go out to eat and she'd mostly behave. We could see movies as a family, walk through museums basking in her quiet wonder, laugh and exclaim as she dressed up and put on pretend shows for us, using the curtains on the french doors at her backdrop. I had it all, and I had it through my kid, who was practically perfect in every way. She was the center of the universe, my universe, where everything turned out even better than I'd hoped it would.

Then, with one big punch to the gut, I stood there in the office of the intermediate unit, clutching the paperwork, listening woodenly as the developmental psychologist outlined the educational plan, the bus schedule, the special Ed teachers, the time and effort and work that we hope - we hope - will pay off in the long run.

I remember thinking that I wished I know how long a run it would be. I needed to know he'd be normal. I needed to know that I wouldn't be the mom of a special Ed kid who rides the short bus forever. I needed to know that my kid would be like every other kid, a kid I could brag about, a kid who'd grow up to be something incredible, a kid I could point at and say Yeah, he's mine! with a world of pride in my voice. 

When David was first diagnosed with autism, I remember describing it to friends like this:

David is underwater. He can see us and hear us, but it's distorted. It comes through differently, filters differently. We need to throw that line and pull him out. We need to bring him into the sunlight where he can walk on the land with the rest of us.

He had autism, and I was bound and determined we were going to cure him.

I was arrogant. I was ignorant. And my journey was every bit as painstaking as David's has been. What follows from here are a series of essays, many published on my various blogs and some from my personal journals, chronicling the journey we all took…together.

1

Prelude

Yes, they're needle tracks, there in the bend of my arm. The marks of an obsession that changed my life forever, a single-focus quest that transformed me into a totally different person, with my wholehearted approval. I look at the scars now, and feel no shame.

The needle tracks are from 5+ years of invitro-fertilization cycles. I had to get my blood taken daily during each active cycle, lasting two to three weeks each time. The needle tracks join the scars in my vaginal canal and on my ovaries as a sonic needle punched through vaginal walls to vibrate and suction drug-ripened eggs into a syringe, where they joined my husband's sperm in a Petrie dish, starting the waiting process anew with each attempt.

Then there are the scars you didn't see at the time - the ones that came with the horrific rollercoaster ride that is infertility. There was the time I went to an old coworker's baby shower, only to see two other girls I used to work with as well - and both were pregnant. I left as soon as I could with good grace, and as my car passed a nearby elementary school, I lost it. I looked at the swings and the teeter-totters and knew there was a very good chance that I'd never push my kid on a swing or see-saw up and down and watch them squeal with glee.

Let's not forget every time we went to the mall. I remember passing racks of frilly little girl dresses and touching them wistfully, watching teenage mothers ignore or scream at their young children like they were the biggest inconvenience in the world. And forget Christmas - just seeing the little boys in their vests and bow ties sitting on Santa's lap with that confused look on their face - it was all too hard. I didn't go to the mall much.

I remember visiting my friends with kids, and hearing them lament about how lucky I was. After all, I got to go out when I wanted, take spontaneous vacations, and there was always plenty of us time for me and my husband. I'd just smile and nod, but really, I wanted to tell them that I'd give anything to braid their little girl's hair, or teach their son how to tie his shoes. Just once.

Then there were the dreaded invitations to someone house for a party. When you're a man and someone introduces you to strangers, they say What do you do for a living? When you're a woman – particularly one in your thirties - they glance around at the kids at the party and say Which ones are yours?

When you explain that you're having difficulty, you get generic advice or ridiculous platitudes, and for the record, both are terrible. You just need to relax! My Aunt's cousin's sister's friend from Iowa couldn't have babies for years, then she stopped trying and it just happened. I really didn't want to explain to them that I could relax into a coma while floating naked in a wading pool filled with my husband's semen and I still wouldn't get pregnant without a team of microbiologists nearby. And maybe not even then. The worst ones to hear were, by far It'll happen when it's time or God does everything for a reason. I'd like to reply DUH! to the first and just smack somebody for the second, but my good manners just made me smile and nod. I did that a lot, while the scars built up inside.

The needle tracks have faded quite a bit. You really have to look for them now. They've been replaced by an angry red scar across my pelvic region, stretching several inches across just above my pubic bone. After 2 C-sections, it'll never fade. I don't care. It's my proudest, most visible scar and it means the world to me, as do the children I carried that earned it for me. The not-so-visible scars have been mostly healed, long gone echoes drowned out by babies laughing and a little girl's singing and a little boy pulling the cat's tail.

Still, sometimes I feel the ache of that before-time. My niece and her husband live in a beautiful house with a really friendly dog. Just them, and not by design. I see her watching the kids run and play when we get together, and I feel that lump in her throat. I look at her and her husband, such terrific people, and I ache. I see a news story about a baby in a dumpster, or a gym bag, or abandoned in a car while a parent is off buying drugs, and I ache. I'm a Mom now, but I've never forgotten what it's like to not be. Not when you so badly want to be, that is.

If any of this describes you, please know that I see and feel your scars. Come over sometime, and we'll talk needles and fertility drugs and doctors and bodies and reproductive endocrinology. If you want to, we can talk about thoughtless people, why the unfit can often breed so easily, and how Sesame Street can make you cry sometimes. I'll pour you a cup of tea, listen with both ears, and I promise, I'll let you tie my son’s shoes.

2

The Plan

He was as planned as planned could be.

We'd always planned on having two – we'd said it from our earliest days as an established couple, even before we became engaged or married. We wanted two, and of course, preferably a boy and a girl, but we'd be happy with whatever we got, as long as they were healthy.

I think back on that now and I realize that 'healthy', to my sunny, optimistic, oh-we're-going-to-have-such-beautiful-kids self meant an entirely different set of parameters than it does now. Healthy meant perfect to me then. We were going to have our two perfect kids and buy a minivan and park it in the driveway in front of that beautiful home in suburbia.

As a child of assisted fertility, every phase of my son's conception was watched closely, scheduled down to the minute. My eggs were harvested and combined with his father's sperm in a Petrie dish, and when he divided into eight cells, it was time to put him back inside me.

I got to see him under an electron microscope, my eyes wide with wonder as I realized I could tell him about this someday.

Since he was going to be a second C-section for me, I got to plan the date of his birth. We chose Veteran's Day, because it was a holiday for my husband and he wouldn't have to use vacation time. That morning, we headed to the hospital, reading magazines and whiling away the time. They ended up getting backed up by an emergency, and it was noon before they took me in to the operating room.

Soon I heard an angry wail, and a warm little bundle was lying on my chest. I stared into his deep, brown eyes and marveled at his ten perfect fingers and ten perfect toes. He popped into the world just as planned, where he'd be welcomed by his adorable big sister, just as planned. He'd have a wonderful life where he'd be a football star or a doctor or a teacher or world class snowboarder, just as planned.

That's what you get for trying to plan something like life, I guess.

He didn't roll over at four months, as planned. He didn't crawl at six months, as planned. He didn't walk at one year, as planned. He didn't even get a first tooth as planned, waiting till he was nearly 15 months old.

He didn't talk as planned. He didn't show interest in the things other kids did, as planned.

All of my carefully planned plans are becoming unplanned by this one little, adorable toddler with an overwhelming amount of energy and an equally overwhelming amount of tantrums and meltdowns.

What am I doing wrong? I feel like such a failure.

3

David

"What did he say?"

Why are you getting up? He's fine. He's with the other kids and they're all running around somewhere. Stop stressing.

David is adjusting all right, I guess. He plays, just not with the other kids.

You worry too much. He'll catch up.

David doesn't know it's Christmas. It's December, and I'm in the pediatrician's office for his three year well child visit, and the nurse turns immediately to my smiling, energetic bundle of toddler testosterone and asks the age-old question: Are you ready to see Santa?

David doesn't even look at her. He's running up and down the paper covered exam table, and occasionally trying to climb me.

I smile apologetically. He's really not aware of Santa yet.

Oh, she says. There's a slight hesitation in her voice. And I see it in her eyes.

What three year old doesn't know Santa? He doesn't know who Santa is. Doesn't understand that Christmas is special. Doesn't comprehend that presents are on the way...doesn't, doesn't, doesn't. He just doesn't get it. My throat gets tight, as it always has these last few months as I realize again that I have a son with a problem.

The guilt rears its ugly head. Did I eat the wrong things when I was pregnant? What about that time I had chest pains at 14 weeks and they did that x-ray?