Rat Experiment

Rats were used in a University of Washington fetal alcohol experiment. The rats looked normal, but one group had been exposed to alcohol before birth. Whenever they instinctively entered the dark area of their cage, the rats would receive an electrical shock.

Counter to their instincts, the normal rats learned to remain in the light portion of the cage. But the fetal alcohol-exposed rats continually re-entered the dark area.

They repeated this cycle of shock-and-flee until the researchers stopped the experiment. Rats in the fetal alcohol-exposed group could not control their impulses or learn from experience despite negative consequences.

I thought of Sandy, shrugging, telling me she’d walked on the sprayed lawn because she wanted to. Sandy, climbing into a boy’s bedroom window, saying she wanted to have sex. Sandy, asking me if I’d ever heard of a klepto, sobbing that she couldn’t get “no relief” until she stole. Sandy jumping out of second story windows. Sandy setting fires. Sandy taking drugs. We had no idea she acted on impulse because she had brain damage. If only we had.

 

Chick Experiment

The University of Washington Department of Psychiatry and Behavioral Sciences has done important research on the effects of prenatal alcohol exposure.

One experiment exposed chicks still in the egg to alcohol. Once hatched, they and a group of normal chicks were put behind a clear plexiglass barrier. Food was visible on the other side. A door not in their direct line of sight provided access to the food.

The normal chicks took a few pecks at the plexiglass, then started moving about, discovered the door, and got to the food.

The alcohol-exposed chicks kept pecking at the barrier. Finally, the researchers guided the chicks to the door, but the next day, unlike their normal peers, the alcohol-exposed chicks still just pecked at the window.

After five days of guidance through the door, some began to learn. Many never did. These chicks had been exposed to enough alcohol that it affected their brains but not enough to cause physical changes in their outward appearance.

When I heard about these experiments, I thought of Sandy tripping over my foot again and again in the pool, inflexibly repeating the same mistake. I thought of her unable to retain what she had been taught, relearning math concepts and spelling words again and again.

Although this research didn’t help Sandy, it was a comforting to have an explanation for some of her difficulties.

Last Sunday

Last Sunday we hiked in the mountains where seven years ago we scattered Sandy’s ashes. The weather was beautiful—in the 30s with mostly sunny skies and several inches of snow on the ground. We admired the views of snowy peaks and the forest of deep green firs with patches of silver, bare-branched aspens.

On our way down, a group of six or seven older women suddenly appeared, laughing and chattering, beautiful against the snow in their cornflower blue, lavender, and gray winter gear, like a flock of happy angels. They asked if we would take their picture. While Ron tended to the photo, I noticed the most amazing tree.

A smaller aspen had fallen against a larger one, which grew around it in a curlicue as if to support it. But the smaller tree was leaning at an impossible angle and eventually broke off and died. This was my favorite photo of the day. I only wish the smaller tree had managed to survive.

Measuring

Shortly before Sandy died, my father told me that hers was the saddest story he’d ever heard.

Yes, and I want the world to know. I want the world to change. I want us to stop destroying the brains of our babies before they are born.

Not only was Sandy's life destroyed by her lack of judgment and impulsiveness, equally significant was the fact that Sandy could never measure up to anyone’s expectations. That may be the cruelest part. We exacerbate the damage by expecting FASD children with hidden disabilities to function normally. They can’t. On some level they know it. Constantly meeting with failure, they're set on a negative course early on.

Yes, her story was sad, but looking at it a different way, perhaps the important thing is not whether she measured up to society’s values.

Sandy forced us to confront our assumptions. It was painful and messy to shed expectations, but raising a child like Sandy, our family had no choice. She made us let go of shortsighted goals. She helped us to reach beyond ourselves and discover strengths we didn’t know we had. Sandy’s gift was to open our hearts.

Shortly before Sandy died, she told me she’d had a happy childhood. And for the last years of her life she was in a loving relationship with a young man who truly cared. Measured by a different yardstick Sandy’s life was not sad. Measured differently she achieved what some people never have. Measured differently she gained a voice in the fight against fetal brain damage. These are the only ways I can measure now, because I loved her and because I need to believe her life mattered.

No Controversy

Occasionally you see articles that call drinking during pregnancy a controversy. There is no controversy. No known amount of alcohol can be ingested during pregnancy without risk to the fetus.

You may tell yourself that one drink wouldn’t hurt anything. You may even know someone who drank during pregnancy and her baby turned out fine. But the risk is still there, and children in studies are only followed until age five. Neurological damage may not be obvious until children enter school unable to focus, comprehend abstract concepts, or control behavioral outbursts. Or until the teen years, when mental illness develops. Or young adulthood, when your baby ends up on the street.

Perhaps your doctor told you it was all right to have a glass of wine or two. But individual doctors are fallible. The American College of Obstetricians and Gynecologists, the American Academy of Pediatrics, the U.S. Surgeon General, and the Center for Disease Control advise pregnant women not to drink alcohol at all. No amount has been proven safe. The same amount of alcohol that might help you relax has a much more powerful effect upon your developing child. You would never give your baby a bottle of alcohol. The fetus is vastly more vulnerable.

Drinking during pregnancy is not completely a personal decision. It is also a public health issue. Sixty percent of those affected by FASD commit crimes, many of them violent. A baby with a fully functioning brain is much less likely to be a burden and a danger to you, your community, and to him/herself. I say this from the heartbreak of having raised an alcohol-affected child. Don't play roulette with your baby's brain.

Is This a True Story?

Yes, all of the events in the book Sandy My Name are true. Much of her dialogue was written in Sandy’s own words, indelibly seared into my brain.

To maintain the privacy of those in the story, I changed names and some settings to disguise identities. The only two real names in the book are Sandy’s and mine. 

But when Sandy changed her last name during our trip to Colorado, she also changed her first name. Since the name Sandy was so significant to the book, I didn’t want to change it. And it could be confusing to change the name of the main character in the middle of the story. So I kept her name as Sandy. I had already given her a different last name to protect the identities of her birth parents.

Notes and records I kept along the way helped me remember the sequence of events and conversations. At times I had to fill in dialogue, staying true to the intent, with what could have been said. In order to streamline the narrative, I used a few composite characters and compressed some of the action. Most events in the book are unaltered in any way.

Finishing

Two years of outpouring, six years of shaping, twelve main revisions, and I still wasn’t done. Insightful friends read the book. With their feedback, I continued honing the story line, dispensing with superfluous cuteness and reining in secondary characters. I combed through the book again and again, tinkering with words and phrases, learning to trust my own voice.

Finally, I started to think I was done. Multiple times I thought I was done, but after letting the book rest, I could see there was still more to do. In some areas I needed to go deeper. I steeled myself to re-visit my mother’s role--her alcohol-induced dementia, but also her younger years, which helped me find a bit of resolution. I’d resisted her for a long time.

I had to force myself to add the hardest parts: Ron’s brush with mental illness and our marital difficulties. Both are compressed, so as not to take over Sandy’s story. But it was fallout from and part of the picture of our life with Sandy. Many families of the mentally ill often deal in isolation with living hell. The stress ends many marriages.

I hope we become more willing to grapple with the complex topics of mental illness and fetal alcohol brain damage.

As I send SANDY MY NAME out into the world, my hope is that her story will convey both the tragedy and danger of prenatal alcohol exposure. Her life should have been different. For all our sakes, we need to do better. I hope the world will take notice.