Leveling the field

A school district in northwestern Canada is opening special classrooms for FASD-affected children. I was struck by this quote from the article:

. . . if you believe that every child should have an opportunity to feel good about themselves, see value in themselves, and leave our system with a diploma or with an opportunity to be an independent in the world, then we have a moral responsibility to level the field for everybody.”

Teachers and students can benefit from even simple awareness of the challenges of FASD. When teachers see lack of normal progress, it doesn’t mean they are doing a bad job or that the student isn’t trying. Child’s brains function differently.

Here’s a bit of information from the child's point of view. And this video offers more educational strategies.

Every child deserves to be seen in a positive light.

Out From Under the Rug

Yesterday there was an article in our local newspaper about how, years ago, doctors never said the word “cancer” because of the sigma. The same was true of schizophrenia. The stigma of mental illness continues, but the conversation is more open now. We are beginning to recognize that mental illness touches many lives, and people are hungry for information.

The story of fetal alcohol spectrum disorder is similar. Most people know very little about FASD, although it affects at least five in one hundred children born today.

And the difficulty of getting a diagnosis is shameful. A doctor would never say, “Looks like pneumonia,” and leave it at that. Although there is not a cure for FASD, there are behavioral and academic approaches that can make a difference.

Children and families affected by FASD can now join online forums for support and information. But we must actively teach about FASD and disseminate information to all.

Not only will this help prevent more cases, but will provide support for those already affected. FASD is a potentially life-threatening condition. We cannot afford to sweep it under the rug. 

The Face of Optimism

Ann Streissguth, leading FASD researcher at the University of Washington.

Dr. Streissguth has been involved in the study of fetal alcohol brain damage since 1972 and was on the team that first identified fetal alcohol syndrome in the scientific literature forty years ago.

Not only does she pursue groundbreaking research but also runs a treatment clinic for children and adolescents affected by FASD.

There, clients may work on practical skills, such as controlling the urge to shoplift—“Hands in your pockets, girls!”

The clinic supports families with counseling services and guidance to help prevent secondary disabilities.

Dr. Streissguth has received many awards for her research and compassionate service.

Ann Streissguth is one of many researchers around the world working on FASD--a topic whose time has come!

Korsakoff's Syndrome

Sandy and my mother had a close bond. Don't laugh about the possibility of olfactory attraction. Both had been immersed in alcohol.

I was glad my mother delighted in Sandy. I was glad she formed a bond with anyone at all.

Her dementia seemed to begin suddenly. Or perhaps I hadn't been paying attention.

She announced that she’d seen Sam, then three, in a yarmulke, walking down the street with her doctor. She was convinced this was real.

Her brain is shrinking, they told us when she was hospitalized with seizures. Had she tried to quit drinking?

Maybe she’d been inspired by her positive thinking pamphlets. I had to honor her intent. But it was too dangerous to go through withdrawal at home.

But she had little success staying sober. And within five years she was almost completely psychotic.

Korsakoff's syndrome: fallout from thiamine deficiency after years of heavy drinking.

My mother died at age sixty-eight. Today would have been her ninetieth birthday.

The Possibilities of Rug Hooking

Yesterday, for the first time in more than twenty years, I got out my mother’s rug hooking supplies. There were two boxes. The smaller box contained some tools— an industrial-looking needle; two hooks, one still marked 99 cents; and a little machine to clamp onto the edge of a table for cutting wool into strips. Below the tools were three bundles of rolled-up burlap. The last one made me gasp. It was a little rug, partially finished, lovely work, I thought, as I inhaled the grassy scent of burlap and ran my fingers over the multi-colored nubs of wool. 

In the larger box I found the stretching frame and a treasure trove of wool in various stages of preparation, a time warp of the tweeds, plaids, and subdued neutrals of my Connecticut girlhood. Some was even bundled into loose skeins of narrow strips, the result of many hours of work.

When we’d cleaned out my mother’s house, I couldn’t get rid of these boxes and have held onto them ever since. They were from the time of my parents’ divorce, when my mother busied herself with repainting the living room, making fresh slipcovers, and learning new crafts. She and our neighbor were like Lucy and Ethel tackling a great adventure.

We kids joined in as apprentices to help my mother with her first hooking project: a circular chair pad. She was going to make a set. I loved the colors of the fabric, the subtleties of the shades of wool, and how they set each other off. Yes, she would carry on and begin anew, her four kids by her side. My mother, not yet even forty, was pretty and optimistic—at least, she was trying.

I don’t know when she started to drink. The times I couldn’t awaken her in the evenings frightened me, but everything seemed okay in the morning, except for her daily sessions gagging in the bathroom.

I learned denial. I wanted to protect her. But things did not end well for my mother. And now, looking back at these beautiful new beginnings of hooked rugs, I can only wish she hadn’t abandoned them.

(Not the original but possibly the next)

The Way We Treat Them

I’ve been thinking a lot about a book I read recently by J. A. Crowe, an educator with years of experience with Fetal Alcohol Spectrum Disorder (FASD) populations. His analysis of school shooters in The Fatal Link is anecdotal, but I found it compelling. What he concludes is that the overwhelming majority of school shooters fit the profile for fetal alcohol brain damage.

It’s true, people with FASD lack executive functioning--the ability to tell right from wrong, understanding of consequences, and impulse control. But having FASD does not make a person a killer. In fact, I believe their problems are exacerbated by the way we treat them, especially the majority who are undiagnosed. Those affected are often frustrated and angry, after years of blame and shame for failing to meet normal expectations.

When Sandy was growing up, no one knew people could have the brain damage of fetal alcohol exposure without the external physical signs. No one knew evidence of the condition could be revealed in behavior. But Sandy, like most with FASD, acted haphazardly. She had terrible judgment and never looked before she leapt. Her motivation was always a version of, “because I wanted to.” Eventually she gravitated toward the disaffected. “I try to be bad,” she said. She had come to believe it was the only thing she could be good at. When caught in the moment, she was at the mercy of her impulses. I still wonder whether, as she took her own life, she truly understood what she was doing.

FASD does not cause people to shoot others, but our societal reaction to this disability can make a huge difference for better or for worse. Focusing on prevention, identification, and early, continuing intervention for FASD is vital not only for those affected, but because FASD affects us all.

Sandy My Name

“August, 1987: Sandy is learning the way we do things at our house. She ate her last bite of dinner so she could have ice cream. She takes naps but sometimes doesn’t want to and has a fit. She loves to play with Sam and Molly. Sandy likes books and puzzles and dollies and going places. Sometimes she says ‘no’ when she really means ‘yes.’”

When the kids were growing up, we were a very well documented family, maintaining a series of scrapbooks with stories and glued-in memorabilia of all kinds, from graphs of scarlet runner bean growth to valentines from Great Aunt Mary typed in Selectric script. Of course, when Sandy came, we reported in on her, too.

Above is an entry from when Sandy had been with us less than a month. We were confident and optimistic. For a two-and-a half-year-old who had been through trauma, her behavior was very appropriate. We thoroughly expected her to improve. I love this image of Sam and Sandy, as we first learned about and adapted to each other. It was the start of a long process. It was the start of our education about FASD.

As a culture we are as yet unaware of the widespread impact of fetal alcohol brain damage--in our schools, on the streets, in connection to mental illness. But this one contributor to the ills of our society is entirely preventable, and there is much hope for improving its outcomes. 

We were too late in recognizing Sandy's invisible disability, but for others there is still a chance. In SANDY MY NAME I tell her story, for the awareness and action that still need to come.