FASD, Now What?

Rubén Rosario: Where's the Mother Hale for kids with fetal alcohol spectrum disorder?
By Rubén Rosario

Updated: 01/21/2009 11:24:28 PM CST

There used to be a figure in New York City affectionately nicknamed Mother Hale. She was a Harlem woman who set up a home to care for crack-addicted babies. Her largesse during the 1980s made national and international news.

The jarring video images of the infants she tended angered as well as melted hearts: wailing and squirming tiny bodies going through painful withdrawal in an incubator or crib. They indelibly put a hard-to-ignore face on the most vulnerable victims of a drug epidemic then sweeping that city, as well as other distressed inner-city neighborhoods throughout the nation.

It may be time for a Mother Hale of Minnesota — not for crack or meth but for fetal alcohol spectrum disorder, or FASD.

It will surely be a tough go. See, drinking alcohol is legal, unlike most other vices, whether you are pregnant or not. Our society largely looks the other way because of this. And there are no such disturbing baby images that make the prime-time news before the cute puppy story to balance things before we head off to sleep or Jay Leno.

It doesn't matter that prenatal alcohol exposure is lifelong and irreversible and causes far more permanent brain damage to fetuses than cocaine, heroin, marijuana or other drugs, according to studies over the past 20 years.

Basically, if you are pregnant, don't drink. Can't say it any simpler.

But try as we might, we cannot legislate away all self-destructive behavior or stupidity.

So, it was not surprising that not one local television camera was in sight Wednesday at a small public-awareness rally at the state Capitol. Oh, there would have been a "good shoot" had 833 school buses, as one speaker pointed out, shown up, crammed with the estimated 50,000 Minnesotans born with FASD.

The folks were forced to settle for one rumpled columnist who nearly skipped the event for something else. Glad he showed up. This is what he learned:

An estimated 8,500 babies are born each year in Minnesota with FASD. Each has a lifetime price tag — from special education, health care, criminal justice and other societal expenses — of an estimated $2.9 million cost to taxpayers.

58 percent of women ages 18 to 44 in Minnesota use alcohol (one or more drinks in the past 30 days).

17 percent of women ages 18 to 44 in Minnesota binge drink (four or more drinks on one occasion in the past 30 days).

This prenatal poison causes massive damage to the brain's frontal lobe, which governs impulse, decision making and considering the consequences of one's actions.

So it was no great surprise to learn that 60 percent of youths ages 12 to 21 with FASD ran afoul of the law and that slightly more than half are incarcerated. Another national study concluded that other such afflicted youths with what was described as "disrupted school experiences" were twice as likely to get into trouble with the law.

And this is what is known. A relatively small percentage of these kids are diagnosed with FASD only after they come in contact with the juvenile justice system. But locking up such afflicted kids seems to be the only and largely uninformed response from the corrections system.

"The juvenile justice system is not equipped to recognize, understand or effectively work with this population of kids," Wade Lennox, a juvenile probation officer in Kanabec County, informed a joint committee of House public safety policy and finance legislators Tuesday. He underlined that traditional methods of dealing with such offenders don't work because of systemwide ignorance about FASD.

TWO SHINING LIGHTS

The good news here is that I identified two potential Mother Hales.

One is Linda Walinski, a psychologist and registered nurse from Isanti and mother of adopted FASD kids.

"They don't understand cause and effect," Walinski told the legislators. She drew a parallel between physically disabled kids and those dealing with FASD.

"We don't expect them to walk, and we don't punish them for not walking," Walinski said. That is exactly what we do with those damaged by prenatal alcohol exposure, she noted. We dismiss and deal with them as "bad" kids.

The other is Kari Fletcher, 43, of Mankato, a mother of six, including two adopted kids with FASD.

Fletcher, who works as a southern regional representative for the Minnesota Organization on Fetal Alcohol Syndrome, is a walking textbook on the prenatal disorder. She introduced me to Ben, 11, and Anna, 6.

Both look like average kids. Fletcher and her husband were foster parents for 16 years before they brought Ben and Anna into their extended family.

"Ben has alcohol-related neurodevelopmental disorder," Fletcher said after Wednesday's event. "He has central nervous system and brain damage. ... If he gets frustrated at school, he will blow. He's learning a lot about his own disability and the way his brain works."

An 11-year-old trying to comprehend his brain-damaged lot in life. Digest that, please, for a moment.

Anna displays some notable features of FASD, "but she does not have the growth deficiency," Fletcher explained.

Fletcher painfully understands the lack of awareness, if not concern.

"It's a legal drug," she said of alcohol. "I hear it all the time: 'That's just for women who are alcoholics. They are the only ones who have kids like this.' "

A 2004 state study found that middle-class, college-educated pregnant women were the most ignorant about the dangers.

Why the compassion amid the frustrations? I ask Fletcher.

"My kids are more intense than others, but then so are the fun and the joy," Fletcher said. "I would not trade them for the world. I would do this (adopt) again in a heartbeat."

Mother Hales indeed.

Rubén Rosario can be reached at rrosario@pioneerpress.com or 651-228-5454.

ONLINE

To learn more about fetal alcohol spectrum disorder, go to mofas.org.