When a group of well-meaning state leaders announced this month an effort to eradicate fetal alcohol syndrome from Alaska, I had mixed feelings. Indignantly I thought, “Are they serious? Don't they know the state's been down this road before?” The reaction was followed by the more-forgiving awareness that any work toward lessening the affliction is good work.
The journalist in me wondered why the group, named Empowering Hope, presented its efforts through Sen. Pete Kelly as though Alaskans were learning about fetal alcohol syndrome and the broader range of impacts known as fetal alcohol spectrum disorders for the first time. Why mount the effort in 2014 after thousands of FASD-affected babies have been born over decades? Where was the conscience, the call to action, 10 years ago? Twenty years ago? Thirty years ago?
The mom in me wanted a more realistic portrayal of the real lives people are making for themselves under the weight of a range of birth defects caused by exposure to alcohol while in the womb.
I have come to learn that a lot of people, incredibly, are still learning about FASDs for the first time. Or, at least, learning for the first time about the scope of personal and societal effects the disorders cause. For those who have known about it, awareness is growing that we can be doing a better job of intervention and prevention. Estimates suggest the lifetime costs for caring for an individual with FAS range from $2 to $4 million.
Statistics for kids like ours awful
Fetal alcohol spectrum disorders result in a broad range of permanent, preventable birth defects characterized by growth deficiencies, central nervous system dysfunctions and in some cases, slight facial anomalies. Fetal alcohol syndrome, or FAS, is the most severe and the easiest among these to diagnose. Fetal alcohol spectrum disorders, or FASDs, are much more common and more difficult to diagnose. Many affected children will look healthy. Like people with certain brain injuries, their disabilities are invisible. These children may have poor memories and difficulty solving problems, controlling impulses or connecting actions with consequences. While many will share similar difficulties, each child's brain is uniquely wired.
Our family lives this every hour of every day. Sometimes it is really difficult. Most often, it is rewarding. When I started writing this article, our three teenagers were doing well. They were engaged at school. Playing music and sports. Looking ahead to high school graduations, college and first careers. They have worked hard to get to these points. And yet we know their struggles are not over. Young adulthood will be the riskiest time for them. By the time this piece had gone to my editors for a final read-through, our youngest teen had started refusing to do schoolwork.
The statistics for kids like ours are awful. Children with brain damage caused by alcohol exposure will likely have a hard time making and keeping friends, following rules, learning in school, living independently, holding down jobs, finding safe life partners. They are at very high risk for drug and alcohol addiction, victimization, incarceration. But these are not new statistics. And this is not a public health matter that has until now gone unnoticed or unaddressed.
Fetal alcohol syndrome, first discovered in 1968, was given the label by which it continues to be known more than 40 years ago. With the label came studies, warnings, interventions and tracking programs. Professionals busied themselves quantifying and labeling the problem. Meanwhile, on the front lines, moms, dads and other caregivers have lived a quiet revolution of social change in the micro-adjustments they make every day trying to help FAS and FASD-afflicted young people flourish.
FAS battle cry
When Sen. Pete Kelly, a Fairbanks Republican and member of Empowering Hope, recently announced “we have declared war on fetal alcohol syndrome,” it was both a refrain and a battle cry. Alaska's “war” on FAS began in the 1980s. The state soon became a national leader in screening for the disorder. Generations of families have grown up during an era of intervention, education and prevention.
Yet an estimated 173 affected babies are born in Alaska every year. The best estimates show that of every 10,000 births, 15 have fetal alcohol syndrome and another 158 have fetal alcohol spectrum disorder. Experts who track this data believe these estimates are low.
Another member of Empowering Hope, Sen. Anna Fairclough, R-Anchorage, said she and others believe that “if any mother knew the damage that they were causing their child for the rest of their lives, they wouldn’t make that choice.”
No mother I have met would ever intentionally do something to harm their child. But alcoholism and addiction are sinister diseases. The desire or need to drink can overpower a mother-to-be’s healthier instincts. Which is where the wide range of services a mother or family might need become as important as merely knowing not to drink. Knowing not to drink, and having the support and care needed to not do it, are very different.
Sen. Kelly is not naive about this. He has said it will take 20 years, likely longer, to eradicate birth defects attributable to alcohol exposure. And he’s keenly aware that when he and other lawmakers talk about what’s plaguing Alaskans and how to create better communities and healthier people, the conversation is a familiar one.
“It just dawned on me that the things we were talking about were the same things that we were talking about when I came here as a freshman (legislator) in 1995,” he explained in an interview from his office in Juneau, the state's capital.
$29 million congressional earmark
Over the years, a lot of money has gone toward fetal alcohol syndrome in Alaska.
In the early years, the Indian Health Service and Centers for Disease Control got involved. The money flow peaked in 2000 with a $29 million congressional earmark that allowed the state to create diagnostic teams, provide services to affected individuals and families, and get the word out that mothers should refrain from drinking while pregnant.
A three-year Alaska media campaign was launched. It helped, but when the money ran out, the campaign stopped. Without an ever-present message, maintaining the momentum of change can be difficult.
“We need to have a clear bottom line about what we think about alcohol, and we have not been able to sustain that from the time we had the $29 million,” said Diane Casto, a prevention and early intervention manager in Alaska’s Division of Behavioral Health and someone who has been on the front lines of the state’s FAS efforts for decades. “Really changing the ... attitude and behaviors of people takes a multidisciplinary approach.”
Kelly and Fairclough are ready to support one of Empowering Hope’s first goals, bringing the message about sober pregnancies to the doorsteps of women who need to hear it. They want to identify and empower what they call “natural responders” in every community -- people who are trusted, respected, and can be a support system helping women make healthy choices.
As the journalist mom of alcohol-affected kids, here's the rub: That approach assumes that a woman who knows drinking places her child at risk is capable of stopping. Yet studies out of the University of Washington, which has studied FAS for years and houses its own diagnostic and prevention clinic, show an overwhelming majority of women who have given birth to an affected child didn’t want to stop drinking. The studies also show that many women suffered from a serious mental health disorder. Another 98 percent of the women studied had suffered physical, emotional or sexual abuse in their lives, often as children.
“It was shocking to me,” Casto said. “Shocking.”
“When you say, ‘Oh, just stop drinking’ to people who are drinking to self-medicate because they have not dealt with the trauma, it’s just not that easy. Our treatment services need to not just deal with alcohol addiction, but (also) the underlying issues so that they can stop drinking for good,” Casto said.
'Power of denial in a society'
Those University of Washington studies also show that moms who have given birth to one alcohol-affected child are likely to birth more of them. And about half of these moms are likely affected by fetal alcohol exposure themselves.
“Talk about the power of denial in a society,” said Deb Evensen, an educational behavior consultant who offers fetal alcohol consultation and training services to school districts, and a person who has worked in the field for years, both in Alaska and in Canada.
She said programs designed to help the most vulnerable either don't exist or don't provide enough support. “There is very little help for adults with FASD,” Evensen said. “Until we provide that service, what is going to change?”
Evensen believes progress has been made. But she also believes Alaska still isn't reaching what she calls a true “grassroots” level of change.
“It is stunning that we still have (FAS/D),” she said.
It’s time, Kelly has said, to tackle Alaska's social woes the same way it has approached legacy projects -- efforts that take time and big investments up front but are expected to deliver results over the long term, like gas pipelines and mega-dams.
Kelly’s short-term plans call for starting small, at a lower budget, with natural responders and existing support networks while reinforcing the sobriety messaging. One idea the group has is to make pregnancy tests freely available in public areas, like restaurants, bars and restrooms, with a note about making the choice to stay sober.
“The pregnancy test assumes the best of us. If you know, you'll make the right decision,” Kelly said.
'I am not my disability'
As a parent intimately familiar with the struggles that FASD-affected young people experience, it is easy to support any effort that prevents another child from living with preventable birth defects.
Yet our family has also witnessed the fulfillment and joy of walking alongside our kids as they mature and is seeing firsthand how, with the right support, they defy the statistics.
My teenage daughter has worked hard to overcome learning disabilities FASD bestowed upon her. She will tell you how she refuses to have her identity defined by her diagnosis. “Most times I try to not see myself as my disability, because I am not my disability. I am me,” she explained to me when we were talking at home about this article. “But sometimes I need to know that I have this (FASD), and that's the reason some things are hard.”
What’s hard? Algebra. Abstract concepts. Money management. Keeping track of time. Interpreting non-verbal language cues. (Our kids’ teacher taught them about facial microexpressions to help them get the hang of this nuanced skill that many of us take for granted.) For our daughter, some memories are exceptionally crisp and clear, but she will forget simple things, like to eat lunch or whether she's taken her daily medicine. Also difficult is being behind the curve with some very American rite-of-passage milestones, like getting a driver’s license or owning a car.
Her younger brother is empathetic and delightfully smiley, yet he struggles with impulse control and is easily distracted. Getting to school on time and staying on task once he’s there are daily challenges. Some days are great. Others are not. Ask him what the most difficult part of living with FASD is, and he’ll deliver, with an exasperated sigh, “Keeping it together.”
Here's what we know about the cycle that leads to a pregnancy affected by alcohol:
• Beginning anti-drinking efforts during pregnancy is not as ideal as intervening sooner;
• Many women who are birthing children with alcohol-related effects have been victims of abuse, and they drink to cope with the trauma. Many may also be living with FASD themselves; and
• Both men and women have a better chance at success when they are shored up by positive family relationships, allowing them to be as independent and productive as possible.
Knowing this, it should be glaringly clear that eradicating FAS and FASD will not come just from solely urging pregnant women to stop drinking alcohol.
'We've got to start somewhere'
From what my family has experienced, to stop the liquor from flowing through the lips of a mom-to-be, that mom-to-be needs a healthier life experience, a life free from violence and abuse. If she suffered abuse, she needs access to interventions that will help her overcome trauma. If she is an adult living with FASD, she may need help with daily living skills to keep herself and her family stable and whole.
Freeing Alaska from the poverty, isolation, violence, mental health disorders and drug and alcohol addictions that leave individuals feeling hopeless and trapped will not be easy or inexpensive. Alaskans deserve a state that’s in it for the long game.
In an interview, Sen. Kelly acknowledged that “Alaska has a lot of places where we aren't even taking care of people’s needs.”
“Egads, it's going to take a lot of money. But we've got to start somewhere,” he said.
Here’s hoping that Empowering Hope can deliver changes. But let’s not forget the full spectrum of improvements needed, from infrastructure to mindsets, to fully realize the transformation Kelly and his group want.
Diagnosed with FASD, my kids put faces on many of the statistics journalists and lawmakers are quick to invoke. And they are an anomaly, a success story countering the negative outcomes that statistics predict. The hope for my kids and kids like them should be something more than wishing they hadn't been born the way they were.
Preventing other children from dealing with the same challenges is important. But giving kids like mine the chance to prove they can shine among -- or even outshine -- the rest of us should be part of the equation, too.
Jill Burke is a staff writer for Alaska Dispatch and the mom of three teenagers with fetal alcohol spectrum disorder. Contact her at jill(at)alaskadispatch.com.
The views expressed here are the writer's own and are not necessarily endorsed by Alaska Dispatch, which welcomes a broad range of viewpoints. To submit a piece for consideration, e-mail commentary(at)alaskadispatch.com.