Tuesday, November 26, 2013
Education
Educating students with FASD is one of our most important societal responsibilities.
Problem: Diagnosis is difficult and requires persistent effort. Only a very small percentage of affected children are ever diagnosed.
Problem: Many of the undiagnosed drop out of school.
Problem: School failure results in additional costs to society.
Solution: We could improve chances of success for the FASD-affected by providing an open door to alternative and vocational education for any student exhibiting behaviors typical of FASD exposure.
Benefits for all: Giving FASD-affected children appropriate education increases their chances of living productive, fulfilling lives as contributors to society.
Sunday, November 17, 2013
More Thoughts on Prison Reform
A recent New York Times editorial cites the European approach to corrections, which emphasizes rehabilitation as a model that could prove useful in overhauling the disastrous U. S. prison system.
The comparison suggests that we should keep non-violent offenders out of jail by reforming rigid sentencing, zero tolerance, and three strike policies.
One of the many benefits would be to keep minor offenders from the influence of more experienced inmates. Sandy, for example, received quite a thorough criminal education during her many incarcerations.
Another troubling aspect of the U. S. prison system is its high percentage of mentally ill inmates. When state mental hospitals closed, there were no alternatives for the severely mentally ill. Without a support system, most ended up on the street, enduring psychiatric episodes, self-medicating with alcohol and drugs, and committing petty crimes.
Jails then became de facto crisis intervention centers. This Wall Street Journal article details the dismantling of our mental health hospitals and effects upon correctional institutions. Mentally ill prisoners currently cost this country $9 billion every year. Since 94% of FASD-affected people become mentally ill, they are certainly part of this problem.
We can improve mental health services within the prison system. As head of psychiatry for Washington prisons said of the increasing number of severe situations, "Prisons can't say no to the mentally ill. They have to solve the problem."
We can also make a sizable dent in our inmate population and numbers of the mentally ill, by aggressively publicizing that fact that drinking during pregnancy can cause life-shattering, irreparable brain damage to the child and bring high costs to society.
Monday, November 11, 2013
FASD and the School to Prison Pipeline
Photo Credit: http://www.hpjc.org/pipeline
Kudos to Broward County, Florida for making serious changes in school zero-tolerance policies that have been sending disproportionate numbers of racial minorities and special education students into the criminal justice system for non-violent misdemeanors.
FASD-affected students, with their lack of impulse control and judgement, are highly likely to make mistakes that make them candidates for needless incarceration.
The chart below illustrates the cost of criminalizing behavior that in the past would have been handled by the school:
While the cost of incarceration to society is staggering, the cost to individuals can be devastating.
We must look instead at positive alternatives: generous funding of public education and after-school programs, restorative justice, and dismantling the school to prison pipeline across the nation.
Sunday, October 20, 2013
Newspaper Ad
Today's Daily Camera, my local newspaper, included this revolutionary ad.
Here in Boulder County more than 15% of permanent residents and 45% of college students regularly exceed these recommended alcohol limits.
The ad's linked website describes the health risks of excessive alcohol consumption, and includes a quiz on personal drinking habits and information on obtaining treatment. Not once but twice, it states that women who are pregnant, may become pregnant, or are breastfeeding should not use alcohol and specifically lists brain damage as a health risk to the developing fetus.
Way to go, Boulder County!
A recent New York Times editorial, states that one in six Americans and over one in four young adults regularly binge drinks. In addition to the danger of accidents, alcohol poisoning, and liver and brain damage, young women are particularly vulnerable to resulting date rape, unplanned pregnancy, and giving birth to fetal alcohol-exposed babies (FASD).
Help spread the word about safe drinking.
Sunday, October 6, 2013
Valued as Contributing Members of Society
Education in this country has set the wrong goal for our children. Yes, we should expect students to perform to the best of their ability. But for children with brain damage, grade-level proficiency in reading, writing, and math may not always be possible. Instead, we should be asking how we can help make all children contributing and respectful members of society.
This week I heard presentations by fifth grade reading groups--the ESL group, the special ed group, and the proficient and above reading groups. All had done their best to read a wonderful novel listed at 5.5 grade level. They were presenting projects on character arc, plot, symbolism, and theme.
Noteworthy, was the lack of respect some of these ten-year-olds showed toward the less proficient readers. Perhaps not out of purposeful malice, but from a sense of entitlement and lack of empathy. Why could these students not acknowledge and show empathy toward those they considered lesser?
Every child must be educated to make a positive contribution to society, sometimes that means developing skills other times it means developing understanding.
Saturday, September 28, 2013
Short Term 12
Thumbs up for the new movie Short Term 12, which depicts life in a placement center for troubled teens. While the audience sees the stories of only a few characters, we do get an authentic window into the effects of abuse on teens and the healing made possible through dedicated foster families and committed staff.
As in Sandy's case, when children experience abuse, neglect, and poverty on top of the undiagnosed brain damage of FASD ("stack attack"), the effects can be overwhelming. Many of these children don't make it. But as in the movie, we keep on trying.
The night after we saw the film, I dreamed I was going to a train station to take a long trip. For fun (!), I rode my wheelie suitcase down a ramp into the station. As I rolled by the cafe, I saw Sandy, dressed in a neon orange t-shirt, sitting by a stone fireplace, reminiscent of a mountain lodge. Beside her, a small table was set for two, and Sandy sat sipping hot chocolate. She had ordered a ginger beer, open and waiting for me. As I sat down next to her, I floated back to waking consciousness but was left with the treasured feeling of a loving reunion.
Sunday, September 22, 2013
Sunday, September 15, 2013
Re-thinking Everything We Have Learned
As part of the on-going telesummit on FASD social worker and parent Dan Dubovski, shares ideas
about how best to support FASD-affected children. I wish information like this had been available when Sandy was growing up. Instead, we tried to follow normal therapy recommendations with a child affected by FASD--with disastrous results.
Traditional therapies assume clients understand cause and effect, that their executive functioning is intact. The traditional goal is
independence. This is usually not possible for
people with the brain damage of FASD.
Instead, we can help them be successful through positive reinforcement and confidence-building. Teach them through role-playing, mentoring, and the modeling
of positive peers. Break tasks down to tiny parts, so they can practice. We shelter them within a strong framework. Most of all, we communicate their intrinsic value as human beings.
There is much hope for people with FASD.
I wish we had understood Sandy’s condition earlier. Now, I would never press charges against her. I would never allow a situation where she was surrounded by troubled youth. I focus intensively on helping her develop useful skills and talents within a super positive support system.
The presentations of the telesummit are full of useful and important ideas. Thanks to everyone making the world more supportive for those affected by FASD.
I wish we had understood Sandy’s condition earlier. Now, I would never press charges against her. I would never allow a situation where she was surrounded by troubled youth. I focus intensively on helping her develop useful skills and talents within a super positive support system.
The presentations of the telesummit are full of useful and important ideas. Thanks to everyone making the world more supportive for those affected by FASD.
Saturday, September 7, 2013
Living with FASD Tele-Seminar
The Minnesota Organization of Fetal Alcohol Syndrome will be presenting an FASD Teleseminar starting Monday, September 9, 2013 through September 20, with two sessions per day and a window of 48 hours in which to view them.
In the spirit of appreciating humor in the midst of tragedy, the sponsoring website includes wonderful quotes from children with FASD, including:
After I told my daughter, “Keep your eyes peeled,” while we were driving to look for an address, she answered, “Mom, that would hurt!”
Oh, so familiar!Sunday, September 1, 2013
FASD Awareness Month
This September, Fetal Alcohol Awareness month, marks the fortieth anniversary of the discovery of FAS by Doctors Kenneth Lyon Jones and David Smith. Still a leading researcher on the subject, Dr. Jones laments the continued use of alcohol by pregnant women in this article and video.
Saturday, August 17, 2013
FASD Activists
Pictured above is John Kellerman. Now grown, he wrote an article (link below) that beautifully sums up his life as an FASD-affected child. His adoptive mother, Teresa Kellerman started the website http://www.come-over.to/ to provide information for other parents, since very little was available at the time.
Right after Sandy’s death, an on-line support group of FASD parents
contacted us. The first note in the chain was from Teresa Kellerman, who sent out the alert after coming across
Sandy’s obituary.
At the time we were barely coherent but very grateful for the contact with others who understood.
Teresa Kellerman remains one of my great heroes. Her son now joins her in presentations on FASD awareness.
At the time we were barely coherent but very grateful for the contact with others who understood.
Teresa Kellerman remains one of my great heroes. Her son now joins her in presentations on FASD awareness.
John Kellerman’s article: http://www.fasarizona.com/ihavefas.htm
Teresa’s journey: http://come-over.to/FAS/news/citizen2008a.htm
Sunday, August 11, 2013
False Confessions
Prize-winning research by Kaitlyn McLachlan, above, found that 43% of youths affected by FASD in the Canadian criminal justice system gave false confessions under the mistaken belief that they would be released more quickly or to protect a friend.
I thought of Sandy not realizing that after age eighteen her
crimes would go on her permanent record. “They will?” she asked, genuinely
shocked.
Sandy would also do anything to protect her friends. At age thirteen she lied to her boyfriend’s mother, denying their first sexual encounter. “He told her it never happened,” she said, “so I changed my story.” Hearing this broke my heart.
Sandy would also do anything to protect her friends. At age thirteen she lied to her boyfriend’s mother, denying their first sexual encounter. “He told her it never happened,” she said, “so I changed my story.” Hearing this broke my heart.
Young people with the brain damage of FASD need significant support to navigate the legal system, as well as to navigate life.
Sunday, August 4, 2013
White Matter
Highlighted areas
show white matter studied
by Beaulieu and
Rasmussen at the University of Alberta
A new medical study
from the University of Alberta shows that the brains of children affected by
FASD generally do not develop as rapidly as the brains of normal children, with brain
volume and amount of white matter remaining lower as the children grow up.
But the study also finds that the “brain wiring” within the white matter of children affected by FASD can, under the right circumstances, develop more rapidly.
But the study also finds that the “brain wiring” within the white matter of children affected by FASD can, under the right circumstances, develop more rapidly.
As a teacher, I have used interventions that build brain connections to help these
children achieve better outcomes.
1) Multi-sensory reading instruction allows children to access information with multiple senses--visual, auditory, and tactile--building stronger connections between letter and sound.
2) Number sense can be taught in a concrete multi-sensory way, starting with visually grouping dots on a card to help understand how numbers can be taken apart and recombined, the first step in mental addition and subtraction.
It's also exciting to think that brain imaging may one day help identify additional specific interventions for children with brain damage from FASD.
1) Multi-sensory reading instruction allows children to access information with multiple senses--visual, auditory, and tactile--building stronger connections between letter and sound.
2) Number sense can be taught in a concrete multi-sensory way, starting with visually grouping dots on a card to help understand how numbers can be taken apart and recombined, the first step in mental addition and subtraction.
It's also exciting to think that brain imaging may one day help identify additional specific interventions for children with brain damage from FASD.
Additionally, Stanford sometimes offers a free on-line class on How To Teach Math, for helping children work on basic number sense. Researchers there continue to come out with useful information on teaching math.
Sunday, July 28, 2013
Adjusting Our Expectations
Saturday, July 20, 2013
Sibling Support
Sandy could be an imaginative, creative playmate, and our children spent many happy hours playing blocks, dress-ups, and make believe when they were young. She could also be unpredictable, short tempered, and wildly out of control. Siblings of children affected by FASD put up with a lot, and their experience can help them become strong, wise adults.
Though Sam and Molly developed maturity and understanding at a young age, growing up with Sandy left its scars. Molly witnessed terrifying violence when Sandy lost control. Sam, away at college during Sandy's most difficult times, suffered the stress of listening to disastrous news flashes he could do nothing about. Both worried about all of our safety. I wish we had been better able to relieve them of these burdens.
Fortunately, support for sibling is now much more widely available. Some of the many sources for information include Socal FASD Network Overview; Substance and Mental Health Services Administration booklet ; sibling support network.
Sam and Molly accepted Sandy with innocent grace. They taught her how to play. They always encouraged her. They shared their parents. We couldn't have survived without them.
Sunday, July 14, 2013
FASD Service Dogs
In the past few years some young people with FASD have begun using psychiatric service dogs with good results. The dogs both protect children and calm them. They can be trained to meet a specific child’s individual needs. For example, a service dog can deter a teenager from self-harming and running away. They can keep an overly trusting FASD-affected child safe from traffic and from stranger danger. The dog basically serves as a kind of "external brain."
Besides guarding a child’s physical safety, the dog’s
natural affection can help improve a child's self-awareness, personal identity, and emotional health. The service dog’s attentive presence and
cuddly weight can help calm a distraught child. Their unconditional love has improved general emotional well-being and empathy for others. Language usage, focus, and
attention span have all been reported to have improved in individual children thanks to
the bond with their service dog.
More about FASD service dogs:
Sunday, July 7, 2013
Above Heart Lake
Today Ron and I hiked to Heart Lake and Rogers Pass. That's me in the photo, a speck in the panoramic view at 12,000 feet. While walking, I found myself thinking about the heart of my memoir about our experience with Sandy.
When Sandy was in middle school and we were in the depths of despair over the increasingly horrifying events in her life, a voice came to me as I was walking and pondering. "Just stick with her," it said as clearly and kindly as if a wise counselor were walking next to me.
The words of the voice sustained me. The fact of the voice astounded me. I clung to the belief that we were not alone. Maybe there was meaning to this overwhelming mess.
It was not until the end of Sandy's life that I truly understood the significance of what I heard. By sticking with her--however imperfectly--we were able to show her that we loved her.
Despite all her attempts to push us away, Sandy saw that we wouldn't give up. Limping, stumbling, even crawling, we forged a bond of love, as important for us as it was to her.
All I can say is thank you.
Sunday, June 30, 2013
FASD Communities
While out walking this week, I found myself pondering what else we could have done to help Sandy when she was a
young adult. Once she turned eighteen, she needed so much emotional
support and practical guidance, yet so little was available to her.
Sandy always had a great love of
animals. What would it take to establish a self-supporting
community with structure and therapy, centered around animal care—doggie day
care, grooming, a kennel for overnight boarding of pets? What if Sandy had been able to live in
a setting of camaraderie, positive direction, and satisfying, productive work?
Such places are now being developed! In 2011 FASD Communities was founded in Hawaii.
This group of parents, social workers, and therapists aims to provide a
supportive, self-sustaining working and living center, so that when those
affected by FASD grow up, they can participate in a community that understands
and supports their needs.
Despite damage to certain parts of the brain, people with fetal alcohol exposure have talents and skills. With care, attention, and supervision they can participate as positive, productive members of society.
They deserve a realistic chance to do so. They deserve the chance to have a life.
Despite damage to certain parts of the brain, people with fetal alcohol exposure have talents and skills. With care, attention, and supervision they can participate as positive, productive members of society.
They deserve a realistic chance to do so. They deserve the chance to have a life.
Sunday, June 23, 2013
Information for Teens
Congratulations to the middle school creator of the prize-winning poster above.
Getting FASD information to teenagers is so very important! Santa Clara County, California made this video for teens. Much of it is from the young mother’s point of view, with information about the effects of alcohol and testimonials from people affected by FASD.
What a big difference it would make to have these facts available to all teenagers!
Sunday, June 16, 2013
Fathers
Happy Father's Day, dads--I hope you know how important you are! Not only is your emotional support vital to the growth and development of your children, it turns out that avoiding alcohol and exposure to other toxins is, too. Fathers do not directly cause FASD, but alcohol use can damage sperm, resulting in learning disabilities and hyperactivity in children.
Thanks and much love, Ron (pictured above with Molly), for being such a great partner and dad these past remarkable thirty-five years.
Sunday, June 9, 2013
Share Your FASD Story
Eileen Bisgard, executive director of NOFAS in Colorado and juvenile court attorney, shares her personal story. To tell your FASD story, email information@nofas.org.
Sunday, June 2, 2013
Words
This recent Radio Lab episode reminded us so much of Sandy. When she
came to us at age two-and-a-half, the social worker told us she had a speech
delay.
In those first months we delighted in her learning words and stringing them together. She gravitated toward nouns. When she formed crude sentences, they always led.
In those first months we delighted in her learning words and stringing them together. She gravitated toward nouns. When she formed crude sentences, they always led.
Then after being with us for three months, Sandy shocked us by crying, “Sandy my name, Sandy my name,” over and over, clapping herself on the chest. For hours.
We’d assumed she'd known her name. She seemed to respond to it.
How had we not known? Was it a dawning concept of self? What was her mindset
before?
And how do we step outside our most basic assumptions?
And how do we step outside our most basic assumptions?
Sunday, May 26, 2013
Native American Youth
In 1973, the year FASD was officially identified by the
scientific community, I was a VISTA volunteer on a Paiute and Shoshone Indian
reservation in Nevada.
The area was remote, with a town of 200 people and nearby reservation of similar size. There was a tiny grocery store, gas station/motel, and several bars. I worked in the K-12 school as an education aide to help Native American youth succeed in school and go on to college. Students were a mix of children from the rancher-controlled town and the large reservation.
Sometimes you would see children waiting in cars parked in front of the bars. Now looking back, I see the faces of FASD.
The area was remote, with a town of 200 people and nearby reservation of similar size. There was a tiny grocery store, gas station/motel, and several bars. I worked in the K-12 school as an education aide to help Native American youth succeed in school and go on to college. Students were a mix of children from the rancher-controlled town and the large reservation.
Sometimes you would see children waiting in cars parked in front of the bars. Now looking back, I see the faces of FASD.
Many reservation families did their best to provide positive cultural connections and dreams for the future. One of my fondest memories
was pow wows, with elders beating traditional drums for circle dances that lasted hours. Parents taught their children beading on soft-skinned
moccasins, gloves, and traditional cradleboards. Many drew on Native American wisdom for their strength.
Pictured above is Morgan Fawcett, a young Native American from Alaska affected by FASD. This link describes his background, his work and foundation. Despite the challenges, he is using his talents to make a difference.
Sunday, May 19, 2013
Sunday, May 12, 2013
Mother's Day
Thank you to my children for the privilege of being entrusted with your lives
in the joyous, humbling, and transformative experience of motherhood.
Sunday, May 5, 2013
The First International Conference on FASD is being held in Edmonton, Alberta, Canada September 23-25, 2013. This conference will be of interest to:
•
Government officials
•
Policymakers in health, education, justice, and social services
• Researchers
in the fields of FASD, alcohol addiction, social
determinants of health, social sciences, and social marketing
• Service
providers and healthcare professionals including
primary care physicians, obstetricians, and gynecologists
•
Indigenous organizations
• Those
affected by FASD, their families, and other caregivers
• Students
• Teachers
and other educators
Hope to see you there!
Sunday, April 28, 2013
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.
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.
Sunday, April 21, 2013
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.
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.
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.
Sunday, April 14, 2013
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.
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!
Sunday, April 7, 2013
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.
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.
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.
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.
Sunday, March 31, 2013
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.
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)
Sunday, March 24, 2013
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.
Sunday, March 17, 2013
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.
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.
Sunday, March 10, 2013
Saturday, March 9, 2013
Hero Awards
Yesterday I gave my fourth graders hero awards. They were on day four out of nine of annual standardized testing. The previous day had been particularly grueling, with six different reading selections and questions. The students in my group, some of whom fit the profile for FASD, were overwhelmed.
I'd tried to encourage them as they slumped down in their seats.
One finally motioned me over. “This just doesn’t make sense!” She pointed
to a metaphorical line of poetry. In our reading group we’d talked about how
words can have different meanings. I’d led them through the verse
book LOVE THAT DOG. They’d responded to the rhythm and rhyme and gleefully wrote poems
of their own. But faced with this stressful testing situation, their pride, their
enjoyment, and everything they knew flew out the window.
I lay awake last night, knowing how damaging the test was to their feelings of worth, trying to find ways to turn it
into something positive. That’s when I decided on hero medals. These students
would face enormous challenges in their lives. I decided to tell them stories of people
who’d dealt with obstacles and let them know that they could be heroes, too.
The secret was to always do their best.
The next day, despite tears from an interpersonal drama that
unfolded in the hall before the test, a feeling of camaraderie
enveloped the room. I told them the tests were made to challenge even the top students in their class, not to worry if some of the questions seemed too hard. They should find the ones that were at their level, concentrate on those, and do the best they could with the others. They put on their hero medals and set to work. “I love my award,” said the girl who’d
initially thrown hers on the floor. “I can show my mom.” On the back I wrote, "She tried hard and never gave up. 2013 Testing."
These students are heroes. Every day they face work that’s
beyond their grasp. They think concretely, not abstractly. They don’t remember. School expects
them to measure up to standards they can never achieve. The students are aware
of the gap. Our job should be to find ways to make their school experience
positive and helpful. Their lives hang in the balance.
So much depends
Upon the state test.
So variably approached,
So ruthlessly
applied.
Saturday, March 2, 2013
The Courage of Birth Mothers
This is a beautiful film. I have so much respect for these
brave mothers.
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