Anchorage Daily News

Doctors tell you, "Don't drink when you're pregnant." 

What they don't tell you is why. 

Here's why: the stories of four families.

Disruption of Neural Network

A recent study at the University of California, Riverside, shows that prenatal exposure to alcohol can significantly alter the expression of genes and the development of neurons in the brain. Science Daily

"I was surprised that the result of alcohol exposure was quite dramatic," said the lead researcher.

Behavioral abnormalities in mice are similar to those seen in prenatal alcohol-exposed children.

But one comment on their statement that FASD without the facial abnormalities is a milder form of the syndrome:

In reality, the presence of visible physical abnormalities is likely to result in early intervention and services, leading to a better outcome. Those without clear visible signs are often misdiagnosed, and the root of their difficulties may never be discovered. FASD without the facial abnormalities is actually a far more insidious form of the syndrome.

On Changing Zero-Tolerance Policies in Schools

  

           Letters to the New York Times: changing zero-tolerance policies in schools.

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.

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.

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:

Photo credit: http://ivn.us/2012/12/15/senate-committee-holds-hearing-on-school-to-prison-pipeline/

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.

Photo credit http://www.suspensionstories.com/school-to-prison-pipeline/

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.

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.

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.

World Alcohol Consumption

Credits: Twisted Sifter

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.

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!

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.

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.

John Kellerman’s article: http://www.fasarizona.com/ihavefas.htm

Teresa’s journey: http://come-over.to/FAS/news/citizen2008a.htm

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.

Young people with the brain damage of FASD need significant support to navigate the legal system, as well as to navigate life.

http://www.sfu.ca/sfunews/stories/2012/fasd-youths-give-false-confessions.html

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.

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.

Read the full article in Science Codex

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.

Adjusting Our Expectations

Social worker and internationally recognized expert Diane Malbin, above, offers this very helpful developmental chart applicable to many children affected by FASD.

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.

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:

4pawsforability  

Connor and Lexi's Story

Service dog story for children

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.