The Story of 10 year old Annie Who Lives with FASD

Recently, states have been restructuring the departments of health and human services to provide more comprehensive, consolidated care in a systematic way rather than through disjointed bureaucracies of the past half century.  Departments of Mental Health, Public Health, Substance Abuse Services, and Developmental Disabilities – all essentially serving the 12% of the population in the socially disenfranchised underclass – are being reorganized to provide a holistic approach to better serve the underserved populations and disadvantaged.

With change comes concern that even the best intentions may lead to more people falling through the cracks. One mother is fighting to raise awareness about the risk that children like her adoptive daughter with FASD will be lost in the remodeling of health and social service agencies.  “Her little world got robbed. She doesn’t experience things like everybody else does.”

http://www.kfdm.com/shared/news/top-stories/stories/kfdm_vid_12607.shtml

Let’s all join our voices together to ensure that this restructuring actually helps to fill the gaps between service agencies by eliminating some of the bureaucracy and make it easier for families to access services.

Save the Date – Open Door Book Reading and Signing in Bethesda, MD

Event Details
Martha Collins and Mary Evelyn Greene
Sun, 23 Nov, 2014 2:00 PM – 4:00 PM 
Martha Collins reads from Day Unto Day. She is joined by Mary Evelyn Greene, author of When Rain Hurts. The reading will be followed by a reception and book signing.

Martha Collins is the author of Day Unto DayWhite Papers,  and Blue Front , a book-length poem based on a lynching her father witnessed when he was five years old. Collins has also published four earlier collections of poems, three books of co-translations from the Vietnamese, and two chapbooks. Both White Papers andBlue Front won Ohioana awards. Blue Front also won an Anisfield-Wolf Book Award, and was chosen as one of “25 Books to Remember from 2006” by the New York Public Library. Collins’ other awards include fellowships from the NEA, the Bunting Institute, the Ingram Merrill Foundation, and the Witter Bynner Foundation, as well as three Pushcart Prizes, the Alice Fay Di Castagnola Award, a Lannan residency grant, and the Laurence Goldstein Poetry Prize.

Mary Evelyn Greene, Senior Managing Attorney with the Environmental Integrity Project, adopted two IMG_3401toddlers from Russia in 2004. Ever since, she has devoted herself to improving her alcohol-exposed son’s conditions, publishing articles in Adoptive Families Magazine and Adoption Today along the way. She is a contributing author to Easy to Love but Hard to Raise (2012), a collection of stories written for and by parents of special needs kids. She currently lives in Silver Spring with her husband and children. When Rain Hurts is her first book.

Location: The Writer’s Center
4508 Walsh Street
Bethesda, MD 20815
Fees: Free admission
Contact: 301-654-8664 or post.master@writer.org
Calendar: Workshop & Event Calendar
Category: Open Door Reading
As part of the BTST Book Club series Dr. Rich and her change agents were very fortunate to be given the opportunity to sit down with Mary Greene and talk with her about her journey of adoption and the struggles and joy she and her husband have experienced since then.
From discussions about her son’s disruptive behavior to learning about and dealing with his FASD-related special needs, she opens up her life in a very honest and touching way.
“When rain hurts” by Mary Greene
Her book has inspired us and will hopefully motivate others to change their lifestyle behaviors before, not just during, pregnancy.

FASD Matters. Impressions from the 2014 MOFAS conference “FASD and Human Rights”

 MOFASSusan
I’m delighted to be a visiting scholar for the University of Minnesota’s Department of Child Psychiatry this week.  I had the opportunity to meet with many people from the Department who are doing amazing work to prevent and treat Fetal Alcohol Spectrum Disorder.  I presented at the MOFAS  “FASD and Human Rights” conference today:  “From Deinstitutionalization to Incarceration –  The Human Rights Tragedy of FASD”. Perhaps more than any other agency in the country, MOFAS has taken the lead to address the leading preventable cause of neurodevelopmental disorders and intellectual disability in the world.  Up to 50% of the 60,000 children adopted from Russia and the former Soviet countries have some degree of this problem and 1 in 20 (5%) of school age American children in middle class families are affected.  These statistics are not surprising given that 50% of pregnancies are unplanned and there are epidemic rates of childbearing age women binge drinking.
 

The efforts of the Minnesota Organization on Fetal Alcohol Syndrome have led to pregnancy test kits being put in some of the bars in this state to help women stop and think about whether they might be pregnant before they buy a drink.  It’s a great idea, and a novel prevention approach.  It will hopefully help non-pregnant alcohol consumers “stop and think” about preventing pregnancy before they drink.  Though it’s only in 4 bars in the state, if this effort prevents only 4 children from having FAS, the state would save $850,000 per child, accounting for years of productive life lost and healthcare/mental health/delinquency costs.  That would be nearly $1.5M the state could put toward educating its future citizens, creating opportunities for resources for families and prevention of this condition.
While pregnancy test kits are at least further upstream than the tiny warning label on alcohol, I’m our Better Safe than Sorry campaign goes to the small tributaries where the salmon are spawning.  By alcohol consumers preventing pregnancy (through contraception) and avoiding alcohol if pregnant or planning a pregnancy, we will be able to stem the tide on this preventable epidemic.  That’s why we say – It’s Better Safe than Sorry – Alcohol and Unprotected Sex Don’t Mix! 
Simply put – If you use alcohol, contracept! 
For more information:
MOM. LOVE. HOPE. JOY. Three inspiring words and emotions most women experience during pregnancy: Check out MOFAS new campaign 049 ZERO ALCOHOL FOR NINE MONTHS  
http://www.mofas.org/drinking-pregnancy/049-2/

MOFAS