The Innocents… FASD…. Victims

The Right to a Healthy Brain

award winning author Tiny Titan
Keeping Up with the Tiny Titan –
original post April 3, 2013

I was talking with a friend today about a conversation with Miss Dee who was talking about her FASD.

“Why did she and Little Guy not have the right to be born with healthy brains?”   

How can I answer that question?

We  were venting about the unfairness of FASD.  Those who have FASD are innocent victims. Innocent Victims of being exposed to alcohol prenatally and further victimized by the lack of appropriate services. There is no place for people on the spectrum to fit. Mental Health services, Developmental Disabilities, Autism, are the silos where they can garner support for their prenatally acquired brain injuries. But for many who are on the spectrum they “just” don’t fit. FASD is not even in the DSM as a disorder. So many service silos require a fail first mentality, you have to fall so far to get any help. We need preventative early intervention services from birth on and life long support for those affected.

For the fortunate few, they can fit someplace. They fit on the DD if their IQ’s are low enough, or on the Autism Spectrum if they have enough social inadequacies or sensory issues, or on the Mental Health Spectrum when they have floundered and failed enough to fall into secondary mental health issues. People who have a Traumatic Brain Injury have a silo to garner services, but not FASD.

But also, why can’t we get help for those with FASD’s. It is a shame based disorder. Most will not get diagnosed to the root cause. It is OK to have ADHD, ADD, Autism Spectrum Disorders, LD ( learning disability), or other mental health problems in our society. But to get diagnosed, there has to be confirmation of drinking alcohol during the pregnancy which then becomes someones fault. In our legalistic society, we blame the parents, we blame something for outcomes.  What parent is brave enough to admit they caused their child’s brain injury? There are a few courageous Parents who love their child enough to do it. But most who are diagnosed are not the families of origin.

Kids from the foster care system or adopted from one of the countries known for their alcohol comsumption are sometimes fortunate enough to get diagnosed at a good diagnostic center. But many will still be missed. For many of the others, it is the other “little” d’s that they will be their umbrella.  ADHD, ADD,  ODD (Oppositional Defiance Disorder), AD, SID, ASD, BD, DD, OCD, LD. So many little d’s that they will find a label, but never the underlying cause.

But finding the root cause does not help our kids/adults,if we can be fortunate enough to find a diagnosis. They still will have to be served under one of the umbrella’s that often times are a poor fit.  Many will not.

But there is no place for them to find supportive services that really address their unique needs.  They are often too bright to feel comfortable but will not qualify for services under the Developmental Disabilities Category. They are not Mentally Ill enough to qualify for MH services until they really fall apart. Sometimes when their predisposition for Substance Abuse Issues gets them addicted enough, they may qualify for their services, but they can’t manage to learn and keep the sobriety they teach.

Many a parent calls who have that young person who barely passed high school, who cannot hold a job, they may or may not have gotten special education services and they were adopted or live with a kinship caregiver and know that their young person has been prenatally exposed and they are floundering on where to go next. They do not have enough documentation or they have been held together by the families support and they know that their loved one cannot make it on their own. They want to know what to do, where to go for help? 

I have heard some professionals who actually think these kids can outgrow their Fetal Alcohol Spectrum Disorders???   There were those who told me that it was TOO LATE to help my children and just write them off.

We need HOPE, we need HELP, and we need to recognize FASD.

They were innocent victims of prenatal alcohol exposure and they will pay a lifelong price for their mother’s drinking. 

Micro publisher scores four national books awards on Fetal Alcohol

Today was one of those wild even though you have adults with FASD day… appointments and work and all those other things that play into it… At the neurologist/physical therapist I was reading the newspaper – something I rarely do and they were announcing all the Minnesota Book winners and how powerful of writing state we have and how each of the houses won in their excellence and I thought I wish we could do that… and I read…. what good authors we have here and…. Oh I sure wish we could make some inroads… feels like we have icy roads… more helter-skelter of a day… and more demands and spinning out… how come we can’t seem to make progress with FASD… this day feels like a tornado in glue….

WELL GUESS WHAT – this little tiny itsy bitsy micro publishers with a niche in fetal alcohol spectrum disorders came home to —

1. GOLD! Mom’s Choice – Parenting Books – Special & Exceptional Needs
Our FAScinating Journey – Keys To Brain Potential Along the Path of Prenatal Brain Injury (3rd Revisions) from by Jodee Kulp

2. WINNER! The 2012 USA Best Book Awards! – Young Adult – Fiction
The Whitest Wall by Jodee Kulp

3. FINALIST! The 2012 USA Best Book Awards! – Animals/Novelty
Nuzzle – Love Between a Boy and His Service Dog by Donnie Winokur

4. FINALIST! The 2012 USA Best Book Awards! – Health: Addiction & Recovery
Braided Cord – Tough Times In and Out by Liz Kulp

Now if only someone could help me get the word out in a MUCH MUCH MUCH bigger way

… I am humbled

#10 Days To FASDay – Pass on a fall read

Pass on a fall read to a friend 

you’d like to learn more about 

fetal alcohol… 

Here are a couple curl up to read novels… reviews are appreciated by all authors

Click link above to read more or order books from Amazon


The Whitest Wall by Jodee Kulp 

The Whitest Wall, a debut novel by Jodee Kulp is the winner of 2009 Best Adult Fiction and 2009 Best Young Adult Fiction by The Mom’s Choice Awards Foundation and a finalist for Book of the Year, Multicultural Fiction. The Whitest Wall has meets high school curriculum standards.

Jodee Kulp has created a new third person Catcher in the Rye
Kulp captures the chaotic turmoil of culturally-muddled miscommunication and FAS brain fog of lost-boy Kevin, a 21-year-old going-on-ten jailed for murder, seemingly by his own matter-of-fact confession. The Whitest Wall is a worthy read, a trip into a novel world, written with entertainment quality as vivid as a screenplay with a multitude of metaphors for interpretation and meaning. This tantalizing tale should engage youthful readers and provoke discussion among those of high-school age and older. Caulfield, move over, there is much more to tell!
— Dr. Lyelle Palmer

  • “What you don’t know won’t hurt you is a lie… Fiction, as C.S. Lewis would say, adds to reality, not just describes it. It enriches daily life and irrigates the deserts of our lives. Jodee Kulp is so adept at casting the players in The Whitest Wall and so passionate a story teller you will look at your neighbor through different eyes than ever before.”
    — Mac McConnell, author, “Forever Changed”, “Bozra””

    An inside view of FASD I am overcome with the manner in which Jodee was able to thread together racism, poverty, abuse, fetal alcohol, depression, and post traumatic stress disorder with smoothness that did not confuse the reader.”
    — Ruth A. Rice, FASD Program Director, White Earth

    “This is a must read book for everyone as it’s a topic that has been in the closet for too long. Jodee’s book will open everyone’s eyes that FASD is a very serious issue that we all need to become better educated about as well as develop services for those impacted by it. I can’t wait for Book 2.”
    — Glenys DiLissio Executive Director,

The high school version of The Whitest Wall just came to my office by UPS. A Gold Award winning novel by Mom’s Choice it meets high school curriculum standards in the following areas while building awareness of Fetal Alcohol Spectrum Disoroders. Consider it for the high schools in your areas. Email if you are interested in getting this novel into your high school curriculum.
The Whitest Wall


  1. The Whitest Wall promotes an understanding of the diversity of the American English language in both a current and historic sense with the use of patterns and dialect.
  2. The reader will cross cultures, ethnic groups, geographic regions and social roles to acquire new information for a better response to the needs and demands of society and the workplace.
  3. The reader will draw on personal experience to reflect on the understanding of the other citizens. They will be challenged by portions of the texts with word meanings and misunderstandings. 

  1. Written for the development of a democratic citizenry to enable learners to engage in civic discourse and problem-solving, and to take informed civic action.
  2. The Whitest Wall can provide classroom discourse in the seven of ten theme areas:
    i) Culture
    ii) Time, continuity and change
    iii) People, places and environments
    iv) Individual development and identity
    v) Individuals, groups and institutions
    vi) Power, authority and governance
    vii) Global connections
    viii) Civic ideals and practice 

  1. Students analyze the influence of culture, media, technology and other factors on health.
  2. Students demonstrate understanding of health-enhancing behaviors, reduce health risks, use decision-making skills to enhance health and advocate for personal, family and community health.
  3. The Whitest Wall provides for opens discussion in content areas addressed by the US Center of Disease Control
    i) behaviors that result in intentional or unintentional injury
    ii) alcohol and other drug use
    iii) sexual behaviors
    iv) prevention of fetal alcohol spectrum disorders

#35 Days To FASDay – Invocation

FASDay Invocation & Poem

(This beautiful and inclusive prayer was written and delivered by Sister Eileen Power at the Toronto observance, and has been updated. It’s freely available for anyone in the world who wants to use it. If you use it, please credit Sister Eileen Power, and mention that she is a teaching sister of the Congregation of Notre Dame in Toronto.)

by Sr. Eileen Power, CND

O Great Spirit, Creator of the Universe, we gather on the ninth minute of the ninth hour of the ninth day of the ninth month in the (first year of the New Millennium).
Our connection with our whole world is made visible in a special way today.
People in every time zone gather, as we gather, to change our world.
By our coming together and our working together, we will make the world better.
Accept our prayers with all who are praising you this very moment and with all who will gather today.
As we begin (this millennium), we are filled with hope,
O Ever-Creating God,
that in the circle of life,
in the cosmos, in the womb,
in our hearts,
your hope goes round,
your strength goes round,
your power goes round,
your love goes round and
our hearts and spirits are joined in a new birth.

We gather to intensify our awareness of the fragile beauty of life from the first moment of conception, of the privilege of the nine months of pregnancy, and of our resolve to help all children and adults with fetal substance disorders to lead happier and more fulfilling lives.

All of our words, gestures and hopes of today:
Our silence and our bells,
Our dance and our reflection,
Our words and our drums,
Our children and our knots,
Our lullabies and our resolve,
All of our words, gestures and hopes of today,
Are powerful reminders that life is your gift to us.
May the drumming of our hearts, echoing the drum of the heartbeat of the universe, be the sound of your tender love.
May the knot of our connections be ever firm. And may this special moment on this special day continue to mark the beginning of change, for mothers, for fathers, for all children and for those yet-to-be, and for all of us who join in spirit today around this unique planet, so beautiful, so fragile, so large and yet so small. Together, we are family.

“The Integrity of Hope” (optional)
This is a warm and positive way to end your event, particularly if it is read by a birth mother or person living with FASDs.

The Integrity of Hope
by Michael Kami, 1993

Just as the gentle flutter of a butterfly’s wing
Can change the path of a hurricane
So the gentle beat of a child’s heart
Can change the destiny of the world.
Children are our future and our hope.
Only they determine humanity’s progress.
We must protect all children.
We must feed all children.
We must educate all children.
We must love all children.
They are we and we are they,
In a joint journey to a better future!

#41 Days To FASDay – Gear Up – Recap Ideas

Make a social difference that will impact millions –
help support friends and family members who are pregnant to help
“Build Better Baby Brains” for the future.

September 9

Read Book One before
Book Two – Tiger Butterfly is
released in September 2012

Need gear for your event: 

7 FREE Themes to Build Your Event! 

Simply pick a theme and go – you can get shirts, mugs, stickers, buttons and if you don’t see it let me know and I can make it available.

  1. Each One Reach One Campaign
  2. Be a Life Saver Million Mind March
  3. Raise the Standard – Building Better Baby Brains
  4. Think. before you drink. 
  5. Free Spirit
  6. Trail Markers
  7. Life Braids

Step up to raise the standard. FASD is 100% preventable and lasts a lifetime.
Consider reading “The Whitest Wall” to learn more about the realities of FASD. Book Two – Tiger Butterfly to be released September 9 – share with your friends. Winner Mom’s Choice Gold Best Adult Fiction and Best Young Adult Fiction. High School Curriculum and Discussion available.

To learn more visit:
Million Mind March 09.09 Website

#60 Days of Ideas to Countdown to FASDay Celebrations

Let me know if you choose to do something and we will post it to our international site at

#43 Days To FASDay – Write some letters

Write a Letter to the President or Your Country’s Leader! Write to your mayor or the university president in your community

Write a Letter to the President
or Your Country’s Leader!

This is a great summer family fun project…
Everyone can “make some noise” –
artwork, postcards and note cards are great from kids

Dear President Obama,
Let me tell you about fetal alcohol spectrum disorders or FASD,
…..go kids you can do it!!!

As part of International FASD Awareness Day,
please join us in this easy, free activity
to help raise awareness of FASD at the highest
levels of our government.

This idea originated with Tami Eller, a member of our local FASD Council.
Cheri Scott, FASD Family Support Project – Stone Soup

A knowledge of the path cannot be substituted for putting one foot in front of the other.
M.C. Richards

Dear President Obama…

Let me tell you about FASD…

International FASD Awareness Day Letter Writing Campaign.

Did you know that President Obama reads 10 letters each night written by everyday Americans? Imagine if every letter the President read was written by someone whose life is impacted by Fetal Alcohol Spectrum Disorders.

If everyone affected by FASD writes to the President prior to September 9th then the probability of him opening even one letter regarding FASD is incredible. The more letters, the higher the probability that all ten letters he reads will be written by those affected by FASD.

  • Are you a parent of a child with FASD?
  • Are you an adult with FASD?
  • Doesyour sibling have FASD?
  • Do you teach a child or an adult with FASD?
  • Are you a grandparent of a child with FASD?

For everyone person born affected by prenatal exposure to alcohol, everyone who loves that individual lives are also affected.

Join us in educating President Obama regarding the most prevalent of all birth defects: Fetal Alcohol Spectrum Disorders.

Join us in asking President Obama to ring a bell at 9:09 am on September 9 to recognize the importance of Nine Months of an Alcohol Free Pregnancy.

Starting the week of September 1 send a letter to President Obama telling him your story of how Fetal Alcohol Spectrum Disorders have affected yourself and those you love.

Send President Obama a letter to at:
President Obama
The White House
1600 Pennsylvania Ave NW
Washington, DC 20500

Must be mailed by August 17th!
Send President Obama an email by filling out the form at:

Talking Points

The Facts:

  • Fetal alcohol exposure is an international and national crisis
  • Prenatal exposure to alcohol causes permanent brain damage
  • Prenatal exposure to alcohol is the leading cause of mental retardation
  • Fetal Alcohol Spectrum Disorders are 100% and easily preventable – simply no alcohol consumption during pregnancy
  • Fetal Alcohol Spectrum Disorders are a life long disability – from cradle to grave
  • More babies are born with Fetal Alcohol Spectrum Disorders than Autism Spectrum Disorders or Downs Syndrome
  • There is no safe amount of alcohol to drink during pregnancy
  • It is estimated that more than half of the prison population is affected by FASD
  • Prenatal exposure to alcohol costs the United States millions of dollars a year to provide services to individuals affected by a FASD
  • Early identification and intervention has huge impacts on the reduction of mental health concerns and behaviors resulting in legal intervention
  • Even with early identification and intervention, individuals with a FASD will need to lifelong supports

The Daily Realities of Living with Fetal Alcohol Spectrum Disorders
As a Parent:

  • Struggles with you have raising your child with FASD
  • Struggles you have explaining the invisible brain damage to others who deal with your child* Struggle finding appropriate services for your child
  • The lesson you have learned in your journey of raising a child affected by FASD
  • Your dreams for your child

As an Adult affected by FASD

  • Struggles you had to overcome in your lifetime
  • Strengths and talents you have
  • Accommodations that enable you to be successful

As a Profession working with individuals affected byFASD

  • What systematically is working for your clients
  • What systematically is not working for your clients
  • Struggles your clients face on a daily basis
  • Struggles you face on a daily basis in obtaining resources for your clients
  • What resources are necessary for your clients to be successful

What needs to happen

  • Proclamation by the President of the United States recognizing September 9th as International Fetal Alcohol Spectrum Disorders Awareness Day and the importance of abstaining from alcohol during pregnancy
  • Ask him to ring a bell at 9:09 am on September 9 in recognition of the individuals affected by FASD.
  • Diagnostic teams in all 50 states to facilitate and identify early diagnosis and intervention
  • More resources toward prevention and early intervention

#47 Days To FASDay – Host a mini-event non-alcoholic drink ideas

Organize a Mind Mapping Meeting.

If you have community interest and commitment already and want to move forward, and want to do more than just a one-day media event, then you are ready to follow the Prince George’s Northern Family Health Society model for community action.

If this is too overwhelming, then stick to something simple and easy, like the last idea here:

Host a Mini FASD Awareness Campaign!
This is great for the office – yours or your doctor’s – or any reception area that will give you permission. Just a bowl of Snickers mini bars and some FASD Fact Cards are all you need. Details here.



This set of words means different things to different people.

To a pregnant woman,
it means that she chooses not to drink for the health of her baby.
To a doctor,
it means sifting through information to come to a correct diagnosis.
To a teacher,
it means learning to look at behaviors in a different way.
To a parent or caregiver,
it means trying new things and reaching out for help.
To a couple planning a pregnancy,
it means thinking ahead and avoiding alcohol.
To a pregnant woman with alcoholism,
it means courage to ask for help.
To a community,
it means responding with compassion, understanding and new eyes.

  • Baby Love Activities  BRAND NEW: BABYLOVE PRESENTATION for middle / high school students! (Includes powerpoint with facilitator’s notes and two optional video links, and three optional handouts / activities.)                

  • Advocacy Guidebooks  These two advocacy guidebooks can be filled out by parents / caregivers, then given to new therapists, teachers, etc. (They are identical, except one references FASD, while the other only mentions “brain differences”.)


  • The Substance Abuse and Mental Health Service Administration funds the FASD Center for Excellence, a clearinghouse for FASD resources and materials:
  • The National Organization on Fetal Alcohol Syndrome is dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and to improving the quality of life for affected families and individuals:

Online Manual –
Seminar – Or try our easy, effective, exciting 1½ hour program that walks you
 through the morning of Sept.9: 
(material from 2002 has excellent ideas)

Follow us through the next 60 days and plan your local or personal project to build awareness of fetal alcohol spectrum disorder – Each One Can Reach One!

Need family support visit
Need ideas for adults living with challenges of FASD visit
Need information on fetal alcohol spectrum disorders visit
Interested in service dog for FASD visit

#52 Days To FASDay – Get the Current Research


Stay on top of current statistics and research! 

Provide media interviews and reporters with the newest data.

Thank you for being a part of our Million Mind March to Build Better Baby Brains. The following letter was received by Better Endings New Beginnings – July 19, 2012 – We are offering you an early view today of the report. We appreciate everyone’s efforts. 

Dear Partners,
We would like to share with you findings that were published today in CDC’s Morbidity and Mortality Weekly Report (MMWR). The report*, Alcohol use and binge drinking among women of childbearing age – United States, 2006-2010, describes findings from CDC’s Behavioral Risk Factor Surveillance System (BRFSS) examining any alcohol use and binge drinking among pregnant and nonpregnant women of childbearing age (18-44 years) in the U.S. from 2006 to 2010. The main findings from these data analyses are:
·         7.6% of pregnant women (or 1 in 13) and 51.5% of nonpregnant women (or 1 in 2) reported drinking alcohol in the past 30 days.
·         Among pregnant women, the highest estimates of reported alcohol use were among those who were:
o   Aged 35-44 years (14.3%);
o   White (8.3%);
o   College graduates (10.0%);
o   Employed (9.6%)
·         1.4% of pregnant women (or 1 in 71) and 15.0% of nonpregnant women (or 1 in 7) reported binge drinking in the past 30 days. (Binge drinking was defined as having consumed four or more drinks on an occasion at least one time in the past 30 days.)
·         Among binge drinkers, the average frequency and intensity of binge episodes were similar, about three times per month and approximately six drinks on an occasion, among those who were pregnant and those who were not.
·         Among nonpregnant binge drinkers, binge drinking prevalence, frequency, and intensity were highest among those aged 18-24 years.
Alcohol consumption (any use and binge drinking) among pregnant women is still an important public health concern. Pregnant and nonpregnant women of childbearing age who misuse alcohol are an important population for public health interventions. This report helps identify the population of women who engage in risky drinking behaviors and can help target interventions to prevent alcohol-exposed pregnancies.
Because no safe level of alcohol during pregnancy has been established and alcohol is known to cause birth defects, developmental disabilities, and other adverse pregnancy outcomes, women who are pregnant or who might become pregnant should refrain from drinking alcohol. We know that FASDs are 100% preventable if alcohol is not consumed during pregnancy, so why take the risk?
*Reported by: Claire M. Marchetta, MPH, Clark H. Denny, PhD, R. Louise Floyd, DSN, Nancy E. Cheal, PhD, Joseph E. Sniezek, MD. Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities; Lela R. McKnight-Eily, PhD, Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion, CDC

Fetal Alcohol Syndrome Prevention Team
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Online Manual –
Seminar – Or try our easy, effective, exciting 1½ hour program that walks you
 through the morning of Sept.9: 
(material from 2002 has excellent ideas)

Follow us through the next 60 days and plan your local or personal project to build awareness of fetal alcohol spectrum disorder – Each One Can Reach One!

Need family support visit
Need ideas for adults living with challenges of FASD visit
Need information on fetal alcohol spectrum disorders visit
Interested in service dog for FASD visit

I am haunted and inspired by your story about life with brain damage


Bravo Liz Kulp. 
I am haunted and inspired by your story about life with the brain damage caused by your birth mom drinking alcohol while she was pregnant with you. There should be a law requiring every girl/woman of childbearing age to read this book before they even think about having sex and/or drinking alcohol if they are sexually active. So many women don’t know they are pregnant when they drink. So many women have addiction issues and think they can drink and not hurt their developing babies. So many doctors are ignorant and tell women it’s okay to have a drink or two while they are pregnant; they simply don’t get it that there is no safe amount or kind of alcohol that can be consumed by a woman who is pregnant, nor is there a safe time during pregnancy when a woman can drink. Your life is a heartbreaking testimony to that fact that drinking while pregnant is not unlike taking a sledge hammer to the tender head and brain of your developing baby, and your willingness to share your pain, trauma, abuse, addiction, and recovery makes you a hero. You and your precious parents are brave and tireless and I appreciate all that you do to get the word out about this 100% preventable, 0% curable brain damage: FASD.

Carey Sipp

Mom’s Choice Gold Award – Non Fiction – Life Challenges


Service Dog "Wonder Dog" for Fetal Alcohol Wins International Literary Award

Nuzzle has now received recognition from six prestigious book/audio awards

We will share more about Chancer’s recognition meanwhile….


This book is based on a the true story of a boy born with fetal alcohol related problems, but it is written in a very adorable way. The book is also available on CD and the character’s voices are done to perfection. The story could have been dark and sad, but instead is written in a wonderful, easy to understand, uplifting, empowering way, especially for children. Personally I found it interesting to learn about the world of service dogs and the tremendous amount of effort that goes into preparing the dog, the child and the family. I have a whole new understanding, as do my three children. This is the second book that we have read by Winokur, and hopefully there will soon be a third.”

CONTINUE TO HELP US VOTE FOR CHANCER – ONE VOTE PER DAY THROUGH END OF JUNE – We appreciate getting our children’t voices heard. I voted for Chancer Winokur Animal Humane Society “HERO DOG” award – consider joining me to build awareness of FASDs

We are honored to have Chancer nominated in the Animal Humane Society Hero Dog Contest. Chancer has become our “SpokesDOG” for fetal alcohol awareness. We are allowed to vote once a day – let’s see if we can make some noise.


– Jodee