#FASD Conference Success – Thank You Dr. Jim and #AnnYurcek

Success means a quiet voice and truthful statements
2014 BROCHURE2
FLYER - FASD CONFERENCE-FINAL

Shouting out a special thank you to Dr. Jim Yurcek and his wife Ann Yurcek who stepped up to the plate to make this conference happen when the funding was removed. It was awesome.

  • Loved how everyone in the audience worked together.
  • Loved what Liz and Sam had to say.

 

Hope we impacted people with new ideas and strategies and visions for helping and understanding persons living with the challenges of fetal alcohol spectrum disorders #FASD.

It was a day well served – the road of seeing FASD now has visibility!

Thank you from the Kulp Clan – Let’s do this one again…

 

 

Adoption “Where The Systems Have Failed Both Children and Families”

Adoption in the media again.

Adoption Horror Stories and the Rehoming Stories.

By Ann Yurcek 

Republished with permission
First published Oct 1, 2013

The Child Exchange.. America’s Underground Market for Adopted Children

This time with a big way… Rehoming. Adoptive parents who became so desperate that they resorted to moving their children to another home without going through proper channels.

First I will not condone any of the actions of the parents who put their adoptive children in jeopardy, but I can understand just how desperate they could be.

This blog post is going to be complex, but it is a complex problem that causes parents to give up on their children. I hope this helps to put another spin on it but with research to support my arguments.
Not media hype.

I saw glimpses of this as it was happening over the years and stayed away from any of the discussions and discussion boards on the subject.  A couple of times on other groups the subject came up and I talked about finding the help through the proper channels. Starting with the Mental Health, Adoption Support, their insurance and Medicaid and tried to help some parents find scarce help.

Back in 2000 I wrote a letter in the middle of the night. My thoughts about having to tell my daughter that she was going to have to go back to vary system she came from to find the mental health services she so desperately needed.  I searched and searched and found no hope or help for her.  I tried every door and found that the system was not set up to help parents who found themselves in our situation.

I found the little known secret of failed adoptions.
Adoption Disruption and Dissolution from the Child Welfare Gateway 

Some of those circumstances from lack of knowledge about what it takes and think love is enough. Sometimes it is because of often not disclosed information. Most often it is the lack of proper supports. For those who find themselves with children with severe complex needs, it is a lonely world.I know that in our own circumstances, we were not allowed to see any of the records and they did not disclose that our children were not general level of care kids. We were promised that none of the group of kids had any needs that would put other children in jeopardy as we had our own children and a medically fragile child to think about.  But we found ourselves with four of them who were in therapeutic foster care and the three seventeen page psychologicals on the kids were never shown us that they were much more needy than we were told. Never-the-less we did not give up even if had been fraud. We had made a promise.

Even more on the tragedy of custody relinquishment to garner Mental Health Services.

Custody Relinquishment from the Bazelon Center for Mental Health Law
Even biological families were forced to put their mentally ill children into the care systems to garner services. But Adoptive Families had to do it to. To return them to the systems to get services suitable to condition and often times residential treatment if one could find one.Those reports highlighted what I had learned. That systems are not equipped to handle our most complex children and families find themselves struggling to find competent help  that is hard to come by.  One has to exhaust all services and then there are few options. Hospitalizations and residential treatment are hard to come by and often will not except our seriously disturbed children.I fought hard and did not give up custody and learned to fight for my daughter and her right to family. But most families will not be as lucky as I was.

Families who have adopted from the foster care system and the worlds child caring institutions. We have no safety net when we find ourselves with children too severe to attach or too damaged to remain in the home safely.  We are vilified for not loving them enough, not caring enough, for throwing away a child. The more of these stories, the harder it is for parents to reach out for help as we are judged, juried, convicted for not loving our children enough or doing enough to help them heal from the ghosts of their pasts.  But it is much more complex than that.

We need a support system all the way from better training  and support from the adoption agencies, health and mental health care systems, child welfare, schools and communities supports.

We adoptive parents who take on these children, sometimes unknowingly are Parenting Complex Children.

Complex…

Some once told me that they are Genetically loaded (they inherit the parents genetic predisposition). There is actually a study going on to see if prenatal alcohol exposure changes genetic structures.

Many will be prenatally exposed. A parents substance abuse issues often put these children into the care of the states and countries. A new study confirms what we parents have known for awhile.
Fetal Alcohol Common in Adopted and Foster Kids   
Neurobehavioral disorder associated with prenatal alcohol exposure. They look normal but can’t do normal and normal parenting strategies do not work.

Children who face poverty, neglect and abuse can have neurocognitive issues. Their brains changed by their earlier experiences.
Neurocognitive Impacts for Children of Poverty and Neglect from the American Psychological Association.

Most will have at least some mental health issues of some sort from their trauma they have face. The majority are milder or moderate, but some can be severe. For older child adoptions we need to expect Post traumatic stress disorders. Trust issues, and Attachment Disturbances. Why wouldn’t they?
They are removed from the only people they knew, put in institutional settings, or disrupted placements.

Often kids act out their stress and those behaviors can cause multiple placements. The child also learns that nothing is permanent and if you are bad enough, you move on and you don’t need to attach and trust.

Parents have answered the call to give children homes, not just from the worlds institutions but from the foster care system in our own country. Many parents go through the trainings and say what they can and can’t deal with. But often times the problems will not appear until later when the child can’t hit their developmental milestones that it will become apparent or puberty hits.

I remembered reading early on a statistics of adoption disruptions and dissolutions.
Adoption Statistics: Disruption and Dissolution from Adoption.com.This not a new problem and these are not new numbers.

This article written long before the push to move children from foster care into adoptive homes.We when adopt the children, we make promises to care for them and help them to the best of our abilities. But for some parents, they find themselves with a child that nothing seems to help. Sometimes the more you love them, the more you try to care for them, or parent them. The worse it becomes.  Adoptive parents reach for therapists, books, strategies and anything they can grasp for and often times the worse the situation gets.  I remember the conflicting advice I got from the five different treating professionals in the differing spheres of my sibling set of 5. The advice from one conflicted with the advice of another, and learned to trust my own intuition and fire the ones that were worsening my children’s conditions.  The Reactive Attachment Therapies do not work well for kids prenatally exposed with alcohol. They actually worsen them. Then the schools with their behavior modifications that do not work with FASD and then the triangulation of the child pitting unattached people against the caregivers. It is a set up for Adoptive Parent Burn Out and a child in danger of blowing out of a home.

Parents are finding themselves having to run residential treatment facilities without any training or support. I have seen adoptive parents/kinship caregivers have to manage kids that have been released from psychiatric hospitals because they could not be managed there. Thrown out of schools for misbehavior’s and left to function solo. All the while trying to be on guard 24/7 to protect the child, the other children and even themselves from catastrophe.

The failures of the mental health system in our country for children are written.
America’s Failing Mental Health System, America’s Struggle to Find Quality Care

But for the complex children from the care system, they are stuck in a place where the care systems and mental health clash. They are always the others responsibility.  For those who bring in kids from other countries they are in a No Man’s Land and often on their own.

I have added to this piece a chart.  My favorite with sharing just how complex these children can be. Overlapping Characteristics.  I once asked a person in power in the state mental health system. Where is the evidence based practice for my children?  He didn’t answer, except with the statement you are?

What I learned is that I had to trust my intuition, leave no stone unturned, I had to fight for my daughter, but also know that I had to keep everyone safe.

Overlapping Characteristics Download PDF

But the systems of help in our country are failure based. Not preventative. The medical system can diagnose the prenatal exposures, but can help us understand the cause. The Children’s Mental Health system is not the right place for those prenatally exposed to alcohol but often can help those with the complexities of abuse and neglect issues.  But as children mirror the behaviors of others others, these children learn from their peers and those behaviors often worsen in the home. But the lack of competent support for those from the care systems is a challenge.  For my kids the Mental Health system and the groups for those kids actually worsened my kids disorders.  Knock on the door of Adoption Support and often they tell you you have to use your insurance and Medicaid first.  But that is another series of Medicaid stories about that failures for the most vulnerable of children.

But our kids have no coordinated Silo to find support. Many of the children from the care systems are often of normal intelligence, so developmental disabilities services will not help us. Mental Health services are a poor fit and the strategies do not work with children with prenatal brain injuries. Those lucky enough to present as having autistic tendencies may find services under the Autism Umbrella.

I was told to look for help in places that were not equipped to handle our needs. I was not an abusive parent, I was not a neglectful parent. I had a daughter too dangerous and damaged to live at home. I was ordered by the Community Mental Health System that I had 60 days to relinquish our daughter and to dissolve the adoption or be charged with abandonment. That document came up missing and I had thought to stow a copy hidden where no one would look for it.  Someone told me that when you go public documents burn.

I had been warned that if we abandoned my daughter in the state hospital, we would face charges and the loss of our other children, not just the adopted sibling set, but our own biological children.  The care system trumps parents say, bring this child home or possibly lose your other children, your professional licenses, and be put on the abuse and neglect registry. It is Least Restrictive Setting that is used to say that ALL children belong in the homes and then it is our fault that we are ill equipped to meet their needs.  Even when someone gets hurt, we need to go against the recommendations from the professionals that we need to have them home to attach.

If you have to place your child into foster care system, the adoptive parents often lose their adoption subsidies if they are lucky enough to have one if you adopted from the US or if you adopted internationally you will be charged with the cost of the child’s care.  I have even seen where an adoptive parent was charged and they took not only the child’s adoption subsidy but the adopted siblings subsidy as well and handed the adoptive parent the bill from the state and put liens on the parents home. The same state that adopted the child to the couple and the agency hid the records.  Adoptive parents are often charged with paying for the court fees to get help from the justice system when the Child Welfare and Mental Health Services fail. Too many adoptive parents face calling the police as the option of last resort. Followed by the knock on the door from the Child Protective Service Workers.

No wonder why parents take into desperate measures to find support, the wrong way. Because has anyone tried to Navigate the MAZE to find help for those most vulnerable of children who are the small percentages of kids whose needs are great. Some of us who find ourselves with a child with intense needs, we will get secondary trauma not just for the parent, but the siblings as well.

PTSD in Parents of Children with RADWe are held accountable for the failures of the Child Welfare, Adoption and Child Mental Health Systems, Medicaid, Insurance and Schools to have a Continuum of Care and a Safety Net.  and it is time for all of us to stand up for finding Post adoption support services and a continuum of care for the  the adoptive children and families so they can honor the promises. For those of us who have adopted from the United States Foster Care System we need not just a check, we need real help and not be judged and serviced by the child protective services the same care system that our kids came from.We need a post adoption program and laws that will protect our families from the catastrophic costs of having a child with severe issues.

We need the media to focus not just about the adoption horror stories, but real stories of real families fighting the odds to try to help very complex fragile children.  We need evidence based adoption conscious services and supports in all the service sectors and those parents will not resort to give up on their adoptive children.  And for those children who do not fit into the adoptive home, we need laws that no do penalize the family for trying to find healing for the child and for everyone involved.  It should not be seen as failure, but just another place to meet the needs of the child.

We did not give up on my daughter, or her siblings, but we did pay a price. Many an adoptive parent said that they were more traumatized not by trying to help their child.  The trauma of the lack of support and navigating the systems if often times are much more damaging than our circumstances.

Postscript: My daughter is now 28 and she still has a family to advocate on her behalf and call home to and we have gone on to adopt another little guy with Fetal Alcohol Syndrome plus a host of other problems and he is thriving. We have full disclosure, we will do whatever and find whatever it takes to give him the love and supports to thrive. But we also know that we cannot heal his prenatal brain damage but love him and nuture him through his challenges.

A followup to our story written for the North American Council for Adoptable Children in 2003

5 Heart Smart Steps for Anger Management


Five Heart Smart Steps for Anger Management

Conflict happens to everyone. 

For persons with hidden differences these conflicts can be invisible until there are so many that the person explodes. One hurt builds upon another hurt and no one sees it happening. Conflict self-care is an individual responsibility, but how can we manage it before it grows out of control especially if we deal with FASD, ADHD, SID, ASD and all those other silly D’s.

Some of the things that may cause hidden conflicts others do not see or understand:

  • When I am blamed for something I didn’t do, it is easy to immediately go on the defense because I am not able to confidently dance verbally around the reality. I don’t know what words to use to protect myself so I go off to keep the person away.
  • When someone uses a big voice instead of speaking to me with kindness, I can feel the hard or aggressive tone and when I feel that tone I am triggered. It is different coming from a woman or a man. From a man it is deeper and I may be triggered quicker because I believe at that moment they are being mean and I react to protect myself. I go into defense to defend myself and I do it without thinking I simply react. With a woman when the voice is firm or bratty, it doesn’t make my heart jump so I am not on automatic snap, but I may still be rude to give myself time to think about what just happened. 
  • When plans are quickly changed it is overwhelming and frustrating because I have worked my schedule around the situation, and navigated  to get there which can be very difficult on public transportation or relying on another person. I even have to sometimes reschedule my medication times to make an appointment work, so I can be functional at that appointment. I know people without my differences don’t understand the extreme rudeness change is for me and how it affects my life.  

1. When your heart is upside down – BREATHE first!


BREATHE – Something has turned your heart upside down… frustration, confusion, bully behaviors, overwhelming situations or just life in general. Realize emotions you may consider negative like anger and pain are not always bad.  

  • BREATHE deeply into you belly until you can hold no more air think ‘I can get through this, I can handle this, I can do this.’ (One way is to count in 7 short breaths)
  • BREATHE out your feelings of hurt or anger until you have no air left in your lungs and you need to take another breath. Repeat. (One way is to blow out 8 – 1 long breath and the 7 short breaths)
  • Do this as many times as you need to… Repeat – repeat – repeat

If breathing is not working – 

2. Place your hands together and press hard


PRESS YOUR HANDS TOGETHER HARD (like praying flat hands) AND BREATHE- Continue breathing and press your hands together hard. This is when I say “_______, give me love, peace, joy and understanding.” 
  • RAISE YOUR PRESSED HANDS ABOVE YOUR HEAD AND BREATHE  –  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say “_______, give me love, peace, joy and understanding.” 
  • RAISE YOUR PRESSED HANDS ABOVE YOUR HEAD, MAKE A BIG CIRCLE OUT AND BREATHE  –  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say “_______, give me love, peace, joy and understanding” or sometimes by this time I can simply be quiet…. 
If I am still overwhelmed – 

3. Grasp your hands together and hang on for the ride!


GRASP YOUR HANDS TOGETHER (like folded praying hands) AND HOLD ON TIGHT NOW  BREATHE- Continue breathing and grasp your hands together hard. This is when I say “_______, give me love, peace, joy and understanding. Against such things there is no law.” Try to relax your hands as you breathe.

  • RAISE YOUR GRASPED HANDS ABOVE YOUR HEAD AND BREATHE  –  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say “_______, give me love, peace, joy and understanding. Against such things there is no law.” Try to relax your hands as you breathe.
  • RAISE YOUR GRASPED HANDS ABOVE YOUR HEAD, MAKE A BIG CIRCLE OUT AND BREATHE  –  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say “_______, give me love, peace, joy and understanding. Against such things there is no law.” Try to relax your hands as you breathe. Usually by this time I am ready for a walk or thinking time. 
Open your new heart – 

4. From your praying or grasped hands open your hands into a new heart – now right side up!


  • TAKE A MOMENT FOR YOURSELF – Give yourself a pat on the back for stepping through another hard place. Go for a walk, listen to music that is peaceful, look at something in nature that is beautiful to you (clouds, flowers, trees, animals). 

Take the next step – 

5. Reach out to another person and share your new wisdom.  

  • IF YOU LEARNED SOMETHING NEW from this experience of riding your anger safely through a cycle let someone you love know what happened, how you managed it, what you plan to do again and what the person can do to help you navigate this if needed. 

  Do the best that you can.

 Each one of us can reach another in kindness and love. 

Do something for another today.


Special thank you to POWER PEOPLE
Sam, Liz and David – for their counsel in the development of this program. 
Please share in fullness with our connections –  2013 Better Endings New Beginnings

Need to encourage your place of faith to have a
special needs inclusive ministryRead more

#3 Days To FASDay – Dog takes a stand on fetal alcohol

If a dog can do it so can we!

Each one of us can reach a new person this coming year. For those of us who live with the realities of FASD, it is our job to share this knowledge. 

Last year we asked…

Could we use the woof of a dog to build FASD awareness?

So Chancer, Iyal Winokur’s service dog woofed in …

  • The New York Times (February 2012) Wonder Dog – A golden retriever reaches a raging boy by Melissa Fay Greene
  • Readers Digest Canada (May 2012-Pages 84-91) Creature Comfort – A golden retriever did what the Winokur family could not—he befriended an soothed their raging son by Melissa Fay Greene
  • Guidepost (September 2012)  A Dog’s Devotion Brings Healing— She had no idea how severe her adopted son’s problems would be—or what form the answer to her prayers would take. By Donnie Kanter Winokur, Roswell, Georgia
  • Entro Magazine (June 2012-Pages 24-25) Building Bridges to Success for Children Living with Fetal Alcohol Spectrum Disorders
  • Adoption Today (October 2012) shhhh…. it’s coming! 
  • Another potential BIG SURPRISE – keep posted to Silent Voices Blog and be the first to know!

How can you take a stand…
  • Miss Illinois talked about FASD when she represented Southern Illinois – she is an expert from the inside out
  • Karl Kulp told his classmates at his 50th Class Reunion – “The most important thing I have done in my life, that I am the most proud – is raising my daughter who lives with the daily challenges of fetal alcohol into an interdependent adulthood.” 

Stand up in your congregation this weekend! And share your story!


If we want to create an “REAL” Economic Stimulus Package – now is the time to begin promoting “Building Better Baby Brains” by Raising the Standard for the Future – Alcohol and Babies don’t mix and add to the future cost of education, medical, community and judicial services.
  • Join our virtual Million Mind March to give One Million Babies in the next year the opportunity to develop healthy minds

Participate in a Local Radio Show and Get Your Events Talked About
Call your local radio show and see if you can get on a program to talk about FASD during the next 60 days. You may just open up some minds and save a few baby brain cells.
Visit:

Step out, speak out, get out and make some friendly noise to build awareness of FASD – fetal alcohol spectrum disorders.

#4 Days To FASDay – FREE STUFF Be a poster poster

Become a Poster Poster!

©http://www.fasstar.com/

Get your school involved this month… involve your health teachers… high schoolers give a presentations to your elementary and middle schools –

Print out some FREE – FASD Awareness posters and hang them up on local bulletin boards, at the store, the laundromat, churches, universities, etc. You might even get your local schools to post them.

Little One” everybody’s favorite poster

NOFAS Posters and Brochures

If you print these out yourself on photo paper at “best” resolution on your color printer they will have a high quality appearance. You can have large posters printed for just a few dollars at your local print or copy shop. Even one may be seen by hundreds of people.

PURCHASE A SET OF BOOKS FOR YOUR ELEMENTARY SCHOOL TO HELP EXPLAIN FETAL ALCOHOL SPECTRUM DISORDERS TO STUDENTS IN A KIND AND GENTLE WAY – Prevent Bully Behaviors against children with FASD this school years.


Click book to purchase and use $3.00 coupon code Direct links provided for discount – Just add coupon code JZLZLVT2 to order Nuzzle, My Invisible World, Braided Cord, Whitest Wall or Our FAScinating Journey – you can simply click special link for each book provided below. Any reviews or comments on our books are appreciated. Happy September 9 – for larger quantity please message me and I can get you a deal.

PLUS THIS IS FREE E-CURRICULUM FOR Elementary Schools From Chancer!!!!!



Speaking, workshops or wholesale books contact: www.betterendings.org or jodeekulp@gmail.com

$3.00 Gift for each book from the Kulp and Winokur Families to build awareness this month. Additional or classroom quantities please contact us:

NEW! 3rd Revision Our FAScinating Journey -Keys to Brain Potential Along the Path of Prenatal Brain Injury – (2012)https://www.createspace.com/3579462
The Whitest Wall (2012) – A Mystery novel
Braided Cord (2010) – Liz’s adult transition with FASD

#8 Days To FASDay – Write a letter to the first lady

How to Write a Letter to 

First Lady Michelle Obama


Dear First Lady Obama
let me tell you about FASD

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 Group
www.stonesoupgroup.org

If you would like to write a letter to First Lady Michelle Obama there are certain steps you need to follow. While you may feel comfortable writing letters to your friends and family this letter needs to be formal and concise. Please follow these steps to correctly send the First Lady a letter.

________________________________

Dear First Lady Michelle Obama…

Let me tell you about FASD

International FASD Awareness Day Letter Writing Campaign

Did you know that First Lady 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 First Lady prior to 9/9 then the probability of her opening even one letter regarding FASD is incredible.
The more letters, the higher the probability that all ten letters she reads will be written by those affected by FASD.

  • Are you a parent of a child with FASD, are you an adult with FASD?
  • Does your 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 our First Lady regarding the most prevalent of all birth defects: Fetal Alcohol Spectrum Disorders.

Join us in asking our First Lady to ring a bell at 9:09 am on September 9, 2009 to recognize the importance of Nine Months of an Alcohol Free Pregnancy.

Tell your story of how Fetal Alcohol Spectrum Disorders have affected yourself and those you love.

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

Send First Lady Obama an email by filling out the form at:
http://www.whitehouse.gov/contact

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 by FASD
* 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

#9 Days To FASDay – Speak Out on Fetal Alcohol

Prepare to give a speech

This is the first time Liz and I stepped out years ago at the 1st International FASDay –

You can do it too!

Here is my speech – feel free to use mine and adapt to your community.

Today is a day… International FAS Awareness Day — 9.9.99 @ 9:09
Jodee Kulp, Parent Keynote, Federal Courthouse Plaza, 12:30 pm — Minneapolis, Minnesota

Thank you for being part of International FAS Awareness Day 9 9 99.
The Bells have rung out in Minnesota and are continuing their journey around the globe. We were the 18th time zone in the International Bell Concordance and didn’t they sound beautiful! Thank you to the citizens of Minnesota and all those involved with prenatal exposure for the mighty effort they put out to make this day happen.

It is my privilege to speak on behalf of all the parents who love and live with children exposed to alcohol before birth. It is my privilege to speak for those who live daily with the primary and secondary issues erupting from this exposure.

Today is a day of awareness.
We have stripped back the dark covering and let the sun shine in. We have come together as a world family, united in the cause of making a difference and hope this first “One Magic Moment” will begin to change lives.

Today is a day of awareness.
Alcohol is devastating, and most devastating to the weakest and most vulnerable in our society — the unborn child. Alcohol exposure is the leading known cause of mental retardation in the western world – US, Canada, Europe and Australia.

In the United States 10,657 babies are born daily (1999 US numbers are listed below)

  • . . . 3 will have Muscular Dystrophy
  • . . . 4 will have Cystic Fibrosis
  • . . . 4 will have Spina Bifida
  • . . . 4 will be infected with HIV
  • . . . 10 of these babies will have Downs Syndrome.

Researcher and fund-raisers are working for these children.

But — are you ready for the figures —

  • . . . 20 babies will be born with FAS
  • . . . these children will have visible facial and other physical deformities
  • . . . they are the lucky ones

People will see with the eyes, understand and help will be provided. These physical manifestations are not caused by MORE drinking but simply because of the day in gestation the pregnant mother chose to drink.

Today is a day of awareness.
NOW — are you really ready for the tough issue

  • . . . 100 babies will be born with Fetal Alcohol Effects
  • . . . these children’s deformities will be hidden within their bodies, in their brains and organs.
  • Most will go undiagnosed.
  • Most will live a life with little help with behaviors misjudged and struggling with learning and emotional issues.

Today is a day of knowledge.
Brain damage is non-reversible and a permanent condition that an individual must live with for the rest of their life. The person with prenatal alcohol exposure does not have the choice of NOT being impaired, yet has the responsibility of learning to live and to fit into a society that neither tolerates nor understands their impulsive behaviors.

Today is a day of knowledge.
Any one of us could become the parent of a prenatally exposed infant. FAS is no respector of persons or culture. It crosses economic and racial lines. The results of a very recent survey of over 100,000 women discovered that women in households of greater than $50,000 income, women who are college educated, unmarried women and female students have a higher than average incidence of drinking during pregnancy. I ask that no fingers be pointed at any person for this affliction. I ask for forgiveness from the past. I ask for a resolution of personal responsibility from this day forward for even one child to be saved.

Today is a day of knowledge.
A can of beer, a glass of wine, a shot of liquor and a wine cooler all contain about 1/2 oz. of absolute alcohol. If a woman consumes 2 drinks in one hour, her baby could have a blood alcohol content higher than the mother could. FAS is 100% preventable. If a woman becomes pregnant, she shouldn’t drink. It’s that simple. There is no known safe amount of alcohol for a pregnant woman. When a woman drinks, her baby drinks, because alcohol passes directly through the placenta to the baby.

Today is a day of hope.
When we join together we can achieve a better tomorrow. The knowledge each of us holds can provide the tiny pieces of a large puzzle to help contribute to the success and happiness of those afflicted. Together we can provide knowledge, wisdom, support and encouragement to women who are planning to conceive, pregnant or breastfeeding a child. This we can all do with love.

Today is a day of hope.
Solutions require us to work together. Doctors, researchers and nutritionists around the world can share their discoveries and treatments that are already making a difference. Mental health professionals, educators and parents can join as a team to reach, teach and train these young people, sharing ideas from around the globe.

Today is a day of hope.
We must open our eyes and our ears. We must shift our focus and understand the inner world of living with prenatal exposure. We must begin to see these children differently, and begin to build the bridge of understanding. Diane Malbin a tireless advocate provides the clues by changing from:

  • “Won’t to can’t”
  • “Bad to frustrated”
  • “Lazy to tries hard”
  • “Refuses to sit still to overstimulated”
  • ‘”Fussy and demanding to oversensitive”
  • “Trying to make me mad to can’t remember”
  • “Resisting to doesn’t get it”
  • “Doesn’t try to tired of failing.”
  • “Doesn’t get the obvious to needs many reteachings.”

Yes it is hard to be the parent of an FAS child.
Yes it is hard to be the teacher of an FAS child.
But have you tried to be the FAS child!

Our adopted daughter Liz exhibits Fetal Alcohol Effects. Our family has grown deeply because of it. The primary issues of hypersensitivity, overstimulation, night terrors and learning disabilities have challenged us.
We have struggled with impulsivity, low self-esteem, anger and frustration.
We are determined to prevent the secondary issues from occurring – violence, suicide, alcohol abuse, poverty, homelessness, delinquency, incarceration, and early pregnancy.
We have discovered that proper nutrition, added nutrients and sleep make an incredible difference and allow Liz to function very well.
We have discovered she is happiest when provided clear boundaries and concrete communication.
We have discovered her learning styles and teach everything in multiple modalities….see it, hear it, do it. With a strong emphasis on doing it.

I am proud Liz is my daughter and she is doing wonderfully. This growth did not come easily for her. She is a fighter and has climbed many mountains. In a quiet one-on-one teaching arrangement she has been able to gain 5 years in reading, 7 years in spelling and is currently at age level in mathematics. Learning any new material has been very difficult for her. We have been building one very tiny step at a time, without moving on until mastery has taken place and then often reteaching areas a number of times.
Though her brain still works compartmentally we are beginning to see transfer of some information and together we are learning how to teach and how to learn. She and I are on the same team. By “compartmentally” I mean, for example, that when are doing spelling she can spell at the 9th grade level and when we are learning to write she can spell at the 6th grade level. The transfer of information is very difficult for her.
Two weeks ago, my daughter Liz and I bought a peck of cucumbers to make into pickles. Our science classes are very hands on and we were going to study sterilization and Louis Pasteur. We washed and carefully brushed each cucumber so they were perfectly clean – they were beautiful. Then we soaked the cucumbers overnight in a 5% salt solution. In the morning the cucumbers looked the same, but no longer tasted the same. We cut up garlic and dill and red peppers, and boiled vinegar, salt and water with pickling spices. We packed sterilized jars tightly with our beautiful bright green cucumbers and poured on the brine. Then we sealed the jars and boiled them 20 minutes in a hot water bath. When we lifted the jars out of the water a dull green pickle had replaced the bright green cucumbers…
And I thought THIS IS WHAT we have done to these children.

Today is a day of advancement. Growing up with FAS is a community process and it takes a united community to raise these children. It took one dream and two people to create the vision for today — Bonnie Buxton and Teressa Kellerman.
They believed:
‘The oscillation of butterfly wings in Brazil may set off storms in Texas.’
And what a storm they set off. They mobilized and motivated individuals from around the globe. From New Zealand to Alaska people have united. The Internet has connected a previously silent world of creative, intelligent and hardworking individuals willing to lay down differences for a common cause of helping children and adults living with FAS
Where do we go from here?…
These children are teachable, lovable, creative and energetic but they do not learn like other children. They need to be taught things other children just seem to simply know. We need to discover the resources already available and we have powerful resources in our backyards — birth parents, adoptive parents and foster parents who are living, loving and growing together 24 hours a day with prenatal exposure. These families have been creative in developing processes that work to help their children succeed and find happiness in a world they struggle in.

I challenge each of you to make a difference.

  • Tell people this is an important issue.
  • Join with NOFAS www.nofas.org and share ideas and information.
  • Visit our website at http://www.betterendings.org/
  • Email your successful ideas to us. We will publish them.
  • Encourage women to remain alcohol and drug free during pregnancy.
  • Write to your congressman, senators, schools, community leaders and medical professionals and let them know “We’re Tired of Our Children Being Pickled.”

Today is the day to make a difference.
My words on this 1st hopefully of many future International FASDays are dedicated to my wonderful Liz. May we begin this difference in changing this world for others together.

Speak Out in Your Community and open the minds of others to Help Raise the Standard to Build Better Baby Brains
Join the International Virtual Million Mind March

If we want to create an “REAL” Economic Stimulus Package – now is the time to begin promoting “Building Better Baby Brains” by Raising the Standard for the Future – Alcohol and Babies don’t mix and add to the future cost of education, medical, community and judicial services.
  • Join our virtual Million Mind March to give One Million Babies in the next year the opportunity to develop healthy minds
Participate in a Local Radio Show and Get Your Events Talked About
Call your local radio show and see if you can get on a program to talk about FASD during the next 60 days. You may just open up some minds and save a few baby brain cells.
Visit:
Step out, speak out, get out and make some friendly noise to build awareness of FASD – fetal alcohol spectrum disorders.
Tomorrow I will share the first speech I fearfully spoke on 09.09.99 at the 1st Annual FASDay – sadly the same message still needs to be heard.
Enjoy coming up with GREAT ideas – we’d love to hear from you!

#11 Days To FASDay – Tie Some Knots

Let’s Knot to be Silent
INSTRUCTIONS TO TIE YOUR OWN FASKnots

By Bonnie Buxton,
author Damaged Angels
co-founder International FASDay
Re-printed from December ICEBERG 2008

In January of 1999, while digging out from a Toronto snowstorm, my husband Brian Philcox and I realized that September 9, 1999 (9-9-99), would present an opportunity to inform the world that during the nine months of pregnancy, alcohol is dangerous to the baby.

Within 24 hours, Teresa Kellerman of Tucson, Arizona, had contributed her creativity and Internet genius by encouraging volunteers in seven countries and 11 time zones to participate in the first International FAS Awareness Day.

Because every ribbon colour had been taken by other causes, Brian and I spent several hours developing the FASKnot symbol in honor of the first book about Fetal Alcohol Syndrome, Michael Dorris’s “The Broken Cord.”

Ten years later, the events continue and now we challenge FASD advocates to take advantage of 2009 to build awareness all year long, particularly on 09-09-09. This year in Canada, FASDay events included a major conference, some candlelight vigils, “mocktail” competitions, breakfasts, luncheons, a play, and one brave woman with ARND speaking out for the first time to a group of university students. Many of these events brought media attention to FASD, building awareness in the community.

Join the movement to Build Better Baby Brains Let’s Raise the Standard

Jodee

#22 Days To FASDay – What One Person Can Do?

What can Only One person do?

From Deb Fjeld – a mom of four children with multiple complex issues and webweaver of www.toolboxparent.com

I was feeling frustrated the other day when I was listening to myself complain about the recent funding cuts going through our state. I realized that I have become so obsessed with trying to find grant moneys for programs that I have lost my focus like I had lost my paying job.

I had the “I’m Only One Person” Syndrome.
I felt that if I don’t find grant money for programs, that nothing good can happen and I can’t make a difference.

Then, I re-framed my thoughts. (My favorite thing to do next rationalization)

What can one person do to help a family who is struggling?

One person can (without a lot of money or no money which we sometime have):

  • be a mentor for a child
  • offer support to another parent who is struggling
  • create a blog to support other parents
  • phone a friend who has tough kids and say I appreciate what you do
  • operate a web site to help others
  • bring a meal to a sick friend
  • offer respite for a family who needs a break (even an hour makes a difference!)
  • pray for another who needs help
  • join a list serve and share ideas
  • call a church, school, government center to ring some bells on 09.09
  • get a little assembly together on your county courthouse on 09.09 to talk about FASD
  • hold a pregnant pause event at a local restaurant, hotel or bar
  • send an encouraging email to one, or all on your email list
  • write a book!
  • invite a few girlfriends out for coffee and relax!
  • read our articles on http://www.toolboxparent.com/
  • join a disccussion, ask a question, post a great idea to help professionals and parents of complex kids and intense adults at http://toolboxparent.ning.com/
  • write a review for an author who raises tough kids – your input really counts
  • HAVE FUN FUN FUN – pay attention to the little miracles every day
  • start a 501c3 (then you add a few board members and maybe get a grant)

These are things that don’t need a grant.
These are things that make an actual difference in another’s life, without costing any money.

I have noticed, though, that I receive much more in return than the effort I gave out.

What else can one person do to help another?? Any ideas we would love your comments.

Deb Fjeld and Jodee Kulp

Look what three parents with a single idea pulled off ten years ag0 and it is still continuing to ring our warnings.

FASDay 1999 began in Auckland, New Zealand, where “Minute of Reflection” bells rang at 9:09 a.m., at Mt. Albert Methodist church. Then it moved to Adelaide, Australia, and then to South Africa, where at 9:09 a.m., Cape Town volunteers gathered to hear the War Memorial Carillon that rang when Nelson Mandela was released from prison. Volunteers in Italy, Germany and Sweden held events — and then FAS Day crossed the Atlantic. Volunteers staged events and bells and carillons rang across Canada and the U.S. The westernmost activity was the community breakfast on the tiny island of Kitkatla, B.C., near the Queen Charlotte Islands, where the village bell rang at 9:09 a.m. followed by prayers in the native tongue by village elders. We missed a few international time zones.

We did it all on $100 in donations, plus thousands of hours of volunteer labor.

It was a labor of love and passionate commitment. We generated as much media attention as a million-dollar public relations campaign, and we made many new friends and supporters in the process. Many women of childbearing age learned for the first time that no amount of alcohol in pregnancy is safe.

All of us knew that in one magic minute, we really did begin to change the world.

Yeah, but…
What can one person do to fight FASD?”

You’d be surprised — if he or she is working with a world community of people equally committed to eliminating this tragic and totally preventable disorder!

#26 Days To FASDay – Free FASD videos


Special thank you to our New York team of Advocates who prepared this video and to all the children, teens and adults with Fetal Alcohol Spectrum Disorders (FASD) who offered their pictures to put a FACE on FAS.

Help us “Raise The Standard” for our next generation!

Person First Language from MOFAS – 
this will help you promote awareness honorably to all

Not only must we walk the walk – we must talk the talk.
Yes, person first language takes more space to write and more time to say, but the end result allows for respect in honoring the strengths and abilities of another person.

Watch the MOFAS tutorial and give it a go for all your FASD presentations.



Use Teresa Kellerman’s video

in your presentations on Fetal Alcohol to build awareness.
This is worth watching – very short

Want the facts about alcohol use during pregnancy?
Here they are.
All sources are cited at end of video.
More information available here: www.come-over.to/FASCRC

More videos you can use from YouTube
(search FASD or fetal alcohol on You Tube to review – NOFAS has an excellent new series)




Recovering Hope is an intimate and evocative video about the mothers and families of children who are affected by Fetal Alcohol Spectrum Disorders (FASD). The video, created for viewing by women in recovery and their counselors, is divided into to half-hour episodes to allow time for discussion within a treatment session.

Eight women tell poignant, memorable stories. They speak out about how alcohol use during pregnancy affected their children, how they are learning effective new ways to parent, and how they are recovering hope for the future. Six researchers and clinicians support these stories by explaining the physical, mental, behavioral and learning disabilities associated with FASD and discussing evaluation and intervention services

Need a speaker? Check out the http://www.nofas.org/ Resource Directory for US speakers

Online Manual – www.fasday.com
Seminar – Or try our easy, effective, exciting 1½ hour program that walks you
 through the morning of Sept.9: http://www.come-over.to/FASDAY/ABCDEFG/ 
(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 www.toolboxparent.com
Need ideas for adults living with challenges of FASD visit www.braidedcord.net
Need information on fetal alcohol spectrum disorders visit www.betterendings.org
Interested in service dog for FASD visit www.thechancerchronicles.com