Monday, December 24, 2012

And so this is Christmas living with the challenges as a adult with fetal alcohol

And so this is Christmas:

We're down to the home stretch now, only 2 more sleeps to Christmas. 


My son has gone to spend the holiday with his mom, because as every body knows - nobody NOBODY does Christmas like MOM! :) That leaves me and two cats to have fun ourselves. And we do!
They get presents and some special food too!

There are no decorations at my home, no sounds of Christmas choirs or jingle bells. While there are a few paintings and prints in the living room, my own room is bare white walls, save for one small picture of my daughter. I hide the modems because the blinking lights tend to throw me off after a while. And between the computer, the cable box and the telephone we have a whole lot of blinking lights all over the place. So, no need for Christmas lights as far as I'm concerned! LOL! It sounds bleak to some, but to those of us living with FASD it feels safe and comfortable. There are times when we just need a break from all the lights and sounds and my home is where I can do this.

Being a safe place for me sometimes means the exact opposite to my apartment though... it's the place I can let down my guard and show my frustration at the world, or myself in that world. It's where I giggle like a little kid while wrapped up in a snuggly watching cartoons, or at this time of year It's A Wonderful Life. It's the place I can stop and try to figure out the world outside. It's the place I melt down. :( It's also the place I build myself back up again. :)

Through the years I've had to learn to become quite a handy man, thanks to this "thing" I've fought all my life. I can mend a door, change a window, patch a hole and paint like there's no tomorrow. Sometimes though, I don't repair these things... I leave them as a reminder of what can come to pass. People see this damage and go "oh that's terrible" and all that... but what they don't know is that same damage is forever imprinted on my soul. I'm not proud of that damage, it's not something I ever wanted to be responsible for... no it is a shame I have to bear. And not forget what can happen IF I allow myself to get into that frame of mind. Understanding FASD has made me understand just how very important self soothing is to an adult like me. There is no one else to do it, and I can't be melting down or shooting off every time some thing does not go to my liking. Having a person I can trust as my external brain helps me understand many things, but some times I am the only one who can prevent or at least lessen these things from happening. And that is just how it should be. If I want to be independent then I have no choice but to accept and deal with my own actions. "I am the Captain of my fate; I am the Master of my Soul". Understanding that it is because of the FASD that I have a hard time regulating myself emotionally has given me the tools to "fight the beast". Knowing and understanding has made all the difference.

I'm so much better than I used to be in this area, but sometimes I still kick a door jamb, or suddenly let loose with some loud expletive... but it is getting better and better. I never thought there was any way to fight this, but I am learning that knowledge really IS power. I CAN beat this thing and I will.
Taking care of myself... eating, sleeping and that sort of thing and a good amount of physical exercise also help to no end.

It is reactive anger and I work at stopping the reaction that causes it to spill out into the world. No one can see my confusion and pain, nor can they see my frustration. I get frustrated that I feel like this, and that leads to added frustration because I feel frustrated for feeling frustrated. Make sense? No... but that's what it's like... sometimes it's a loop I get stuck in. Fun, huh?

So, this Christmas don't forget how all these sensations and emotions can give us need for some quiet time, for a place we can just relax for a bit. I have to hand it to a great friend and her family... they invite me for Christmas and don't bat an eye if I suddenly have to go outside for a walk, or stand instead of sit, or walk from room to room... or just sit quietly. I really enjoy being able to share the festive season with them all.

Everyone I hope you all have a Wonderful Christmas time... no matter your beliefs or values, we could use more of this "Peace on Earth" stuff!

And that is my wish for each and every one of you this year-

****************P E A C E*****************

:) RJ - "Flying with Broken Wings" reprinted with permission from Facebook

We are excited to include RJ in our website of experts after the first of the year 
www.braidedcord.net

Saturday, December 22, 2012

FREE download for the holidays if you're out of money - give freely

 Better Endings New Beginnings Offers The Whitest Wall by Jodee Kulp

FREE FOR CHRISTMAS 

Regular $9.99 on Kindle

Looking for a gift and no money left...FREE kindle download from Dec 22-26

"Winner 2012 USA Books Award" Best Young Adult Fiction
"Winner Mom's Choice Gold Award" Best Young Adult Fiction
"Winner Mom's Choice Gold Award" Best Adult Fiction

"This book should be read if every high school classroom in America!"

In a season of hurting, understanding differences in each other may be the bridge of healing and stopping future violence.


BOOK REVIEW
“Kulp has created a new third-person Catcher in the Rye”
– Lyelle Palmer, Ph.D., Special Education Professor Emeritus, Winona State University, Minnesota.

“Jodee Kulp’s beautifully drawn characters will touch your heart, mind and soul.”
– bestselling author, Diane Chamberlain, Before The Storm

The Whitest Wall has the ability to change the perception of how we view others, treat others and understand others. Learning how to deal with
brain injuries, neurodevelopmental therapies and living with a neurologic brain condition, is life threatening for many. Without the proper support, understanding or human connection, these injured beings fall from everyday life. Sometimes these injuries are not always heard or seen and people live in a silent world of pain. Kulp’s novel, "The Whitest Wall", opens the door to the silence and screams to promote insight.

Kulp writes her novel with a sensitivity that speaks to her personal experiences with Fetal Alcohol Spectrum Disorders (FASDs). She moves her characters freely and easily through her story giving them color and value so that readers are able to connect with them. This connection is what she uses as her learning tool. Her boomerang effect is that she teaches others about the nature of living with FASDs—she educates her readers on living with a neurological brain disorder.

"The Whitest Wall", is meant to inspire conversation about FASDs. It is a novel that uses fiction as a vehicle for public education. Kulp interweaves her characters, she builds upon truth, sprinkles on fright and reality for flavor and delivers a fascinating story that will touch the hearts of everyone that reads "The Whitest Wall".

— Sara Hassler, Midwest Book Review

Wednesday, December 5, 2012

FASD Think Tank - Premiers Blog with Holiday Strategies.


Enjoy our first FASD Think Tank article
  


to help families 
live, laugh and love
 throughout the holidays. 
May your celebrations be filled 
with love and peace. 

Jodee, Liz and Karl Kulp

Monday, November 26, 2012

Dollar Store Delights in Holiday Savings

Xmas By the case can make a difference.

If you have a company party, association or church event - consider saving money by buying products from Dollar Tree by the case.

Check out their online store --- to save running into crowds with children that get overwhelmed.

Don't forget to take time for yourselves. Capture memory moments with the little ones. They grow too fast and even though it behavior may seem impossible, someday you will look back and chuckle.

Jodee and Liz Kulp




Friday, November 16, 2012

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

Monday, November 5, 2012

A movie? Broken hearts, threads of opportunity, and fur-covered love


Fur-covered love inspires and encourages; will be a movie! Who’s gonna play me?

Friends from Roswell who faced insurmountable odds were blessed with a miracle service dog. First he writes a book; now he stars in a movie! Here’s the story of a service dog whose narrative is being made into a movie – a movie about a boy who lives with fetal alcohol syndrome and a Golden Retriever who gets another chance at love, with a family desperate for HIS special kind of help.

He got a second chance at love as a service dog for a family desperate for help. Now their story is being made into a MOVIE!

Too cool: 
A service dog brings calm to a family torn apart by fetal alcohol syndrome. Writes book about it; movie’s in the works! Think he knows?

This is a story of broken hearts, Titanic alcohol damage, and second chances. It is a story I have been blessed to help unfold over the last six years; a story that joyfully, and brilliantly, is becoming very well known, despite its being started by epic unraveling thousands of miles away.

A little background: an eternal optimistic opportunist, I see 50 ways that something will work where most sane folks only see downside. Where others see a single thread, I see entire tapestries. It is a blessing and a curse.

I needed a thread or two back in 2006 when I was working on a fundraising race to raise awareness for fetal alcohol spectrum disorders (FASDs), an umbrella term used to describe the range of effects that can occur to an individual whose mother consumed alcohol while pregnant. The most severe form of FASD is called fetal alcohol syndrome (FAS). FASD is not “a warm and fuzzy”; people do not get all whoopty-do about it. Most would rather NEVER hear about it, much less tell our sisters they can’t have a glass of wine for nine months. So when I heard about a particularly enthusiastic participant in the race, I was eager to meet her.

So, I met Donnie Winokur, a wisp of a woman with intense brown eyes and wildcat mother energy; that “I-will-fight-to- the-death-for-my-children-and-kick-your-butt-from-the-grave” urgency that I, as a long-time single mom, had run on for years.

Donnie’s urgency was about learning as much as she could, and connecting with as many people as possible, to figure out what to do for a precious little boy who was in a world of hurt, hurt that was hurting everyone in his world.

To purchase Nuzzle
visit www.thechancerchronicles.com 
The little boy was her son, a dream-come-true who’d been adopted, like his sister, from an orphanage in Russia, on what was a kind of second honeymoon for Donnie and her husband, Rabbi Harvey Winokur. “We didn’t try to get pregnant for long, opting instead, since we were older and this was the second marriage for both of us, to start the adoption process not long after we got married,” she said.

To cut to the chase here, Donnie and Harvey’s son and daughter, adopted in Russia and brought home to Roswell, GA in 1999, made them an instant family. The daughter developed beautifully, and today, at 14, is, physically and intellectually so much like her adoptive mother it is as though their souls were roommates in heaven for a million years before they were both made human.

The dream-come-true story with the little boy, however, started crumbling about the time he turned three, when epic meltdowns, mood swings, and rages grew with intensity as the little boy grew in size and strength.

After many consults with many doctors, the truth unraveled in the form of a “broken” umbilical cord. You see, the boy’s Russian birth mother might have been an alcoholic. Or not. Or she might not have known she was pregnant when she drank alcohol. Whatever the case, she’d had enough to drink at some point during her pregnancy with this precious child, that his brain had been hurt badly. Very badly. The very cord that gave him life also delivered deathly alcohol to his developing brain, affecting, in particular, the parts of his brain that regulate mood, emotions, memory, and the ability to communicate, discern, and deal with “no.”

I met a desperate Donnie Winokur a couple of years into her sometimes frantic search to learn about her son’s FAS, and to find anyone and everyone who might be able to help keep this family, knit together from oceans apart, from falling apart.

She was an enthusiastic volunteer. And opportunist that I was, I saw in her pain - a face for this cause.  She became, once some trust was established, a willing accomplice. She, too, saw tapestries where others saw threads.

I asked for an interview. She let me write her story, using her talents as a journalist to help edit it, and her wildcat mom energy to be sure I told it tenderly.

I asked to feature her family in a video. She had a persuasive dialogue with the reluctant rabbi, who ultimately let us film in the synagogue.

I asked her to be on a fundraising committee. She did it.

I asked her to give me input on a book I was writing about stopping the cycles of addiction and abuse, my way of using my pain to help myself and others.  We cried. We laughed. Our friendship deepened.

I asked if I could write a fundraising letter about her story. We made money on the letter and gathered new advocates for our cause.

She told me she wanted to get a dog to help her son, a dog that would be the first service dog ever to help a child with FAS by sensing an immanent outburst and using its love to help calm the child in ways no human can. I told her I thought it was a great idea. She told me her husband was dead-set against it. I told her, from experience, that mothers do rabies-crazy things because we are so in love with our children, and to listen to her gut.

She and her precious father and children brought home fur-covered love – a rescued golden retriever named “Chancer,” because hers was his second family; his second chance at love – that helped her son and became the rabbi’s best friend.

We did another video. The CDC did a video about her family and their experience with FASD in hopes of raising awareness of the fact there is no safe amount of alcohol, or safe time to drink if you are pregnant or could be pregnant.

We had awareness-building and fundraising schemes, dreams, and roadblocks that, as we climbed over them, made us stronger. And a little tired. After all, we’d hit our 50s together.

She was working on three books and we were both run ragged by children and traffic and board meetings and life and events and she decided to put her focus into the books. We stayed in touch, with emails and phone calls and rushed lunches or coffees and even a rare girls’ night out, just two moms and a hot dog.

And now, six years from our first meeting, her story has been told in an incredible award-winning book by her daughter. And in a second book, also published by Better Endings New Beginnings, that has garnered international awards and is the story of, and “written by,” the dog. And now in an epic feature spread in nothing less than the Sunday’s New York Times Magazine(2.5.12), written by a best-selling author who has woven this story and all its intricacies and miracles so beautifully, that I firmly believe there is a thread-for-thread matching tapestry of it hanging in heaven.

I invite you to get a second cup of coffee or tea and read this story (link below). Savor every word of it because you will want to read more. And more. And you will want, I believe, to see it told on a big screen. I know I do.  

Donnie do what she is so very, very good at doing: making sense of her family’s pain by using her experience, strength, and unfailing optimism to help others. 

UPDATE AS OF 11.5.12 – Chancer’s story WILL become a movie! It is being written by Writer/Co-Producer Karen Hall, who’s written for some of the most well-known TV shows of the last 30 years and the legendary movie “The Betty Ford Story”, and brought to the screen by Emmy Award winning director Martha Cotton .  Dreams are coming true. I am just wondering who’ll play ME in the movie. J



http://www.nytimes.com/2012/02/05/magazine/wonder-dog.html?pagewanted=all Wonder Dog - A golden retriever was the only thing that could reach a raging, disconnected boy. - by Melissa Fay Greene
  
http://www.thechancerchronicles.com/invisible.html - My Invisible World - life with my brother, his disability and his service dog by Morasha Winokur

http://www.thechancerchronicles.com/nuzzle.html -  Nuzzle –love between a boy and his service dog by Donnie Winokur

http://www.thechancerchronicles.com/index.html - Website with links to other publications, information, and opportunities about Donnie Winokur, her family, and Chancer, the "wonder dog."


Carey Sipp's first book, The TurnAround Mom – How an Abuse and Addiction Survivor Stopped the Toxic Cycle for Her Family, and How You Can, Too, guides fellow “children of chaos” to create the kind of sane and loving home life that helps prevent next-generation addiction and abuse. Her book is available at Amazon.com http://www.amazon.com/TurnAround-Mom-Addiction-Survivor-Family--/dp/0757305962/ref=sr_1_1?ie=UTF8&qid=1317756315&sr=8-1

  
Used with permission of  ©2012 ShareWIK Media Group, LLC 

Sunday, September 9, 2012

FASDay - TODAY IS THE DAY!!!!!

Can't do anything ---- Sure you can!
Send this message on your mobile

TEXT TEN FOR FASD DAY
This message will save a baby's life!!!
Alcohol use during pregnancy can cause brain damage, birth defects, premature birth, and death.
WWW.BABYBORNFREE.
COM
Prevent Fetal Alcohol Spectrum Disorders -
Pass this on to 10 people.

And if you can't do that "Each one can reach one" tell one other person about FASD.

Saturday, September 8, 2012

#1 Day to FASDAY - Join the Ringtone Rally

FASD Day - Ringtone Rally!

From the Incredible Thinktank 

of Teresa Kellerman


Okay, everyone, here's my idea for FASD Day 2012:

We are going to ring people's mobile phones with a FASD Day text message. Send the message (my next email) to as many people as you want.

What, you don't text? Me neither. So I will be sending this message by email, and I will put it on my facebook page. Look for me, my facebook id is... fasstar (of course!) www.facebook.com/fasstar

The web link on the text message goes to www.babybornfree.com. This is newly designed especially for viewing on mobile devices. There are links there to an awareness video (from NOFAS), a slide show (from our friends in NY), the FASDay site, and my main info web site.

You can wait until FASD Awareness Day on Sept. 9th and do your texting that day, or you can go ahead and START RIGHT NOW. Because, as I always say, EVERY DAY is FASD Awareness Day! So go text everyone, email everyond, fb everyone, telephone everyone. Heck, you can even raise awareness the old-fashioned way and tell people face to face about what alcohol can do to the developing baby. You never know when the message will be shared with someone that will save a baby's life, or maybe an entire generation of babies!
Woohoo! Let's do it!
Teresa

Friday, September 7, 2012

#2 Days To FASDay - Last Minute Links


A special thank you to the international FASD awareness team...


Thank you for making a difference.

Begin celebrating this weekend as you build FASD Awareness.

VISIT www.fasday.com for some final ideas - Teresa Kellerman has been busy!

Thank you for following these 60 days of ideas. We hope we have offered support to make your International FASDay a success.


Jodee and Liz Kulp



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





Thursday, September 6, 2012

#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.

Wednesday, September 5, 2012

#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



Tuesday, September 4, 2012

#5 Days To FASDay - Fetal Alcohol Awareness Month



Write a PSA!
Or use one that already exists -

September is Fetal Alcohol Awareness Month - so share this wonderful PSA with friends - or take a look at some of the other great PSA's online - most of the people working with FASD Awareness willingly share -

This was created by a 2009 high school graduate in a tiny rural KY county - he's got real talent, and I'm so grateful to him for taking the time to do this. Please feel free to pass it on - I want Parker and his fabulous PSA to get a lot of views today!!



Happy FASD Awareness Day from Kentucky!
Laura Nagel

http://www.youtube.com/watch?v=k_USXRi8zt8

Monday, September 3, 2012

#6 Days to FASDay - I have a dream. . . .




I have a dream....


That one day little children will not be born with brain damage because of the alcohol they were fed before they were even borm.


I have a dream. . .

That one day persons with inivisible disabilities will not be treated second-class citizens, but will be able to participate in their local communities accepted in their differences


I have a dream. . .

That one day predators and persecutors will not addionally victimize persons with fetal alcohol. That people will realize it is no joke. That the day - to - day struggle is real and cannot be kissed away, or bandaged or ignored.


I have a dream . . .

That one day we will see all people as mattering.


As my young adult daughter says so profoundly, "You can't be handicapped if you are born like that. You just are."

Sunday, September 2, 2012

#7 Days To FASDay - You only need one minute



More Ideas for Minute of Reflection


Everyone participating in FAS Day is invited to share in the "Minute of Reflection" 9:09 a.m. on September 9, as it goes around the world.

In this magical moment the ninth minute of the ninth hour of the ninth day of the ninth month we want to get out the message that in the nine months of pregnancy, while breastfeeding or planning to conceive, women should not drink alcohol.
In this minute, we also want the world to remember those millions of people around the world who are living with fetal alcohol disorders. If a large bell or carillon is not accessible or appropriate, participants can do many things to observe that special minute in accordance with their own cultural background or religious beliefs.

The Minute of Reflection symbolizes the worldwide circle of community which links all of us who care about FASD, all of us who are working towards prevention, all of us who are trying to help children and adults with fetal alcohol disorders reach their full potential. Here are nine more suggestions for observing the Minute of Reflection. If you have other ideas, please share them with us.
  • Alone or with others, sit outside quietly and listen to the birds, or the wind blowing through the trees, or water lapping against the shore of a river or lake. You may want to focus on the wonderful gifts and strengths of the person(s) with FASD in your life.
  • Say a prayer or recite a poem appropriate to your beliefs or culture.
  • Sing a song or hymn.
  • Listen to an excerpt of your favorite music. (Any suggestions?)
  • Play a musical instrument, alone, or with fellow musicians, or ring tiny bells and "triangles" as the children of Queen of Apostles School, Toledo, OH did at 9:09 a.m. on September 9, 1999.
  • Sit in a circle and share some pure spring water with people you care about.
  • Place a long-distance phone call to a special friend who is equally committed to the FASD issue: you could even make it a three-way or teleconference call.
You may find 9:09 a.m. inconvenient and may prefer to mark the Minute of Reflection at 9:09 p.m., and light a candle to symbolize both the flame of your love for individuals living with FASD, and your burning desire to eradicate this preventable birth defect.
Simple silence.
Each person with FASD is different, and those of us who love them respect their differences. Respecting each other while working together is what FASDay is about.

Saturday, September 1, 2012

#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

Friday, August 31, 2012

#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!