29 days of #FASD Love Bursts from Liz Kulp – Day 13

Happy Saturday – Love Burst from Liz
13_Love-FASD
I learned as a little child it was better to tell the truth. Mom and Dad had a “TRUTH TABLE” at our house and when I did something wrong they made it easy for me to tell the truth by having the truth table. All I needed to do was ask for a counsel and I could present my case and turn myself in. When I did that – they would ask me what I thought I should do about it. And that’s what I had to do. If they caught me not telling the truth I never liked the consequences – I would rather be able to learn to figure it out myself.
When I was 13 I wrote The Best I Can Be Living with FASD and there is more information in there to help you understand what I thought about it when I was younger.

#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…

 

 

Of course you can drink alcohol when you are pregnant!

44ed4-samliz-photoGUEST BLOGGER—Liz Kulp
FASD SURVIVAL STRATEGY TEACHER

OR DO ANYTHING ELSE YOU WANT TO –
IT’S YOUR CHOICE

Liz Kulp lives with the challenges of that choice and will for the rest of her life. She is the Mom’s Choice Award winning author of two books to help people understand fetal alcohol spectrum disorders from the inside out. The Best I Can Be – Living with FASD and Braided Cord – Tough Times In and Out.

“Expectng Better: Why the Conventional Pregnancy Wisdom is Wrong—and What You Really Need to Know,” by Emily Oster was published August 20, 2014 by the Penguin Press and created quite an uproar in the FASD community.
My heart remains with the babies whose mothers listened to her advice.
The first of those babies will be born in May 2014.
If my mother ONLY drank a glass of wine a night for 270 days and she ONLY drank a standard pour of 5 oz in each glass – I would have ONLY had 1350 oz of wine to ingest while waiting to be born. Don’t worry that’s only 21 GALLONS of wine – you translate it yourself into how much alcohol. I will be relieved for the babies when their beverage of choice becomes MILK!  
5cdb8-besticanbeBraided Cord is ruthlessly honest.Read my books before you decide to not celebrate 0-4-9. It is such a short time of your whole life!  When I was two I spoke in paragraphs and knew 60 breeds of dogs—no one suspected.
My concrete understanding of the world is solid. The clues were all there and they who needed to understand my needs did not see. Now that I am an adult I want the world to understand for the next generation of children —Liz Kulp (transcribed)
“Wow, oh wow. What can I even say?
As adults we live as active of life and more independently than many persons who share our secret. Oh and we’ve been down the path of experiences no parent wishes for their child. I know what it feels like to have your book published and win awards and get talked about. I am sure this has been quite a journey for Emily and her family—
I just hope her writing did not place other children on life path I endure.”
Dear Emily,
My name is Liz Kulp, any woman who is able to have a baby is very blessed. My birth mother was blessed to have me. She was a single mom, who drank wine and as far as I know – not by the gallon. But her life choices became my life. And my life is not the life you want for any of those future beautiful children like Penelope. There are a lot of things that can create the secret most people don’t see when they meet me. They don’t see that I understand every third or fourth word of a conversation. People think I know what they are saying. Some of it I do know and some I don’t, then later I have to figure it all out on my own—that is overwhelming. Perhaps you say I should just say I don’t understand. Well, Emily I have tried that, and what happens when I do, people began to use more words and they add to my confusion. Or they slow down their speech as if I have no brain and treat me like a child.
If I trust you, I will tell you I need more information, but I have found over the years that people with high intelligence get frustrated when they try to help me so I remain quiet.
Note, I am not an unintelligent person. I am differently intelligent. In fact, some of the ways I see the world may actually be a gift to you.
My life did not begin as a child who people thought would struggle with brain and metabolic injury and that is a problem that will haunt me for the rest of my life because the therapies that could have been in place when I was in preschool and an infant did not happen. As I said, my differences are a secret, and unless you REALLY know what to look for you will not see what I deal with everyday.
In fact, my grandmother, Dr. Carrie Kulp, a professor at West Chester believed I was gifted and so did my great-grandmother who graduated from college as a child developmental professional. That was because the parts of my brain that work very well are in concrete thinking.

Award winning author, Liz Kulp, shares “049” from Jodee Kulp on Vimeo.

Emily, I am a woman, and like you I love and grow and learn new things each day. But, unlike you my life experiences because of my mother’s choice have been hindered. I won’t go into the details – they exist in all my books. And why would I want to write such books. Because I know how hard life is for people like me and their families. I know how hidden our secret is. I know that unless you love a person like me and truly get to know us and our families you remain hidden from our reality. I have chosen not to follow my mother’s path. I have been sober four years and if I am blessed with a pregnancy when I am ready to parent a child in a healthy way – I will give that child the best I have to give from it’s beginning. I know the cost. I am the cost.
Click Sam and my picture to
find my book on Amazon

 

I like Ed Riley’s statement to the Wall Street Journal

I find it amazing that the author wants to take on the responsibility of assuring so many women that it is ok to have “a glass of wine or so a day” while pregnant. She readily acknowledges that “all drinking isn’t created equal,” but fails to recognize that all women are not created equal. There are many factors that go into determining whether consumption of alcohol during pregnancy might have an impact on the developing fetus, besides the timing, amount, and pattern of consumption. Additional factors that influence the outcome relate to nutrition, age and one’s genetics. A recent study out of England (Lewis et al, 2012) on over 4000 children found that several genetic variants controlling alcohol metabolism were strongly related to lower IQ at age 8. Importantly, the effect on IQ was seen in the offspring of mothers who were consuming 1-6 units of alcohol per week. If you had these genetic variants, but abstained during pregnancy your child did not show an effect on IQ. A unit is probably a little less than the standard American drink, which brings up another issue. Just how big is that one or so glasses a day you are recommending? A standard drink of wine is 5 oz, but over-pouring is the norm thus underestimating the volume consumed. I for one believe that most women are probably ok with a glass of wine now and then during pregnancy, but I just can’t tell who those women are. Individual genetics, drinking habits, and other contributing factors limit the ability of science to make the assurances that Dr. Oster appears willing to endorse.

To find my books visit http://www.fasdbookstore.com



FASDAdult from Jodee Kulp on Vimeo.

Why “NO” doesn’t work with #FASD

c2063-img_2725Guest Blogger – Liz Kulp
FASD Survival Strategy Teacher,
Award winning author Best I Can Be, Living with Fetal Alcohol and Braided Cord Tough Times In and Out

Don’t use mostly, sometimes, maybe, perhaps—I won’t do that!”
This avoids giving me direction I can use. It keeps my brain on a fuzzy place like standing on a ball.”

  • I do yes and no
  • I do Tuesday at 3:00
  • I do give me ten minutes of quiet time
  • I do it will be finished at 5:00 pm
  • I do true and false.

Don’t tell me what I can’t do
This empties my mind and the connections in my brain struggle to discover replacement thoughts

  • Tell me what I can do.
  • Give me choices
  • Let me come up with choices before you tell me NO – “What else could we do?”

 No takes away my ability to think. It puts my mind into emptiness without opportunity.  Tell me what you need, want, desire and I will do my best to help.

Abstract thinking is like grabbing thoughts, ideas, and explanations, but when you look into your hands there’s nothing there.

You can’t have abstract ideas in your physical possession.

Concrete ideas you can see, touch, hold, show and prove!
“My green minivan has a flat tire” – shows a picture, can be touched and if you look at the tire you can prove it is flat. That is a concrete statement vs “The vehicle won’t go.”

For example:

Abstract Concrete
Justice Police Officer
Fled
Advised
Transportation
Drove away in a car
Said or told
Bus, car, train, canoe
Criminal
Golfer
Idea
Girl who stole my purse
Tiger Woods
John’s idea
  • Be aware that persons with organic brain injury may have trouble filtering out distractions, fighting their impulses and make poor decisions sometimes by obeying “EXACTLY WHAT YOU SAID!
  • Be aware of what you are saying – all the time.
  • Understand that if they are doing something that you have expressly told them not to – go back over your instruction and see if they have translated what you said literally.

When using sensory words – does the person understand the word you may use to describe it?

  1. Taste – bland, biting, bitter, brackish, briny, metallic, minty, nutty, peppery, salty, sour, spicy, sweet, tainted, yeasty – (if you use the word biting will it make sense?)
  2. Touch – cold, hot, warm, tickly, harsh, gritty, grainy, clammy, chilly, tingle, sting, smooth, rough, numb, knobby, harsh, sticky, slithering, jarring – (if you use the word jarring will the person understand?)
  3. Sound – hiss, whisper, whine, screech, snap, swish, splash, creak, crack, gurgle, murmur, hum, cry, giggle, chime, clatter, clink, crackle, buzz, blare, bellow (if you use the word bellow will it get confused with below?)
  4. Sight – flash, flicker, glare, glitter, muddy, spark, foggy, bright, cloudy, glow, shimmer, chalky, dappled, inky.

Idioms are abstract and you can get some wonderful or deadly surprises. An idiom is a word or phrase that is not taken literally, like “bought the farm” has nothing to do with purchasing real estate, but refers to dying.

Abstract Idiom Actual Meaning Concrete Misunderstanding
A chip on your shoulder You think you know a lot What? There are no chips (potato) on my shoulder
You’re high as a kite You are drunk or on drugs or very very happy What? I am standing on the floor.
Out of the blue Something unexpected happened Huh?

Step safely on the stones of concrete language to allow the person to “gain the real meaning of what you are trying to communicate” and not get the wrong idea. 

When your brain works well in concrete language and struggles in abstraction, simple listening becomes overwhelming. Conversations become one-sided. Progress forward ceases. By keeping your conversations in concrete language you allows the person to remained engaged in your conversation.

Avoid the dangerous ground of abstract language with it’s grey areas of misinterpretation and misunderstanding.

Vimeo-Banner
Visit our website www.betterendings.org for more ideas.
Learn about LiveAbilities.
We are expressing a voice for the voiceless
to encourage building of better baby brains

True Commitment – Fetal Alcohol is NOT who I am!

CLICK TO PURCHASE

Liz Kulp founded the FaceBook Group for adults and teens living with the challenges of FASD. Her group is called Striving for the Best Ability – Living with FASD not letting it defeat me.

If you know a teen or adult who needs positive – faith based input – check her site out! I’ve learned so much from my daughter whose life is affected by Fetal Alcohol Spectrum Disorders (FASDs) — Author, Liz Kulp, celebrates life at age 27. She is a published author of two books and winner

Braided Cord Tough Times In and Out

  • Mom’s Choice Gold Award – Adult Non Fiction – Life Challenges
  • 2012 USA Best Books – Health -Recovery and Addictions.

Best I Can Be Living with FASD (Revised 2013!)

  • Mom’s Choice Gold Award – Best Contributing Young Author
CLICK TO PURCHASE

Congratulations Liz on Four Years of Sobriety and Five Years of Living Independently! You are achieving your dream of making a difference in your generation to prevent FASDs! Blessings on beginning the career of your dreams this year!
Mom’s Choice Gold Award – Non Fiction – Life Challenges

TO VISIT LIZ’S WEBSITES
 www.BraidedCord.net  or www.BetterEndings.org
TO ORDER HER BOOK  https://www.createspace.com/3436934
TO VISIT FASD BOOKSTORE www.fasdbookstore.com

To read more from Liz’s book click here

Committed to each other for a life
worth living – walking the road
of FASD together

True Commitment
(Poem circa 2008)
By Liz

Alas I sit,
glued to a place of undoing and unmaking
of all the mistakes I have achieved
or contemplated making.

Waiting for renewed independence.
Proving to you who I am
and who I can be
and who I shall become.

No longer broken, but bent
Bent upon making a difference
with different choices and
new becomings
Reframing my thoughts
and laying down my rebellion
to fight for a future
instead of wants I thought
I so needed but didn’t
An though committed by a decree
that states I am an “other”
in need ot care and watchful eyes

I have learned what commitment
truly is – that it is the love
of family who remains
hopeful and helpful
that it is the love of
my sweetheart who
stands true
that it is a belief in myself
that I can do and be better
and emerge from
a state run commitment
to a self formed commitment
of being true to myself
and all of you.

New Adult Perspective in The Best I Can Be Living with Fetal Alcohol Syndrome

New Release! More Resources!
At thirteen, Liz Kulp wanted to let people know what was inside her brain and what made her life so difficult. She hoped by sharing her life other families and children would have more opportunities for success. Fourteen years later, Liz, now an incredible adult revised this beloved title and added her adult perspective of living with FASD in hopes that families and children living with these challenges could better prepare for the future.

In this new revision, she has been joined by other adults, who she refers to as FASD Life Experts and they have added additional wisdom.  We love the new resources and are excited about this new direction.

#13 Days To FASDay – $3 Coupon – Listen to persons with FASD

Braided Cord – Tough Times In and Out

by Liz Kulp

A story you won’t forget. Visit her website

Liz Kulp, winner of Gold Mom’s Choice – Life Challenged 2011 and Outstanding Young Contributor in 2009 for The Best I Can Be Living with Fetal Alcohol Syndrome or Effects offers readers a rare
“new” opportunity of understanding adult transition with FASD.
There is always a feeling of awe when you are handed the first copy of your book. I loved the look in Liz’s eyes when she held her new project. (click to order learn more)

Liz was diagnosed with fetal alcohol spectrum disorders (FASD) as a young teen. Knowing her challenges and understanding her strengths helped her graduate from public high school and strive to move on to independent adulthood like her peers. But, she soon learned that life within the context of a family that understood and helped her gain the desire for independence had not prepared her to live in a world filled with predators and abstract thinking. Liz unashamedly lets readers inside the hidden world of adult transition for many of our young people with FASD.

“Stunning. Absolutely stunning.”
– Deb Evensen, FASD Behavior Specialist, FASAlaska
“Wow Liz this is one fantastic book. I can’t tell you how impressed I am. This is a best seller.”
– Renae Sanford, FASD Educator and Family Support Person
“After reading Braided Cord Tough Times In and Out I wanted to shout out to all social workers, adoption workers, foster parents, and adoptive parents ‘You have to read this book!’”
– Ruth A. Rice, Mental Health Practioner, Birth Mom, Adoptive Mom
“Heart wrenching, yet inspiring! There is so much that Liz Kulp can teach about FASD because she has lived it. From her lowest lows to her highest highs, we need to listen to her song.”
– Victoria Deasey, M.S.Ed, Cert AVT, CED, Teacher/Therapist/Parent Coach/Consultant
“Once again, Liz and Jodee have handed us exactly the book we’ve been waiting for. Braided Cord is an unfinished story of resiliency, courage and love. Thank you for allowing us to be a part of your life as it continues to unfold. Your honesty is a light for the rest of us.”
– Laura Nagle, Bluegrass Prevention Center

Speaking, workshops or wholesale books contact: www.betterendings.org or jodeekulp@gmail.com
$3.00 Gift from Kulp Family for each book orders additional quantities please contact us:

Direct links provided for discount – Just add coupon code JZLZLVT2 to order – 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.


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
https://www.createspace.com/3497641

Braided Cord (2010) – Liz’s adult transition with FASD
https://www.createspace.com/3436934

#15 Days To FASDay – Take a Stand for Persons Living with FASD

09.09 Reason to Take a Stand to
Build Better Baby Brains

On the ninth minute of the ninth hour of the ninth day of the ninth month, we ask the world to remember that during the nine months of pregnancy, alcohol can be very dangerous to the baby. We also ask the world to remember the millions of people worldwide who will struggle lifelong with intellectual disabilities caused by prenatal alcohol.

What the members of FASworld want:

We want to make the world aware that no amount of alcohol in pregnancy is safe for the baby.
We want to make the world aware of the millions of people internationally who can never live normally, because their brains – and often their bodies – have been damaged by alcohol before they were born.

We want our governments to invest in information programs; rehabilitation facilities for women with alcohol addiction problems, and their families; adequate diagnostic facilities, special education, and other support for individuals with FAS, and their families.

Volunteers from around the world work together year-round to build awareness. Each year, on September 9, we observe International FAS Awareness Day (FASDay) with its “Minute of Reflection” at 9:09 a.m.

Each year our memberships grows and we are represented by volunteers in Canada, the U.S., England, Scotland, Northern Ireland, Ireland, Germany, France, Poland, South Africa, Australia, New Zealand, Uruguay, Bermuda and Costa Rica participated and new communities join in every year — be sure to let us know when your community holds a FASDay event.

#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!

#23 Days To FASDay – Host a drop in event

So easy….


Host your own drop in event.

offer coffee and cookies on FASD Awareness Day
Simply send out an invite to your clients, friends and family.

Sample Invitation

FASD Awareness Day –
Owen Sound Drop In Event
September 09

Organization: Children’s Aid Society
Wednesday, September 9

Children’s Aid Society
1290 3rd Ave E,
Owen Sound

2:00 – 4:30 pm

Fetal Alcohol Spectrum Disorder is the most common birth defect in the industrialized world causing permanent damage to the developing brain of one in every one hundred babies born in North America.Join us for this drop-in event, which will include refreshments, networking, education, awareness, and advocacy for those with FASD.

For more information contact: