Wednesday, July 3, 2013

3 Rules to Trail Guide for Persons With Prenatal Toxin Exposure #FASD #ASD

Are you a trail marker or a barrier?

I trail guide a number of couples living in today's world navigating with a variety of challenges including FASD.

Rules of Marking a Trail for Self-Discovery

  1. The marks must be visible to those who are looking.
  2. The person looking must be trained to see and enjoy the self-discover
  3. The person finding the marks must have clear direction of what to do next.

What I have learned as a trail guide...
(and a mom, friend and human being)

  1. I have to lay Jodee down. The abstract world I am able to navigate in serves little purpose to walk together in harmony. I do use my abstract abilities to trail guide or mark trails for self-discovery—this DOES NOT make me more able—I consider myself a cognitive translator between worlds.
  2. I have to be able to walk in unconditional love—just as the people I love are able to do.
  3. I have to be able to understand hidden fear and reactions to it—I need to respect it, embrace it and then provide honorable and safe opportunity for self-discovery to move from fear to peace
  4. I have to change my speed which happens to naturally be the "energizer bunny" to the speed of the people I love - this is a good thing - most people in the "what they refer to as normal world (lol)" never allow themselves this beauty.
  5. May YOUR voice raise loudly as teachers because you have the ability to change this world 
When I began this walk in 1997 - my first understanding and slogan was a "voice for the voiceless" 
I am proud to say - YOU the adults with FASD are gaining THAT voice!

Thank you for being my teachers
Jodee

Tuesday, July 2, 2013

How Texting Can Help Persons With #FASD and #ASD

TEXT TO SUCCESS
with FASD

See It,
Write It,
Remember It. 

Guest Blogger
Ann Yurcek, author Tiny Titan Journey of Hope
To see more of Ann's great articles visit her blog

With my kids with organic brain damage from their prenatal exposures along with all the other alphabet soup of diagnoses, I have learned that they learn better by seeing what they need to do. 

Many of our kids can have normal IQ's and can handle more concrete learning information.  Often they do well early in their school years on when the information is presented in a CONCRETE easily understood format.

God gave me the gift of understanding that my children use visual memory much better than any other medium of getting things to stick. They can remember vividly what someone was wearing, what they did, and all sorts of information from an event. But cannot remember some of the simplest other things.

Think in the terms of a camera. They can capture the images they see, but they can't see themselves so they never know what they did.  (Another blog post for another day).  But what that taught me was to help them see just like they now are teaching in autism with picture prompts etc.  I used simple notes, cannot be too complex or they shut down and are overwhelmed.  Short and sweet, concrete and to the point.

For years I have been teaching teachers, principals and anyone who works with my kids if they want them to remember something they need to TALK LESS and use a simple bullet reflection system to help them see and retain the information into their memory.  Talking to my kids the message becomes jumbled and often lost in translation as it processes through their damaged brains.

My house became a series of notes put up as reminders. There were times even though still needed the kids removed them as they didn't want to be treated differently or have their friends see anything that will get them noticed for being a different.

Often kids/adults with FASD have auditory processing disorders. But in our world and society we talk too much. When I talk to my kids with FASD I have to talk simply, with three or four words with a slight pause which allows their brains time to process the information that I give them.  Then double check for understanding.

If I wanted my child to bring me or put something away right I would use a post it note reminder. Go get me french fries from the freezer.  I had to do something as too many times they got to the freezer and brought in corn instead of peas. or whatever and it ended it in my frustration and their feeling bad that they got it wrong.

I know that my adult kids can remember what they receive via text message, what took me so long to get on the text to remember kick?

Becca and Dee have been texting each other room to room. They were texting in the same room the other day. I wondered why?  Becca figured out Dee understood instructions better texted than communicated. It took Becca with her Autism and understanding of not hearing what is being said in a room full of too much noise for her to know what to do to help Dee understand instructions.

I was talking with a friend lately and talking about we talk to much. She has been emailing her daughter with discussions instead of deep conversations and they seemed to make a difference in her understanding and her remembering.

LIGHTBULB moment:  With our teens and young adults we need to use their mediums to help them.

I just tried an experiment. I texted Dee up in her room and asked her if she could please make Mac a bottle.  I received a reply, I am all the way up here!  I texted back that I was writing and I would really appreciate her helping me. Okaaaay.

 Normally anything you tell Dee needs many steps going like this.
1. Ask her to do a simple chore.
2. Wait 3-5 minutes to see if it processes and is understood by asking the question again.
3. Now wait 3-5 minutes to see if she responds.
4. Carefully prompt her again if not moving.
5. Double check for understanding.

To make the said bottle would require me to have 15 to20 minutes of intervention. Not because she is being oppositional like so many would think. It was just because it would take that much intervention and complex processing for her to be able to hear it, transition, and get moving.

The bottle arrived in less than 5 minutes.

Want something done, want them to remember, quit talking so much and put it in writing.

TEXT to SUCCESS.  But first sign up for UNLIMITED TEXTING.

Monday, July 1, 2013

True Commitment - Fetal Alcohol is NOT who I am!

CLICK TO PURCHASE
Liz Kulp has just opened a new 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.

Saturday, June 22, 2013

5 Stepping Stones to Navigate Through Concrete Thinking


"I'd like to work with senior citizens," said my daughter.

"Do you think those people will like your hair? I am a realist," said the professional job coordinator. 
My daughter's head tilted.
"I am a realist. Do you think those people will like your make up?" she continued.
My daughter's head remained tilted and her eyes squinted.
"Do you think those people will like your earrings? I am a realist, I am just being a realist," she said.
We were safe, I noted my daughter's eyes glaze over and she moved into her inner world.  My daughter is an adult navigating an abstract world with concrete thinking and an auditory processing disorder. I am often her translator and in this case I remained silent unless she requested me to provide more information.  I wondered, "what was my daughter hearing compared to what I had heard?" I was stunned. Safe in the car I asked, "What did you think of the job coordinator." 
My daughter, promptly answered, "Who was that? I didn't get why that Realtor cared about how I looked, Grandma always says she likes my hair and make up. And Grandma's friend told me to get more piercings and said she'd do it herself if she was my age. That Realtor was weird."

Step One - Recognize concrete vs abstract thought processing — For those of us who live, laugh, work and love persons with concrete thinking we sometimes "get it" and sometimes we don't. Often we are so busy living our lives that we miss the understanding of the person we are trying to mark trails of success and plant opportunities for learning. Instructions given by professionals, parents, caregivers, teachers and other people close to the person with concrete thinking must take their thought process and life experiences into into consideration at each step of communication or instruction.

Here's an example:

"Emotions are like waves, you simply ride them up and ride them down," said the therapist, and she repeated her statement three times for additional understanding, moving her hand up and down like a wave and finally finishing with "You ride it up and down."
In the car, I always encourage playback of what happened in the session and work through additional understanding.
"You know what I don't get?" my daughter asked.
"What?"
"How come she wanted me to get in a wagon and ride up and down."
I translated what the therapist was trying to explain and how emotions can be loud or calm, big or small, and we talked together about examples of loud emotions and calm emotions and when they happen and how they change. Then we talked about what the waves in an ocean are like - we live in Minnesota - and how they work.

Find the love in each stepping stone.

Step Two - Recognize concrete thought processing is a valuable skill and honor it — Concrete words name and describe things in detail. They provide clear direction, and what you say is what you get. My friend, is a manager in manufacturing and he shared how he values the people doing visual inspection of his products versus the robotics and machines they had implemented.

"I would put my functional employees up against my other employees, visual computerization and robotics on any given day. My functional teams would beat them hands down in quality, consistency and skill. I have one department I've been thinking of changing to the employees who understand what I need and once I tell them what the job is that I need completed, it is exactly what they do."

A word, picture (sign) or phrase is concrete if:
  1. It provides specific meaning. 
  2. It is specific, particular, real and tangible
  3. It is characterized by or belonging to immediate experience of actual things or events
A word, picture (sign) or phrase is abstract if:
    1. There is little or no attempt at written pictorial representation or narrative content
    2. It is unclear, indefinite, imprecise, indistinct, slight, hazy, vacant or obscure
    3. The words or phrases do not provide specific meaning
    4.  It is insufficiently factual
    5. It has only intrinsic form
     National Security Example:

    "____, return to Homeland Security. _____, return to Homeland Security."
    I looked at my daughter, "What did you do?"
    "I don't know. Maybe I forgot something," she answered and we trucked back up the concourse, to miss our plane and see what we forgot.
    "Are you ____?" the uniformed agent asked my daughter.
    "Yes, I am," she answered.
    "Were you carrying a lighter?"
    "No."
    "Were you carrying a lighter?"
    "No."
    "You were carrying a lighter?"
    "No, I put it in my sock so I wasn't carrying it."
    "We are heading to a conference to speak on fetal alcohol spectrum disorders, my daughter has a brain injury. She is answering you with all honesty."I pulled out our book, The Best I Can Be, Living with Fetal Alcohol Syndrome. My daughter is beautiful and no one would realize she had a hidden difference.
    "Your sign was wrong," my daughter said.
    "What do you mean?" asked the agent
    "Your sign said, do not carry lighter, so I put it in my sock so I wouldn't carry it. You should put a lighter with a circle and line through it, then I would have thrown it away."
    On our return flight, my daughter noticed that all the signs had been changed.

    Step Three - Persons with concrete thinking may hide  — He is so witty and funny and expressive! But what if what you thought was funny was actually the way that persons understood what you said. What if the question you asked was also the question that person answered. What if what you asked was a matter of life or death?


    Winner 2012 Best USA
    Books - Young Adult
    Fiction, Mom's Choice
    Gold Fiction - Adults
    and Young Adults

    Excerpt from The Whitest Wall
    Turner pressed record. “Are you Kevin James Abbott?”
    “Yes.”
    Turner recited the Miranda warning. “Do you understand?”
    “Yes.”
    “Can you sign this paper that says I have read you your rights?”
    “Sure.” Kevin liked signing his name.
    “Do you want to talk to me?”
    “Yes.” Kevin knew he was innocent. He hated Doc Johnson, but hating someone was no good reason to kill him. He’d tell the truth for a ‘stay out of jail’ pass. He was a good talker and had bamboozled his way out of police situations before. What was that word—no contesto, no commento? Kevin fixated on a small black fly as it walked across the table.
    “Kevin, do you know why you’re here?”
    “I killed Doc Johnson?”
    Turner was surprised the confession came so easily. “Did you have an altercation with him?”
    “Huh?”
    “Tell me when Doc Johnson made you mad?” Turner sat back and relaxed with his arms behind his head. Kevin’s eyes rolled up to scan from left to right. He was quiet. Turner waited and smiled.


    Step 4 - Realize it is brain based and for some people it cannot be altered - Sometimes the path and stepping stones we follow can get a bit messy. Sometimes they seem to have random patterns we find hard to understand.

    Concrete ideas are usually visible and objective. Thoughts in concrete thinking are derived from the senses touch, smell, sight, hearing, and taste). Thinking is characterized by actual words, objects, events and the absence of concepts and generalizations. Therefore, problem solving is accomplished in a concrete, systematic fashion based on what is perceived, keeping to the literal meaning of words, as in applying the word dog to a particular animal and not to all dogs.

    Most children move from concrete thinking to abstract thinking between the ages of seven and eleven. These children begin to process ideas that involve complex visual or language-based ideas that are not easily associated with concrete ideas. Abstract ideas are often invisible, complex, and subjective. Abstract words refer to concepts or ideas-things you cannot see, hear, taste, touch, or smell. Examples include; love, success, freedom, good, moral, democracy, and any -ism.

    Children entering abstract operations began to understand the meaning of things learned with a desire of trying to explain the how and why. They begin to interpret, summarize, and discuss. As they progress they are able o break down knowledge into parts and show relationships through comparison, experimenting, and categorizing. Eventually the production of something original is brought together from the components of previous knowledge and they are able to make judgements based on established criteria.

    A child with organic brain injury may progress into adulthood with concrete thinking. What I have observed with these adults is that they ARE ABLE to compare, categorize, experiment, judge and produce original work, but they do it with tangible information. The ability to have SMART concrete thought is a value in today's information abstract world. We must learn to understand and value it. One of the FASD Life Experts I consider a good friend explains, "My mind walks, it doesn't jog. If my world gets too loud, I have to find space to quiet my brain."

    Anne Russell from Australia gives an excellent example: "One young woman with FASD was told, ‘Don’t come home after dark,’ so she stayed out on the porch all night.” This is an example of a person with organic brain damage trying to do the right thing but because of the injury to her brain was unable to be sufficiently flexible to see that the instruction meant something different.

    Last week my husband had a conference to attend, and after dinner, one of my adults piped up, "Dad saw Superman today."
    "How did he do that?" I asked knowing he is not a great fan, or had told me anything about it in the morning.
    "He drove his car," answered the man looking at me like my brains had just fallen out of my head.
    "Ya, you know - rectangular box with wheels and a steering wheel," chimed in another. 
    I laughed at them poking fun of me. Later alone, with my husband I asked, "How'd you get to Superman today?" He answered quickly, "After we had lunch at the conference, they passed out 3D glasses and told us they had a surprise - our classes were over and we got to watch the premier showing before it was available to the public."

    Step 5 - Know the difference and appreciate when you fall in between the cracks - Be aware of what you are saying – all the time. Understand that if the person is doing something that you have expressly told them not to – review your instruction and see if the person has translated what you said literally.  Did you use specific language:  people, places, numbers, dates, and details.  Be wary of particularly ambiguous terms.

    My daughter states this clearly, "Don't use mostly, sometimes, maybe, soon, fast—I don't do that—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 and I do true and false. Don't tell me what I can't do—tell me what I can do. Don't just say no! Give me choices to handle your no. I don't need to know the how come, I need to know my options for the next steps of action. No puts my mind into a chasm of no opportunity, it takes away my ability to think. Tell me what you need, want, desire and I will do my best to help." 
    1. 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. 
    2. 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


    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.

    • 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.

    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.

    Visit our website www.betterendings.org for more ideas.

    Wednesday, June 19, 2013

    Would you expect a person without vision to learn to see by poking them in the eyes?

    Learning to see the trail by walking in the forest



    What wires together fire together and for our WHOLE lives our brains continue to grow as we continue to experience new things. In Live Abilities natural classroom program we mark trails for self-discovery. Joyful self-discovery allows a person the greatest learning opportunity. Because our learning strategy begins with a trail guide marking trails our participants must first learn to look and see the markers of opportunity.

    A forest is filled with exciting experiences-a line of ants helping each other carry a dead insect carcass to their hill, the calls of different birds, the chatter of tiny creatures, footprints heading in unknown directions...  

    Nature allows us to think outside of our inner thoughts. 

    Natural movement in natural settings through play allows us the opportunity to GROW NEW BRAIN CONNECTIONS.

       "Scientists are discovering that physical activity alone is enough to trigger a boost in brain cell proliferation and that specialized exercise programs may help repair damaged or aged brains.  For twelve years in Denmark, an experimental School in the Forest for kindergartners proved an innovative and effective way for children to develop school readiness skills. The children climbed trees, ran, played games, developed their imaginations, explored and learned about their surrounding world with their teacher. The results were first graders ready to learn.
        Getting your arms and legs moving and the heart beating faster increases the blood flow to the brain. This blood keeps our brains healthy by feeding our neurons with oxygen and nutrients.
        Our yard became a playground with balance structures, hammocks, tire and porch swings, hula hoops, bubble blowing sticks, chalk and jump ropes as neighborhood teens joined in the fun to help Liz. We all had a reason to go back to child’s play and have fun doing it. Who said any of us should outgrow childhood?
        The sun smiled on us as we climbed new mountains and planted gardens.  Fourteen years after Liz joined our home, she finally rolled down hills and played sidewalk games. Liz smiled at the snowflakes as they fluttered down on a cold night. She stuck out her tongue in a rain shower and caught raindrops on her face. The time arrived to make snow angels and take walks in the rain."
     
    Can we create new neural pathways? What can you discover in these two pictures? There are thousand of opportunities to learn  through experiences in a natural classroom. Click each photo to see what you can discover when you look deeper.


    Many thanks to Jim Strohecker (Jim@healthy.net ) for his original idea about the sensory awareness walk listed below. In honor of the people I love I keep sharing what I learn. Blessings to families and persons living with prenatal exposures to toxins—together we can make a difference.

    Try a Sensory Awareness Walk this week and leave a comment about your experience. In the beginning and perhaps for some people forever - please do not mix the modalities.
      
    BREATHING WALK
    • Begin by allowing your mind to focus on your breathing as you walk. Simply notice your breath. Don’t try to do anything with it. Just notice.
    • Where in your body do you feel your breath? Your abdomen, chest, back, or even high in your collar bone?
    • What do you notice? Is your breath smooth, rhythmic and easy? Is it hesitant, sporadic, or labored?
    • What else do you notice that perhaps you haven’t noticed before?
    • As you focus on your breathing, does anything change without you having to purposely try to change it?
    SEEING WALK
    • Shift your focus to what you see.
    • What are the shapes, textures, movement, and colors that you notice?
    • Can you look without naming the objects you see, even for a few seconds, but just see them as shapes, textures, movement, and colors?
    • If you are in familiar territory, are there things you notice that you’ve never seen before?
    HEARING WALK
    • Shift your focus to what you hear.
    • What sounds do you hear?
    • Listen more and more deeply, what are the sounds underneath the sounds you normally hear
    • Even for a few seconds, can you hear what you hear without naming the sound?
    • What are the nuances of the sounds? Are there aspects to the sounds that you never noticed before?

    SENSING WALK
    • Now shift your focus to what you sense in your body.
    • As your body moves, what do you notice? Gently scan your body as you are moving, starting with your feet and ending at your head.
    • Can you feel your muscles as they move?
    • Can you feel the touch of your clothing, air, or sun on your skin?
    • What can you notice that you’ve never noticed before?

    BRINGING THEM ALL TOGETHER
    • Now see if you can bring breathing, seeing, hearing, and sensing all together as you mindfully enjoy your walk.
    • Don’t worry if you find yourself quickly shifting between these channels of awareness. Just keep practicing and see if you can, even for a few seconds, be aware of them all at the same time.  What do you notice that you haven’t noticed before?
    Want some more great ideas also visit Integrated to Live Blog

    Friday, May 10, 2013

    Service Dogs for #FASD - Do they make a difference?

    Broken hearts, threads of opportunity, and fur-covered love




    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 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 5K fundraising race/walk to raise awareness for fetal alcohol spectrum disorders (FASDs). FASD is 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” cause; 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.

    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 in 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 unraveling.

    She was an enthusiastic volunteer. And opportunist that I was, I saw 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 dialog with the reluctant rabbi, who ultimately let us film in the synagogue. The video was a hit at our fundraiser.

    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.  She helped. 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 brilliant 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 mom-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 ultimately 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. And as we crossed that milestone, I told her that her story was so remarkable, so compelling, that it needed to be made into a movie. I said I was not sure how, or when, but that somehow, some day, their story needed to be made into a movie to help raise awareness for FASD, and awareness of the vitally important role Chancer's fur-covered love had played in their lives. "Imagine how much it would educate AND inspire," I kept saying.

    Well, Donnie 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. I had ups and downs with employment and life. 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 Chancer, that handsome dog. I kept imagining their story being told "on the big screen," but did little to advance that other than imagining it. And mentioning it when Donnie and I would catch up.

    Through the years -- six years from our first meeting -- the story was been told in an incredible award-winning book by Donnie's 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,” Chancer!  

    Then, in an epic feature spread in the New York Times Magazine (2.5.12), a best-selling author wove this story and all its intricacies and miracles together so beautifully that I firmly believe there is a thread-for-thread matching tapestry of it hanging in heaven. And now, with luck, we won’t have to wait too long to SEE the story being told.


    You see, Donnie connected with a group of movie producers – Hot Flash Films – and they have seized this unique opportunity to help 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. 

    The update as of November, 2012, is that Chancer’s story WILL become a movie! It is being written by Writer/Co-Producer Karen Hall, who wrote the script for the legendary movie “The Betty Ford Story” and has written for some of the most well-known TV shows of the last 30 years. The movie will be brought to the screen by Emmy Award winning director Martha Cotton.

    And so dreams are coming true. I am just wondering who’ll play ME in the movie. 


    For more information about Donnie Winokur, her family, and Chancer, the "wonder dog," click here.

    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. Follow her on Twitter @TurnAroundMom.

    Read more articles by Carey Sipp here.

    Friday, May 3, 2013

    We rear children so we can RAISE adults #FASD

    Can we learn to silence our defenses to make a difference. 

    Last night I had the pleasure of co-hosting a chat with three incredible adults who struggle with the challenges of body, brain and sensory issues due to prenatal exposure to alcohol. As questions were asked they graciously answered, then at one point one by one they shut down—looking at each other and laughing. What was so funny I wondered as they muted themselves and I stepped in for the conversation.

    After the program, they shared deep insight—
    • "You, who live outside of our world often miss out, because you do not hear what we share."
    • "We were giving them our best ideas and kept getting shot down."
    • "We kept sharing and were not being listened to."
    • "We know what we are talking about."
    • "Our viewpoints once again were discounted and after numerous times, we just looked at each other and burst into laughter. We all knew the scoop, the story, we had been their so many times when we shared."
    Oh, what insight.