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.


Wednesday, May 1, 2013

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.