Meet Vicky #30 – 90 Real People. Real Lives. #FASD

We are doing this Vicky and TODAY is your day — You are runner number 30 – Thank you so much for sharing your story and stepping out to run with Mac!

MEET VICKY – I grew up in the foster care system and no one talked about FASD openly so I did not get much intervention until I was an adult. That is very sad as so often I did not know what was going on and became angry. As I grew older I found people who wanted to learn about my challenges and help me. I’m so grateful for that.

MY STORY – I am not sure when I was diagnosed but I was in foster care from when I was 18 months old till I was 18. Back then FASD wasn’t something anyone openly spoke about so I didn’t get much intervention. I grew up being a very angry person cause I could understand what was going on most of the time. As I grew older I found people who wanted to learn and help me. These good people did a lot of work with me and I’m so grateful for that.

STRENGTHS – I am good at sports. I am also kind and careful to others

STRUGGLES – I have a big difficulty handling change. I have to know what is going on and if I don’t I spin out of control and get angry. My anger can be a real struggle and it gets in my way some days.

MY WISH – For there to be more help and support for people FASD.

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Horrible behavior from #FASD by R. J. Formanek

Often, I read messages from parents telling me about the “HORRIBLE” behavior exhibited by their children and the trauma they are feeling because of it. Sadly, many of us living with prenatal exposure to alcohol have had a hard road to follow, with no supports or understanding at all, so many of us have made mistakes. They say we are only as happy as our most difficult child situation, and well folks when you are living with a trying to become an adult in a brain that is taking molasses time to grow up it can be a journey of extreme parenting. When we mix dysmaturity with becoming an adult chronologically it is a nasty mix. You cannot change the structure of his brain or give him abilities he may not be capable of mastering.

We, the adults with FASD know how tough this is.

We’ve somehow lived it and survived. Some with parents at our sides, but many of us abandoned while we figure out our life path. It is not easy flying with broken wings. Time does not heal the wounds we’ve been given before we were born.

As adults, living with the challenges of FASD, we aim to change that with the kids growing up now by providing a bridge of understanding potenial proper accommodation and that can make all the difference later. So many of us – people with FASD and caregivers have tried to go this alone. Remember, you do not need to do this alone – you can develop your own braided cords. And that we will write about in the coming weeks.

 Let me begin…

I think I can best approach this via my own life experience, and hope that there are some parallels between experiences.

I left my family at the age of 14, into care since we were not able to get along for a number of reasons. The biggest reason would be something we had no idea about (FASD) and thus were stuck dealing with all the classic behaviors with no explanation. My grandparents were at a loss, they had not dealt with anyone quite like myself, and mixed with their advancing years having a rock crazed teenager around must have been very challenging.

On the surface I was belligerent, cocky and totally full of myself…

… but on the inside I was confused, hurt and really didn’t understand why I was so different. But I knew I was… everyone told me I was.

So, I spent a year going through 13 foster homes and was finally legally emancipated and “set free” to pay for my own mistakes. The only thing the system could think of doing with me at that time was to make me “an adult in the eyes of the law” and then I could be put into the correctional system as an adult.

 Yes… that was the plan social services came up with for me. I personally find it quite barbaric… but that was then…..

Long story shortened (thankfully, lol) instead of going directly to jail and not collecting $500 I went into a group home with a number of other incorrigible young adults. I stayed there for 5 years, and to all appearances I was doing nothing good with my life, parties, and lots of girls etc… but I was learning about me.
There was so much I did not know, starting with myself and my own feelings and thoughts… and I needed to figure out what those were.

I needed to see the world and experience the good and the bad myself, it’s the way I understand things… by experience.

That road has taken me many very interesting places and I have met some very interesting people, and I have been so many different people to so many others that I learned who I really am.

But my thought processing is different, and I do things at my own speed… no matter what the calendar says, I know how I feel.

People tried to help, but not having the same type of experience I did put them at a disadvantage… what worked for them did not work for me because it did not make sense to me, the way they explained it. Not their fault, we just speak different English I guess.

But there were things that helped along the way:

  • Knowing somewhere there were people who believed in me, even if I did not see them every day.
  • People who cared for me, but understood I had to walk this path alone and trusted that when I needed help I would ask. I know now how difficult it was, but at the time I needed to make my own way, make my own mistakes and have my very own successes. I NEEDED to do that. For me.

It was more than a drive, it was a reason to go on.

Some people had a hard time seeing that, and it took years for me to start to put it all together and show positive improvement… but it DID start to happen. I reached out for a more ‘normal’ life.

Well… as close to that as possible, anyways.

I guess, in the end what I am saying is that you raised your child and what you taught him is in there, but he needs to apply it to his own life, and that will happen at some point.

I do not know what your loved one is feeling about what is going on, but doubtlessly he or she  IS processing and learning every day.

Now, none of this is much comfort to you at this point, but it’s ok to pull back and be a more “quiet support”… he wants independence and helping him find it can be a great thing for you both.

He will learn to do things, or he will learn what he can not do,
but in the meantime it’s hard to sit and watch.
I get that… as a parent I do understand.

Trust in the values you have given him all his life to one day surface and you will be so proud! Watch over him as best you can, be there when he needs you, cheer the accomplishments he makes on his own, help pick up the pieces when he falls.

Together you CAN make this work… it takes faith and love but it can come to pass. Hang on, it’s going to take a while…
but your family is worth it.

I hope that makes sense……

Take time for yourselves – caregivers we don’t need you overwhelmed. We need you breathing to help us. Hopefully in the coming months we can provide ideas of how to take care of you while helping to navigate and guide us! Just remember in the end it is our life and our understanding and our language and sometimes it is very difficult to bridge.

Amygdala – #FASD understanding at it’s source – by Craig Peterson

THE AMYGDALA – STOPPING FLIGHT OR FLIGHT AT ITS SOURCE

What on earth is the amygdala?

Stuckinthemud-2

Written for Facebook – Each Child is Special – by Craig Peterson has a lifetime of successful parenting experiences after nurturing his six children with special needs…and now wants to share his wealth of knowledge with ALL parents who want to work smarter not harder in raising their own.

Most people have no idea. Even less can say it correctly.

Let’s start with the pronunciation. Amygdala contains four syllables with the accent on the second one. Just remember to say “ah” three times.

ah-MIG-dah-lah

Now that I’ve made you look silly, let’s move onto the message. It’s an important one.

The amygdala is a tiny yet powerful part of the brain – actually another bunch of neurons. It plays a huge role in our emotions, particularly those related to survival.

That’s right – SURVIVAL.

Buried under the massive cortex, the amygdala is part of the lesser known limbic system which also supports motivation, learning and memory. The amygdala – along with the hippocampus – determines not only which memories are accumulated but also where they are stored in the brain.

This includes the pleasant, desirable ones – as well as the not-so-good ones we’d like to forget.

In addition, fear, anger and pleasure originate from inside the amygdala – each connected to our ability to maintain emotional regulation.

That’s right – EMOTIONAL REGULATION.

For my children who experienced early trauma and were later diagnosed with PTSD, the amygdala went into overdrive. It even increased in size – as the research attests.

With “flight or fight” right around the corner, how did I respond?

The wrong way – I’m sorry to say!

Since their brains were stuck in high gear, I escalated behaviors into a full-blown rage – more times than I care to remember. My children heard my words but couldn’t process the message. Sadly, they were usually re-traumatized.

And “flight or fight” began.

With my newfound knowledge of the amygdala, how would I respond today?

For starters, I would avoid the direct, in-your-face approach. Commands – or demands – like “calm down” or “you need to stop” usually do the just the opposite.

“What’s wrong,” “why are you upset” or any statement requiring immediate insight probably won’t help either.

Then what?

Based upon recent brain studies, I would put the much larger cortex – and its four lobes – to work and overpower the negative response from amygdala.

In other words, I would rethink “redirection” with highly intentional actions.

  • To engage the frontal lobe in reasoning, I might ask a relevant logic question based on fact – not a thought one based on emotion.Questions starting with “what, who, where or when” are a safe place to start.
    “What did you learn yesterday in math class?”
    “Where did you find your jacket?”
    “Who’s the relative you trust most?”
  • To engage the parietal lobe, I might try movement if my child’s agreeable. Exercise has long been associated with emotional regulation.
  • To engage the occipital or temporal lobes, I might try visual or auditory stimulation. Pictures or instrumental music often do the trick.

Now it’s your turn.

Since no two individuals respond the same, don’t be afraid to learn from trial and error. Frankly, you have little to lose by trying.

Lessons learned – wishing I had another chance.

Craig Peterson publishes EACH Child every Tuesday. To subscribe, open this link and “Like” the page. THE AMYGDALA – STOPPING FLIGHT OR FLIGHT AT ITS SOURCE

Craig Peterson publishes EACH Child every Tuesday. To subscribe, open this link and “Like” the page. https://www.facebook.com/pages/EACH-Child-is-Special-Working-Smarter-Not-Harder-to-Raise-Every-ONE/132153890292369

To learn more about Adopting Faith: A Father’s Unconditional Love, Craig’s soon-to-published memoir about raising six children with special needs, click here: https://www.facebook.com/pages/Adopting-Faith-A-Fathers-Unconditional-Love/297933993580946

To follow my son Andrew’s inspiring story, “Like” his special Facebook page https://www.facebook.com/andrewpetersongoesforthegold

 

Difficulties with Screening for #FASD in Adult Forensic Populations

Guest Blogger / Author:  Jerrod Brown

511ec-thewhitestwall1Fetal Alcohol Spectrum Disorders (FASD) is a group of disorders that does not lend itself well to screening, assessment, and diagnosis without proper awareness, education, and training related to the complexities of the disorder. The varied neuropsychological and dysmorphology symptomatology of FASD contribute to screening and diagnostic issues. Specifically, individuals with FASD typically have neuropsychological deficits (e.g., executive control, impulsivity, and decision-making) that require high levels of support and services, but can present relatively independently of intelligence. Complicating these already challenging neuropsychological symptoms, only around 10 % of individuals with FASD have visible signs of facial dysmorphia, which become less apparent as individuals physically mature into adulthood. This combination of symptomatology limits the ability of unprepared clinicians to render differential diagnoses and increases the likelihood of under-identification and misdiagnosis of FASD.

The identification of FASD is further muddled by a lack of reliable screening instruments in forensic settings, sometimes limited access to medical and historical records, and memory-related issues. First, the relative dearth of FASD screening instruments developed and validated for use in forensic settings, especially in adult populations only contributes to the under-identification of FASD. Second, gaps in current and historical medical records also make it sometimes difficult to identify the presence of prenatal alcohol exposure with any degree of certainty for adults. The fact that some individuals with FASD were adopted or involved in multiple foster care placements only decreases the likelihood of such records or access to the birth mother. Third, adults with FASD often have memory issues. This includes impairments in short-and long-term memory and the potential for suggestibility (e.g., inclination to agree with statements and implications of others) and confabulation (e.g., the creation of new memories from real and fictional experiences). As such, a clinician should not solely rely on information reported by an adult who possibly has FASD without seeking out collateral sources of information. Working to resolve these screening and assessment issues and increasing the likelihood of early and accurate identification and implementation of appropriate services and supports offers the most promise in rendering desistance from involvement in the criminal justice system.

The varied symptomatology and screening and assessment issues of FASD emphasize the importance of awareness amongst forensic professionals. Unfortunately, there is a lack of general awareness of FASD among forensic professionals, which is contributed to by limited coverage of the disorder during education and advanced trainings. Further, there are few forensic experts in the area of FASD. Not only does this often leave many questions of how to deal with adults with FASD who are involved in the criminal justice system unanswered, but this lack of expertise also limits the potential of referral for specialized FASD assessments involving individuals in adult forensic populations. Complimenting this lack of knowledge in the field is a lack of adult specialized FASD-based treatment and intervention options in both community and confined settings. These shortcomings highlight the importance of implementing FASD awareness campaigns in adult forensic settings and expanded forensic-specific coverage of FASD in educational and continuing education settings.

Author Biography: Jerrod Brown, MA, MS, MS, MS, is the Treatment Director for Pathways Counseling Center, Inc. Pathways provides programs and services benefiting individuals impacted by mental illness and addictions. Jerrod is also the founder and CEO of the American Institute for the Advancement of Forensic Studies (AIAFS), lead developer and program director of an online graduate degree program in Forensic Mental Health from Concordia University, St. Paul, Minnesota, and the Editor-in-Chief of Forensic Scholars Today. Jerrod is currently in the dissertation phase of his doctorate degree program in psychology. Please contact Jerrod at Jerrod01234Brown@Live if you have questions about this article or would like a full list of references used for this article.

Confabulation (verb: confabulate) is a memory disturbance, defined as the production of fabricated, distorted or misinterpreted memories about oneself or the world, without the conscious intention to deceive.

The Whitest Wall by Jodee Kulp takes readers into the world of three individuals living in a regular community and demonstrates how this disability affects day-to-day functioning most people tilt their heads at but don’t understand. Winner of Best Young Adult USA Fiction (2012) Winner Mom’s Choice Gold Adult Fiction and Young Adult Fiction.

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