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

Happy Saturday – Love Burst from Liz
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.

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.

Is it Time for the Creation of a #FASD – Based Legal Training Certification Program?

64274-thewhitestwall1Individuals with suspected or confirmed FASD commonly experience a wide-range of impairments that can significantly impair their ability to competently proceed through the complex criminal trial process.

To illustrate this point further, some individuals with FASD may be more inclined to confabulate, be suggestible under interrogative pressures and questioning, and provide inaccurate information sometimes leading to the possibility of wrongful conviction. As such, it is strongly suggested that all legal professionals receive continuing education on topics related to FASD.

To go a step further, the creation of a specialized FASD-based legal training certification program may be warranted. As part of a proposed FASD-based legal training certification program, the following subtopics should be considered:

FASD: An Introduction
FASD and Competency to Stand Trial
FASD and Confabulation
FASD and Executive Functioning Impairments
FASD and Sexually Inappropriate Behaviors
FASD and Social Skill Deficits
FASD and Suggestibility
FASD and the Juvenile Justice System
FASD in Correctional Settings
FASD: Case Law
FASD: Communication and Intervention Approaches
FASD: Ethical and Legal Dilemmas
FASD: Forensic Screening Practices
FASD: Offender Reentry and Community Supervision
FASD: Sentencing Considerations
FASD: Vulnerability and Victimization

-Jerrod Brown

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.

Fetal Alcohol Spectrum Disorder ( #FASD ): 10 Reminders for Helping Professionals

By: Jerrod Brown

64274-thewhitestwall11. The effects of FASD are irreversible. They can, however, be minimized and managed through appropriate therapy and supports.

2. Some individuals with FASD may struggle with fine motor skills and, as a result, become frustrated/easily angered due to difficulties in coordination.

3. School settings can be a problem for some students with FASD.

4. As adults, symptoms may become more obvious since the ability to plan and anticipate consequences continue to be impaired and the responsibilities of daily living are increased (e.g. this may negatively impact finances, housing, and other areas of life).

5. Some individuals with FASD live with the challenges of numerous secondary conditions (e.g. ADHD, Conduct Disorder, Oppositional Defiant Disorder (ODD), Reactive Attachment Disorder (RAD), Sleep Disorders, etc.).

6. Some individuals with FASD likely have experienced previous trauma (e.g. emotional, physical or sexual abuse, exposure to domestic violence, substance abuse and extreme neglect).

7. Some individuals with FASD may present as hyperactive, impulsive, and tend to have poor social skills.

8. Misdiagnosis and under-diagnosis of FASD is common.

9. Social and emotional development deficits are common for some individuals with FASD (e.g. a child with FASD who is 18 years old chronologically, may be functioning developmentally at a much younger age).

10. Deficits in executive function are common (e.g. difficulties in problem solving, impaired judgment, poor decision making skills, diminished ability to comprehend the cause and effect of their actions and behaviors).

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 five 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.

Fetal Alcohol Spectrum Disorder ( #FASD ) and the Law by Jerrod Brown

Concerns of FASD commonly come up during different portions of legal processes (i.e., police interrogations, waiving Miranda rights, entering pleas, standing trial, providing testimony, and sentencing).

64274-thewhitestwall1For example, the confessions of suspects with FASD and testimony of witnesses with FASD are often called into question, given the memory, communication, and social deficits of the disorder. Further, FASD may interfere with a defendant’s ability to comprehend legal proceedings and participate in their own defense. Finally, diagnoses of FASD may be considered as mitigating evidence during the sentencing of a defendant, particularly in death penalty cases. Thus, the presence of an FASD diagnosis calls into question the validity of many legal proceedings

-Adapted from Anthony Wartnik, Jerrod Brown, & Sarah Herrick, 2015

The Whitest Wall by Jodee Kulp takes readers into the world of five 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.

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.

#FASD the lonely hearts club?

Desi and Jon are social extremists and when they are by themselves, not in a social situation, they are in pain and lonely.They both tend to deal with loneliness by sleeping.

Desi and I just had a chat about this. Why is she lonely all the time and why does she feel so needy?

She said that when she is alone, she feels abandoned, rejected, and just not happy. When she is with people the hole inside her is being filled up.  So she constantly craves friends to talk with, be with, have relationships with.

The sad part of all of this is that her need is so great that she often smothers her friends with demands and soon they are no longer her friend. Thus she ends up feeling more rejection, loneliness and despair.

This is a HUGE problem for my two kids with FASD. 
They seem to plan their whole life around social events.

With support to get up on time, get daily household chores done, and a ride to work, Desi is able to hold down a part time job. 

She works at a thrift store.  

  • She is able to manage a register pretty well that tells her how much change to give back, and she LOVES being with people. 
  • She can chat all the time during her job with new customers and her co workers. 
  • This is rather fun for her and since she has some pretty amazing co-workers, she is very happy there.

Her job fulfills her need to be social. 

I love that for her. She always comes out of there bubbly and chatting with everyone and I feel good when she is happy. However in her personal life, I have watched her go through friends on a frequent basis. Especially boy friends, but also this happens with girlfriends.

There are a few reasons for this. 

  • She is socially and emotionally immature for her age.  This started to show up at about the age of 16.  Gradually friends were dropping out of her life.
  • She also can get bossy and demanding and who likes to be treated like that for long? She is so needy that she suffocates her friends at times.
  • Once she has a friend, that friend is going to be hearing from her a lot. She can just drain them dry.  One wonders why she hasn’t yet met her carbon copy and wouldn’t that solve the problem? I mean someone who might need her as much as she needs them? :)

Desi and Jon both have little ability to be creative about their lives. 

Organizing and planning are a challenge so  having creative hobbies is difficult for them. Their lives are kind of “empty” outside of their job time. They need their external brain to be there partly just so they are not alone and to manage their empty time.
They both sleep most of the day and get up with no purpose or plan for the day, and both need prompting to get important things done, or these tasks won’t be completed. Then comes the free time. They would sit  there with nothing to occupy it, unless they can find a friend, a party, some where social to meet with others.

Another reason I believe they both sleep a lot if there isn’t anything going on socially, is depression. When you are running high on social events all the time, it burns up adrenaline. 

Too much adrenaline burns up serotonin.  

These kids are born stressed and a lot of them deal with mood disorders. Their bodies are always in high alert and using up adrenaline. Adrenaline is a drug of it’s own type. It masks pain.

When something really bad happens in our life such as the sudden death of someone close, a person can go into shock. They won’t feel pain for days. The reason for that is the large amount of adrenaline that is rushed through the body. It shuts down the pain receptors.
So keeping life on a social high also helps our kids shut down the pain receptors, but in reality it also burns up serotonin which can cause the vicious cycle. This kind of keeps them on the wheel of seeking people to fill them up on the inside and take away their pain.

They are often  very bored and both of them will often  just go back to sleep to avoid dealing with that pain. Sleep can be a good thing for them, as it can heal the stress on their body, but too much of it isn’t healthy as it hinders their body’s need to get oxygen and exercise.

As  an “external brain” I find I do need to use gentle suggestions to Desi that maybe she needs to slow down a bit and get some normal sleep. Or maybe tonight needs to be a sit in night just for some down time. When she runs too much, she begins to show it in mood swings.  OR maybe it is the opposite. Maybe now she has slept too much and I need to make her get up and get moving a bit. Then of course I need to help her keep occupied or she is lonely again and wants to go back to bed.

They are adults and we can’t make them do anything, but I find myself trying to help her manage her sleep, resting times, exercise needs and social life too. :)

My heart does hurt for the loneliness that my kids deal with.  I am here. They know that.
DARN FASD!  Stole my kid’s abilities to occupy themselves.

Lord send good and positive friends into my kid’s lives.

Terry Quinn

5 Star Approach to Healing #FASD by Victoria Deasy




Guest Post – Victoria Deasy

Whether a child has a diagnosis of Fetal Alcohol Spectrum Disorders (FAS, ARND, Partial-FAS, or anything in between) or a suspected exposure, the few professionals who know something about FASDs, along with the literature, talk about the ‘permenant brain damage” that ensues. Damage to the brain is certainly accurate but ‘permenant’ may no longer be true. We have learned a lot in the last 5-10 years about how plastic the brain is, how different parts can heal or take over for other parts, and how new neurons can grow over time. 

Because of these new neuro findings, we need to look at FASD a bit differently.

It should be noted that the alcohol that damages the brain damages different parts of the brain in different people. Some of this can be because of the amount of alcohol ingested, the time just before and during pregnancy in which the mother was using alcohol, the number of occasions in which the woman drank, the nutrtional state of the mother before and during the pregnancy, whether other drugs were also ingested, if the mother smoked, lived an unhealthy life-style, received pre-natal care or not, what kind of emotional life the mother was experiencing (whether she was abused, under stress, etc.) and many other things that could affect the fetus at anytime, with or without the alcohol exposure. Add these things to the alcohol exposure, and the direction of the damage is on its course. 

There are also the things that happen to a child after birth. 

There are traumas: 
  • If the infant is placed in an unstable household, the brain changes some more; if the child is placed in an orphanage, especially an orphanage where children are not held, caressed, nourished, allowed to move, spoken to and sung to, the brain has less of a chance to grow and develop properly; if the child is abused or harmed in any way, there are more doors shut to proper brain growth and development. 
  • Even if everything goes very well after birth, if the child is adopted, even right out of the hospital, there is “trauma” in the mere fact that the child has been removed from the birth parent to which there has been a nine-month bond, a bond that is now broken. We usually can’t separate out all the things that make up our children, especially if they are adopted and we don’t know for sure all the things that have occurred to create the brain and brain damage that is now part of the whole picture called FASD.

I often have people ask me what we have done to try to heal my son’s FASD. I can tell what we have done but I cannot tell others that all of this will work for them. I feel very strongly that what we have done (some learned from the autism community) has been very effective. I also have to say that it took years and years of trial and error to get all of this put into place. I can’t help but wonder if we had done all the interventions earlier, if things would be even better. But, one cannot dwell on such conjectures. We did this on our own, unable to find doctors who knew anything that would help us. Now a days, there is more help out there and I would suggest that finding doctors who can help, would be the best route. 

Some of us will need to teach some of those doctors and some of us will need to forge our own paths.

There are 5 intervention strategies that I think are vital: 
  1. Nutritional Therapies (diet, supplements, chelation, etc.) 
  2. Neuro-Movement Therapies (NeuroReorganization, Musgatova, Rhythmic Movement Training, HANDLE and the like)
  3. Therapeutic Parenting (Heather Forbes, Bryan Post, Howard Glasser, and others), including psychologists/ psychiatrists, when needed
  4. School Choice (the child needs what s/he needs, not what is apparently available; this can include Montessori, Waldorf, homeschooling, unschooling, small private school, special ed school)
  5. Belief System (not necessarily religious) and a ‘village’ to support such. I think if these things can be put into place so as to keep the child calm, non-anxious, feeling cared for instead of experiencing constant punishment, anxiety (of things that no one knows are anxiety-producing), and feeling worthwhile, then healing has a chance. 

Nutritional Therapies: for us, this started with eliminating all food dyes (Red#40 made my son almost bi-polar!) and to keep them out of shampoos, lotions, toothpaste, etc., because these are absorbed through the skin; eliminate all chemical sugars, all corn syrups (not just high fructose corn syrup), and to go as organic as possible, eat grass-fed beef, eat chicken and eggs that are hormone and anitbiotic free and which are free-range. A lot of children may need to be taken off casein (most dairy products) and/or gluten (most grains). For those who are nervous about their child not getting enough calcium from milk, just remember that calcium can be found in many other sources and there are many substitutions for cow’s milk. 
  • Our next thing to try was Omega-3 Fatty Acids (per THE LCP SOLUTION by Jacqueline Stordy, a book I found in the library, somewhat by accident). I had to research this even more and figure out dosages but there is a lot of information in THE LCP SOLUTION, even the brands used in actual research. We chose one of those brands, but I don’t really know why we chose the one we did. I was to discover several years later, that this brand has extra Evening Primrose Oil (EPO)and when we ran out and I gave my son my store-bought omegas, I noticed some regression (especially with hyperactivity, impulsivity, etc.) I went back to THE LCP SOLUTIONS and discovered some studies which showed that about 15% of boys didn’t do as well on Omegas until they added the EPO and then, they came up to the levels of the other study participants. Even though we have now switched to krill oil (for more bio-availability), we buy one for women because it has the EPO in it. This may or may not work for others, as well. 
  • Over time, as I researched and researched, we eventually added stomach enzymes, amino acids, extra Vitamin Bs, extra Vitamin D (only after a blood test to determine my son’s levels, showing how deficient he was)and then, added choline (per studies by Dr. Ed Riley, et.al, at San Diego State University. It took awhile to decide on doses but per the Linus Pauling Institute at Oregon State University, I at least knew what the ‘adequate’ doses would be (adequate meaning enough to keep someone alive). It also listed the possible ‘toxic’ amounts, an amount that was so high that no one would ever get that high. Later, I learned about piracetam. This is a synthetic and not for everyone. I started my son on this at age 17-18 and his senior year in high school was astounding, compared to all his other years in school. 
  • The choline affected my son’s memory…all for the good. 
  • The piracetam also affected memory but for the first time, he knew what his school assignments were, knew when to hand them in, actually handed them in, juggled his long-term projects, began to feel bad if he made a mistake, felt awful if he forgot an assignment….he actually would shake his head in disbelief when fellow students would do the exact silly things he used to do, only now he couldn’t believe how ‘stupid’ they were being (his word, not mine). 
  • These nutritional changes helped to get the Therapeutic Parenting into his psyche.

The Neuro-Movement therapies helped to re-organize 

his very disorganized brain and nervous system. 

Each part of my star helped to fortify the other points. I chose the right schools (I only knew this for sure after the fact, of course) and found other people, at school and at a church I joined just for what my son needed, to nourish my son, to help him along the way, to understand him in all his ‘differences,’ to give him the examples that his ‘chameleon self’ needed. 

Is my son “cured” of his FASD? 

No. There is no cure, as of yet. But, healing can take place. It’s like children who have polio: do we leave them in an iron lung or do we do something so they can be in a wheelchair or using a walker or crutches or even, to get through life with just a limp. We are working towards the limp! 

Is any of this easy? 

Heck no! Trying to raise a child with FASDs is probably the most difficult thing any of his will have to do. We have children no on seems to understand, we get no help, we seem to have to fight for every little thing our child needs, we are blamed for their behavior, we are blamed for not parenting them well, we are blamed for letting them get away with poor behavior….

So, let’s be the change we want to see. 

We will do whatever we need to do to heal our children. We will fight for them, guide them (even as they try to get us off their backs), support them, and keep them close and safe for as long as they need us to do this. 

And then, let us give them a chance to spread their wings and try life on their own… but knowing that we tried everything we knew how to get them to that place.

#34 Days to FASDay – Battle of the States

Let’s do something big!!!! 

Laura Nagle and the Kentucky folks have challenged us to a state-by-state Battle of FASD Awareness…. 

Hey Fetal Alcohol Spectrum Disorders Advocates,

Want to tip over a boat together? See, we have a problem. You already know what it is: women are hearing some very confusing messages in the media about drinking during pregnancy. Instead of wasting any more time complaining about it, think about what could happen if this TEAM of ours moved fast to the same side of the boat. In May, we did a survey to identify our first collective target and the lucky winner is: Dr Oz! (A great choice, y’all — when he recommends Chia Seeds, the Chia Seed People run out of stock!)
Our Vision:
Between August 5th – 15th, Dr Oz’s production staff will receive 5,000 emails requesting that he dedicate a segment of his show to this public health issue. (Do you think they’ve ever gotten 5,000 emails about a single topic in ten days before???)
We are not going to argue the science of small amounts of alcohol on the brain. Instead we want Dr Oz to be gripped by our concern that messages about “safe” drinking are being misunderstood, twisted and passed around among women – and therefore, No Alcohol is the only no-risk public health message. We will be compelling, passionate and informative in our short emails. We will give it our best shot and feel satisfied knowing that we did SOMETHING.
I’ve made it easy for you!!!

Here are three different examples of short message you can send to the show. If you can, please personalize it with your particular brand of passion for this issue. If you don’t have time to add a sentence of your own, PLEASE still send one of these templates.

Sample Emails for Dr. Oz
Lately women have been exposed to an alarming number of media messages stating that it’s ok to drink small amounts of alcohol during pregnancy. It worries me that we are creating a generation of young women who believe that they can safely drink while pregnant. Alongside these headlines, women also need to hear the research that unequivocally states that alcohol is a neurotoxin – a poison to their baby’s developing brain. Is there a safe amount of a poison? Each woman gets to make her own decision about that – but it’s unfair to expect her to make that choice without giving her all the information first. I’m asking you to please devote a segment of your show to this timely public health issue. The only no-risk message for all women is No Alcohol During Pregnancy.  For more information, please contact Kathleen Tavenner Mitchell, Vice-President and National Spokesperson of the National Organization on Fetal Alcohol Syndrome (NOFAS): (202) 785-4585 or mitchell@nofas.org
In June, all major news media ran headlines stating that drinking during pregnancy might be safe. Each woman does have the right to make her own choices about her pregnancy. However, it’s unfair to put her in this position without making sure that she has accurate, factual information with which to make her decision. When the media tells a woman that it is safe for her to drink “lightly”, is she also being told that alcohol is a widely documented teratogen, a substance proven to damage or kill cells as they develop in the fetus? Unfortunately a woman has to sift through advice from friends, stories from neighbors and contradictory magazine articles in order to make a decision on behalf of her unborn child. I’m asking you to please devote a segment of your show to this timely public health issue. The only no-risk message for all women is No Alcohol During Pregnancy. For more information, please contact Kathleen Tavenner Mitchell, Vice-President and National Spokesperson of the National Organization on Fetal Alcohol Syndrome (NOFAS): (202) 785-4585 or mitchell@nofas.org
I’d like to bring to your attention an issue that is very important to me – drinking and pregnancy. There is a lot of confusion among young women about what “level” of drinking is safe. Is it fair to tell women that it’s safe to drink when they’re pregnant – and then blame them if their child has problems later on? Biological mothers of children with Fetal Alcohol Spectrum Disorders experience blame, shame and stigma while pregnant women are being advised on national television that drinking during pregnancy is safe. No one can control how a woman interprets the message that “light drinking” is ok. Do the media tell women it’s ok to smoke just a little when they’re pregnant? Consume just a tiny amount of lead? No. Women get very clear guidance on these subjects. With alcohol, women are left to make a weighty decision without hearing the fact that alcohol is one of the most damaging substances to a fetal brain. I’m asking you to please devote a segment of your show to this timely public health issue. The only no-risk message for all women is No Alcohol During Pregnancy. For more information, please contact Kathleen Tavenner Mitchell, Vice-President and National Spokesperson of the National Organization on Fetal Alcohol Syndrome (NOFAS): (202) 785-4585 or mitchell@nofas.org

Here’s the link to the website – I tried it out and it took about 90 seconds to follow the link, type in my info and copy / paste one of these templates. 

You can tip over the boat for babies and their mamas in THREE TINY STEPS:

  1. Contact the show yourself. Seriously, it takes 90 seconds – and every email matters. In the drop-box Subject line, choose “I HAVE AN IDEA FOR A SHOW”)  http://www.doctoroz.com/contact
  2. Pass this email on to all of your contacts, with your endorsement.
  3. Click on our survey – it only has one question: Where Are You From? https://www.surveymonkey.com/s/HelloDrOz

We want to credit every member of our FASD Team. We’ll post the State-By-State results on our website for FASD Day – and we’ll figure out something snazzy to do for the winning state.

(Let me warn you –
Kentucky is gonna be hard to beat!)

Little things add up to big things. Just look at what Bonnie, Teresa and Brian did in starting the original idea!!!! Thank you for being a part of this.
With joy and gratitude,
Laura in KY
Please visit Kentucky’s Fetal Alcohol Spectrum Disorders website at www.kyfasd.org
and find us on facebook: Fetal Alcohol Spectrum Disorders Kentucky
Online Manual – www.fasday.com
Seminar – Or try our easy, effective, exciting 1½ hour program that walks you
 through the morning of Sept.9: http://www.come-over.to/FASDAY/ABCDEFG/ 
(material from 2002 has excellent ideas)

Follow us through the next 60 days and plan your local or personal project to build awareness of fetal alcohol spectrum disorder – Each One Can Reach One!

Follow us through the next 60 days and plan your local or personal project to build awareness of fetal alcohol spectrum disorder – Each One Can Reach One!

Need family support visit www.toolboxparent.com
Need ideas for adults living with challenges of FASD visit www.braidedcord.net
Need information on fetal alcohol spectrum disorders visit www.betterendings.org

Translating the world for a person with fetal alcohol


In an abstract world a brain that thinks concretely may need help with interpretation and by having a cognitive translator our daughter can avoid mistakes and frustration in professional meetings in finance, social welfare, medical, and the judicial process. When needed she enlists me as her cognitive translator and I attend the appointment or meeting to make sure the communication between the professional and my daughter is understood.

To translate I make myself an only when necessary piece of her conversations. I may bring a magazine to glance through to look busy or I may catch up on a text message. I make sure to give her the space she needs to manage herself and remain in charge. If she gives me a preset signal, I interject into conversation for clarification. After the end of the meeting I ask for a recap of next steps or meeting.  Cognitive translations provides safety to remain on course and navigate through complicated adult discussion, keep her trust in the professional and increase skills and knowledge.

When she trusts and feels safe she is able to manage more complex situations. With time and experience, she manages her life challenges.

While some professionals consider my attendance a hindrance to her progress I wonder how clearly they understand the brain and metabolic system of a person with fetal alcohol.

For example:

  • In a therapy session for anger management, a therapist described the range of emotions: “Emotions are like waves, there will be low times and high times and if you wait through a low time you can ride the wave up to a high time. Then you will ride the wave back down. Like this.” (Therapist demonstrated with her hand a waving motion.)  I remained silent, watching my daughter process what she heard. When we arrived in the car, I said, “Your therapist had a good idea today about managing anger, tell me about it.” She replied, “I don’t get it, why would she want me to ride in a wagon?”  

Why did this miscommunication occur? 

First, we live in Minnesota so she has no experiential frame of reference for a large wave. (Professionals must think what experience this person has that I can connect new learning to) Second, she took “wa” sound and assumed her auditory processing issues had confused her once again. “You can not ride a wave on a Minnesota lake. If you ride on it, could it be a “wagon?” 
How many times “What we say” is not “What is received?

  • At a job placement meeting, a counselor stated, “I am a realist, do you think senior citizens would like your hair?” “I am a realist, do you think senior citizen’s would like your clothes?” (And she continued with more questions beginning with “I am a realist”) When we reached the car, my daughter turned to me and said “Why would a Realtor care how I look for grandmas and grandpas. They like me just how I am.” I was glad she had missed the professionals point.
  • One adult I have translated for begins nodding her head when she “does not” understand. This provides two results – “The person explaining believes understanding has occurred and stops talking.” Another polite adult states, “Thank you so much for telling me that, now I understand.” Only later in the safety of her home do you realize the words understood were hot air.

As a cognitive translator, I do not consider myself an external brain any more than I would consider a seeing eye dog an external brain for a person who cannot see. 

My daughter’s brain is beautiful – very different from mine and very capable. In a world that has moved from agricultural to industrial to informational and now to communication we have left this population behind. I do not believe my daughter is a lesser person because of her challenges. She is a strong, dynamic adult with valuable insight into a world that often seems to talk too fast and too much.

Cognitive translation empowers versus de-powers.