Meet Marissa – #31 of 90 Real People. Real Lives #FASD

Day #31 of our International Relay race is going to be more than just running – Marissa and Mac are going to tumbler their way around the world building FASD Awareness. Go TEAM!

MEET MARISSA – Marissa loves crafts, reading and watching her YouTubers. She won 2 gold metals at our finals for Special Olympics in gymnastics this year! She is currently making beautiful friendship bracelets. She’s a generous soul and gives everything away! Ha! Including the cash in her mother’s purse. LOL!

MY STORY – Born addicted, detoxed in the NICU. Found her forever family when she was 7 months old.

STRENGTHS – Sweet nature, loves animals and people, such a helpful girl!

STRUGGLES – Activities of daily living, understanding boundaries.

WISH – To be a vet tech!

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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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Meet TJ – #6 of 90 Real People with #FASD

It’s Day Six of our 90 Day Count Down to September 9 – And Mac been looking for courageous kids to stand with him in making a difference. Kids and their families are stepping up with their support and red shoes to share their lives. A Big THANK YOU! We’re loving the action. People are out strutting and jumping and rolling and climbing with their RedShoesRock.

Meet TJ – TJ is a fun teen with a big heart. He loves playing with his lizards and doing science projects. Like many teens he has dreams of getting a car, learning to drive and getting a job so he can grow to have his own apartment.

My Story:  Premature, born to parents who both struggled with substance abuse and mental illness.  Removed and placed in the system and placed then with aunt who became his forever family.

Strengths:  He loves to garden.  He loves trains.  He loves science projects and dinosaurs and playing with his lizards.  He loves helping people.

Struggles:  He struggles with full FAS, speech difficulties, sensory issues, fits under the Autism Umbrella and is bipolar.  He doesn’t understand why people are mean to him.  He is very concrete and is a highly verbal young man who doesn’t understand abstract but lives in a world of black and white.  He has a big heart and is very easily mislead and no one is a stranger.

Wish:  That he is allowed to get his own apartment and go to work.  He wants people to know even though he is very verbal he is often misunderstood by those who he parrots.  He hopes someday he can drive a car and get his license.  He wants to go to work and get a pay check.

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Meet Toya – #5 of 90 Real People with #FASD

Day Five of our 90 Day Count Down to September 9 – And Mac has been busy collecting friends and sharing them. We are so appreciative of each of you! We’re loving the action. People are out strutting and jumping and rolling and climbing with their RedShoesRock.

MEET TOYA – Hi, I’m Toya and I was born in Sacramento California on July 4th 1995. I was 1 pound and 10 ounces at birth and I was born to an alcoholic. I am now 20 about to be 21 in just under 3 weeks from now and I have an FASD diagnosis of ARND (alcohol related neuro-developmental disorder). I have a learning disability in math but my IQ is well into the gifted range (above 140).

MY STORY – I was born prematurely, went through many foster homes, experienced abuse and neglect prior to age 5, I also had 3 failed adoptions, and have been in residential treatment centers as well as in juvenile detention centers. Growing up with FASD has indeed been a challenge, but it’s also been a gift because I am a success story. I have a part time job and I attended college for a while but got stressed out but I do plan on going back.

STRENGTHS – I don’t let my disability define me, I am good at many things including singing, writing, art, empathy, and I never judge anyone.

STRUGGLES – FASD, certain social skills, executive function/impulse control, dyscalculia (math disability), PDD-NOS (closer to Aspergers), ADHD, RAD, sensory issues, and certain abstract material is difficult for me and certain things may need to be broken down for me so that I can process them better.

MY WISH – For people to understand and not judge, for people to not assume that just because I look and can act neurotypical, that I am not neurotypical. (That can be really frustrating). And to be treated the same as everyone else.

WHAT I WANT THE WORLD TO KNOW!

OK, so I have a pet peeve about the way that people refer to FASD (fetal alcohol spectrum disorders). They have said that it’s the most common cause of mental retardation (which is an old term still floating around the universe) or low IQ. The reason that it irritates me is that they say that is because most of us have an IQ that is either average, above average, or even gifted/very high. Some with FASD may indeed have MR/ID but most of us don’t. That is a stereotype that brain damage of all kinds inevitably lead to a low IQ which is extremely inaccurate. Those of us with FASD usually have a learning disability but mental retardation and learning disability are two very different diagnoses. Many individuals with learning disabilities have an IQ above 90 and can even be intellectually gifted. So please, anyone who hears people say that about those of us with FASD, don’t assume that just because we have an LD or brain damage, that we have mental retardation because chances are, we have a normal or above normal IQ. Thanks, Toya.

You don’t know what it is like to be me…

You have no idea what it’s like to be molested and raped before the age of 4.
You don’t know what it’s like to be in foster homes from the age of 4 to 20.
You don’t know the pain of feeling unlovable and unworthy of love.
You have no clue what it’s like to be 5 years old and move from foster home to foster home 6 times in a 7-8 month time frame.
You don’t know what it’s like to experience 3 failed adoptions as a young child.
You don’t understand what it feels like to have 2 parents who were/are completely unavailable to you all of your life.
You don’t know what it’s like to feel like something is missing in your life.

You haven’t been through the extensive childhood trauma that I went through so you’ll never truly understand. I hurt and push away other people because I’ve been hurt sexually, physically, and emotionally. I have put up a wall just to protect myself from further hurt. I’m not bad, I’m just living everyday with the memories of my past and it haunts me daily.

You haven’t lived my life or walked down my path, so don’t judge me.

EXCERPT FROM CDC WEBSITE (Read more at Centers for Disease Control and Prevention)

Types of FASDs

Different terms are used to describe FASDs, depending on the type of symptoms.

  • Fetal Alcohol Syndrome (FAS): FAS represents the most involved end of the FASD spectrum. Fetal death is the most extreme outcome from drinking alcohol during pregnancy. People with FAS might have abnormal facial features, growth problems, and central nervous system (CNS) problems. People with FAS can have problems with learning, memory, attention span, communication, vision, or hearing. They might have a mix of these problems. People with FAS often have a hard time in school and trouble getting along with others.
  • Alcohol-Related Neurodevelopmental Disorder (ARND): People with ARND might have intellectual disabilities and problems with behavior and learning. They might do poorly in school and have difficulties with math, memory, attention, judgment, and poor impulse control.
  • Alcohol-Related Birth Defects (ARBD): People with ARBD might have problems with the heart, kidneys, or bones or with hearing. They might have a mix of these.
The term fetal alcohol effects (FAE) was previously used to describe intellectual disabilities and problems with behavior and learning in a person whose mother drank alcohol during pregnancy. In 1996, the Institute of Medicine (IOM) replaced FAE with the terms alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD).

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

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

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.

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

 

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.

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.