Let’s Understand the #FASD Meltdown – 8 Reasons and How to Help Us

 

fasdisreal-savvanna

Internal Understanding of
FASD Nuclear Reaction Meltdowns

 

Guest Blog by Savanna Pietrantonio

Savanna is one of our beloved FASD Survival Strategy Teachers

In an effort to reframe my understanding of meltdowns I’ve had to look deeper into the meaningful gifts of the meltdown and to change my fear and shame into acceptance that they are always going to be my body’s unique way of communicating with me.

I can go about my life for weeks accomplishing, learning, overcoming and shutting off or hiding the FASD part of me. But I feel everything intensely and emotional and physical distress is a daily part of living with the disability. In my attempt to hide my disability, act normally and bury my feelings I forget that this is not being true to my disability or myself. And my body lets me know.   Usually through a meltdown of epic nuclear reaction proportions!

I have to learn to respect the meltdown as a symptom of brain damage. I am not being willful, rebellious, purposely destructive or hateful. My brain is telling me that something is wrong and I need to stop everything and ask for help to both get through daily life and to regulate my emotions.

I have discovered eight situations, which cause stress hormones to flood my system, and unfortunately my brain is not equipped to cope with the overload I am asking it to handle. Sometimes I can handle one or more, but as they add together as life often will, there may be no stopping the ensuing meltdown.

keys-to-FASD
Find your own keys that trigger our meltdowns. Understand them and then reach out to a caring support to walk through your next day safely.

Eight meltdown situations

  • Social situations where I have to “be on” for extended periods
  • A change in a set schedule or a plan I am expecting
  • Fast paced days where I am thinking and processing constantly
  • Or the opposite-days when I am wandering “lost”
  • Anticipation of an event even if it’s a positive one
  • After the event, the letdown and “what’s next?” feeling
  • Something new being introduced into my life- a skill or an object
  • An expectation that I fear I cannot meet

Neurotypical people can manage inherently as the brain balances their self-regulating neocortex with their limbic emotion regulating system—‘wise mind’ and ‘emotion mind’. My brain because of prenatal alcohol damage can’t do that. Messages between these two parts of the brain get stuck like tangled Christmas lights and I am triggered into an emotional spiral down the slippery slope to meltdown.

To the best of my ability I can tell you that the warning signs of a meltdown before or after any emotional high or low are there. Both my external brain and I must be on the lookout and aware of them. If the warnings are missed the overload becomes unmanageable. These signs present themselves ahead of the event or days to a week afterwards.

Compassion and understanding provisions us to walk into our complex moment and process safely.
Compassion and understanding provisions us to walk into our complex moment and process safely.

17 clues of an ensuing meltdown:

    • Restless, interrupted sleep, night terrors (others have vivid dreams)
    • My heart feels like it is racing and an uneasy sense of dread or urgency
    • Boredom (really not knowing what to do next-directionless)
    • Indecisiveness
    • My surroundings become cluttered (suddenly I can’t pick up after myself)
    • The tired but wired feeling
    • Inability to focus on one thing but the impulse to multitask to the extreme
    • Defensiveness and extreme sensitivity
    • Acting withdrawn and feeling alone and isolated or isolating
    • Itchy skin and breakouts
    • Fidgety movements like uncontrolled scratching (others may pick or bite a part of hand or area of body – bottom lip)
    • Easily frustrated to the extreme (slamming doors or verbal aggression)
    • Obsessions over unrelated things and agitation with them
    • A profound sense of sadness or unexplainable loss
    • The feeling my brain is full and slow, like when you overeat and your stomach feels uncomfortably full
    • Spending money carelessly and in excess

Pre-crisis—compassion

Before a crisis can occur its critical to stop the spiral by having a compassionate, understanding, non judgmental external brain who has learned not to take your behaviors personally, step in and guide my thinking, give me a perception check or just show care and not let me disconnect. This is not easy as my behaviors are shouting for help while pushing people away at the same time.

I may say something very hurtful when my external brain says, “What can I do to help you?”

“You can die!” I shout because I don’t know what he can do and my brain is no longer connecting to the part of me that can share thinking and feeling.

But there really are things he can do to help me and they really do bring down the energy and place my life back into a state of regulation.

  • Hug me and say I understand. “This is because…” and name it for me
  • Hold me while I cry and listen while I try to get my feelings out.  This may be for more than one day as perserveration is at its most intrusive
  • Help me pick up the scattered brain puzzle pieces and put them into order.
  • My external brain maneuvers my day, stepping in and canceling appointments or doing a task for me so that I can include self-care and put downtime into that moment.
  • Provide direction—one direction only please.
  • Break down my day or task into single doable steps.
  • Becoming compassionate and nonjudgmental.
  • Or I need to be told to stop all my activity and go rest.

And provide time for me to complete self-care:

  • Sometimes I need a complete escape and to have a fun, new adventure — this builds neuroplasticity.
  • I  focus on the foods that build a healthy brain-walnuts, salmon and dark chocolate—the magic trifecta for calming. Drink lots of water-mild hydration causes tiredness and fatigue.  And if we’re not talking nutrition- banana bread, carrot cake, mac & cheese, spaghetti. The things that comforted me in childhood.  Baking these things can be surprisingly sensory and calming.
  • Sometimes I need to get to a yoga class to reconnect mind, body and spirit or I need an aggressive cardio workout that burns off  the adrenaline and cortisol.

I need an intervention so that I can concentrate on the work of really surrendering to my emotions appropriately, processing whatever it was that happened, talking out my feelings and fears, feeling compassion for myself and coming to a letting go of it. It is exactly like the work of the grief process. If I skip this step, the symptoms become very aggressive and I am propelled into full fight or flight reaction and I explode with emotion and nothing and nobody is safe from the destruction or self-loathing I feel. This is where I can hurt myself, others and possessions. (Note: some people shut down and freeze.)

Handling a meltdown with love

While my external brain or myself can’t always read my bodies clues, I have learned to meltdown more appropriately as I begin to trust the process.

We have set some guidelines:

  • I can’t run away, especially by driving, but staying in trust and working through the intense situation and he can’t leave me at that moment or I am unsafe.
  • No arguing when glass things are within throwing reach – find a safe open place to work through the issue and I have a sensory or squishy toy in my hands instead.
  • No swearing (this is so hard when I don’t have words).
  • A pact I made with God and myself is that I will not engage in self harm or use substances. Ever!
  • I am not to strike out in anger at him.
  • I am not to say hurtful, blaming things to him about the past.
  • We have personal space boundaries and if losing it is imminent my external brain cannot—imperatively—cannot react with anger and punishment or aggression and he must not come into my personal space.­­

Sometimes though unfortunately he has to just hold me down and use extended breathing techniques and calmly stroke my hair and tell me I am loving and loved, all is well and I am safe in a soothing voice over and over again while I kick and scream and cry until I am exhausted and its all gone and I’ve let go of my fear, urgency and panic.

Triage after the storm

Afterwards the storm really is over and I can be helped into a calm environment where he can prepare a bath (running water is soothing) with dim lighting, zen music and calming lavender or other essential oil, while I drink a magnesium supplement or I need to be soothed to sleep with weighted blankets and soothing guided meditations playing while he rubs my back or uses tapping on me.

It is possible to get to the place on the other side of the meltdown to where you can look at it and see where intervention might have stopped the spiral and what might we do differently for the next time. And reinforce that what my body was telling me is that I need to heed its signals. By understanding and reflecting back I can empower myself when I list these and review them.

The gifts of the cathartic meltdown are the stillness afterward that allows for more clarity   It allows me to see what I need to let go of and what I need to clear space for. It reminds me that I can empower myself by respecting my FASD and that I have to act authentically and within my own trueness not separate from it but within in.

I no longer need to feel shame, as I know God made me exactly how He wanted me to be with unique built in ways of communicating my needs. I’ve come to embrace and be comfortable in the discomfort knowing that every emotion felt will pass if accepted and felt with compassion.

I can return to the path of “Buddha-nature that is found within suffering and our relationship to it, not by escaping it.” 1 The taking care of self becomes easier and better the more often you do it and the more your heart and soul become aligned. After all, the Spectrum is halfway to spectacular.2

Sources:
1 Kiera Van Gelder
2 Koren Zailckas

 

 

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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.

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.

The BIG EVENT living with the challenges as a adult with #FASD

rjcat
R.J. Formanek is the founder of Flying with Broken Wings on Facebook which now has over 1000 members flying together.

 

Special thank you to guest blogger
— From R.J. Formanek –

R.J. is one of our beloved FASD Survival Strategy Teachers
And so this is Easter or Passover or Christmas or the BIG CONCERT. . .

We’re down to the home stretch now, only a few more sleeps to the BIG EVENT.

My son goes to spend the holiday with his mom, because as every body knows – nobody NOBODY does Christmas like MOM! 🙂 

2014-04-12 09.28.52
I don’t do decorations or lights or … ask your kids what overwhelm them and find a quiet alternative.

That leaves me and two cats to have fun ourselves.

And we do! They get presents and some special food too! 
  • There are no decorations at my home, no sounds of Christmas choirs or jingle bells.
  • While there are a few paintings and prints in the living room, my own room is bare white walls, save for one small picture of my daughter.
  • I hide the modems because the blinking lights tend to throw me off after a while. And between the computer, the cable box and the telephone we have a whole lot of blinking lights all over the place. So, no need for Christmas lights as far as I’m concerned! LOL!
It sounds bleak to some, but to those of us living with FASD it feels safe and comfortable.

There are times when we just need a break from all the lights and sounds and my home is where I can do this.

2014-04-12 09.52.11
A snuggly blanket – warm and safe – this is the prayer shawl Jodee Kulp wraps herself in. Each stitch was knit with a prayer for her.

Being a safe place for me sometimes means the exact opposite to my apartment though… it’s the place I can let down my guard and show my frustration at the world, or myself in that world. It’s where I giggle like a little kid while wrapped up in a snuggly watching cartoons, or at this time of year It’s A Wonderful Life. It’s the place I can stop and try to figure out the world outside. It’s the place I melt down.

😦 It’s also the place I build myself back up again. 🙂

Through the years I’ve had to learn to become quite a handy man, thanks to this “thing” I’ve fought all my life.

I can mend a door, change a window, patch a hole and paint like there’s no tomorrow.

Sometimes though, I don’t repair these things… I leave them as a reminder of what can come to pass. People see this damage and go “oh that’s terrible” and all that… but what they don’t know is that same damage is forever imprinted on my soul. I’m not proud of that damage, it’s not something I ever wanted to be responsible for… no it is a shame I have to bear. And not forget what can happen IF I allow myself to get into that frame of mind.

Understanding FASD has made me understand just how very important self soothing is to an adult like me.

There is no one else to do it, and I can’t be melting down or shooting off every time some thing does not go to my liking. Having a person I can trust as my external brain helps me understand many things, but some times I am the only one who can prevent or at least lessen these things from happening. And that is just how it should be.

If I want to be independent then I have no choice but to accept and deal with my own actions.

“I am the Captain of my fate; I am the Master of my Soul”. Understanding that it is because of the FASD that I have a hard time regulating myself emotionally has given me the tools to “fight the beast”.

Knowing and understanding has made all the difference.

I’m so much better than I used to be in this area, but sometimes I still kick a door jamb, or suddenly let loose with some loud expletive… but it is getting better and better. I never thought there was any way to fight this, but I am learning that knowledge really IS power. I CAN beat this thing and I will.

Taking care of myself… eating, sleeping and that sort of thing and a good amount of physical exercise also help to no end.

It is reactive anger and I work at stopping the reaction that causes it to spill out into the world. 

No one can see my confusion and pain, nor can they see my frustration.

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Sometimes I just need to GET OUT of the event! To regroup and be able to return at peace.

I get frustrated that I feel like this, and that leads to added frustration because I feel frustrated for feeling frustrated. Make sense? No… but that’s what it’s like… sometimes it’s a loop I get stuck in. Fun, huh?

So, this holiday season don’t forget how all these sensations and emotions can give us need for some quiet time, for a place we can just relax for a bit. I have to hand it to a great friend and her family… they invite me for over to celebrate in friendship and don’t bat an eye if I suddenly have to go outside for a walk, or stand instead of sit, or walk from room to room… or just sit quietly.

I really enjoy being able to share the festive season with them all.
Everyone I hope you all have a Wonderful and Safe Holiday time… no matter your beliefs or values, we could use more of this “Peace on Earth” stuff!

And that is my wish for each and every one of you**********P E A C E**********

Expressing a voice for the voiceless encouraging the building of better baby brains – http://www.betterendings.org

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

Are you a trail marker or a barrier?

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

Rules of Marking a Trail for Self-Discovery

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

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

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

When I began this walk in 1997 – my first understanding and slogan was a “voice for the voiceless” I am proud to say – YOU the adults with FASD are gaining THAT voice!

As we rolled out our first ideas over the past week we changed hearts and thinking. Hopefully we healed others. Hopefully we prevented future harm to the next generation. We have been blessed on this first week – special thank you to our people FASD Survival Strategy Teachers.

Thank you for being my teachers
Jodee

2 Big Tips to Tackle The #FASD Anger Monster by R.J. Formanek

FASD SURVIVOR TEACHERS  From Left to James Gideon, Myles Himmelreich. Emily Travis, Tanya and R.J. Formenak
FASD SURVIVAL STRATEGY TEACHERS – Thank you – We look forward to hearing real wisdom from our guest bloggers in 2014!
From Left to James Gideon, Myles Himmelreich. Emily Travis, Tanya Northcott and R.J. Formanek

Special thank you to guest blogger
— From R.J. Formanek –

R.J. is one of our beloved FASD Survival Strategy Teachers

Learning how FASD affects each of us individually can make a huge difference in understanding and managing our anger.

  1. We can learn what our sensory needs are and how to take care of them.
  2. We can learn how to deal with people in public so as not to be embarrassed by our own actions or words…

But, and here’s the BIG BUT!
first we need to accept and understand.

Many ignore the fact they are living with FASD, and this is one case where what you don’t know can hurt you, but once the light is turned on and we begin to understand ourselves… not through someone else’s eyes but through our own hearts and brains we can learn to lose that anger. We can calm down… but understand that we may always have ‘short fuse’ at certain times, and that we may remain a ‘work in progress’ for some time.

Anger can take on many forms and for many reasons.

  • If we are talking reactive anger to a perceived threat or insult that can be one thing, generally emotionally based.
  • If we are talking frustration based that can be addressed short term as many have stated above; long term – sensory needs, past trauma as well as any lingering secondary mental health conditions caused both directly and indirectly by FASD need to be checked as well.

Now RAGES… that is a whole different monster.

And I do mean monster. These are the total meltdowns that get us in trouble, the ones that destroy things and hurt people. These are the ones that give us such a bad name with many.

What ever the immediate cause, RAGES are the result of physical brain damage. Short and simple. Many of the “higher learning” centres in our brains are scrambled at best, destroyed at worst and there is almost no way of knowing which ones will still work, and which won’t. But our brains are amazing things, because underneath those higher learning centres is a base… an “animal” or “reptilian” brain that is largely in charge of the functions we don’t even think of… temperature control, physical needs (hunger, thirst, water etc) and defense.

When we feel threatened our brains which may or may not be able to understand fully what is happening may revert to the base “fight or flight” syndrome and react accordingly.

This can often be the end result of too high stress levels, emotional trauma, or pain of some sort… or actual physical danger. It’s the same thing that makes people scream and jump when they see a spider dropping towards them from the ceiling… we all have it built in… but it just serves our FASD brains a lot more than a neurotypical persons’ might.

Understanding rages is very important so steps can be taken to minimize the number of them, and understanding how to recognize the signals and take steps to head off this oncoming rage can make a huge difference.

Sometimes, a punching bag is a great investment.

And remember – When you know one person with FASD you know ONE PERSON with FASD! – That’s it! Alcohol destroyed different parts and connections in each of us…. Yes, we are a big puzzle!

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

Learning to see the trail by walking in the forest
What wires together fire together and for our WHOLE lives our brains continue to grow as we continue to experience new things. In Live Abilities natural classroom program we mark trails for self-discovery. Joyful self-discovery allows a person the greatest learning opportunity. Because our learning strategy begins with a trail guide marking trails our participants must first learn to look and see the markers of opportunity.
A forest is filled with exciting experiences-a line of ants helping each other carry a dead insect carcass to their hill, the calls of different birds, the chatter of tiny creatures, footprints heading in unknown directions…  
Nature allows us to think outside of our inner thoughts. 
Natural movement in natural settings through play allows us the opportunity to GROW NEW BRAIN CONNECTIONS.
   “Scientists are discovering that physical activity alone is enough to trigger a boost in brain cell proliferation and that specialized exercise programs may help repair damaged or aged brains.  For twelve years in Denmark, an experimental School in the Forest for kindergartners proved an innovative and effective way for children to develop school readiness skills. The children climbed trees, ran, played games, developed their imaginations, explored and learned about their surrounding world with their teacher. The results were first graders ready to learn.
Getting your arms and legs moving and the heart beating faster increases the blood flow to the brain. This blood keeps our brains healthy by feeding our neurons with oxygen and nutrients.
Our yard became a playground with balance structures, hammocks, tire and porch swings, hula hoops, bubble blowing sticks, chalk and jump ropes as neighborhood teens joined in the fun to help Liz. We all had a reason to go back to child’s play and have fun doing it. Who said any of us should outgrow childhood?
The sun smiled on us as we climbed new mountains and planted gardens.  Fourteen years after Liz joined our home, she finally rolled down hills and played sidewalk games. Liz smiled at the snowflakes as they fluttered down on a cold night. She stuck out her tongue in a rain shower and caught raindrops on her face. The time arrived to make snow angels and take walks in the rain.”
Can we create new neural pathways? What can you discover in these two pictures? There are thousand of opportunities to learn  through experiences in a natural classroom. Click each photo to see what you can discover when you look deeper.
Many thanks to Jim Strohecker (Jim@healthy.net ) for his original idea about the sensory awareness walk listed below. In honor of the people I love I keep sharing what I learn. Blessings to families and persons living with prenatal exposures to toxins—together we can make a difference.
Try a Sensory Awareness Walk this week and leave a comment about your experience. In the beginning and perhaps for some people forever – please do not mix the modalities.
  
BREATHING WALK
  • Begin by allowing your mind to focus on your breathing as you walk. Simply notice your breath. Don’t try to do anything with it. Just notice.
  • Where in your body do you feel your breath? Your abdomen, chest, back, or even high in your collar bone?
  • What do you notice? Is your breath smooth, rhythmic and easy? Is it hesitant, sporadic, or labored?
  • What else do you notice that perhaps you haven’t noticed before?
  • As you focus on your breathing, does anything change without you having to purposely try to change it?
SEEING WALK
  • Shift your focus to what you see.
  • What are the shapes, textures, movement, and colors that you notice?
  • Can you look without naming the objects you see, even for a few seconds, but just see them as shapes, textures, movement, and colors?
  • If you are in familiar territory, are there things you notice that you’ve never seen before?
HEARING WALK
  • Shift your focus to what you hear.
  • What sounds do you hear?
  • Listen more and more deeply, what are the sounds underneath the sounds you normally hear
  • Even for a few seconds, can you hear what you hear without naming the sound?
  • What are the nuances of the sounds? Are there aspects to the sounds that you never noticed before?
SENSING WALK
  • Now shift your focus to what you sense in your body.
  • As your body moves, what do you notice? Gently scan your body as you are moving, starting with your feet and ending at your head.
  • Can you feel your muscles as they move?
  • Can you feel the touch of your clothing, air, or sun on your skin?
  • What can you notice that you’ve never noticed before?
BRINGING THEM ALL TOGETHER
  • Now see if you can bring breathing, seeing, hearing, and sensing all together as you mindfully enjoy your walk.
  • Don’t worry if you find yourself quickly shifting between these channels of awareness. Just keep practicing and see if you can, even for a few seconds, be aware of them all at the same time.  What do you notice that you haven’t noticed before?
Want some more great ideas also visit Integrated to Live Blog

Expressing a voice for the voiceless encouraging the building of better baby brains – www.betterendings.org