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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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.

5 Heart Smart Steps for Anger Management


Five Heart Smart Steps for Anger Management

Conflict happens to everyone. 

For persons with hidden differences these conflicts can be invisible until there are so many that the person explodes. One hurt builds upon another hurt and no one sees it happening. Conflict self-care is an individual responsibility, but how can we manage it before it grows out of control especially if we deal with FASD, ADHD, SID, ASD and all those other silly D’s.

Some of the things that may cause hidden conflicts others do not see or understand:

  • When I am blamed for something I didn’t do, it is easy to immediately go on the defense because I am not able to confidently dance verbally around the reality. I don’t know what words to use to protect myself so I go off to keep the person away.
  • When someone uses a big voice instead of speaking to me with kindness, I can feel the hard or aggressive tone and when I feel that tone I am triggered. It is different coming from a woman or a man. From a man it is deeper and I may be triggered quicker because I believe at that moment they are being mean and I react to protect myself. I go into defense to defend myself and I do it without thinking I simply react. With a woman when the voice is firm or bratty, it doesn’t make my heart jump so I am not on automatic snap, but I may still be rude to give myself time to think about what just happened. 
  • When plans are quickly changed it is overwhelming and frustrating because I have worked my schedule around the situation, and navigated  to get there which can be very difficult on public transportation or relying on another person. I even have to sometimes reschedule my medication times to make an appointment work, so I can be functional at that appointment. I know people without my differences don’t understand the extreme rudeness change is for me and how it affects my life.  

1. When your heart is upside down – BREATHE first!


BREATHE – Something has turned your heart upside down… frustration, confusion, bully behaviors, overwhelming situations or just life in general. Realize emotions you may consider negative like anger and pain are not always bad.  

  • BREATHE deeply into you belly until you can hold no more air think ‘I can get through this, I can handle this, I can do this.’ (One way is to count in 7 short breaths)
  • BREATHE out your feelings of hurt or anger until you have no air left in your lungs and you need to take another breath. Repeat. (One way is to blow out 8 – 1 long breath and the 7 short breaths)
  • Do this as many times as you need to… Repeat – repeat – repeat

If breathing is not working – 

2. Place your hands together and press hard


PRESS YOUR HANDS TOGETHER HARD (like praying flat hands) AND BREATHE- Continue breathing and press your hands together hard. This is when I say “_______, give me love, peace, joy and understanding.” 
  • RAISE YOUR PRESSED HANDS ABOVE YOUR HEAD AND BREATHE  –  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say “_______, give me love, peace, joy and understanding.” 
  • RAISE YOUR PRESSED HANDS ABOVE YOUR HEAD, MAKE A BIG CIRCLE OUT AND BREATHE  –  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say “_______, give me love, peace, joy and understanding” or sometimes by this time I can simply be quiet…. 
If I am still overwhelmed – 

3. Grasp your hands together and hang on for the ride!


GRASP YOUR HANDS TOGETHER (like folded praying hands) AND HOLD ON TIGHT NOW  BREATHE- Continue breathing and grasp your hands together hard. This is when I say “_______, give me love, peace, joy and understanding. Against such things there is no law.” Try to relax your hands as you breathe.

  • RAISE YOUR GRASPED HANDS ABOVE YOUR HEAD AND BREATHE  –  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say “_______, give me love, peace, joy and understanding. Against such things there is no law.” Try to relax your hands as you breathe.
  • RAISE YOUR GRASPED HANDS ABOVE YOUR HEAD, MAKE A BIG CIRCLE OUT AND BREATHE  –  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say “_______, give me love, peace, joy and understanding. Against such things there is no law.” Try to relax your hands as you breathe. Usually by this time I am ready for a walk or thinking time. 
Open your new heart – 

4. From your praying or grasped hands open your hands into a new heart – now right side up!


  • TAKE A MOMENT FOR YOURSELF – Give yourself a pat on the back for stepping through another hard place. Go for a walk, listen to music that is peaceful, look at something in nature that is beautiful to you (clouds, flowers, trees, animals). 

Take the next step – 

5. Reach out to another person and share your new wisdom.  

  • IF YOU LEARNED SOMETHING NEW from this experience of riding your anger safely through a cycle let someone you love know what happened, how you managed it, what you plan to do again and what the person can do to help you navigate this if needed. 

  Do the best that you can.

 Each one of us can reach another in kindness and love. 

Do something for another today.


Special thank you to POWER PEOPLE
Sam, Liz and David – for their counsel in the development of this program. 
Please share in fullness with our connections –  2013 Better Endings New Beginnings

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Translating the world for a person with fetal alcohol

BEING A “COGNITIVE” TRANSLATOR.

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.