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 Anna – #35 of 90 Real People. Real Lives #FASD

MEET ANNA – Anna is an enthusiastic 14 year old who loves playing Barbies and is currently saving her money for a real looking baby doll.

STORY – Anna has partial Fetal Alcohol Syndrome.

STRENGTHS – She tries hard and often does well playing with younger children. Anna loves her cat (she named him Justin Bieber!) and her dog, Ziggy. She has 5 older brothers and sisters and she has 3 nieces who look up to her and love to play with her. Anna is a blessing to all who know her!

STRUGGLES – With school and making friends.

 

WISH – Anna wishes she would find a friend.

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Meet Ben – #34 of 90 Real People. Real Lives #FASD

Hey dude – Mac loves that you are running with him today. Mac has a lot of big brothers he looks up to and loves when they come to play with him. Come on Ben – Let’s GO!

MEET BEN – 18 years old and a recent high school graduate! School was very overwhelming for Ben and he struggled for many years with emotional regulation and rages. After much repetition and practice he was able to advocate for himself and follow the plans he and his team had developed for challenging days.

MY STORY – Ben has a co-occurring immune system disorder and was eventually given medical homebound services which allowed him the support and flexibility he needed in order to graduate.

STRENGTHS – Ben loves technology and his parents turn to him on a regular basis to help with their computers, TV cable box, phones, etc…!

STRUGGLES – He struggles with anxiety and social issues but tries very hard and hopes to find a job soon that is a good fit with his skills.

WISH – Ben wishes he could get a job that is a good fit for his skills.

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Meet Emily – #32 of 90 Real People. Real Lives #FASD

MEET EMILY — Emily possesses a passion for sharing her personal story, the story of so many, a story worth being told. She travels internationally educating and advocating on behalf this 100 percent preventable pandemic.

She has served as a member for SAMHSA’s Fetal Alcohol Spectrum Disorder (FASD) Center for Excellence Expert Panel. Currently, along with two other individuals with a diagnosis along the spectrum, Emily is conducting research collecting data on the physical ailments that arise in adults with an FASD diagnosis, a lifelong, full-body diagnosis.

Emily is a founding member of the first national self-advocacy network, Self-Advocates with a Fetal Alcohol Spectrum Disorder in Action (SAFA). Though she was born addicted to alcohol and cocaine and had marijuana in her system, and though doctors told her adoptive parents she likely would never make it through school,

Emily graduated Summa Cum Laude, ranking number one of her graduating class. She earned her bachelors of Science majoring in psychology and counseling, minoring in Christian ministries. She volunteers her time at a family care center as a counselor. She has held many pageant titles, including Miss Illinois Outstanding Teen 2008, garnering the overall talent award with a classical piano piece, and has worked as a model for a QVC makeup line. Every year, she travels to Monterrey, Mexico where the children of La Isla steal her heart.

In her spare time, she enjoys playing Native American flute and has one daughter, a Yorkshire terrier named, Willow.

With faith playing the key role in her life, her main message aside from FASD is 100% preventable, is that she believes God has always had something bigger for her and for YOU despite a diagnosis and despite our weaknesses. It is in our weaknesses His strength is perfected, His glory can shine through, and we can be a beacon of light and hope for others.

If you are interested in having her speak at an upcoming event or conference, please contact her at: missilteen08@yahoo.com

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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.

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.