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

  1. Excellent blog post and well organized too. I think this will help many people both those with FASD and those who are trying to provide their external brains. Thanks.

  2. Anne….Thank you for writing this. Up to this point I had no clue about FASD and admittedly still have no clue but at least now I have a starting point from where I can start research. Thank you for sharing this.

    jeff

  3. Execellent post. Great insights. Wish we had this years ago, but will be a great resource to the DDA Agnecy providing support for our son.

  4. As Mom to two young adults with an FASD and as a friend & advocate to many who live with an FASD, I have learned these lessons by trial and error. However, I have not had the words to describe to others what I know to be true. I have been looked on as an “over protective, excuse making person”. Thank you so much for putting in to words what I could not!!! Thank you for being so self aware and for being willing to learn and grow and share. You have my utmost respect and love. Also thanx to your external brain! You are blessed to have him & he is blessed to have you.

  5. Savanna ….. I know that this post is from your heart and from your soul …. you are a BEAUTIFUL person …. and SOOOO very wonderful in the help and strength that you give to others ….. thank you !!

  6. This is an amazing blog post. It helps bring together some thoughts and observations I have made about my daughter who is 10. Thank you so much for sharing!

  7. You are so amazing trying to articulate and dialog about what I have long suspected about my two children with FAE. When my daugther came into my life she couldnt be held or touched. She was so locked into sensory overload and her body stayed rigid and arched. SHe would recoil at touch and stimulation on her skin. At a point early on she and her brother both got sick from the transition into my home, even though it was very slow and gradual. They both had vomiting and diarreah for a long period of time. I was so overloaded myself trying to keep up with laundry loads of sheets and clothing and the constant vomiting on myself. I new the overload of stimultation was going to be extreme but I needed to shower to clean off and she needed a bath. With all this in mind, I took her in the shower with me . . .at this point this was the precurssor that led me to believe in neruoplasticty but I couldnt explain in it that way. I used to call it a type of prevenative measure. . . ——–.

    When the warm water hit her little body and began pulsing on her skin. . .her whole body melted into my chest and she released into a deep fetal position of a ball and sank into the comfort of the feel of my skin, my heartbeat and she was at peace for the first time with touch and the sensation of love being transmitted to her through the tactile sense of her skin. This release would wear off after a time out of the shower and I would repeat the shower over and over when it started to go back to her former pattern of recoiling. Eventually she was able to hold onto the beauty of being held. It was a miracle. . but I knew it intuitively of a reprogramming. . and used it time and time again with other issues for her and my son.

    I first read a share of yours on facebook about wishing your significant other would stop announceing an event way in in advance as it sends you into overload. . .you are so the person that is bringing vocabulary to my family to explain their idiocyncracies. . .I have fallen in love with your ability to articulate your life. . .thank you, thank you, thank you, you are so insightful and needed in our life. . . .

    1. Our family also discovered the only place our small precious failure to thrive infant with undiagnosed fetal alcohol spectrum disorder was able to relax was in the warm water against my skin – over and over and over. And for a period of time the projectile vomiting would subside and she could keep her food down. Thank you for your beautifully written comment, Shannon.

  8. Savanna, Wonderful job in sharing and articulating your thoughts together. Well done.

    always supporting you

    Rick and Martha

  9. Savanna is my chosen daughter and I am very pleased that she has put into words how fasd affects her. Too bad we didn’t have this knowledge from the first day we brought her home. This writing explains how FASD affects her and what she needs from others to cope with this disability . Both Erla (her late mother) and I did what we thought was helping her cope, but obviously with our limited knowledge we were sometimes doing the opposite of what was needed. We attended local FASD support meetings to learn more, but her writing gives much more insight into how coping with stress is so difficult without proper knowledge of what others can do to help.

    One of the most difficult things I’ve had to remember and often forget is that she suffers from FASD. This is because she is bright, intelligent, articulate and has all the outward appearances of “normal” and yet underneath all this she must battle every day, a condition through no fault of her own.

    I am so proud of her for recognizing that by “coming out” in such a bold way, she will help so many parents, family members and professionals understand how to better support their loved one. This had to take tremendous courage! I want to thank Savanna publicly for doing what others have indicated they were unable to do! With a thankful and loving heart. Dad. (Glenn).

  10. Savanna, I am so very proud of you, your blog and your desire to provide insights and words that are helpful to so many people. The sincere comments on your blog reflect how much your insights and words have helped people understand and as well prevent or deal with meltdowns. I may be your external brain, but you have shown everyone that you have so much in your head and your heart to give to the world … your true purpose in life. Your words were so wonderful! I know that as your external brain some of the experiences together helped while some did not. Your sharing this will help so many. Everyone is different and unique, and what works for them may vary, however no doubt many of the things you cited are similar and helpful. I am so thankful for you … for everything you are doing…your selfless desire to share your experiences…and to improve your life and the lives of so many including people you have never met. Love you always….

  11. Interesting. Animal studies have shown that FASD results in hyperreactivity of the HPA axis – which regulates the physiological response to stress. Which could explain why you feel things so intensely. It’s important to remember that happy events can cause stress too – for a vivid example, think of a lion hunting a gazelle. Both the lion and the gazelle will be having a physiological stress response, even though their emotional experience is very different.

    1. Yes, even when it was something happy or good and I couldn’t imagine my son acting up he did. I used to think it was a strong emotion thing and since he was abused and the only strong emotion he had was fear and anger any strong emotion would be transmuted in his brain into fear and anger including happiness and Love.

      I no longer believe that. The outward effect is similar but the internal working are what SavAnna Pietrantonio wrote above and it more makes sense. It’s more like anxiety except turned up a notch and then some.

  12. One of the things I find difficult is remembering that even though my daughter has matured (she is now 30) and things have improved tremendously, she is still dealing with all the challenges her FASD presents, and I still need to be aware of that. There are days when I just want to walk in to a clean kitchen but then I remember that there are no elves who clean while I’m gone, and then my 16 month old granddaughter says “Hi Nan” and comes to me with open arms and I know everything is just as it should be. I have been given the gift of a loving daughter who can be quite funny and now my beautiful grandchild who I get to see transformed on a daily basis.

  13. This is a wonderful post!
    Thank you so much for this.
    Having a window into what meltdowns feel like, and how it feels before an after a meltdown, is brilliant. You have expressed this so clearly.
    I love your idea that meltdowns can be cathartic. I think we really need to hear something positive about them, usually they seem such a negative part of FASD.
    Thank you!

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