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

 

 

Save

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.

#frugal calm idea to destress with #FASD, #ASD, #TBI to provide #Live Abilities

Don’t forget daylight savings time and the changes it may cause for your loved one.

PuritanPride-Lavendar
Liz has made it easy for you Daylight Savings! $10 off $50 + Free Shipping!^ Code: DAYSAVE. Puritans Pride Brand. Valid 11/2/14.

A long time ago we discovered essential oils to help our daughter and in the process over the past 20 years they have become part of our almost daily emotional first aid kit. In fact, if I carry a purse, our favorite oil travels along with the neuro therapy I have in my heart and hands for Liz. Neuro is a series of special massage techniques we designed together to calm her energy. Over the years we have honed it down and tried our strategies with success for many others. Over the coming weeks we will share this with our readers. Make sure you buy the 100% pure!

It works! For boys who think this stinks – try cedar wood…

LAVENDER SALE
Save 50% – 3 for $19.47 – Only $6.49 each

Plus add the Daylight Savings Offer “DAYSAVE”!

As most families with special needs children and adults we have dedicated our lives and our finances to helping our loved ones. That means we have to find the best prices  with the best products…

Today there is a DAYLIGHT’S SAVINGS SALES “DAYSAVE” we want to share…

We love Puritan’s Pride. AND WE JUST GOT THE CODE!!!!

Daylight Savings! $10 off $50 + Free Shipping!^ Code: DAYSAVE. Puritans Pride Brand. Valid 11/2/14.

 

Let My Yes, Be Yes and My No, Be No

After almost 30 years of parenting an array of complex children who have grown into now adults I learned that Yes, my no must mean no. It has to. A ‘no-boundary’ must be clear and visible.

Working with tough kids you could spend all day using NO and sorry to say a NO used to often blows through one ear and out the other never stopping to allow a thought.

I have learned that one must use that NO frugally because it is a precious word of great power. For atypical children/adults, especially those with brain injury it sends them to the end of a cliff in a free-fall without answers. The word NO becomes a set up for defensive behaviors.

My friend and I were comparing notes and we have both come to the same conclusion – we use YES most often, whenever we can. So NO sticks when it is needed, and we can be strong enough the stand still without bending.

  • How can we do that with tough kids who look like they are defying or challenging us?
  • How do we keep control while giving them a path of acceptance?
  • How do we use YES, so we create boundaries and don’t become a doormat?

When I am asked to do something

  • I do not have time to do,
  • I don’t want to do,
  • I don’t know how to do.

I use the following statements:

If it is something I also want to do and it is a good idea, I make an appointment

  • Yes, we can go to the park tomorrow after you eat your lunch or after your nap. Then I remind them in the morning – Remember after your nap we get to go to the park.Yes, we can deliver those job applications, after you bring them back to me filled out. If you need help filling them out I am available right after dinner.

I provide abilities to accomplish the idea

If it is something I can’t do I say so.

  • I can’t do that because it is (describe behavior – cheating, lying) and I like to look at my face in the morning and say smiling “Good morning, Jodee, this will be another grand and glorious day.)

My moral standards need to stand firm.

If it is something I don’t know how to do I say so.

  • I don’t know how to do that, can you find out how to do that for me or maybe we can find out how to do that.

Together we can make this happen.

Share your ideas so that when a NO has to happen it can stick.

Toolbox Parent Radio is making a difference. Thanks Victoria for last night!

Deb Fjeld, Minnesota Parent Advocate and I, Jodee Kulp, recently completed our 8th broadcast of Toolbox Parent Radio on Global Talk Radio. When we were first selected to share our insights into the rough and tumble world of living with intense and atypical children/adults with a variety of diagnosis – we weren’t sure we could do it.

Could we get a large enough audience?
Would people be interested in interviews with us?

We are happy to announce our numbers of listeners are growing each week and we are almost booked for interviews through year end.

So I guess we are doing it!
And…we will keep on keeping on…and on….and on

Last night we chatted with Victoria Deasy who has been a special education teacher for 36 years and is Mom to a young adult with multiple issues. As she said last night,”Nothing prepared her for the real day to day world of parenting a person with fetal alcohol, FASD. She felt so alone.”
Alone is what we want to help. Deb Fjeld and Jodee Kulp, offer our voices and friends in the disABILITY world community to help provision families and professionals to support persons with neuro differences.

Listen to July 21 archive with Victoria Deasy at www.globaltalkradio.com/shows/toolboxparent (main show page) or www.globaltalkradio.com/shows/toolboxparent/program8.php (July 21-Victoria Deasy archive).