Gathering the Tribe: TBI-2

ACO Conference Binder 2012 –
Blog expanded Speaker Content
Madelyn Griffith-Haynie – Part 3b

Intractable Ignorance:  forming an opinion
without knowing very much about a subject,
refusing to investigate any information
that might change one’s mind;
closed mindedness; cognitive inflexibility.

It takes a village to educate a world

To underscore an essential point, I want to reiterate what I said in the first part of this article, making a comparison between the challenges of Traumatic Brain Injury and Attention Deficit Disorder [Lessons from the TBI Community]:

Individuals who find it difficult to “drive their own brains” (in either community) are FAR from having the understanding and support they deserve — from their professional caretakers, the people who claim to love them, or the random strangers on the street who believe they have the right to voice their opinions about the what a fellow human being “should” be able to do “if they really wanted to and tried hard enough.”

Calling the Tribes Together

In the remainder of the TBI section of the Brain-based Resources Series, we’ll take a closer look at some of the well-documented cognitive, mood, and behavioral changes that accompany both traumatic brain injury and Attentional Spectrum Disorders, in service of several underlying objectives:

1. To underscore, embrace and understand what TBI-focused neuroscience has come up with that the ADD community can use to increase our own understanding and acceptance of the relationship between the workings of the brain and Executive Functioning struggles — widening our understanding of ADD affect in ourselves as well as our clients and loved-ones;

2. To invite the TBI community to look at their cognitive challenges
Through The ADD-Lens™ to see if there are any coping strategies the ADD community has come up with that can help those with brain injuries work around their challenges;

3. To share concepts and vocabulary that might help illuminate, for “vanilla” caretakers and loved ones, our [mutual] experience of the tenuous, brain-based relationship between cognition and control, neuro-connections and intentionality;

— and —

4. To bring the TBI and ADD tribes together to widen the circle of authentic support — whether our “vanilla” families, friends, associates and care-takers are ready-willing-and-able to be a part of it or NOT!

The Importance of Tribe

I wish community support were one of the first things written on a treatment plan — and by “community support” I mean, specifically, “a supportive community of like-minded souls — those with similar experiences with similar situations in common.”  

I often refer to that “like-minded souls” dynamic as “spending time with your tribe,“

In my experience, the tribal kind of community support is the single most important element in the healing toolchest.   

The tribal kind of sharing community amplifies important steps along the healing pathway in a judgment-free fashion that does not sound specious or patronizing — because everybody in the tribe innately understands how tough it can be in the trenches.

UNLESS someone understands what helps and what hurts, they will almost always try to “help” in ways that are much more likely to make things worse.

Similar experiences allow tribal members to interact in ways that will rarely seem “logical” to those who don’t understand tribal dyanmics.

Empathy trumps “tough love” every single time

Despite brain-based evidence of the lack of effectiveness of that “Keep a stiff upper lip, just dig deeper to WIN no matter what” strategy, it’s a meme that refuses to die.

I don’t know, maybe it works for some individuals in the more neurotypical tribes.  In 25 years of experience with ADD and Attentional Spectrum issues (coaching and training in both ADD and “vanilla” environments) — neurotypical or NOT, I have never worked with anyone who wasn’t damaged by it on some level.

In my experience, community support mitigated the extent of the damage.

With tribal understanding providing a framework for relatively judgment-free interactions, everyone in the tribe will find it easier (sometimes, even possible) to learn to work with, around and through whatever comes with the rest of the package that is uniquely who we are as individuals.

Without it, a life that is tough enough already becomes tougher still.

For ALL human beings, processing ability is finite

Many individuals may be able to stay on track with responsibilities and accomplish their own goals and objectives while they accommodate some of the “rules” and expectations of those whose cognitive requirements differ from their own.

HOWEVER, that accommodation becomes an ADDITIONAL task, not a helpful framework for actuation or completion.

• Stress increases as cognitive demand increases.  Executive Functioning abilities decrease as stress increases, further reducing the number of elements we are able to juggle simultaneously.

• No matter how hard they try or how hard they’re pushed, individuals already stretched to the limits of their coping abilities will not be able to accommodate additional tasks, including the additional task of effective reprioritization on the spot.

Lack of truly supportive community dynamics is the single most-important missing element I see in today’s unnecessarily competitive, get ahead, tough-love world.

It keeps us tethered to the inappropropriate expectations treadmill,
increasing stress, reducing effectiveness, and limiting potential.

Normalizing and Endorsing turn things around

Two of the most important skills for ADD Coaches, normalizing and endorsing, combine to create the essential first steps on the effectiveness pathway — supported by one of the core benefits of an effective coaching outcome: essentially, that ADD coaches serve as walking-talking permission slips.

By helping our clients identify and understand that challenges are not weaknesses,
we grant them tacit  permission to be themselves — exactly the way they are
and exactly the way they’re not! 

Understanding Challenges and Leveraging Strengths

At bottom, challenges and strengths are brain-based — and no two brains need exactly the same strategies to soar. The biggest benefit of working with what I refer to as “good” ADD Coaches — comprehensively-trained, brain-based ADD Coaches (vs. coaches without that training, vanilla OR ADD) — is their ability to help clients understand why they struggle intensely or can’t accomplish some things others do easily.

When clients understand why, they are able to stop second-guessing themselves with every new suggestion or “should,” and start focusing on what really would help.

ONLY then is a coach able to help their clients discover work-arounds for
areas of struggle and challenge.

• Good ADD Coaches normalize behaviors, functional challenges and disabilities that have been, for most of us, pathologized or demonized.

• Good ADD Coaches endorse the miracle it truly is that, despite feedback from most of the rest of our [non-supportive] communities, we wake up most days willing to try again.  Amazingly, we DO manage to make progress that is rarely noted in the world’s rush to tell us what else they need from us that we didn’t do.

We ALL crave the vision of ourselves in the mirror of acknowledgement. Good ADD Coaches (comprehensively trained, brain-based) can be counted on to provide that vision on days when the rest of the world simply doesn’t get it:

No matter how well-intended, judgmental comments that communicate that “we aren’t doing it right” heap harm, not help — only ALWAYS.

A good ADD Coach knows how many times a day we hear that we “aren’t trying hard enough” or “don’t really want to badly enough,”  or “should know better” or “be doing better by NOW,” or “are using our situation as an excuse, or “a crutch.”

A good ADD Coach understands the extent of the damage — how those comments echo in our heads, decimating resolve long after the speaker has moved along to attempt to enforce his world view on another — and how important it is to counter those comments with some positive echos.

• For some clients, his or her ADD Coach may provide the ONLY space in a client’s life safe enough to risk vulnerability and authenticity – simply by normalizing and endorsing.  But it doesn’t have to be the only place!

The normalizing and endorsing of tribal support

• We listen to each other’s stories with empathy, understanding, and true support
• We identify with each other ‘s struggles and challenges – because we’ve been there!
• We celebrate each other’s triumphs: no matter how insignificant they may seem to “outsiders,” the tribe bears witness to our miracles
• Step-by-step, in the absense of attempts to manipulate or shame, we bootstrap our way to effectiveness, healing and joy.

The following points from Dr. Harry Clarke Noyes’ Goose Story offer another way to think about the importance of tribe, articulating the principles on which I founded The Optimal Functioning Institute™ almost 20 years ago  —

People who share a common direction and
sense of community can get where they are going
more quickly and easily because they
are traveling on the thrust of one another.

If we have as much sense as a goose,
we will stay in formation with those
who are headed the same way we are.

Brain-based Symptoms in Common

As we learned in TBI Part I, neuropsychological  impairments caused by brain injury may be characterized in terms of three functional systems (also foundational in ADD Challenges)

(1) intellect, which is the information-handling aspect of behavior;
(2) emotionality, which concerns feelings and motivations;  and
(3) control, which has to do with how behavior is expressed.”
Source: Neuropsychological Assessment, 3nd  Ed., 1995,  by Muriel D. Lezak

Remember also, that according to the
Brain Wellness and BioFeedback Center of Washington, D.C.
there is substantial overlap in the symptoms that are diagnostic for both MTBI* and ADD.

“Overlap” commonly includes trouble with some or all of the following: 

• attention (directed, sustained, and ability to shift at will) 
• follow-through concentration   • distraction hypersensitivity
• short-term memory  • linking for reliable retrieval  
• decision making   • organizing   • prioritizing
• planning  • multi-tasking & time slicing
• cognitive flexibility & resilience
 — and occasionally —
• poor social skills   and   • mood swings

These observations are supported by quantitative data from brain imaging studies with children and adults diagnosed with ADD/ADHD.  Single photon emission computed tomography [SPECT] and positron emission tomography [PET] scan studies show decreased metabolism in many areas of the brain that are involved in various cognitive processes including attentional, inhibitory, and decision making behaviors.

—————————————-
*MTBI – “Mild Traumatic Brain Injury,” a term that has fallen into disfavor because there is nothing mild about it’s cognitive after-effects. Research has shown that even a “mild” case of TBI can result in long-lasting neurological issues that include slowing of cognitive processes, confusion, chronic headache, posttraumatic stress disorder and depression.

Implications: Tribal Functioning Expectations

According to information available from Brain Injury support organizations (see Related Links below), expanding on a list from the Brain Injury Association of America, in addition to physical impairments, a traumatic brain injury can ALSO result in any or all of the following problems.

ADDers (and their loved ones) will recognize these challenges all too well!

Cognitive Impairments

• Short term memory deficits
• Impaired concentration, distractability, limited attention span
• Cognitive sluggishness, struggles with intellectual clarity
• Loss of cognitive resilience  (ability to accommodate changes in plan or circumstance)
• Difficulties with cognitive orientation – understanding or following directions in in one or several arenas (i.e., written, verbal, symbolic, etc.) 
• Impairments of perception in one or several areas
  (ex., visual, verbal, emotional, cognitive, tactile, proprioceptive, etc.)
• Physical or mental disorientation (i.e., confusion in one or more circumstances, – task types, locations, areas of focus, modalities, etc.)
• Ineffective communication skills of many types (i.e., confusion in one or more circumstances, – task types, locations, areas of focus, modalities, etc.)
• Problems with planning, sequencing, prioritizing by import/consequence
• Difficulties with reading & writing in one or several ways
  (i.e., fluency, speed, comprehension, retention)
• Developmentally inappropriate judgment
• Cause and effect linking in one or several manners
  (i.e., remembering, predicting, thinking through steps, consequence to actions)
• Problems prioritizing by import

Emotional Impairments

• Mental restlessness, impatience
• Lack of motivation
• Mood swings, difficulty controlling emotions
• Anxiety
• Depression
• Low self-esteem
• Sexual dysfunction 

Physical Impairments
(bold text below indicates common areas of overlap with ADD or ADD/LD)

• Speech
• Vision
• Hearing
• Headaches
• Motor coordination
• Muscles Spasticity
• Paresis or Paralysis
• Seizure disorders  [Temporal Lobe Epilepsy/ADD misdiagnosed &/or comorbid]
• Balance
• Fatigue

Click HERE for a terrific list of TBI behavior-linked challenges from
The Betty Clooney Center

MORE TO COME

Stay tuned – I will be posting all of my speakers content from the 2012 ACO Conference – edited and augmented to take advantage of the lack of space constraints and the possibility of adding links to context, illustrations and additional information.

I am also adding more than a few resources that I did NOT have time to share at the conference
Get ’em NOW, while they’re free for the taking.

MEANWHILE: DO take some time to check out a few of the links — a TON of information I spent a great deal of time putting together for you — INFORMATION that will help you “take arms against a sea of troubles”  (as Shakespeare’s Hamlet says), in ways that allow you to “oppose them” in a fashion that will actually “end them.”

Leave me feedback (comments, likes, gold stars)
 and PLEASE help me spread the word about the series and the blog

As always, if you want notification of new articles in the Brain-based Resources series – or any new posts on this blog – give your name and email to the nice form on the top of the skinny column to the right.  (You only have to do this once, so if you’ve already asked for notification about a prior series, you’re covered for this one too)
STRICT No Spam Policy

——————————-
Attribution:  Apache Medicine Song (1908)
Frederic Remington (1861-1909)
Sid Richardson Collection – Fort Worth, Texas

graphics not otherwise attributed, are courtesy of
Wikipedia, under the Creative Commons License

More Articles in this Series
(links click ONLY once the article has posted – active links turn red on mouseover) 

• Making the Connection: Brain-based Coaching Intro
• Brain-based Overview (part 2 in the series)
• Lessons from the TBI Communiy (TBI-part 1)
• Gathering the Tribe: Characteristics & Challenges (TBI-part 2)
• TBI Specifics — Overlaps with ADD  (TBI-part 3)
• Comparing ADD Affect to Brain Part Imbalances
• Throwing down the Gauntlet: challenge to professionals
• Brain-Based References: Books on Mind and Brain
• Brain-Based Resources: Blogs & Websites
• Brain-Based References: Attentional Spectrum Books
• Booklist from the original ADD Coach Training
• Glossary of Terms from this Series
• Internet Quiz on content

Related Articles on ADDandSoMuchMore.com

• ADD seldom rides alone
• The Goose Story
• ABOUT Values and The Goose Story
• Nine ADD Challenges: What Are They? –  elements measured by
  • The Challenges Inventory™
• What ARE Executive Functions?
• Brain-based Coaching Paradigms
• Got Memory (Part I)
• ADD Overview-101 (first in a series)
• A Little ADD-Lens™ Background

From TBI Advocate brokenbrilliant.wordpress.com

• I’m not necessarily slower – I just have more to think about
• PTSD from TBI – Like being trapped in an abusive household
• Traumatic Brain Injury Linked to Post-Traumatic Stress Disorder, Study Suggests
• Understanding the Trauma in Traumatic Brain Injury

More Tribal Community articles

• I can’t do it all
• TBI and why it sucks…. (fightingptsd.wordpress.com)
• What is causing an increase in dizziness over the past year…a new revelation! (braininjuryselfrehabilitation.com)
• Denver soldier inspires others suffering from traumatic brain injuries, PTSD (kdvr.com)
• How Barbara Arrowsmith-Young rebuilt her own brain (guardian.co.uk)

Other Related Articles around the ‘net

• Dyslexic Dysgraphia and Disability (socialsecurityhome.com)
• Medical decision-making after a traumatic brain injury (pattidudek.typepad.com)
• Promising Therapeutic Target For The Treatment Of Traumatic Brain Injury (medicalnewstoday.com)
• TBI Research: Nanoscientists Developing Detection Tool (offthebase.wordpress.com)
• The Brain’s Neuronal Circuit Excitability May Be Altered By Mild Traumatic Brain Injury, Lead To Brain Network Dysfunction (medicalnewstoday.com)
• There is Help for Battered Athletes and TBI patients! (braininjuryselfrehabilitation.com)
• Traumatic brain injuries challege marriages (wjla.com)
• Diabetes drug could be a promising therapy for traumatic brain injury (medicalxpress.com)
• Existing Diabetes Medication May Ease Damage Caused By Traumatic Brain Injury (medicalnewstoday.com)
• STUDY: Injuries Suffered By Troops In Afghanistan Cause More Long Term Damage Than Anyone Imagined (businessinsider.com)

• Learning Disabilities | Information Center | Education.com (education.com)
• Traumatic Brain Injury and Sleep Disturbance CPCP (jajsamos.wordpress.com)