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)
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——————————-
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) 

Related Articles on ADDandSoMuchMore.com

From TBI Advocate brokenbrilliant.wordpress.com

More Tribal Community articles

Other Related Articles around the ‘net

About Madelyn Griffith-Haynie, MCC, SCAC
Award-winning ADD Coach Training Field founder; ADD Coaching field co-founder; [life] Coaching pioneer -- Neurodiversity Advocate, Coach, Mentor & Poster Girl -- Multi-Certified -- 25 years working with EFD [Executive Functioning disorders] and struggles in hundreds of people from all walks of life. I developed and delivered the world's first ADD-specific coach training curriculum: multi-year, brain-based, and ICF Certification tracked. In addition to my expertise in ADD/EF Systems Development Coaching, I am known for training and mentoring globally well-informed ADD Coach LEADERS with the vision to innovate, many of the most visible, knowledgeable and successful ADD Coaches in the field today (several of whom now deliver highly visible ADD coach trainings themselves). For almost a decade, I personally sponsored and facilitated seven monthly, virtual and global, no-charge support and information groups The ADD Hours™ - including The ADD Expert Speakers Series, hosting well-known ADD Professionals who were generous with their information and expertise, joining me in my belief that "It takes a village to educate a world." I am committed to being a thorn in the side of ADD-ignorance in service of changing the way neurodiversity is thought about and treated - seeing "a world that works for everyone" in my lifetime. Get in touch when you're ready to have a life that works BECAUSE of who you are, building on strengths to step off that frustrating treadmill "when 'wanting to' just doesn't get it DONE!"

18 Responses to Gathering the Tribe: TBI-2

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  5. Madelyn,
    I am so happy to belong to this tribe and for the links you made available here, and thankful for the conversations opening up between the EFD and TBI communities – yay, more homies!
    I have so many questions and comments on these wonderful posts I don’t know where to begin, one thought that keeps surfacing is the possibility of gaining better understanding of how the pre-TBI (more neurotypical?) brain works/worked compared to the recovering brain. In my quest for understanding my own mind/brain, and those of others I care about, I am often asking my very patient family and friends, the ones who a least claim to be more neurotypical, what and how they think, process, conclude . . . . what is it like to have your particular brain!!! As you can imagine these exchanges are very limited (especially on their end!)
    I am still discovering “difficulties” that I didn’t even realize were difficulties because . . . well, because I don’t know what to think! =) The possibilities for each tribe helping the other is very encouraging and exciting!
    So I am going to see what fascinating information is available from our friends in the TBI community, any suggestions as to where I should start?
    Oh, I just realized that I didn’t get to some of the links you have already suggested – so I will start there.
    As soon as I make a few attempts to shorten my to-do list (or lengthen my ta-da list, whichever works). I am trying to do things as mediocre-ly as possible =)
    Annie

    Like

    • You raise an excellent point, Annie – if we don’t know what’s “normal” how do we know what we’re shooting for? The vanillas can’t tell us, any more than fish can say much about water – it’s all they’ve ever known.

      Sit tight, if you can (see answer to former post on what you can do NOW).

      I am preparing a teleclass on exactly what you ask, but there are some “in order to-s” to handle first with web-tech (so I don’t work myself to death handling enrollment manually), and I need to e-book the class materials.

      Thanks ALWAYS for taking the time to comment. (How very “normal” of you ::grin::)

      xx,
      mgh

      Like

      • annieller says:

        Oh yes, I am extraordinarily normal! =)

        Like

  6. annieller says:

    Madelyn,
    I just love being a member of this tribe, and seeing the connection you are forging with the TBI community – yay, more homies! Thank you for the links, I have been reading the blog posts mentioned in your brain based articles, and they are wonderful. There are too many great things to comment on for me at this time but one thought keeps coming back to me – I want to know what it’s like to drive a pre-TBI brain! I have been asking my patient friends, who at least claim to be neurotypical, to try to communicate how their brains work – but the communication is very limited (especially on their end, haha). So the idea that those with TBI could tell me what it’s like, and to offer comparisons on driving both is very exciting! It would help me so much in my own understanding and in the connections between all the tribes that I have the privilege to be associated with . . . so hook me up, where do I go from here?
    Annie

    Like

    • Hey Annie – I’m JUST getting back on the horse after my week off following Kate’s memorial craziness, so I’m covered up with catch-up (it went beautifully, btw, but Peggy and I pulled many all-nighters to handle all the last minute changes and additions.)

      In weeks and months to come, I will be posting much MORE on the ADD/TBI overlap, but if you’re needing info NOW, I suggest going to Edie’s excellent TBI site – Brain Injury Self Rehabilitation, or checking out BrokenBrilliant (links in all of the TBI posts).
      xx,
      mgh

      Like

    • annieller says:

      oh dear, haha – I didn’t think this post went through last night (word press seemed to have swallowed it whole) and I was so mad/sad that I would have to compose and send another post – it takes me a long time to write things! I CHECKED here this morning and still didn’t see it . . . so I labored to replace it and lo and behold, here they both are in all their glory – rats!

      Like

      • annieller says:

        So happy to know the memorial went beautifully, and that your incredible efforts were rewarded. Thank you for the replies, it is great to hear from you – hope you continue to catch up and recover.
        with love,
        Annie

        Like

        • Tonight, Peggy and I spent our time driving to East Bomfock and back — to the Apple Store NOT near us for yet ANOTHER try at getting the correct adapter that would allow me to get RID of the teensy [wide-ish but not even a screenload long] monitor I have been working with since Kate got sick (my 17″-er stopped working and there was simply NO time, etc.).

          I just hooked up this lovely B-I-G one that Kate had been using (left to me in her will, no less!).

          It’s been a saga getting it connected, but TONIGHT, although I’m still as behind as ever on everything else, I can finally see what I’m trying to write.

          Life is looking up!

          xx,
          mgh

          Like

      • aha! That solves a riddle for me too – I have been deleting one of each of your duplicate posts. So it seems you are submitting them twice! (and here I thought it was WordPress nonsense). I’m not sure what kind of notice you get (if any) – but know that they DO get through. Nothing shows up until I have time to approve the comment – which I don’t like to do until I have time to reply as well (and THAT depends on what fresh hell the universe has in store for me other wise – to use Talullah Bankhead’s favorite phrase).

        I sincerely applaud all the effort you have been making to comment – but in the future, trust for a teensy bit longer 😀

        xx,
        mgh
        Madelyn Griffith-Haynie

        Like

  7. Reblogged this on braininjuryselfrehabilitation and commented:
    Gathering the Tribe: TBI-2 is the only article I have read that support every person with brain dysfunction at its core. It describes what makes things worse and the most important to helping is the support of others who are non-judgmental and accepts people for who they are, not who they believe that person be! It also identifies how trying harder, doesn’t heal and make things “better”…and can actually make it worse! Please take the time for you and those you believe can help you if they have a better understanding. This is an exceptional educational tool, and you will see your own experiences on this website. Take a look and leave your comments on this site as well as addandsomuchmore.com! Thanks for educating others.

    Like

  8. Excellent idea – and so very true. Tribal connections really ARE critical, and finding a tribe who understands your situation and can offer you the support you need, is a step towards true recovery. Thanks for leading this effort.

    Like

  9. Ginger Mitchell says:

    I’m glad to see that your back! I hope all is well with you, I look forward to hearing from you soon.
    Ginger 🙂

    Like

    • Thanks for filling out an “e-me” form. We will talk soon.
      xx,
      mgh

      Like

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