Brain Injured from Birth?


Never “normal” —
and never understanding
why you can’t do what others CAN

© Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC

Sort of, but not really

As awful as it is to lose functionality as a result of head injury, stroke, or some of the short-term memory deficits that cause “senior moments,” what if you had NEVER experienced the functionality you are mourning?

Those of us with Attentional Spectrum Disorders and Executive Functioning Deficits have been struggling with “TBI problems” and “senior moments” our entire lives, to undeserved and unkind public ridicule and general disbelief that what we report is a legitimate problem.

In an earlier article, Lessons from the TBI Community, developed initially for a brain-based talk to a professional conference for ADD Coaches, I attempted to compare the problems faced by individuals with challenges due to Traumatic Brain Injury to the struggles of the rest of us here in Alphabet City.

Broken Brains

I doubt that anyone who reads or watches television is unaware of the behavioral and cognitive changes that accompany dementias, strokes, and brain injuries due to accidents of one sort or another.

Most sensible individuals readily accept that those changes are a direct result of brain damage, leaving areas of the brain incapable of performing their role in the neural relay race, or doing so inefficiently or incompletely.

WHY IS IT SO DIFFICULT TO BELIEVE that that someone might be be born with parts of the brain that function inefficiently, or that brain development might not proceed in that so-called neurotypical fashion in a subset of individuals — and that there might be similar behavioral and cognitive differences as a result?

AFTER ALL, anyone who has had any reason to take a look at education in the last forty years surely must be aware of the meaning of the term “learning disorder” or “learning disability.”

If they’ve looked beyond the headlines, they may also be aware that the term does not refer to an intelligence-delimited inability to learn, but to a difference in the manner and speed in which the information must be presented for learning to take place.

Unrealistic Expectations

TBI advocates and sufferers frequently write about how painful and difficult it is for them that those around them expect that their functioning will mirror their appearance.

During the period where they look “banged up” in some fashion, loved ones and friends encourage them to be patient and take it easy. Once they look “okay,” the understanding that they are still healing seems to run out.

  • They are expected to BE okay as soon as they LOOK okay —
    to rapidly return to the “self” they were before their accident.
  • There seems to be little to no understanding that they are being asked, metaphorically, to walk on a broken leg with severed nerves.

Although the unrealistic expectations of others are maddening – and tough on the sufferer’s self-esteem – there is usually some awareness in his or her heart of the reason that they aren’t able to do what is expected of them.

They realize only too well that parts of their brain aren’t functioning “normally” yet, even though the underlying reason is “invisible” to others, so tough for them to believe.

What if they had NEVER experienced anything different? 

What if not being able to live up to expectations WAS “normal,” as far as they knew?  Then what?  How would that affect their view of themselves?

Don’t forget that you can always check out the sidebar for a reminder
of how links work on this site, they’re subtle  ==>

ADD/EFD: open for membership (no application needed!)

“Last thing I remember, I was running for the door
I had to find the passage back to the place I was before

“‘Relax,’ said the night man, ‘We are programmed to receive.
You can check-out any time you like, but you can never leave!” **

** THE EAGLES, writers: Don Henley, Glenn Lewis Frey, Don Felder
Copyright: Fingers Music, Cass County Music, Red Cloud Music

A New Reality?

When reading books written by Boomers trying to understand WHY they are suddenly struggling cognitively, my emotions are always all over the map.

There but for a role of the dice of fate, I would be in their shoes and they in mine — yet our experience of the challenges we face attending to even the simple tasks of daily living would STILL be relatively similar.

Reading the author’s descriptions of disconcerting late-life functional problems always seems like I am reading the descriptions of the difficulties and frustrations experienced by those with the diagnostic disorders in almost every single one of the “ADD-spectrum” books in my huge Executive Functioning library.

You know — that “ADD” too many people like to say
doesn’t really exist, is over-diagnosed,
over-medicated, and not that big a problem.

UNTIL it happens to them

AS I DISCLOSED in the introduction to an earlier article, Got Memory? – Part I: while I certainly empathize with the authors’ concern, it’s more than a bit of a challenge for me to sympathize with their relatively recent functional fears and struggles. (Excerpted below, but I hope you will CLICK to read the whole thing)

It’s even more difficult for me to admire their optimistic resolve, knowing that both authors were able to write from a backlog of decades of functional ease that most ADD/EFDers would trade ten years of their lives to have experienced.  I would, in any case.

OnAirIt is ESPECIALLY hard for me to join the applause of the columnists and talk-show hosts.

I am all too aware that none of them have a clue about what might have happened to the trajectory of any of their lives if the functional obstacles they were experiencing currently had been around life-long.

They don’t seem to have given a thought about how their lives might have gone if they’d never been able to count on functioning one whit better than they do on their worst days, now that they are getting older and less cognitively nimble.

  • Would they have the wherewithal to go trotting from interview to interview, financial and otherwise?
  • Would they have been able to jump through their educational hoops?
  • How about the negative impact on their relationships, their credit scores, their abilities to keep their home-fires burning, and the hit to their self confidence and self-esteem?

Forget about the Past

Let’s take a look at the climate surrounding their difficulties in the present tense.

  1. Nobody’s ridiculing their experiences or their desires for control of their relatively new symptoms. They are being applauded for their efforts.
  2. Nobody’s suggesting they wouldn’t have a problem if they just tried harder, or really WANTED to do what they say they suddenly find difficult. They are admired as if they were cognitive Paul Reveres ringing out the warning to give the public time to prepare.
  3. Nobody’s accusing them of exaggerating the difficulty of their experience, or of “drug seeking behavior” when they report that they have discovered that there are substances reported to help improve cognition.

*ALL* of which those of us with attentional spectrum disorders have had to attempt to overcome for our ENTIRE lives (and those with TBI, ABI and PTSD – who may well have been “neurotypical” to begin with – have had to attempt to overcome since the incident(s) that precipitated the problem).

More “ACQUIRED ADD” Team Members

A Science Daily article reports on relatively new research study using brain imaging technology to scan teenagers aged 17-19, attempting to determine the extent to which upbringing could affect cognition and mental health.

The study results indicate that exposure to even relatively common family problems during childhood and early adolescence affects brain development — in a manner that could lead to mental health issues and cognitive problems in later life:

[The study] found that those who experienced mild to moderate family difficulties between birth and 11 years of age had developed a smaller cerebellum, an area of the brain associated with skill learning, stress regulation and sensory-motor control.

The researchers also suggest that a smaller cerebellum may be a risk indicator of psychiatric disease later in life, as it is consistently found to be smaller in virtually all psychiatric illnesses.

Depending on the age of the child when the atypical development began, they may not recall a time when their experience of life was neurotypical – just like those of us who were BORN with attentional struggles.

IN FACT, according to the CDC (the Center for Disease Control) . . .

So guess what?

Not ONLY is the neuro-atypical community open for membership, it is larger than most people understand or believe – and growing rapidly as the Baby Boomers age.

  • We ALL crave – and deserve – understanding and support.
  • More than that, we want to be able to “drive our own brains” reliably.
  • Individuals with age-related cognitive decline and TBI after-effects are practically desperate to figure out how to return to their former levels of functioning.

Thanks to prior successes, more than a few of them have the financial resources (or family support) to hire one-on-one help, even though only a few have found the kind of help they were seeking.

Far too often, their neurological issues were misidentified as psychological issues.

Unfortunately, the comprehensive understanding of how to identify and work around neurologically-based cognitive “glitches” is still rare, even among helping professionals. The majority of them have been marinated in conflicts, blocks, resistance, self-sabotage, limiting beliefs, and various fears as the sources of most of life’s problems, and it seems that it is difficult for them to change their come-from.

  • HOWEVER, those of us who have no “what we used to be able to do” to recall have no internal understanding of the reality that we need to learn to work around many of the neurological “glitches” that result in cognitive struggles.

How could we possibly know that portions of our brains aren’t working the way they do in the majority of people?  It’s the only functioning we know.

Yet only a few of us have been successful enough to have the financial resources to hire one-on-one help, good, bad or indifferent. 

Making things tougher still, a great many of us come from families who are unwilling to help.  They are either tired of “rescuing” or misguidedly fearful that their assistance will “enable” us in some fashion.

So we are left to seek both the answers and the questions from strangers on the internet, or in books or support groups, desperately hoping that we will find the information that will help us help ourselves.

Source: utrconf.com

But information is the booby prize

Information IS the first step, however. Until you understand the nuances of your particular flavor of ADD/EFD, you’re likely to be chasing your tail.

You really do need to understand the brain in general and your brain in particular to be able to figure out what YOU need to do to move forward.

But don’t be mislead by some of the rah-rah posts around the internet.

Information alone won’t do much for you, anymore than sitting alone in your meditation room chanting to “attract” riches is likely to work very well.  You do have to get into action.

  • Unfortunately for us, knowing what to do and DOING what we know are two very different things.
  • Left to our own devices and desires, most of us with ADD/EFD wrestle mightily with activation and intentionality.

It’s always easier to move forward with support, and nowhere is that more true than with someone who is attempting to overcome functional difficulties.  We’re far more likely to get into action and follow-through to completion with an accountability champion, peer coach or body double who understands our strengths as well as our limitations.

Brain-based ADD Coaching techniques can really help

If you can afford private coaching, that’s ideal – but that is only ONE of many ways to get some wind beneath your wings. 

When money is tight, learning how to Peer Coach is an incredibly cost-effective option.

After a short time learning a few tips and tricks about enrolling a peer coach and trading services with them, and procedures to optimize your relationship, budget concerns need never be a stopper AGAIN.

If finances are r-e-a-l-l-y tight right now, leaving even a small investment into enrollment into Peer Coaching Basic Training out of reach, life-changing information is available for free, right here on ADDandSoMuchMORE.com — with new information added all the time.

Most of the content on ADDandSoMuchMore.com, directly from this particular horse’s mouth, is what my clients learn while they are coaching with me.  The only difference, when your only option is to read the information here, is that the information is not tailored for you specifically or delivered on an as-needed basis as we work on overcoming particular glitches in your individual life.

Even if you’re flat broke, all you need to take advantage of this self-help pro-bono coaching format is access to a library to get on the internet and your own willingness to do the work (tougher than it sounds, I know, but better than putting up with lousy functioning for the rest of your life, right?).

Most cities have support groups, generally free, where you will be able to meet another who also wants more from life. Agree to become accountability and resource partners.

Spend time together discussing the ideas you find here, on other sites, in books and podcasts, and so forth. Agree to be phone support and check-in partners.  Accountability really helps.

Interact with ME in the comments section – far too few of you take advantage of that structure.

Group Coaching

Let me know in the comments if you would be a candidate for a low-fee group coaching format, over a private telephone bridge.  I will form groups for as few as ten people, as long as all ten are committed to attend.

I need six expressions of interest before I will invest my time putting a group coaching seminar together and marketing it to others to make sure it is full enough to work — and if you and five friends want to hire me to coach your own private group, we can work that out too.

Private Coaching

If you do decide that private coaching is the best option for you, make sure your coach is comprehensively trained in brain-based technique and is ADD/EFD-literate.

Just as NOT ALL life coaches have the training to work with ADD/EFD, only comprehensively trained, brain-based ADD Coaches have sufficient training to be able to help you understand the link between your own particular Challenges and your neurology.

Until you understand the particular “flavor” of your personal brain-based obstacles, you have little hope of figuring out how to work around them, much less learning how to strengthen the areas that need help – so you continue to limp along with tips and tricks.

Needlessly!

Get in touch when you are tired enough of the struggle that you are ready to DO something about it.  If I can’t help you — in one format or another, regardless of your financial situation — I’ll do my best to connect you to someone who can.

Meanwhile, keep your eyes peeled for some brand new skills TeleClass offerings.  There’s a good chance they will fill fast, so be sure to put your name in the hat EARLY!

No matter what the source of your cognitive and functional struggles,
or how long you have been struggling
– life really CAN be easier and more rewarding –
and you really CAN accomplish more
than you currently believe is possible for you.

It doesn’t HAVE to be so hard!

 

© 2015, all rights reserved
Check bottom of Home/New for the “sharing rules”

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IN ANY CASE, do stay tuned.
There’s a lot to know, a lot here already, and a lot more to come – in this Series and in others.
Get it here while it’s still free for the taking.

Want to work directly with me? If you’d like some coaching help with anything that came up while you were reading this Series (one-on-one couples or group), click HERE for Brain-based Coaching with mgh, with a contact form at its end (or click the E-me link on the menubar at the top of every page). Fill out the form, submit, and an email SOS is on its way to me; we’ll schedule a call to talk about what you need. I’ll get back to you ASAP (accent on the “P”ossible!)
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You might also be interested in some of the following articles
available right now – on this site and elsewhere.

For links in context: run your cursor over the article above and the dark grey links will turn dark red;
(subtle, so they don’t pull focus while you read, but you can find them to click when you’re ready for them)
— and check out the links to other Related Content in each of the articles themselves —

Related articles right here on ADDandSoMuchMore.com
(in case you missed them above or below)

 

Other supports for this article – on ADDandSoMuchMore.com

A Few LinkLists by Category (to articles here on ADDandSoMuchMore.com)

 Related ‘Round 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!"

6 Responses to Brain Injured from Birth?

  1. MindBody says:

    Hi Madelyn, the ADHD can contribute to poor self care- but that is often largely due to the exhaustion caused by dealing with the ADHD.

    ADHD is inherently and inescapably associated with “sympathetic dominance”- ie an autonomic nervous system that is virtually continually in “fight and flight”.

    The truth is that it is this state that drives many of the poor choices that cause illness- such as inappropriate food choices and addictive behaviours of all kinds.

    Now there is a real catch here: stimulants are sympathomimetic- and in the wrong circumstances they may wind up the stress response even higher. This can be seen in things like elevated heart rate.

    This does not happen for all people– when I take dexamphetamine my heart rate usually drops
    (trust me- I’m a doctor and I measure this as my blood pressure has been high end).

    However, the stimulants do not address the underlying physiological problems that drive much of the stress and fatigue in ADHD.

    Again I will reference my own experience– I have had many occasions when dexamphetamine has helped me to settle to work and focus when otherwise I would not have, but I have finished my work day and been too exhausted to function. No hope of cooking dinner.

    – and you can trust me– I have tried additional doses (knowing that I will have to pay for that with a lower dose later so I don’t exceed my monthly prescription) to push past the fatigue and finish the day- but there has been nothing left to give.

    It is my own observation that there are real neurological problems ( with real, identifiable physical signs) behind ADHD, and the effect of them is partially ameliorated by stimulants, however I am very concerned that the debate about ADHD has become driven by an over focus on medication.

    Like

    • How wonderful to hear from you again – and I’m so sorry about the time it has taken me to respond. I saw it late, too tired to respond at the moment, then forgot about it for a while longer and just found it again. Forgive me – your comments always make me my mind travel paths they wouldn’t otherwise, which I always appreciate.

      I agree with you that the debate is (once again – grrrrr!) overly focused on medication – and not JUST stims. There is far too little discussion about how to manage with short-term memory deficits, kludgy recall on demand (despite relatively “normal” recognition), the exhaustion of having to expend twice the effort for half the results, comorbid and co-existing disorders that are frequently dx’d as the primary problem by doctors who know FAR too little about the disorders that walk through their doors – and on and on and on and on . . .

      I do SO much better across the board when I am medicated (generic dex spansules, in my case) that I hate to jump on the “Big Pharma only cares about money” bandwagon, grateful that they continue to make the particular petrol that keeps my brain moving forward at all. HOWEVER, “education by drug rep” simply MUST stop – and commission-based compensation strikes my mind as truly evil and a source of the problem.

      THEN there are the “ADD does not exist” authors and public “educators” — on whom I often wish a rapid slide into aging-onset cognitive deficits to AT LEAST keep them from spewing their opinions as facts, even if it doesn’t afford them a bit of empathy! (But tell us, Madelyn, what do you REALLY think, lol)

      The clock tells me that it’s now actually Monday, although it still feels like Sunday night – so I guess my FIRST Monday-Grumpy-Monday rant this week is here in the comments section, huh?

      Thanks so much for stopping by, and for commenting.
      xx,
      mgh

      Like

  2. janetkwest says:

    I am WAY behind in reading this. I had it marked for later reading because I knew I would get something out of it. I realized I was different in first grade, by second grade it was confirmed. I don’t think or read linearly as the schools would like. It’s not an error per se, just not as they wish to teach. I was put into reading lab and ‘trained’ to read line by line. Even now, I skip entire paragraphs and have to go back and reread. Funny thing is I still managed to read 54 books last year, but only the interesting ones. Thanks again for your writing and encouragement.
    Janet.

    Liked by 1 person

    • I am WAY behind in reading, approving & responding to comments lol.

      You are rare – in my experience – to have realized you were “different” (vs. “broken”). I’m really not big on “education” per se, primarily because it usually makes no sense with what neuroscience understands about the brain – and doesn’t keep up with the latest in psychology either, in my experience.

      The education classes I took in college (hoping to be able to “fall back” on teaching if all else failed ::grin::) were some of the most tedious and frustrating of all that I’ve looked into. I couldn’t even make myself GO – with a devasting effect on my GPA! Hope teacher training has changed DRAMATICALLY since I was in school.

      Luckily, one of my “chores” from an early age was reading to the younger ones – which I loved to do. Not sure if that part of my brain worked well or it was well-developed before I hit school, but I’ve always been way ahead of “grade level” in reading and writing. Either way, throughout my life I’ve been EXTREMELY grateful – especially since I struggle with so much else.

      I’m big on the phonics approach, Merzenich validated, and I am a BIGTIME Merzenich fan. “Line by line” may help with speed-reading, but until reading for comprehension is mastered (linked to audial comprehension, btw) it’s really NOT a good approach for *most* people, IMHO.

      54 books in a single year?
      Given my lousy 2014, you’ve got me beat by a mile! IMPRESSIVE. Writing helps with reading – don’t you find that’s true? The good writers I know (including you, btw) tend to be voracious readers.

      Thanks again for reading what I write and LETTING ME KNOW that you do — wind beneath my wings.
      xx,
      mgh

      Like

  3. wendy says:

    MGH COMMENT: I have changed the text below somewhat, to remove or edit identifying comments to respect your friend’s feelings & confidentiality before approving (vs. deleting the entire comment as you suggested I might want to do). Know that I read the entire comment before responding – and that her actions are entirely understandable and what I tend to hear quite a bit.
    ~~~~~~~~~~~~~~~~~~~~~~
    I have a friend with ADD/EFD and she has very little resources for help, and very little time to invest in help. She struggles to manage that time as well. She’s a teacher, a single mother with several young children, dealing with a deadbeat dad, with a long distance boy friend, and a mother with ALS who is not in the same state so she is taking a lot of long distant trips to see her…so that is taxing her financially and emotionally right now.

    I think very few people believe her new diagnosis and think it is just another thing she has come up with as an excuse for multiple “failures” in life. However, she has kept her teaching job for many years. She did come close to losing it one year, but came back and was wonderful the next year. She graduated from college, and did pretty good. I met her in college, she didn’t do poorly, no worse than most college kids, better than some. She did get married during college, an unfortunate decision (which led to others as a result).

    I’m big on finding out what is wrong and work hard on helping yourself as much as possible. I’m not sure she’s able to do that. She has a lot of medications to take, for a lot of conditions & doesn’t always take them. I worry about her. I worry that her ADD/EFD contributes to her not taking care of herself. But how is she going to even start if she doesn’t take her medication on regularly.

    I’m concerned for her life. She has diabetes, high blood pressure….etc, and misses her medication for that. She has been rushed to the hospital for her blood pressure. And still misses her medication. She is one of the working poor & not good with money – and doesn’t qualify for assistance. It’s sad.

    I’m going to send the link to this article to her and I hope that she will be able to read the whole thing (she is one of those ADDers you write about who seem to struggle with reading – staying tracked, not literacy), even though she’s great at talking on the phone. But I can’t do that any more (remember I’ve only been deaf for 3 years.)

    thanks for listening to this. I hope she will at least start to work on the things you have offered for free.

    you are AWESOME!!

    (my husband has ADD, and has done a great amount of work. He only found out a few years ago, since I got sick, and he takes his meds religiously. He had a great therapist who specialized in it and he responded very well. It was a different type of therapy. He also has major depressive disorder, but with medication, he does great. I joked recently and said we are poster children for mental illness, taking out meds and taking care of ourselves Knowing the whole person has to be treated to be “whole”, not just taking a pill and thinking we will be just fine.)

    xoxo
    w

    Like

    • Wendy, as usual, you got the essence of this post:

      Step ONE: Explaining WHY those of us with long-term difficulties seem to have less successful outcomes than the outcomes of those who have not had to overcome obstacles over and over again.

      Step TWO: Kindling the hope that life can be better with a bit of information, sherlocking for self-awareness, and ACTION. (Because nobody sane continues to play a game they believe is impossible to ever win!)

      It breaks my heart – but doesn’t surprise me – that those around her think her ADD/EFD dx is an excuse for her lack of success — not that she NEEDS an excuse, with all she has to deal with!

      She is so lucky to have YOU as a friend who is concerned but not judgmental. It is important for you to remember that there is only so much YOU can do, and you simply must put yourself and your own health and life first (like that oxygen mask the airlines remind us about).

      You are so right when you say that setting systems to make SURE you take your medication exactly as prescribed is KEY — and it DOES take a system.

      If I don’t take the time to parse my own meds into separate, weekly M-T-W (etc) medication containers, I miss doses myself! Whenever that happens, I tend not to notice until things start falling apart. Sheesh – there goes my plan for the day!

      I’ve also discovered that parsing week-by-week doesn’t work for me. I have to make keeping myself medicated for an entire month part of the task of “picking up my meds” – having to do it every week seems like “too much to do right now” and I tend to delay attending to that little detail.

      If I had to administer insulin daily, I would put a raisin or small nut into the same container — that I never popped into my mouth until AFTER I handled my diabetes medication. Wonder if I took my meds? Check today’s box. If something’s still there when it should be gone, I didn’t!

      Others use lists, charts, calendars (etc) – different things work with different processing styles. But life will NEVER work very well if you add to your struggles by the self-created crises that could be avoided by taking your meds!

      If your friend does nothing else, staying medicated needs to be her #1 priority (especially for her diabetes & blood pressure – since fluctuating blood sugar *really* causes problems cognitively, making taking care of oneself tougher still). Only once her brain and body are in better balance will she be ABLE to work on building a new experience of living for herself and her children.

      Congrats to you and your amazing hubby for the way you are paying attention to supporting yourselves and each other through multiple challenges. YOU are awesome!

      Onward and upward!
      xx,
      mgh

      Like

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