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Epidemic of Labeling Part I ADD and ADHD

I’ve put off writing this post but it has been nagging at me internally for months.  I think this post must be written in order for me to move forward and past the nagging.  I never have liked nagging.  The questions and arguments I have been having with myself prior to writing this post is… what does this subject have to do with the business of coaching?    I have come to conclude it has everything to do with coaching.  This post subject will need to be written in multiple parts in order to completely share this perspective and the research I’ve done on the subject of ADD and ADHD.

Coaching is about enlightenment, discovery and forward movement.  Today my inner voice wins! The topic of labels and particularly ADD or ADHD is one that I have personal experience with.  My hope is to enlighten adults as well as adults with children who have labeled themselves or are currently taking medication for ADD or ADHD.  I pose these questions to readers of this post:

Why do we place so much trust and belief in something  like ADD and ADHD that no one can fully explain?

Why do we quickly resolve to revert to medication as a solution, based on a set of conditions that automatically label ourselves and our children?

Why do we buy into whatever our culture and more importantly the pharmaceutical companies are selling?

Why don’t we question everything before we give it a label?

Why do we assume there is only one way to resolve ADD?

Why is it that outside of the US an ADD diagnosis is relatively unheard of?

ADD and ADHD are labels that I frequently hear people use when they have trouble focusing.  It’s often used loosely like other culturally infused phrases and sometimes as an excuse to make up for a lack of attention given to people, conversations and projects. Some people use it to explain why they haven’t made progress on their life dreams.  Others have bought into the cultural term and some have agreed with the psychologists on behalf of their children and decided to medicate.

First hand experience

I have an adult son who could be labeled ADHD, who has referenced this of himself multiple times throughout his life.  He has always had a talent for art, especially in illustration and a beautiful imagination.  He currently makes a living with his art. He has never been tested and claims a lack of focus and feels hyper at times.  I have a daughter who is now almost 21 and was told she was ADD around age 15, at least  by the definition and testing used by a psychologist.  She is gifted in music and can hear sounds and tones in music that most people don’t hear.  She sings, writes songs and is a socially and environmentally engaged contributor to our world.  She is  full time college student with an internship, holds a part time job and lives independently in another state.

My younger brother was diagnosed at a young age with hyperactivity, before the term ADD and ADHD was widely used.  He was given Ridlin as a child. He would have been 50 years old if he had lived.  He’s no longer with us as he fell into alcohol abuse in his twenty’s long after he stopped taking Ridlin.  In his early 30’s he took his own life.  He was highly creative artistically, curious and gifted with the ability to do impressions of just about anyone.  He made everyone laugh.

When my youngest daughter was a child, she was interestingly different.  Curious about everything,  gifted linguistically and musically inclined.  She started talking at ten months and singing in tune by age three.  She hated tags in her clothing and I would have to remove them from everything.  She refused to eat certain foods due to their texture and her food could not touch each other.  So casserole’s were out of the question.  She needed a different utensil for each food item on her plate.  She was hyper sensitive to smells, sounds and the moods of other people.  We had some very frustrating moments especially in the morning.  One example of this was when I had to get to work on time,  I would put her shoes on and she would take them off  because the seam in her sock wasn’t perfectly aligned.  I wouldn’t see anything amiss so I would attempt to fix the problem and put her shoes on.  She would proceed to take them off again.  I found myself carrying her shoes on many mornings.

She had one speed.  Hurry up wasn’t part of her makeup.  I would have to wake her up extra early so we could be on time, waking her up early to give her the leisure to eat her breakfast slowly.  I also discovered difficulty in adapting to quick changes.  By this I mean needing to give her plenty of notice when I had to be somewhere or to run errands.  If she was busy playing,  I would have to let her know even before she could tell time that in 10 minutes we would be leaving, then five minutes, then three, then two minutes.  This seem to work better than just telling her “c’mon we have to go right now.”  The warning system that notified her that change was about to occur worked so much more effectively and she became more cooperative about switching from one activity to another.  I purchased a book called the “Difficult child” because clearly this unusual behavior must be labeled difficult.

In the first grade, during conferences with her teacher, was the first time I encountered the recommendation to have my daughter tested for ADD.  Of course I asked the teacher why she thought so.  The rather elderly teacher, ready to retire the next year, started the conversation with “Winter Birds”.  I looked puzzled by this statement and almost chuckled out loud. “We’ve been studying winter birds and your daughter, instead of paying attention was braiding the hair of the girl in the seat in front of her”.   I asked how long they had been studying winter birds?  Her teacher replied “two weeks”.  I told her teacher that perhaps my daughter had learned all that she wanted to learn about winter birds in the first week.  I came to the realization that I myself wouldn’t want to learn about winter birds day in and day out.  I didn’t think my daughters actions warranted buying into the ADD label and consequential testing, especially over the subject of winter birds.

In the third grade my daughter came home telling me that she was going to “pull her hair out”  if  the teacher said one more time “take out your math books and turn to page 21”, in the same tone of voice, in the same way every single day. My daughter would mimic the teacher’s monotone voice and all I could do was laugh.

She displayed an interest in music before she could speak full sentences, directing me to change the station on the radio until what she called “clown” music was found. I figured out quickly clown music was classical music.

Math was difficult for her but other subjects were somewhat easier.  To help her with math I found it necessary to become very creative.  We played *’mother may I math* a game we had invented.  She and her friend would compete answering the multiplication tables and when they got the answer right she or the friend could take a step forward.  We made a geometry twister game out of an old sheet and made a spinner with the geometric designs on the spinner.  It was played the same as Twister and helped her to identify the shapes easily. She responded well to this type of interactive homework assistance.

Studying was difficult for her.  When  lists of spelling words were difficult to remember we used what she was most interested in to help her remember.  We put the spelling words to music and sang them instead of reading them over and over. She received 100 percent on most of her spelling tests after this. She passed every grade with decent grades. By capitalizing on her interests… it made learning much less frustrating for both of us.

She was easily as frustrated with the dull and repetitiveness of school, pretty much from the beginning.  I frequently had to discuss with her the reasons why teachers taught the way they did. It wasn’t easy to keep her interested in learning.  I refused to have her tested for ADD and would not play into the cultural epidemic of  all children must behave and learn the same way.

Until…

In her junior year of high school, my daughter came to me and asked to be tested for ADD.  Her teachers by now had sufficiently convinced her that her focus was an issue.  She compared herself to her peers and how easily they learned and was now thinking about her future. S he didn’t want to struggle her last two years of high school.  She talked with the majority of her friends who were taking prescribed medication for ADD, and those who would buy a pill from a friend when a big test was on the horizon. These friends convinced her how much easier it was for them to focus and do well.  She came to me and we discussed it.  Against my better judgment, I made an appointment from a referral by her doctor.  She went through a battery of written tests and a conversation with the psychologist.  At the conclusion of this one hour meeting the doctor handed us his diagnosis.  You guessed it… he said she had ADD.

She was placed on medication which would need monthly approval from the doctor to obtain a refill.  She started the medication on a weekend and what I observed was amazing.  She was very focused she told me, but felt odd.  She couldn’t really describe it.  That evening she picked at her dinner and barely ate anything.  Day after day on this medication I noticed a child who was much different then the one I had raised to this point.  She had trouble sleeping and eating but boy was her focus and listening skills exceptional.

After she had lost the first 10 lbs, I contacted the doctor about the weight loss.  It had gotten to the point I had to force her to eat.  I would tell her she couldn’t go out with her friends until she finished a plate of food.  The doctor switched her ADD medicine to something different hoping this would allow her to sleep and eat.  Shortly after starting this new medication, the school office called to let me know that my daughter wasn’t feeling well.  I spoke with her on the phone and she complained of a rapid pulse or fluttering in her chest.  She went to see a heart specialist who couldn’t find anything of merit.  She had mood swings that put her in a depression some days and others that were normal.  Some might think it was associated with just being a teenager but I felt it was more pronounced now on this medication.

The doctor put her on yet another medication for ADD, and this just worsened the lack of eating and sleeping.  She claimed to feel somewhat more focused at school but I didn’t see a remarkable difference in her ability to study.  Her grades in certain subjects were always B grades.  Math was a struggle and continued to be.  The most interesting observation of all was the classes that she did well in were also ones that she was challenged in.  She got A’s in those classes and it qualified her to move into honors English class.  The difference those classes made looking back, are the ones that made her stretch more.  Around that same time she started *picking*.  Picking at her her scalp and her skin uncontrollably.

Eventually we both concluded that the medication made things worse.  It changed the light hearted fun child that I used to know into a zombie.  She had lost 15 lbs and three or four medication switches later, she decided and I agreed that she would stop taking them.  She put weight on, slept better and returned to her joyful full of life self.  Her moods seemed to be leveling out, even though there was never a chance of avoiding the typical teen drama.

During her Senior year before she graduated, I consulted with her doctor about the picking of her scalp and her skin which hadn’t subsided after stopping the medication.  The doctor referred us to a psychiatrist to determine the problem.  The doctor suspected OCD and thought it would be a good idea to find out what could be done about it.  The psychiatrist concluded that she had Trichotillomania. The solution was for her to take anti anxiety medication.  She rejected this idea.  Since she would be starting college in the fall there wouldn’t be a way to monitor the effects of this medication and part of the treatment was to be monitored.

She was accepted to a college in Chicago and we located a psychologist in Chicago to work with her on this new condition labeled Trichotillomania. Trichotillomania is in the obsessive compulsive family of disorders according to most resources on the subject. I t is described as pulling of the hair resulting in noticeable hair loss in one or more areas, including the scalp, eyelashes, eyebrows etc.  I was unable to understand how someone who never had this condition would just suddenly acquired it.

After several meetings and discussions about this issue  along with the history of being diagnosed with ADD, her new psychologist requested the results from the ADD testing done back home.  She told him how ineffective the medication had been and also shared with him the many specific things about smells, textures and sensitivity to moods of people around her she had experienced as a child.  Even though she had outgrown some of the sensitivities she maintained many of them.  The psychologist told her he didn’t think she ever had ADD but instead was HSP.  He concluded this based on her description of how she reacted to the medication.  My daughter shared these findings in a phone call to me.  When she told me I thought “great, that’s just great, yet another label!”  What I found out about HSP was astonishing. I will include the findings and detail about HSP in part two on this subject.

As I wrote this blog post some things came up for me.  One of the discoveries, is that the sudden onset of her Trichotillomania began after taking her ADD medication.  There was no sign of such a disorder before.  I called my daughter mid post to tell her my hunch.  I explained that I wondered if there was a correlation between Trichotillomania and Straterra, Concerta and Aderol the three medications she had taken for ADD.  I left this message on her voicemail and she called me back after looking up the correlation.  Most of the research she managed to find were posts from parents.  These parents noticed after their children started taking the ADD medication a phenomena of picking as well as  facial and body tics.  There were posts from parents about the sudden pulling of eyelashes, eyebrows and fingernail picking.. until they bled.

There are no coincidences.

We came to these revelations as I write this blog.

Both of us  have been puzzled for the past five years at the reasons behind this sudden onset of this condition.  Both my daughter and I feel there is a connection, even though she has stopped the medication almost four years now.  Perhaps the medication changed something chemically and has left her with this condition.  We will never know, because the producers of these products wouldn’t admit to it.  Though many of the side effects listed for these medications don’t specifically mention Trichotillomania, they do mention Tics.  Again, this condition has been a puzzle with the inability to pinpoint the exact time and reason for the onset of this condition… until the writing of this post.  While we are unhappy with the discovery that the medication has had a lasting effect, at the same time we are filled with joy at locating a source for the condition.  She can now work to clear this with alternative therapies such as energy medicine EFT( emotional freedom technique) and meditation.

Question Everything!

The point of this post is to shift your thinking … just a little.  In that labeling yourself and labeling your children creates a “buying into” of what is acceptable or the norm.  This buying into only encourages the production and philosophy of a money making machine, big pharma. When we stop buying into the definition of normal, which was created by mere mortals we call other human beings who for what ever reason, be it profit or fame have coined these labels without regard for the long term affects of their behavior pill.

In a future post on this topic I will reveal to you the original conception of what we now know as ADD.  Including astonishing research I have done on the subject.  Perhaps medicating ourselves and  our children or labeling ourselves and our children ADD  isn’t a solution but rather a band aid.  Gifted adults and children are being forced into a square hole when the original intention of their lives is to remain round.

We give our children and ourselves a behavior band aid.  I ask who is really benefiting from the behavior pill?  Our education methods and systems haven’t changed much since the days of one room school houses.  Does society and parents need to conform to these gifted souls arriving on our planet ? Or is it easier on all of us to force our children and ourselves into the same square hole?

Please read part two of this post coming soon. I will explain the label  HSP and the reason it is frequently mistaken for the label ADD.  I welcome your thoughts and encourage dialog on this subject.  Stay tuned for part two.

I don’t believe in ADD and ADHD labeling as a disability but rather an opportunity to explore new ways of looking at the special gifts of those who might not fit our typical  or cultural definition of normal.

If you or someone you know would like to explore coaching around a true disability please visit this link. http://www.christian-disability-life-coach.com

2 Responses to Epidemic of Labeling Part I ADD and ADHD

  • Kristin says:

    I was wondering if you would be interested in doing a link share with me. I can put you with a reflection from someone else about ADHD or with a disability link page. If you are interested let me know. Also let me know where you would like to be placed.

    Thanks,
    Kris

  • I very sadly read this post, holding my breath that you weren’t going to tell me of some lasting physiological affect the ADD drugs. It broke my heart to read of the skin picking. This generation is going to be known as the guinea pig generation for these drugs.

    More “focus” at the cost of your daughter’s health? Since when is knowing about winter birds required to be a successful adult?

    I thank God that you followed that nudge in you to get your daughter back!

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