How my disabilities are also my superpowers... Sharing my story!

It is Dyslexia Awareness month and I want to share my story...

My story:  Jill Marie-Grandstaff Lam (because I am dyslexic and ADD I don't eye-read fast so I added a lot of short video clips to help tell my story).

Dyslexia, dysgraphia, and ADD (plus anxiety and depression) are genetic and strong in my family tree.  Like many others, I didn't know what was wrong with me or the names dyslexia and dysgraphia.  I also didn't know that I had Attention Deficit Disorder, I just thought everyone lived in the thoughts in their head.  Here's an example of me in school and even now - 

I could always relate to these Ralph Phillips cartoons!  My mind wanders because it thinks in creative ways.  I tend to get lost in the stories in my own brain.  Someday, I'd love to take time to write these stories down but due to my dyslexia and dysgraphia, that process isn't easy.

I still don't know my math facts (times tables) and it wasn't because I was daydreaming during the lessons it was due to being dyslexic.  My rote memory just isn't there.  School was also challenging because I struggled with reading.  I have NEVER been able to sound out an unknown word.  I was taught Whole Language (insert eye-roll here and if you are educated about dyslexia I bet you did the eye-roll all on your own) and therefore was not taught phonics.  I didn't even learn how to say some of the letter sounds correct until my own children were going through their private Orton-Gillingham tutoring.  I will probably never be able to write a haiku poem because I have no idea how to separate words into syllables.  People who can break words into syllables always try to teach me to do this after they learn that I can't but what they don't understand is I really CAN'T.  When people do this I wonder if they would try to make a person who can't use their legs walk just because they themselves can walk. The same thing happens with learning a foreign language.  I struggle with pronouncing English words so foreign words are even worse, yet people who speak another language make an assumption that I'm just not trying hard enough.  I am trying as hard as I can! Finally, my reading fluency sucks.  I can't even get half-way through the subtitles of a movie before the screen changes. I had to see each of the Star Wars movies 12 times before I completely read the opening words- (okay, those of you who know me well know I was thrilled to see each one a dozen times).  

Yes, I struggled immensely in school from kindergarten to my Ph.D. program. Oh heck, I struggle every day with my disabilities!  I could share some stories of heartache and pain, stories about how I never fit in and worked hard to hide my disabilities; but I will not share these stories today.  I want to share with you 3 SUPERPOWERS I have BECAUSE of my disabilities. 

1:  The Superpower of Empathy

My brain is not able to process language like a non-dyslexic brain but I have more mirror neurons than my peers which means I experience deeper levels of empathy.  I knew from very early on that I felt the feelings of others.  I used to take these feelings on as my own because I didn't know the difference between the other person's feelings and my own feelings. Here's a video of mirror neurons and empathy to help you understand!   

So how do I know I have more mirror neurons and excess empathy?  I wish I could explain it or even prove it scientifically but I can't right now (working on that).  I just know.  Over the years I have developed this sixth sense so well that I am able to read even subtle body language and facial expressions of others.  When I meet people I can tell exactly what they are feeling and experiencing.  I can sense those around me that have this similar Superpower and it is often very strong in people with dyslexia.  Let me point out that not everyone has this as a Superpower or even a strength.  They may think they do because they have some mirror neurons and can show empathy but it is very different than what I am talking about; what I mean is an exceptional level of being able to feel exactly what another person is experiencing.  For those of you who have it to this degree - you know exactly what I mean. 



2:  The Superpower of Acceptance

I not only have an abundance of mirror neurons and empathy because these are the strength of my brain, but I was also raised by parents who also have a brain wired for extra mirror neurons and empathy.  My parents taught me to accept EVERYONE and to help those in need.  I was blessed with acceptance and not judgment. I was taught the love of ear-reading and given audiobooks to listen to from Zig Ziglar, Earl Nightingale, Dale Carnegie... and many more.  I was taught about Leo Buscaglia and his values.   I live my life based on the teachings of Leo even when people are mean to me or treat me bad.  Oh, you don't know Leo Buscaglia?  Well then, here's a very short clip of him in action:

Doesn't he just make you smile?  Well, that's my reaction.  I have an intrinsic passion for the inclusion of everyone.  

3:  The Superpower of Tenacity

Having dyslexia, dysgraphia, and ADD (plus anxiety and depression) is not easy and as a child, I didn't know anyone else like me so I knew that I was different.  I was on a quest to find others like me, as well as, to find the real ME.  I searched for answers in movies and books.  In high school, I found the answer in Joseph Campbell's book The Hero with a Thousand Faces and knew that I was on my own Hero's Journey!  I learned we are all on our own Hero's Journey and each movie and book took me on these adventures. The characters in these books and movies are like friends to me.  I am not an outsider looking in but immersed in the stories as if I too were living them and experiencing the same adventures. I mastered my own Superpower skill of Tenacity!  I don't give up.  Watch my friend, Samwise Gamgee, explain exactly what I mean to Frodo Baggins:

Yes, I am a person with dyslexia, dysgraphia, and ADD (plus anxiety and depression) but I am also a person with many Superpowers- Empathy, Acceptance, and Tenacity.  In elementary and junior high my life was filled with shame and exclusion.  In high school when I became "friends" with Joseph Campbell I heard my calling to help others.  Like many, I refused this calling. I thought, who was I to help others- I am not worthy.  Due to my inner tenacity, I took the leap of faith and headed off to college to pursue a degree in Psychology (I also have minors in Health Education and Marketing).  With the help of all my Supernatural Aids (the characters of my movies and books), I went on to get a Master's degree in Clinical Counseling and became a Licensed Professional Clinical Counselor with supervisory status and then entered Crossing the Threshold into the working world.  I was taught how to diagnose all types of learning disabilities, worked in many areas of special education as a therapist, and eventually, I entered the Belly of the Whale by opening my own private practice as a Psycho-educational Diagnostician and Counselor in 2007- Forest Alliance Coaching (and Forest Alliance Coaching FB page).  On my journey of helping others I have been down many Roads of Trials and I'm still on these roads but I have the tenacity to just keep going. I now have my Ph.D. in Psychology with a specialization in Educational Psychology.

As I continue my journey I have ventured into many other areas where I can help others live a better life.  A few years ago I started The Dragonfly Forest a blog where I can share insights and motivate others who are different and often have disabilities (ADHD, Dyslexia, Dysgraphia, Asperger's...).  Through The Dragonfly Forest blog, The Dragonfly Forest FB page, and my private practice I have become even more involved in the disability community and now have Dragonfly friends all over the world.   

In early February 2013, I read about the Decoding Dyslexia movement in New Jersey and knew I was receiving another calling (one I didn't hesitate to answer).  I contacted Deborah Lynam from DD-New Jersey and got started on Decoding Dyslexia Ohio by making a commitment to DD-NJ and then starting Decoding Dyslexia here in Ohio and created the Decoding Dyslexia Ohio Facebook page.   The DD-OH journey has been an exciting one and I know that I was guided this way so I can continue to help make the lives of others a better place.  I meet with the wonderful parents of children with dyslexia in Ohio and look forward to sharing this journey with them.  The parents have been such a great support system as well and these parents suggested there be another Facebook group that focused Family Support (since the website and other FB pages were focused on school and legal issues) so DD-OH Family Support Group page was started.  I am so excited by all the adventures we will be having on this DD-OH journey and thrilled that God, the Higher Power, or the Universe guided me in this direction. 

Here is one final video that I think really supports my life's journey and my Superpowers. Some of you will recognize a young Ben Foss (it was filmed in 2003 btw).   I love being on this journey with some great people like this - and YOU!  Thanks for sharing this journey with me! 

Direct link to Inside the Hidden World of Dyslexia and ADHD

(Image: photo of me, Dr. Jill Lam with Ben Foss both standing and smiling at the camera)

(Image: my own photo of a blue and green dragonfly and my own quote: "Be proud of who you are because you are great!")

  

My story is not ending - Project Semicolon & my tattoo

I know that tattoos are not for everyone but I have wanted one for a while & yesterday I finally got my tattoo.  I am thrilled to finally get this tattoo because it has so much meaning for me!  

I have shared openly about my disabilities in a past post- Who I Am. BTW, I am not ashamed to use the word 'disability' because to not use the word disability I would be denying the problems I experience with depression, anxiety, dyslexia, dysgraphia, & ADD.  Here's a better post on Why it is better to use the word disability instead of difference.  Society needs to stop making it shameful to use the words disability & mental illness!  

This is why my tattoo is so important to me!  I got my tattoo to own my struggles with depression & anxiety.  I also want to openly show my support for others who have these battles. Being open will hopefully reduce the shame & stigma around mental illnesses.  As a therapist people often think that we are the ones that have it all together and never experience depression & anxiety but that is not true. The professions of psychology & counseling often have some of the highest suicide rates.  I believe one of the reasons is because we are told it is not okay to disclose our own challenges.  Well, I am for full disclosure & I am open with my clients - I let them know that I have these as well & I can assure them that life is worth living when we have support & learn to accept exactly who we are.  

So, let me explain my tattoo to you!  This tattoo is my Dragonfly Forest (visit my FB page at The Dragonfly Forest & my private therapy practice FB page at Forest Alliance Coaching).  For those of you who don't know my married name is LAM and it means Forest in Chinese - these are the Chinese Characters for Lam/Forest. The Forest (woods) is also my escape & the place I go for inner salvation. The Dragonfly is the symbol of who I am & I'm proud to be a unique amazing Dragonfly!  The body of my Dragonfly is a Semicolon.  It is to represent that my story isn't over! It stems from Project Semicolon.  Project Semicolon is a nonprofit movement started by Amy Bleuel to honor her father, who took his own life.  It is to bring awareness & shame reduction to those who battle depression, suicide, addiction, anxiety, & other mental illnesses.  Here's the reason a semicolon is used - "A semicolon is used with an author could've chosen to end their sentence, but chose not to.  The author is you, and the sentence is your life." 

My goal is to continue to openly discuss the topics that people would rather keep hidden - learning disabilities & mental illnesses. We have nothing to be ashamed of because we have more battles to fight than others. We will have less battles to fight when there is no longer discrimination and negative stigmas about having a disability and/or mental illness.  

Be strong & Be proud!  

(Image description: photo of my left arm wearing a heart linked gold & silver watch & a bracelet that says "Just Keep Going" and my tattoo of a dragonfly with a semicolon body & the Chinese Character for Lam (my last name) which means Forest. On the right side of the picture is my own quote "Be a warrior! Be a survivor! Just keep going! Don't let your story end! Proud to be a Dragonfly!")

What it might be like to have dyslexia

October is Dyslexia Awareness month so this article will help you understand what it might be like to be a person with dyslexia.  I used the words “might be like” because one of the first thing to understand is that dyslexia is different for each person.   Everyone is an individual and the brain is a unique as a person’s fingerprints; no two are alike! 

Let me explain in a simple way how the brain processes language.  

This is the NON-DYSLEXIC brain working.  When the person sees the words on the page they quickly go to the language center of their brain.  In the non-dyslexic language center the information (letters, sounds, numbers, colors...) are all stored in an orderly sequential way so that each piece is easy to retrieve. Having an organized language center makes learning, especially learning to read fairly easy.

The language center of a person with dyslexia is very different.  

Here the person sees the words on the page and goes up to their language center of their brain to find the corresponding letters and sounds.  When they get to their language center, it is not organized.  Depending on how dyslexic they are, their language center can range from having only a few things out of place to major chaos.  If the person also has ADD/ADHD there may be even more difficulties.  A person with dyslexia doesn't often come back quickly with information because they are sorting through all the mess in their language center to find just the right words, letters, sounds, numbers...  This can be seen when a student has low reading fluency and/or difficulties with Rapid Automatic Naming (RAN). Since the language center is disorganized the person often struggles with sounding words out and may read the words incorrectly.  A great deal of time they will just guess a word based on beginning letters and the shape of the word because it is very time consuming searching all over their language center for just the right match.  

   

Hopefully this gives you an idea of what it might be like for a person with dyslexia.  If you look up on the internet what it is like to be a person with dyslexia you may come across some activities that "simulate" dyslexia.  I'm not a fan of these "simulations" (explained below) but what I hope you get from these is an understanding of the frustration and feelings of learned helplessness (important topic to understand) that comes from being a person with dyslexia. 

So, why am I not a fan of some of these simulations?  Well, for a few reasons.  As I pointed out before, every person with dyslexia is different and often these "simulations" give the impression that these experiences are universal and they feed into many myths.

The first one I don't like is the one where the people have to read from a paper where the letters are backward, squiggly, or missing parts.  The point is to demonstrate how hard a person with dyslexia has to work in order to read.  The problem with this simulation is the way the letters are presented.  For the most part, people with dyslexia do NOT see things differently.  It is NOT a vision problem.  True, there are some people who also have difficulty with convergence or have eye problems but this is NOT dyslexia.  A better way to present this activity is to try to read something in a foreign language that you do not understand, especially out-loud. These are real words and in order to read them you have to know the phonetic codes that go with each letter and foreign language. Try this:

The other simulation I'm not fond of is the "mirror writing."  Again, this is to show how frustrating it is for the person with dyslexia to share their thoughts on paper but it also adds to the myth that people with dyslexia have difficulty with their vision.  Also, not everyone with dyslexia also has dysgraphia.  Dysgraphia is often common in people with dyslexia but some people with dyslexia are great at writing (penmanship & written expression).  Most people don't even know about dysgraphia which is similar to dyslexia. See, in writing there are also a lot of steps the brain has to go through to process the language and tell the hand how to form the letters, space the letters, spell the words, formulate the sentence, and express thoughts.  Some people may be dysgraphic and not dyslexic - remember everyone is unique.  Doing the mirror activity can be very confusing for people.  A better way to simulate the difficulties with writing for some people with dyslexia is to have people listen to a few sentences in different foreign languages (ones they do not know) and have them write down what they are hearing.  Remember that most adults have learned to adjust to the most non-phonetic language, English so for some people this task may be fairly easy. So to add to the challenge have participants write with their non-dominant hand and go quickly so there is no time to sit around an think.  It is also good to have the sentences to be dictated by someone who fluently speaks that language.

Thanks for still reading this post.  I know it is long and I made it that way on purpose.  People with dyslexia don't like to read because it over works their brain. This is called cognitive overload.  When students are in school all day they will experience cognitive overload.  These students are working 2, 3, and sometimes even 4 times harder than their non-dyslexic peers but it is not often obvious.  So only when a non-dyslexic person (parent or teacher) understands this then changes can be made to the way the person with dyslexia is viewed and treated.  I hope you now have a better understanding of what it might be like to be a person with dyslexia.

Finally, the very best way to know what it is like for a person with dyslexia is to ASK them!  Have them explain what it is like for them in school or work.  They will have the most accurate insight into what it is like to be a person with dyslexia.    

Cartoon Saturday -Dysgraphia

Why a Dragonfly?

I am often ask – Why refer to people who are different as a Dragonfly.  So here’s why:

Dragonflies are often misunderstood, undervalued, and labeled as wrong, bad, or evil.  They have been given names such as devil’s darning needle, ear sewer, horse stinger, skeeter hawk, and the snake’s servant. 

Many people dislike Dragonflies or even fear them; mainly because they have never taken the chance to see the gifts Dragonflies provide the world.  Dragonflies are beneficial, peaceful, and stunning.   Dragonflies do not bite you or harm you in any way.  If you actually look at a Dragonfly you will see the Dragonflies reveal iridescence – the ability to show itself in different colors depending on the angle and polarization of light falling on it~~ making the Dragonfly breathtaking. 

You are a Dragonfly if you are different because you have some type of disability, disorder, or difference.   You know if you are a Dragonfly because you will feel that you just don’t “fit-in” with what main-stream finds acceptable.  Some Dragonflies are obvious because they have physical disabilities that can be seen but many Dragonflies have hidden disabilities/disorders such as ADHD/ADD, Anxiety, Asperger's, Autism, Depression, Dyscalculia, Dysgraphia, Dyslexia, Dyspraxia, Nonverbal Learning Disability, Obsessive Compulsive Disorder, Sensory Processing Disorder, and Twice Exceptional (gifted but has a disability).

Finally, the Dragonfly symbolizes change – self-realization!  So this is why The Dragonfly Forest was created – as a place where Dragonflies can come to for motivation, inspiration, education, and be accepted as a Dragonfly!   

I try to keep my blog posts short and to the point (I know many of you Dragonflies don’t like to read long posts or lose interest if a video is longer than 15 – 20 minutes).  Please stop by and visit The Dragonfly Forest often and share this with your other Dragonfly friends!  

By the way I also have a Facebook page for The Dragonfly Forest, a business FB page for Forest Alliance Coaching, and a FB page for dyslexia Decoding Dyslexia Ohio, Decoding Dyslexia OH Family Support and Decoding Dyslexia Oh Homeschool Support ~~~  Go show your Dragonfly spirit and like these Facebook pages!!! 

Why disabilities need to be included when teaching diversity

I recently went to a Diversity Conference that was hosted by my school district, where my children attend and I am on the Diversity Committee.  When planning this event, as usual, I kept pushing to make sure that Disabilities (especially learning disabilities) was on the agenda as well because we really need to embrace ALL diversity.  I have been wanting to report on this event and share with you the really great sessions I attended.  I will touch base briefly on the three sessions I attended (there was a lunch session but it was really us just chatting & eating).

Session 1: “This Exit, No Return”: Voices of parents whose children have severe disabilities and what they want the world to know.  Dr. Joy Cowdery  

This session we read from a play that depicted the voices of real parents who have children with severe disabilities.  As you can expect, I cried and I cried, oh yeah, I cried.  Good thing I have courage to be vulnerable.  Being able to put myself in the shoes of another comes easy for me.  I am also a parent of 3 kids with disabilities and a person with disabilities so I could really relate to the emotional rollercoaster the short play takes you on.  This was very powerful.  I also highly enjoyed the conversation after with other parents.  We, parents of children with disabilities, are the minority and it would have been great if parents of “typical” children (majority) attended this session- but they didn’t (unless they were an intervention teacher & that doesn’t count - it’s their job).  The minority of us need for the majority to understand what it is like to live in our shoes and see the world from our perspectives.  This is the same as a person of color wanting those in the majority race to understand what the world is like for them.  The more that is understood the less we will be judged and discriminated against.  I’m not sure if Dr. Cowdery is a parent of a child with a disability because either she didn’t disclose or I missed it somehow.  The play was the “voices” of real parents of children with disabilities and that left a lasting impression. 

Session 2: It’s Possible: How to begin Including LGBTQ themed books into the curriculum.  Dr. Dee Knoblauch

After coming off the emotional rollercoaster from the last session I was knew I would cry again in this session and of course, I did.  Dr. Knoblauch explained the importance of having books in the classrooms and libraries that have characters and/or subject matter about people who are LGBTQ – Lesbian, Gay, Bisexual, Transgender, & Questioning.  She shared with us lists of appropriate books she has already read and researched. These books are appropriate for middle and high school.  I was thrilled to get these lists.  As a counselor I suggest books for clients to ear-read or eye-read as a form of biblotherapy.  When we read books with characters and situations similar to ourselves and what we are going through, we can relate and feel connected.  By reading we can live vicariously through the characters, learn lessons, and know we are NOT alone.  Being LGBTQ is being a minority in a world where the majority is not often open and accepting. I appreciated Dr. Knoblauch sharing her own personal experiences being a lesbian, living with her partner while raising daughters together because this information gave credibility to her choices of appropriate reading material.    I’m in the processing of checking for Dr. Knoblauch to see if these books are also available in audiobook format since I ear-read SOOO much better than I can eye-read.

Session 3: Teaching African American History: Movies, Music, and Multimedia.  Dr. Hasan Kwame Jeffries

I’m a movie fanatic and, like books, they can be used in counseling to help clients work through some of their own issues.  As you know I’m a passionate inclusionist and want everyone to learning to see the world through the perspective of others!  This is the best way we, as a society can become stronger and a great way to build empathy (remember – Empathy is the antidote to bullying,bias, & bigotry).  Dr. Jeffries was outstanding as he explained how he taught African American History to students using movies and critical discussions.  As he held up the movies and started to talk about them, I cried.  Not the boo hoo crying but the tears just flowed because I know these movies, I have made my own children watch these movies when it was my pick for “Family Movie Night” in the Lam house.  I raise my children the same way I was raised – teaching empathy, acceptance, and understanding along the way.  This session was validating to me because I am raising my children the way Dr. Jefferies is teaching his classes- having them watch movies and then critically discussing them. I was also thrilled to learn of a few movies that my children have not seen and I will make sure that I get these movies soon.   

Lessons learned - the lived experience of being disabled from the person with the disability:

I really enjoy learning new things and having the opportunity to attend these sessions.  I was glad to see that there were some sessions on dyslexia (Dyslexia simulations & Dyslexia 101).  I did not attend these sessions for a couple reasons.  First, as a person with dyslexia I know firsthand what it is really like to live with this disability.  Second, I teach others about dyslexia and conduct simulations, although I do much more work at explaining how the dyslexic brain processes language, how appropriate accommodations can alleviate frustration, and able to provide examples from my own life. 

I also feel that to really educate others about what it is like to be a specific race, culture, sexual orientation, or disability the presenter should be of that race, culture, sexual orientation, or have that disability.  I always find it interesting when I hear non-disabled people speaking about what it is like to be dyslexic, dysgraphic, or ADD (all my invisible disabilities) because they really have NO idea what it is like to grow up and live with these disabilities on a daily basis.  Nevertheless, many people feel they can teach about what it is like to have these disabilities because they have a child with one, took classes, or read some research/books.  That’s kind of like me teaching a class on what it is like to be Asian because my husband is Asian and my children are half Asian.  Now, I can teach a class on Chinese New Year because that is about the traditions we do in our home to celebrate. I can teach about what it is like having biracial children or being in an interracial marriage. Are you still not convinced that a person with a disability is the best one to teach about what it is like to live with that disability?  Do you still think that it is okay for a non-dyslexic person to teach a simulation on what it is like to be dyslexic?  Well, then, let me put it this way… who would be better to teach what it like to be African American – a white person or an African American person?  

Although I can empathize what it is like to be discriminated against being LGBTQ it would be inappropriate for me to be the spokesperson for the LGBTQ experience.  Can I still support them – you bet!   Being in the majority population of sexual orientation my support, empathy, and understanding would be a wonderful way to make the world a better place for the LGBTQ (or any race/culture/disability…).  I have many friends that are LGBTQ that I love and respect but it would be an incongruous of me to teach about the lived experience of being LGBTQ.   

I often explain that I would make a TERRIBLE drug and alcohol counselor because I’ve NEVER been there.  I could counselor them as the books and research tell me to – evidence based research of proven methods to overcome being an addict, but I would be a major failure.  I would be a failure because the whole time I would be thinking – WTF, just stop drinking, doing drugs, watching porn… I would be making judgments all along that I am better because I don’t have these addictions and this makes not only an ineffective counselor but also an unethical one.  I believe that the best addictions counselor is one who has been there.  A person who has spiraled to the depths of addictions and survived so they can take others along the same journey without judgment. 

The world would be a much better place is we really celebrated ALL types of diversity and those who are diverse can teach us.  I want to know what it is like to be a person of a specific race, culture, religion, sexual orientation…. the list goes on but I want to learn this information from someone who IS that race, culture, religion………    The more understanding we have the more empathy we will acquire and the less hate and discrimination will occur but we first have to realize that the best teachers are the ones who live though the experiences.  

Here are some great picture quotes that really express the importance of teaching about disabilities from people with the disabilities.  When was the last time you learned about the history of the disability rights movement?  Did you even know there was a disability rights movement?  

Why do we ignore disabilities when we talk about diversity?  Why is it okay to ignore that disabilities don't exist?   The rights of every person with a disability - visible or invisible are being violated frequently.  This would not be tolerated if we treated a person of a color or religion these ways.  Think about it! I am so blessed to be in a school district that holds a diversity conference so we can all become better people!

Feature Friday - Sharing my story - Jill Lam

Hi Dragonfly Friends!  I would like to say thanks for following me and all my adventures.  I sometimes share some personal information but sometimes my blog is a place I can share insights into what it is like to be a person with a disability.  I am in many school districts all over the state of Ohio and so I hear comments that I find shocking, frustrating, and down right sad.  When this happens I tend to write a blog post to enlighten others to the reality of what is going on. 

Today, I wrote a different blog post for one of the other things that I volunteer my time to- Decoding Dyslexia Ohio.  I have started a new blog so people with dyslexia can share their own stories & the stories of what it is like to be a parent of a child with dyslexia.  Please feel free to email me if you are interested in sharing a story at 4DecodingDyslexiaOhio@gmail.com.  

Here's my first blog post which is all about ME!  So please check it out and share it with others so I can start posting the stories of others.  If you do not have dyslexia and want to share your story please email me (TheDragonflyForest@gmail.com) that information too because I am willing to share it here on a future Feature Friday post!  

http://decodingdyslexiaoh.blogspot.com/2014/05/my-journey-with-dyslexia-dysgraphia-add.html

Shame it needs to STOP and How to help!

Although everyone experiences shame in their lives, people with learning disabilities have to battle shame more often than their non-learning disabled peers.  When children with learning disabilities begins school they learn very quickly that adults (and peers) in their lives think less than ideal about them either via implied or direct messages.  These messages hurt and make the children feel less-than, worthless, stupid, unlovable… Eventually these messages become shame-ridden scripts replayed over and over damaging their self-esteem and leaving deep scars.  Here's a previous post regarding Brene Brown and her research on Shame.

Shame is different than guilt.  Guilt is when you feel bad because of something you did while shame is when you feel bad because you believe you ARE bad.  For example, when a student fails a test one student may feel bad that they just didn’t study hard enough (guilt) while another student feels that HE/SHE is a failure (shame).   Research has provided evidence that shame is highly correlated with addiction, depression, eating disorders, bullying, aggression, and violence.  These are also highly comorbid (common) in students with learning disabilities - this is connected to SHAME!  Here's a previous post about Depression in children what you need to know. 

Imagine if you will, a first grade student with undiagnosed dyslexia, I’ll call him Charlie.  The students in the classroom are learning to read and although the teacher is teaching the students all the same way and Charlie is putting forth great effort, he just can’t seem to grasp reading skills.  His teacher feeling her own guilt (and/or shame) because no matter what she does he just can’t seem to learn to read or his reading is inconsistent.  Charlie’s parents are experiencing anxiety thinking something is wrong and Charlie overhears his parents discussing their concerns and begins to think something is wrong with HIM. 

Charlie’s parents meet with his teacher to discuss their concerns and are either validated and made to feel they are on the right path or dismissed as over-concerned parents and minimized.  A variety of scenarios will occur here – the school may be receptive right away and assure Charlie is educated appropriately with an Orton-Gillingham method and parent anxiety is reduced so Charlie is less likely to perceive that HE is stupid or something wrong with HIM – or the other extreme and the school denies Charlie has a disability, blames parents and/or Charlie for his lack of learning, refuses to evaluate, attacks parents for wanting to “label” their child,  and therefore Charlie’s parents become more scared for Charlie, his teacher becomes more defensive (due to her own shame or guilt or because her hands are tied by the school) and Charlie now KNOWS that there is something wrong with him that he is stupid.   Most scenarios are fall somewhere in between but the point here is how easy it is for Charlie to feel shame because he is struggling with reading all because he is dyslexic and therefore needs to be taught to read via an Orton-Gillingham approach and that many teachers and parents don’t know about dyslexia so they are not able to tell Charlie that there is nothing wrong with HIM. 

Charlie may share his feelings of shame by saying things like “I’m stupid” or “I’m a failure” but he also may be displaying his shame behaviorally through depression, anger, acting silly, or even avoiding activities that make him feel bad about himself.  When Charlie shares his feelings of shame either verbally or behaviorally, he is validated, minimized, or gets into trouble- then the cycle of shame continues.  Charlie’s peers become part of this cycle as well.  Sometimes it is as obvious as name calling (block-head) but sometimes (and most often) it is relational aggression where he becomes the student that no one picks to partner with or excluded socially.  These only reinforce Charlie’s negative scripts of shame. 

Sometimes Charlie finds a strength and will focus on that strength to counter some of the feelings of shame.  Maybe Charlie is great at tennis so he excels on the tennis court – for some kids this is enough protection from shame invading their whole life.  Charlie, however, is good at some things and could possibly be great if an adult would just step in and nurture his strengths to reduce the pain of the shame.  Unfortunately, adults only view Charlie as lazy, unmotivated, not living up to his potential, annoying, stupid, or a trouble-maker so they don’t want to bother with him.  Again, more validation that Charlie is right, something is wrong with HIM-- he is not good enough! 

I could go on and on about Charlie’s life, explain how shame permeates everything he does, how hard it is for him to be successful because he doesn’t experience much success and when he does experience success he has such a negative self-script that it is difficult for him to accept the success, how teachers and the system consistently add to his bucket of shame (either intentionally or unintentionally) or how the way he deals with shame are often not productive but I won’t because I think you get the picture.

Instead I want to help you see ways we can help Charlie and other kids like Charlie.  I used dyslexia as my example but it can be replaced with any type of disability (ADHD, Dysgraphia, Asperger’s…) and the results would be the same.  I’d like to point out that the more hidden a disability the more likely that the child will have intense shame.  This is because it is not socially acceptable to call a student lazy if she is struggling to get her wheelchair to move instead, we provide her assistance --but it does seem to be acceptable for teachers to call or imply a student is lazy when they are struggling academically and/or socially. 

Ways to make change:

We must first recognize the difference between shame and guilt.  Guilt is “I feel terrible I ate too much over the holidays, I should start working out more” and shame is “I ate too much over the holidays, I’m so fat, I have no self-control, I hate myself…”  Or from the perspective of a young child who lost a game: guilt is “Darn I lost, I feel bad so I’ll have to practice and I’ll eventually win” and shame is “I lost again, I’m such a loser.”   

We need to openly talk about shame and know that everyone experiences shame.  When we hide shame we only allow it to grow more deadly.  We have lost too many people to suicide, especially kids – kids are not killing themselves because of guilt they are killing themselves because they feel shame!  When we shine light on shame and call it out into the open it can no longer hide and we can battle it head on. 

We need to stop putting a negative stigma on mental health disorders (depression, anxiety, bi-polar…) and learning disabilities (I’ll stop calling them disabilities by the way, when we can openly accept and embrace all of them and there is no shame in having any of them – in the mean time I must use the word disability so that educators understand the severity of the problem the student is struggling with)!  When we are proud to share that we are depressed, dyslexic, or ADHD and people/teachers do not make judgments but instead accept us as we are, then and only then will shame be reduced.   

We must label kids appropriately and as early as possible.  Research provides evidence that the earlier a child is diagnosed the less shame and negative effects they experience later on.  Sometimes parents are told “don’t label your child” or “why do you want to label your child.”  The thing is the child is already getting miss labeled which is filling them with shame.  The correct label will reduce this shame.  When adults are finally accurately diagnosed there is a sense of relief that they are not all the negative things they thought they were, they were just dyslexic, ADHD, or have Asperger’s.  You hear about this from the likes of Steven Spielberg, Susan Boyles, Henry Winkler, and so forth. Wouldn't it be great if we can stop the shame before it even begins? 

We need to teach empathy in schools and STOP teaching bullying prevention programs (Empathy is the antidote to bullying).  What we focus on expands and therefore by focusing on bullying and differences we are priming our students to look for bullying and differences.  When we teach empathy we instill in our students the skills needed to see the world through the eyes of others and a result is a more positive support world where people care openly and honestly about others.  A place where there is less shame because when a student hears his peer say “I’m stupid, I failed that test” and that student can tell his peer – “failing a test doesn’t make you stupid in fact, you are so good at [fill in the blank] remember we learn from our mistakes.” 

We need to celebrate all students and stop excluding those that don’t fit the ‘super-star’ mold.  Have you ever been to a graduation or award ceremony that shames those who are not in the spotlight?  This is very common – I wrote about one such event months ago Stop the Shaming but the gist is if the educators had empathy they would be able to see things from the perspective of all the students who were not showered with accolades and at least acknowledge their existence. When students with learning disabilities have to sit in these award events remember they have a negative shaming script running through their heads that tell them the reason they are not getting an award is because they are NOT good enough, they are stupid, or unworthy.  Is that really the message educators want to send – no, but it is still happening.  

I could continue but want you to digest what I have already written.  Don’t worry my Dragonfly friends, I will discuss this again. 

I want to leave you with this…  

**By the way - did anyone think of this Charlie when I discussed the "Charlie" above?  I was not referring to Charlie Brown but I hope you can see the shame that Charlie Brown experienced cause if so, you are developing or have empathy!  

Words of wisdom buttons for school meetings

It is time for the school year to really get into swing which means meetings for parents of Dragonflies!  I not only attend meetings as a parent but I also attend hundreds of meetings with parents (via my business Forest Alliance Coaching).  

Many times teachers and school staff really do care about the child being discussed.  Unfortunately, there are some people who attend these meetings that just don't get it~~  They don't understand: the disability, special ed law, how much a parent is fully informed, evidence-based programs, how all the negative experiences are damaging the child's self-esteem, why parents care so much about their child, appropriate education, and so on....

I don't know why I am shocked by what is said in these meetings cause I've heard it all (oh and someday I'll write a book on this subject).  I'm not looking forward to the school meetings for my own children this year because there will be some new staff members attending.  See, I already have an interesting reputation in my school district so I never know what to expect.  

I have made some words of wisdom buttons that can be printed and pinned to the front of your shirt or added to the top of your child's notebook (you really need to have a notebook of all your child's past reports & articles on special ed law/your child's disabilities).  

Here are a few (I'll be posting some to my Forest Alliance Coaching Facebook page every once in a while so like that FB page to check out some new ones when posted- I posted a couple there todayForest Alliance Coaching on Facebook).