Friday, May 23, 2014

Once You're at School, It's War - Stroy from a parent of children with dyslexia


“Once You’re at School, It’s War”

The story of

One mom, three dyslexic boys, and a precocious reader
 

By Shannon Rossi

 
1980’s
Setting:  an elementary school library, Indiana

I am that tiny girl on the big blue rug entranced by the librarian in the corduroy jumper.  At home, I practice on my sister.  I hold a book in the fork of my hand and make the book jacket crackle with each slow flip of the page.  I break to inhale that musty smell of paper and ink. Yes.  Throughout elementary school, I read as if my life depends on it.  In a way, it does.  I identify with characters like Meg in A Wrinkle in Time and the green gabled Anne Shirley.  These awkward girls grow confident and independent by the end of the books, and I count on that happening to me.

1990’s
Setting:  the university followed by the real world

That’s me in the READ BANNED BOOKS t-shirt walking into the education building.  I decide that all I really want to do is share books with children.  I learn that the single best predictor of a child’s success as a reader is the number of books in the home.  In graduate school, I focus on the use of bibliotherapy.  I begin my career fully equipped to meet the needs of every child with my stack of good books.  I teach first and second graders.  We read and write with complete abandon except for Brandon, a curiously creative delegator of literacy tasks.  I marry my high school sweetheart who does not like to read.  We have our first baby, Sam.  I leave the classroom but continue to tutor Brandon and to lead a children’s book club.  I read aloud to baby Sam from this great new book called Harry Potter and the Sorcerer’s Stone.  Parents of my students quip, “Is he reading yet?”  I smugly note the number of books in our home.

2000-2011 
Setting:  Georgia, Kentucky, and Ohio

My husband is promoted often because of his global thinking and problem solving skills.  We move a lot.  He works long hours.  He reads the first 100 pages of Theodore Rex by Edmund Morris.

I panic often because Sam’s development seems to lag behind other toddlers despite the brightly colored magnetic letters splayed across my refrigerator and the crate of books next to his car seat.  Sam can’t decide if he is left or right handed.  He stutters, can’t cut on lines, or make recognizable marks on paper.  I grow paranoid that my friends are supplementing with some innovative early learning technique.  Their children bloom so readily.  And yet. . . Sam listens to ANY book with rapt attention.  We read inappropriately advanced chapter books right along with the picture books on our porch swing.  He is unbelievably verbal.  I begin a collection of his wit and poetry and decide to home school him until his literacy skills kick in.  Meanwhile, Brandon enrolls in a private school for children with dyslexia.  My husband rereads the first 100 pages of Theodore Rex.  We are blessed with Leo, baby number two.

Sam enters public school for first grade.  He comes home and says, “The bus is like a horse going to the battlefield.  Once you’re at school, it’s war.  Your pencil is your machine gun.”  Leo hits preschool, or preschool hits Leo.  He is identified for speech services and can’t rhyme or recognize letters or numbers.  He is an artist of highest degree.  He is happy and creative.  He has a quick wit and can build Lego kits independently.  In his preschool language assessment, the teacher asks him to identify a number.  He says, “Ten.”  She says, “No.”  He says, “Of course, it isn’t!” with a sly grin.  I feel guilty that so much of my time goes to supporting Sam.  I wonder if my free-spirited, second born son is just messing with me when I quiz him about letters and numbers.  Maybe, I think, Leo is only behind because I haven’t worked with him enough.  We do flashcards until he says, “Tears are in mine eyes.”  My husband and I work with Sam at least two hours every night to keep up with his schoolwork.  My husband rereads the first 100 pages of Theodore Rex.

We invest $3,000 and every Saturday morning in vision therapy to help Sam.  We request that the school test him.  I suspect dyslexia as I reflect on Brandon.  The school can only “red flag.”  They put up the flag, but our investment capital is depleted.  So are we.  A formal, expensive identification will have to wait.

We have baby number three.  Annabelle is thrown to the wolves in fairy tale fashion as we continue to pull our boys through school.  She takes books to bed from the earliest age.  She reads signs and fills pages with letters and then stories.  She begins to read in preschool without ever having been taught.  She reads aloud to her big brother, Leo, at night.  My husband rereads the first 100 pages of Theodore Rex and is now an expert on Roosevelt’s early years.

Sam continues to make good grades with INTENSE homework support.  He cries.  I cry.  He rages.  I rage.  He is anxious and hates school.  I am anxious and hate school every bit as much as I had previously loved it.  I read aloud the textbooks and make up pictures and stories to go with every single spelling word.  Math is a disaster.  We cram for every assessment.  Sam continues to love stories, and he learns to read.

Leo, however, hates books.  He cannot read and scores in the bottom percentiles on standardized assessments.  The teachers are not worried.  He’s a boy.  It’s developmental.  His grades are good.  Leo grows sullen and angry at home.  He cries at bedtime and before school.  Like Sam, he makes comments about being dumb.  I am utterly at a loss.  How on earth can I have two children with different disabilities?  How can my boys seems so bright and struggle so much?

We continue to maintain impossibly high standards for our boys.  My husband says they have to learn strategies.  They have to work harder than the others like he has to do.  My husband is successful even if he does work around the clock, we reason.  He is just a high stress personality, we reason.  His high blood pressure is genetic, we reason.  Our nights are a blur of drilling and remediating.  We limit extracurricular activities.  We go to the church of public school every Sunday morning.  I’m increasingly bitter.  My husband does not rereadTheodore Rex.  There just isn’t time.

2012
Setting:  that place where all things converge

That’s it.  The wall.  We simply can’t do this anymore.  I am told that it will not be easy to help Leo within the public school system.  I keep running records and anecdotal records of his literacy behaviors but find no help.  I spend a summer researching online and calling various dead end leads.  A diagnostician recommends Overcoming Dyslexia by Sally Shawitz.  I buy the book that afternoon.  I weep as I read.  I find not only Leo but also Sam.  And yes, you guessed it, my global thinking, rereading, high stress husband recognizes himself.  Although there is no doubt in our minds, we decide to invest the thousands to formally identify the boys so that the school will recognize what we’ve known and compensated for year after year.

Sure enough.  The assessments prove that the boys are every bit as intelligent and every bit as dyslexic as we suspected.  The tone in our home changes.  We worry less and laugh more.  We ear read as a family with books on CD or read by Annabelle.  We invest in Christmas Kindles and become immersion readers.  We brainstorm family entrepreneurial opportunities and dyslexic-friendly career paths.  We fight through the IEP process for Leo and try to do the same for Sam.

I write a letter to Brandon’s mother expressing my deep regret that I did not know more about how to help Brandon in his first years of school.  She writes back that Brandon is struggling with college.  She worries about his future.  I worry right along with her.

2014
Setting:  the here and now

I am currently home schooling Leo in language arts using an Orton-Gillingham based program, my stack of good books, and open-ended creative activities.  I try to balance remediation and enrichment to best suit the mind of my smart, creative son.  Because of Sam’s hard work and support, his grades are strong.  Because his grades are strong, the school won’t recognize the dyslexia.  He is learning advocacy skills as he approaches individual teachers each year to meet his needs.  We are still working to prove that dyslexia affects him.  My husband is learning to work smarter instead of harder.  His wish list includes the audio version of Theodore Rex. I tutor and research and annoy others with my constant facts and quotations.

That little girl on the big blue rug is finally growing into her life’s work.  My passion for reading is finally useful (irony noted).  I am driven to understand the minds of my boys.  This discovery took 13 years or the entire childhood of my first-born son.  I’m nowhere near the end of this book, and I fight on, Narnia style.


 

Friday, May 16, 2014

My journey with Dyslexia, Dysgraphia, ADD and 3 Superpowers ~Jill Lam

Welcome to the Decoding Dyslexia Ohio (DD-OH) blog.  This blog is designed to provide encouragement and support to people with dyslexia; not only in Ohio but around the world.  The goal of this blog is to share the stories of people with dyslexia.  Some of these stories will be from famous people or people more widely known.  Some stories will be from the average person experiencing dyslexia or a parent/caregiver's point of view.  We at DD-OH want you to know that you are NOT alone!  Other resources from DD-OH are--- The website: DecodingDyslexiaOH.org  -- Facebook pages: Decoding Dyslexia Ohio and a FB page specifically focusing on family support (as requested by a number of parents)- Decoding Dyslexia OH Family Support.   Also follow us on twitter at Decoding Dyslexia Oh @DDxOH.   All these resources have a wealth of information!  If interested in sharing your story please email 4DecodingDyslexiaOhio@gmail.com to receive instructions.  Look forward to hearing from you!!

For the first blog post I will share 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 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 & even now -
I could always relate to these Ralph Phillips cartoons!  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 & 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 correctly until my own children were going through their private Orton-Gillingham tutoring. 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 now, working on my Ph.D. in Educational Psychology.  I could share some stories of heartache and pain, stories about how I never fit in and worked so 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 & empathy to help you understand!   
So how do I know I have more mirror neurons & 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 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, I was also raised by parents who also have a brain wired with 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 audio books 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 oh him in action:

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

3:  The Superpower of Tenacity
Having dyslexia, dysgraphia, and ADD 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 an 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 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 & books) I went on to get a Master's degree in Clinical Counseling and then 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 Educational Counselor in 2007- Forest Alliance Coaching (& 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 tenacity to just keep going.

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 and FB page  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 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've met a few times 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 suggested there be another Facebook page that focused Family Support (since the website & other FB page were focused on school and legal issues) so DD-OH Family Support FB 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!