Feature Friday: The personal experience of a Mom learning about her boys 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 reread Theodore 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.