I probably should have started this series with the diagnosis. Better late than never.
How did we find out that Edmund is dyslexic?
In kindergarten, his teacher wanted him tested for speech. No issue there. He just couldn't pronounce all 6 sounds for "r" yet, including the sound in her name. His vocabulary tested at age 14. Maybe above that. They stopped testing him when he demonstrated mastery of a 14 year old's vocabulary.
When Edmund was in kindergarten, I read Tolkien's
The Hobbit to him. He loved it.
I met with his teacher about his "not meeting expectations" grades and she emphasized that he was one of the younger children in the classroom. How could this be? He has a January birthday!
Lots of children, especially boys, are held back these days. I've heard it called "the Texas Hold'em." Kindergarten expectations have soared. Children are expected to read BEFORE kindergarten. Along with increased height and strength for sports purposes, there are loads of advantages with waiting until a kid is age 6 before entering kindergarten. Wish I had done this for my boys. But hindsight is 20/20.
In first grade, he bombed the five word spelling test each week. I met with his teacher. She stressed that "boys are late bloomers." Edmund is left-handed. The teacher explained that left-handed boys are especially late bloomers. She saw no reason to have him tested for anything.
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| Disney Princesses do exist! |
Second grade, he muddled along with a kind teacher who graded him kindly. Plus, I found a lovely Disney Princess reading specialist tutor to work with Edmund on reading and spelling after school. We loved her and she loved Edmund, and she moved away a few years later.
Third grade, another kind-hearted teacher who loved him and saw nothing wrong with him. Straight As. But, third grade brought the first standardized tests.
He scored below the fifth percentile.
Gut punch.
Still, the teacher sighted boys, left-handers, late-bloomerism. She did amend his spelling tests to ten words instead of twenty. She also let us have spelling words and some test assignments early so that the tutor could help him study and pre-read the tests.
My late sister, Mary, was an educator in a Catholic school that specializes in serving learning disabled kids. No, not in my diocese unfortunately. The Archdiocese of St. Louis has a Special Ed department. They test kids for disabilities and educate learning disable students. As far as I know, it's the only Catholic diocese in the nation that serves learning disabled students.
I spoke with Mary often over these years, asking her for advice, telling her my fears. She was/is Edmund's godmother, and was so very helpful to me during this time. She was the one to suggest testing him for learning disabilities. Her exact words were
"if there is that big of a discrepancy between his grades and his test scores, that's a red flag. That signifies a learning disability."
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| This is my last picture of Mary, Christmas 2011. She passed away in July of 2012. You can read more about her here. |
Another friend agreed with Mary and had the name and number of a neuropsychologist that she had used with her own children.
I called the number, made an appointment for four months out, and waited.
That spring, after a day of testing, we learned that Edmund is smart, but learning disabled, specifically in reading. Learning disabilities in reading are many and varied. Edmund's disability specifically has to do with phonemes and phonemic awareness. All learning disabilities that have to do with reading fall under the umbrella of dyslexia.
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| Undiagnosed. |
Having a diagnosis was so freeing! I can't tell you what it meant to Edmund and me and Patrick to learn that he is not lazy (as one teacher surmised "Perhaps he just wasn't paying attention in kindergarten."), he is not stupid, he is handicapped. And there was so much we could do about it!
Sixteen weeks after the testing, we received a 16 page report from the neuropsych that included recommendations for re-learning how to read with a multi-sensory curriculum. I found a
Wilson tutor, and another wonderful relationship was formed. You can read about that tiny miracle and how my sister guides her godson from the afterlife
here.
Once we had a diagnosis, the Catholic school was willing to make some accommodations for Edmund, including reading standardized tests to him and giving him extra time for all tests.
However, in fourth grade, the day of the standardized test, I was informed that he would not be given any accommodations without an IEP (Individualized Education Plan). In the eyes of the administrator, the 16 page report from an MD was worthless without a piece of paper from the public school system.
Off to the public school we went! And they used that 16 page report, administered one or two additional tests, observed him in his classroom and corroborated everything that the neuropsychologist had concluded. What a pile of red tape and wasted time to help a child.
We did learn one interesting fact. The school psychologist who observed Edmund reported that he paid attention better than 80% of his classmates. Boom.
We muddled through fourth grade despite his teacher's confusion about learning disabilities vs. behavioral disabilities. "He seems to understand. He sits still in the classroom." And headed into fifth grade.
Despite, the diagnosis and subsequent IEP (Individualized Education Plan), our Catholic school was unable to meet Edmund's needs.
You can read about our transition to homeschooling here.
In addition to attending
St. Jude's School for Kids Who Want to Read Good and Do Other Things Good Too, Edmund still sees a
Wilson tutor for two hours a week. They are finished with the Wilson program, so together they read books, write reports, and work on spelling and grammar.
Edmund uses
Bookshare on an iPad and since the first of this year, he has completed three novels on his own (not for school) and is well into his fourth.
Bookshare is paid for by a grant from the federal government for students with a diagnosis of dyslexia. Bookshare shows the text of a book while playing the audio, and here is the wonderful thing about Bookshare: It highlights each word as it's read to him. He can also adjust font size and audio speed to his own preferences.
We were very fortunate at the time of Edmund's testing that it was covered by our health insurance. The diagnosis and IEP are valid for three years, so we will have to decide how to go about repeating the experience next year post-Obamacare.
If you think your child might have a learning disability, or if you see a huge discrepancy between grades and standardized test scores, private medical testing, or testing through your local public school district might shed some light.
Other posts I've written on these topics:
The Founding of St. Jude's School for Kids Who Want To Read Good and Do Other Things Good Too or
How Edmund Quit School
My interview with Micaela at California to Korea on How I Homeschool
Catholic, Homeschooling, and Dyslexic: Religion Class
