I feel so lost and alone
Almost every parent I meet has gone through an experience like this:
Susan, I feel stuck, and I need some advice. My son is having a rough year in 5th grade. After reading some of the articles on your website, I am sure he has dyslexia.
He struggled so much in first grade that his teacher thought he had a Learning Disability. But the school said he was too young to test.
Over the years, he has made some improvement because he works hard, is a pleaser, and most of his teachers love him. In fact, he got straight A’s in 4th grade — with TONS of hard work.
But this year, he has had a one-two punch: a teacher who is not so great, plus he is hitting the “read-to-learn” wall.
I am getting nowhere with the school. They claim he tests “on level,” yet he got a D in Reading on his report card – which seems to alarm no one. When I went to his teacher with my suspicions of dyslexia, she said that in her 23 years of teaching, she had only known 1 kid with dyslexia.
The Principal (who has a background in Special Ed) said my son might have some decoding issues. So he set up a Child Study Team meeting. But t he team said he was too bright to need help.
I tried to tell them that my 5th grade son just now, finally, learned to tie his shoes (using his own wacky, two-loop method), he cannot name the months in order, and he cannot play a game like Apples to Apples where he has to sound out a word in isolation. So they had the reading specialist assess him. She indeed found some “decoding” issues. She sent home a first grade chunk-matching game. That’s it. I am dumbfounded.
I feel lost and alone with no way to help my son. I live in a town with TWO teaching universities, yet I cannot find anyone who tests for dyslexia, or any professional tutors who are certified in one of the good Orton-Gillingham based programs.
How do I advocate for my child in a school system that deems him too bright?
Since dyslexia affects 1 in 5 kids, I can’t be the only parent feeling so helpless – and so worried about middle school.
Not eligible for special education
Many children with dyslexia will not be eligible for special education services – not even if a parent brings in a diagnostic report.
In that case, fight hard for classroom accommodations – and get the right type of help after school.
This parent did not do that – and regrets it.
Dyslexia runs in my family tree. My father, who is 60, can still remember being in second grade and having the teacher call him up to the front of the class to read out loud. The teacher would force him to stand there and “do it until you get it right” – despite him crying in front of the entire class.
I have a degree in Elementary Education, but we never had a single solitary course – not even a single lecture – on dyslexia.
Yet when my daughter struggled in kindergarten, her teacher suggested the possibility of dyslexia because:
- On DIBELS, she was not meeting benchmarks in nonsense word reading
- She had terrible spelling and could not retain her spelling words — not even the high frequency words like “some”
- She already had 2 years of speech therapy for R’s and L’s, but was not improving
- She constantly confused left and right
- And she still could not tie her shoes
At end of first grade, I asked the school to test her for a possible learning disability. The school said they wouldn’t test her until at least 3rd grade.
So during second grade, when she was not making progress in Tier 2 of RTI, I hired a highly qualified private professional to test her. She was diagnosed with moderate-to-severe dyslexia.
But when I shared that report with the school psychologist, he stated that dyslexia does not exist, that Susan Barton’s website was not a valid resource, and we could not even get a 504 Plan because he felt our daughter did not need it. He claimed she displayed no difficulties and would prove to be a good student.
Her teachers and even the principal were at that meeting, and they went along with the psychologist’s assessment – leaving us to wonder if we really knew what we were talking about.
We were so confused that we decided to follow the school’s advice — and regret it.
Our daughter is now at the end of third grade. Despite another year of phonics instruction and more RTI, she still struggles with spelling, sounding out longer words, and cannot comprehend her science textbook when she reads it herself. (But she has no trouble comprehending it when I read it TO her.)
The school did eventually test her, but her scores were not low enough to qualify for Special Ed services. And her report card grades are not too bad. She gets low B’s or C’s.
We have shown our daughter’s diagnostic report to other dyslexia professionals and organizations, and they have all agreed that she definitely does have dyslexia.
So what do I do now?










