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.

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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.

4 responses

  1. Find a neuropsychologist that tests. I knew my daughter had this and was told the same thing now at 15 finally finding a tester and she has dyslexia but also nonverbal learning disorder and adjustment disorder with anxiety. Also possible autism disorder I have felt as you have since she was 5

  2. Get him officially tested now! We did the same thing…..trying to go “through the system” and getting nowhere.

    Once tested–look around and ask EVERYONE you know if they have used any resources/teachers/tutoring. You will be surprised but someone you already know has a dyslexic learning and they will help you.
    You are doing a great job – just keep going.

  3. I understand you and your sons pain. We’ve been there, my daughter coming home in tears because she thought she was stupid. Walking in on her pulling out her hair because she felt so dumb. I don’t know where you live in Virginia but your principal is very ill informed. You need to do some research and find a school that uses funding for students with dyslexia. I found this website in VA you can contact or maybe you can give something closer. http://www.vbida.org Their contact info is at the bottom of their page.
    If you still need help, contact me.

  4. This story is breaking my heart! You are NOT alone! My son is also in 5th grade and he is dyslexic. It is real and MANY children have it!!!! You are not alone in feeling the school has no clue because the same things that were said to you were said to me and to many other mothers in my town in NJ. Here’s some advice: learn EVERYTHING you can about dyslexia, read books, look at websites, email anyone you think can help you and find what you think can help him and fight for it. You may hit a wall with the school system but don’t give up. And you will want to give up. Believe me you will. Being a mom to a dyslexic child has been the hardest thing I’ve ever done. Join a support group on Facebook or if your state has a Decoding Dyslexia chapter join it. There are parents like you everywhere and we are struggling as hard as you to make people believe us. Good luck!

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