Dyslexia: Behind the Scenes Isn’t Pretty

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Sometimes advocating for a child is like haggling for a car. A district rep offered my client 12 hours of Orton-Gillingham (OG).When I thought about it, I called her back and said, “You know that isn’t going to accomplish anything.”

She responded by saying, “Okay, I am actually authorized to give you 40 hours.”

I sat down totally deflated, happy about the hours, but deeply saddened that I just had to haggle (and was low-balled) for a student’s education. And no, 40 hours is not enough either.

~ Dr. Kelli Sandman-Hurley, Ed.D.

3 thoughts on “Dyslexia: Behind the Scenes Isn’t Pretty

  1. Sue Moyer

    Yes, you are correct. Dyslexia, Behind the Scenes isn’t always pretty. Our dyslexic daughters journey encompassed over 8 years of behind the scenes ugliness. After discovering LindaMood-Bell shortly after our daughter’s dyslexia diagnosis, we privately funded over 150 hours of one on one instruction. This was the best investment we ever made! Our daughter was no longer guessing at words, but actually beginning to be able to decode words, and made significant progress with early reading. We would drive three hours a day, during the summer months, for her to receive the only remediation program that worked. Although our daughter never once complained about losing her carefree summer break to tutoring, we felt that the school could provide these services during the school year. So, every year at our annual IEP meeting, we would ask for the school to provide LindaMood-Bell instruction to our daughter. The success our daughter had with LIndaMood-Bell was significant, and we felt hopeful our school would provide our daughter with a program that actually worked…why wouldn’t they? And besides, doesn’t IDEA state that the reading program offered should be a researched based program?

    Well, year after year, our request was denied. So, our daughter would continue on with the “Reading Recovery” program that the school provided. Little did we know, that the progress our daughter had made during her summers, would be undone once she was put back in to “Reading Recovery.” She continued to guess at words, and use pictures as clues to the vocabulary. Her reading levels was YEARS behind her peers.

    When we saw she had made no progress, and actually regressed, we were a little more forceful at our next IEP meting in requesting a research based reading program for our daughter. This time, we received what we thought was good news! Our daughter could FINALLY have access to a program that was highly successful….WILSON. We felt a glimmer of hope, and looked forward anxiously to the start of this great program. Several weeks into the program, our daughter was telling us that the program didn’t seem to be helping. She gave me a detailed description of how the hour was spent, and what activities and assignments they worked on. I was becoming a smarter advocate for our daughter, and had started to educate myself on the various reading programs and how they worked. She was right, the program the way it was being instructed in her class, did not follow the proper 12 step protocol that WIlson encompasses. To our horror, even though we had been told her teacher had been certified, and trained by Barbara Wilson herself, this teacher HAD NEVER EVER attended a Wilson Training Program, nor received any certification!

    Our behind the scenes ugliness continued, to the point where we could no longer allow our daughter not to receive FAPE. We decided to unilaterally place our daughter, at LindaMood-BEll, to receive intensive reading instruction, as well as instruction in math and other subject areas. We followed the legal guidelines…notified our school of our intent to unilaterally place our daughter, at her IEP meeting.

    So, we began the 3 hour drive daily…5 days a week, for 6 hours a day, of one on one LindaMood-Bell instruction. This continued for over three months. What we witnessed during this time, was nothing short of a miracle. Our daughter’s reading improved GRADE levels, and she actually read a book for pleasure….for the first time ever. Math was improving as well, and other core academic areas saw growth too! We are forever grateful for the wonderful program, and all of the exemplary instructors at LindaMood-Bell.

    Unfortunately, our school didn’t quite agree with our decision to unilaterally place our daughter. So, they were considering our daughter truant from school, even though we had properly notified them, and properly exercised our daughter’s right to such a placement under IDEA. To carry things a step farther, after a certain number of “truant” days had passed, our daughter’s school proceeded to file a criminal complaint against me. I was charged with “Contributing to the delinquency of a minor”, for my part in making my daughter “truant” from school. It was a living nightmare.

    All of this, because we as parents, wanted our daughter to read. It is pathetic that a school would continually deny a dyslexic child tools and instruction which allow for reading success! It is almost unthinkable that they would go to such extreme measures to stop parents from helping their child. However, our story does have a happy ending, and we will NEVER forget those individuals who helped our daughter along her journey. And, we will NEVER forget those who did not.

  2. V Beston

    Sorry to hear your struggle but so happy your daughter was triumphant in the end.
    Our story is similar. Our school also served us papers threatening us with a hearing with DCF. They knew full well what we were dealing with and continued to assign our son incompetent and untrained teachers. By sixth grade we stopped “playing nice” and played hard ball. We got an attorney. Our son was saved by attending a private school for kids with dyslexia. He received proper instruction!! His reading skills went from 2nd grade to 7th in 3 years. Keep fighting! It’s ugly but it must be done. Your child’s life depends on it.

    1. Sue Moyer

      V. Beston…..just saw your response to my story. Thank you so much for your support, and it couldn’t have come at a better time. I thought our saga had ended, however, we have been improperly advised by our attorney. After my charges of “contributing to the delinquency of a minor” were dropped, I was under the impression I would not have to disclose this information if I filled out a job application, volunteered for school activities etc. Unfortunately, that is not the case. I now feel like a criminal when I have to disclose that yes, I have been charged with “contributing to the delinquency of a minor.” To this day, I am still amazed at the steps the school took to retaliate against me for exercising my daughter’s right to a unilateral placement properly authorized by special education rights. But, the gains she has made have been incredible, and well worth any retribution I might face from the school district! Thanks again for your support, it means so much! Good luck with your journey, and good for you for being an advocate for your child!

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