Making a Difference, One Person at a Time.


Brody's Story

Posted on May 21, 2016 at 11:00 PM Comments comments (0)

My son Brody's story is very similar to Lauren's.  As he was learning to read in the second half of his kindergarten year it was like deja vu.  He couldn't retain words page to page, guessed at words based on pictures, and could not sound out the words however he knew all of his sounds individually.  I wanted to test him immediately but it was recommended not to test until the age of 6 so we waited out the rest of school year until the end of May when he turned 6.  

In April of that school year , the school recommended to retain him but couldn't give me any specifics as to why. They said he just seemed uninterested in school.  When I asked the teacher if she thought it could be dyslexia she said she really didn't know anything about it so couldn't say. If I would have accepted their recommendation he would have repeated kindergarten for a second time and still be at the same reading level he ended at his first time through. The lack of knowledge on the sign and symptoms of dyslexia in the school is truly frustrating. I was looking to them as experts in education to provide direction and recognize what was going on. They had no clue! It was and still is extremely frustrating that teachers lack education and recognizing dyslexia.

If I hadn't already experienced having a child with dyslexia and recognized it,  I would have retained Brody for no benefit to him and would have been in the same position a year later wondering why he couldn't read.  Brody completed his testing end of  May and it resulted the same as Lauren's and he too immediately started tutoring in the Orton Gillingham based system twice a week throughout the summer and then after school.  At the time I felt a great sense of relief finally knowing what was going on with them both and  having them on a path to address it.

However, I had no idea of the continual battles I would face with the school. I thought I had done their homework for them, I provided the answer and things will be simple.  We will complete a 504 and document the accommodations each of them needed and the teacher would follow them.  I was very naive and greatly disappointed by what I have experienced. Lauren did receive a 504 upon my request due to her substantially limited abilities in learning, reading, writing, and thinking. She initially received the accommodations requested and recommended by the tutor but at the end of 2nd grade the school changed all of the accommodations to have the words "as needed" at the end of each of them.  This defeated the whole purpose of a 504 because it now allowed every teacher to give her accommodations at their discretion.  Her current 3rd grade teacher openly admits she has no training or education on dyslexia but her discretion is being held to a higher standard then the recommended accommodations provided by her tutor. I asked how the school determined if an accommodation was needed or not in which they responded they use all formative assessments including observation, classwork, homework, quizzes, and tests to make instructional decisions. To me that translated to they used her academic performance on a daily basis to decided whether an accommodation would be provided or not.

Think of how confusing and frustrating this inconsistency day to day, teacher to teacher, school year to school year feels like to Lauren, Is the teacher going to scribe for me today? She did yesterday but didn't last week. Is the teacher going to read my test to me today? Maybe?  Today I had to do all the math problems but yesterday I did only half.  Lauren has made vast improvements in her ability to read accurately however the amountof energy she expends to read is 5 times as much as the average student.Her teachers and the administration don't view the additional effort required asan ongoing need for consistent accommodations. They would prefer to makeaccommodations on a whim when they notice her taking too long to complete work or performing poorly on an assignment. They also use her grades and MAPS against her. Because she typically scores high they don't believe accommodations are necessary because they don't understand the daily impact dyslexia has.  I have actually opted her out of both the MAPS and PARCC testing the second half of this year so that data  cannot continue to be used against her.  Below is an excerpt from  ADA that states that the school cannot use academic success as a reason to deny a student a 504 however it does not provide students any protection from grades being used to discriminate against them on the accommodations are documented and provided  in the 504. "In passing the Amendments Act, the managers of the Senate bill rejected the assumption that an individual with a specific learning disability who performs well academically cannot be substantially   limited in activities such as learning, reading, writing, thinking, or speaking. Thus, grades alone are an insufficient basis upon which to determine whether a student has a disability. Moreover, they may not be the determinative factor in deciding whether a student with a disability needs special education or related aids or services. Grades are just one consideration and do not provide information on how much effort or how many outside resources are required for the student to achieve those grades. Additionally, the Committee on Education and Labor in the House of Representatives cautioned that "an individual with an impairment that substantially limits a major life activity should not be penalized when seeking protection under the ADA simply because he or she managed their own adaptive strategies or received informal or undocumented accommodations that have the effect of lessening the deleterious impacts of their disability."

Brody's story on the other hand is worse. I was told he upon our first meeting to initiate a 504 with the administration they he met the criteria to be considered for a 504 but then told me they didn't see that his dyslexia was having academic impact based on some assessments they performed so he did not qualify at this time for accommodations.  Again the school is using his academic success as the only measure in determining if he granted accommodations. It is extremely apparent that the school's administration and teachers do not understand dyslexia.  Dyslexics in many cases do score well due to theiraverage to above average intelligence but this does not discount the daily impact their disability has on them.

They did however indicate his reading level was low and wanted to enroll him in RTI knowing he was dyslexic and receiving tutoring in an Orton Gillingham based system. If the school was educated they would know that the RTI interventions would not benefit someone with dyslexia and would only confuse him.

It is a constant daily battle to watch over what the school is and isn't providing my children. I have to continually educate, ask questions and provide reminders to my kid's teachers to ensure they are being provided the accommodations they should be receiving and often I have to go back and forth several times to explain over and over why certain accommodations are needed. It is exhausting! At home I deal  tears, exhaustion and frustration from kids who are worn out but want to do that work and want to please. The school says they can't take into consideration the impact outside of school in providing accommodations!  I will never stop fighting for my kids but I think about all those kids who don't have someone to fight for them, don't have the resources to get private tutoring, and the exponential number of dyslexic kids that are in our schools struggling everyday that have no idea they have it.  They are kids that have been through RTI over and over, put in special education, told they were lazy, told to study more, ready to drop out and to give up.

            1.Require all teachers at every grade level to complete education on signs and symptoms of dyslexia

            2. Develop a standard screening process required to be administered to all 1st graders

             3. Provide any child with dyslexia tutoring/small group services in an Orton Gillingham based system

             4. Provide clear standards and protection to children with dyslexia seeking a 504 to ensure they receive accommodations they require.                        the accommodations should not be basedon academic success nor left to the discretion of each individual administrator                            teacher at  each school.  

Thank you for taking the time to read my children's story.



Lauren's Story

Posted on May 21, 2016 at 11:00 PM Comments comments (0)

When Lauren was in kindergarten and first grade I noticed as she was learning to read that she struggled to retain how to read words and sound them out. It was also very apparent that she used the pictures in books to guess words.  She is a very intelligent little girl so it was hard for us as her parents to understand why she was having such a hard time learning to read and progress.  

We met with Lauren's first grade teacher in November that year to discuss our concerns about her lack of progression and were told not to worry, reading clicks for everyone at different times. Her MAPS scores were high so the school would not address her struggles and test her for learning disabilities. In hindsight, the MAP scores were actually a big red flag.  How could she score above average on her reading MAPS scores yet when read word "the"  on one page of a book wouldn't have a clue how to read it on the next page of the same book.   It didn't make sense!  

I knew very little about dyslexia at the time but started to research it and wondered if that could be what was affecting her.  I was told that the school only tests for learning disabilities and not specifically for dyslexia that it was a medical condition.  I was then told by the her pediatrician's office that it was a learning disability and they don't test for it.  At this point I felt discourage but needed an answer. I stumbled upon a dyslexia group in Morton and attended a meeting. I sat in the meeting as they talked about sign and symptoms of dyslexia and was more convinced then ever that dyslexia could be what was causing Lauren's struggles.  After the meeting I called Melissa Garretson, the leader of the awareness group and a certified dyslexia testing specialist to schedule an appointment.  I completed an initial interview which indicated it was high probable Lauren could be dyslexic.

We scheduled Lauren to go through the series of tests required at our own expense and the results indicated she was indeed dyslexic with severity level of moderate to severe.  She immediately started one on one tutoring in the Susan Barton Orton Gillingham system with a certified consultant. An Orton Gillingham system is the only scientifically proven instruction method to work for dyslexia.  The school district did not and still does not provide an Orton Gillingham based instruction method so Lauren must attend tutoring after school twice a week at our own expense. Tutoring is a very significant cost especially when I have two children who require this assistance. We are fortunate to be able to afford to pay for this tutoring but I would say the average person is not. Also, there is no tax deduction/credit available for a service the schools should be providing with the tax dollars I'm paying.