Wisconsin Legislature



Over the last year, I remember two moments very well. First, standing in my kitchen reading a parent handout. It was informing us that my first grade dyslexic child should not sound out words. Second, when a private psychologist told me and my husband that our daughter even struggled with her own name, and she wrote her exclamation points upside down. I am a pediatrician, mother, and former teacher. I have a story to share that includes my daughter, patients who are students, and my experience with a rural public school district. I would greatly appreciate if you read my testimony. My daughter came from a home that is rich in literacy. You have never met our daughter, but I guarantee that you have met children like her. She is the respectful, social and well-behaved girl in the kindergarten or first grade classroom. Her teachers described her as “one of the brightest” and the “mother-hen” of the class. My daughter’s favorite story at age of five was the classic the The Lion, the Witch and the Wardrobe on audio. She could comprehend the entire audio book. She is a delight to have as a daughter, and her teachers felt the same way about her as a student. She is very smart and never caused a problem. This, I believe, made it hard to see that she had a problem.Our daughter read early reader books when she started Kindergarten. But, these were the only books she was reading well when she started first grade. I became concerned when SN’s progress halted. Within a couple months of first grade, this same bright eyed, bubbly girl did not want to sit and read a book to me. She was inattentive, and she did not want to read any new books. She started to do unusual things when she would read to me. One example is when I watched her take her two fingers and outline the shape of the word. I saw her do this once. She would also heavily rely on picture clues. SN appeared to guess words after reading just the first letter. Looking back, these were her coping mechanisms. Take these away, and months later, I found out that my child could not read. Time went on slowly. I was told that SN is struggling because she is trying to sound out words. This approach to reading was discouraged in her classroom. I received that parent handout shortly after she started 1st grade. On most afternoons after school let out I put all my energy into trying to get SN to sit with me and read. By winter my son, who was in Kindergarten, quickly surpassed my daughter with his reading. My son’s academic gains made me take a step back and realize that almost half of the school year had gone by, but for SN, reading was becoming more challenging and she was still not improving.It was a typical cold Saturday in January for our family. We were snuggled on the couch. I coerced SN to read a book with me. She came across the word “singing” and struggled. I sounded the word out. She replied, “But mommy I see the word is”. That is when I realized that my daughter may have a learning disability. This pause in her learning also showed on her state test scores during that school year. During teacher conferences this past February, SN’s teachers provided reassurance since she was still reading at grade level. This is where our opinions differed. In my view, regardless of what grade or level a child reads at, students should always make progress. It is like child development. Also, I did not understand why SN was instructed to not sound out words. However, despite our differences, I think our story is unique compared to some other families in one way; SN’s teachers truly cared about her more than they cared about being right. The educators that watched the system fail SN want to learn more about Dyslexia. In our small community, it was my daughter’s wonderful teachers that clearly saw the problem after SN’s diagnosis. It is these individuals, who are compassionate and committed, that want to make a difference to help other children like her. Educators appropriately acknowledged my concern and recognized that SN was struggling with something. SN was then evaluated by the reading specialist at her school. She first tested SN on what is known as one of the hallmarks of Dyslexia- phonemic awareness. SN scored in the 3rd percentile. Some small interventions were implemented. But, I told her teachers that this may be Dyslexia. Her teachers told me that they knew very little about this learning disability. With good intentions, one of her classroom teachers told me that SN was struggling with her reading because, “she was trying to sound out the word.” It was at that moment that I realized there had been a big shift in reading instruction away from basic phonetic principles. I have not yet mentioned my daughter’s inability to spell or correctly punctuate a sentence. Her writing was not legible. SN could not read to me what she wrote in class on most days. A sample has been provided. SN’s teachers and the school reading specialist were not concerned about Dyslexia. But, they also willingly admitted what they did not know. My daughter did not qualify for an IEP. Her writing did not flag on any tests and was not brought to my attention. Despite teachers’ kind efforts to help SN best they can, this was still an isolating experience. I was the only one with this concern. Thankfully, I connected with an Orton Gillingham (OG) tutor and then a private psychologist. The weeks started to go by a little quicker.This brings me to the local library conference room where my husband and I met with a private psychologist to discuss the results of SN’s formal evaluation. I found out my SN has Dyslexia. She has an IQ close to the 90th percentile. Yet, she cannot read or spell or write very well. SN was trying to sound out every word even though she was told not to. This was not because of defiance. This was because of her disability. Phonics based principals was not why she was behind in her reading; it was the lack there of that brought her learning disability to light. Following her private evaluation, I found out that our local public elementary school adopted a reading curriculum by Lucy Calkins. This curriculum does not emphasize phonics. SN’s first grade teacher told me that “phonics just kind of fills in.” Interestingly, the private psychologist around this time told me two more things about this curriculum: 1) It will not fit the learning styles of 30% of students and 2) SN is one of them. Along with my medical background, I obtained a teaching license while in college. I student taught in a primary elementary classroom. I know that learning disabilities are common. I know that Dyslexia is one of the most common learning disabilities. I only learned about Dyslexia in medical school. I did not learn about Dyslexia while obtaining my undergraduate degree. I worry that many teachers have the same experience when obtaining their teaching license. I educated a fantastic group of women about Dyslexia including a school psychologist, principal and two teachers at my daughters 504 meeting. I watched the school psychologist read over SN’s formal evaluation. She jotted down notes on her paper about the types of tests that she has not familiar with that picked up on SN’s weaknesses, such as her poor orthographic skills. It was at that moment that I realized that there are educators who want to learn more about how the SN’s in the world fall through the cracks. I also realized that I am fortunate- all my training paid off. Sadly, educators in our school district knew nothing about this learning disability which means no one is looking for something that 5-20% of the student population struggles with. I believe these educators would jump at the chance to learn more about Dyslexia. I do not want another student and family to struggle because of this hole in the school system. This is because, chances are, in this small town, they will also be my patient. I care a lot about my patients. In my office, I have come to find out that this is happening to some of them. As a pediatrician, I see children for inattention problems. Attention deficit disorder is a diagnosis of exclusion. I can diagnosis medical conditions but I can only suspect, not formally diagnosis, Dyslexia. This either forces families to seek out an evaluation by a private psychologist or children go undiagnosed. The problem for many families is the cost. Most insurance providers, including Medicaid, do not cover this unless there is a medical reason that could explain the disability, like being on chemotherapy for cancer. Additionally, 30-50% of my patient population is covered by Medicaid. Unfortunately, our county has a high poverty rate. Most families cannot afford the private evaluation I recommend. I cannot get this diagnosis for my patients who I strongly suspect have Dyslexia since our school district cannot identify this disability and their insurance will not pay for the recommended evaluation. My patients are continuing to struggle academically. Yet, academic achievement is tied to so many positive outcomes. More specifically, academic achievement is especially important for a community who has a high prevalence of children with high Adverse Childhood Event (ACE) scores - a community like mine. I contacted someone new -the Superintendent of the Public School District over the phone. He is aware of my personal and professional story. I suggested that some professional development for teachers with a medical professional, OG tutor and private psychologist could better equip them for recognizing and accommodating Dyslexia. I spoke to the director of student services, a reading specialist, psychologist and the assistant superintendent of instruction to discuss this further. The Superintendent made it clear to me, given the resources we have available today, the district was not interested in either a professional development series on this topic or a meeting in person or with other professionals to help figure out how to better meet the needs of dyslexic readers. The Superintendent told me that this school district does a “good enough” job identifying dyslexic students. He knows about the children in my life, including my daughter and patients. I am writing to you today because his good enough is not good enough for me-- they deserve better. They deserve evidence based instruction. Every child regardless of who their parents are has a right to an educational evaluation that rules out common learning disabilities. This should include Dyslexia. According to a 2009 policy statement from the American Academy of Pediatrics (AAP), “the educational system has the triple responsibility of early detection, evaluation, and treatment of children with learning disabilities.” It is difficult for dyslexic children with normal to high IQs and subtle coping mechanisms to be identified, especially when the schools are using different assessments. We need to look for them. We will miss 100% of the dyslexic readers we do not look for in our classrooms, like my SN and my patients. Also, it is especially important that we specifically look for dyslexic students in school districts who adopt a reading curriculum that is not phonics based. To conclude, the state law should require schools to train their psychologist to properly identify Dyslexia and provide funding for the school to implement evidence-based interventions. Given the prevalence of this disability, primary elementary school teachers need to receive proper education on Dyslexia to help identify students at younger ages. We want to identify all students with disabilities and we want to do this before they are failing. Academic failure has been tied to mental health problems. Lastly, the state should encourage schools to partner with local physicians, psychologists, and OG-trained professionals to help best meet the needs of students. More specifically, when there is a concern that a child has a learning disability, there should be a better process in place to help medical professionals, educators and families communicate effectively. This partnership can ensure that students obtain the proper evaluation and interventions. I am a mother, pediatrician, and teacher. With all my heart, I want children to be safe, healthy, and literate. I hope your committee will make a decision that will support me in this effort.SN’s writing sample at age 7. Please see below. ................
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