I will start from the beginning of my journey, as it is the best way to show you all the struggles that I have faced. It can also, let those who are dealing with the same or similar issues, feel that they are not alone in the world.
My oldest child, Amy, was born 4 weeks early. She had a rough start in life. She was severely jaundiced. Her bilirubin levels reached 23.7. The pediatrician told me that some children can have cognitive damage, when those levels reach 24 or higher. Well, I was a very worried first time mom. That level of 23.7 had me concerned.
I am a mom, who is educated. I work with children in the Early Intervention program (birth to 3). So, I was on top of all my childs early milestones, which she reached, all pretty much on target.
Then, in preschool, Amy started to have difficulty with recalling words to songs. She had difficulty with distinguishing her left from right. She was always a step behind in her dance class. In preschool, the 2 years before kindergarten, she was spending 2 weeks on each letter of the alphabet. She would come home with a project, and could not tell me the name of the letter she was working on. A letter that she saw repeatedly for 2 weeks in many forms. She had a hard time learning to write her name. She wrote many letters backwards, (the letters that she knew). She couldn’t remember the 4 lines to the poem that she had to remember in kindergarten.
By the end of kindergarten, she still couldn’t tell me the names of all the letters. She progressed extremely slowly with the reading program in school. She was great at remembering stories that her teacher read out loud to the class. She continued to write numbers and letters backwards. It took us an hour to do one worksheet at home. For first grade, she was placed in a classroom with extra reading support, with a reading specialist who came into the class.
Upon entering first grade, Amy still did not know all the letters of the alphabet and was really struggling to read the most common of words that they were learning in school. We continued to struggle with homework, spending more than an hour on a worksheet that her peers could complete in 10 minutes. We also noticed that she said “huh?” often. She continued to lag behind her peers in reading. She progressed very slowly. Both meetings that I had with the child study team, led to them NOT evaluating her. Despite my best efforts to explain to them, that I knew that this was more than immaturity, that this was a true reading problem. She was not evaluated because she was NOT a full year behind learning expectations. She was being serviced by an intervention and review committee. We met as needed to discuss what to do to help her. They knew that she needed to be evaluated, but, our hands were tied. She did well enough in her other topics, especially math. The only problem with math, was that the school uses a math program that relies heavily on word problems, thus her needing to be able to read. We started private tutoring, halfway into the school year. Our tutor, was fabulous and genuinely concerned. She knew that there was a disability there, too.
Near the end of first grade her teacher recommended that she be held back. I absolutely refused, knowing that holding her back would not solve her reading problem. I knew that she had a reading disability. Holding a child back for that would not allow her to catch up. I knew that we needed to get outside help, after the second meeting with the child study team led to them not evaluating her.
Over the summer between first and second grade, I met with a neurodevelopmentalist. My health and science education led me to believe that she definitley had a hard time processing sounds. The neurodevolmentalist recommended Central Auditory Processing (CAP) testing. We scheduled that for October of her second grade year. Over the summer, she was tutored twice a week. We were facing this head on. She entered second grade reading at a beginning first grade level.
