The following post is the first of a multi-part series celebrating the students and parents whose stories make up our story. Max's mom, Kelley, shares their family journey to his dyslexia diagnosis:
Max’s journey to dyslexia began very early, around the age of 3 years. Max was born a healthy, happy, and vibrant little boy. He did all of the physical things very early; crawling at 6 months and walking by 8 months. As he started growing I began to notice he was not doing the “academic” milestones at the same pace as my friend’s babies and his developing speech was very difficult to understand. Fortunately for us, we had been participating in a program in our area called “Parent’s as Teachers” and our teacher had also noticed that Max was struggling in some areas. She administered a developmental test called “DIAL-4” and the results showed that Max in the 1st percentile. I was shocked. I was terrified. Was there something wrong with my perfect little boy??
We were referred to the Early Childhood Education center through our school district. Max was tested and they determined that he had a speech/language disorder; specifically he was deleting 100% of his middle and final consonants. This was the first piece of the puzzle. They said that this is probably the cause of his cognitive delays and they created a Speech Disorder IEP for him and he began speech services with the school district. They told me speech/language was the reason he was so delayed and he was too young for any other tests, so, we accepted that and began working on his speech.
Speech service continued for a year and at age 4, the year before Max started school, his Kindergarten assessment was performed and his scores qualified him for the districts pre-k program called “Wonder Years”. This is a program developed for struggling preschoolers and is intended to give them a boost before they start kindergarten. During his time in Wonder Years, Max struggled significantly with not only learning but with behavior issues and concentration problems yet the school system refused any additional testing because he was “too young”.
Kindergarten began and it was a struggle right out of the gate. Behavior issues continued to be a problem and Max was not progressing as the year went on. I knew there was something else going on and I begged the school to do an assessment but they continued to refuse due to his age. I discussed the problems Max was having with his pediatrician and he referred us to an outside agency called MAPS. One of their doctors performed an assessment and diagnosed Max as having ADHD. Another piece of the puzzle.
1st grade started and Max had made very little progress and was still reading at a preschool level. At this point he was still receiving speech services but no additional support from the school. I continued to beg the school district to perform an assessment but they continued to refuse due to his age. I even specifically asked his educators if he might be dyslexic and they said oh no, he isn’t dyslexic, it’s just his speech/language disorder combined with his ADHD. I had learned by this point that if you want something done you have to do it yourself so I called MAPS explained his struggles and asked if there were any additional evaluation’s that they could perform that might help us pin down what is going on with my son. After a new, more focused assessment with MAPS, Max was diagnosed with an “unspecified reading disability”. Another piece of the puzzle. I took the two evaluations from MAPS for the ADHD and the Reading Disability to the school and I demanded that they give him additional services. At that time, they updated his IEP to “Other Health Impaired” and finally offered him special education services.
2nd grade began and thanks to his new IEP, Max began receiving 1-hour of special education services per day in addition to his continued speech services. These new services in addition to private tutoring, weekend tutoring with the Ozarks Literacy Council, and Club Encore (after school program for struggling learners) were going to be the key to getting him on track and getting him caught up to the other kids in his grade. I was just sure of it. Mid-year assessments were completed and the “dial” had barely moved, he was only reading at a kindergarten level. I felt so helpless. I felt so defeated. What were we missing? At this point Max was pretty much done with school. He hated it. He was acutely aware that he was not as “smart” as the other kids. He was easily frustrated and once frustrated he would just shut down and turn off. We were in a vicious cycle. I wanted nothing more than to take this burden from his shoulders. Watching my child struggle and not knowing what to do to help him was one of the loneliest, most painful experiences of my life.
The final leg of our journey to dyslexia began in a strange way; it actually happened in a job interview. I had applied for a position in the Executive Office at CoxHealth and I was asked to interview with the CEO. During my interview we somehow ended up talking about Max and about his struggles in school. It turns out that his daughter is dyslexic and he and his wife have been the driving force for the creation of the Springfield Center for Dyslexia and Learning. He mentioned that Max’s struggles at school sound a lot like dyslexia and suggested that I reach out to the director of the Dyslexia Center to get Max an evaluation. We did the testing and received his results a few weeks later and the report said showed that Max has “dyslexic-like tendencies”. Dyslexia has to be diagnosed by a specialized physician so we were referred to the only doctor in our town who is able to diagnose dyslexia and then we sat back and anxiously awaited his report. Several months later we received the results and the final piece to the puzzle; Max is dyslexic and has poor working memory in addition to his ADHD. I felt all the pieces click together and a weight lifted from my shoulders. Now we know WHY. It explained everything he has been struggling with for so many years. I remember the first time we walked into the Center for Dyslexia after his diagnosis and I saw the faces of other kids that are facing the same challenges as my son and the faces of the other parents who have been fighting the same battles that I had been fighting all of these years. It was incredible to not feel alone anymore.
Max is now 9 years old and in 3rd grade and we have been working with an amazing tutor at the Springfield Center for Dyslexia and Learning since December 2018. Max also continues to receive private tutoring at school and at home and is getting 1.5 hours of special education each day. He is feeling more confident and is having more successes. He even moved the “dial” on his reading assessment and at mid-year is now reading at a 1st grade level. There is nothing “wrong” with him, he is perfect. He just learns differently. I have heard dyslexia referred to as a “gift”. I can see that gift in my son every day, in the way his mind works. He thinks of things that I would never be able to come up with and he see’s things in ways I never could. It is a gift that makes him unique and sets him apart from others. He has overcome more struggles than most other kids and I believe that adversity builds character. He is brilliant. He is vibrant and funny. He is intelligent and kind. He is clever and creative. He has a light inside of him that shines brighter than the sun. And thanks to all of the teachers, and tutors and doctors that have devoted their lives to helping little people like him overcome big challenges like Dyslexia, I know that he will succeed.