- Posted June 18, 2014 by
This iReport is part of an assignment:
Raising a special needs child
Hidden reading disability
- Jareen, CNN iReport producer
Enter KG, the screening test was awful. I left the screening in tears. "It looks like he just isn't ready for KG. I can't have a child in class who is resistant to my instruction." "His sister on the other hand, will fit right in". How can you tell your child that his twin sister will be going to KG, but not him??? Agony, I tell you. I fought back and insisted he would be ready. That he was just incredibly shy and I promised he would not be a behavior problem. Which he never was. Fast forward to the starting day of KG. He was so excited to go to school. That lasted about 3 weeks and then school was no longer fun for him.
About November I started getting emails from his teacher...."He isn't learning his letters, we just don't know what it could be, he just isn't ready to be in school, here's the paperwork to hold him back". I immediately took him to a learning center in town where he made exasperatingly slow progress at learning his letters. This center did not believe in diagnosing children with any disability because then they would be labeled for life....um, okay, but how will I know how to help him if I don't know what this is? They just kept telling me that he needed a small environment to learn in. This learning center cost us $1200/month! He was there for 7 months. At the end of those 7 months my child could identify the alphabet, but still could not read or do basic math problems!
So I decided to homeschool him for 1st grade, mostly because his self-esteem was absolutely squashed beyond recognition. The little boy who was excited to go to school now cried every morning and every evening begging me not to send him to school. He had stomachaches and didn't feel good A LOT!
At my various teacher conferences in KG, the teachers didn't know what could possibly be wrong. "He seems so bright, I'm sure he will grow out of this, but he just can't learning his letters". I can still see the school VP literally shaking her head at me when I refused to hold him back.
1st grade at home was a complete and utter failure. I ended up most nights crying in my closet at the end of the day. He would know things one minute and the next day, it would be completely gone. I spent countless hours researching how to teach children to read. Nothing I came across ever mentioned dyslexia. We made little progress that year, except his self-esteem was back. He was fabulous at science experiments and our nature walks. Math and reading..........still exhausting with miniscule progress.
I made the decision to put him back in school in 2nd grade because I felt like a failure. The teacher emails started earlier this time, probably around September. He was put in RTI and was making no progress at all. The teacher said to me, "I'm wondering if he has dyslexia. He is writing his words backwards". The word NO was ON, TO was OT, etc. I went home and researched dyslexia that night and now I have a "before dyslexia" life and an "after dyslexia" life. He had absolutely every classic dyslexic red flag warning (seeing words backwards not being one of them). I immediately took him to a neuropsychologist for a complete evaluation where he was diagnosed with dyslexia, dyscalculia (a math disability), and dysgraphia (a writing disability). He had a fabulous teacher that year who spent more time with him that she was allowed to and he did love her but still could not read. The only words he had memorized were CAT, THE. All the warning signs of dyslexia had been there all along but no one was able to see them.
My town had little resources. As a family we have spent close to $35,000 on various tutoring services that have only worked to a minimal degree. Due to the lack of resources in our town and the lack of understanding of dyslexia in our schools, we decided to homeschool him and I got trained in Orton-Gillingham, the method by which dyslexic students learn to read. He is now making astounding progress but it has not been without a huge sacrifice to our family. The emotional rollercoaster we have been on in fighting with the school district to financial distress on us a a family has been tremendous. But I look into my son's eyes today and see a bright, happy, well adjusted child who is learning to read, enjoying audiobooks, and finds the world a fascinating place with lots to learn about. He is no longer afraid of learning.
Having a child who does not learn the way the schools expect children to learn inside a box has been a journey of very low lows and very triumphant highs. I wouldn't trade it for the world.
My goal now is to educate the public about what dyslexia is because 20% of the world's population is dyslexic and these children are sitting in schools knowing they can't read like their peers. They get bullied and called lazy by their peers and their parents and teachers. I know no teacher goes to college not wanting to know how to teach their future students. They are simply not learning about dyslexia in college. There is a mountain of research and 20+ years of scientific evidence of what works for students with dyslexia and yet many school districts across this nation tell parents that dyslexia does not exist and they don't recognize it.
It is shocking to me that we know as a nation that literacy is a huge problem and yet no one is addressing the issue of dyslexia. Through this journey we have also learned that my husband is dyslexic. Did you know it is genetic? True! My husband was told he was dumb in school more times than he wants to count. When we figured it out he said to me, "you mean all those people were wrong, I wasn't lazy and stupid?" How tragic is that?
DYSLEXIA IS REAL, parents and children are suffering every day because they are not getting the help they need.
Like many parents our journey has gone from struggling to advocacy. It is empowering to belong to a community of people advocating for worthwhile change in this world and I can't think of a better cause than to help children read. So every day I am grateful for my loving, adorable child who taught me what reading is all about!
- My life