Headaches, light sensitivity, difficulty reading, poor concentration. These are just some of the symptoms of, well, a lot of different problems, which is why getting Irlen syndrome diagnosed can be a long, frustrating journey.
My Daughter’s Journey With Irlen Syndrome
My daughter Regan was diagnosed with severe Irlen syndrome one week after her seventeenth birthday after just beginning her senior year of high school. She had been struggling mightily in school since about sixth grade, and we did not know why. I had her vision checked, but she has perfect vision. We bought low magnification reading glasses anyway, but they didn’t help.
She hated reading and refused to do it unless she was absolutely forced to. She suffered daily from headaches and frequent migraines. She was exhausted and took naps every day after school. Her self-confidence suffered from feeling so inept in the classroom, regardless of believing she should be “smart enough” to be able to function like her classmates.
No teacher, aide, or anyone at any school she ever attended even noticed her struggles—at least not enough to address them.
We heard about Irlen syndrome during Hurricane Harvey, when a friend happened to mention it as we helped them clean out their flooded home—their son, who was also helping, had forgotten his glasses with Irlen-tinted lenses. They started to describe his symptoms to us.
To my shock, I recognized every single one, as my daughter had been describing them to me for years!
According to Irlen.com, common symptoms are:
Poor academic and work performance
Inability to sit still
Lack of Concentration
Within these general areas, these specific problems may manifest:
Print looks different
Environment looks different
Slow or inefficient reading
Difficulty with math computation
Difficulty reading music
Poor sports performance
Symptoms vary by individual and will not come and go. Until corrected, Irlen syndrome can be a lifetime barrier to learning and performance. We had no idea there was such a thing, and I was so excited to have my daughter tested, which we did as soon as possible.
The Irlen screening process was the most fascinating with hours of my life! During the testing, when Regan was able to read the way a normal person does for the first time with her Irlen-specific color overlay, she burst into tears. Her screener and I did too. She had never seen the written word like we do before.
It was like the videos you see online of the deaf child who hears his mother’s voice for the first time. Absolutely priceless! We still get emotional when we think of that moment. I think we always will.
Regan’s diagnosis was life-changing for her in every way, but also a little terrifying. As grateful as we are for the diagnosis and her Irlen lenses, we know there is a lot she has missed out on over the years. She and I both want to prevent other kids from going through what she has gone through since elementary school.
The Mission: Raise Irlen Syndrome Awareness
We want to make it our mission to tell anyone who will listen about Irlen syndrome—its symptoms, how to be tested, and how lenses can change their lives … and the sooner the better! If we can succeed in this, then wearing colored lenses in school will be a normal part of every classroom, and these kids will not have to feel “different” or “weird.”
Irlen syndrome affects 14 percent of the population and is more common than asthma and heart disease. Irlen syndrome impacts the brain’s ability to process visual information, affecting daily functioning.
Irlen syndrome affects millions of people of all ages and ethnicities worldwide, but it is not yet identified by standard educational or medical tests. It affects 46 percent of individuals with reading and learning difficulties and 30 percent of people with ADHD and autism. Without testing, most of these sufferers remain unaware of the true source of their problems and may instead be diagnosed with ADHD, dyslexia, behavior or psychiatric problems, while Irlen syndrome goes unrecognized.
Irlen syndrome has also increasingly been linked to a significant portion of individuals with brain injury, chronic headaches and migraines.
Consequences of Undiagnosed Irlen Syndrome
Failure to identify and treat Irlen syndrome can have severe consequences ranging from academic and workplace failure or ongoing physical and emotional symptoms to increased likelihood to enter the criminal justice system. Up to 80 percent of our prison population may have Irlen syndrome.
Since my daughter’s diagnosis and seeing not only the physical changes but the mental and emotional effects that Irlen syndrome has had on her, I have made it my personal mission to inform the public about it. Not one child should ever have to suffer like Regan did because they did not know about Irlen syndrome!
I have started a Facebook group called The Irlen Syndrome Parent Connection which is focused on raising awareness and giving people a platform to connect, share their stories, ask questions and find out information. We have well over 1,000 members from around the world in just weeks of the group being started.
I am working with the Irlen Foundation in California to raise funds and award scholarships for kids and people who can’t otherwise afford the testing and lenses. Health insurance does not cover the cost of Irlen testing and we want to help make it not only available, but affordable for anyone who needs it.
Please visit our Facebook group for more information and insight on Irlen syndrome. You may also contact me with questions via Facebook or by leaving a comment below.
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Janelle Martin, a Texas mom of two, has two degrees in biology and accounting and is an avid scrapbooker, sports fan and advocate for Irlen syndrome.