Because We Read with Our Ears… and Other Misconceptions
By Christine Gray, a mom
For the past couple of years, I have read dozens of posts and blogs written by friends and acquaintances who have struggled with a special needs child. Most of these stories shared are about their families who live with a diagnosis of autism or ADD that makes daily life a struggle. After reading these posts, I want to reach out to them, simply because I admire their strength and tenacity to live every day moment to moment. I want to identify with them but I honestly don’t know what it is to live with a child with autism or ADD, but I do know what it is like to live with a disorder that makes everyday a constant struggle.
My daughter O is a funny, smart, vivacious seven year old. If you look at her she appears and behaves normal. Although she is a little shy, she has the capacity to make friends easily and interact with others to the point where she is loved by everyone she meets. She has interests in running, science experiments, art, playing with her brother, and anything pink or purple. When she grows up she aspires to be a princess (Meghan Markle did it, why not?) My child is often described as sensitive, caring, loving, and has a heart of gold. With all of that being said, what makes me think I can identify with those other moms? She can’t read.
Throughout the past two years we have been completely stumped with was what going on. It all started with a parent teacher conference in which we were told O was possibly going to be retained in the first grade because she was behind in her reading level. She was also failing all of her other subjects. The teacher knew that something wasn’t quite right but could not put her finger on it. She recommended O for a child study evaluation that brought in professionals from all disciplines to test for eligibility for special education.
We endured all of the testing, our entire family put under the microscope and scrutinized by social workers, child psychologists, teachers, principles, and even speech pathologists. The entire time, O was in four intervention groups at school just to learn the basics of reading and phonics while her classmates advanced without her. The interventions were barely scratching the surface. O was making little progress. The chances of us being eligible for special education were iffy because eligibility is dependent on the standard deviation of two different scores. These scores include the IQ test administered by the school psychologist and the knowledge test. This knowledge test had to be read aloud because O couldn’t read it. Her reading level six months into the school year was a level B when her classmates were already way ahead.
While the school system was doing their thing, I decided to take her to her pediatrician, just to be sure it wasn’t anything such as ADD, ADHD, or autism. He evaluated her in the office for more than hour while asking an extensive amount of questions. The history provided and the evaluation didn’t match up. When the nurse came into the exam room to have me sign the “ADHD contract” he sent her away. More data is needed. We won’t know of anything until we get eht results of the child study
During this process, I was having dinner with some friends and I was sharing this with them trying to vent my frustrations about the entire process. A friend who just happened to be a retired speech therapist asked me about her vision. I told her the school already checked that along with her hearing before they would proceed with the child study program. Something about wasting money and resources….blah, blah, blah. She then looked at me and said, “not her visual acuity, her visual perception.” I looked at her and replied, ”she wears glasses, she can see just fine.” Famous last words.
This conversation sent the wheels in motion, and I will never forget my friend for this. I didn’t know who or where to go to for help with a diagnosis. The information on the internet is sparse with maybe one small blurb dedicated to the subject. The information provided stated there were about seven different manifestations of the disorder each with different treatments. The website did not offer any guidance on who to take my child to be evaluated for a diagnosis, and Barnes & Nobles along with the Chesapeake library did not have any titles on the subject that I can find, so it was up to my astute nurse detective skills to figure out my resources on my own.
The decision was a toss up between her pediatrician and her eye doctor. I figured we were just at her doctor’s office and that wasn’t anywhere on his radar soooooo…. The eye doctor it is. It was almost time for her routine evaluation anyways so what do I have to lose?
I took her in two months early. My approach was simple. I didn’t want to come off as a “Google mom” or “Wikipedia- nutjob” so I told her optometrist what was going on at school. Instead of telling him my diagnosis, I fed him the symptoms. She has a long range of visual symptoms to include a vast array of behaviors that are commonly misdiagnosed as other psychiatric disorders. These include
v Headaches
v Blurry vision/focus going in and out
v Eye pain
v Eye fatigue
v Words moving around on a page
v Avoids reading and/or writing
v Tilts head when reading and writing
v Letter/word reversal
v Loss of place while reading
v Slow reading
v Poor handwriting
v Difficulty when copying from board
v Avoids near tasks
v Short attention span
v Poor fine and gross coordination
v Loss of concentration
v Self soothing behaviors
Most people I have had random conversations with about this always end up with people saying, “maybe she’s dyslexic.” Wrong. Merriam- Webster defines Dyslexia as a noun in the English language that means “a variable often familial learning disability involving difficulties in acquiring and processing language that is typically manifested by a lack of proficiency in reading, spelling, and writing.” Most of the child psychologists I have spoken to during this journey vehemently argue that it’s merely a symptom that has no descriptive powers to the severity of the problem.
This history matched up with his exam. He would have O read three letters on the Snellen eye chart and she would sit there and meekly say, ”I don’t know” while bowing her head in shame. Once he isolated one of the letters at a time she was able to rapidly (and rather enthusiastically) identify the letters. One of the other main findings he noted is he couldn’t correct both eyes to 20/20 with glasses. Her best corrected visual acuity is at 20/50 for her right eye and 20/30 with her left eye. Together her corrected visual acuity for both eyes is 20/25. Simply stated, reading and comprehension is severely delayed because her eyes are not working together. O has a visual perceptual delay.
Right then and there, he said to me, “I can’t help you, but I know who can.” He advised me that the testing is expensive and it’s going to take a couple of months, but it will help.
More to come….the journey just got longer…