Last year my daughter was in 8th grade. She thought she was dyslexic.
Have you ever heard of a student in an advanced prep school with A/B grades diagnosing herself with a learning disability?
Well, my daughter did. She did a lot of research, and then made a comic book about it as a school project. When the tutoring center at her school saw the comic book they wanted to publish it for newly diagnosed kids to read to help them understand dyslexia. Which was great kudos for her, but didn’t help her with the fact that she felt like there was a piece missing in the classroom.
I’m going to take a step back for a moment… Since 2nd grade I thought my daughter read differently. And “differently” was the only appropriate word that I, as a mom but non professional, could find to label my thoughts. My mom and her sister are severely dyslexic. I’ve seen how they write, spell and learn. And that NOT my daughter.
Her teachers thought she needed to read more and be read to more. We did fun reading and school reading together when we could. We also did some story writing together. I wanted to encourage her without driving her nuts. Reading still wasn’t fun for her. The biggest problem I noticed was all the “little” words getting mixed up: of, and, on, the, if, she… she kind of glazed over these words and lumped them all together and made them interchangeable.
Then in 5th grade she thought she needed glasses. She could see the board, she could read her books, she could read street signs in the car (but it made her carsick) – but her teacher spoke about her son having a tracking problem when reading, and my daughter thought maybe that sounded like what she was dealing with.
We went to the eye doctor. He was so great with her age group! After a few tests and a lot of talking he explained that during puberty most kids start to have a change in their eye adjustment. They look at the teacher and board, and then down to their desk for notes or a text book – up and down, back and forth – and their brains auto-adjust throughout the day. Some kids notice this adjustment and some do not. Wendy was getting dizzy from it. He said we could clarify the far away stuff with prescription glasses, or the close stuff with reading glasses, and she would only need them for that back and forth reading. Transitioning. I opted for the $12 Walgreens reading glasses over prescription glasses, and she started wearing those for school and for some games at home like Mah Jongg that require looking up and down and back and forth. He said she could wear them when she wanted to, or not when she wanted to, and eventually her brain would make an easier adjustment and her eyes would get used to it. (She slowly stopped wearing them this year, in 9th grade.)
So her grades continued the same, and her eyes continued the same, and she didn’t like to read anything but “Twilight”, and she’d ask me to read her homework assignments, like a chapter in her history book, out loud to her. Sometimes we traded off paragraphs. She always sounded dull and annoyed when it was her turn to read.
But then 8th grade came along and she did her own research on dyslexia and thought that sounded kinda like her. So I figured she should get tested. It seemed odd to me that a dyslexic kid would be able to easily do her own research and write her own book about it. Shouldn’t that have been a struggle??
Her private school had some testing resources. I was told they could test her to the point that if she needed special accommodations within the school, that the teachers would go with their recommendations. But if she had a national or standardized test, she would need official documentation from the testing center at All Children’s Hospital. I had heard stories about psychologists doing 5 hour tests for $1700 and that scared me.
One day in the parking lot at school I saw a car that had HUGE letters on its back window. “DYSLEXIC? NEED TESTING? CALL 727-555-1212.” or something like that. I called and got one of the ladies from the department at our school that did the testing. I asked about the 5 hour tests for $1700, and she said more than likely it would be a whole day of testing and insurance would cover it, and I’d have a $40 co-pay.
I asked the pediatrician. We had to make an appointment and she asked my daughter a few questions – but just so she could write a prescription for the test. She didn’t watch my daughter read or write or anything like that. She suggested I call All Children’s about a Language and Literacy exam.
I did. It was over $1000. The wait list went out 4 months. I figured that would be just in time for 9th grade. They gave me the codes to call the insurance company with, where I promptly found out it would NOT be covered by insurance.
I went back to the school. I asked to do as much testing there first as we could to help pinpoint where her problems might lie. The first thing the tester, Jan, did was ask for a 2-3 page writing sample – hand written, rough draft. So my daughter wrote about her summer vacation hiking in Yosemite. She used the same excited and upbeat delivery she would if she were telling you about her wonderful, Neverland hiking experience.
“This is not the writing sample of a dyslexic kid.” Jan said immediately. “The spelling is fine, words and letters are not confused, she gets her point across like an 8th grader at private school – which she is.”
So my daughter saw Jan for a few tests, which she did 3:30-5pm for about 2 days/wk for maybe 3 wks right on campus after school. They kept narrowing down issues and trying to pinpoint which tests she did fine on. My daughter liked Jan and was very open with her. Slowly Jan started to realize with tests made her cringe and which her body language relaxed for.
And it turned out she was not dyslexic. “I think your daughter has an Auditory Processing Disorder,” Jan told me. “A dyslexic person has trouble processing what they see. Your daughter seems to have trouble processing what she hears.”
The tests my daughter did poorly on included things like recognizing words that sound similar if the teacher covered her face. She’s put a piece of paper over her face and say, “Bull. Bowl. Same or different?”
There were also tests that involved listening to a tape recorded story. What if the sound went out on one headphone, just one side? Could she recall what the speaker said? What if there was music in the background on one side? One test imitated the sounds of a cocktail party and she had to raise her hand every time someone said “bird”. That was very hard for her.
Suddenly my daughter realized, and was able to explain to us, that she could hear everything. She thought she had super powers.
“I hear the bushes rustling outside your classroom even when the window is closed,” She told Jan. “The sound of your clock ticking distracts me during test,” she added.
This is called a foreground/background issue, or figure-ground. She hears background noise at the same volume as foreground noise. So the overhead projector motor is the same level as the teacher and the kid hummingKaty Perry and the boy kicking someone’s chair and the pen being click-click-clicked behind her, and even her own hair by her neck!
Then Jan started listening to my daughter read. She had that same bored, robotic tone she had with me. I thought it was her attitude about reading that made her sound that way. When she talks she is super animated and upbeat. I thought she was reading like a robot because she was being a poophead about having to read out loud… with mom… again… about history.
But Jan asked, “Why don’t you read the way you speak?” She suggested she use inflection and tone, like an actress. And suddenly the robotic tone was gone. It never occurred to me that an 8th grade simply didn’t realize HOW she sounded to others!
The next step was calling the pediatrician for a new prescription. I didn’t need to take her to All Children’s for a Language and Literacy exam. I needed to take her for an auditory processing test. This one cost even MORE and had a longer wait list. Apparently ONE woman in 3 local counties does all the auditory processing testing.
So now it was Sept. and I had an appointment for Feb. and a $1500+ bill to consider.
Three friends, including my aunt who apparently went through this in California with my cousin, suggested that perhaps the public school system would know more than my daughter’s private school about financing these tests. I consulted the “Great Googlie Mooglie“ because Google knows all. I found a page about testing within the Pinellas County Public School system. From that page I chose one woman to contact simply because I liked her name. I left a brief voice mail message.
She called back! She started by saying that there wasn’t much she could help with, kids in the public school system would do the same thing we did – some initial testing and then the big test at All Childrens. BUT she did have some insight for me, because her daughter had APD (my new anagram for Auditory Processing Disorder)! Boy did I get the right lady to talk to. She said a private psychologists office might give the test at a lower cost if they knew insurance wasn’t covering it. She gave me the names of 2 doctors to call. And then she mentioned the Sertoma Foundation, which helped finance medical hearing stuff for kids. She also asked me to tell my daughter that HER daughter was a successful college student dealing with the same issues every day.
Back to Google. I emailed the 2 doctors and I emailed Sertoma. One doctor was no longer offering the APD testing. The other didn’t get back with me (for 2 months.) Sertoma said they had a grant I could apply for. After their coverage my cost would be $708. I jumped on it. I explained that I did not want to take money that might keep a child from receiving cochlear implants – or some major life changing thing like that – but I did want my daughter to have the option to take her SATs in a private, quiet testing room.
Back to Google to arm myself with info about the test and how to use the results. I had new vocabulary and new understanding for how awesome my kid was getting great grades at a tough school. I found a few books on the topic and they all referenced the same Mack-Daddy book of them all, “When the Brain Can’t Hear“. I requested it from the library.
And then I got a taste of her issue. One of the testers at school had a website to visit, a special series PBS did called “Misunderstood Minds”. There was a little test to take that involved simply moving shapes around, while hearing a classroom the way my daughter did. The teacher’s instruction and the hum of the A/C and the other kids chattering all got blended together. When I first took the test, I reached to raise my laptop volume to help me finish the test, but this of course raised the volume of everything, not just the teacher.
And I started to CRY! Not because I got the wrong shapes in the wrong places, but because I finally understood what my daughter was going through. All this research and phone calls and meetings with Jan… and I could now wrap my head around it from my daughter’s perspective. I wanted to show the test to the world. I wanted everyone to get a taste of this misunderstood, misdiagnosed, almost unheard of thing! I at least wanted every teacher and family member to try it out.
Seriously, please take the test. Just click. It’s cute and eye opening.
Did you get the right picture at the end? Did you want to tell the kids around you to shut up? Did you want to get closer to the teacher or read her lips? Do you understand how different brains work differently just a tiny bit more now?
More on how this worked out for us in another post…