(If you are tardy to the party, Part 1 is here.)
As the appointment for the test at All Children’s loomed closer, a friend came forward who has known my daughter since she was 3 and offered to pay whatever the Sertoma grant didn’t cover. “I get paid an extraordinary amount of money for what I do, and I wouldn’t be able to sleep at night if I did not help your child,” she said, while handing me an envelope of money. So now I had the appointment and the means to pay for it! Like a miracle. THEN All Children’s called because they had a cancellation and were able to fit her in in Oct instead of Feb!! That is a whole semester of school difference, HUGE in high school! They sent me about 8 pages of info to fill out – which Jan helped me with. It started with how she ate as a baby and went on to distractions, favorite toys and reading history. Through the process of filling this out we learned my daughter was distracted by pencils scratching during test taking.
Also: During her annual standardized test in 8th grade she missed a few hours of school to get her braces off. When she came, back she was put in a quite, private room to finish the test. Suddenly her 56th percentile became 92nd percentile! She took a TAPS test which showed low average memory of verbal cues. She took the GORT4 and scored below average. We had a SIFTER form filled out by her English teacher. Jan also noted that she reads without expression despite an upbeat personality and great verbal skills. Her tolerance fading memory profile was low but her decoding & integration profiles seemed above average.
Yep, there was a lot of vocab to learn!
All Children’s tested 5 areas, 3 that are auditory specific and 2 that entail “higher order” processes but do have some auditory components. These are Decoding, Integration, Prosodic, Tolerance Fading Memory and Organization. My daughter got a good night’s sleep, had a healthy breakfast, then took the day off of school to get test. We expected a 4 hour test. Turns out is usually a 4 hour process which includes waiting, testing, waiting for results, reviewing results, etc. It all went by much faster than I expected. Part of that was because my daughter is older and could express herself. She didn’t want to stop for a snack, she could easily follow instructions, she didn’t cry when we were in separate rooms – testing a 6 year old is a whole different ball game.
Anyway, when the tester – the one and only tester in the 3-county area – came in with the results, she started by saying, “This is one of the worst cases of APD I have ever seen.”
Yep. My daughter was in the 1% area for some of these tests. And she was getting As and Bs in school. Her brain was working double-time. I told her she must be the smartest person in the whole family to have gotten this far and done so well!
Then I got a printed packet of info explaining each test they did and what her score was. And the tester sat with us and went over it. Then she gave us guidelines for successful management of APD and some strategies printed in triplicate to share with her school. Here is one example from the 11 page report on the test:
“The child is asked to repeat muffled sounding words. This is designed to measure the child’s ability to understand speech that is distorted and how the child will process unclear speech in class or home: Low range of normal – Raw score of 29 – Scaled score of 9 – in the 37th Percentile rank.“
I took my notes from reading, “When the Brain Can’t Hear” and the notes from the test and made a list of what my daughter specifically had trouble with and how to help her within a classroom setting. The books spoke about different ways auditory and hearing issues present themselves in different people. Some I could not relate to at all. But some made perfect sense. Apparently many kids with APD do better in school with math and art, but not reading or history. That totally describes my daughter. One case in the book spoke about a boy whose math grade started dropping, which seemed out of character for him, until they realized the 7th grade band started practicing in the room next door at the same time. There were 2 passages in the book I was excited to read to my family. The first was regarding listening to a teacher in the classroom. Many people don’t stay focused and get their point across easily. This includes teachers. They may go off on a tangent or get asked a questions. A teacher may use more words than necessary and verbalize their train of thought instead of just the important information. Here is how many high school teachers give an assignment:
“Okay class. Your next assignment is to write a term paper. Now don’t complain, it only needs to be 5 pages long. I know that sounds like a lot, but once you get started it will be
easier than you think. And you can write about anything you want, as long as it is somehow related to the American Revolution. You can write about Paul Revere’s ride, or the first shots at North Bridge. Anything that interests you. I really just want to see how well you put your ideas on paper. And if this is Monday, and I give you until Wednesday, that should be plenty of time – yah, two days is fine.”
I read this to my daughter, and then I asked, “What was the assignment?” She said, “Write a paper… something about America. Can you repeat that if I turn my music off?”
When I read the same paragraph to her sister, she said, “The assignment is to write a 5 page paper about the American Revolution due Wednesday.” She got all the details.
A teacher who has already given the assignment twice might not have the patience to repeat it for my daughter just because someone else was talking and she couldn’t understand the end of the teacher’s sentence. All of the teachers are supposed to use Google Calendar to list tests and assignments, but that doesn’t usually happen. If it did, she could come home every evening and check the Google Calendar and stop stressing over mishearing assignments.
The other part of the book I loved was about “hearing closure”. An adult who is conversing in their native language about a familiar topic has the skills to “fill in” periodic blips in the intelligibility of the conversation. This is called closure. If someone closes a door or sneezes while you are listening to a conversation, your brain automatically can figure out what someone said to you, and you don’t realize what has happened. However, children don’t have that high level of practice. Students don’t have the high level of background familiarity with the topics or vocabulary they are being instructed in (they are, after all,
learning). People listening to a second language don’t have the ease of decoding.
If you are in a lecture hall and learning about volcanoes and you happen to be near the A/C vent and some chatty girls talking about last night’s party, it might be hard to hear the professor. Suddenly you catch the word “Helens”. He could be talking about his wife Helen. Or changed the topic and is talking about Helen Keller. But chances are since this is a volcanoes lecture that he was talking about Mount St. Helens. You would only know that if you had some knowledge of the topic, though. So if your class is talking about conducting a mock trial and your teacher is discussing the prosecutor, and you’ve never learned what a prosecutor is, and the kid next to you starts drumming on his desk and humming “Smells Like Teen Spirit”, you might completely miss what a prosecutor is and what their role in a trial is. Now grades start to plummet.
My daughter’s decoding is kind of like the hearing equivalent of swiss cheese. If
people are having to strain to hear the words, they have less brainpower to devote
to understanding the words, and less brainpower to devote to thinking about the
concepts being discussed, and less brainpower to devote to remembering what is being taught.
Now it was time to schedule a meeting with her school and review these results. Jan’s boss and the head of guidance counseling were the people I was scheduled to meet with. They would then tell each of her teachers what they needed to know. I took the list I had made of what my daughter specifically had trouble with and how to help her within a classroom setting and shared it as a document on Google docs. I also emailed it to both of the women I was meeting with and myself so I knew everyone had a copy and all teachers would have access to a copy. I came armed and dangerous, ready to advocate for my child!
I listed everything that would be difficult for my child based on her test results and recommended strategies for the classroom to help with those things. Let her sit in the front row away from windows, let her wear headphones during a test, teacher may need to gain her direct attention before speaking to her, state the purpose of intended activity to orient her attention. I asked for permission for her to make audio recordings of lectures, listen to audio versions of literature assignments, and her best friend became an iPad – which allowed her to do many of these things, along with taking photos of the blackboard during lectures in case she missed information when trying to take notes and hear the teacher at the same time. (Remember that test in Part One with the shapes…?)
The women at school during my meeting literally applauded me. “Parents come here all the time telling us their problems, but they never offer solutions.” They said. They wrote me a thank you note. Jan asked if I wanted to work with her. Seriously. I wanted this done right and I made sure there were no gaps or excuses, or I’d only have myself to blame.
The guidance counselor faxed something to the SAT people. She shared the information with all of my daughter’s teachers. My daughter got swtiched from one history class to another – same lesson, same teacher, but a quieter group of kids. She got to leave the room for math quizzes for the quiet, proctored room. She got to take the PLAN (pre-ACT) with a group of 14 others who had a doctor’s note about private testing. And during midterms she had her own quiet room with a proctor, and they let her remove the ticking clock when it bothered her.
The accommodations went above and beyond what I could have hoped for! Her school was behind her and wanted her to succeed 120%!!
I also gently reminded them that we all have days when we feel like we are repeating ourselves over and over. We get frustrated and annoyed. But if my daughter asks to have something repeated just one more time, please believe that she was probably listening and focused, but still might not have heard you accurately – and by asking for you to repeat or rephrase yourself, she is doing exactly what a student is meant to do.
Then we met a special woman who I am not supposed to mention. I’ll call her Linda. Linda was acting as a tutor at school – but she was so much more than that. She was a reading specialist with a background in learning disabilities. She learned from the team who coined the term “dyslexia”, and had her own handouts and study sheets to help my daughter. They were generic tools that could be used for all types of studying, in all different classes. And they went in a binder that she can take to college if she wants to!
Linda reassured my daughter that she was bright and creative, she just processed things a little differently. She also told her to “suck it up” and realize now that her brain wasn’t going to change and the world wasn’t going to offer shortcuts. I loved her knowledge and her attitude! I wished I could afford to have her study with my daughter once a week!
As it turned out, we could afford 5 sessions with Linda. We’ve used 3 to get my daughter on track for high school freshman year. We’re going to save two to help with studying for finals at the end of the year.
I sent a thank you note the woman who told me her daughter was a successful college student with APD.
I hope this post reminds you that we have all kinds of minds, to give people the benefit of the doubt, and to advocate for your child like their life depends on it. By doing so, they will learn self-worth and how to advocate for themselves in the future.
And if you don’t believe me, you can read “Outliers: The Story of Success” by Malcolm Gladwell, which debuted at number one on the bestseller list for The New York Times.