Wednesday, July 17, 2013

AN UNDIAGNOSED LEARNING DISABILITY

Children internalize negative messages from sources and influences around them. These self-perceived messages have a basis even if the rationale is faulty. Failure to succeed in some area of their lives may be complicated by misconceptions or ignorance or unhealthy interactions. As a reading specialist, I witness this in low-performing students. They often see themselves as "stupid" or "not smart" or "incapable" of learning and performing. They quit. I consider it my job to jump-start the mechanism, the belief system about their ability to learn. One of my goals, that is not an academic performance expectation, is to help my students believe in their own-selves and in their in-born abilities.

For an example of how this can work backwards for a person, I will use a personal example from my family. I am purposely avoiding identifying my child's name in this  blog writing for their own right to privacy. 

One of my own children had an undiagnosed condition. Something was different about the way my child attended to instruction. It was apparent even in kindergarten. By third grade my child didn't want to go to school and was withdrawing socially. My child's unhappiness came out in a social withdrawing, an isolating from others, and in a few negative behaviors.  Children often do this. They act out their pain and their perceived feelings of  being "less-than" other people. I noticed this in my child. I began asking myself some questions. What is going on? Is it something weird? Is it an outward influence or is it something emotional? The teacher seemed to dismiss my child as "difficult," " unwilling to do the work." She seemed to imply an unwillingness in attitude on my child's part. I wondered what was her and what was my child? I am a teacher, I have never wanted to be a parent who causes trouble or makes mountains out of molehills. I've had my share of angry parents and it's no fun, especially when you are already stressed with the work load. 

My child's frustration, as well as my observation of increasing behaviors, got my attention. I decided to involve myself. I knew I must support my child. A parent must advocate for their children. I wanted to see first-hand my child's classroom environment and the comfort-zone tone of the classroom management combined with compliance-noncompliance attitudes of my child with the teacher. To do this, I requested to become a parent volunteer once a week in my child's classroom. There was immediate resistance on the teacher's part. Later, a complaint would be made by the teacher to the principal about a younger sibling who accompanied me on my volunteer days even though there was no misbehavior or distraction by the younger child. The teacher and I formulated a plan and I would work with my child and two other students at a side table in the classroom, eventually we would move out of sight into the school library. I sensed that not all was going well. I was cognizant that the teacher might feel insecure since it is my profession as well.

On the other side of the coin, from a teacher's perspective, it is frustrating to try and teach a child who has an undiagnosed learning challenge or physical disability when you are busy teaching a room full of students. It can be like trying to put a round peg in a square hole. The fit is not exact. I've been on both sides of the fence with this one. Teachers can make wrong assumptions and deliver pronouncements that are ill-advised, destructive to a child's self-image, block the child's ability to access learning, and leave lasting ramifications. It is a vicious cycle, a dance, one of unending struggle between the teacher, child, and parent unless a better way is attained. Learning and knowing the child's needs is one reason school Student Study Teams recommend a parent's gathering of background information in regards to the child's mental and physical health. 

One day as I walked into the room to do my weekly time of volunteering, the very moment I stepped inside the room, my child's teacher grabbed a paper off her desk. It was one of my child's papers, a lengthy front and back writing. "This work is not acceptable! It's sloppy and not very nice. It's been re-written two times and it's still not right! [Your child's] a smart [child} but [they] don't want to do it. I don't know what's wrong with [your child]. Do it again!  [Your child] can't come back in this class until it's done right." She spoke to me in anger, slapping the paper with the back of her hand and then handing it to me. Returning to teach her students, my child and I were dismissed. I didn't say anything, it felt like I was a little kid again, and that it was me being shamed in front of the class. I was dumbfounded. How could she speak this way about a student, any student, in front of the other students? It was a shaming, a public humiliation. My child was being scolded, shamed, ridiculed, and I, as his parent, was not being respected either or his teacher would have spoken differently to me. Some things should be done in private or at least to the side in a hushed voice. It was surprising to me that she would cross that line. I am sure the teacher was reacting to a student that she felt was purposely avoiding or resisting doing the assignment. However, a public shaming is high on the list of hurtful things adults do to children. It can leave a lasting imprint. (I cringe when I hear people raising their voices as they berate children in public places. It happens all too often.)

My child and I went home. Enough of this! I helped my child write the story for the third time, a defeated little child. The hurt in my heart boiled out and the fear about what was going on was scary. My tears were brimming but I tried to be stoic and kind, to help my child do it nicely, to not speak angrily about the teacher. When we later turned in the paper, I was angry but bit my tongue, civil but confused. As a parent, I was feeling many emotions. How could she treat my child this way? How unprofessional. How damaging. What can I do? Is there something wrong with my child? There was more to this than I understood. I knew my child's kind heart. But, I also was aware that parent only sees one side of the equation. And, I knew my child was desperately unhappy. It was obvious the teacher was frustrated with my child, hence the anger. I wondered what the trigger was and whether she was right about my child not wanting to do the work. Regardless, it is never acceptable to shame a child. I knew she was out of order in her actions and reactions. I also knew something else that is more true than not, if you don't advocate for your child no one else will.  I decided to take it up a level. My child's mental health was suffering.

The next day I set up an appointment with the principal to request my child be removed out of that classroom and into another one. I'm not a trouble maker and hesitant, so it was hard for me speak up, but I knew I must. A Student Study Team meeting was scheduled. The teacher, school psychologist, and a couple of other staff members met with me. Inside of me I felt defensive, not used to being on this side of the table. My fears didn't show as we proceeded through the SST steps by listing the positives first, negatives second, and lastly, a workable solution. I agreed to take my child to the doctor to check for hearing and the possibility of an attention deficit disorder. Which I did. My child's health checked out fine. My request fpr a class change was denied. My child remained in the same class for the rest of the year. I was told that it was too late in the year to change classes.

An observant adult will notice if a child seems less engaged in the process of listening and learning. In kindergarten I observed my child looking around the room while all the other children were attentive.  At church during story time, I observed my child being inattentive, looking around, not watching the person who was telling the story, not even looking at the visuals. It had bothered me. Most children want to see and hear a story.  Also, as a toddler, my child's oral development was delayed, slow to articulate sentences, but I had noticed this same trait in other siblings as well. I could tell my child was smart by the things my child would tell me and their accumulated base of knowledge. It wasn't showing up in my child's school experience, the grades were satisfactory but not reflective of the ability. The midterm report would be low and then my child would engage. I believe, in part, that my child could not perform well because my child was unaware of the expected requirements until the first report, when the concrete information was available. It was tied to my child's undiagnosed physical limitation and condition which we didn't know about at the time.


I started to search for answers. I wanted to know what my child was thinking in relationship to school and home, if I could get any clues as to what was going on from my child's perspective. I asked a question. "If you could change one thing about the way things are here in our home, what would you change to make it better for you?"  My child thought a moment, and then looked up at me with those expressive dark brown eyes, "I want to be left alone, where it's quiet. I'd like to have my own room where nobody will bother me." That was not what I was expecting. The answer surprised me. My child was sharing a room out of necessity. I thought over my child's answer. It made sense to me. It also told me to pay more attention to my child and family dynamics.

My child slogged through third, fourth, fifth, and into the middle of sixth grade, never performing as well as hoped and never particularly happy either. In my child's sixth grade year the answer to my questions and my child's issue came to the fore-front.

For some reason unbeknownst to me, an educational paper was sitting on a stack of mail and on the diningroom table. I didn't know why the paper was there or where it came from. I picked it up and began to read. It documented a list of behaviors that accompany something called Central Auditory Processing Disorder (CAPD). A doctor's name was on the heading but it was a reprint. There were about twenty items on the list. A bell began to ring. The symptoms sounded all too familiar. I read it again, making a mental check for each behavior that I had noticed in my child. They were descriptive of my child in specific educational terms. Wow. I couldn't believe it. I began to feel the beginnings of hope

Time to do my homework. From there I went to the Speech and Hearing teacher at the school where I taught. She loaned me a file on CAPD. I read it through. The similarities to my child were astonishing. I asked her for an audiologist recommendation. From there, I took my child to an audiologist for CAPD testing. The test checked for two things: acuity (hearing ability), and for the way sound is perceived. It took more than one session of testing. From another room, the audiologist would speak words into a microphone which my child would hear in a headset and would respond back, telling her what was heard. In other parts, my child would have to select words to follow the audiologist's directions. My child could not see her speak. Later the audiologist met with me to explain the results of the testing. These were printed out on a several sheets. The doctor explained that my child's hearing acuity was in the normal range. The problem stemmed from a distorting of sound as it traveled from ear to brain. The brain was not interpreting the sounds correctly.  The interpretation of the words being said was not clear. Sounds were confusing especially in certain situations. Yes, my child had CAPD, particularly in the left ear. The audiologist explained that background noises make it very difficult for a person with CAPD to interpret sounds, and that CAPD makes them sensitive to loud noises (remember my comment about my child wanting to left alone). We were given some exercises for my child to practice and a note for his teacher so my child's assignments could be modified as needed. My child would need to be placed at the front of the class to lip read while the teacher talked. It was encouraged, to have a classmate take notes during lectures, and to  have my child's teachers(s) write assignments and key points on the front board for important content, assignments and expectations. Lastly, she recommended that I have my child participate in a Speech and Language clinic at the local university since the inner ear still develops and is elastic into teenage years. The exercises could help it form correctly. We acted on her recommendations.

I told my child that I had the results from the audiologist. "You hear okay but the testing shows that you have CAPD. Your brain is not interpreting the sounds it hears correctly." Immediately my child responded in amazement, "I'm not stupid after all!" My child had internalized a wrong message when in reality it was a physical condition that made my child unable to discern what others were saying. This is what was making it difficult to understand some of what the teachers were teaching. My child's relief in gaining this knowledge was instantaneous. It all made sense. I thought back to when my child felt like a nobody and was so desperately unhappy. It was unfortunate. My child hadn't known what was wrong, that instruction was indiscernible, and my child's teacher had concluded it was laziness or other.  I had known my child was smart enough possibly even bright, but I didn't know why my child was angry. How many children and adults think they're stupid when they can't access learning or achieve academically when in actuality the problem is a physical condition? More than we probably realize.

During my child's growing up years, my special time with my this child was while I was cooking dinner. My child would stand in the kitchen and talk to me, telling me things or asking me questions. I noticed that when my child's back was to me there would be misinterpreting of my comments.  Now I understood the "why." On through my child's high school years, my child would have to advocate for personal accomodations in the classroom. I don't know how much my child did so but I know it did happen. My child never hid behind a diagnosis nor wanted a label, so we didn't do a 409 for special accommodations. It did cause some misunderstandings when my child misinterpreted information via the school intercom or during instruction. At least my child knows about the CAPD. It helps.

As I look back, I remember reading that paper with the CAPD information. I believe it was a God-thing that it showed up. I do. I don't know why I received it nor how it got there. All I know is that it opened the door for my child. We hurt when our children hurt. It was hard to see my child struggle.  After the diagnosis, my child became more relaxed. My child's Sunday School teacher asked me "What's happened with [your child]?" When I told him about the CAPD diagnosis, he said, "I've noticed such a difference in [your child], [your child] seems much happier and contributes more." It is amazing what knowing the truth can do for a person.

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