Continuing my discussion of Learning Disabilities

One of the most difficult aspects of dealing with learning disabilities is diagnosis. I found it exceedingly difficult to get my children properly diagnosed. My oldest, who suffers a profound executive functioning impairment, was dismissed by more than one “qualified” psychological tester because he could hide his disability very well in elementary school. As the head of pediatric neuropsychology at Allegheny General Hospital said to me “What is your problem lady? You kid is achieving at grade level.” My problem was that my child, who according to this man’s test should have had no trouble exceeding grade level, was struggling to achieve at grade level, in third grade. I took this five page report and showed it to my son’s teacher. I asked her, is this guy right? Am I being a mother who can’t be satisfied if my child isn’t getting straight A’s? I still remember her shaking her head and telling me no, that something was wrong, that my son was bright enough that his struggles were not within acceptable limits. This was the third time I had had my son tested. The first time was the summer between first and second grade when I tested my son through my local school district. The woman who tested my son was clearly annoyed with the fact that my child went to an independent school, but that I had the nerve to ask my school district (where I pay taxes) to test him. She made multiple comments about the inadequacy of my son’s school, and then gave me a report that said my son did not have a learning disability. When I read the report, I noticed that there were huge discrepancies in testing numbers, sometimes as high as 14 points, within particular areas, especially the visual non-verbal. I showed the test to a family friend, a retired school psychologist, and asked him if this was normal. He reviewed my son’s test and told me no, that something was going on and he suggested we retest him. He was able to tell me that, under my county’s Intermediary Unit’s guidelines, my son qualified for an auditory processing disorder on the test, despite the school district telling me he had no problems. My friend retested my son that December and found that he was just shy of a disability in executive functioning and that he had an auditory processing disorder. But this didn’t explain why my son wouldn’t read. I had him assessed by someone who teaches Orton-Gillingham, a method used to teach dyslexic people to compensate in reading, and he was not dyslexic. So when the opportunity came to test my child through Allegheny General Hospital, my friend said I should do it. He said that they would have access to all of the latest tests and tools to figure out this missing piece. Instead, I was dismissed by the head of the pediatric neuropsychology department as a pushy mother, and told that my son had a “slight developmental delay” and I should ignore it. Since my son’s teacher did not believe this, I began working with his grade level teachers to help him navigate his increasingly difficult workload. He struggled every day. Learning to show his math work, reading, and general organization increasingly became problematic. In middle school, he needed academic support to manage getting his finished homework turned in, to keep his books and supplies from getting lost, and to complete multi-step homework assignments. Because I did not have a solid psychological report to deal with, only some of his teachers stepped up to help him. The director of his school, while telling me all of the correct things, was failing to follow through on actions we agreed would help my son. Finally, in seventh grade, my son reached a point where he was crashing, both academically and emotionally. The daily message “you aren’t meeting expectations” had taken it’s toll. His standardized test scores dropped three stanines across the board, and his school called me in to tell me that “this just doesn’t happen. It isn’t possible that this is a true reflection of his capabilities.”
In the meantime, my middle child, also a boy, had begun struggling with reading. In second grade, his teacher asked me if I would allow him to go to reading support, even though he didn’t technically qualify. I said yes, and decided that my son should be tested. I took him to a different private psychologist. At the end of her assessment, she told me that “he might have an auditory processing disorder,” but she wasn’t sure and that I should have him tested for this. As I looked around to find someone to test him, the mother of one of my daughter’s classmates, who is a pediatrician, recommended The Watson Institute to me. I took my son there, where they were able to diagnosis him (correctly, as time has proven) as a compensated dyslexic. This meant that he tested above the threshold for dyslexia, but only because of the reading support he had been receiving.
My oldest son was finishing fifth grade at the time. I debated whether I should take him to The Watson Institute, since it was the first place that I had experienced any level of true competency and caring. I decided that my son had been though enough, that, since I was able to work with his school, that I should spare him that additional testing. This was the biggest mistake I have ever made in my life.
The damage done over the next two years is something that may never be fully undone. My son came to me in his seventh grade year, admitting to me one night that when he got to the end of a sentence, he didn’t know what it meant. This was an enormous admission by him, as before that he had always told me that “I just don’t like to read.” By the time I was able to get him tested by The Watson Institute and get those results, my son was suffering from clinical depression. In addition to having a profound executive functioning impairment, he compartmentalizes everything, so that when he reads, he chops a sentence, paragraph, and page apart, storing the information in different areas, unable to bring the parts back together to make sense without it being excruciatingly difficult for him. Finally, after four full psychological exams and other assessments, I had a true and working diagnosis for my son.
My son now has a 504 educational plan, which is working, although he struggles to understand how it works and what his role is in becoming his own advocate. He struggles with self esteem, and with his shame at having others know that he has learning disabilities. He struggles with believing he can achieve. He struggles with the anger he feels at the years of frustration and rejection when he couldn’t achieve on his own. And he struggles with finding ways to compensate for a disability that affects every part of his learning and his life, even his favorite sport, hockey, where he is often confused on the ice and must go to the end of the line in drills to watch others in order to be able to know what the drill is. Yet when people look at him, he “looks normal.” He “looks” like a kid who should have no trouble succeeding. I have had teachers and other parents, who do not understand LDs, tell me that he just needed to apply himself and that he was manipulating me. As someone with an LD, I knew that this was incorrect. I know what the struggles are of an LD person first hand, I know that no child chooses not to achieve. Can people be lazy about learning? Absolutely. LDs are something different entirely.
I share this with the hope that it will help you, as a writer, a parent, a friend, a fellow human being, to understand the impact of LDs on children. It is imperative that we, as a society, address LDs in order to enable every child to succeed in a world that is becoming increasingly competitive and difficult to navigate. As writers, we yearn to immerse ourselves in the experience of others, whether we write fiction or nonfiction. We must move forward with an understanding of the increasing incidence of LDs and with a clear appreciation of how we treat LDs in our writing.

Best Writing Wishes,

Sabrina

4 thoughts on “Continuing my discussion of Learning Disabilities

  1. Sabrina, this post encourages me and helps stretch my perspective into one that I do not completely get yet. I tutor a student, and have tutored her since she was in fifth grade, and she’s going into her senior year now. With her, I have no idea whether she’s being lazy (because her mom will do things for her if she finds them “too hard,” including laying out her clothes in the morning), or whether she has a learning disability. She likes reading as long as it’s a short creepy mystery novel. But she won’t or can’t read articles and books at her age level, extract ideas, and then synthesize them into a paper. When I try to help her write, it’s like she glazes over and doesn’t even try. I guess the best thing would be for her to be tested, which she may have had done several years ago with inconclusive results. But like I said, I don’t know whether she’s just being lazy or needs more specialized help than I can give her. I know you probably can’t answer that, not knowing her, but I just wanted you to know your post has helped me re-up my watchfulness for signs of an LD when I start tutoring her again this fall. If you have any advice on what I should watch for, I’d welcome it.

    • Thanks for sharing this Sarah. It is a very normal reaction for LD kids (and adults) to “shut down” even before they assess whether they can manage a situation on their own, as soon as they are presented with it. I know I still do it anytime I have to do math, and it’s really a kind of physical reaction, a feeling I have in my brain that isn’t a headache but just this kind of tightening, as if I am retracting into myself. I’ve become aware of this over the years, and found myself even doing it this past year when I had to help my second grader with her math (sad, I know).
      My psychologist friend who tested my son the second time he was tested told me never to assume a child is lazy, and also never to assume something is behavioral without checking to see if there could be a physical reason for it. This, in my experience, has turned out to be really good advice. I am a firm believer that no child fails to achieve because they are lazy. They may be bored, or be angry and think they are punishing someone else, or else they simply don’t know how. No one enjoys failure, but LD kids often cope with it by becoming the class clown and then, failing that, the disengaged child who says school is stupid, or that being smart isn’t cool. My oldest child went through both of these stages, after being a young child who was an immersion learner, needing to discover everything possible about any topic that lit his fire, from Batman to the American Revolution. He still doesn’t embrace learning, and I often wonder if I will ever be able to restore that for him.
      So, I think it’s great that you are asking these questions about this girl. It takes a lot of loving, patient, involved adults to address LDs, or even just learning weaknesses, especially because they are so damaging to a child’s self esteem. I am grateful everyday for the teachers, psychologists, tutors, and school administrators who have given their time and talents to help my child reach his full potential. Not all parents are open to hearing “there’s something wrong with your child,” but I think it’s the most important gift we can give our children to address their difficulties and help them rise above them. And I’m not sure how we, as a society, decide this is the line where a child qualifies for support. I think that there are a lot of kids who, just from a developmental standpoint, may need extra support in a particular subject or at a particular time in their growth.
      I recommend the National Center for Learning Disabilities as a site that offers a lot of information about different LDs and how they should be addressed. There’s a link to their website on my site, and you can find them on twitter, as well.
      I hope this was helpful, and thanks again for reading and sharing!

    • Another idea, Sarah, is that if she is able to verbalize responses that she isn’t able to translate onto paper, she may have executive functioning issues. One coping mechanism for these kids can be to use a program like Dragon Dictation, to help them express their ideas verbally, and then they can go back and edit them. If she is unable to extract ideas from a comprehension standpoint, that could be resulting from executive functioning issues, compartmentilization of information, or dyslexia, although she would probably have been diagnosed for dyslexia by seventh grade if she had it. I don’t know of anything else to look for, but there may be something else. There can also be issues with reading that are physical where the eye is unable to track lines properly, but this doesn’t sound like the kind of problem she is having. I’m sure you can find out more on the NCLD website though. Regards,
      Sabrina

  2. Sabrina, you’ve been extremely helpful. I will look at the website. I’m not a LD-specific tutor, but there has always been the question of whether or not my student is LD. So knowing what the experience is like from someone with an LD & with an LD kid, plus knowing where to look to teach myself more about LDs, is inspiring. Thanks for all your words and for writing so candidly.

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