Parent Advocate, Tracey Mayer will be offering up her writings to The Concussion Blog as a resource to the readers, especially the parents out there. As time allows she (and possibly her son Drew) will be submitting posts for you to read. I truly hope that everyone gets a chance to read about concussions from yet another perspective. Thank you Tracey!
Drew was accepted into his first college of choice, Illinois State University - the only school he wanted to apply to. This is wonderful news. We were all holding our breath with anticipation, after all, Drew’s freshman and sophomore year transcripts held quite a few C’s.
I called our school psychologist, hoping for some guidance on how to approach the college in regard to accommodations for Drew. Unfortunately, she more or less told me that we are on our own, and I will have to contact the disabilities office at ISU and find out what services they offer. I can’t say that I am surprised to hear that, although it is disappointing.
I am going to make that call tomorrow, and there are so many thoughts in my head. How do I approach this? How do I organize the information so it’s as clear as possible? Do I even have the right or enough information? Are they even going to understand what I’m talking about? Or will they care? College is very different from high school, so is extra time on tests going to be what he needs? Will he need breaks on tests, tutoring, etc.? Who will help us determine this? So begins another search for answers and based upon my previous work, you can see where I might be a bit concerned.
When I applied for extended time on the ACT for Drew, this is what the letter from the College Board said – “Please provide a detailed description of your disability, including the frequency, duration and intensity of your CURRENT symptoms. Detailed information from your teachers would be helpful. It would be helpful to provide an updated neurological evaluation. For medical disabilities, the documentation should show that a comprehensive assessment was conducted to arrive at the diagnosis and to determine the need for the requested accommodations(s). Documentation should include a history, course of illness, summary of assessment procedures and evaluation instruments used to make the diagnosis, a narrative summary of the evaluation results, treatment and medication (past and current) as well as a rationale for each accommodation recommended by the evaluator. A qualitative description of how your disability impacts your academic functioning, specifically its functional impact on your ability to take College Board tests, should be included. Please include detailed descriptions from your teachers regarding your need for, consistent use of, and benefit from accommodations in school may prove helpful. Please provide a written report and standard/scaled scores for all academic and cognitive subtests.” I have a feeling the college will request something of the same nature, but it would help if I had something from a doctor.
Drew will be seeing his neurologist on Tuesday, but since I had to write the letter I needed from her to submit with the ACT application requesting additional time, I am not expecting her to offer much to the college. I guess if I tell her exactly what I need like I did last time, and perhaps write the letter again for her to copy on her letterhead we might have something to work with, although I don’t even know what we should be asking for at this point.
The neuropsychologist who tested Drew after his injury told me she will not give me anything that states that the results of the neurocognitive testing performed on Drew may not be accurate since the testing is not written for concussed patients, and there are too many variables. She outright said no, she will not do anything for us.
I have since learned of another pediatric neuropsychologist practice that appears to really fight on their patient’s behalf; so perhaps if I take Drew to see them they might be able to help us. Of course, that would possibly require him having to go through extensive testing, which begs the question – what tests, and are they going to be consistent with his problems or end up being the same as the first time? In the first testing the results didn’t show any significant deficiencies because it was not the right type of testing – utterly confusing. It’s like going to the doctor complaining of a sore right ankle and having him or her x-ray your left shoulder and say everything looks fine. How do I ask a doctor to test him based on the fact that intense focusing triggers migraines, particularly in math and science? I also need to include the fact that he still forgets some things – we don’t see a specific pattern – sometimes he cannot remember the simplest of things at all: like what he ate for lunch or a kid’s name that he should know.
Drew has taken medicine, mainly to help him focus which helps, but we are trying to keep him off the meds because it shuts him down and makes him feel sick. He now receives 50% more time on tests, which reduces the stress and helps prevent the headaches, but he doesn’t always need it –it depends on the class and the test. So, we cannot show the difference between the test results with extra time and no extra time. Or the tests with meds versus no meds – meds…..no meds…..regular time……extra time…….all of the above…..none of the above……is your head spinning yet? Mine is.
One step at a time. First call to ISU disabilities office tomorrow. Deep breath. I’ll keep you posted.