My name is Elle Shaheen. I am 16 years old, and I live with type one diabetes.
Like most juniors in high school, I am preparing to take the SATs. I work hard in school, and just like many of my classmates, have hopes and dreams of attending college. Taking the SATs is a necessary next step in the process. So imagine my surprise when I learned how the College Board (the administrators of the SAT exams) handle students like me: Because I may need to test my blood sugars during the exam, I must complete a process for “special accommodations” and consequently will be taking the test without other students in the room.
I hate the idea that I need any “special” accommodations and would much prefer to be able to take the exam like everyone else, so having to provide a “clear statement of my disability” is frustrating. I try hard not to think of myself as “disabled,” but instead acknowledge that I have some challenges that demand attention. Apparently, the College Board would also like my medical records complete with a “summary of assessment procedures used to” diagnose me and a list of “symptoms and evaluation results that support” my diagnosis. I can provide this very easily. I was diagnosed with type one diabetes on November 27, 2007 and have over 23,350 finger sticks to prove it not to mention years of lab work.
Type one is an autoimmune disease that prevents my body from producing any insulin. We all need insulin to survive. Insulin turns food into energy and prevents our organs from being destroyed by too much sugar in the blood. The problem for me and the millions of people living with type one is that too little insulin can kill me, and too much insulin can kill me, so I have to constantly monitor myself to make sure that my blood sugars are in a healthy range. Low blood sugars can cause seizures, and high blood sugars can lead to coma, and over the long-term, can cause organ damage.
To stay healthy, I have to prick my fingers 8-10 times a day to test my blood sugar and take 6-10 shots of insulin every day. Every time I eat, I have to take a shot and every time I participate in any sort of physical activity I have to test my blood sugar, too. Type one is a chronic condition so I never get a break. Things that most people can do automatically without much thought take many extra steps for me. Getting ready for a dance class or preparing to take a test require careful preparation and the unpredictable nature of diabetes means that I can do everything right and still experience a dangerous high or low blood sugar.
I am lucky because I have extra help in keeping my blood sugars in check. I regularly use my blood sugar meter, wear a continuous glucose monitor, and I have a diabetes-alert dog named Coach who is trained to detect when my blood sugars go out of range. The meter, monitor and Coach go everywhere with me. Coach is such a regular part of my school routine that they take his class picture every year he will even be included in the yearbook this year!
Thankfully I have this help because diabetes throws lots of curve balls. Just being nervous with adrenaline flowing can cause my blood sugars to go high and something as simple as losing my appetite before lunch can cause my blood sugar to drop. I have a feeling I could experience either of those scenarios could happen as I head in to take the SATs. Thankfully, I’ve spent the better part of the last seven years working hard to make sure that I can handle those situations, and my medic-alert dog is a big part of this equation.
So perhaps the request that is most disheartening to me is the one requiring that I prove the “medical necessity” of my medic-alert dog. Coach is trained to detect changes in my blood sugar, and I have countless examples of the times he’s detected those changes faster than any medical device I’ve tried. He has had over 2,000 hours of training and we are a licensed service team, certified under ADA standards. He is incredibly smart, but I don’t think he will be giving me the answers to questions on the SATs. That said he will be helping to make sure that I am as healthy as possible when completing what could be a life-changing exam. Of course, I only want to put my best foot forward.
To the College Board, the year is 2015 and young people across this country and around the world are taking the SATs with challenges, life experiences and diagnoses that are positively impacted by new ways of trying to stay healthy from monitors to medications to apps and yes even service dogs. Rather than insisting that I prove the medical necessity of my service dog, how about working to design a test that is a measurement of what we are capable of out in the world?
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