As a parent of a T1D-I look to other parents wearing the same shoes as me for answers and guidance about various questions that come up while raising a diabetic child. This week, as I was searching for some feedback on insulin dosing, I came across several posts regarding children with diabetes and school. These posts always leave a pit in my stomach because we have been there-struggling to get a school to understand how precarious diabetes can be, how life altering it is to a diagnosed child, asking for help from the place our children spend most of their time.
I was especially moved by a post about a child who just wanted to call his school nurse-a simple request since there is a phone in the classroom for just this purpose and the child has done this before. The child wasn’t allowed to make that call. Another post-about a child reprimanded for leaving their blood glucose kit out on the desk–because the child wanted to get out to recess with all the other kids, and in a hurry to be like everyone else–left the kit out. If it had been a pencil, a book, a hat and gloves–would that child have been ‘in trouble?’ Both of these incidents left a child, who already deals with so much everyday–in tears. Hating school, hating diabetes, hating their life with diabetes. There has to be a better way.
So in that vein, Frankie and I post these letters. If you are a teacher, an administrator, school staff member–please know our family holds you in high regard. We know your jobs are the most difficult on the planet, and we know parents ask a lot of you. We just ask that you take 10 seconds before you react to a child with diabetes, or any child with special needs–to think about how difficult their life on this planet is–and see that they are trying–to be the same as everyone else while dealing with diseases, learning disabilities, and the like. Everyday-a kid with diabetes is thinking, injecting, testing blood with a needle to their finger–just to stay alive. They too, have the most difficult job on the planet–trying to stay alive while trying to just be a kid.
As a parent of a T1D I try to teach my son-respect adults, do what your teacher says-but I have to balance that with-BUT keep yourself safe-do whatever it takes to stay in the upright position. So please-take 10 seconds school staff–and think about the fact that respect should go both ways. A kid with diabetes KNOWS what they need-they will tell you if you listen.
I have type 1 diabetes. I am 9, (4, 6, 8, 17, ect) years old. Having diabetes stinks, but I try really hard to not be grumpy, tired, confused. Sometimes I can’t help it-because that’s what happens when my blood glucose goes wacky. I will have to mess up your class sometimes-because I will feel weird and need to eat or have a juice box or need to call the nurse. I don’t want to mess up your class-but I don’t want to pass out either. Diabetes stinks. I may have to miss school because of diabetes. Some kids think this is great–I hate it because it means I am sick-sometimes in the hospital. It is hard to make up all the stuff I missed–but I promise I will try. If I act weird, forget stuff, don’t pay attention–it might be my diabetes–so ask me to check my number before you tell me to pay attention–you might be saving my life.
My son has type 1 diabetes. His health care team has provided you with a medical plan to keep him safe in school. I have worked with the district to make a 504 plan-which outlines some adjustments to policies the school will have to make so my son can participate like all the other children. We have also made an action plan-which gives you guidelines on what to do if there is a diabetic emergency. Please take the time to read and learn all of these plans. I am available at any time to answer any questions or concerns.
I want you to know that sometimes diabetes causes my son to be up throughout the night trying to correct a high or low glucose level. The fluctuations of diabetes cause him to be extremely tired, lethargic, lose train of thought, blurry vision, and he has passed out at various times. My son is usually a happy-go-lucky child, likes to participate, and is very social. If he appears anything but these traits-please have him check his glucose level because that indicates a diabetic problem.
I don’t expect you to understand all the variables of diabetes. I just ask that you please read, know, and follow the plans set up for my son. Please remember that he has diabetes-don’t feed him without insulin and make sure he gets the food insulin was administered for.
I don’t want my son to get a ‘free pass’ because of his diabetes. I expect him to work hard, pay attention, do his best–I hold him to the same standards as I do my non-diabetic child–but please understand–that sometimes diabetes will prevent him from being able to fully participate.
We do our best with the help of his medical team to ‘regulate’ his diabetes but growth spurts, seasonal changes, excitement, stress, and much more–will cause his glucose levels to raise and lower. Diabetes is like a roller coaster.
One last thing, please don’t talk to me about ‘all the other diabetics’ who handled diabetes with ease that have passed through your doors. Please don’t tell me he would be better off on a pump, better off if ‘I let go a little’, better off if I fed him a certain diet. I get that you are trying to be helpful–but know that EVERY diabetic is different–in how they inject or infuse insulin, how their bodies react, how they handle diabetes emotionally. We have a GREAT health care team-who knows what is best for OUR child.
Thank you for all you do everyday for all the students.
Mom of a diabetic