I am the parent of a 7-year-old daughter who was diagnosed with Type 1 diabetes in August 2006. She attends public school in California. We have a nurse that is at her school one day a week, and she is a good nurse when she is able to come to the school. But she is not there every day, and even sometimes fails to come on days she is scheduled to be at the school. So for the last year, I went back and forth to school every day to provide my daughter’s care (treat lows and highs and provide insulin injections for food).
The booster club at my daughter’s school allotted money for a nurse’s aide (our nurse’s aid was in the process of obtaining her RN). The school nurse explained that the aide would not be allowed to provide insulin shots, because of “the rule” that only licensed medical staff could do so. I called the school every Wednesday to make sure the nurse was there because I had not been notified when she did not show up. I learned that in order for my daughter to remain safe at school, it was up to me to make sure it happened. Our school had three children with Type 1 diabetes, with a student body of over 700.
I have been unable to work and meet my child’s medical needs at the same time. We are experiencing financial pressure.
My daughter was blessed to have a wonderful first grade teacher who insisted that she be able to test her blood in class. This teacher determined that in order for my daughter to succeed she herself (the teacher) needed to be trained in caring for her. (If I could give an award for teacher of the year…it would be her!). She treated my daughter for lows. She called me on her personal cell phone when she was high.
We have a 504 Plan in place, done right after my daughter was diagnosed. We had no experience with this sort of plan, and the vice principal suggested that we keep it very basic. I now know that for the school year 2007-2008, more specific details will be required. I have requested that the district provide someone to give my daughter an insulin injection at lunchtime. I have been ignored. I will now provide a written request with copies of the request to the district heads.
Each day that my daughter attends school, I worry that she will not receive attention for her basic needs to survive. It is frustrating as a parent of a child with medical needs to have to constantly walk the line of not offending any staff member because their irritation at me could affect my child’s well-being. I need the staff members. I provide gifts, lunches, volunteer time to offset the time and care for my child. Most importantly, I am trying to provide as “normal” a childhood as possible for my daughter, and a normal childhood should include a safe school environment.
I have provided the school with “Care Kits” (for the classroom, the nurse’s office, an emergency kit (a grab and run kit) that include “What to do if ______________ happens,” glucometers, batteries, test strips, carbohydrates to treat lows, extra food, insulin, glucagon emergency kits, rubber gloves, anti-bacterial wipes, needle and strip depository, instructions on handling blood, extra water, and on and on.
I am hopeful that the K.C. v. O’Connell case will make schools accountable for managing the basic needs of children with diabetes. It is difficult for many to understand that each day is life and death for these kids.