Problem: In September of 2014, my five year old son was diagnosed with Type 1 diabetes.
Problem: Although my wife and I work in the medical field, we had no idea how complex diabetes is.
Huge Problem: At the time of his diagnosis, my son was in kindergarten in the Los Angeles Unified School District (LAUSD).
The LAUSD is not properly designed to, nor can it handle children with diabetes. We learned this the hard way when the district nursing office called to tell us that Type 1 diabetes does not require full time nursing care at school. Not even for a very young child. With the realization that our school district was treating Type 1 diabetes like a minor scratch, I knew our situation was going to get nothing but worse.
So when my son began kindergarten, either my wife or I sat in class with him 5 days a week, the entire day, to check his blood sugar, administer insulin, and all of the other things that go along with diabetes management. The school he attended, although one of the better schools within the LAUSD, had the funds to have a nurse on campus only one day a week. Once a week?! What good did that do us?
Within six weeks of diagnosis, my son was on an insulin pump, but it took the school at least three months to send nurses everyday to help our son with his insulin. And then, the best they could do was to send a different person for recess and lunch to deliver insulin. Since my son knew how to use his pump to deliver a bolus, the nursing service was essentially useless.
The only saving grace was that his teachers were very supportive of us, and went out of their way to help in any way they could. The assistant teacher provided primary care, and in no way was she required to do what she did. She supervised my son as he checked his blood sugar. She would always walk him to the health office, and she always stayed with him when he was hypoglycemic. Those two teachers are the only reason he completed kindergarten at this school.
We knew that first grade was going to present us with another problem because after kindergarten an assistant teacher is not present. What teacher is willing to have his/her class constantly interrupted due to a diabetes related issue? What teacher wants the responsibility of checking a blood sugar, correcting a low or high, and being in constant communication with us? We were desperate for a better solution, and the only one we could think of –private school- came with a heavy price. Then again, you can’t put a price tag on your child’s life, right?
My son was accepted into the same private school that I’d gone to as a kid, which made my wife and me very happy. The school has a full time registered nurse all day, every day, in addition to a licensed vocational nurse to assist with any medical needs. The nurse has many years of experience, and has been employed by the school for ten years. She has had at least one diabetic child every year, and is well versed in Type 1 diabetes management. The only obstacle facing us was how to pay for school. Thankfully, the school offered us a very generous financial aid package.
So far, our plan of removing our son from the public school system has paid off in dividends. The level of care he is receiving is outstanding, and the nurses are aware that even with all of their knowledge, they don’t know everything. They never hesitate to ask what we think, or what we want them to do. We have a wonderful relationship with them, and they treat my son as if he were their own child. He is happy, healthy, and his last A1c check was 5.7%! The nursing staff is a huge reason why.
Though we are glad he is in a much better environment to help ensure his safety, and at a far superior school, we are also upset that we felt obligated to make this change. Because our son has diabetes, the public school system failed him, and left us with no other choice but to place him in a private school.
It is extremely disheartening to know that because my son no longer falls into the “normal box” that the public school system was designed for, he is set up for nothing but problems. The public schools are obligated by law to provide a free and appropriate public education (FAPE). When diabetes is part of the equation, it’s not just the classroom component that should be included. If a child’s safety can’t be guaranteed, everything else goes by the wayside. The school system needs to reconsider the meaning of FAPE, and realize its complexities. Until then, children who don’t fit the mold (and their families) may be stuck in impossible situations. We’ve been lucky so far. We found a way out. Not everyone has that fortune, and no one should need to.