Is safe at school an impossible dream?

As a Nation we mourned the tragedy of children killed in their elementary school. We gathered together in prayer, in sorrow, and parents across the nation wondered ‘Are our children safe in school?’ There was a rally cry for improved security measures, requests for bullet proof windows, lock-down drills, and armed guards in schools.  School Districts across the Nation held public meeting to hear concerns. My children’s school district was one of them. As I sat at that meeting, tears in my eyes, with the absolute knowledge that MY SON is not safe at school. Not because of people with guns, but because he has Type 1 Diabetes. I worry everyday-will he make it home-safe, stable, alive?

Does this fear come from the diagnosis of Type 1 diabetes? No – it comes from 3 years of ‘mistakes’ in regards to his medical care in school–one mistake in particular–which puts his life at risk–the same mistake–over and over again–getting insulin for food and not getting the food insulin was meant to cover.

Each time, I met the school-discussed plans to ensure “this won’t happen again” and then–it happens again! At my request- a certified diabetes educator has come to the school to teach the staff about diabetes. At my request–a written plan was drawn up–detailing the care my son NEEDS to be safe at school. My son has a medical plan written by his health care team, a 504 plan, a diabetes action plan. All of them-specific, basic, and easy to understand. BUT–it happened again!

Each time–the first question asked is “what did your son do? Why didn’t he speak up?” My response this time, Thursday March 28th-“he didn’t speak up because the staff at this school has taught him NOT to.”

At 7 years old he was sent to the nurses office for insulin by the time he got back to class he was told the treats were all put away–by the very teacher who sent him to the nurse for insulin. He tried to tell the teacher–but I had insulin–but wasn’t listened too. At age 8–received insulin at the nurses office before lunch. Part of that dose included a yogurt bar from the cafeteria–when he went to get it –he was told sit down–again he tried to tell the teacher—again he wasn’t listened to. Both times his blood glucose level dropped-low, dangerously low.

On Thursday, March 28, 2013, now age 9-he received insulin for a classroom snack. He was sent by his teacher, with the snack to the nurses office, so the nurse could tell me the carbs over the phone and insulin  dosed accordingly. So far, so good. Back to the classroom-he put the snacks on the desk, as was usual procedure. Half the class had already consumed theirs and were moving on to the math lesson. He waited, and waited–but was never given the snack. Due to past experiences–he did not speak up–he always got shot down before–why would this time be different? Thankfully–he was smart enough to know–when you get insulin–you gotta eat–so he stuffed down some peanut butter crackers from his diabetes kit and joined the math class.

He called me at lunch,  normal procedure, so I can tell him his insulin dose for lunch. I ask “hey how was the birthday snack?” and in a crackly, about to cry voice he said “I didn’t get it.”

“Did you get insulin for it?” I ask, “Yes, but I didn’t get the snack.”  “Put the nurse on the phone” I said.  I hear in the back round–” tell her I’ll call her back.”  “Frankie–tell her I need to speak with her NOW.” I want to scream at the top of my lungs–what the HELL is going on in that school?” but I refrain, and say “what happened?” The reply “This is the first I’ve heard of it–I’ll call you back.”

The call back is basically a ‘mistakes will happen, Frankie didn’t say anything’ and I sternly reply “He is 9. Someone is to make sure he GETS the food after insulin.” More ‘mistakes will happen, you have to understand that, etc, etc.’ My reply–“mistakes will happen–THIS mistake is time and time again AND THIS MISTAKE can put him in the hospital or worse.”

The kicker is the school’s first response is to ask me WHAT MY CHILD DID! Like this is his fault. It get’s worse. This time–my kid gets pulled aside–in front of his whole class –and questioned about it. “Why didn’t you say anything? What do you think happened? Aren’t we a team?” His WHOLE class thinks HE is in trouble. HE thinks he is in trouble. My brave kid holds back his tears until he gets off the bus, runs into my arms sobbing, “I’m in trouble cause I didn’t ask for the snack.”

What’s a parent to do? I am at my wits end. This disease SUCKS! School issues aside-THIS DISEASE SUCKS! My kid has to deal with 8-10 needle sticks to his finger, per day,  to check his glucose level , 5-8 injections of insulin, per day, to stay alive, blood tests, doctors visits, and up and down glucose levels that cause blurry vision, inability to think straight, lethargy, headaches and more. He handles it-better than most adults would. As a family–we try to stay positive about this crazy disease, we work to raise awareness, and we can’t seem to manage getting through to his own school. A ‘talk’ like that messes with his head–puts the idea that this ‘mistake’ was his fault, his problem, and as Frankie said “school thinks diabetes is a pain.”

I’m upset, frustrated, angry. When my kids make mistakes–I make sure they admit to them, make amends, drill into their heads not to do it again. I am trying to raise respectful, decent little humans. In a school full of Character Education and Anti-Bullying campaigns–when will they stop putting their mistakes on my kid, start admiting to them, start getting it right? When will they stop bullying my kid and start following his care plan?

I contacted the Principal, The District Superintendent. There will be meetings, new plans, and a lot of talk-and nothing will change.It’s been 3 years of meetings, new plans, and a lot of talk. I now have to put ALL the care in the hands of my son. He will be calling me himself, from the classroom, for every insulin shot, and to give me his BG readings. He is losing his childhood–because of absolute carelessness of the very adults I have to entrust him to everyday.

I want a rally cry–for all kids with diabetes who struggle in school! I know many–not just in my kid’s school district –but ALL over New York State. I want our educators to get educated about kids with diabetes! Join me! Write your School Boards, your Superintendents, Principals, Senators, Congress, the Govenor. Certified Diabetes Educators are available to ALL schools in New York State– FREE OF CHARGE through the New York State Health Department. Write, keep writing, and write some more—to get this education in ALL elementary schools in N.Y.S.

Join our family in making sure SAFE AT SCHOOL is NOT an impossible dream for kids with diabetes.

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Thanks Immediate Medical Care of CNY…

I’m one of the lucky ones. I have a Boss that understands Type 1 diabetes.

I work at a local urgent care center-Immediate Medical Care of CNY.IMC storefront The very place I took my son on August 23, 2010. He was very sick, throwing up, dizzy, just feeling lousy. I thought he had the flu or Lyme Disease. I was diabetes clueless! In the room walks my boss, a doctor and the owner of the urgent care center. My boss knew right off what was going on with my son, ran the tests and had the unfortunate job of telling my 6 year old that he had Type 1 diabetes. I won’t ever forget the kindness he showed my son that day. The extra time he took to make calls to get him seen by a specialist ASAP. I will never forget the look on his face when he told me-straight up-what this diagnosis means. I will never forget that he sat with me-as I cried, freaked out, and blurted all my worries and fears like he was my social worker. I won’t forget–that the first night of giving insulin shots -I froze and couldn’t do it. I called my boss and without hesitation he said “Come on over” and with patience showed me how to do it–encouraged me–told me “You got this-you CAN do it.”

We are now about 3 years in to life with diabetes. I can’t count how many days I have been late to work because of a low BG’s, days I had to leave work, or missed work altogether to take care of my son. Not easy on my boss–or my co-workers, but as I said-I’m lucky–to work with people who get that diabetes is a  roller coaster–and support me by saying “your child comes first.”

I’ve heard the stories from other T1D parents-that have lost their jobs due to too much time missed due to caring for their T1D child. It breaks my heart and makes me think–I don’t say ‘Thank You’ enough to my awesome boss and fabulous co-workers. So here it is…a HUGE and HEARTFELT THANK YOU! I know how good I’ve got it, and I don’t say it enough…

Thanks Immediate Medical Care of CNY!