Since we have been on the first theme. I began to think about that back to school experience. Type 1 diabetic child  in school for the first time. The thought that I had to leave my child with school personnel. Let me paint the picture.

We were in a charter school for the better education. For those of you not in our area at the time that school was rate one of the top in the state. Quincy needed the challenge (or he took things apart and did experiments to learn about things!!) that this school provided. The caveat, they did not take kids they did not want. So those kids on 504 or IEP or ILPs did not make it into the school. But once you were there they could not kick you out. The up side to this there was a full time RN at the school. No school aid that took care of my son.  I thought all was going to be well. Because as an NP the next best thing was a nurse. I felt better about him going to school.

However, the school isolated him, the nurse fought me on what the orders were for his shots, she did not even understand what Type 1 diabetes was and what they needed. She openly admitted to not understanding and was trying to learn. I had teachers aids tell me they did not have time in the instruction to deal with type 1 diabetes!

The fortunate thing was Quincy was oblivious to this. He was always excited about school. He did have issues with his sugars. And more than once he did not get a shot the nurse should have given him. My anxiety increased about leaving him anywhere. I could not trust the nurse to care for my kiddo how was anyone going to care for him the way I could.

In the end and after writing my own 504 plan but not getting it to the teachers (the school just needed it on file for my son incase the state looked into it!) We moved schools.

The new school was what we should have had in the beginning. Diabetic care was always first.

Type 1 always calls for a parent to advocate. But how do you do that without guidance of what is wrong. Places I that would have helped me was at the very least my diabetic educator (but I never asked for what I thought was normal)!

This is another book for another day. Type 1 diabetes and the basics for school days. There are so many resources out there for this and I think new diabetic parents need to be on top of these resources. Type 1 Diabetes and the specifics of your kiddo.

What was your Type 1 back to school experience?

Do you remember that day of your kid being diagnosed with Type 1 Diabetes? Overwhelming, scared, not sure how to keep your kid alive tomorrow! I remember. It was an evening and we went to urgent care because he did not feel good and he was urinating all the time. The NP that saw us happened to be one of my old professors from college. She told me we needed to go to the ER because he has Diabetes. I sucked up my emotions to drive to the emergency room. I replayed in my mind the last few months…what did I miss? I am a nurse pratitioner I sould have seen it coming but why didn’t I? Those are haunting questions that I could never answer. And sometimes we don’t have those answers.

When we got to the ER my husband showed up and I went to the bathroom and cried for what seemed like an hour. What no one knew is I saw patients each week in dialysis from not taking care of their diabetes, very ill sick patients. Type 1 and my child. No way. NOT ME!!! Then realizing I am now the parent how am I going to keep him alive and never go to dialysis.

The days that follow were a blur. From the educator to the nurses I never left my childs side. Now how am I going to go back to work and let someone else watch my child. I did not think I could take care of him well who else was going to help take care of him. While I was a mess, my son took it in stride. He did not like the shots (but who does) and he faced it like a soilder. He went about what he needed to do. He can educate anyone what is exactly occuring in his body than anyone around him incluiding me. With the weight of his diabetes and any little thing could kill him, training the nurse at the school even, trying to teach family, and trying to learn it as a parent made life in general overwhelming. No wonder it took 3 years to really go out and enjoy a date with my husband or have a sitter in charge of him. Type 1 can rule your life and the entire family. If you are on shots, meals have to be a certain times. If on a pumps, you are always adjusting the basal rates or sensitivities or ratios.

As I became more comfortable leaving Quincy with others it was only because I trusted him and trusted he knew his body. Not  because I had a good method to teach a sitter. Type 1 ruled my life every minute of every day. Now that he is a teenager I don’t worry about leaving him. I do have a consistent sitter, but more for my younger child than him (she does help him often). He watches my younger child more often than anyone else. No resources were avaible to help train the sitter for my son so we made one.

What I want to know is how other parents dealt with diagnosis day of Type 1 diabetes? What was that like? Where you able to keep normalcy or did your world suddenly get small? If it got small when did you open up and allow it to enlarge?

Type 1 Diabetes can overwhelm and rule your life until you feel you can rule it…when does that really occur though.