Tuesday, January 13, 2009

Calling All PWD and Parents of PWD

I am working on a project and would love to get some input from you guys, the ones who live with Type 1 diabetes on a daily basis.

I want to know what you wish the school nurse knew. What would you like for them to know about you and your child? For those with diabetes what do you wish they knew about you?

I would also love to get some personal stories from parents or kids (or you guys who used to be kids with diabetes that are now adults with diabetes.) Do you have any good stories about your school nurse? Any bad ones?

Thanks for any input you can give me.

Please send me an email with your comments: pennylane5001@embarqmail.com

I may have more detailed questions in the future. Right now I'm looking for the direction I should take with my project.

Thanks for your help.

6 comments:

All 4 My Gals said...

Hi Penny, I just wanted to thank you for taking the time to stop by and offer your support for my daughter and me. It means a lot! I am so thankful that a close friend has a son w/type 1 and is a nurse. I feel like I hit the jackpot there. :) I just quit my part time job because there is no way I can leave Emery's care to someone else right now, if even just for a day. HUGS and I look forward to getting to know you and your family!

type1mom said...

Mine is short and quick, our school nurse is great! I have actually spent alot of time talking (I guess I do all the talking) through email with her about Maddison's patterns, changes and all the things us parents have to consider in a day. She is very educated now :)

I do wish school nurses knew that 200-300's, even higher can be "normal" and isn't necessarily a reason to come home from school. I also wish they understood why vomiting and low blood sugars can still mean DKA.

Araby62 (a.k.a. Kathy) said...

I wish there *were* a school nurse when I was a kid!. I attended Catholic grade and high schools, and in the early to mid-1980s I guess nurses were optional. Grade school wasn't too bad because my school was very small, and my teachers were very protective of me. I didn't have a meter I could take to school back then, but whenever I had trouble all I had to do was go to the principal's office. She wasn't a nurse but would call my parents right away whenever anything came up. I was dx'd in the middle of 7th grade, though, so that didn't last long.

The woman at my high school who called herself a "nurse" was really just a lunch mom. She wouldn't do anything for anyone, much less me. I didn't do my shots as frequently then (I took Lente in the mornings before school, which peaked around lunchtime, and Regular with breakfast), but the "nurse" would probably have thrown a fit if she knew I brought a syringe to school. Also, some of my teachers were weird about me having diabetes. Once I had a low before algebra (49 mg/dl) and I remember having to beg the teacher to leave class so I could test and eat something. She really didn't understand what the problem was, and she made it seem like a huge interruption of her day to accommodate me. My parents were also afraid to let me participate in any after-school activities or sports because I don't think they felt the staff was trustworthy to look out for me.

It's hard, but I wish there had been a safety net back then, at least someone trained enough to know when I needed help. I was always very self-sufficient, but I could have used the backup, especially if some teachers gave me trouble about treating highs/lows. My parents sacrificed a lot so that I wouldn't have as much trouble, but it should have been the schools' responsibility to help too. This is so important nowadays for anyone who needs to test and take insulin/eat frequently to maintain tight, good control, I didn't have the newer insulins so in a way I 'lucked out.'

k2 said...

Hey Penny - Happy New Year!
This might sound weird, but I don't even remember dealing with the school nurse in grade & Middle schools. I do remember that in 5th grade, my teacher made me eat my snack in the cloak room. But otherwise,Diabetes and I were a package deal at school and teachers and students dealt with it.
The nurse checked in with me, but I was pretty independent - for better or worse. This was in the days of shots twice a day and fizzy urine testing.
Like many kids back in the 70's and 80's, I went home for lunch - but not because of my diabetes. I lived close by and my friends and I would go to my house & watch reruns of "Hogan's Heroes"&"Bewitched" while we ate our sandwiches.
Urine testing was what we did back then - not real accurate, but I do remember my friends Leslie & Theresa thinking it was really cool.
In High School,I talked with our school nurse a lot. She was really nice and always wanted to know how I was doing. She was the one who explained the diabetes to my teachers and she's who I went to whenever I didn't feel well.
She also encouraged me to not just take care of myself, but to incorporate diabetes into the everyday and to become an active participant in my disease. She was a strong believer in taking the fear out of the disease for non-diabetics. "You have every right to be in class -whether you need your snack or you need to take your insulin" she'd tell me. I NEVER Forgot those lessons.
I didn't want to have to leave class early just to go to the nurse, to take a few unites of insulin before lunch. Lunch was short enough. I took it at the lunch table and it really helped make my good friends aware of what diabetes required.
I wanted to feel some independence regarding diabetes and allowing me to stay in class for snacks and to lows was a huge help, both educationally and emotionally. As diabetic children - it's so important to be an active participant in our disease from a young age - how else will we ever be able handle it as adults?
k2

k2 said...

Penny -
It's me again - I just wanted to make it clear that my H.S nurse was a huge help and a huge and positive influence on the way I deal with my diabetes. She was always there for me and always was on my side - she is one of the reasons I've become so proactive in Diabetes. She was very much like you and I am so grateful to have had such an advocate on my side every day, and just down the hall whenever I needed her. Back in the late 80's times were so different and I was lucky to have a great school nurse like her in my corner!
k2

Rachel said...

Tristan's school nurse is amazing. He actually has 3 total but only 1 remains with him all day. She takes care of him properly, she informs me of any changes, she calls and/or email if she has any questions or concerns. We talk so much that she is fast becoming a family friend. She even came to Tristan's birthday party. Not only does she monitor him well, she also makes sure that everybody who is in contact with him is well advice and she check up on him. She actually likes my son, he's not just a number to her. He's her priority. I wish all the nurses where like her.... now they other 2... well no comments! :)